Randomised clinical trial of early specialist palliative care plus standard care versus standard care alone in patients with advanced cancer: The Danish Palliative Care Trial.

PubMed

Groenvold, Mogens; Petersen, Morten Aagaard; Damkier, Anette; Neergaard, Mette Asbjoern; Nielsen, Jan Bjoern; Pedersen, Lise; Sjøgren, Per; Strömgren, Annette Sand; Vejlgaard, Tove Bahn; Gluud, Christian; Lindschou, Jane; Fayers, Peter; Higginson, Irene J; Johnsen, Anna Thit

2017-10-01

Beneficial effects of early palliative care have been found in advanced cancer, but the evidence is not unequivocal. To investigate the effect of early specialist palliative care among advanced cancer patients identified in oncology departments. The Danish Palliative Care Trial (DanPaCT) (ClinicalTrials.gov NCT01348048) is a multicentre randomised clinical trial comparing early referral to a specialist palliative care team plus standard care versus standard care alone. The planned sample size was 300. At five oncology departments, consecutive patients with advanced cancer were screened for palliative needs. Patients with scores exceeding a predefined threshold for problems with physical, emotional or role function, or nausea/vomiting, pain, dyspnoea or lack of appetite according to the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30) were eligible. The primary outcome was the change in each patient's primary need (the most severe of the seven QLQ-C30 scales) at 3- and 8-week follow-up (0-100 scale). Five sensitivity analyses were conducted. Secondary outcomes were change in the seven QLQ-C30 scales and survival. Totally 145 patients were randomised to early specialist palliative care versus 152 to standard care. Early specialist palliative care showed no effect on the primary outcome of change in primary need (-4.9 points (95% confidence interval -11.3 to +1.5 points); p = 0.14). The sensitivity analyses showed similar results. Analyses of the secondary outcomes, including survival, also showed no differences, maybe with the exception of nausea/vomiting where early specialist palliative care might have had a beneficial effect. We did not observe beneficial or harmful effects of early specialist palliative care, but important beneficial effects cannot be excluded.

Palliative Care Gaps in Providing Psychological Treatment: A Review of the Current State of Research in Multidisciplinary Palliative Care.

PubMed

Kozlov, Elissa; Niknejad, Bahar; Reid, M C

2018-03-01

Patients with advanced illness often have high rates of psychological symptoms. Many multicomponent palliative care intervention studies have investigated the efficacy of overall symptom reduction; however, little research has focused explicitly on how interventions address psychological symptoms associated with serious illness. The current study reviewed 59 multicomponent palliative care intervention articles and analyzed the mental health components of palliative care interventions and their outcomes in order to better understand the current state of psychological care in palliative care. The majority of articles (69.5%) did not provide any details regarding the psychological component delivered as part of the palliative care intervention. Most (54.2%) studies did not specify which provider on the team was responsible for providing the psychological intervention. Studies varied regarding the type of outcome measure utilized; multi-symptom assessment scales were used in 54.2% of studies, mental health scales were employed in 25.4%, quality of life and distress scales were used in 16.9%, and no psychological scales were reported in 28.8%. Fewer than half the studies (42.4%) documented a change in a psychological outcome. The majority of analyzed studies failed to describe how psychological symptoms were identified and treated, which discipline on the team provided the treatment, and whether psychological symptoms improved as a result of the intervention. Future research evaluating the effects of palliative care interventions on psychological symptoms will benefit from using reliable and valid psychological outcome measures and providing specificity regarding the psychological components of the intervention and who provides it.

[Assessment of IDC-Pal as a Diagnostic Tool for Family Physicians to Identify Patients with Complex Palliative Care Needs in Germany: a Pilot Study].

PubMed

Comino, María Rosa Salvador; Garcia, Victor Regife; López, Maria Auxiliadora Fernández; Feddersen, Berend; Roselló, María Luisa Martin; Sanftenberg, Linda; Schelling, Jörg

2017-07-11

Background Palliative medicine is an essential component of the health care system. Basic palliative care should be provided by primary care services (family physician and home nursing) with palliative-medical basic qualification. Often it is very difficult to identify patients that would profit from a specialized palliative care team. For the evaluation of the case complexity of a palliative patient, we present a Spanish diagnostic tool IDC-Pal, which tries to specify when, why and where a palliative patient should be referred. The aims of this study were the translation and cultural adaptation of the diagnostic tool for complexity in palliative care IDC-Pal to the German language, and the measurement of its feasibility and face validity. Methods During the first phase, a forward-backward translation with linguistic and cultural adaptation of the tool IDC-Pal as well as the validation of its content by a review committee was performed. During the second phase, the preliminary version of the tool was tested by 38 family physicians that were asked for a qualitative assessment using a 10-points Likert scale (1 = "strongly disagree" and 10 = "totally agree"). Finally, a definitive version was developed. Results The translation and adaptation were achieved without major problems. Both feasibility and apparent validity of the tool IDC-Pal were rated as high. The mean response in the Likert scale was 7.79, with a SD of 0.36. Participants strongly agreed on the apparent validity of the tool with a mean of 7.82 and a SD of 0.26 and on its feasibility with a mean of 7.79, and a SD of 0.39. Conclusions A conceptually, culturally and linguistically equivalent version of the original instrument IDC-Pal was obtained. German family physicians agreed on the usability of IDC-Pal as a tool for rating the case complexity of palliative patients. These results indicate that physicians in Bavaria and eventually in Germany could benefit of the full validation of IDC-Pal. © Georg Thieme Verlag KG Stuttgart · New York.

Palliative care knowledge, attitudes and perceived self-competence of nurses working in Vietnam.

PubMed

Nguyen, Ly Thuy; Yates, Patsy; Osborne, Yvonne

2014-09-01

To explore palliative care knowledge, attitudes and perceived self-competence of nurses working in oncology settings in Hanoi, Vietnam. The study employed a cross-sectional descriptive survey design. The self-administered questionnaires consisted of three validated instruments: the Expertise and Insight Test for Palliative Care, the Attitude Toward Care of the Dying Scale B and the Palliative Care Nursing Self Competence Scale. The sample consisted of 251 nurses caring for cancer patients in three oncology hospitals in Vietnam. The responses identified low scores in nurses' palliative care knowledge related to pain and other symptom management and psychological and spiritual aspects. Nurses' responses reflected discomfort in communicating about death and establishing therapeutic relationship with oncology patients who require palliative care. Additionally, nurses reported low scores in perceived self-competence when providing pain management and addressing social and spiritual domains of palliative care. The findings also revealed that nurses who had higher palliative care knowledge scores demonstrated attitudes which were more positive and expressed greater perceived self-competence. Nurses working in oncology wards need more education to develop their knowledge and skills of palliative care, especially in the areas of pain management, psychological and spiritual care, and communication.

Palliative care rehabilitation survey: a pilot study of patients' priorities for rehabilitation goals.

PubMed

Schleinich, M A; Warren, S; Nekolaichuk, C; Kaasa, T; Watanabe, S

2008-10-01

Rehabilitation in palliative care is often overlooked. Settings that do consider occupational or physical therapy for palliative care patients often consult to therapists with competing caseloads. Few therapists specialise in palliative care, but nearly all ask, 'What needs doing'? and 'How well am I doing that'? No existing instruments address their questions. The objective is to develop and test a questionnaire for identifying patient goals and priorities for rehabilitation in palliative care. A questionnaire representing 11 domains of the Canadian Model of Occupational Performance was designed and pilot tested at four palliative care sites. Each question reflected a typical rehabilitation intervention in palliative care. Patients were asked to rate how important each of these interventions was on a numerical rating scale (0, not important-10, extremely important). Open-ended questions captured verbatim comments regarding thoughts of rehabilitation. The questionnaire was tested for test-retest reliability with two interviews approximately 1 week apart. Forty patients participated in the first interview and 32 in the second. Eight of eleven domain sub-scores achieved an intra-class correlation coefficient of 0.6 or higher. The highest means were for the physical (8.2), institutional (7.8) and self-care (7.8) domains on the first interview and for the spiritual domain (7.9) on the second interview. Suggestions are provided to shorten the questionnaire and strengthen validity. This work furthers the understanding of the role of rehabilitation in palliative care. It also illustrates the feasibility of involving palliative care patients in research that contributes to setting standards and measuring quality of service.

[Pain Intensity and Time to Death of Cancer Patients Referred to Palliative Care].

PubMed

Barata, Pedro; Santos, Filipa; Mesquita, Graça; Cardoso, Alice; Custódio, Maria Paula; Alves, Marta; Papoila, Ana Luísa; Barbosa, António; Lawlor, Peter

2016-11-01

Pain is a common symptom experienced by cancer patients, especially in those with advanced disease. Our aim was to describe pain intensity in advanced cancer patients, referred to the palliative care unit, the factors underlying moderate to severe pain and its prognostic values. This was a prospective observational study. All patients with mestastatic solid tumors and with no specific oncologic treatment were included. Pain intensity was accessed using the pain scale from Edmonton Symptom Assessment Scale, rated from 0 to 10 on a numerical scale, where zero = no pain and 10 = worst possible pain. Between October 2012 and June 2015, a total of 301 patients participated in the study. The median age was 69 years, (37 - 94); most of the patients were men (57%) and 64.8% had a performance status of 3/4. About 42% reported pain severity ≥ 4 and 74% were medicated with opioids. Multivariate analysis indicated a correlation between performance status and reported pain (OR: 1.7; IC 95%: 1.0 - 2.7; p = 0.045). Median overall survival was 37 days (IC 95%: 28 - 46). Patients reporting moderate to severe pain (pain severity ≥ 4) had a median survival of 29 days (IC 95%: 21 - 37), comparing with those who had no or moderate pain with median survival of 49 days (IC 95%: 35 - 63) (p = 0.022). The performance status was associated with more intense pain. The performance status, hospitalization, intra-abdominal metastization and opioid analgesia were associated with shorter time to death in advanced cancer patients referred to palliative care. Cancer pain continues to be a major clinical problem in advanced cancer patients.

Concordance in the Assessment of Effectiveness of Palliative Care between Patients and Palliative Care Nurses in Malaysia: A Study with the Palliative Care Outcome Scale

PubMed Central

Koh, Kwee Choy; Gupta, Esha Das; Poovaneswaran, Sangeetha; Then, Siaw Ling; Teo, Michelle Jia Jui; Gan, Teik Yiap; Thing, Joanne Hwei Yean

2017-01-01

Context: The Palliative Care Outcome Scale (POS) is an easy-to-use assessment tool to evaluate the effectiveness of palliative care. There is no published literature on the use of POS as an assessment tool in Malaysia. Aim: To define the concordance in the assessment of quality of life between patients with advanced cancers and their palliative care nurses using a Malay version of the POS. Settings and Design: This study was conducted in the palliative care unit of the Hospital Tuanku Ja'afar Seremban, Malaysia, from February 2014 to June 2014. Subjects and Methods: We adapted and validated the English version of the 3-day recall POS into Malay and used it to define the concordance in the assessment of quality of life between patients and palliative care nurses. Forty patients with advanced stage cancers and forty palliative care nurses completed the Malay POS questionnaire. Statistical Analysis Used: The kappa statistical test was used to assess the agreement between patients and their palliative care nurses. Results: Slight to fair concordance was found in all items, except for one item (family anxiety) where there was no agreement. Conclusions: The Malay version of the POS was well accepted and reliable as an assessment tool for evaluation of the effectiveness of palliative care in Malaysia. Slight to fair concordance was shown between the patients and their palliative care nurses, suggesting the needs for more training of the nurses. PMID:28216862

Differences in home-based palliative care service utilisation of people with cancer and non-cancer conditions.

PubMed

Kralik, Debbie; Anderson, Barbara

2008-11-01

To identify home-based palliative care service utilisation by people with cancer and non-cancer conditions. Palliative care knowledge and skill have been derived from working with people with cancer. People with chronic conditions are now referred for home-based palliative care; however, there has been few studies published that have explored the impact of service utilisation by people with end-stage chronic conditions. The Australia-modified Karnofsky Performance Status (AKPS) scale was calculated for each person upon referral for home-based palliative care services to determine the functional capacity of the individual at the point of referral. Clients were divided into those with cancer diagnosis and those with non-cancer diagnosis. Service utilisation of the individual client was determined until separation from the palliative care service. The study was undertaken in 2007. The majority of people with cancer (63%) and non-cancer (71%) were assessed as having an AKPS score between 50-60. Thirty-one cancer clients (18·7%) and three non-cancer clients (7·1%) had an AKPS score between 70-90. This suggests that people with cancer are referred to palliative care services earlier than people with non-cancer conditions. People with non-cancer conditions were substantially higher users of home-based palliative care services over a longer period of time. Home-based palliative care service utilisation was higher for people with non-cancer conditions. Cost analysis research is recommended to delineate the actual costs of home-based palliative care service provision between people with cancer and non-cancer conditions. There is growing awareness of the need for palliative care services for people with non-cancer conditions. However, these services are provided for longer periods of time for this client group. Implications for practice are that the palliative care needs of people with non-cancer conditions may not be met within current palliative care service provision. There may be funding implications for home-based palliative care services that intend to meet the needs of people at end of life with non-cancer conditions. © 2008 The Authors. Journal compilation © 2008 Blackwell Publishing Ltd.

Symptom severity of patients with advanced cancer in palliative care unit: longitudinal assessments of symptoms improvement.

PubMed

Tai, Shu-Yu; Lee, Chung-Yin; Wu, Chien-Yi; Hsieh, Hui-Ya; Huang, Joh-Jong; Huang, Chia-Tsuan; Chien, Chen-Yu

2016-03-11

This study assessed the symptom severity of patients with advanced cancer in a palliative care unit and explored the factors associated with symptom improvement. This study was conducted in a palliative care unit in Taiwan between October 2004 and December 2009. Symptom intensity was measured by the "Symptom Reporting Form", and graded on a scale of 0 to 4 (0 = none, and 4 = extreme). These measures were assessed on the 1(st), 3(rd), 5(th), and 7(th) Day in the palliative care unit. The study data comprised routine clinical records and patients' demographic data. Generalized estimating equation (GEE) was used to assess the symptom improvement, and investigate the factors associated with the symptom reporting form scores. Among the 824 recruited patients with advanced cancer, pain (78.4%), anorexia (64.4%) and constipation (63.5%) were the most common and severe symptom. After controlling for other factors in the multivariate GEE model, the day of palliative care administration was a significant factor associated with all of the scales, except Days 7 on the dyspnoea and oedema scales and Day 5 on the anxiety scale. In addition, patients aged ≥ 65 years exhibited significantly lower scores on the pain, sleep disturbance, depression, and anxiety scales than did those aged < 65 years. Moreover, female patients exhibited higher scores on the vomiting, anorexia, oedema, depression, and anxiety scales than did male patients. Furthermore, patients with gastrointestinal tract cancer exhibited higher scores on the constipation, vomiting, anorexia, oedema, depression, and anxiety scales and lower scores on the dyspnoea scale than did those with lung cancer. Patients with breast cancer exhibited higher scores on the oedema scale and lower scores on the anxiety scale. Patients with genitourinary cancer exhibited higher scores on the vomiting and oedema scales and lower scores on the dyspnoea scale. Patients with head, neck, and oral cancer exhibited lower scores on the oedema scale alone. The symptom severity declined during the first week in the palliative care unit. In addition, differences in sex and primary cancer sites may contribute to varying degrees of symptom improvement.

Prevalence of delirium in advanced cancer patients in home care and hospice and outcomes after 1 week of palliative care.

PubMed

Mercadante, Sebastiano; Masedu, Francesco; Balzani, Isabella; De Giovanni, Daniela; Montanari, Luigi; Pittureri, Cristina; Bertè, Raffaella; Russo, Domenico; Ursini, Laura; Marinangeli, Franco; Aielli, Federica

2018-03-01

The aim of this study was to assess the prevalence of delirium in advanced cancer patients admitted to different palliative care services in Italy and possible related factors. The secondary outcome was to assess the changes of delirium after 1 week of palliative care. A consecutive sample of patients was screened for delirium in period of 1 year in seven palliative care services. General data, including primary tumor, age, gender, concomitant disease, palliative prognostic score (PaP), and Karnofsky status, were collected. Possible causes or factors associated with delirium were looked for. The Edmonton Symptom Assessment Scale was used to assess physical and psychological symptoms and the Memorial Delirium Assessment Scale (MDAS) to assess the cognitive status of patients, at admission (T0) and 1 week after palliative care (T7). Of 848 patients screened, 263 patients were evaluated. Sixty-six patients had only the initial evaluation. The mean Karnofsky status was 34.1 (SD = 6.69); the mean PaP score at admission was 6.9 (SD = 3.97). The mean duration of palliative care assistance, equivalent to survival, was 38.4 days (SD = 48, range 2-220). The mean MDAS values at admission and after 1 week of palliative care were 6.9 (SD = 6.71) and 8.8 (SD = 8.26), respectively. One hundred ten patients (41.8%) and 167 patients (67.3%) had MDAS values ≥ 7 at admission and after 1 week of palliative care, respectively. Age, dehydration, cachexia, chemotherapy in the last three months, and intensity of drowsiness and dyspnea were independently associated with a MDAS > 7. A worsening of drowsiness, the use of opioids, and the use of corticosteroids were independently associated with changes of MDAS from T0 to T7. Although the prevalence of delirium seems to be similar to that reported in other acute settings, delirium tended to worsen or poorly responded to a palliative care treatment. Some clinical factors were independently associated with delirium. This information is relevant for decision-making when delirium does not change despite a traditional intervention. Continuous assessment of delirium should be performed in these settings to detect deterioration of cognitive function. Further studies should elucidate whether an earlier approach to palliative care would decrease the prevalence of delirium at a late stage of disease.

Patient-Related Determinants of the Administration of Continuous Palliative Sedation in Hospices and Palliative Care Units: A Prospective, Multicenter, Observational Study.

PubMed

van Deijck, Rogier H P D; Hasselaar, Jeroen G J; Verhagen, Stans C A H H V M; Vissers, Kris C P; Koopmans, Raymond T C M

2016-05-01

Knowledge of determinants that are associated with the administration of continuous palliative sedation (CPS) helps physicians identify patients who are at risk of developing refractory symptoms, thereby enabling proactive care planning. This study aims to explore which patient-related factors at admission are associated with receiving CPS later in the terminal phase of life. A prospective multicenter observational study was performed in six Dutch hospices and three nursing home-based palliative care units. The association between patient-related variables at admission (age, gender, diagnosis, use of opioids or psycholeptics, number of medications, Karnofsky Performance Status scale score, Edmonton Symptom Assessment System distress score, and Glasgow Coma Scale score) and the administration of CPS at the end of life was analyzed. A total of 467 patients died during the study period, of whom 130 received CPS. In univariate analysis, statistically significant differences were noted between the sedated and nonsedated patients with respect to younger age (P = 0.009), malignancy as a diagnosis (P = 0.05), higher Karnofsky Performance Status score (P = 0.03), the use of opioids (P < 0.001), the use of psycholeptics (P = 0.003), and higher Edmonton Symptom Assessment System distress score (P = 0.05). Multivariate logistic regression analysis showed that only the use of opioids at admission (odds ratio 1.90; 95% confidence interval 1.18-3.05) was significantly associated with the administration of CPS. Physicians should be aware that patients who use opioids at admission have an increased risk for the administration of CPS at the end of life. In this group of patients, a comprehensive personalized care plan starting at admission is mandatory to try to prevent the development of refractory symptoms. Further research is recommended, to identify other determinants of the administration of CPS and to investigate which early interventions will be effective to prevent the need for CPS in patients at high risk. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

In-hospital mortality for children with hypoplastic left heart syndrome after stage I surgical palliation: teaching versus nonteaching hospitals.

PubMed

Berry, Jay G; Cowley, Collin G; Hoff, Charles J; Srivastava, Rajendu

2006-04-01

Teaching hospitals are perceived to provide a higher quality of care for the treatment of rare disease and complex patients. A substantial proportion of stage I palliation for hypoplastic left heart syndrome (HLHS) may be performed in nonteaching hospitals. This study compares the in-hospital mortality of stage I palliation between teaching and nonteaching hospitals. The authors conducted a retrospective cohort study using the Kids' Inpatient Database 1997 and 2000. Patients with HLHS undergoing stage I palliation were identified using International Classification of Diseases, Ninth Revision, Clinical Modification diagnostic and procedural codes. Seven hundred fifty-four and 880 discharges of children with HLHS undergoing stage I palliation in 1997 and 2000, respectively, were identified. The in-hospital mortality for the study population was 28% in 1997 and 24% in 2000. Twenty percent of stage I palliation operations were performed in nonteaching hospitals in 1997. Two percent of operations were performed in nonteaching hospitals in 2000. In 1997 only, in-hospital mortality remained higher in nonteaching hospitals after controlling for stage I palliation hospital volume and condition-severity diagnoses. Low-volume hospitals performing stage I palliation were associated with increased in-hospital mortality in 1997 and 2000. Patients with HLHS undergoing stage I palliation in nonteaching hospitals experienced increased in-hospital mortality in 1997. A significant reduction in the number of stage I palliation procedures performed in nonteaching hospitals occurred between 1997 and 2000. This centralization of stage I palliation into teaching hospitals, along with advances in postoperative medical and surgical care for these children, was associated with a decrease in mortality. Patients in low-volume hospitals performing stage I palliation continued to experience increased mortality in 2000.

Undergraduate training in palliative medicine: is more necessarily better?

PubMed

Mason, Stephen R; Ellershaw, John E

2010-04-01

The General Medical Council's call to modernize medical education prompted the University of Liverpool Medical School to develop a new undergraduate programme, integrating palliative medicine as 'core' curricula. Following successful piloting, the palliative medicine training programme was further developed and expanded. This paper examines whether the additional investment produces improved outcomes. In 1999, fourth year undergraduate medical students (Cohort 1, n = 217) undertook a 2-week pilot education programme in palliative medicine. Subsequently, the training programme was refined and extended, incorporating advanced communication skills training, an ethics project and individual case presentations (Cohort 2, n = 443). Congruent with the study's theoretical driver of self-efficacy, both cohorts were surveyed pre- and post-programme with validated measures of: (i) self-efficacy in palliative care scale; (ii) thanatophobia scale. No significant differences between cohorts' pre-programme scores were identified. Within each cohort, statistically and educationally significant post-education improvements were recorded in both scales. Further post-education analysis indicated that the extended programme produces significantly greater improvements in all domains of the self-efficacy in palliative care scale (communication, t =-7.28, patient management, t =-5.96, multidisciplinary team-working t =-3.77 at p < 0.000), but not thanatophobia. Although improvements were recorded in both cohorts, participation in the extended education programme resulted in further statistically significant gains. Interpreted through the theoretical model employed, improved self-efficacy and outcome expectancies will result in behavioural change that leads to improved practice and better patient care.

A new measure of home care patients' dignity at the end of life: The Palliative Patients' Dignity Scale (PPDS).

PubMed

Rudilla, David; Oliver, Amparo; Galiana, Laura; Barreto, Pilar

2016-04-01

This study aimed to develop a new and brief instrument to be employed in dignity measurement, one based on the perceptions of patients, relatives, and professionals about dignity. Surveys of patients receiving palliative care, family caregivers, and palliative care professionals were first carried out (sample 1). In the second step, palliative care patients were surveyed with a pilot questionnaire (sample 2). Finally, a survey design was used to assess patients admitted into a home care unit (sample 3). Sample 1 included 78 subjects, including patients, family caregivers, and professionals. Some 20 additional palliative patients participated in sample 2. Finally, 70 more patients admitted to a home care unit participated were surveyed (sample 3). Together with the Palliative Patients' Dignity Scale (PPDS), our survey included other measures of dignity, anxiety, depression, resilient coping, quality of life, spirituality, and social support. After analyzing data from steps 1 and 2, an eight-item questionnaire was presented for validation. The new scale showed appropriate factorial validity (χ2(19) = 21.43, p = 0.31, CFI = 0.99, GFI = 0.92, SRMR = 0.07, and RMSEA = 0.04), reliability (internal consistency estimations of 0.75 and higher), criterial validity (significant correlations with the hypothesized related variables), and a cutoff criteria of 50 on the overall scale. The new PPDS has appropriate psychometric properties that, together with its briefness, encourages its applicability for dignity assessment at the end of life.

Is the Life Space Assessment applicable to a palliative care population? Its relationship to measures of performance and quality of life.

PubMed

Phillips, Jane Louise; Lam, Lawrence; Luckett, Tim; Agar, Meera; Currow, David

2014-06-01

The spatial environments that palliative care patients frequent for business and leisure constrict as their disease progresses and their physical functioning deteriorates. Measuring a person's movement within his or her own environment is a clinically relevant and patient-centered outcome because it measures function in a way that reflects actual and not theoretical participation. This exploratory study set out to test whether the Life-Space Assessment (LSA) would correlate with other commonly used palliative care outcome measures of function and quality of life. The baseline LSA, Australia-modified Karnofsky Performance Status Scale (AKPS), and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Core 15-Palliative (EORTC QLQ-C15-PAL) scores from two large clinical trials were used to calculate correlation coefficients between the measures. Convergent validity analysis was undertaken by comparing LSA scores between participants with higher (≥70) and lower (≤60) AKPS scores. The LSA was correlated significantly and positively with the AKPS, with a moderate correlation coefficient of 0.54 (P<0.001). There was a significant weak negative correlation between the LSA and the EORTC QLQ-C15-PAL, with a small coefficient of -0.22 (P=0.027), but a strong correlation between the LSA and the EORTC QLQ-C15-PAL item related to independent activities of daily living (r=-0.654, P<0.01). A significant difference in the LSA score between participants with higher (≥70) and lower (≤60) AKPS scores t(97)=-4.35, P<0.001) was found. The LSA appears applicable to palliative care populations given the convergent validity and capacity of this instrument to differentiate a person's ability to move through life-space zones by performance status. Further research is required to validate and apply the LSA within community palliative care populations. Copyright © 2014 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

The feasibility of a randomised controlled trial to compare the cost-effectiveness of palliative cardiology or usual care in people with advanced heart failure: Two exploratory prospective cohorts.

PubMed

Johnson, Miriam J; McSkimming, Paula; McConnachie, Alex; Geue, Claudia; Millerick, Yvonne; Briggs, Andrew; Hogg, Karen

2018-06-01

The effectiveness of cardiology-led palliative care is unknown; we have insufficient information to conduct a full trial. To assess the feasibility (recruitment/retention, data quality, variability/sample size estimation, safety) of a clinical trial of palliative cardiology effectiveness. Non-randomised feasibility. Unmatched symptomatic heart failure patients on optimal cardiac treatment from (1) cardiology-led palliative service (caring together group) and (2) heart failure liaison service (usual care group). Outcomes/safety: Symptoms (Edmonton Symptom Assessment Scale), Kansas City Cardiomyopathy Questionnaire, performance, understanding of disease, anticipatory care planning, cost-effectiveness, survival and carer burden. A total of 77 participants (caring together group = 43; usual care group = 34) were enrolled (53% men; mean age 77 years (33-100)). The caring together group scored worse in Edmonton Symptom Assessment Scale (43.5 vs 35.2) and Kansas City Cardiomyopathy Questionnaire (35.4 vs 39.9). The caring together group had a lower consent/screen ratio (1:1.7 vs 1: 2.8) and few died before approach (0.08% vs 16%) or declined invitation (17% vs 37%). Data quality: At 4 months, 74% in the caring together group and 71% in the usual care group provided data. Most attrition was due to death or deterioration. Data quality in self-report measures was otherwise good. There was no difference in survival. Symptoms and quality of life improved in both groups. A future trial requires 141 (202 allowing 30% attrition) to detect a minimal clinical difference (1 point) in Edmonton Symptom Assessment Scale score for breathlessness (80% power). More participants (176; 252 allowing 30% attrition) are needed to detect a 10.5 change in Kansas City Cardiomyopathy Questionnaire score (80% power; minimum clinical difference = 5). A trial to test the clinical effectiveness (improvement in breathlessness) of cardiology-led palliative care is feasible.

The feasibility of a randomised controlled trial to compare the cost-effectiveness of palliative cardiology or usual care in people with advanced heart failure: Two exploratory prospective cohorts

PubMed Central

McSkimming, Paula; McConnachie, Alex; Geue, Claudia; Millerick, Yvonne; Briggs, Andrew; Hogg, Karen

2018-01-01

Background: The effectiveness of cardiology-led palliative care is unknown; we have insufficient information to conduct a full trial. Aim: To assess the feasibility (recruitment/retention, data quality, variability/sample size estimation, safety) of a clinical trial of palliative cardiology effectiveness. Design: Non-randomised feasibility. Setting/participants: Unmatched symptomatic heart failure patients on optimal cardiac treatment from (1) cardiology-led palliative service (caring together group) and (2) heart failure liaison service (usual care group). Outcomes/safety: Symptoms (Edmonton Symptom Assessment Scale), Kansas City Cardiomyopathy Questionnaire, performance, understanding of disease, anticipatory care planning, cost-effectiveness, survival and carer burden. Results: A total of 77 participants (caring together group = 43; usual care group = 34) were enrolled (53% men; mean age 77 years (33–100)). The caring together group scored worse in Edmonton Symptom Assessment Scale (43.5 vs 35.2) and Kansas City Cardiomyopathy Questionnaire (35.4 vs 39.9). The caring together group had a lower consent/screen ratio (1:1.7 vs 1: 2.8) and few died before approach (0.08% vs 16%) or declined invitation (17% vs 37%). Data quality: At 4 months, 74% in the caring together group and 71% in the usual care group provided data. Most attrition was due to death or deterioration. Data quality in self-report measures was otherwise good. Safety: There was no difference in survival. Symptoms and quality of life improved in both groups. A future trial requires 141 (202 allowing 30% attrition) to detect a minimal clinical difference (1 point) in Edmonton Symptom Assessment Scale score for breathlessness (80% power). More participants (176; 252 allowing 30% attrition) are needed to detect a 10.5 change in Kansas City Cardiomyopathy Questionnaire score (80% power; minimum clinical difference = 5). Conclusion: A trial to test the clinical effectiveness (improvement in breathlessness) of cardiology-led palliative care is feasible. PMID:29688127

Characteristics and Outcomes of In-Hospital Palliative Care Consultation among Patients with Renal Disease Versus Other Serious Illnesses.

PubMed

Grubbs, Vanessa; O'Riordan, David; Pantilat, Steve

2017-07-07

Despite significant morbidity and mortality associated with ESRD, these patients receive palliative care services much less often than patients with other serious illnesses, perhaps because they are perceived as having less need for such services. We compared characteristics and outcomes of hospitalized patients in the United States who had a palliative care consultation for renal disease versus other serious illnesses. In this observational study, we used data collected by the Palliative Care Quality Network, a national palliative care quality improvement collaborative. The 23-item Palliative Care Quality Network core dataset includes demographics, processes of care, and clinical outcomes of all hospitalized patients who received a palliative care consultation between December of 2012 and March of 2016. The cohort included 33,183 patients, of whom 1057 (3.2%) had renal disease as the primary reason for palliative care consultation. Mean age was 71.9 (SD=16.8) or 72.8 (SD=15.2) years old for those with renal disease or other illnesses, respectively. At the time of consultation, patients with renal disease or other illnesses had similarly low mean Palliative Performance Scale scores (36.0% versus 34.9%, respectively; P =0.08) and reported similar moderate to severe anxiety (14.9% versus 15.3%, respectively; P =0.90) and nausea (5.9% versus 5.9%, respectively; P >0.99). Symptoms improved similarly after consultation regardless of diagnosis ( P ≥0.50), except anxiety, which improved more often among those with renal disease (92.0% versus 66.0%, respectively; P =0.002). Although change in code status was similar among patients with renal disease versus other illnesses, from over 60% full code initially to 30% full code after palliative care consultation, fewer patients with renal disease were referred to hospice than those with other illnesses (30.7% versus 37.6%, respectively; P <0.001). Hospitalized patients with renal disease referred for palliative care consultation had similar palliative care needs, improved symptom management, and clarification of goals of care as those with other serious illnesses. Copyright © 2017 by the American Society of Nephrology.

Assessment of a Statewide Palliative Care Team Training Course: COMFORT Communication for Palliative Care Teams.

PubMed

Wittenberg, Elaine; Ferrell, Betty; Goldsmith, Joy; Ragan, Sandra L; Paice, Judith

2016-07-01

Despite increased attention to communication skill training in palliative care, few interprofessional training programs are available and little is known about the impact of such training. This study evaluated a communication curriculum offered to interprofessional palliative care teams and examined the longitudinal impact of training. Interprofessional, hospital-based palliative care team members were competitively selected to participate in a two-day training using the COMFORT(TM SM) (Communication, Orientation and options, Mindful communication, Family, Openings, Relating, Team) Communication for Palliative Care Teams curriculum. Course evaluation and goal assessment were tracked at six and nine months postcourse. Interprofessional palliative care team members (n = 58) representing 29 teams attended the course and completed course goals. Participants included 28 nurses, 16 social workers, 8 physicians, 5 chaplains, and one psychologist. Precourse surveys assessed participants' perceptions of institution-wide communication performance across the continuum of care and resources supporting optimum communication. Postcourse evaluations and goal progress monitoring were used to assess training effectiveness. Participants reported moderate communication effectiveness in their institutions, with the weakest areas being during bereavement and survivorship care. Mean response to course evaluation across all participants was greater than 4 (scale of 1 = low to 5 = high). Participants taught an additional 962 providers and initiated institution-wide training for clinical staff, new hires, and volunteers. Team member training improved communication processes and increased attention to communication with family caregivers. Barriers to goal implementation included a lack of institutional support as evidenced in clinical caseloads and an absence of leadership and funding. The COMFORT(TM SM) communication curriculum is effective palliative care communication training for interprofessional teams.

Outcome evaluation of the Palliative care Emphasis program on symptom management and Assessment for Continuous Medical Education: nationwide physician education project for primary palliative care in Japan.

PubMed

Yamamoto, Ryo; Kizawa, Yoshiyuki; Nakazawa, Yoko; Ohde, Sachiko; Tetsumi, Sato; Miyashita, Mitsunori

2015-01-01

Palliative care is an essential part of medicine, but most physicians have had no formal opportunity to acquire basic skills in palliative care. In Japan, the Palliative care Emphasis program on symptom management and Assessment for Continuous Medical Education (PEACE) was launched to provide formal primary palliative care education for all physicians engaged in cancer care. This study sought to determine whether PEACE could improve physicians' knowledge of, practices in, and difficulties with palliative care. In 2011, we conducted questionnaire-based surveys before, just after, and 2 months after completion of the PEACE program in physicians participating in the program at each of 15 designated cancer hospitals in Japan. Knowledge was measured using the palliative care knowledge questionnaire for PEACE (PEACE-Q). Practices and difficulties were evaluated using the Palliative Care self-reported Practice Scale (PCPS) and the Palliative Care Difficulties Scale (PCDS), respectively. Among 223 physicians participating in the program, 85 (38%) answered the follow-up survey. Significant improvements were noted on the PEACE-Q compared with baseline immediately after completion of the program, and this progress was maintained at 2 months (21.7 ± 5.56 versus 29.5 ± 2.10 versus 28.7 ± 3.28, respectively; p < 0.0001). Similarly, significant improvements were noted for total scores on both the PCPS and the PCDS at 2 months after completion of the program (62.1 ± 13.9 versus 69.6 ± 9.94 [p < 0.0001] for the PCPS; 44.4 ± 9.96 versus 39.4 ± 10.7 [p < 0.0001] for the PCDS). The PEACE education program improved physicians' knowledge of, practices in, and difficulties with palliative care.

Development of a Middle-Age and Geriatric Trauma Mortality Risk Score A Tool to Guide Palliative Care Consultations.

PubMed

Konda, Sanjit R; Seymour, Rachel; Manoli, Arthur; Gales, Jordan; Karunakar, Madhav A

2016-11-01

This study aimed to develop a tool to quantify risk of inpatient mortality among geriatric and middleaged trauma patients. This study sought to demonstrate the ability of the novel risk score in the early identification of high risk trauma patients for resource-sparing interventions, including referral to palliative medicine. This retrospective cohort study utilized data from a single level 1 trauma center. Regression analysis was used to create a novel risk of inpatient mortality score. A total of 2,387 low energy and 1,201 high-energy middle-aged (range: 55 to 64 years of age) and geriatric (65 years of age or odler) trauma patients comprised the study cohort. Model validation was performed using 37,474 lowenergy and 97,034 high-energy patients from the National Trauma Databank (NTDB). Potential hospital cost reduction was calculated for early referral of high risk trauma patients to palliative medicine services in comparison to no palliative medicine referral. Factors predictive of inpatient mortality among the study and validation patient cohorts included; age, Glasgow Coma Scale, and Abbreviated Injury Scale for the head and neck and chest. Within the validation cohort, the novel mortality risk score demonstrated greater predictive capacity than existing trauma scores [STTGMALE-AUROC: 0.83 vs. TRISS 0.80, (p < 0.01), STTGMAHE-AUROC: 0.86 vs. TRISS 0.85, (p < 0.01)]. Our model demonstrated early palliative medicine evaluation could produce $1,083,082 in net hospital savings per year. This novel risk score for older trauma patients has shown fidelity in prediction of inpatient mortality; in the study and validation cohorts. This tool may be used for early intervention in the care of patients at high risk of mortality and resource expenditure.

Measuring death-related anxiety in advanced cancer: preliminary psychometrics of the Death and Dying Distress Scale.

PubMed

Lo, Christopher; Hales, Sarah; Zimmermann, Camilla; Gagliese, Lucia; Rydall, Anne; Rodin, Gary

2011-10-01

The alleviation of distress associated with death and dying is a central goal of palliative care, despite the lack of routine measurement of this outcome. In this study, we introduce the Death and Dying Distress Scale (DADDS), a new, brief measure we have developed to assess death-related anxiety in advanced cancer and other palliative populations. We describe its preliminary psychometrics based on a sample of 33 patients with advanced or metastatic cancer. The DADDS broadly captures distress about the loss of time and opportunity, the process of death and dying, and its impact on others. The initial version of the scale has a one-factor structure and good internal reliability. Dying and death-related distress was positively associated with depression and negatively associated with spiritual, emotional, physical, and functional well-being, providing early evidence of construct validity. This distress was relatively common, with 45% of the sample scoring in the upper reaches of the scale, suggesting that the DADDS may be a relevant outcome for palliative intervention. We conclude by presenting a revised 15-item version of the scale for further study in advanced cancer and other palliative populations.

Predictors of Responses to Corticosteroids for Cancer-Related Fatigue in Advanced Cancer Patients: A Multicenter, Prospective, Observational Study.

PubMed

Matsuo, Naoki; Morita, Tatsuya; Matsuda, Yoshinobu; Okamoto, Kenichiro; Matsumoto, Yoshihisa; Kaneishi, Keisuke; Odagiri, Takuya; Sakurai, Hiroki; Katayama, Hideki; Mori, Ichiro; Yamada, Hirohide; Watanabe, Hiroaki; Yokoyama, Taro; Yamaguchi, Takashi; Nishi, Tomohiro; Shirado, Akemi; Hiramoto, Shuji; Watanabe, Toshio; Kohara, Hiroyuki; Shimoyama, Satofumi; Aruga, Etsuko; Baba, Mika; Sumita, Koki; Iwase, Satoru

2016-07-01

Although corticosteroids are widely used to relieve cancer-related fatigue (CRF), information regarding the factors predicting responses to corticosteroids remains limited. The aim of this study was to identify potential factors predicting responses to corticosteroids for CRF in advanced cancer patients. Inclusion criteria for this multicenter, prospective, observational study were patients who had metastatic or locally advanced cancer and had a fatigue intensity score of 4 or more on a 0-10 Numerical Rating Scale (NRS). Univariate and multivariate analyses were conducted to identify the factors predicting two-point reduction or more in NRS on day 3. Among 179 patients who received corticosteroids, 86 (48%; 95% CI 41%-56%) had a response with two-point reduction or more. Factors that significantly predicted responses were performance status score of 3 or more, Palliative Performance Scale score more than 40, absence of ascites, absence of drowsiness, absence of depression, serum albumin level greater than 3 mg/dL, serum sodium level greater than 135 mEq/L, and baseline NRS score greater than 5. A multivariate analysis showed that the independent factors predicting responses were baseline NRS score greater than 5 (odds ratio [OR] 6.6, 95% CI 2.8-15.4), Palliative Performance Scale score more than 40 (OR 4.4, 95% CI 2.1-9.3), absence of drowsiness (OR 3.4, 95% CI 1.7-6.9), absence of ascites (OR 2.3, 95% CI 1.1-4.7), and absence of pleural effusion (OR 2.2, 95% CI 1.0-5.0). Treatment responses to corticosteroids for CRF may be predicted by baseline symptom intensity, performance status, drowsiness, and severity of fluid retention symptoms. Larger prospective studies are needed to confirm these results. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

[General practitioner and palliative sedation].

PubMed

Schweitzer, Bart

2014-01-01

Recent publications in Dutch national newspapers on palliative sedation have raised concerns about its use in general practice. There is now evidence that there is no significant increase in the incidence of palliative sedation. Euthanasia requests were pending in 20.8% of the cases in which palliative sedation was performed, but the general practitioners could clearly justify why they made this choice. This is important because it indicates that they are aware of a sharp distinction between euthanasia and palliative sedation. Although the decision to perform palliative sedation was discussed with almost all cancer patients, patient involvement was less present in non-cancer conditions. This may be related to different disease trajectories, but it also indicates that attention should be devoted to earlier identification of patients in need of palliative care. The findings confirm that the practice of palliative sedation by general practitioners largely reflects the recommendations of the Dutch National Guideline on Palliative Sedation.

Use of Standardized Assessment Tools to Improve the Effectiveness of Palliative Care Rounds: A Quality Improvement Initiative.

PubMed

Spaner, Donna; Caraiscos, Valerie B; Muystra, Christina; Furman, Margaret Lynn; Zaltz-Dubin, Jodi; Wharton, Marilyn; Whitehead, Katherine

Optimal care for patients in the palliative care setting requires effective clinical teamwork. Communication may be challenging for health-care workers from different disciplines. Daily rounds are one way for clinical teams to share information and develop care plans for patients. The objective of this initiative was to improve the structure and process of daily palliative care rounds by incorporating the use of standardized tools and improved documentation into the meeting. We chose a quality improvement (QI) approach to address this initiative. Our aims were to increase the use of assessment tools when discussing patient care in rounds and to improve the documentation and accessibility of important information in the health record, including goals of care. This QI initiative used a preintervention and postintervention comparison of the outcome measures of interest. The initiative was tested in a palliative care unit (PCU) over a 22-month period from April 2014 to January 2016. Participants were clinical staff in the PCU. Data collected after the completion of several plan-do-study-act cycles showed increased use and incorporation of the Edmonton Symptom Assessment System and Palliative Performance Scale into patient care discussions as well as improvement in inclusion of goals of care into the patient plan of care. Our findings demonstrate that the effectiveness of daily palliative care rounds can be improved by incorporating the use of standard assessment tools and changes into the meeting structure to better focus and direct patient care discussions.

Day-to-day care in palliative sedation: survey of nurses' experiences with decision-making and performance.

PubMed

Arevalo, Jimmy J; Rietjens, Judith A; Swart, Siebe J; Perez, Roberto S G M; van der Heide, Agnes

2013-05-01

Continuous palliative sedation has been the focus of extensive international debates in the field of end-of-life decision making. Although nurses may be important participants in the performance of continuous palliative sedation, research has focused primarily on the role and experience of physicians. Nurses' experiences differ from that of physicians; they more often describe that continuous palliative sedation is used with the intention of hastening death and to have experienced serious emotional burden. Therefore, it is important to understand the experience of nurses in continuous palliative sedation. To describe nurses' experiences with the decision-making and performance of continuous palliative sedation in terminally ill patients. Cross-sectional study. In 2008, a structured questionnaire was sent to 576 nurses in six professional home care organizations, ten units for palliative care in nursing homes and in-patient hospices and seven hospitals in the western region of the Netherlands. Respondents provided information about the last patient receiving continuous palliative sedation whom they had cared for. Two-hundred seventy-seven questionnaires were returned and 199 (71.84%) reported a case of continuous palliative sedation. Nurses felt involved in the decision to use sedation in 84% of cases, albeit to a lesser extent in home care (68.75%, p=0.002). They agreed with the performance of continuous palliative sedation in 95.97% of cases and they proposed the use of continuous palliative sedation in 16.16%. Nurses were present at the start of sedation in 81.40% of cases and reported physicians to be present in 45.22%. In 72.77%, arrangements had been made among caregivers about the coordination of health care regarding the sedation. Nurses seem to play an important role in the use of continuous sedation. This role is mainly supportive toward physicians and patients during the decision-making process, but shifts to an active performance of sedation, particularly in settings where they explicitly participate as members of a team. Nurses could develop the practice of palliative sedation by anticipating procedural obstacles in the performance of continuous palliative sedation. We recommend them to become more active participants in the decision-making to improve the care of patients receiving continuous palliative sedation. Copyright © 2012 Elsevier Ltd. All rights reserved.

Effects of the hospital-based palliative care team on the care for cancer patients: an evaluation study.

PubMed

Kao, Chi-Yin; Hu, Wen-Yu; Chiu, Tai-Yuan; Chen, Ching-Yu

2014-02-01

The hospital-based palliative care team model has been implemented in most Western countries, but this model is new in Taiwan and there is little research to evaluate its outcomes. The purpose of this study was to evaluate the effects of the hospital-based palliative care team on the care for cancer patients. The design was a quasi-experimental study with a pretest-posttest design. A medical center, National Taiwan University Hospital in Taipei, Taiwan. Cancer patients were excluded after the hospital-based palliative care team visited if they were unable to give informed consent, were not well enough to finish the baseline assessment, were likely to die within 24h or would be discharged within 24h, or could not communicate in Mandarin or Taiwanese. A sample of 60 patients who consulted the hospital-based palliative care team was recruited. Patients recruited to the study were divided to receive the usual care only (control group, n=30) or the usual care plus visits from the hospital-based palliative care team (intervention group, n=30). Data were collected using questionnaires including the Symptom Distress Scale, Hospital Anxiety and Depression Scale, Spiritual Well-Being Scale, and Social Support Scale at the initial assessment and one week later. Comparison between groups revealed that the degree change for edema, fatigue, dry mouth, abdominal distention, and spiritual well-being in the intervention group showed significant improvement compared to the control group (p<0.05). However, there was no difference between groups on measures of anxiety, depression and feeling of social support. Within group analysis showed patients' pain score, dyspnea, and dysphagia improved in both groups (p<0.05). In addition, the average degree of constipation and insomnia in the control group declined from baseline (p<0.05), while the degree of edema, fatigue, dry mouth, appetite loss, abdominal distention, and dizziness decreased significantly in the intervention group (p<0.05). The findings indicated the hospital-based palliative care team can improve the care for patients in relation to symptom management and spiritual well-being. The hospital-based palliative care team is a good care model for patients and worth implementing in clinical practice in Taiwan. The results also provide a general understanding about how the hospital-based palliative care team works in Taiwanese culture. Copyright © 2013 Elsevier Ltd. All rights reserved.

Accuracy of the Distress Thermometer for home care patients with palliative care needs in Germany.

PubMed

Wüller, Johannes; Küttner, Stefanie; Foldenauer, Ann Christina; Rolke, Roman; Pastrana, Tania

2017-06-01

Our aim was to examine the accuracy of the German version of the Distress Thermometer (DT) compared with the Hospital Anxiety and Depression Scale (HADS) in patients with palliative care needs living at home. Ours was a 15-month cross-sectional study beginning in September of 2013 in Germany with consecutive patients cared for by a palliative home care service. The survey was implemented during the initial visit by a home care team. Patients were excluded if they were under 18 years of age, mentally or physically unable to complete the assessment questionnaires as judged by their healthcare worker, or unable to understand the German language. During the first encounter, the DT and HADS were applied, and sociodemographic and medical data were collected. A total of 89 persons completed both the HADS and DT questionnaires (response rate = 59.7%; mean age = 67 years; female = 55.1%; married = 65.2%; living home with relatives = 73.0%; oncological condition = 92.1%; Karnofsky Performance Scale [KPS] score: 0-40 = 30.3%, 50-70 = 57.3%, >80 = 6.7%). The mean DT score was 6.3 (±2.3), with 84.3% of participants scoring above the DT cutoff (≥4). The mean HADStotal score was 17.9 (±7.8), where 64% of participants had a total HADS score (HADStotal) ≥15, 51.7% reported anxiety (HADSanxiety ≥ 8), and 73% reported depression (HADSdepression ≥ 8). Using the HADS as a gold standard, a DT cutoff score ≥5 was optimal for identifying severe distress in patients with palliative care needs, with a sensitivity of 93.0%, a specificity of 34.4%, a positive predictive value (PPV) of 73.3%, and likelihood ratios LR+ = 1.42 (<3) and -LR = 0.203 (<0.3). The DT performed satisfactorily compared to the HADS in screening for distress in our study and can be employed as an instrument for identification of patients with distress. Consequent to the high prevalence of distress, we recommend its routine use for screening distressed persons at home with palliative care needs in order to offer adequate support.

Palliative Care Planner: A Pilot Study to Evaluate Acceptability and Usability of an Electronic Health Records System-integrated, Needs-targeted App Platform.

PubMed

Cox, Christopher E; Jones, Derek M; Reagan, Wen; Key, Mary D; Chow, Vinca; McFarlin, Jessica; Casarett, David; Creutzfeldt, Claire J; Docherty, Sharron L

2018-01-01

The quality and patient-centeredness of intensive care unit (ICU)-based palliative care delivery is highly variable. To develop and pilot an app platform for clinicians and ICU patients and their family members that enhances the delivery of needs-targeted palliative care. In the development phase of the study, we developed an electronic health record (EHR) system-integrated mobile web app system prototype, PCplanner (Palliative Care Planner). PCplanner screens the EHR for ICU patients meeting any of five prompts (triggers) for palliative care consultation, allows families to report their unmet palliative care needs, and alerts clinicians to these needs. The evaluation phase included a prospective before/after study conducted at a large academic medical center. Two control populations were enrolled in the before period to serve as context for the intervention. First, 25 ICU patients who received palliative care consults served as patient-level controls. Second, 49 family members of ICU patients who received mechanical ventilation for at least 48 hours served as family-level controls. Afterward, 14 patients, 18 family members, and 10 clinicians participated in the intervention evaluation period. Family member outcomes measured at baseline and 4 days later included acceptability (Client Satisfaction Questionnaire [CSQ]), usability (Systems Usability Scale [SUS]), and palliative care needs, assessed with the adapted needs of social nature, existential concerns, symptoms, and therapeutic interaction (NEST) scale; the Patient-Centeredness of Care Scale (PCCS); and the Perceived Stress Scale (PSS). Patient outcomes included frequency of goal concordant treatment, hospital length of stay, and discharge disposition. Family members reported high PCplanner acceptability (mean CSQ, 14.1 [SD, 1.4]) and usability (mean SUS, 21.1 [SD, 1.7]). PCplanner family member recipients experienced a 12.7-unit reduction in NEST score compared with a 3.4-unit increase among controls (P = 0.002), as well as improved mean scores on the PCCS (6.6 [SD, 5.8]) and the PSS (-0.8 [SD, 1.9]). The frequency of goal-concordant treatment increased over the course of the intervention (n = 14 [SD, 79%] vs. n = 18 [SD, 100%]). Compared with palliative care controls, intervention patients received palliative care consultation sooner (3.9 [SD, 2.7] vs. 6.9 [SD, 7.1] mean days), had a shorter mean hospital length of stay (20.5 [SD, 9.1] vs. 22.3 [SD, 16.0] patient number), and received hospice care more frequently (5 [36%] vs. 5 [20%]), although these differences were not statistically significant. PCplanner represents an acceptable, usable, and clinically promising systems-based approach to delivering EHR-triggered, needs-targeted ICU-based palliative care within a standard clinical workflow. A clinical trial in a larger population is needed to evaluate its efficacy.

Simple prognostic model for patients with advanced cancer based on performance status.

PubMed

Jang, Raymond W; Caraiscos, Valerie B; Swami, Nadia; Banerjee, Subrata; Mak, Ernie; Kaya, Ebru; Rodin, Gary; Bryson, John; Ridley, Julia Z; Le, Lisa W; Zimmermann, Camilla

2014-09-01

Providing survival estimates is important for decision making in oncology care. The purpose of this study was to provide survival estimates for outpatients with advanced cancer, using the Eastern Cooperative Oncology Group (ECOG), Palliative Performance Scale (PPS), and Karnofsky Performance Status (KPS) scales, and to compare their ability to predict survival. ECOG, PPS, and KPS were completed by physicians for each new patient attending the Princess Margaret Cancer Centre outpatient Oncology Palliative Care Clinic (OPCC) from April 2007 to February 2010. Survival analysis was performed using the Kaplan-Meier method. The log-rank test for trend was employed to test for differences in survival curves for each level of performance status (PS), and the concordance index (C-statistic) was used to test the predictive discriminatory ability of each PS measure. Measures were completed for 1,655 patients. PS delineated survival well for all three scales according to the log-rank test for trend (P < .001). Survival was approximately halved for each worsening performance level. Median survival times, in days, for each ECOG level were: EGOG 0, 293; ECOG 1, 197; ECOG 2, 104; ECOG 3, 55; and ECOG 4, 25.5. Median survival times, in days, for PPS (and KPS) were: PPS/KPS 80-100, 221 (215); PPS/KPS 60 to 70, 115 (119); PPS/KPS 40 to 50, 51 (49); PPS/KPS 10 to 30, 22 (29). The C-statistic was similar for all three scales and ranged from 0.63 to 0.64. We present a simple tool that uses PS alone to prognosticate in advanced cancer, and has similar discriminatory ability to more complex models. Copyright © 2014 by American Society of Clinical Oncology.

Development and evaluation of a palliative care curriculum for cystic fibrosis healthcare providers.

PubMed

Linnemann, Rachel W; O'Malley, Patricia J; Friedman, Deborah; Georgiopoulos, Anna M; Buxton, David; Altstein, Lily L; Sicilian, Leonard; Lapey, Allen; Sawicki, Gregory S; Moskowitz, Samuel M

2016-01-01

Primary palliative care refers to basic skills that all healthcare providers can employ to improve quality of life for patients at any stage of disease. Training in these core skills is not commonly provided to clinicians caring for cystic fibrosis (CF) patients. The objective of this study was to assess change in comfort with core skills among care team members after participation in CF-specific palliative care training focused on management of burdensome symptoms and difficult conversations. A qualitative needs assessment was performed to inform the development of an 18-hour curriculum tailored to the chronicity and complexity of CF care. A 32-question pre- and post-course survey assessed CF provider comfort with the targeted palliative care skills in 5 domains using a 5-point Likert scale (1=very uncomfortable, 3=neutral, 5=very comfortable). Among course participants (n=16), mean overall comfort score increased by 0.9, from 3 (neutral) to 3.9 (comfortable) (p<0.001). Mean comfort level increased significantly (range 0.8 to 1.4) in each skill domain: use of supportive care resources, pain management, non-pain symptom management, communication, and psychosocial skills. CF-specific palliative care training was well received by participants and significantly improved self-assessed comfort with core skills. Copyright © 2015 European Cystic Fibrosis Society. Published by Elsevier B.V. All rights reserved.

Images of God and attitudes towards death in relation to spiritual wellbeing: an exploratory side study of the EORTC QLQ-SWB32 validation study in palliative cancer patients.

PubMed

Kruizinga, Renske; Scherer-Rath, Michael; Schilderman, Johannes B A M; Weterman, Mariëtte; Young, Teresa; van Laarhoven, Hanneke W M

2017-12-08

When patients are facing the ends of their lives, spiritual concerns often become more important. It is argued that effective, integrated palliative care should include addressing patients' spiritual wellbeing. In 2002 the EORTC Quality of Life Group began an international study to develop an spiritual wellbeing measure for palliative patients (SWB). Spiritual wellbeing is a complex construct, which comprises multiple contributory components. While conducting the EORTC SWB validation study with Dutch palliative cancer patients we also conducted an exploratory side study to examine the relationship between their spiritual wellbeing, images of God, and attitudes towards death. Patients with incurable cancer who were able to understand Dutch and were well enough to participate, completed the provisional SWB measure and two scales assessing "Images of God" and "attitudes towards death and afterlife". Linear stepwise regression analysis was conducted to assess the relation between SWB and other factors. Fifty two Dutch patients, 28 females and 24 males, participated. The whole SWB measure validation identified four scoring scales: Existential (EX), Relationship with Self (RS), Relationships with Others (RO), Relationship with Something Greater (RSG) and Relationship with God (RG, for believers only). Adherence to an image of an Unknowable God and a worse WHO performance status were negatively associated with the EX scale. The image of an Unknowable God was also found to be negatively associated with the RS scale. Higher education correlated positively with the RO scale. Adherence to a Personal or Non-Personal Image of God was not found to be positively influencing any of the domains of SWB. For our participants, an Unknowable Image of God had a negative relationship with their SWB. Furthermore, specific images of God (Personal or Non Personal) are not associated with domains of SWB. Together, these findings suggest that spiritual wellbeing surpasses traditional religious views. The development of a new language which more naturally expresses different images of a higher being amongst patients in western late-modern societies may further aid our understanding and subsequently lead to an improvement in patients' spiritual wellbeing.

Palliative care outcomes in surgical oncology patients with advanced malignancies: a mixed methods approach

PubMed Central

Baker, Karen; Stolar, Marilyn; Miller-Davis, Claiborne; Ames, Nancy; Yates, Jan; Bolle, Jacques; Pereira, Donna; St. Germain, Diane; Handel, Daniel; Berger, Ann

2012-01-01

Purpose To prospectively compare outcomes and processes of hospital-based early palliative care with standard care in surgical oncology patients (N = 152). Methods A randomized, mixed methods, longitudinal study evaluated the effectiveness of a hospital-based Pain and Palliative Care Service (PPCS). Interviews were conducted presurgically and at follow-up visits up to 1 year. Primary outcome measures included the Gracely Pain Intensity and Unpleasantness Scales and the Symptom Distress Scale. Qualitative interviews assessed social support, satisfaction with care, and communication with providers. Survival analysis methods explored factors related to treatment crossover and study discontinuation. Models for repeated measures within subjects over time explored treatment and covariate effects on patient-reported pain and symptom distress. Results None of the estimated differences achieved statistical significance; however, for those who remained on study for 12 months, the PPCS group performed better than their standard of care counterparts. Patients identified consistent communication, emotional support, and pain and symptom management as positive contributions delivered by the PPCS. Conclusions It is unclear whether lower pain perceptions despite greater symptom distress were clinically meaningful; however, when coupled with the patients’ perceptions of their increased resources and alternatives for pain control, one begins to see the value of an integrated PPCS. PMID:22101861

Assessing anxiety and depression with respect to the quality of life in cancer inpatients receiving palliative care.

PubMed

Bužgová, Radka; Jarošová, Darja; Hajnová, Erika

2015-12-01

The study aimed at assessing the presence of anxiety and depression in cancer inpatients receiving palliative care at an oncology department using the Hospital Anxiety and Depression Scale (HADS) and determining whether anxiety and depression contribute to a lower quality of life controlled for pain and illness severity. This cross-sectional study comprised 225 advanced cancer inpatients (a mean age of 65.1 years). Data were collected with the HADS, EORTC QLQ-C30 and Karnofsky Performance Status scale. Anxiety (HADS-a ≥8) was found in 33.9% and depression (HADS-d ≥8) in 47.6% of patients. Higher anxiety scores were observed in patients living with a partner (p = 0.042) and non-religious patients (p = 0.045). Correlations were found between anxiety, depression and all quality of life dimensions (r = 0.31-0.63). Multiple regression analysis showed that anxiety and depression contribute to lower physical and emotional functioning. Patients with anxiety (HADS-a ≥8) and depression (HADS-d ≥8) reported a lower total quality of life (p < 0.01). Management of anxiety and depression in cancer patients receiving palliative care may contribute to improvement in certain quality of life dimensions. Copyright © 2015 Elsevier Ltd. All rights reserved.

Appropriateness and reliability testing of the modified Richmond Agitation-Sedation Scale in Spanish patients with advanced cancer.

PubMed

Benítez-Rosario, Miguel Angel; Castillo-Padrós, Manuel; Garrido-Bernet, Belen; González-Guillermo, Toribio; Martínez-Castillo, Luis Pedro; González, Aceysele

2013-06-01

A tool to quantify agitation severity and sedation level in patients with advanced cancer is needed. To test the appropriateness and reliability of the Richmond Agitation-Sedation Scale (RASS) in Spanish patients with advanced cancer. The original RASS was translated into Spanish according to the standard guidelines. Face validity was assessed by members of the palliative care team, and interrater reliability was assessed, using a weighted kappa, from observations of patients admitted to the palliative care unit. The association between scores of the RASS, Ramsay Sedation Scale, and Glasgow Coma Scale was evaluated using Spearman's ρ. Three hundred twenty-two observations were performed in 156 patients: 116 observations were performed for delirious patients, 76 observations for sedated patients, and 130 observations for patients admitted for other symptom control. The weighted kappa values were practically equal to or greater than 0.90 between nurses and nurses and physicians. The agreement level between observers for each RASS score was roughly 90%. The correlation between the RASS and the Ramsay and Glasgow Scale values was analyzed for 196 observations recorded in 80 patients. The sedation scale of the RASS had a strong correlation with both the Ramsay (Spearman's ρ, -0.89; P < 0.001) and the Glasgow Coma Scales (Spearman's ρ, 0.85; P < 0.001). These data support the use of the RASS in Spanish patients with advanced cancer. Copyright © 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

Music Therapy in Palliative Care.

PubMed

Warth, Marco; Keßler, Jens; Hillecke, Thomas K; Bardenheuer, Hubert J

2015-11-13

Music therapy has been used successfully for over 30 years as part of palliative care programs for severely ill patients. There is nonetheless a lack of high-quality studies that would enable an evidence-based evaluation of its psychological and physiological effects. In a randomized controlled trial, 84 hospitalized patients in palliative care were assigned to one of two treatment arms--music therapy and control. The music therapy intervention consisted of two sessions of live music-based relaxation exercises; the patients in the control group listened to a verbal relaxation exercise. The primary endpoints were self-ratings of relaxation, well-being, and acute pain, assessed using visual analog scales. Heart rate variability and health-related quality of life were considered as secondary outcomes. The primary data analysis was performed according to the intention-to-treat principle. Analyses of covariance revealed that music therapy was more effective than the control treatment at promoting relaxation (F = 13.7; p <0.001) and well-being (F = 6.41; p = 0.01). This effect was supported by a significantly greater increase in high-frequency oscillations of the heart rate (F = 8.13; p = 0.01). Music therapy did not differ from control treatment with respect to pain reduction (F = 0.4; p = 0.53), but it led to a significantly greater reduction in the fatigue score on the quality-of-life scale (F = 4.74; p = 0.03). Music therapy is an effective treatment with a low dropout rate for the promotion of relaxation and well-being in terminally ill persons undergoing palliative care.

Impact of the Macmillan specialist Care at Home service: a mixed methods evaluation across six sites.

PubMed

Johnston, Bridget; Patterson, Anne; Bird, Lydia; Wilson, Eleanor; Almack, Kathryn; Mathews, Gillian; Seymour, Jane

2018-02-23

The Midhurst Macmillan Specialist Palliative Care at Home Service was founded in 2006 to improve community-based palliative care provision. Principal components include; early referral; home-based clinical interventions; close partnership working; and flexible teamwork. Following a successful introduction, the model was implemented in six further sites across England. This article reports a mixed methods evaluation of the implementation across these 'Innovation Centres'. The evaluation aimed to assess the process and impact on staff, patients and carers of providing Macmillan Specialist Care at Home services across the six sites. The study was set within a Realist Evaluation framework and used a longitudinal, mixed methods research design. Data collection over 15 months (2014-2016) included: Quantitative outcome measures - Palliative Performance Scale [PPS] and Palliative Prognostic Index [PPI] (n = 2711); Integrated Palliative Outcome Scales [IPOS] (n = 1157); Carers Support Needs Assessment Tool [CSNAT] (n = 241); Views of Informal Carers -Evaluation of Services [VOICES-SF] (n = 102); a custom-designed Service Data Tool [SDT] that gathered prospective data from each site (n = 88). Qualitative data methods included: focus groups with project team and staff (n = 32 groups with n = 190 participants), and, volunteers (n = 6 groups with n = 32 participants). Quantitative data were analysed using SPPS Vs. 21 and qualitative data was examined via thematic analysis. Comparison of findings across the six sites revealed the impact of their unique configurations on outcomes, compounded by variations in stage and mode of implementation. PPS, PPI and IPOS data revealed disparity in early referral criteria, complicated by contrasting interpretations of palliative care. The qualitative analysis, CSNAT and VOICES-SF data confirmed the value of the Macmillan model of care but uptake of specialist home-based clinical interventions was limited. The Macmillan brand engendered patient and carer confidence, bringing added value to existing services. Significant findings included better co-ordination of palliative care through project management and a single referral point and multi-disciplinary teamwork including leadership from consultants in palliative medicine, the role of health care assistants in rapid referral, and volunteer support. Macmillan Specialist Care at Home increases patient choice about place of death and enhances the quality of end of life experience. Clarification of key components is advocated to aid consistency of implementation across different sites and support future evaluative work.

Improved knowledge of and difficulties in palliative care among physicians during 2008 and 2015 in Japan: Association with a nationwide palliative care education program.

PubMed

Nakazawa, Yoko; Yamamoto, Ryo; Kato, Masashi; Miyashita, Mitsunori; Kizawa, Yoshiyuki; Morita, Tatsuya

2018-02-01

Palliative care education for health care professionals is a key element in improving access to quality palliative care. The Palliative Care Emphasis Program on Symptom Management and Assessment for Continuous Medical Education (PEACE) was designed to provide educational opportunities for all physicians in Japan. As of 2015, 57,764 physicians had completed it. The objective of this study was to estimate the effects of the program. This study was an analysis of 2 nationwide observational studies from 2008 and 2015. We conducted 2 questionnaire surveys for representative samples of physicians. The measurements used were the Palliative Care Knowledge Test (range, 0-100) and the Palliative Care Difficulties Scale (range, 1-4). Comparisons were made with the unpaired Student t test and with a multivariate linear regression model using 2 cohorts and a propensity score-matched sample. This study analyzed a total of 48,487 physicians in 2008 and a total of 2720 physicians in 2015. Between 2008 and 2015, physicians' knowledge and difficulties significantly improved on the Palliative Care Knowledge Test with total scores of 68 and 78, respectively (P < .001; effect size, 0.40) and on the Palliative Care Difficulties Scale with total scores of 2.65 and 2.49, respectively (P < .001; effect size, 0.29). Propensity-score matching resulted in 619 untrained physicians matched to 619 trained physicians, and physicians who trained with the PEACE program had a higher knowledge score (74 vs 86; P < .001; effect size, 0.64) and a lower difficulties score (2.6 vs 2.3; P < .001; effect size, 0.42). Physicians' knowledge of and difficulties with palliative care improved on a national level. The PEACE program may have contributed to these improvements. Cancer 2018;124:626-35. © 2017 American Cancer Society. © 2017 American Cancer Society.

Continuous Palliative Sedation for Existential Distress? A Survey of Canadian Palliative Care Physicians' Views.

PubMed

Voeuk, Anna; Nekolaichuk, Cheryl; Fainsinger, Robin; Huot, Ann

2017-01-01

Palliative sedation can be used for refractory symptoms during end-of-life care. However, continuous palliative sedation (CPS) for existential distress remains controversial due to difficulty determining when this distress is refractory. The aim was to determine the opinions and practices of Canadian palliative care physicians regarding CPS for existential distress. A survey focusing on experience and views regarding CPS for existential distress was sent to 322 members of the Canadian Society of Palliative Care Physicians. Eighty-one surveys returned (accessible target, 314), resulting in a response rate of 26%. One third (31%) of the respondents reported providing CPS for existential distress. On a 5-point Likert-type scale, 40% of participants disagreed, while 43% agreed that CPS could be used for existential distress alone. Differing opinions exist regarding this complex and potentially controversial issue, necessitating the education of health-care professionals and increased awareness within the general public.

Timing and Outcome of Referral to the First Stand-Alone Palliative Care Center in the Eastern Mediterranean Region, the Palliative Care Center of Kuwait.

PubMed

Al-Saleh, Khaled; Al-Awadi, Ahmad; Soliman, Najla A; Mostafa, Sobhy; Mostafa, Mohammad; Mostafa, Wafaa; Alsirafy, Samy A

2017-05-01

Compared to other regions of the world, palliative care (PC) in the Eastern Mediterranean region is at an earlier stage of development. The Palliative Care Center of Kuwait (PCC-K) was established a few years ago as the first stand-alone PC center in the region. This study was conducted to investigate the timing of referral to the PCC-K and its outcome. Retrospective review of referrals to the PCC-K during its first 3 years of action. Late referral was defined as referral during the last 30 days of life. During the 3-year period, 498 patients with cancer were referred to the PCC-K of whom 467 were eligible for analysis. Referral was considered late in 58% of patients. Nononcology facilities were more likely to refer patients late when compared to oncology facilities ( P = .033). The palliative performance scale (PPS) was ≤30 in 59% of late referrals and 21% in earlier referrals ( P < .001). Among 467 referred patients, 342 (73%) were eligible for transfer to the PCC-K, 102 (22%) were ineligible, and 23 (5%) died before assessment by the PCC-K consultation team. From the 342 eligible patients, the family caregivers refused the transfer of 64 (19%) patients to the PCC-K. Patients are frequently referred late to the PCC-K. Further research to identify barriers to PC and its early integration in Kuwait is required. The PPS may be useful in identifying late referrals.

Organization and evaluation of generalist palliative care in a Danish hospital.

PubMed

Bergenholtz, Heidi; Hølge-Hazelton, Bibi; Jarlbaek, Lene

2015-05-06

Hospitals have a responsibility to ensure that palliative care is provided to all patients with life-threatening illnesses. Generalist palliative care should therefore be acknowledged and organized as a part of the clinical tasks. However, little is known about the organization and evaluation of generalist palliative care in hospitals. Therefore the aim of the study was to investigate the organization and evaluation of generalist palliative care in a large regional hospital by comparing results from existing evaluations. Results from three different data sets, all aiming to evaluate generalist palliative care, were compared retrospectively. The data-sets derived from; 1. a national accreditation of the hospital, 2. a national survey and 3. an internal self-evaluation performed in the hospital. The data were triangulated to investigate the organization and evaluation of palliative care in order to identify concordances and/or discrepancies. The triangulation indicated poor validity of the results from existing methods used to evaluate palliative care in hospitals. When the datasets were compared, several discrepancies occurred with regard to the organization and the performance of generalist palliative care. Five types of discrepancies were found in 35 out of 56 sections in the fulfilment of the national accreditation standard for palliative care. Responses from the hospital management and the department managements indicated that generalist palliative care was organized locally--if at all--within the various departments and with no overall structure or policy. This study demonstrates weaknesses in the existing evaluation methods for generalist palliative care and highlights the lack of an overall policy, organization and goals for the provision of palliative care in the hospital. More research is needed to focus on the organization of palliative care and to establish indicators for high quality palliative care provided by the hospital. The lack of valid indicators, both for the hospital's and the departments' provision of palliative care, calls for more qualitative insight in the clinical staff's daily work including their culture and acceptance of the provision of palliative care.

Addressing the religious and spiritual needs of dying patients by healthcare staff in Korea: patient perspectives in a multi-religious Asian country.

PubMed

Kang, Jina; Shin, Dong Wook; Choi, Jin Young; Park, Chang Hae; Baek, Young Ji; Mo, Ha Na; Song, Mi Ok; Park, Shin Ae; Moon, Do Ho; Son, Ki Young

2012-04-01

We investigated how patients' spiritual and religious needs are addressed by healthcare staff in inpatient palliative care centers in Korea, a multi-religious country. We performed a cross-sectional, multicenter survey of terminal cancer patients in inpatient palliative care centers. Approximately half (50.5%) of the patients reported that their spiritual and religious needs were addressed by healthcare staff. Patients whose needs were addressed reported better quality of life (QoL), as measured using the European Organization for Research and Treatment of Cancer Quality-of-Life Questionnaire for Palliative Care, than patients whose needs were not addressed (p<0.05), although these groups did not differ when measured using the Comprehensive QoL Scale. Patients with a religious affiliation [adjusted odds ratio (aOR), 2.38; 95% confidence interval (CI), 0.70-8.05], those who were admitted to a religious palliative care center (aOR, 2.61; 95% CI, 0.86-7.96), and those whose religious affiliation was the same as that of the palliative care center (aOR, 2.42; 95% CI, 0.96-6.07) tended to have their spiritual and religious needs addressed, although not statistically significant. Although patients whose spiritual and religious needs were addressed by healthcare staff showed significantly better QoL, such needs were not addressed in a significant proportion of patients, especially those who were not religious or were admitted to non-religious palliative care centers. Strategies should be developed to ensure that spiritual care is provided to all patients with terminal cancer, regardless of the religious background of the patient. Copyright © 2011 John Wiley & Sons, Ltd.

Development, implementation, and process evaluation of a regional palliative care quality improvement project.

PubMed

Dudgeon, Deborah J; Knott, Christine; Chapman, Cheryl; Coulson, Kathy; Jeffery, Elizabeth; Preston, Sharon; Eichholz, Mary; Van Dijk, Janice P; Smith, Anne

2009-10-01

The delivery of optimal palliative care requires an integrated and coordinated approach of many health care providers across the continuum of care. In response to identified gaps in the region, the Palliative Care Integration Project (PCIP) was developed to improve continuity and decrease variability of care to palliative patients with cancer. The infrastructure for the project included multi-institutional and multisectoral representation on the Steering Committee and on the Development, Implementation and Evaluation Working Groups. After review of the literature, five Collaborative Care Plans and Symptom Management Guidelines were developed and integrated with validated assessment tools (Edmonton Symptom Assessment System and Palliative Performance Scale). These project resources were implemented in the community, the palliative care unit, and the cancer center. Surveys were completed by frontline health professionals (defined as health professionals providing direct care), and two independent focus groups were conducted to capture information regarding: 1) the development of the project and 2) the processes of implementation and usefulness of the different components of the project. Over 90 individuals from more than 30 organizations were involved in the development, implementation, and evaluation of the PCIP. Approximately 600 regulated health professionals and allied health professionals who provided direct care, and over 200 family physicians and medical residents, received education/training on the use of the PCIP resources. Despite unanticipated challenges, frontline health professionals reported that the PCIP added value to their practice, particularly in the community sector. The PCIP showed that a network in which each organization had ownership and where no organization lost its autonomy, was an effective way to improve integration and coordination of care delivery.

Therapeutic Touch(®) in a geriatric Palliative Care Unit - A retrospective review.

PubMed

Senderovich, Helen; Ip, Mary Lou; Berall, Anna; Karuza, Jurgis; Gordon, Michael; Binns, Malcolm; Wignarajah, Shaira; Grossman, Daphna; Dunal, Lynda

2016-08-01

Complementary therapies are increasingly used in palliative care as an adjunct to the standard management of symptoms to achieve an overall well-being for patients with malignant and non-malignant terminal illnesses. A Therapeutic Touch Program was introduced to a geriatric Palliative Care Unit (PCU) in October 2010 with two volunteer Therapeutic Touch Practitioners providing treatment. To conduct a retrospective review of Therapeutic Touch services provided to patients in an in-patient geriatric palliative care unit in order to understand their responses to Therapeutic Touch. A retrospective medical chart review was conducted on both patients who received Therapeutic Touch as well as a random selection of patients who did not receive Therapeutic Touch from October 2010-June 2013. Client characteristics and the Therapeutic Touch Practitioners' observations of the patients' response to treatment were collected and analyzed. Patients who did not receive Therapeutic Touch tended to have lower admitting Palliative Performance Scale scores, shorter length of stay and were older. Based on a sample of responses provided by patients and observed by the Therapeutic Touch practitioner, the majority of patients receiving treatment achieved a state of relaxation or sleep. This retrospective chart review suggests that implementation of a TT program for an inpatient geriatric Palliative Care Unit is feasible, and appears to be safe, and well-tolerated. Moreover, patient responses, as recorded in the Therapeutic Touch practitioners' session notes, suggest beneficial effects of Therapeutic Touch for a significant number of participants with no evidence of negative sequelae. Therefore, the use of TT in this difficult setting appears to have potential value as an adjunct or complementary therapy to help patients relax. Crown Copyright © 2016. Published by Elsevier Ltd. All rights reserved.

Associations between physical activity and quality of life in cancer patients receiving palliative care: a pilot survey.

PubMed

Lowe, Sonya S; Watanabe, Sharon M; Baracos, Vickie E; Courneya, Kerry S

2009-11-01

The primary aim of this study was to examine the association between physical activity and quality of life (QoL) in cancer patients receiving palliative care. Fifty advanced cancer patients aged 18 years or older with clinician-estimated life expectancy of 3-12 months and Palliative Performance Status Scale scores greater than 30% were recruited from an outpatient palliative care clinic and palliative home care. Participants completed a cross-sectional survey by means of face-to-face interview assessing self-reported QoL (McGill Quality of Life Questionnaire [MQOL]), self-reported physical function (Late-Life Function and Disability Instrument), symptoms (Edmonton Symptom Assessment System), and physical activity behavior. Seventy-six percent (38 of 50) of the participants were deceased at the time of data analysis, with a median survival of 104 days from time of survey to time of death. Walking was the most common reported physical activity. Analyses of variance indicated that participants who reported walking more than 30 minutes per day also reported higher existential subscores (+/-0.8 [95% CI, 0.0-1.5]; P=0.045), support subscores (+/-0.7 [95% CI, 0.1-1.4]; P=0.027), and total scores (+/-0.5 [95% CI, 0.0-0.9]; P=0.046) on the MQOL. There were no significant differences for self-reported physical function or symptoms. Our findings show a significant positive association between physical activity and QoL scores in this sample of patients with advanced cancer. A pilot intervention trial testing the causal effects of physical activity on QoL in cancer patients receiving palliative care is warranted.

Relationship between pain and post-traumatic stress symptoms in palliative care.

PubMed

Roth, Maya L; St Cyr, Kate; Harle, Ingrid; Katz, Joel D

2013-08-01

Previous research suggests that patients receiving palliative care may simultaneously experience poorly managed pain and post-traumatic stress disorder (PTSD)-related symptoms as a result of their deteriorating health. To: 1) examine predictors of PTSD-related symptoms in patients requiring palliative care; 2) assess whether anxiety, depression, pain catastrophizing, and pain anxiety mediate the relationship between pain interference and PTSD-related symptoms; and 3) evaluate the impact of these variables on pain interference and PTSD-related symptoms. One hundred patients receiving palliative care at one of two palliative care sites in London, ON, Canada, completed the PTSD Checklist-Civilian version (PCL-C), the Hospital Anxiety and Depression Scale (HADS), the Pain Catastrophizing Scale (PCS), the Brief Pain Inventory-Short Form (BPI-SF), and the Pain Anxiety Symptoms Scale-20 (PASS-20). Hierarchical multiple regressions were used to examine HADS-Anxiety, HADS-Depression, PCS and PASS-20 scores as predictors of PCL-C scores; and mediation analyses were used to test the effect of HADS-Anxiety, HADS-Depression, PCS, and PASS-20 on the relationship between BPI-SF interference and PCL-C. Mediators that significantly affected this relationship in the individual mediator models were entered into a multiple mediator model. Only pain anxiety and pain catastrophizing emerged as significant mediators of the relationship between pain interference and PTSD-related symptoms. After being entered in a multiple mediator model, pain anxiety emerged as the strongest mediator. The findings of the present study reveal that pain and PTSD-related symptoms are important concerns in palliative care, and that pain must be addressed to best meet the needs of this population. Copyright © 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

Palliative Sedation in Patients With Cancer.

PubMed

Maltoni, Marco; Setola, Elisabetta

2015-10-01

Palliative sedation involves the use of sedative medication to relieve refractory symptoms in patients by reducing their level of consciousness. Although it is considered an acceptable clinical practice from most ethical points of view, palliative sedation is still a widely debated procedure and merits better understanding. The relevant medical literature pertaining to palliative sedation was analyzed and reviewed from various technical, relational, and bioethical perspectives. Proportionate palliative sedation is considered to be the most clinically appropriate modality for performing palliative sedation. However, guidelines must be followed to ensure that it is performed correctly. Benzodiazepines represent the first therapeutic option and careful monitoring of dosages is essential to avoid oversedation or undersedation. Proportionate palliative sedation is used to manage and relieve refractory symptoms in patients with cancer during their last days or hours of life. Evidence suggests that its use has no detrimental effect on survival. A different decision-making process is used to manage the withdrawal of hydration than the process used to determine whether proportionate palliative sedation is appropriate. Communication between patients, their relatives, and the health care staff is important during this medical intervention.

Informed palliative care in nursing homes through the interRAI Palliative Care instrument: a study protocol based on the Medical Research Council framework.

PubMed

Hermans, Kirsten; Spruytte, Nele; Cohen, Joachim; Van Audenhove, Chantal; Declercq, Anja

2014-12-05

Nursing homes are important locations for palliative care. Through comprehensive geriatric assessments (CGAs), evaluations can be made of palliative care needs of nursing home residents. The interRAI Palliative Care instrument (interRAI PC) is a CGA that evaluates diverse palliative care needs of adults in all healthcare settings. The evaluation results in Client Assessment Protocols (CAPs: indications of problems that need addressing) and Scales (e.g. Palliative Index for Mortality (PIM)) which can be used to design, evaluate and adjust care plans. This study aims to examine the effect of using the interRAI PC on the quality of palliative care in nursing homes. Additionally, it aims to evaluate the feasibility and validity of the interRAI PC. This study covers phases 0, I and II of the Medical Research Council (MRC) framework for designing and evaluating complex interventions, with a longitudinal, quasi-experimental pretest-posttest design and with mixed methods of evaluation. In phase 0, a systematic literature search is conducted. In phase I, the interRAI PC is adapted for use in Belgium and implemented on the BelRAI-website and a practical training is developed. In phase II, the intervention is tested in fifteen nursing homes. Participating nursing homes fill out the interRAI PC during one year for all residents receiving palliative care. Using a pretest-posttest design with quasi-random assignment to the intervention or control group, the effect of the interRAI PC on the quality of palliative care is evaluated with the Palliative care Outcome Scale (POS). Psychometric analysis is conducted to evaluate the predictive validity of the PIM and the convergent validity of the CAP 'Mood' of the interRAI PC. Qualitative data regarding the usability and face validity of the instrument are collected through focus groups, interviews and field notes. This is the first study to evaluate the validity and effect of the interRAI PC in nursing homes, following a methodology based on the MRC framework. This approach improves the study design and implementation and will contribute to a higher generalizability of results. The final result will be a psychometrically evaluated CGA for nursing home residents receiving palliative care. ClinicalTrials.gov NCT02281032. Registered October 30th, 2014.

Concordance of Barthel Index, ECOG-PS, and Palliative Performance Scale in the assessment of functional status in patients with advanced medical diseases.

PubMed

Hernández-Quiles, C; Bernabeu-Wittel, M; Pérez-Belmonte, L M; Macías-Mir, P; Camacho-González, D; Massa, B; Maiz-Jiménez, M; Ollero-Baturone, M

2017-09-01

Analysing most relevant clinical features and concordance between different functional scales in patients with advanced medical diseases (PAMD). Cross-sectional multicentre study that included PAMD (heart, lung, kidney, liver, and neurological diseases) in hospital settings from February 2009 to October 2010. We analysed clinical, biological and functional features in performing activities of daily living (ADL) by medians of Barthel Index (BI); additionally we assessed their performance status by medians of Eastern Cooperative Oncology Group-Performance Status (ECOG-PS) and Palliative Performance Scale (PPS) scores. We evaluated the concordance of these instruments in assessing functional impairment by κ and intraclass correlation coefficient tests. 1847 patients were included (average age 79 years, 50.1% men). Most common symptoms were dyspnoea (62.31%), asthenia (23%) and delirium (20.14%). Functional assessment showed a high prevalence of severe or total impairment in performing basic ADL by medians of used instruments (BI median=35 (IQR=70), and 52.1% of patients with severe-total impairment; ECOG-PS median=2 (IQR 30), and 44% of patients with severe-total impairment; and PPS median=50 (IQR 30), and 32% of patients with severe-total impairment). Concordance among these instruments was acceptably good ( κ indexes ranging from 0.653 to 0.745 (p<0.0001)). PAMD represent a population with severe functional impairment, which requires a multidisciplinary approach for proper management. Assessment of functional ability in this population by BI, ECOG-PS, and PPS showed good concordance. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.

Coping strategies, emotional outcomes and spiritual quality of life in palliative care nurses.

PubMed

Desbiens, Jean-Francois; Fillion, Lise

2007-06-01

It is in accompanying the dying that palliative care nurses say they find meaning in their work. To further explore this phenomenon, consideration of coping strategies is proposed. The main objective of this correlational study was to describe the association between coping strategies (using a revised version of the COPE scale (Carver et al, 1999)), emotional outcomes (distress and vigour; profile of mood states (POMS)), and spiritual quality of life (using the Functional Assessment of Chronic Illness Therapy - Spiritual Wellbeing Scale (FACIT-sp)). A sample of 120 nurses providing palliative care in acute care hospitals and the community in Quebec was included. Positive reinterpretation (beta=.27; p<.01) and turning to religion (beta=.33; p<.001), two strategies related to meaning-making coping and disengagement (beta=-.19; p<.05), were the best predictors, accounting for 22% of variance of spiritual quality of life. These findings are consistent with recent studies and highlight the importance of meaning-making strategies in psychological adjustment to bereavement for palliative care nurses.

The Richmond Agitation-Sedation Scale modified for palliative care inpatients (RASS-PAL): a pilot study exploring validity and feasibility in clinical practice.

PubMed

Bush, Shirley H; Grassau, Pamela A; Yarmo, Michelle N; Zhang, Tinghua; Zinkie, Samantha J; Pereira, José L

2014-03-31

The Richmond Agitation-Sedation Scale (RASS), which assesses level of sedation and agitation, is a simple observational instrument which was developed and validated for the intensive care setting. Although used and recommended in palliative care settings, further validation is required in this patient population. The aim of this study was to explore the validity and feasibility of a version of the RASS modified for palliative care populations (RASS-PAL). A prospective study, using a mixed methods approach, was conducted. Thirteen health care professionals (physicians and nurses) working in an acute palliative care unit assessed ten consecutive patients with an agitated delirium or receiving palliative sedation. Patients were assessed at five designated time points using the RASS-PAL. Health care professionals completed a short survey and data from semi-structured interviews was analyzed using thematic analysis. The inter-rater intraclass correlation coefficient range of the RASS-PAL was 0.84 to 0.98 for the five time points. Professionals agreed that the tool was useful for assessing sedation and was easy to use. Its role in monitoring delirium however was deemed problematic. Professionals felt that it may assist interprofessional communication. The need for formal education on why and how to use the instrument was highlighted. This study provides preliminary validity evidence for the use of the RASS-PAL by physicians and nurses working in a palliative care unit, specifically for assessing sedation and agitation levels in the management of palliative sedation. Further validity evidence should be sought, particularly in the context of assessing delirium.

A Nationwide Survey About Palliative Sedation Involving Japanese Palliative Care Specialists: Intentions and Key Factors Used to Determine Sedation as Proportionally Appropriate.

PubMed

Hamano, Jun; Morita, Tatsuya; Ikenaga, Masayuki; Abo, Hirofumi; Kizawa, Yoshiyuki; Tunetou, Satoru

2018-03-01

Although there has long been debate about physicians' intentions and what physicians consider to be proportionally appropriate when performing palliative sedation, few large studies have been performed. To identify physicians' intentions when starting continuous deep sedation and to clarify what factors determine whether physicians regard sedation as proportionally appropriate in relation to expected survival, the patients' wishes, and refractoriness. A nationwide questionnaire survey of Japanese palliative care specialists was performed from August to December 2016. We defined continuous deep sedation as the continuous use of sedatives to relieve intolerable and refractory symptoms with the loss of consciousness until death. Of the 695 palliative care specialists enrolled, 440 were analyzed (response rate, 69%). A total of 95% and 87% of the physicians reported that they explicitly intended to perform symptom palliation and decrease consciousness levels, respectively. Moreover, 38% answered that they explicitly intended to maintain unconsciousness until death, and 11% reported that they intended to shorten survival to some extent. The respondents considered that continuous deep sedation is more appropriate when the predicted survival is shorter, the patients' wishes are consistent and clear, and confidence in the refractoriness of symptoms is higher. Japanese palliative care specialists explicitly intend to control symptoms and reduce the level of consciousness when performing continuous deep sedation, but there are differences in their intentions with regard to maintaining unconsciousness until death. Predicted survival, patients' wishes, and confidence in refractoriness are associated with physicians' judgment that sedation is proportionally appropriate. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Geritalk: communication skills training for geriatric and palliative medicine fellows.

PubMed

Kelley, Amy S; Back, Anthony L; Arnold, Robert M; Goldberg, Gabrielle R; Lim, Betty B; Litrivis, Evgenia; Smith, Cardinale B; O'Neill, Lynn B

2012-02-01

Expert communication is essential to high-quality care for older patients with serious illness. Although the importance of communication skills is widely recognized, formal curricula for teaching communication skills to geriatric and palliative medicine fellows is often inadequate or unavailable. The current study drew upon the educational principles and format of an evidence-based, interactive teaching method to develop an intensive communication skills training course designed specifically to address the common communication challenges that geriatric and palliative medicine fellows face. The 2-day retreat, held away from the hospital environment, included large-group overview presentations, small-group communication skills practice, and development of future skills practice commitment. Faculty received in-depth training in small-group facilitation techniques before the course. Geriatric and palliative medicine fellows were recruited to participate in the course and 100% (n = 18) enrolled. Overall satisfaction with the course was very high (mean 4.8 on a 5-point scale). After the course, fellows reported an increase in self-assessed preparedness for specific communication challenges (mean increase 1.4 on 5-point scale, P < .001). Two months after the course, fellows reported a high level of sustained skills practice (mean 4.3 on 5-point scale). In sum, the intensive communication skills program, customized for the specific needs of geriatric and palliative medicine fellows, improved fellows' self-assessed preparedness for challenging communication tasks and provided a model for ongoing deliberate practice of communication skills. © 2012, Copyright the Authors Journal compilation © 2011, The American Geriatrics Society.

Geritalk: Communication Skills Training for Geriatrics and Palliative Medicine Fellows

PubMed Central

Kelley, Amy S.; Back, Anthony L.; Arnold, Robert M.; Goldberg, Gabrielle R.; Lim, Betty B.; Litrivis, Evgenia; Smith, Cardinale B.; O’Neill, Lynn B.

2011-01-01

Expert communication is essential to high quality care for older patients with serious illness. While the importance of communication skills is widely recognized, formal curricula for teaching communication skills to geriatrics and palliative medicine fellows is often inadequate or unavailable. We drew upon the educational principles and format of an evidence-based, interactive teaching method, to develop an intensive communication skills training course designed specifically to address the common communication challenges faced by geriatrics and palliative medicine fellows. The 2-day retreat, held away from the hospital environment, included large-group overview presentations, small-group communication skills practice, and development of future skills practice commitment. Faculty received in-depth training in small-group facilitation techniques prior to the course. Geriatrics and palliative medicine fellows were recruited to participate in the course and 100% (n=18) enrolled. Overall satisfaction with the course was very high (mean 4.8 on 5-point scale). Compared to before the course, fellows reported an increase in self-assessed preparedness for specific communication challenges (mean increase 1.4 on 5-point scale, p<0.01). Two months after the course, fellows reported a high level of sustained skills practice (mean 4.3 on 5-point scale). In sum, the intensive communication skills program, tailored to the specific needs of geriatrics and palliative medicine fellows, improved fellows’ self-assessed preparedness for challenging communication tasks and provided a model for ongoing deliberate practice of communication skills. PMID:22211768

Nationwide Survey of Palliative Care for Patients With Heart Failure in Japan.

PubMed

Kuragaichi, Takashi; Kurozumi, Yuma; Ohishi, Shogo; Sugano, Yasuo; Sakashita, Akihiro; Kotooka, Norihiko; Suzuki, Makoto; Higo, Taiki; Yumino, Dai; Takada, Yasuko; Maeda, Seiko; Yamabe, Saori; Washida, Koichi; Takahashi, Tomonori; Ohtani, Tomohito; Sakata, Yasushi; Sato, Yukihito

2018-04-25

Palliative care for heart failure (HF) patients is recommended in Western guidelines, so this study aimed to clarify the current status of palliative care for HF patients in Japan.Methods and Results:A survey was sent to all Japanese Circulation Society-authorized cardiology training hospitals (n=1,004) in August 2016. A total of 544 institutions (54%) returned the questionnaire. Of them, 527 (98%) answered that palliative care is necessary for patients with HF. A total of 227 (42%) institutions held a palliative care conference for patients with HF, and 79% of the institutions had <10 cases per year. Drug therapy as palliative care was administered at 403 (76%) institutions; morphine (87%) was most frequently used. Among sedatives, dexmedetomidine (33%) was administered more often than midazolam (29%) or propofol (20%). Regarding the timing of end-of-life care, most institutions (84%) reported having considered palliative care when a patient reached the terminal stage of HF. Most frequently, the reason for the decision at the terminal stage was "difficulty in discontinuing cardiotonics." A major impediment to the delivery of palliative care was "difficulty predicting an accurate prognosis." This large-scale survey showed the characteristics of palliative care for HF in Japan. The present findings may aid in the development of effective end-of-life care systems.

[Validation of the Spanish version of the Palliative Care Outcome Scale].

PubMed

Serra-Prat, Mateu; Nabal, Maria; Santacruz, Víctor; Picaza, Josep M; Trelis, Jordi

2004-10-02

The objective of this study was to translate the Palliative Care Outcome Scale (POS) into Spanish and to validate it. The translation and adaptation was based on the conceptual equivalence of the terms used. In order to study the psychometric properties, 200 patients receiving palliative care were asked to fill out the POS questionnaire, the European Organization for Research on Cancer Treatment Quality of Life Questionnaire (EORCT QLQ C-30), the Barthel Index and the Karnofsky Index on their first visit. The Spanish version of the POS questionnaire was given to the patients again, a week later, to measure the intra-observer reliability. There were no major problems with the translation and adaptation process. The Spanish POS adapted very well for both the staff and the patients versions. Inter- and intra-observer reliability was good, with intraclass correlation coefficients of between 0.61 and 0.93 according to the item. Internal consistency analysis showed a Cronbach's alpha of 0.62 for the staff version and 0.64 for the patients version. Most of the Spanish POS correlated with the EORTC QLQ C-30 emotional function scale and quality of life scale. The Spanish POS is a valid and reliable instrument for measuring the quality of life of patients receiving palliative care. It is useful in research as well as in everyday clinical practice.

Does it matter what you call it? A randomized trial of language used to describe palliative care services.

PubMed

Maciasz, R M; Arnold, R M; Chu, E; Park, S Y; White, D B; Vater, L B; Schenker, Y

2013-12-01

Integration of palliative care into oncology practice remains suboptimal. Misperceptions about the meaning of palliative care may negatively impact utilization. We assessed whether the term and/or description of palliative care services affected patient views. 2x2 between-subject randomized factorial telephone survey of 169 patients with advanced cancer. Patients were randomized into one of four groups that differed by name (supportive care vs. palliative care) and description (patient-centered vs. traditional). Main outcomes (0-10 Likert scale) were patient understanding, impressions, perceived need, and intended use of services. When compared to palliative care, the term supportive care was associated with better understanding (7.7 vs. 6.8; p = 0.021), more favorable impressions (8.4 vs. 7.3; p = 0.002), and higher future perceived need (8.6 vs. 7.7; p = 0.017). There was no difference in outcomes between traditional and patient-centered descriptions. In adjusted linear regression models, the term supportive care remained associated with more favorable impressions (p = 0.003) and higher future perceived need (p = 0.022) when compared to palliative care. Patients with advanced cancer view the name supportive care more favorably than palliative care. Future efforts to integrate principles of palliative medicine into oncology may require changing impressions of palliative care or substituting the term supportive care.

The determinants of home and nursing home death: a systematic review and meta-analysis.

PubMed

Costa, Vania; Earle, Craig C; Esplen, Mary Jane; Fowler, Robert; Goldman, Russell; Grossman, Daphna; Levin, Leslie; Manuel, Douglas G; Sharkey, Shirlee; Tanuseputro, Peter; You, John J

2016-01-20

Most Canadians die in hospital, and yet, many express a preference to die at home. Place of death is the result of the interaction among sociodemographic, illness- and healthcare-related factors. Although home death is sometimes considered a potential indicator of end-of-life/palliative care quality, some determinants of place of death are more modifiable than others. The objective of this systematic review was to evaluate the determinants of home and nursing home death in adult patients diagnosed with an advanced, life-limiting illness. A systematic literature search was performed for studies in English published from January 1, 2004 to September 24, 2013 that evaluated the determinants of home or nursing home death compared to hospital death in adult patients with an advanced, life-limiting condition. The adjusted odds ratios, relative risks, and 95% confidence intervals of each determinant were extracted from the studies. Meta-analyses were performed if appropriate. The quality of individual studies was assessed using the Newcastle-Ottawa scale and the body of evidence was assessed according to the GRADE Working Group criteria. Of the 5,900 citations identified, 26 retrospective cohort studies were eligible. The risk of bias in the studies identified was considered low. Factors associated with an increased likelihood of home versus hospital death included multidisciplinary home palliative care, preference for home death, cancer as opposed to other diagnoses, early referral to palliative care, not living alone, having a caregiver, and the caregiver's coping skills. Knowledge about the determinants of place of death can be used to inform care planning between healthcare providers, patients and family members regarding the feasibility of dying in the preferred location and may help explain the incongruence between preferred and actual place of death. Modifiable factors such as early referral to palliative care, presence of a multidisciplinary home palliative care team were identified, which may be amenable to interventions that improve the likelihood of a patient dying in the preferred location. Place of death may not be a very good indicator of the quality of end-of-life/palliative care since it is determined by multiple factors and is therefore dependent on individual circumstances.

Experimental classroom games: a didactic tool in palliative care.

PubMed

Alonso, Ana Isabel López; Martínez, Maria Elena Fernández; Presa, Cristina Liébana; Casares, Ana Maria Vázquez; González, Maria Paz Castro

2018-01-01

Objective To evaluate the effect of a games-based intervention on palliative care nursing students' scores on the Collett-Lester Fear of Death Scale. The challenge was to innovate and integrate grief-related theory and experiences into the classroom. Method Quasi-experimental study. Before and after the games-based intervention, 101 and 111 students completed the questionnaires, respectively. The intervention was performed in the context of a palliative care class taught during the first semester of the third year of the nursing programme. Results The students obtained moderate mean scores on the variable fear of death (between 14 and 19) at both time points (pre- and post-intervention). Both men and women indicated a heightened sense of fear post-intervention and a decrease in self-perceived emotional preparedness, which support the value of the games for exposing the student to situations that closely approximated reality. Conclusion The use of games as a didactic tool in the classroom context helped the students recognize the fear generated by proximity to death in the patient and family and in the student him- or herself.

Physician Perspectives on Palliative Care for Children With Neuroblastoma: An International Context.

PubMed

Balkin, Emily M; Thompson, Daria; Colson, K Ellicott; Lam, Catherine G; Matthay, Katherine K

2016-05-01

Studies have shown that children with cancer globally lack access to palliative care. Little is known regarding physicians' perceptions of palliative care, treatment access, and self-reported competence in providing palliative care. Members of the Global Neuroblastoma Network (online tumor board) were surveyed. Eighty-three respondents met inclusion criteria; 53 (64%) completed the survey. Most respondents trained in high-income countries (HIC) but practice in low- and middle-income countries (LMIC), and care for more than five patients with neuroblastoma annually. WHO Essential Medicines in palliative care varied in availability, with incomplete access across LMIC centers. Nonpharmacologic therapies were inconsistently available. Contrary to international definitions, 17% of respondents inappropriately considered palliative care as that initiated only after curative therapy is stopped. Mean physician competence composite score (Likert scale 1-5, 5 = very competent) in providing symptomatic relief and palliative care across phases of care was 2.93 (95% CI 2.71-3.22). Physicians reported significantly greater competence in symptom management during cure-directed therapy than during end-of-life (P = 0.02) or when patients are actively dying (P = 0.007). Practicing in HIC, prior palliative care training, having access to radiotherapy, and not having to turn patients away due to bed shortages were significantly predictive of perceived competence in providing palliative care at end of life. An international sample identified gaps in treatment and palliative care service availability, in understanding the definition of palliative care, and in self-reported competence in providing palliative care. Increased perceived competence was associated with training, which supports the need for increased palliative care education and advocacy, especially in LMIC. © 2016 Wiley Periodicals, Inc.

Palliative Surgery in Treating Painful Metastases of the Upper Cervical Spine

PubMed Central

Wu, Xinghuo; Ye, Zhewei; Pu, Feifei; Chen, Songfeng; Wang, Baichuan; Zhang, Zhicai; Yang, Cao; Yang, Shuhua; Shao, Zengwu

2016-01-01

Abstract Increased incidence of upper cervical metastases and higher life expectancy resulted in higher operative rates in patients. The purpose of this study was to explore the methods and the clinical outcomes of palliative surgery for cervical spinal metastases. A systematic review of a 15-case series of upper cervical metastases treated with palliative surgery was performed. All cases underwent palliative surgery, including anterior tumor resection and internal fixation in 3 cases, posterior tumor resection and internal fixation in 10 cases, and combined anterior and posterior tumor resection and internal fixation in 2 cases. Patients were followed-up clinically and radiologically after the operation, and visual analog scale (VAS) and activities of daily living scores were calculated. In addition, a literature review was performed and patients with upper cervical spine metastases were analyzed. The mean follow-up period was 12.5 months (range, 3–26 months) in this consecutive case series. The pain was substantially relieved in 93.3% (14/15) of the patients after the operation. The VAS and Japanese Orthopedic Association scores showed improved clinical outcomes, from 7.86 ± 1.72 and 11.13 ± 2.19 preoperatively to 2.13 ± 1.40 and 14.26 ± 3.03 postoperatively, respectively. The mean survival time was 9.5 months (range, 5–26 months). Dural tear occurred in 1 patient. Wound infections, instrumentation failure, and postoperative death were not observed. Among our cases and other cases reported in the literature, 72% of the patients were treated with simple anterior or posterior operation, and only 12% of the patients (3/25) underwent complex combined anterior and posterior operation. Metastatic upper cervical spine disease is not a rare occurrence. Balancing the perspective of patients on palliative surgery concerning the clinical benefits of operation versus its operative risks can assist the decision for surgery. PMID:27149472

Attrition rates, reasons, and predictive factors in supportive care and palliative oncology clinical trials.

PubMed

Hui, David; Glitza, Isabella; Chisholm, Gary; Yennu, Sriram; Bruera, Eduardo

2013-03-01

Attrition is common among supportive care/palliative oncology clinical trials. However, to the authors' knowledge, few studies to date have documented the reasons and predictors for dropout. In the current study, the authors' objective was to determine the rate, reasons, and factors associated with attrition both before reaching the primary endpoint and at the end of the study. A review of all prospective interventional supportive care/palliative oncology trials conducted in the Department of Palliative Care and Rehabilitation Medicine at The University of Texas MD Anderson Cancer Center in Houston between 1999 and 2011 was performed. Patient and study characteristics and attrition data were extracted. A total of 1214 patients were included in 18 clinical trials. The median age of the patients was 60 years. Approximately 41% had an Eastern Cooperative Oncology Group performance status of ≥ 3, a median Edmonton Symptom Assessment Scale (ESAS) for fatigue of 7 of 10, and a median ESAS for dyspnea of 2 of 10. The attrition rate was 26% (95% confidence interval [95% CI], 23%-28%) for the primary endpoint and 44% (95% CI, 41%-47%) for the end of the study. Common reasons for primary endpoint dropout were symptom burden (21%), patient preference (15%), hospitalization (10%), and death (6%). Primary endpoint attrition was associated with a higher baseline intensity of fatigue (odds ratio [OR], 1.10 per point; P = .01) and a longer study duration (P = .04). End-of-study attrition was associated with higher baseline levels of dyspnea (OR, 1.06; P = .01), fatigue (OR, 1.08; P = .01), Hispanic race (OR, 1.87; P = .002), higher level of education (P = .02), longer study duration (P = .01), and outpatient studies (P = 0.05). The attrition rate was high in supportive care/palliative oncology clinical trials, and was associated with various patient characteristics and a high baseline symptom burden. These findings have implications for future clinical trial design including eligibility criteria and sample size calculation. Copyright © 2012 American Cancer Society.

Screening for depression in advanced disease: psychometric properties, sensitivity, and specificity of two items of the Palliative Care Outcome Scale (POS).

PubMed

Antunes, Bárbara; Murtagh, Fliss; Bausewein, Claudia; Harding, Richard; Higginson, Irene J

2015-02-01

Depression is common among patients with advanced disease but often difficult to detect. To assess the Palliative care Outcome Scale (POS) (10 items) against the Geriatric Depression Scale (GDS)-10 total score and the Hospital Anxiety and Depression Scale (HADS)-Depression subscale total score and determine if the POS has appropriate items to screen for depression among people with advanced disease. This was a secondary analysis performed on five studies. Four psychometric properties were assessed: data quality, scaling assumptions, acceptability, and internal consistency (reliability). Receiver operating characteristic (ROC) curves were used to determine the area under the curve. Sensitivity, specificity, positive and negative predictive values, false positive and negative rates, and positive and negative likelihood ratios were computed. The overall sample had 416 patients from Germany and England: 144 had cancer and 267 had nonmalignant conditions. Prevalence of depression across the sample was 17.5%. Floor and ceiling effects were rare. Cronbach's alpha coefficients for POS items 7 and 8 summed, GDS-10 and HADS-Depression items varied: 0.61 (heart failure) and 0.80 (cancer). Two items combined (Item 7-feeling depressed and Item 8-feeling good about yourself) consistently presented the highest area under the ROC curve, ranging from 0.76 (95% CI 0.60, 0.93) (Germany, lung cancer) to 0.97 (95% CI 0.91, 1.0) (heart failure), highest negative predictive value, and lowest false negative rate. For the overall sample, the cutoff 2/3 presented a negative predictive value of 89.4% (95% CI 84.7, 92.8) and false negative rate of 10.6 (95% CI 7.2, 15.3). POS items 7 and 8 summed are potentially useful to screen for depression in advanced disease populations. Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

The Richmond Agitation-Sedation Scale modified for palliative care inpatients (RASS-PAL): a pilot study exploring validity and feasibility in clinical practice

PubMed Central

2014-01-01

Background The Richmond Agitation-Sedation Scale (RASS), which assesses level of sedation and agitation, is a simple observational instrument which was developed and validated for the intensive care setting. Although used and recommended in palliative care settings, further validation is required in this patient population. The aim of this study was to explore the validity and feasibility of a version of the RASS modified for palliative care populations (RASS-PAL). Methods A prospective study, using a mixed methods approach, was conducted. Thirteen health care professionals (physicians and nurses) working in an acute palliative care unit assessed ten consecutive patients with an agitated delirium or receiving palliative sedation. Patients were assessed at five designated time points using the RASS-PAL. Health care professionals completed a short survey and data from semi-structured interviews was analyzed using thematic analysis. Results The inter-rater intraclass correlation coefficient range of the RASS-PAL was 0.84 to 0.98 for the five time points. Professionals agreed that the tool was useful for assessing sedation and was easy to use. Its role in monitoring delirium however was deemed problematic. Professionals felt that it may assist interprofessional communication. The need for formal education on why and how to use the instrument was highlighted. Conclusion This study provides preliminary validity evidence for the use of the RASS-PAL by physicians and nurses working in a palliative care unit, specifically for assessing sedation and agitation levels in the management of palliative sedation. Further validity evidence should be sought, particularly in the context of assessing delirium. PMID:24684942

Prescription Pattern of Analgesic Drugs for Patients Receiving Palliative Care in a Teaching Hospital in India

PubMed Central

Menezes, Vishma Hydie; Nair, Shoba N; Soumya, MS; Tarey, SD

2016-01-01

Background: Drugs used in the palliative care unit for managing symptoms are major contributors toward the expenditure occurring in palliative care. This study was conducted to understand the prescription pattern of analgesic drugs in the patients who are receiving palliative care in a teaching hospital in India by a retrospective study of case records. Methods: Case record based, retrospective, descriptive study was conducted at the Pain and Palliative Care Department of St. John's Medical College Hospital, Bengaluru. Case record files of all patients referred to Pain and Palliative Care Department for the treatment of pain in the year of 2012 were studied. Patients’ age, gender, diagnoses, numerical pain rating scale (0–10), drugs prescribed, dosage, frequency, route of administration were recorded. The difference in drug utilization between the genders was done using Chi-square test. Data were collected from 502 patients of which 280 (56%) were males and 222 (44%) were females. Twelve percent of patients had mild pain (1–3), 34% had moderate pain (4–6), and 54% had severe pain (7–10). The most commonly used analgesic drugs were opioids (47%), followed by nonsteroidal anti-inflammatory drugs (36%). The opioids used were tramadol (56%), and morphine (38%). Ninety percent of patients with numerical pain scale more than 6 received morphine. There was no difference in analgesic drug utilization with regards to gender. Prescription pattern differed depending on the severity of pain. Opioids were the most commonly used drugs for pain management. Conclusion: The study shows that prescription pattern in palliative care unit of this hospital was in accordance with WHO pain management guidelines. The study showed the current trend in prescription of analgesic drugs in the teaching hospital where the study was conducted. PMID:26962282

Online palliative care and oncology patient education resources through Google: Do they meet national health literacy recommendations?

PubMed

Prabhu, Arpan V; Crihalmeanu, Tudor; Hansberry, David R; Agarwal, Nitin; Glaser, Christine; Clump, David A; Heron, Dwight E; Beriwal, Sushil

The Google search engine is a resource commonly used by patients to access health-related patient education information. The American Medical Association and National Institutes of Health recommend that patient education resources be written at a level between the third and seventh grade reading levels. We assessed the readability levels of online palliative care patient education resources using 10 readability algorithms widely accepted in the medical literature. In October 2016, searches were conducted for 10 individual terms pertaining to palliative care and oncology using the Google search engine; the first 10 articles written for the public for each term were downloaded for a total of 100 articles. The terms included palliative care, hospice, advance directive, cancer pain management, treatment of metastatic disease, treatment of brain metastasis, treatment of bone metastasis, palliative radiation therapy, palliative chemotherapy, and end-of-life care. We determined the average reading level of the articles by readability scale and Web site domain. Nine readability assessments with scores equivalent to academic grade level found that the 100 palliative care education articles were collectively written at a 12.1 reading level (standard deviation, 2.1; range, 7.6-17.3). Zero articles were written below a seventh grade level. Forty-nine (49%) articles were written above a high school graduate reading level. The Flesch Reading Ease scale classified the articles as "difficult" to read with a score of 45.6 of 100. The articles were collected from 62 Web site domains. Seven domains were accessed 3 or more times; among these, www.mskcc.org had the highest average reading level at a 14.5 grade level (standard deviation, 1.4; range, 13.4-16.1). Most palliative care education articles readily available on Google are written above national health literacy recommendations. There is need to revise these resources to allow patients and their families to derive the most benefit from these materials. Copyright © 2017 729. Published by Elsevier Inc. All rights reserved.

The sense of security in care--Relatives' Evaluation instrument: its development and presentation.

PubMed

Krevers, Barbro; Milberg, Anna

2015-03-01

Relatives' sense of security in their family members' palliative home care is important, and a valid and reliable instrument is needed to measure this. The aim of this article is to report the development, structure, and psychometric properties of a new instrument, the Sense of Security in Care--Relatives' Evaluation (SEC-R), in palliative home care. Instrument development was based on a previous study and review of the literature; 213 relatives (55% women) of patients in palliative home care were recruited (response rate 73%) and participated in a structured interview based on a questionnaire. Principal component analysis (PCA) was used to identify subscales. The construction was tested in correlation with other scales and questions representing concepts expected to be related to sense of security in care. The PCA resulted in three subscales, namely care interaction, mastery and patient situation, which had an explained variance of 53%. Internal consistency of the subscales ranged from 0.76 to 0.78. The final instrument comprises 17 items. The scales were associated with the quality-of-care process and the relatives' situation, perceived health, quality of life, stress, general sense of security, and general sense of security in care. The SEC-R provides a three-component assessment of palliative home care settings using valid and reliable scales associated with other concepts. The SEC-R is a manageable means of assessment that may contribute to quality-of-care measures and to further research on relatives' sense of security in care. Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Attachment orientations of Greek cancer patients in palliative care. A validation study of the Experiences in Close Relationships scale (ECR-M16).

PubMed

Tsilika, Eleni; Parpa, Efi; Galanopoulou, Natasa; Gennimata, Vasiliki; Mosa, Eftychia; Galanos, Antonis; Mystakidou, Kyriaki

2016-01-01

Health-care professionals may serve as attachment figures, nevertheless little research has been made in the palliative context. The psychometric properties of the brief ECR-M16 in Greek cancer patients were explored. The ECR-M16 was translated into Greek (G-ECR-M16), and was administered to 100 patients before starting palliative care and 7 days later to test its stability. Patients (N=35) also completed the EORTC QLQ-C30 scales. Cronbach's alphas for the discomfort for closeness, anxiety and avoidance scales were 0.871, 0.762, and 0.761, respectively. Test-retest reliability was very satisfactory (p< 0.0005). Factor analysis yielded three factors (58.75% of the variance). Known-groups validity showed that discomfort with closeness had a statistically significant correlation with advanced disease stage (p=0.022). The G-ECR-M16 is a valid research tool for the attachment patterns' impact in Greek cancer patients.

"There is still so much ahead of us"-family functioning in families of palliative cancer patients.

PubMed

Kühne, Franziska; Krattenmacher, Thomas; Bergelt, Corinna; Beierlein, Volker; Herzog, Wolfgang; V Klitzing, Kai; Weschenfelder-Stachwitz, Heike; Romer, Georg; Möller, Birgit

2013-06-01

Adopting a systems approach, parental cancer has its impact on patients, spouses, and dependent children. The purpose of the current study was to examine family functioning dependent on parental disease stage and on family member perspective in families of cancer patients with adolescent children. The cross-sectional study was conducted within a German multisite research project of families before their first child-centered counseling encounter. The sample comprised individuals nested within N = 169 families. Analyses performed included analysis of covariance (ANCOVA) and intraclass correlation. Open answers were analyzed following quantitative content analysis procedures. Between 15% and 36% of family members reported dysfunctional general functioning scores. Parents indicated more dysfunctional scores on the Family Assessment Device scale Roles, and adolescents more dysfunctional Communication scores. Regarding assessment of family functioning, there was higher agreement in families with parents in a palliative situation. For adolescents with parents in palliation, incidents because of the disease tend to become more dominant, and spending time with the family tends to become even more important. As our study pointed out, parental cancer, and especially parental palliative disease, is associated with both perceived critical and positive aspects in family functioning. Supporting families in these concerns as well as encouraging perceptions of positive aspects are important components of psycho-oncological interventions for families with dependent children. PsycINFO Database Record (c) 2013 APA, all rights reserved.

Palliative Care Exposure in Internal Medicine Residency Education: A Survey of ACGME Internal Medicine Program Directors.

PubMed

Edwards, Asher; Nam, Samuel

2018-01-01

As the baby boomer generation ages, the need for palliative care services will be paramount and yet training for palliative care physicians is currently inadequate to meet the current palliative care needs. Nonspecialty-trained physicians will need to supplement the gap between supply and demand. Yet, no uniform guidelines exist for the training of internal medicine residents in palliative care. To our knowledge, no systematic study has been performed to evaluate how internal medicine residencies currently integrate palliative care into their training. In this study, we surveyed 338 Accreditation Council for Graduate Medical Education-accredited internal medicine program directors. We queried how palliative care was integrated into their training programs. The vast majority of respondents felt that palliative care training was "very important" (87.5%) and 75.9% of respondents offered some kind of palliative care rotation, often with a multidisciplinary approach. Moving forward, we are hopeful that the data provided from our survey will act as a launching point for more formal investigations into palliative care education for internal medicine residents. Concurrently, policy makers should aid in palliative care instruction by formalizing required palliative care training for internal medicine residents.

Palliative care in Japan: a review focusing on care delivery system.

PubMed

Morita, Tatsuya; Kizawa, Yoshiyuki

2013-06-01

Providing palliative care in Japan is one of the most important health issues. Understanding palliative care delivery systems of other countries is useful when developing and modifying palliative care systems worldwide. This review summarizes the current status of palliative care in Japan, focusing on the structure and process development. Palliative care units and hospital palliative care consultation teams are the two main specialized palliative care services in Japan. The number of palliative care units is 215 (involved in 8.4% of all cancer deaths), and there are approximately 500 hospital palliative care teams. Conversely, specialized home care services are one of the most undeveloped areas in Japan. However, the government has been trying to develop more efficient home care services through modifying laws, healthcare systems, and multiple educational and cooperative projects. The numbers of palliative care specialists are increasing across all disciplines: cancer pain nurses (1365), palliative care nurses (1100), palliative care physicians (646), and palliative care pharmacists (238). Postgraduate education for physicians is performed via the special nationwide efforts of the Palliative care Emphasis program on symptom management and Assessment for Continuous medical Education (PEACE) project - a 2-day program adopting a trainer-trainee strategy. Over 30,000 physicians have participated in the PEACE program. A total of 1298 and 544 physicians have completed a trainer course for palliative medicine and psycho-oncology, respectively. Multiple structure and process evaluation, bereaved family surveys in palliative care units, and patient and family evaluation in the regional palliative care program indicate many improvements. Palliative care in Japan has progressed rapidly, and the Cancer Control Act has played a very important role in developing palliative medicine. Challenges include developing a structure for palliative care in the community or regional palliative care programs, establishing a method to measure and improve the quality of palliative care at a national level, developing evidence-based medicine and policy making, and palliative care for the noncancerous population.

Elderly Patients With Painful Bone Metastases Should be Offered Palliative Radiotherapy

DOE Office of Scientific and Technical Information (OSTI.GOV)

Campos, Sarah; Presutti, Roseanna; Zhang Liying

2010-04-15

Purpose: To investigate the efficacy of palliative radiotherapy (RT) in relieving metastatic bone pain in elderly patients. Methods and Materials: The response to RT for palliation of metastatic bone pain was evaluated from a prospective database of 558 patients between 1999 and 2008. The pain scores and analgesic intake were used to calculate the response according to the International Bone Metastases Consensus Working Party palliative RT endpoints. Subgroup analyses for age and other demographic information were performed. Results: No significant difference was found in the response rate in patients aged >=65, >=70, and >=75 years compared with younger patients atmore » 1, 2, or 3 months after RT. The response was found to be significantly related to the performance status. Conclusion: Age alone did not affect the response to palliative RT for bone metastases. Elderly patients should be referred for palliative RT for their painful bone metastases, regardless of age, because they receive equal benefit from the treatment.« less

Effects of facilitated family case conferencing for advanced dementia: A cluster randomised clinical trial

PubMed Central

2017-01-01

Background Palliative care planning for nursing home residents with advanced dementia is often suboptimal. This study compared effects of facilitated case conferencing (FCC) with usual care (UC) on end-of-life care. Methods A two arm parallel cluster randomised controlled trial was conducted. The sample included people with advanced dementia from 20 Australian nursing homes and their families and professional caregivers. In each intervention nursing home (n = 10), Palliative Care Planning Coordinators (PCPCs) facilitated family case conferences and trained staff in person-centred palliative care for 16 hours per week over 18 months. The primary outcome was family-rated quality of end-of-life care (End-of-Life Dementia [EOLD] Scales). Secondary outcomes included nurse-rated EOLD scales, resident quality of life (Quality of Life in Late-stage Dementia [QUALID]) and quality of care over the last month of life (pharmacological/non-pharmacological palliative strategies, hospitalization or inappropriate interventions). Results Two-hundred-eighty-six people with advanced dementia took part but only 131 died (64 in UC and 67 in FCC which was fewer than anticipated), rendering the primary analysis under-powered with no group effect seen in EOLD scales. Significant differences in pharmacological (P < 0.01) and non-pharmacological (P < 0.05) palliative management in last month of life were seen. Intercurrent illness was associated with lower family-rated EOLD Satisfaction with Care (coefficient 2.97, P < 0.05) and lower staff-rated EOLD Comfort Assessment with Dying (coefficient 4.37, P < 0.01). Per protocol analyses showed positive relationships between EOLD and staff hours to bed ratios, proportion of residents with dementia and staff attitudes. Conclusion FCC facilitates a palliative approach to care. Future trials of case conferencing should consider outcomes and processes regarding decision making and planning for anticipated events and acute illness. Trial registration Australian New Zealand Clinical Trial Registry ACTRN12612001164886 PMID:28786995

Spiritual well-being of Italian advanced cancer patients in the home palliative care setting.

PubMed

Martoni, A A; Varani, S; Peghetti, B; Roganti, D; Volpicella, E; Pannuti, R; Pannuti, F

2017-07-01

This study evaluates the spiritual well-being (SpWB) in very advanced cancer patients assisted by the home palliative care program of ANT Foundation, a no-profit Italian organisation. SpWB was assessed by the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being Scale (FACIT-Sp12), including Meaning, Peace, and Faith subscales. The quality-of-life (QoL) was evaluated by using the Functional Assessment of Cancer Therapy-General scale. Questionnaires were distributed to 1,055 patients and 683 were compiled and evaluable for analysis. The mean scores of FACIT-Sp12 as well as of QoL were notably lower than reference values for cancer survivors. The FACIT-Sp12 score was higher in patients with less impaired Karnofsky Performance Status, fully participating in religious rituals and living in central Italy. A high Pearson's correlation was found between QoL and FACIT-Sp12 (r = .60), Peace (r = .71) and Meaning (r = .52), while it was marginal for Faith (r = .27). The hierarchical regression analysis showed that FACIT-Sp12 is a significant predictor of QoL. The study suggests that Italian patients with advanced cancer assisted by expert multi-professional teams in the home palliative care setting have a low level of SpWB thereby highlighting the need for the integration of spiritual support as part of comprehensive cancer care. © 2017 John Wiley & Sons Ltd.

Palliative sedation in end-of-life care.

PubMed

Maltoni, Marco; Scarpi, Emanuela; Nanni, Oriana

2013-07-01

The aim of this review was to present and comment on recent data published on palliative sedation in palliative and end-of-life care. Palliative sedation is a medical procedure used to deal with the refractory symptoms occurring in the advanced stages of cancer. It has clinical, nursing, relational and ethical implications, making it a highly sensitive issue. Over the last 12 months, a number of authors have published interesting new findings on different areas of palliative sedation, that is prevalence, indications, monitoring, duration and choice of drugs. In particular, a clear definition of palliative sedation and of its more pronounced form, deep continuous sedation (DCS), has emerged. It has been confirmed that, when performed in the correct way and with the right aims, palliative sedation does not have a detrimental impact on survival. Recent findings confirm that palliative sedation is an integral part of a medical palliative care approach and is needed in certain clinical situations. It is a legitimate clinical practice from any ethical point of view. While oncologists should have a basic knowledge of the procedure, its in depth study is a core competency for palliative care physicians.

Barriers to providing palliative care in long-term care facilities

PubMed Central

Brazil, Kevin; Bédard, Michel; Krueger, Paul; Taniguchi, Alan; Kelley, Mary Lou; McAiney, Carrie; Justice, Christopher

2006-01-01

OBJECTIVE To assess challenges in providing palliative care in long-term care (LTC) facilities from the perspective of medical directors. DESIGN Cross-sectional mailed survey. A questionnaire was developed, reviewed, pilot-tested, and sent to 450 medical directors representing 531 LTC facilities. Responses were rated on 2 different 5-point scales. Descriptive analyses were conducted on all responses. SETTING All licensed LTC facilities in Ontario with designated medical directors. PARTICIPANTS Medical directors in the facilities. MAIN OUTCOME MEASURES Demographic and practice characteristics of physicians and facilities, importance of potential barriers to providing palliative care, strategies that could be helpful in providing palliative care, and the kind of training in palliative care respondents had received. RESULTS Two hundred seventy-five medical directors (61%) representing 302 LTC facilities (57%) responded to the survey. Potential barriers to providing palliative care were clustered into 3 groups: facility staff’s capacity to provide palliative care, education and support, and the need for external resources. Two thirds of respondents (67.1%) reported that inadequate staffing in their facilities was an important barrier to providing palliative care. Other barriers included inadequate financial reimbursement from the Ontario Health Insurance Program (58.5%), the heavy time commitment required (47.3%), and the lack of equipment in facilities (42.5%). No statistically significant relationship was found between geographic location or profit status of facilities and barriers to providing palliative care. Strategies respondents would use to improve provision of palliative care included continuing medical education (80.0%), protocols for assessing and monitoring pain (77.7%), finding ways to increase financial reimbursement for managing palliative care residents (72.1%), providing educational material for facility staff (70.7%), and providing practice guidelines related to assessing and managing palliative care patients (67.8%). CONCLUSION Medical directors in our study reported that their LTC facilities were inadequately staffed and lacked equipment. The study also highlighted the specialized role of medical directors, who identified continuing medical education as a key strategy for improving provision of palliative care. PMID:17327890

Barriers to providing palliative care in long-term care facilities.

PubMed

Brazil, Kevin; Bédard, Michel; Krueger, Paul; Taniguchi, Alan; Kelley, Mary Lou; McAiney, Carrie; Justice, Christopher

2006-04-01

To assess challenges in providing palliative care in long-term care (LTC) facilities from the perspective of medical directors. Cross-sectional mailed survey. A questionnaire was developed, reviewed, pilot-tested, and sent to 450 medical directors representing 531 LTC facilities. Responses were rated on 2 different 5-point scales. Descriptive analyses were conducted on all responses. All licensed LTC facilities in Ontario with designated medical directors. Medical directors in the facilities. Demographic and practice characteristics of physicians and facilities, importance of potential barriers to providing palliative care, strategies that could be helpful in providing palliative care, and the kind of training in palliative care respondents had received. Two hundred seventy-five medical directors (61%) representing 302 LTC facilities (57%) responded to the survey. Potential barriers to providing palliative care were clustered into 3 groups: facility staff's capacity to provide palliative care, education and support, and the need for external resources. Two thirds of respondents (67.1%) reported that inadequate staffing in their facilities was an important barrier to providing palliative care. Other barriers included inadequate financial reimbursement from the Ontario Health Insurance Program (58.5%), the heavy time commitment required (47.3%), and the lack of equipment in facilities (42.5%). No statistically significant relationship was found between geographic location or profit status of facilities and barriers to providing palliative care. Strategies respondents would use to improve provision of palliative care included continuing medical education (80.0%), protocols for assessing and monitoring pain (77.7%), finding ways to increase financial reimbursement for managing palliative care residents (72.1%), providing educational material for facility staff (70.7%), and providing practice guidelines related to assessing and managing palliative care patients (67.8%). Medical directors in our study reported that their LTC facilities were inadequately staffed and lacked equipment. The study also highlighted the specialized role of medical directors, who identified continuing medical education as a key strategy for improving provision of palliative care.

Spanish Validation of the Care Evaluation Scale for Measuring the Quality of Structure and Process of Palliative Care From the Family Perspective.

PubMed

Benitez-Rosario, Miguel Angel; Caceres-Miranda, Raquel; Aguirre-Jaime, Armando

2016-03-01

A reliable and valid measure of the structure and process of end-of-life care is important for improving the outcomes of care. This study evaluated the validity and reliability of the Spanish adaptation of a satisfaction tool of the Care Evaluation Scale (CES), which was developed in Japan to evaluate palliative care structure and process from the perspective of family members. Standard forward-backward translation and a pilot test were conducted. A multicenter survey was conducted with the relatives of patients admitted to palliative care units for symptom control. The dimensional structure was assessed using confirmatory factor analyses. Concurrent and discriminant validity were tested by correlation with the SERQVHOS, a Spanish hospital care satisfaction scale and with an 11-point rating scale on satisfaction with care. The reliability of the CES was tested by Cronbach α and by test-retest correlation. A total of 284 primary caregivers completed the CES, with low missing response rates. The results of the factor analysis suggested a six-factor solution explaining 69% of the total variance. The CES moderately correlated with the SERQVHOS and with the overall satisfaction scale (intraclass correlation coefficients of 0.66 and 0.44, respectively; P = 0.001). Cronbach α was 0.90 overall and ranged from 0.85 to 0.89 for subdomains. Intraclass correlation coefficient was 0.88 (P = 0.001) for test-retest analysis. The Spanish CES was found to be a reliable and valid measure of the satisfaction with end-of-life care structure and process from family members' perspectives. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Palliative Care and Health Care Utilization for Patients With End-Stage Liver Disease at the End of Life.

PubMed

Patel, Arpan A; Walling, Anne M; Ricks-Oddie, Joni; May, Folasade P; Saab, Sammy; Wenger, Neil

2017-10-01

There has been increased attention on ways to improve the quality of end-of-life care for patients with end-stage liver disease; however, there have been few reports of care experiences for patients during terminal hospitalizations. We analyzed data from a large national database to increase our understanding of palliative care for and health care utilization by patients with end-stage liver disease. We performed a cross-sectional, observational study to examine terminal hospitalizations of adults with decompensated cirrhosis using data from the National Inpatient Sample from 2009 through 2013. We collected data on palliative care consultation and total hospital costs, and performed multivariate regression analyses to identify factors associated with palliative care consultation. We also investigated whether consultation was associated with lower costs. Among hospitalized adults with terminal decompensated cirrhosis, 30.3% received palliative care; the mean cost per hospitalization was $48,551 ± $1142. Palliative care consultation increased annually, and was provided to 18.0% of patients in 2009 and to 36.6% of patients in 2013 (P < .05). The mean cost for the terminal hospitalization did not increase significantly ($47,969 in 2009 to $48,956 in 2013, P = .77). African Americans, Hispanics, Asians, and liver transplant candidates were less likely to receive palliative care, whereas care in large urban teaching hospitals was associated with a higher odds of receiving consultation. Palliative care was associated with lower procedure burden-after adjusting for other factors, palliative care was associated with a cost reduction of $10,062. Palliative care consultation for patients with end-stage liver disease increased from 2009 through 2013. Palliative care consultation during terminal hospitalizations is associated with lower costs and procedure burden. Future research should evaluate timing and effects of palliative care on quality of end-of-life care in this population. Copyright © 2017 AGA Institute. Published by Elsevier Inc. All rights reserved.

Comparison of legislation, regulations and national health strategies for palliative care in seven European countries (Results from the Europall Research Group): a descriptive study.

PubMed

Van Beek, Karen; Woitha, Kathrin; Ahmed, Nisar; Menten, Johan; Jaspers, Birgit; Engels, Yvonne; Ahmedzai, Sam H; Vissers, Kris; Hasselaar, Jeroen

2013-07-17

According to EU policy, anyone in need of palliative care should be able to have access to it. It is therefore important to investigate which palliative care topics are subject to legislation and regulations in Europe and how these are implemented in (national) health care plans. This paper aims to deliver a structured overview of the legislation, existing regulations and the different health care policies regarding palliative care in seven European countries. In 2008 an inventory of the organisation of palliative care was developed by the researchers of the Europall project. Included were two open questions about legislation, regulations, and health policy in palliative care. This questionnaire was completed using palliative care experts selected from Belgium, England, France, Germany, the Netherlands, Poland and Spain. Additionally, (grey) literature on palliative care health policy and regulations from the participating countries was collected to complete the inventory. Comparative analysis of country specific information was performed afterwards. In all countries palliative care regulations and policies existed (either in laws, royal decrees, or national policies). An explicit right to palliative care was mentioned in the Belgium, French and German law. In addition, access to palliative care was mentioned by all countries, varying from explicit regulations to policy intentions in national plans. Also, all countries had a national policy on palliative care, although sometimes mainly related to national cancer plans. Differences existed in policy regarding palliative care leave, advance directives, national funding, palliative care training, research, opioids and the role of volunteers. Although all included European countries have policies on palliative care, countries largely differ in the presence of legislation and regulations on palliative care as well as the included topics. European healthcare policy recommendations should support palliative care access across Europe.

Arrhythmias Following Comprehensive Stage II Surgical Palliation in Single Ventricle Patients.

PubMed

Wilhelm, Carolyn M; Paulus, Diane; Cua, Clifford L; Kertesz, Naomi J; Cheatham, John P; Galantowicz, Mark; Fernandez, Richard P

2016-03-01

Post-operative arrhythmias are common in pediatric patients following cardiac surgery. Following hybrid palliation in single ventricle patients, a comprehensive stage II palliation is performed. The incidence of arrhythmias in patients following comprehensive stage II palliation is unknown. The purpose of this study is to determine the incidence of arrhythmias following comprehensive stage II palliation. A single-center retrospective chart review was performed on all single ventricle patients undergoing a comprehensive stage II palliation from January 2010 to May 2014. Pre-operative, operative, and post-operative data were collected. A clinically significant arrhythmia was defined as an arrhythmia which led to cardiopulmonary resuscitation or required treatment with either pacing or antiarrhythmic medication. Statistical analysis was performed with Wilcoxon rank-sum test and Fisher's exact test with p < 0.05 significant. Forty-eight single ventricle patients were reviewed (32 hypoplastic left heart syndrome, 16 other single ventricle variants). Age at surgery was 185 ± 56 days. Cardiopulmonary bypass time was 259 ± 45 min. Average vasoactive-inotropic score was 5.97 ± 7.58. Six patients (12.5 %) had clinically significant arrhythmias: four sinus bradycardia, one 2:1 atrioventricular block, and one slow junctional rhythm. No tachyarrhythmias were documented for this patient population. Presence of arrhythmia was associated with elevated lactate (p = 0.04) and cardiac arrest (p = 0.002). Following comprehensive stage II palliation, single ventricle patients are at low risk for development of tachyarrhythmias. The most frequent arrhythmia seen in these patients was sinus bradycardia associated with respiratory compromise.

The price of palliative care: toward a complete accounting of costs and benefits.

PubMed

Boni-Saenz, Alexander A; Dranove, David; Emanuel, Linda L; Lo Sasso, Anthony T

2005-02-01

In this article, currently accepted standards for cost-benefit analysis of health care interventions are outlined, and a framework to evaluate palliative care within these standards is provided. Recent publications on the economic implications of palliative care are reviewed, which are only the "tip of the iceberg" of the potential costs and benefits. Using this framework, the authors offer guidelines for performing comprehensive cost-benefit analyses of palliative care and conclude that many of the issues beneath the surface may be substantial and deserving of closer scrutiny. Methods for gathering relevant cost-benefit information are detailed, along with potential obstacles to implementation. This approach is applicable to palliative care in general, including palliative care for elders.

Unmet Needs of African Americans and Whites at the Time of Palliative Care Consultation.

PubMed

Kamal, Arif H; Bull, Janet; Wolf, Steven P; Portman, Diane; Strand, Jacob; Johnson, Kimberly S

2017-06-01

Differences among patient populations that present to consultative palliative care are not known. Such an appreciation would inform health-care delivery tailored to unique populations. We aimed to compare characteristics and palliative care needs of African Americans (AAs) and whites during initial palliative care consultation. We analyzed patient-reported, clinician-entered clinical encounter data from a large, multisite community-based, nonhospice palliative care collaborative. We included first specialty palliative care consultations from January 1, 2014, to July 2, 2015, across 15 sites within the Global Palliative Care Quality Alliance registry. Demographics, disease, performance status, advance care planning, and symptom prevalence/severity were compared. Of 775 patients, 12.9% (N = 100) were AA. African Americans were younger (63 vs 75.4 years, P < .0001). A larger proportion of AAs had a diagnosis of cancer (45.0% vs 36.3%, P = .09) and in the hospital (71% vs 61.8%, P = .07). African Americans were more likely to have a Palliative Performance Score of 0 to 30 (35.6% vs 23.7%, P = .049). Around 50% in both racial groups were full code; slightly more than 40% had an advance directive. Nearly two-thirds in both racial groups reported 3 or more symptoms of any severity; one-third reported 3 or more moderate or severe symptoms. A larger proportion of Africans than whites reported pain of any severity (66.0% vs 56.1%, P = .06). All patients present to palliative care consultations with significant symptom and advance care planning needs. Further research is needed to identify how to deliver palliative care: earlier, in noncancer conditions, and improve pain management in AA populations.

[Use of methylphenidate in palliative patients with asthenia: a review].

PubMed

Saralegui, A; Palacio, P; Royo, P

2013-09-06

Asthenia (or fatigue) is one of the most common symptoms in palliative patients. Methylphenidate is currently being assessed for treating this condition. A review of related literature published to date was performed, revealing methylphenidate to be a safe drug which could decrease fatigue in palliative patients with a tolerable side-effects profile.

A prospective outcomes analysis of palliative procedures performed for malignant intestinal obstruction due to recurrent ovarian cancer.

PubMed

Chi, Dennis S; Phaëton, Rebecca; Miner, Thomas J; Kardos, Steven V; Diaz, John P; Leitao, Mario M; Gardner, Ginger; Huh, Jae; Tew, William P; Konner, Jason A; Sonoda, Yukio; Abu-Rustum, Nadeem R; Barakat, Richard R; Jaques, David P

2009-08-01

To obtain prospective outcomes data on patients (pts) undergoing palliative operative or endoscopic procedures for malignant bowel obstruction due to recurrent ovarian cancer. An institutional study was conducted from July 2002 to July 2003 to prospectively identify pts who underwent an operative or endoscopic procedure to palliate the symptoms of advanced cancer. This report focuses on pts with malignant bowel obstruction due to recurrent ovarian cancer. Procedures performed with an upper or lower gastrointestinal (GI) endoscope were considered "endoscopic." All other cases were classified as "operative." Following the procedure, the presence or absence of symptoms was determined and followed over time. All pts were followed until death. Palliative interventions were performed on 74 gynecologic oncology pts during the study period, of which 26 (35%) were for malignant GI obstruction due to recurrent ovarian cancer. The site of obstruction was small bowel in 14 (54%) cases and large bowel in 12 (46%) cases. Palliative procedures were operative in 14 (54%) pts and endoscopic in the other 12 (46%). Overall, symptomatic improvement or resolution within 30 days was achieved in 23 (88%) of 26 patients, with 1 (4%) postprocedure mortality. At 60 days, 10 (71%) of 14 pts who underwent operative procedures and 6 (50%) of 12 pts who had endoscopic procedures had symptom control. Median survival from the time of the palliative procedure was 191 days (range, 33-902) for those undergoing an operative procedure and 78 days (range, 18-284) for those undergoing an endoscopic procedure. Patients with malignant bowel obstructions due to recurrent ovarian cancer have a high likelihood of experiencing relief of symptoms with palliative procedures. Although recurrence of symptoms is common, durable palliation and extended survival are possible, especially in those patients selected for operative intervention.

Predictive model of complexity in early palliative care: a cohort of advanced cancer patients (PALCOM study).

PubMed

Tuca, Albert; Gómez-Martínez, Mónica; Prat, Aleix

2018-01-01

Model of early palliative care (PC) integrated in oncology is based on shared care from the diagnosis to the end of life and is mainly focused on patients with greater complexity. However, there is no definition or tools to evaluate PC complexity. The objectives of the study were to identify the factors influencing level determination of complexity, propose predictive models, and build a complexity scale of PC. We performed a prospective, observational, multicenter study in a cohort of advanced cancer patients with an estimated prognosis ≤ 6 months. An ad hoc structured evaluation including socio-demographic and clinical data, symptom burden, functional and cognitive status, psychosocial problems, and existential-ethic dilemmas was recorded systematically. According to this multidimensional evaluation, investigator classified patients as high, medium, or low palliative complexity, associated to need of basic or specialized PC. Logistic regression was used to identify the variables influencing determination of level of PC complexity and explore predictive models. We included 324 patients; 41% were classified as having high PC complexity and 42.9% as medium, both levels being associated with specialized PC. Variables influencing determination of PC complexity were as follows: high symptom burden (OR 3.19 95%CI: 1.72-6.17), difficult pain (OR 2.81 95%CI:1.64-4.9), functional status (OR 0.99 95%CI:0.98-0.9), and social-ethical existential risk factors (OR 3.11 95%CI:1.73-5.77). Logistic analysis of variables allowed construct a complexity model and structured scales (PALCOM 1 and 2) with high predictive value (AUC ROC 76%). This study provides a new model and tools to assess complexity in palliative care, which may be very useful to manage referral to specialized PC services, and agree intensity of their intervention in a model of early-shared care integrated in oncology.

Development of a brief measure of generativity and ego-integrity for use in palliative care settings.

PubMed

Vuksanovic, Dean; Dyck, Murray; Green, Heather

2015-10-01

Our aim was to develop and test a brief measure of generativity and ego-integrity that is suitable for use in palliative care settings. Two measures of generativity and ego-integrity were modified and combined to create a new 11-item questionnaire, which was then administered to 143 adults. A principal-component analysis with oblique rotation was performed in order to identify underlying components that can best account for variation in the 11 questionnaire items. The two-component solution was consistent with the items that, on conceptual grounds, were intended to comprise the two constructs assessed by the questionnaire. Results suggest that the selected 11 items were good representatives of the larger scales from which they were selected, and they are expected to provide a useful means of measuring these concepts near the end of life.

Palliative Care Processes Embedded in the ICU Workflow May Reserve Palliative Care Teams for Refractory Cases.

PubMed

Mun, Eluned; Umbarger, Lillian; Ceria-Ulep, Clementina; Nakatsuka, Craig

2018-01-01

Palliative Care Teams have been shown to be instrumental in the early identification of multiple aspects of advanced care planning. Despite an increased number of services to meet the rising consultation demand, it is conceivable that the numbers of palliative care consultations generated from an ICU alone could become overwhelming for an existing palliative care team. Improve end-of-life care in the ICU by incorporating basic palliative care processes into the daily routine ICU workflow, thereby reserving the palliative care team for refractory situations. A structured, palliative care, quality-improvement program was implemented and evaluated in the ICU at Kaiser Permanente Medical Center in Hawaii. This included selecting trigger criteria, a care model, forming guidelines, and developing evaluation criteria. These included the early identification of the multiple features of advanced care planning, numbers of proactive ICU and palliative care family meetings, and changes in code status and treatment upon completion of either meeting. Early identification of Goals-of-Care, advance directives, and code status by the ICU staff led to a proactive ICU family meeting with resultant increases in changes in code status and treatment. The numbers of palliative care consultations also rose, but not significantly. Palliative care processes could be incorporated into a daily ICU workflow allowing for integration of aspects of advanced care planning to be identified in a systematic and proactive manner. This reserved the palliative care team for situations when palliative care efforts performed by the ICU staff were ineffective.

Assessment of an interprofessional online curriculum for palliative care communication training.

PubMed

Wittenberg-Lyles, Elaine; Goldsmith, Joy; Ferrell, Betty; Burchett, Molly

2014-04-01

Curricular changes to palliative care communication training are needed in order to accommodate a variety of learners, especially in lieu of the projected national shortage of hospice and palliative medicine physicians and nurses. This study assessed the utility of a palliative care communication curriculum offered through an online platform and also examined health care professionals' clinical communication experiences related to palliative care topics. Four of the seven modules of the COMFORT communication curriculum were made available online, and participant assessments and knowledge skills were measured. Modules were completed and assessed by 177 participants, including 105 nurses, 25 physicians, and a category of 'other' disciplines totaling 47. Premodule surveys consisted of closed-ended items developed by the interdisciplinary research team. Postcurriculum evaluation and knowledge quizzes were used to assess program effectiveness. Among all participants, end-of-life care and recurrence of disease were considered the most challenging communication contexts and discussion about treatment options the least challenging. Mean responses to postcurriculum evaluation for all modules across nurse and physician participants was greater than 4 on a scale of 1 to 5. This study identifies the COMFORT communication curriculum as an effective online curricular tool to teach multiple disciplines specific palliative care communication.

Association Between Palliative Care and Patient and Caregiver Outcomes: A Systematic Review and Meta-analysis.

PubMed

Kavalieratos, Dio; Corbelli, Jennifer; Zhang, Di; Dionne-Odom, J Nicholas; Ernecoff, Natalie C; Hanmer, Janel; Hoydich, Zachariah P; Ikejiani, Dara Z; Klein-Fedyshin, Michele; Zimmermann, Camilla; Morton, Sally C; Arnold, Robert M; Heller, Lucas; Schenker, Yael

2016-11-22

The use of palliative care programs and the number of trials assessing their effectiveness have increased. To determine the association of palliative care with quality of life (QOL), symptom burden, survival, and other outcomes for people with life-limiting illness and for their caregivers. MEDLINE, EMBASE, CINAHL, and Cochrane CENTRAL to July 2016. Randomized clinical trials of palliative care interventions in adults with life-limiting illness. Two reviewers independently extracted data. Narrative synthesis was conducted for all trials. Quality of life, symptom burden, and survival were analyzed using random-effects meta-analysis, with estimates of QOL translated to units of the Functional Assessment of Chronic Illness Therapy-palliative care scale (FACIT-Pal) instrument (range, 0-184 [worst-best]; minimal clinically important difference [MCID], 9 points); and symptom burden translated to the Edmonton Symptom Assessment Scale (ESAS) (range, 0-90 [best-worst]; MCID, 5.7 points). Quality of life, symptom burden, survival, mood, advance care planning, site of death, health care satisfaction, resource utilization, and health care expenditures. Forty-three RCTs provided data on 12 731 patients (mean age, 67 years) and 2479 caregivers. Thirty-five trials used usual care as the control, and 14 took place in the ambulatory setting. In the meta-analysis, palliative care was associated with statistically and clinically significant improvements in patient QOL at the 1- to 3-month follow-up (standardized mean difference, 0.46; 95% CI, 0.08 to 0.83; FACIT-Pal mean difference, 11.36] and symptom burden at the 1- to 3-month follow-up (standardized mean difference, -0.66; 95% CI, -1.25 to -0.07; ESAS mean difference, -10.30). When analyses were limited to trials at low risk of bias (n = 5), the association between palliative care and QOL was attenuated but remained statistically significant (standardized mean difference, 0.20; 95% CI, 0.06 to 0.34; FACIT-Pal mean difference, 4.94), whereas the association with symptom burden was not statistically significant (standardized mean difference, -0.21; 95% CI, -0.42 to 0.00; ESAS mean difference, -3.28). There was no association between palliative care and survival (hazard ratio, 0.90; 95% CI, 0.69 to 1.17). Palliative care was associated consistently with improvements in advance care planning, patient and caregiver satisfaction, and lower health care utilization. Evidence of associations with other outcomes was mixed. In this meta-analysis, palliative care interventions were associated with improvements in patient QOL and symptom burden. Findings for caregiver outcomes were inconsistent. However, many associations were no longer significant when limited to trials at low risk of bias, and there was no significant association between palliative care and survival.

Identification and characteristics of patients with palliative care needs in Brazilian primary care.

PubMed

Marcucci, Fernando C I; Cabrera, Marcos A S; Perilla, Anamaria Baquero; Brun, Marilia Maroneze; de Barros, Eder Marcos L; Martins, Vanessa M; Rosenberg, John P; Yates, Patsy

2016-06-01

The Brazilian healthcare system offers universal coverage but lacks information about how patients with PC needs are serviced by its primary care program, Estratégia Saúde da Família (ESF). Cross-sectional study in community settings. Patients in ESF program were screened using a Palliative Care Screening Tool (PCST). Included patients were assessed with Karnofsky Performance Scale (KPS), Edmonton Symptom Assessment System (ESAS) and Palliative Care Outcome Scale (POS). Patients with PC needs are accessing the ESF program regardless of there being no specific PC support provided. From 238 patients identified, 73 (43 women, 30 men) were identified as having a need for PC, and the mean age was 77.18 (95 % Confidence Interval = ±2,78) years, with non-malignant neurologic conditions, such as dementia and cerebrovascular diseases, being the most common (53 % of all patients). Chronic conditions (2 or more years) were found in 70 % of these patients, with 71 % scoring 50 or less points in the KPS. Overall symptom intensity was low, with the exception of some cases with moderate and high score, and POS average score was 14.16 points (minimum = 4; maximum = 28). Most patients received medication and professional support through the primary care units, but limitations of services were identified, including lack of home visits and limited multi-professional approaches. Patients with PC needs were identified in ESF program. Basic health care support is provided but there is a lack of attention to some specific needs. PC policies and professional training should be implemented to improve this area.

Palliative Care in Heart Failure: The PAL-HF Randomized, Controlled Clinical Trial.

PubMed

Rogers, Joseph G; Patel, Chetan B; Mentz, Robert J; Granger, Bradi B; Steinhauser, Karen E; Fiuzat, Mona; Adams, Patricia A; Speck, Adam; Johnson, Kimberly S; Krishnamoorthy, Arun; Yang, Hongqiu; Anstrom, Kevin J; Dodson, Gwen C; Taylor, Donald H; Kirchner, Jerry L; Mark, Daniel B; O'Connor, Christopher M; Tulsky, James A

2017-07-18

Advanced heart failure (HF) is characterized by high morbidity and mortality. Conventional therapy may not sufficiently reduce patient suffering and maximize quality of life. The authors investigated whether an interdisciplinary palliative care intervention in addition to evidence-based HF care improves certain outcomes. The authors randomized 150 patients with advanced HF between August 15, 2012, and June 25, 2015, to usual care (UC) (n = 75) or UC plus a palliative care intervention (UC + PAL) (n = 75) at a single center. Primary endpoints were 2 quality-of-life measurements, the Kansas City Cardiomyopathy Questionnaire (KCCQ) overall summary and the Functional Assessment of Chronic Illness Therapy-Palliative Care scale (FACIT-Pal), assessed at 6 months. Secondary endpoints included assessments of depression and anxiety (measured via the Hospital Anxiety and Depression Scale [HADS]), spiritual well-being (measured via the FACIT-Spiritual Well-Being scale [FACIT-Sp]), hospitalizations, and mortality. Patients randomized to UC + PAL versus UC alone had clinically significant incremental improvement in KCCQ and FACIT-Pal scores from randomization to 6 months (KCCQ difference = 9.49 points, 95% confidence interval [CI]: 0.94 to 18.05, p = 0.030; FACIT-Pal difference = 11.77 points, 95% CI: 0.84 to 22.71, p = 0.035). Depression improved in UC + PAL patients (HADS-depression difference = -1.94 points; p = 0.020) versus UC-alone patients, with similar findings for anxiety (HADS-anxiety difference = -1.83 points; p = 0.048). Spiritual well-being was improved in UC + PAL versus UC-alone patients (FACIT-Sp difference = 3.98 points; p = 0.027). Randomization to UC + PAL did not affect rehospitalization or mortality. An interdisciplinary palliative care intervention in advanced HF patients showed consistently greater benefits in quality of life, anxiety, depression, and spiritual well-being compared with UC alone. (Palliative Care in Heart Failure [PAL-HF]; NCT01589601). Copyright © 2017 American College of Cardiology Foundation. Published by Elsevier Inc. All rights reserved.

Volunteer satisfaction and program evaluation at a pediatric hospice.

PubMed

Pascuet, Elena; Beauchemin, Lise; Vaillancourt, Régis; Cowin, Lloyd; Ni, Andy; Rattray, Marion

2012-05-01

Volunteers are essential to the functioning of palliative care programs and serve as important members of the hospice team. They devote much time, effort, and diverse skills and talent to enhance the quality of care at Roger's House--a pediatric palliative care hospice. To evaluate volunteering in a pediatric palliative care hospice and to assess the level of satisfaction from the perspective of hospice volunteers. A survey was sent to all active Roger's House volunteers. Questions were related to their demographics, their overall impression of their volunteering experience, and 47 closed (fixed-choice) statements, divided into 6 parts: 1) Orientation; 2) Training; 3) Feedback/Performance; 4) Communication; 5) Social Contacts; and 6) Value and Respect. Each statement was rated by the participants using a six-point Likert rating scale. Volunteers fully completing the survey were 159 online and 4 on paper, giving a response rate of 66%. The greater number (66, 40.5%) of respondents were 50 years or older and they were mostly female (141, 86.5%). Successes identified included the volunteers' orientation, training, and feedback and performance. Challenges identified included certain aspects of communication, social contacts, and respect/value for the volunteer. Volunteers at Roger's House are generally satisfied with their volunteer position and the environment in which they work. Greater insight into volunteer satisfaction and factors that bring feelings of reward and/or dissatisfaction to the volunteers have allowed Roger's House to identify informed and effective interventions to improve the quality of and satisfaction with the hospice volunteer program.

Comparison of legislation, regulations and national health strategies for palliative care in seven European countries (Results from the Europall Research Group): a descriptive study

PubMed Central

2013-01-01

Background According to EU policy, anyone in need of palliative care should be able to have access to it. It is therefore important to investigate which palliative care topics are subject to legislation and regulations in Europe and how these are implemented in (national) health care plans. This paper aims to deliver a structured overview of the legislation, existing regulations and the different health care policies regarding palliative care in seven European countries. Methods In 2008 an inventory of the organisation of palliative care was developed by the researchers of the Europall project. Included were two open questions about legislation, regulations, and health policy in palliative care. This questionnaire was completed using palliative care experts selected from Belgium, England, France, Germany, the Netherlands, Poland and Spain. Additionally, (grey) literature on palliative care health policy and regulations from the participating countries was collected to complete the inventory. Comparative analysis of country specific information was performed afterwards. Results In all countries palliative care regulations and policies existed (either in laws, royal decrees, or national policies). An explicit right to palliative care was mentioned in the Belgium, French and German law. In addition, access to palliative care was mentioned by all countries, varying from explicit regulations to policy intentions in national plans. Also, all countries had a national policy on palliative care, although sometimes mainly related to national cancer plans. Differences existed in policy regarding palliative care leave, advance directives, national funding, palliative care training, research, opioids and the role of volunteers. Conclusions Although all included European countries have policies on palliative care, countries largely differ in the presence of legislation and regulations on palliative care as well as the included topics. European healthcare policy recommendations should support palliative care access across Europe. PMID:23866928

Palliative Care Training in Surgical Oncology and Hepatobiliary Fellowships: A National Survey of Program Directors.

PubMed

Larrieux, Gregory; Wachi, Blake I; Miura, John T; Turaga, Kiran K; Christians, Kathleen K; Gamblin, T Clark; Peltier, Wendy L; Weissman, David E; Nattinger, Ann B; Johnston, Fabian M

2015-12-01

Despite previous literature affirming the importance of palliative care training in surgery, there is scarce literature about the readiness of Surgical Oncology and hepatopancreaticobiliary (HPB) fellows to provide such care. We performed the first nationally representative study of surgical fellowship program directors' assessment of palliative care education. The aim was to capture attitudes about the perception of palliative care and disparity between technical/clinical education and palliative care training. A survey originally used to assess surgical oncology and HPB surgery fellows' training in palliative care, was modified and sent to Program Directors of respective fellowships. The final survey consisted of 22 items and was completed online. Surveys were completed by 28 fellowship programs (70 % response rate). Only 60 % offered any formal teaching in pain management, delivering bad news or discussion about prognosis. Fifty-eight percent offered formal training in basic communication skills and 43 % training in conducting family conferences. Resources were available, with 100 % of the programs having a palliative care consultation service, 42 % having a faculty member with recognized clinical interest/expertise in palliative care, and 35 % having a faculty member board-certified in Hospice and Palliative Medicine. Our data shows HPB and surgical oncology fellowship programs are providing insufficient education and assessment in palliative care. This is not due to a shortage of faculty, palliative care resources, or teaching opportunities. Greater focus one valuation and development of strategies for teaching palliative care in surgical fellowships are needed.

Searching PubMed for a broad subject area: how effective are palliative care clinicians in finding the evidence in their field?

PubMed

Damarell, Raechel A; Tieman, Jennifer J

2016-03-01

Health professionals must be able to search competently for evidence to support practice. We sought to understand how palliative care clinicians construct searches for palliative care literature in PubMed, to quantify search efficacy in retrieving a set of relevant articles and to compare performance against a Palliative CareSearch Filter (PCSF). Included studies from palliative care systematic reviews formed a test set. Palliative care clinicians (n = 37) completed a search task using PubMed. Individual clinician searches were reconstructed in PubMed and combined with the test set to calculate retrieval sensitivity. PCSF performance in the test set was also determined. Many clinicians struggled to create useful searches. Twelve used a single search term, 17 narrowed the search inappropriately and 8 confused Boolean operators. The mean number of test set citations (n = 663) retrieved was 166 (SD = 188), or 25% although 76% of clinicians believed they would find more than 50% of the articles. Only 8 participants (22%) achieved this. Correlations between retrieval and PubMed confidence (r = 0.13) or frequency of use (r = -0.18) were weak. Many palliative care clinicians search PubMed ineffectively. Targeted skills training and PCSF promotion may improve evidence retrieval. © 2015 Health Libraries Group.

Productivity in Pediatric Palliative Care: Measuring and Monitoring an Elusive Metric.

PubMed

Kaye, Erica C; Abramson, Zachary R; Snaman, Jennifer M; Friebert, Sarah E; Baker, Justin N

2017-05-01

Workforce productivity is poorly defined in health care. Particularly in the field of pediatric palliative care (PPC), the absence of consensus metrics impedes aggregation and analysis of data to track workforce efficiency and effectiveness. Lack of uniformly measured data also compromises the development of innovative strategies to improve productivity and hinders investigation of the link between productivity and quality of care, which are interrelated but not interchangeable. To review the literature regarding the definition and measurement of productivity in PPC; to identify barriers to productivity within traditional PPC models; and to recommend novel metrics to study productivity as a component of quality care in PPC. PubMed ® and Cochrane Database of Systematic Reviews searches for scholarly literature were performed using key words (pediatric palliative care, palliative care, team, workforce, workflow, productivity, algorithm, quality care, quality improvement, quality metric, inpatient, hospital, consultation, model) for articles published between 2000 and 2016. Organizational searches of Center to Advance Palliative Care, National Hospice and Palliative Care Organization, National Association for Home Care & Hospice, American Academy of Hospice and Palliative Medicine, Hospice and Palliative Nurses Association, National Quality Forum, and National Consensus Project for Quality Palliative Care were also performed. Additional semistructured interviews were conducted with directors from seven prominent PPC programs across the U.S. to review standard operating procedures for PPC team workflow and productivity. Little consensus exists in the PPC field regarding optimal ways to define, measure, and analyze provider and program productivity. Barriers to accurate monitoring of productivity include difficulties with identification, measurement, and interpretation of metrics applicable to an interdisciplinary care paradigm. In the context of inefficiencies inherent to traditional consultation models, novel productivity metrics are proposed. Further research is needed to determine optimal metrics for monitoring productivity within PPC teams. Innovative approaches should be studied with the goal of improving efficiency of care without compromising value. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

How to Manage Hospital-Based Palliative Care Teams Without Full-Time Palliative Care Physicians in Designated Cancer Care Hospitals: A Qualitative Study.

PubMed

Sakashita, Akihiro; Kishino, Megumi; Nakazawa, Yoko; Yotani, Nobuyuki; Yamaguchi, Takashi; Kizawa, Yoshiyuki

2016-07-01

To clarify how highly active hospital palliative care teams can provide efficient and effective care regardless of the lack of full-time palliative care physicians. Semistructured focus group interviews were conducted, and content analysis was performed. A total of 7 physicians and 6 nurses participated. We extracted 209 codes from the transcripts and organized them into 3 themes and 21 categories, which were classified as follows: (1) tips for managing palliative care teams efficiently and effectively (7 categories); (2) ways of acquiring specialist palliative care expertise (9 categories); and (3) ways of treating symptoms that are difficult to alleviate (5 categories). The findings of this study can be used as a nautical chart of hospital-based palliative care team (HPCT) without full-time PC physician. Full-time nurses who have high management and coordination abilities play a central role in resource-limited HPCTs. © The Author(s) 2015.

Palliative sedation in end-of-life care and survival: a systematic review.

PubMed

Maltoni, Marco; Scarpi, Emanuela; Rosati, Marta; Derni, Stefania; Fabbri, Laura; Martini, Francesca; Amadori, Dino; Nanni, Oriana

2012-04-20

Palliative sedation is a clinical procedure aimed at relieving refractory symptoms in patients with advanced cancer. It has been suggested that sedative drugs may shorten life, but few studies exist comparing the survival of sedated and nonsedated patients. We present a systematic review of literature on the clinical practice of palliative sedation to assess the effect, if any, on survival. A systematic review of literature published between January 1980 and December 2010 was performed using MEDLINE and EMBASE databases. Search terms included palliative sedation, terminal sedation, refractory symptoms, cancer, neoplasm, palliative care, terminally ill, end-of-life care, and survival. A manual search of the bibliographies of electronically identified articles was also performed. Eleven published articles were identified describing 1,807 consecutive patients in 10 retrospective or prospective nonrandomized studies, 621 (34.4%) of whom were sedated. One case-control study was excluded from prevalence analysis. The most frequent reason for sedation was delirium in the terminal stages of illness (median, 57.1%; range, 13.8% to 91.3%). Benzodiazepines were the most common drug category prescribed. Comparing survival of sedated and nonsedated patients, the sedation approach was not shown to be associated with worse survival. Even if there is no direct evidence from randomized clinical trials, palliative sedation, when appropriately indicated and correctly used to relieve unbearable suffering, does not seem to have any detrimental effect on survival of patients with terminal cancer. In this setting, palliative sedation is a medical intervention that must be considered as part of a continuum of palliative care.

A hypnotherapy intervention for the treatment of anxiety in patients with cancer receiving palliative care.

PubMed

Plaskota, Marek; Lucas, Caroline; Evans, Rosie; Cook, Karen; Pizzoferro, Kathleen; Saini, Treena

2012-02-01

This pilot study aimed to assess the benefits of hypnotherapy in the management of anxiety and other symptoms, including depression and sleep disturbance, in palliative care patients with cancer. Eleven hospice patients received four sessions of hypnotherapy and completed the Hospital Anxiety and Depression Scale, the Edmonton Symptom Assessment System, and the Verran and Snyder-Halpern Scale at set time points. Wrist actigraphy also provided an objective assessment of sleep quality. After the second hypnotherapy session there was a statistically significant reduction in mean anxiety and symptom severity, but not in depression or sleep disturbance. After the fourth session there was a statistically significant reduction in all four patient-reported measures but not in actigraphy. These results offer evidence that hypnotherapy can reduce anxiety in palliative care patients, as well as improving sleep and the severity of psychological and physical symptoms. Further studies are needed to explore whether the observed benefits were a direct result of the hypnotherapy and how the intervention could most benefit this patient population.

Breathlessness during daily activity: The psychometric properties of the London Chest Activity of Daily Living Scale in patients with advanced disease and refractory breathlessness.

PubMed

Reilly, Charles C; Bausewein, Claudia; Garrod, Rachel; Jolley, Caroline J; Moxham, John; Higginson, Irene J

2017-10-01

The London Chest Activities of Daily Living Scale measures the impact of breathlessness on both activity and social functioning. However, the London Chest Activities of Daily Living Scale is not routinely used in patients with advanced disease. To assess the psychometric properties of the London Chest Activities of Daily Living Scale in patients with refractory breathlessness due to advanced disease. A cross-sectional secondary analysis of data from a randomised controlled parallel-group, pragmatic, single-blind fast-track trial (randomised controlled trial) investigating the effectiveness of an integrated palliative and respiratory care service for patients with advanced disease and refractory breathlessness, known as the Breathlessness Support Service (NCT01165034). All patients completed the following questionnaires: the London Chest Activities of Daily Living Scale, Chronic Respiratory Questionnaire, the Palliative care Outcome Scale, Palliative care Outcome Scale-symptoms, the Hospital Anxiety and Depression Scale and breathlessness measured on a numerical rating scale. Data quality, scaling assumptions, acceptability, internal consistency and construct validity of the London Chest Activities of Daily Living Scale were determined using standard psychometric approaches. Breathless patients with advanced malignant and non-malignant disease. A total of 88 patients were studied, primary diagnosis included; chronic obstructive pulmonary disease = 53, interstitial lung disease = 17, cancer = 18. Median (range) London Chest Activities of Daily Living Scale total score was 46.5 (14-67). No floor or ceiling effect was observed for the London Chest Activities of Daily Living Scale total score. Internal consistency was good, and Cronbach's alpha for the London Chest Activities of Daily Living Scale total score was 0.90. Construct validity was good with 13 out of 15 a priori hypotheses met. Psychometric analyses suggest that the London Chest Activities of Daily Living Scale is acceptable, reliable and valid in patients with advanced disease and refractory breathlessness.

Necessary but not yet sufficient: a survey of aged residential care staff perceptions of palliative care communication, education and delivery.

PubMed

Frey, Rosemary; Boyd, Michal; Foster, Sue; Robinson, Jackie; Gott, Merryn

2016-12-01

Previous research has indicated that staff in aged residential care (ARC) may be unprepared for their role in palliative care provision. The need for palliative care knowledge among ARC staff has been characterised as 'pervasive'. Determining the palliative care education, communication and support needs of ARC clinical care staff is, therefore, of critical importance to the delivery of quality healthcare in this setting. A survey of clinical staff (n=431) in 52 ARC facilities in 1 urban district health board was conducted, using a paper-based questionnaire. Instruments included the 3-item Experiences with End of Life scale, developed measures of communication and support (13 items), support accessibility (12 items), and palliative care education (19 items). Only 199 (46.2%) of staff participants reported undertaking palliative care education. Nurses were more likely to have engaged in palliative care education in comparison with healthcare assistants (HCAs) (χ 2 (1, N=387)=18.10, p=0.00). Participants (n=347) who wanted further education preferred an interactive, hands-on applied education (13.9%) in comparison to short topic-specific sessions/seminars (6.5%) or lecture-based courses (7.7%). The study reveals an ongoing need for staff palliative care education. Results suggest the development of an integrated model of care which draws on both hospice and ARC staff expertise. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.

Outcome in patients with small cell lung cancer re-irradiated for brain metastases after prior prophylactic cranial irradiation.

PubMed

Bernhardt, Denise; Bozorgmehr, Farastuk; Adeberg, Sebastian; Opfermann, Nils; von Eiff, Damian; Rieber, Juliane; Kappes, Jutta; Foerster, Robert; König, Laila; Thomas, Michael; Debus, Jürgen; Steins, Martin; Rieken, Stefan

2016-11-01

Patients with brain metastases from small-cell lung cancer (SCLC) who underwent prior prophylactic cranial irradiation (PCI) are often treated with a second course of whole brain radiation therapy (Re-WBRT) or stereotactic radiosurgery (SRS) for purposes of palliation in symptomatic patients, hope for increased life expectancy or even as an alternative to untolerated steroids. Up to date there is only limited data available regarding the effect of this treatment. This study examines outcomes in patients in a single institution who underwent cerebral re-irradiation after prior PCI. We examined the medical records of 76 patients with brain metastases who had initially received PCI between 2008 and 2015 and were subsequently irradiated with a second course of cerebral radiotherapy. Patients underwent re-irradiation using either Re-WBRT (88%) or SRS (17%). The outcomes, including symptom palliation, radiation toxicity, and overall survival (OS) following re-irradiation were analyzed. Survival and correlations were calculated using log-rank, univariate, and multivariate Cox proportional hazards-ratio analyses. Treatment-related toxicity was classified according to CTCAE v4.0. Median OS of all patients was 3 months (range 0-12 months). Median OS after Re-WBRT was 3 months (range 0-12 months). Median OS after SRS was 5 months (range 0-12 months). Karnofsky performance status scale (KPS ≥50%) was significantly associated with improved OS in both univariate (HR 2772; p=0,009) and multivariate analyses (HR 2613; p=0,024) for patients receiving Re-WBRT. No unexpected toxicity was observed and the observed toxicity remained consistently low. Symptom palliation was achieved in 40% of symptomatic patients. In conclusion, cerebral re-irradiation after prior PCI is beneficial for symptom palliation and is associated with minimal side effects in patients with SCLC. Our survival data suggests that it is primarily useful in patients with adequate performance status. Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.

Update in Hospice and Palliative Care.

PubMed

Gray, Nathan A; Horton, Jay R; Dionne-Odom, J Nicholas; Smith, Cardinale B; Johnson, Kimberly S

2016-05-01

The goal of this update in hospice and palliative care is to summarize and critique research published between January 1 and December 31, 2014 that has a high potential for impact on clinical practice. To identify articles we hand searched 22 leading journals, the Cochrane Database of Systematic Reviews, and Fast Article Critical Summaries for Clinicians in Palliative Care. We also performed a PubMed keyword search using the terms "hospice" and "palliative care." We ranked candidate articles based on study quality, appeal to a breadth of palliative care clinicians, and potential for impact on clinical practice. In this manuscript we have summarized the findings of eight articles with the highest ratings and make recommendations for clinical practice based on the strength of the resulting evidence.

Breathlessness during daily activity: The psychometric properties of the London Chest Activity of Daily Living Scale in patients with advanced disease and refractory breathlessness

PubMed Central

Reilly, Charles C; Bausewein, Claudia; Garrod, Rachel; Jolley, Caroline J; Moxham, John; Higginson, Irene J

2016-01-01

Background: The London Chest Activities of Daily Living Scale measures the impact of breathlessness on both activity and social functioning. However, the London Chest Activities of Daily Living Scale is not routinely used in patients with advanced disease. Aim: To assess the psychometric properties of the London Chest Activities of Daily Living Scale in patients with refractory breathlessness due to advanced disease. Design: A cross-sectional secondary analysis of data from a randomised controlled parallel-group, pragmatic, single-blind fast-track trial (randomised controlled trial) investigating the effectiveness of an integrated palliative and respiratory care service for patients with advanced disease and refractory breathlessness, known as the Breathlessness Support Service (NCT01165034). All patients completed the following questionnaires: the London Chest Activities of Daily Living Scale, Chronic Respiratory Questionnaire, the Palliative care Outcome Scale, Palliative care Outcome Scale–symptoms, the Hospital Anxiety and Depression Scale and breathlessness measured on a numerical rating scale. Data quality, scaling assumptions, acceptability, internal consistency and construct validity of the London Chest Activities of Daily Living Scale were determined using standard psychometric approaches. Setting/participants: Breathless patients with advanced malignant and non-malignant disease. Results: A total of 88 patients were studied, primary diagnosis included; chronic obstructive pulmonary disease = 53, interstitial lung disease = 17, cancer = 18. Median (range) London Chest Activities of Daily Living Scale total score was 46.5 (14–67). No floor or ceiling effect was observed for the London Chest Activities of Daily Living Scale total score. Internal consistency was good, and Cronbach’s alpha for the London Chest Activities of Daily Living Scale total score was 0.90. Construct validity was good with 13 out of 15 a priori hypotheses met. Conclusion: Psychometric analyses suggest that the London Chest Activities of Daily Living Scale is acceptable, reliable and valid in patients with advanced disease and refractory breathlessness. PMID:27932629

Implementing Routine Palliative Care Consultation Before LVAD Implantation: A Single Center Experience.

PubMed

Salomon, Say; Frankel, Hilary; Chuang, Elizabeth; Eti, Serife; Selwyn, Peter

2018-05-01

Left ventricular assist devices (LVADs) are increasingly used to improve quality of life for end-stage heart failure patients. The Joint Commission now requires preimplantation palliative care assessment; however, many palliative care teams have little experience providing this service. To describe the integration of palliative services at one Center of Excellence for Heart and Vascular Care. This is a retrospective chart review of all patients receiving LVADs at a single urban academic medical center from January 2015 to September 2016. Palliative care needs and services provided are described. Two case presentations illustrate the collaboration between the cardiothoracic and palliative care teams. Fifty one patients were included. Of those, 28 received a palliative care consultation during this roll-out period. The rate of consultation rose from 35% to 71% as workflows improved with institutional commitment. Symptom assessment, psychosocial assessment, and advance care planning (ACP) were always performed (n = 28; 100%). More than half of the patients were evaluated for dyspnea (n = 20; 71%), fatigue (n = 18; 64%), and pain (n = 16; 57%). Consults centered around ACP, and very few patients (n = 7; 25%) required palliative care follow-up. Palliative consultation did not delay LVAD placement. Although palliative care consultants provided initial evaluation and management of multiple symptoms, there was not a large ongoing need. Integration of palliative services into the care of patients receiving LVADs can be incorporated into the workflow of the cardiothoracic and palliative care teams, resulting in improved ACP for all patients receiving LVADs and better care coordination for patients at the end of life. Copyright © 2018 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

The view of pulmonologists on palliative care for patients with COPD: a survey study

PubMed Central

Duenk, RG; Verhagen, C; Dekhuijzen, PNR; Vissers, KCP; Engels, Y; Heijdra, Y

2017-01-01

Introduction Early palliative care is not a common practice for patients with COPD. Important barriers are the identification of patients for palliative care and the organization of such care in this patient group. Objective Pulmonologists have a central role in providing good quality palliative care for patients with COPD. To guide future research and develop services, their view on palliative care for these patients was explored. Methods A survey study was performed by the members of the Netherlands Association of Physicians for Lung Diseases and Tuberculosis. Results The 256 respondents (31.8%) covered 85.9% of the hospital organizations in the Netherlands. Most pulmonologists (92.2%) indicated to distinguish a palliative phase in the COPD trajectory, but there was no consensus about the different criteria used for its identification. Aspects of palliative care in COPD considered important were advance care planning conversation (82%), communication between pulmonologist and general practitioner (77%), and identification of the palliative phase (75.8%), while the latter was considered the most important aspect for improvement (67.6%). Pulmonologists indicated to prefer organizing palliative care for hospitalized patients with COPD themselves (55.5%), while 30.9% indicated to prefer cooperation with a specialized palliative care team (SPCT). In the ambulatory setting, a multidisciplinary cooperation between pulmonologist, general practitioner, and a respiratory nurse specialist was preferred (71.1%). Conclusion To encourage pulmonologists to timely initiate palliative care in COPD, we recommend to conduct further research into more specific identification criteria. Furthermore, pulmonologists should improve their skills of palliative care, and the members of the SPCT should be better informed about the management of COPD to improve care during hospitalization. Communication between pulmonologist and general practitioner should be emphasized in training to improve palliative care in the ambulatory setting. PMID:28176900

Preference for Palliative Care in Cancer Patients: Are Men and Women Alike?

PubMed

Saeed, Fahad; Hoerger, Michael; Norton, Sally A; Guancial, Elizabeth; Epstein, Ronald M; Duberstein, Paul R

2018-03-23

Men and those with low educational attainment are less likely to receive palliative care. Understanding these disparities is a high priority issue. In this study of advanced cancer patients, we hypothesized that men and those with lower levels of educational attainment would have less favorable attitudes toward palliative care. We performed a cross-sectional analysis of data collected from 383 patients at study entry in the Values and Options in Cancer Care (VOICE) clinical trial. Patients were asked about their preferences for palliative care if their oncologist informed them that further treatment would not be helpful. Palliative care was defined as "comfort care" that focuses on "quality of life, but not a cure." Response options were definitely no, possibly no, unsure, possibly yes, and definitely yes. Those preferring palliative care (definitely or possibly yes) were compared to all others. Predictors were patient gender and education level. Covariates included age, race, disease aggressiveness, and financial strain. Women were more likely [odds ratio (95% CI)] than men to prefer palliative care [3.07 (1.80-5.23)]. The effect of education on preferences for palliative care was not statistically significant [0.85 (0.48-1.48)]. Significant gender differences in patients' preferences for palliative care could partially account for gender disparities in end-of-life care. Interventions to promote palliative care among men could reduce these disparities. Copyright © 2018 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Palliative Sedation: An Analysis of International Guidelines and Position Statements.

PubMed

Gurschick, Lauren; Mayer, Deborah K; Hanson, Laura C

2015-09-01

To describe the suggested clinical practice of palliative sedation as it is presented in the literature and discuss available guidelines for its use. CINAHL, PubMed, and Web of Science were searched for publications since 1997 for recommended guidelines and position statements on palliative sedation as well as data on its provision. Keywords included palliative sedation, terminal sedation, guidelines, United States, and end of life. Inclusion criteria were palliative sedation policies, frameworks, guidelines, or discussion of its practice, general or oncology patient population, performance of the intervention in an inpatient unit, for humans, and in English. Exclusion criteria were palliative sedation in children, acute illness, procedural, or burns, and predominantly ethical discussions. Guidelines were published by American College of Physicians-American Society of Internal Medicine (2000), Hospice and Palliative Nurses Association (2003), American Academy of Hospice and Palliative Medicine (2006), American Medical Association (2008), Royal Dutch Medical Association (2009), European Association for Palliative Care (2009), National Hospice and Palliative Care Organization (2010), and National Comprehensive Cancer Network (2012). Variances throughout guidelines include definitions of the practice, indications for its use, continuation of life-prolonging therapies, medications used, and timing/prognosis. The development and implementation of institutional-based guidelines with clear stance on the discussed variances is necessary for consistency in practice. Data on provision of palliative sedation after implementation of guidelines needs to be collected and disseminated for a better understanding of the current practice in the United States. © The Author(s) 2014.

Palliative management of pressure ulcers and malignant wounds in patients with advanced illness.

PubMed

McDonald, Amy; Lesage, Pauline

2006-04-01

Pressure ulcers and malignant wounds are prevalent in populations with advanced illness. In these populations, the goals of care may shift from a primary focus on healing to a focus on wound management, palliation and comfort. Many complications associated with these wounds must be palliated. This review explores the palliative approach to managing pressure ulcers and malignant wounds in patients with advanced illness. A comprehensive search of MEDLINE, CINAHL, and Cochrane Databases for articles addressing wound management and palliation was performed. We also reviewed online wound care resources and textbooks related to the field. The key to good wound care is prevention if possible, ongoing wound assessment, correct choice of dressing and use of available adjuvant therapies. The ultimate goals of palliative wound care are to control pain, to manage infection, odor, bleeding, and exudate, and to maintain a good quality of life for the patient and caregiver.

Behavioral risk factors of constipation in palliative care patients.

PubMed

Dzierżanowski, Tomasz; Ciałkowska-Rysz, Aleksandra

2015-06-01

Constipation is frequently encountered in palliative care patients and remains a significant therapeutic problem. The etiology of constipation is multifactorial. Nutritional and behavioral factors are considered common causes of constipation; however, their impact has not yet been assessed precisely. The aim of this study was to assess the correlation between the frequency of bowel movements (FoBM) and risk factors of constipation in palliative care patients. A cohort retrospective study was performed in three palliative care centers, including outpatient, home, and inpatient care cancer patients using questionnaires on bowel dysfunction symptoms, behavioral risk factors, and opioid use. The inclusion criterion was adult patients examined on the day of admission. The exclusion criterion was Karnofsky performance status score ≤20. Spearman's rank correlation coefficient was used to measure the statistical dependence between two variables and frequency analysis was performed using the chi-squared test and Fisher's exact test. Two hundred thirty-seven valid questionnaires were collected. We found the correlation between FoBM and insufficient food and fluid intake (p < 0.0001), as well as for inadequate conditions of privacy (p = 0.0008), dependency on a caregiver (p = 0.0059), and the patient's overall performance status (p = 0.013). We did not manage to prove bed rest as the independent risk factor of constipation. The main risk factors of constipation in palliative care patients appeared to be insufficient fluid and food intake, inadequate conditions of privacy, dependency on a caregiver, as well as poor general performance status.

Palliative Care Needs Assessment in the Neuro-ICU: Effect on Family.

PubMed

Creutzfeldt, Claire J; Hanna, Marina G; Cheever, C Sherry; Lele, Abhijit V; Spiekerman, Charles; Engelberg, Ruth A; Curtis, J Randall

2017-10-01

Examine the association of a daily palliative care needs checklist on outcomes for family members of patients discharged from the neurosciences intensive care unit (neuro-ICU). We conducted a prospective, longitudinal cohort study in a single, thirty-bed neuro-ICU in a regional comprehensive stroke and level 1 trauma center. One of two neuro-ICU services that admit patients to the same ICU on alternating days used a palliative care needs checklist during morning work rounds. Between March and October, 2015, surveys were mailed to family members of patients discharged from the neuro-ICU. Nearly half of surveys (n = 91, 48.1%) were returned at a median of 4.7 months. At the time of survey completion, mean Modified rankin scale score (mRS) of neuro-ICU patients was 3.1 (SD 2). Overall ratings of quality of care were relatively high (82.2 on a 0-100 scale) with 32% of family members meeting screening criteria for depressive syndrome. The primary outcome measuring family satisfaction, consisting of eight items from the Family Satisfaction in the ICU questionnaire, did not differ significantly between families of patients from either ICU service nor did family ratings of depression (PHQ-8) and post-traumatic stress (PCL-17). Among families of patients discharged from the neuro-ICU, the daily use of a palliative care needs checklist had no measurable effect on family satisfaction scores or long-term psychological outcomes. Further research is needed to identify optimal interventions to meet the palliative care needs specific to family members of patients treated in the neuro-ICU.

Patient-reported symptoms during radiotherapy : Clinically relevant symptom burden in patients treated with palliative and curative intent.

PubMed

Körner, Philipp; Ehrmann, Katja; Hartmannsgruber, Johann; Metz, Michaela; Steigerwald, Sabrina; Flentje, Michael; van Oorschot, Birgitt

2017-07-01

The benefits of patient-reported symptom assessment combined with integrated palliative care are well documented. This study assessed the symptom burden of palliative and curative-intent radiation oncology patients. Prior to first consultation and at the end of RT, all adult cancer patients planned to receive fractionated percutaneous radiotherapy (RT) were asked to answer the Edmonton Symptom Assessment Scale (ESAS; nine symptoms from 0 = no symptoms to 10 = worst possible symptoms). Mean values were used for curative vs. palliative and pre-post comparisons, and the clinical relevance was evaluated (symptom values ≥ 4). Of 163 participating patients, 151 patients (90.9%) completed both surveys (116 curative and 35 palliative patients). Before beginning RT, 88.6% of palliative and 72.3% of curative patients showed at least one clinically relevant symptom. Curative patients most frequently named decreased general wellbeing (38.6%), followed by tiredness (35.0%), anxiety (32.4%), depression (30.0%), pain (26.3%), lack of appetite (23.5%), dyspnea (17.8%), drowsiness (8.0%) and nausea (6.1%). Palliative patients most frequently named decreased general wellbeing (62.8%), followed by pain (62.8%), tiredness (60.0%), lack of appetite (40.0%), anxiety (38.0%), depression (33.3%), dyspnea (28.5%), drowsiness (25.7%) and nausea (14.2%). At the end of RT, the proportion of curative and palliative patients with a clinically relevant symptom had increased significantly to 79.8 and 91.4%, respectively; whereas the proportion of patients reporting clinically relevant pain had decreased significantly (42.8 vs. 62.8%, respectively). Palliative patients had significantly increased tiredness. Curative patients reported significant increases in pain, tiredness, nausea, drowsiness, lack of appetite and restrictions in general wellbeing. Assessment of patient-reported symptoms was successfully realized in radiation oncology routine. Overall, both groups showed a high symptom burden. The results prove the need of systematic symptom assessment and programs for early integrated supportive and palliative care in radiation oncology.

Association Between Palliative Care and Patient and Caregiver Outcomes

PubMed Central

Kavalieratos, Dio; Corbelli, Jennifer; Zhang, Di; Dionne-Odom, J. Nicholas; Ernecoff, Natalie C.; Hanmer, Janel; Hoydich, Zachariah P.; Ikejiani, Dara Z.; Klein-Fedyshin, Michele; Zimmermann, Camilla; Morton, Sally C.; Arnold, Robert M.; Heller, Lucas; Schenker, Yael

2017-01-01

IMPORTANCE The use of palliative care programs and the number of trials assessing their effectiveness have increased. OBJECTIVE To determine the association of palliative care with quality of life (QOL), symptom burden, survival, and other outcomes for people with life-limiting illness and for their caregivers. DATA SOURCES MEDLINE, EMBASE, CINAHL, and Cochrane CENTRAL to July 2016. STUDY SELECTION Randomized clinical trials of palliative care interventions in adults with life-limiting illness. DATA EXTRACTION AND SYNTHESIS Two reviewers independently extracted data. Narrative synthesis was conducted for all trials. Quality of life, symptom burden, and survival were analyzed using random-effects meta-analysis, with estimates of QOL translated to units of the Functional Assessment of Chronic Illness Therapy–palliative care scale (FACIT-Pal) instrument (range, 0–184 [worst-best]; minimal clinically important difference [MCID], 9 points); and symptom burden translated to the Edmonton Symptom Assessment Scale (ESAS) (range, 0–90 [best-worst]; MCID, 5.7 points). MAIN OUTCOMES AND MEASURES Quality of life, symptom burden, survival, mood, advance care planning, site of death, health care satisfaction, resource utilization, and health care expenditures. RESULTS Forty-three RCTs provided data on 12 731 patients (mean age, 67 years) and 2479 caregivers. Thirty-five trials used usual care as the control, and 14 took place in the ambulatory setting. In the meta-analysis, palliative care was associated with statistically and clinically significant improvements in patient QOL at the 1- to 3-month follow-up (standardized mean difference, 0.46; 95%CI, 0.08 to 0.83; FACIT-Pal mean difference, 11.36] and symptom burden at the 1- to 3-month follow-up (standardized mean difference, −0.66; 95%CI, −1.25 to −0.07; ESAS mean difference, −10.30). When analyses were limited to trials at low risk of bias (n = 5), the association between palliative care and QOL was attenuated but remained statistically significant (standardized mean difference, 0.20; 95%CI, 0.06 to 0.34; FACIT-Pal mean difference, 4.94), whereas the association with symptom burden was not statistically significant (standardized mean difference, −0.21; 95%CI, −0.42 to 0.00; ESAS mean difference, −3.28). There was no association between palliative care and survival (hazard ratio, 0.90; 95%CI, 0.69 to 1.17). Palliative care was associated consistently with improvements in advance care planning, patient and caregiver satisfaction, and lower health care utilization. Evidence of associations with other outcomes was mixed. CONCLUSIONS AND RELEVANCE In this meta-analysis, palliative care interventions were associated with improvements in patient QOL and symptom burden. Findings for caregiver outcomes were inconsistent. However, many associations were no longer significant when limited to trials at low risk of bias, and there was no significant association between palliative care and survival. PMID:27893131

Coping With Existential and Emotional Challenges: Development and Validation of the Self-Competence in Death Work Scale.

PubMed

Chan, Wallace Chi Ho; Tin, Agnes Fong; Wong, Karen Lok Yi

2015-07-01

Palliative care professionals often are confronted by death in their work. They may experience challenges to self, such as aroused emotions and queries about life's meaningfulness. Assessing their level of "self-competence" in coping with these challenges is crucial in understanding their needs in death work. This study aims to develop and validate the Self-Competence in Death Work Scale (SC-DWS). Development of this scale involved three steps: 1) items generated from a qualitative study with palliative care professionals, (2) expert panel review, and (3) pilot test. Analysis was conducted to explore the factor structure and examine the reliability and validity of the scale. Helping professionals involved in death work were recruited to complete questionnaires comprising the SC-DWS and other scales. A total of 151 participants were recruited. Both one-factor and two-factor structures were found. Emotional and existential coping were identified as subscales in the two-factor structure. Correlations of the whole scale and subscales with measures of death attitudes, meaning in life, burnout and depression provided evidence for the construct validity. Discriminative validity was supported by showing participants with bereavement experience and longer experience in the profession and death work possessed a significantly higher level of self-competence. Reliability analyses showed that the entire scale and subscales were internally consistent. The SC-DWS was found to be valid and reliable. This scale may facilitate helping professionals' understanding of their self-competence in death work, so appropriate professional support and training may be obtained. Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Palliative care team visits. Qualitative study through participant observation.

PubMed

Alfaya Góngora, Maria Del Mar; Bueno Pernias, Maria José; Hueso Montoro, César; Guardia Mancilla, Plácido; Montoya Juárez, Rafael; García Caro, Maria Paz

2016-03-30

To describe the clinical encounters that occur when a palliative care team provides patient care and the features that influence these encounters and indicate whether they are favorable or unfavorable depending on the expectations and feelings of the various participants. A qualitative case study conducted via participant observation. A total of 12 observations of the meetings of palliative care teams with patients and families in different settings (home, hospital and consultation room) were performed. The visits were follow-up or first visits, either scheduled or on demand. Content analysis of the observation was performed. The analysis showed the normal follow-up activity of the palliative care unit that was focused on controlling symptoms, sharing information and providing advice on therapeutic regimens and care. The environment appeared to condition the patients' expressions and the type of patient relationship. Favorable clinical encounter conditions included kindness and gratitude. Unfavorable conditions were deterioration caused by approaching death, unrealistic family objectives and limited resources. Home visits from basic palliative care teams play an important role in patient and family well-being. The visits seem to focus on controlling symptoms and are conditioned by available resources.

Improving Early Palliative Care with a Scalable, Stepped Peer Navigator and Social Work Intervention: A Single-Arm Clinical Trial.

PubMed

Bekelman, David B; Johnson-Koenke, Rachel; Bowles, Daniel W; Fischer, Stacy M

2018-02-20

Patients with cancer could benefit from early primary (i.e., basic) palliative care. Scalable models of care delivery are needed. Examine the feasibility of a stepped peer navigator and social work intervention developed to improve palliative care outcomes. Single-arm prospective clinical trial. The peer navigator educated patients to advocate for pain and symptom management with their healthcare providers, motivated patients to pursue advance care planning, and discussed the role of hospice. The social worker saw patients with persistent psychosocial distress. Patients with advanced cancer at a VA Medical Center not currently in palliative care or hospice whose oncologist would not be surprised if the patient died in the subsequent year. Participation and retention rates, patient-reported symptoms and quality of life, advance directive documentation, patient satisfaction survey, and semistructured interviews. The participation rate was 38% (17/45), and 35% (7/17) completed final survey measures. Patients had stage IV (81%) and primarily genitourinary (47%) and lung (24%) malignancies. Median Eastern Cooperative Oncology Group performance status was 0. Patient-reported surveys indicated low distress (mean scores: Functional Assessment of Cancer Therapy-General, 75.3 [standard deviation {SD} 17.6]; Edmonton Symptom Assessment Scale symptom scores ranged from 1.6 to 3.8; Patient Health Questionnaire-9, 5.7 [SD 5.2]; and Generalized Anxiety Disorder-7, 2.8 [SD 4.1]). Of those who had not completed advance directives at baseline (n = 11, 65%), five completed them by the end of study (5/11, 45%). Patients who completed satisfaction surveys (n = 7) and interviews (n = 4) provided mixed reviews of the intervention. At a single site, a stepped peer navigator and social work palliative care study had several challenges to feasibility, including low patient-reported distress and loss to follow-up.

Dysphagia in Infants with Single Ventricle Anatomy Following Stage 1 Palliation: Physiologic Correlates and Response to Treatment

PubMed Central

McGrattan, Katlyn Elizabeth; McGhee, Heather; DeToma, Allan; Hill, Elizabeth G.; Zyblewski, Sinai C.; Lefton-Greif, Maureen; Halstead, Lucinda; Bradley, Scott M.; Martin-Harris, Bonnie

2017-01-01

Background Deficits in swallowing physiology are a leading morbidity for infants with functional single ventricles and systemic outflow tract obstruction following stage 1 palliation. Despite the high prevalence of this condition, the underlying deficits that cause this post-operative impairment remain poorly understood. Objective Identify the physiologic correlates of dysphagia in infants with functional single ventricles and systemic outflow tract obstruction following stage 1 palliative surgery. Methods Postoperative fiberoptic laryngoscopies and videofluoroscopic swallow studies (VFSS) were conducted sequentially on infants with functional single ventricles following stage 1 palliative surgery. Infants were dichotomized as having normal or impaired laryngeal function based on laryngoscopy findings. VFSS were evaluated frame-by-frame using a scale that quantifies performance within 11 components of swallowing physiology. Physiologic attributes within each component were categorized as high functioning or low functioning based on their ability to support milk ingestion without bolus airway entry. Results Thirty-six infants (25 male) were included in the investigation. Twenty-four underwent the Norwood procedure and twelve underwent the Hybrid procedure. Low function physiologic patterns were observed within multiple swallowing components during the ingestion of thin barium as characterized by ≥ 4 sucks per swallow (36%), initiation of pharyngeal swallow below the level of the valleculae (83%), and incomplete late laryngeal vestibular closure (56%) at the height of the swallow. Swallowing deficits contributed to aspiration in 50% of infants. Although nectar thick liquids reduced the rate of aspiration (p=0.006), aspiration rates remained high (27%). No differences in rates of penetration or aspiration were observed between infants with normal and impaired laryngeal function. Conclusions Deficits in swallowing physiology contribute to penetration and aspiration following stage 1 palliation among infants with normal and impaired laryngeal function. Although thickened liquids may improve airway protection for select infants, they may inhibit their ability to extract the bolus and meet nutritional needs. PMID:28244680

Dysphagia in infants with single ventricle anatomy following stage 1 palliation: Physiologic correlates and response to treatment.

PubMed

McGrattan, Katlyn Elizabeth; McGhee, Heather; DeToma, Allan; Hill, Elizabeth G; Zyblewski, Sinai C; Lefton-Greif, Maureen; Halstead, Lucinda; Bradley, Scott M; Martin-Harris, Bonnie

2017-05-01

Deficits in swallowing physiology are a leading morbidity for infants with functional single ventricles and systemic outflow tract obstruction following stage 1 palliation. Despite the high prevalence of this condition, the underlying deficits that cause this post-operative impairment remain poorly understood. Identify the physiologic correlates of dysphagia in infants with functional single ventricles and systemic outflow tract obstruction following stage 1 palliative surgery. Postoperative fiberoptic laryngoscopies and videofluoroscopic swallow studies (VFSS) were conducted sequentially on infants with functional single ventricles following stage 1 palliative surgery. Infants were dichotomized as having normal or impaired laryngeal function based on laryngoscopy findings. VFSS were evaluated frame-by-frame using a scale that quantifies performance within 11 components of swallowing physiology. Physiologic attributes within each component were categorized as high functioning or low functioning based on their ability to support milk ingestion without bolus airway entry. Thirty-six infants (25 male) were included in the investigation. Twenty-four underwent the Norwood procedure and twelve underwent the Hybrid procedure. Low function physiologic patterns were observed within multiple swallowing components during the ingestion of thin barium as characterized by ≥4 sucks per swallow (36%), initiation of pharyngeal swallow below the level of the valleculae (83%), and incomplete late laryngeal vestibular closure (56%) at the height of the swallow. Swallowing deficits contributed to aspiration in 50% of infants. Although nectar thick liquids reduced the rate of aspiration (P = .006), aspiration rates remained high (27%). No differences in rates of penetration or aspiration were observed between infants with normal and impaired laryngeal function. Deficits in swallowing physiology contribute to penetration and aspiration following stage 1 palliation among infants with normal and impaired laryngeal function. Although thickened liquids may improve airway protection for select infants, they may inhibit their ability to extract the bolus and meet nutritional needs. © 2017 Wiley Periodicals, Inc.

Distress, Delay of Gratification and Preference for Palliative Care in Men with Prostate Cancer

PubMed Central

Gerhart, James; Asvat, Yasmin; Lattie, Emily; O’Mahony, Sean; Duberstein, Paul; Hoerger, Michael

2015-01-01

Patient-centered cancer care standards include routine psychosocial distress screening and referral for supportive care services. Although many cancer patients report psychosocial distress that could be alleviated by supportive services, including palliative care, patients often decline such services for reasons that are poorly understood. Research on decision-making suggests that, during periods of acute distress, individuals have more difficulty prioritizing long-term over immediate gains. Thus, distressed cancer patients may prioritize immediate gains (e.g., avoidance of palliative care discussions in the moment) over longer term gains (e.g., improved quality of life in the future). This study investigated the associations between psychosocial distress, difficulties with delay of gratification (tendency to prioritize short term over longer term gains), and preference for palliative care in a sample of 212 men with a history of prostate cancer (94% White, 27% advanced stage, age M = 62, SD = 8). It was hypothesized that psychosocial distress would be associated with lower preferences for palliative care, and this association would be explained, in part, by difficulty delaying gratification. Self-report measures included the Depression Anxiety Stress Scales, Delay of Gratification Inventory, and ratings on an item assessing preferences for palliative care. Consistent with the hypothesis, mediation models confirmed that the association of psychosocial distress with lower preference for palliative care was mediated by delay of gratification. Findings suggest that distressed prostate cancer patients may benefit from additional support managing the emotional aspects of medical decisions and weighing immediate vs. delayed outcomes. PMID:25899740

Palliative care units in lung cancer in the real-world setting: a single institution's experience and its implications.

PubMed

Masel, Eva Katharina; Schur, Sophie; Nemecek, Romina; Mayrhofer, Michael; Huber, Patrick; Adamidis, Feroniki; Maehr, Bruno; Unseld, Matthias; Watzke, Herbert Hans; Pirker, Robert

2017-01-01

Palliative care plays a crucial role in the overall management of patients with advanced lung cancer and was shown to lead to clinically meaningful improvement in quality of life, less aggressive endof-life care, and potentially prolonged survival. Here we summarize our single institution experience on palliative care in patients with lung cancer. The data of patients with lung cancer treated at the palliative care unit of the Medical University of Vienna between June 2010 and March 2013 were retrospectively reviewed. Patient characteristics, reasons for admissions, treatment as well as interventions during hospitalization, and clinical outcomes were determined. The study enrolled 91 lung cancer patients, who represented 19.8% of the 460 patients admitted to the palliative care unit. They had the following clinical characteristics: 39% females, 61% males; median age 62 years; median Karnofsky performance status 50%, 92% metastatic disease, 74% non-small cell lung cancer (NSCLC), 19% small-cell lung cancer (SCLC), 7% neuroendocrine carcinomas of the lung. Primary reasons for admission were deterioration of performance status in 40%, uncontrolled cancer-related pain in 38%, dyspnea in 13%, and psychosocial factors in 8% of the patients. Median duration of hospitalization was 16 days (range, 1-101 days). Improvement or stabilisation of tumor-related symptoms was achieved in 25% of the patients. Seventy-five percent of all patients died during their first admission. Their median survival from primary diagnosis until death was 16 months (95% confidence interval, 13.7-18.3 months). Patients with lung cancer admitted to the palliative care unit had late-stage disease. In order to provide early palliative care, the management of lung cancer patients should guarantee access to ambulatory care, inpatient care and home care as well as cooperation and communication between oncologists and palliative care physicians.

A critical enquiry into the psychometric properties of the professional quality of life scale (ProQol-5) instrument.

PubMed

Hemsworth, David; Baregheh, Anahita; Aoun, Samar; Kazanjian, Arminee

2018-02-01

This study had conducted a comprehensive analysis of the psychometric properties of Proqol 5, professional quality of work instrument among nurses and palliative care-workers on the basis of three independent datasets. The goal is to see the general applicability of this instrument across multiple populations. Although the Proqol scale has been widely adopted, there are few attempts that have thoroughly analyzed this instrument across multiple datasets using multiple populations. A questionnaire was developed and distributed to palliative care-workers in Canada and Nurses at two hospitals in Australia and Canada, this resulted in 273 datasets from the Australian and 303 datasets from the Canadian nurses and 503 datasets from the Canadian palliative care-workers. A comprehensive psychometric property analysis was conducted including inter-item correlations, tests of reliability, and both convergent and discriminant validity as well as construct validity analyses. In addition, to test for the reverse coding artifacts in the BO scale, exploratory factor analysis was adopted. The psychometric property analysis of Proqol 5 was satisfactory for the compassion satisfaction construct. However, there are concerns with respect to the burnout and secondary trauma stress scales and recommendations are made regarding the coding and specific items which should improve the reliability and validity of these scales. This research establishes the strengths and weaknesses of the Proqol instrument and demonstrates how it can be improved. Through specific recommendations, the academic community is invited to revise the burnout and secondary traumatic stress scales in an effort to improve Proqol 5 measures. Copyright © 2017. Published by Elsevier Inc.

[The cultural history of palliative care in primitive societies: an integrative review].

PubMed

Siles González, José; Solano Ruiz, Maria Del Carmen

2012-08-01

The objective of this study is to describe the evolution of palliative care in order to reflect on the possibility of its origin in primitive cultures and their relationship with the beginnings of the cult of the dead. It describes the change in the symbolic structures and social interactions involved in palliative care during prehistory: functional unit, functional framework and functional element. The theoretical framework is based on cultural history, the dialectical structural model and symbolic interactionism. Categorization techniques, cultural history and dialectic structuralism analyses were performed. Palliative care existed in primitive societies, mostly associated with the rites of passage with a high symbolic content. The social structures - functional unit, functional framework and functional element - are the pillars that supported palliative care in prehistory societies.

Involvement of palliative care in euthanasia practice in a context of legalized euthanasia: A population-based mortality follow-back study

PubMed Central

Dierickx, Sigrid; Deliens, Luc; Cohen, Joachim; Chambaere, Kenneth

2017-01-01

Background: In the international debate about assisted dying, it is commonly stated that euthanasia is incompatible with palliative care. In Belgium, where euthanasia was legalized in 2002, the Federation for Palliative Care Flanders has endorsed the viewpoint that euthanasia can be embedded in palliative care. Aim: To examine the involvement of palliative care services in euthanasia practice in a context of legalized euthanasia. Design: Population-based mortality follow-back survey. Setting/participants: Physicians attending a random sample of 6871 deaths in Flanders, Belgium, in 2013. Results: People requesting euthanasia were more likely to have received palliative care (70.9%) than other people dying non-suddenly (45.2%) (odds ratio = 2.1 (95% confidence interval, 1.5–2.9)). The most frequently indicated reasons for non-referral to a palliative care service in those requesting euthanasia were that existing care already sufficiently addressed the patient’s palliative and supportive care needs (56.5%) and that the patient did not want to be referred (26.1%). The likelihood of a request being granted did not differ between cases with or without palliative care involvement. Palliative care professionals were involved in the decision-making process and/or performance of euthanasia in 59.8% of all euthanasia deaths; this involvement was higher in hospitals (76.0%) than at home (47.0%) or in nursing homes (49.5%). Conclusion: In Flanders, in a context of legalized euthanasia, euthanasia and palliative care do not seem to be contradictory practices. A substantial proportion of people who make a euthanasia request are seen by palliative care services, and for a majority of these, the request is granted. PMID:28849727

Pediatric Cardiology Provider Attitudes About Palliative Care: A Multicenter Survey Study.

PubMed

Balkin, Emily Morell; Kirkpatrick, James N; Kaufman, Beth; Swetz, Keith M; Sleeper, Lynn A; Wolfe, Joanne; Blume, Elizabeth D

2017-10-01

While availability of palliative care consultation for children with advanced heart disease increases, little is known about cardiologist attitudes towards palliative care. We sought to describe perspectives of cardiologists regarding palliative care and to characterize their perceived competence in palliative care concepts. A cross-sectional survey of pediatric cardiologists and cardiac surgeons from 19 pediatric medical centers was performed. Overall response rate was 31% (183/589). Respondents had a median of 18 years of experience since medical school (range 2-49) and most practiced at academic centers (91%). Sixty-percent of respondents felt that palliative care consultations occur "too late" and the majority (85%) agreed that palliative care consultations are helpful. Barriers to requesting palliative care consultation were most frequently described as "referring to palliative care services too early will undermine parents' hope" (45%) and "concern that parents will think I am giving up on their child" (56%). Only 33% of cardiologists reported feeling "very" or "moderately" competent in prognosticating life expectancy while over 60% felt competent caring for children with heart disease around end of life, and nearly 80% felt competent discussing goals of care and code status. Greater perceived competence was associated with subspecialty (heart failure/intensivist vs. other) (OR 3.6, 95% CI 1.6-8.1, p = 0.003) and didactic training (OR 6.27, 95% CI 1.8-21.8, p = 0.004). These results underscore the need for further training in palliative care skills for pediatric cardiologists. Enhancing palliative care skills among cardiologists and facilitating partnership with subspecialty palliative care teams may improve overall care of children with advanced heart disease.

Integration of Palliative Care in the Context of Rapid Response

PubMed Central

Nelson, Judith E.; Mathews, Kusum S.; Weissman, David E.; Brasel, Karen J.; Campbell, Margaret; Curtis, J. Randall; Frontera, Jennifer A.; Gabriel, Michelle; Hays, Ross M.; Mosenthal, Anne C.; Mulkerin, Colleen; Puntillo, Kathleen A.; Ray, Daniel E.; Weiss, Stefanie P.; Bassett, Rick; Boss, Renee D.; Lustbader, Dana R.

2015-01-01

Rapid response teams (RRTs) can effectively foster discussions about appropriate goals of care and address other emergent palliative care needs of patients and families facing life-threatening illness on hospital wards. In this article, The Improving Palliative Care in the ICU (IPAL-ICU) Project brings together interdisciplinary expertise and existing data to address the following: special challenges for providing palliative care in the rapid response setting, knowledge and skills needed by RRTs for delivery of high-quality palliative care, and strategies for improving the integration of palliative care with rapid response critical care. We discuss key components of communication with patients, families, and primary clinicians to develop a goal-directed treatment approach during a rapid response event. We also highlight the need for RRT expertise to initiate symptom relief. Strategies including specific clinician training and system initiatives are then recommended for RRT care improvement. We conclude by suggesting that as evaluation of their impact on other outcomes continues, performance by RRTs in meeting palliative care needs of patients and families should also be measured and improved. PMID:25644909

Patient perceptions of specialised hospital-based palliative home care: a qualitative study using a phenomenographical approach.

PubMed

Svensson, Gunilla; Wåhlin, Ingrid

2018-01-02

Specialised palliative care is given around the clock to palliative patients who have severe symptoms or special needs. The aim of this study was to describe patients' perceptions of what it is like to be cared for by a specialised palliative care team within hospital-based palliative home care (HPHC). A qualitative method with semi-structured interviews was used. Fourteen patients enrolled in HPHC at a unit for specialised palliative care linked to the hospital in the southeast of Sweden participated. The analysis was performed with a phenomenographical approach. Four description categories were identified: 'it is safe to receive care at home,' 'support and commitment', 'having access to a multiprofessional team', and 'how HPHC changes everyday life'. To be cared for by HPHC was perceived as safe, and the patients thought that having access to competent staff who supported them around the clock had improved their care and daily life. The need for specialised palliative care will likely grow with an ageing population and this form of care was perceived as functioning well.

Bibliometric Analysis of Palliative Care-Related Publication Trends During 2001 to 2016.

PubMed

Liu, Chia-Jen; Yeh, Te-Chun; Hsu, Su-Hsuan; Chu, Chao-Mei; Liu, Chih-Kuang; Chen, Mingchih; Huang, Sheng-Jean

2018-01-01

The scientific contributions (publications) and international influence (citations) from authors providing the palliative care (PC)-related literature has a limited number of bibliometric reports. We aimed to analyze PC-related literature using the Institute for Scientific Information Web of Science (WoS) database. WoS database was used to retrieve publications with the following key words with title: "palliative care" OR "End of Life care" OR "terminal care.". The statistical analysis of the documents published during 2001 to 2016 was performed. The quantity and quality of research were assessed by the number of total publications and citation analysis. In addition, we also analyzed whether there were possible correlations between publication and socioeconomic factors. The total research output was 6273 articles for PC. There was a 3-fold increase in the number of publications during the period and strong correlation between the year and number of PC-related publications ( R 2 = .96). The United States took a leading position in PC research (2448, 39.0%). The highest average citations was reported for the Norway (21.8). Australia had gained the highest productive ability in PC research (24.9 of articles per million populations). The annual impact factor rose progressively with time and increased 1.13 to 2.24 from 2003 to 2016. The number of publications correlated with gross domestic product ( r = .74; P < .001). The United States and United Kingdom contributed most of the publications, but some East Asian countries also had a great performance. According to the socioeconomic factors, the publication capacity of top 20 countries is correlated with their economic scale.

The PAMINO-project: evaluating a primary care-based educational program to improve the quality of life of palliative patients

PubMed Central

Rosemann, Thomas; Hermann, Katja; Miksch, Antje; Engeser, Peter; Szecsenyi, Joachim

2007-01-01

Background The care of palliative patients challenges the health care system in both quantity and quality. Especially the role of primary care givers needs to be strengthened to provide them with the knowledge and the confidence of applying an appropriate end-of-life care to palliative patients. To improve health care services for palliative patients in primary care, interested physicians in and around Heidelberg, Germany, are enabled to participate in the community-based program 'Palliative Medical Initiative North Baden (PAMINO)' to improve their knowledge in dealing with palliative patients. The impact of this program on patients' health and quality of life remains to be evaluated. Methods/Design The evaluation of PAMINO is a non-randomized, controlled study. Out of the group of primary care physicians who took part in the PAMINO program, a sample of 45 physicians and their palliative patients will be compared to a sample of palliative patients of 45 physicians who did not take part in the program. Every four weeks for 6 months or until death, patients, physicians, and the patients' family caregivers in both groups answer questions to therapy strategies, quality of life (QLQ-C15-PAL, POS), pain (VAS), and burden for family caregivers (BSFC). The inclusion of physicians and patients in the study starts in March 2007. Discussion Although participating physicians value the increase in knowledge they receive from PAMINO, the effects on patients remain unclear. If the evaluation reveals a clear benefit for patients' quality of life, a larger-scale implementation of the program is considered. Trial registration: The study was registered at ‘current controlled trials (CCT)’, registration number: ISRCTN78021852. PMID:17535418

Treatment outcomes in palliative care: the TOPCare study. A mixed methods phase III randomised controlled trial to assess the effectiveness of a nurse-led palliative care intervention for HIV positive patients on antiretroviral therapy

PubMed Central

2012-01-01

Background Patients with HIV/AIDS on Antiretroviral Therapy (ART) suffer from physical, psychological and spiritual problems. Despite international policy explicitly stating that a multidimensional approach such as palliative care should be delivered throughout the disease trajectory and alongside treatment, the effectiveness of this approach has not been tested in ART-experienced populations. Methods/design This mixed methods study uses a Randomised Controlled Trial (RCT) to test the null hypothesis that receipt of palliative care in addition to standard HIV care does not affect pain compared to standard care alone. An additional qualitative component will explore the mechanism of action and participant experience. The sample size is designed to detect a statistically significant decrease in reported pain, determined by a two tailed test and a p value of ≤0.05. Recruited patients will be adults on ART for more than one month, who report significant pain or symptoms which have lasted for more than two weeks (as measured by the African Palliative Care Association (APCA) African Palliative Outcome Scale (POS)). The intervention under trial is palliative care delivered by an existing HIV facility nurse trained to a set standard. Following an initial pilot the study will be delivered in two African countries, using two parallel independent Phase III clinical RCTs. Qualitative data will be collected from semi structured interviews and documentation from clinical encounters, to explore the experience of receiving palliative care in this context. Discussion The data provided by this study will provide evidence to inform the improvement of outcomes for people living with HIV and on ART in Africa. ClinicalTrials.gov Identifier: NCT01608802 PMID:23130740

A palliative care hotline for multiple sclerosis: A pilot feasibility study.

PubMed

Knies, Andrea K; Golla, Heidrun; Strupp, Julia; Galushko, Maren; Schipper, Sabine; Voltz, Raymond

2015-08-01

Research findings suggest that patients severely affected by multiple sclerosis benefit from palliative care. Our objectives were to (1) implement a pilot palliative care counseling hotline for severely affected multiple sclerosis patients and their caregivers in order to connect them to palliative care, and (2) evaluate its preliminary feasibility through a pilot study. The hotline was designed in cooperation with the local state association of the German Multiple Sclerosis Society and based on a review of the literature. The initial study setting for the hotline was the broader region of the cities Cologne and Bonn in Germany. The hotline was introduced through a magazine published by the German Multiple Sclerosis Society and leaflets sent to local healthcare providers. Calls were conducted using a semistructured interview guide and documented by a standardized case report form. Measures to assess feasibility were both quantitative (e.g., number of calls) and qualitative (e.g., criteria for eligibility for palliative care). During its pilot year, the hotline received 18 calls. Some 15 callers were included in the analysis, and 10 of these 15 were deemed eligible for palliative care due to such criteria as medical characteristics, care or nursing conditions, caregiver strain, and concerns regarding death and dying. Access to palliative care services could be provided for all 10 callers. Based on our pilot feasibility study, the hotline seems to be a valuable service for patients severely affected by multiple sclerosis (MS) and their caregivers in order to gain information about and access to palliative care. It will be extended on a nationwide scale through a grant of the German Multiple Sclerosis Society. Awareness of the hotline needs to be enhanced in order to attract and support a significant number of new callers.

Potential palliative care quality indicators in heart disease patients: A review of the literature.

PubMed

Mizuno, Atsushi; Miyashita, Mitsunori; Hayashi, Akitoshi; Kawai, Fujimi; Niwa, Koichiro; Utsunomiya, Akemi; Kohsaka, Shun; Kohno, Takashi; Yamamoto, Takeshi; Takayama, Morimasa; Anzai, Toshihisa

2017-10-01

In spite of the increasing interest in palliative care for heart disease, data on the detailed methods of palliative care and its efficacy specifically in heart disease are still lacking. A structured PubMed literature review revealed no quality indicators of palliative care in heart disease. Therefore, we performed a narrative overview of the potential quality indicators in heart disease by reviewing previous literature concerning quality indicators in cancer patients. We summarize seven potential categories of quality indicators in heart disease: (1) presence and availability of a palliative care unit, palliative care team, and outpatient palliative care; (2) human resources such as number of skilled staff; (3) infrastructure; (4) presence and frequency of documentation or family survey; (5) patient-reported outcome measure (PROM) data and disease-specific patient quality of life such as The Kansas City Cardiomyopathy Questionnaire (KCCQ); (6) questionnaires and interviews about the quality of palliative care after death, including bereaved family surveys; and (7) admission-related outcomes such as place of death and intensive care unit length of stay. Although detailed measurements of palliative care quality have not been validated in heart disease, many indicators developed in cancer patients might also be applicable to heart disease. This new categorization might be useful to determine quality indicators in heart disease patients. Copyright © 2017 Japanese College of Cardiology. Published by Elsevier Ltd. All rights reserved.

Development and validation of the quality care questionnaire -palliative care (QCQ-PC): patient-reported assessment of quality of palliative care.

PubMed

Yun, Young Ho; Kang, Eun Kyo; Lee, Jihye; Choo, Jiyeon; Ryu, Hyewon; Yun, Hye-Min; Kang, Jung Hun; Kim, Tae You; Sim, Jin-Ah; Kim, Yaeji

2018-03-05

In this study, we aimed to develop and validate an instrument that could be used by patients with cancer to evaluate their quality of palliative care. Development of the questionnaire followed the four-phase process: item generation and reduction, construction, pilot testing, and field testing. Based on the literature, we constructed a list of items for the quality of palliative care from 104 quality care issues divided into 14 subscales. We constructed scales of 43 items that only the cancer patients were asked to answer. Using relevance and feasibility criteria and pilot testing, we developed a 44-item questionnaire. To assess the sensitivity and validity of the questionnaire, we recruited 220 patients over 18 years of age from three Korean hospitals. Factor analysis of the data and fit statistics process resulted in the 4-factor, 32-item Quality Care Questionnaire-Palliative Care (QCQ-PC), which covers appropriate communication with health care professionals (ten items), discussing value of life and goals of care (nine items), support and counseling for needs of holistic care (seven items), and accessibility and sustainability of care (six items). All subscales and total scores showed a high internal consistency (Cronbach alpha range, 0.89 to 0.97). Multi-trait scaling analysis showed good convergent (0.568-0.995) and discriminant (0.472-0.869) validity. The correlation between the total and subscale scores of QCQ-PC and those of EORTC QLQ-C15-PAL, MQOL, SAT-SF, and DCS was obtained. This study demonstrates that the QCQ-PC can be adopted to assess the quality of care in patients with cancer.

Dying with dementia: what we know after more than a decade of research.

PubMed

van der Steen, Jenny T

2010-01-01

Death with dementia is increasingly common. Although prognostication is difficult, it is an incurable life-limiting illness for which palliative care for the patient is often appropriate. Dementia patients are otherwise at risk of overtreatment with burdensome and possibly non-beneficial interventions and undertreatment of symptoms. Although recent studies indicate encouraging trends of improved palliative care, little evidence supports effectiveness of specific treatments. As of January 2010, at least 45 studies, almost all performed after 2000, have reported on treatment, comfort, symptom burden, and families' satisfaction with care. Over half (25; 56%) of these studies were in US settings, and most were small or retrospective. Few randomized trials and prospective observational studies have been performed so far, but several promising studies have been completed recently or are underway in various countries. Guidelines for care and treatment, still mostly consensus-based, support the benefits of advance care planning, continuity of care, and family and practitioner education. Assessment tools for pain, prognosis, and family evaluations of care have been developed and some have been shown to be effective in clinical practice. With increasing numbers of well-designed, large-scale studies, research in the next decade may result in better evidence-based guidelines and practice.

Translation and Testing of the Italian Version of FAMCARE-2: Measuring Family Caregivers' Satisfaction With Palliative Care.

PubMed

D'Angelo, Daniela; Punziano, Antonella Cinzia; Mastroianni, Chiara; Marzi, Annamaria; Latina, Roberto; Ghezzi, Valerio; Piredda, Michela; De Marinis, Maria Grazia

2017-05-01

Family satisfaction is an important outcome of palliative care and is a critical measure for health care professionals to address when assessing quality of care. The FAMCARE-2 is a widely used measure of family satisfaction with the health care received by both patient and family in palliative care. In this study, a team of Italian researchers culturally adapted the FAMCARE-2 to the Italian language and psychometrically tested the instrument by measuring satisfaction of 185 family caregivers of patients admitted into two palliative care services. FAMCARE-2 showed excellent levels of internal consistency (Cronbach's α coefficient = .96) and test-retest reliability ( r = .98, p < .01). The confirmatory factor analysis showed a single-factor structure with good fit. Satisfaction levels were significantly correlated with family caregivers being females with less education, patient length of care, and place of assistance and death. This scale can help health care professionals identify which aspects of care need improvement and enable family caregivers to manage their challenging role.

Patient Outcomes After Palliative Care Consultation Among Patients Undergoing Therapeutic Hypothermia.

PubMed

Pinto, Priya; Brown, Tartania; Khilkin, Michael; Chuang, Elizabeth

2018-04-01

To compare the clinical outcomes of patients who did and did not receive palliative care consultation among those who experienced out-of-hospital cardiac arrest and underwent therapeutic hypothermia. We identified patients at a single academic medical center who had undergone therapeutic hypothermia after out-of-hospital cardiac arrest between 2009 and 2013. We performed a retrospective chart review for demographic data, hospital and critical care length of stay, and clinical outcomes of care. We reviewed the charts of 62 patients, of which 35 (56%) received a palliative care consultation and 27 (44%) did not. Palliative care consultation occurred an average of 8.3 days after admission. Patients receiving palliative care consultation were more likely to have a do-not-resuscitate (DNR) order placed (odds ratio: 2.3, P < .001). The mean length of stay in the hospital was similar for patients seen by palliative care or not (16.7 vs 17.1 days, P = .90). Intensive care length of stay was also similar (11.3 vs 12.6 days, P = .55). Palliative care consultation was underutilized and utilized late in this cohort. Palliative consultation was associated with DNR orders but did not affect measures of utilization such as hospital and intensive care length of stay.

Clinical trials in palliative care: a systematic review of their methodological characteristics and of the quality of their reporting.

PubMed

Bouça-Machado, Raquel; Rosário, Madalena; Alarcão, Joana; Correia-Guedes, Leonor; Abreu, Daisy; Ferreira, Joaquim J

2017-01-25

Over the past decades there has been a significant increase in the number of published clinical trials in palliative care. However, empirical evidence suggests that there are methodological problems in the design and conduct of studies, which raises questions about the validity and generalisability of the results and of the strength of the available evidence. We sought to evaluate the methodological characteristics and assess the quality of reporting of clinical trials in palliative care. We performed a systematic review of published clinical trials assessing therapeutic interventions in palliative care. Trials were identified using MEDLINE (from its inception to February 2015). We assessed methodological characteristics and describe the quality of reporting using the Cochrane Risk of Bias tool. We retrieved 107 studies. The most common medical field studied was oncology, and 43.9% of trials evaluated pharmacological interventions. Symptom control and physical dimensions (e.g. intervention on pain, breathlessness, nausea) were the palliative care-specific issues most studied. We found under-reporting of key information in particular on random sequence generation, allocation concealment, and blinding. While the number of clinical trials in palliative care has increased over time, methodological quality remains suboptimal. This compromises the quality of studies. Therefore, a greater effort is needed to enable the appropriate performance of future studies and increase the robustness of evidence-based medicine in this important field.

Evaluating outcomes of palliative photodynamic therapy: instrument development and preliminary results

NASA Astrophysics Data System (ADS)

Goodell, Teresa T.; Bargo, Paulo R.; Jacques, Steven L.

2002-06-01

Background: Subjective measures are considered the gold standard in palliative care evaluation, but no studies have evaluated palliative photodynamic therapy (PDT) subjectively. If PDT is to be accepted as a palliative therapy for later-stage obstructing esophageal and lung cancer, evidence of its effectiveness and acceptability to patients must be made known. Study Design/Materials and Methods: This ongoing study's major aim is to evaluate subjective outcomes of PDT in patients with obstructing esophageal and lung cancer. Existing measures of health status, dysphagia and performance status were supplemented with an instrument developed to evaluate PDT symptom relief and side effect burden, the PDT Side Effects Survey (PSES). Results: PDT patients treated with porfimer sodium (Photofrin) and 630-nm light experienced reduced dysphagia grade and stable performance status for at least one month after PDT (N= 10-17), but these effects did not necessarily persist at three months. Fatigue, appetite and quality of life may be the most burdensome issues for these patients. Conclusions: Preliminary data suggest that the PSES is an acceptable and valid tool for measuring subjective outcomes of palliative PDT. This study is the first attempt to systematically evaluate subjective outcomes of palliative PDT. Multi-center outcomes research is needed to draw generalizable conclusions that will establish PDT's effectiveness in actual clinical practice and enhance the wider adoption of PDT as a cancer symptom relief modality.

Valuing Attributes of Home Palliative Care With Service Users: A Pilot Discrete Choice Experiment.

PubMed

Gomes, Barbara; de Brito, Maja; Sarmento, Vera P; Yi, Deokhee; Soares, Duarte; Fernandes, Jacinta; Fonseca, Bruno; Gonçalves, Edna; Ferreira, Pedro L; Higginson, Irene J

2017-12-01

Discrete choice experiment (DCE) is a quantitative method that helps determine which service attributes are most valued by people and consequently improve their well-being. The objective of this study was to test a new DCE on home palliative care (HPC). Cross-sectional survey using the DCE method with adult patients and their family caregivers, users of three HPC services in Portugal. Service attributes were based on a Cochrane review, a meta-ethnography, and the few existing DCEs on HPC: 1) team's availability, 2) support for family caregivers, 3) homecare support, 4) information and planning, and 5) waiting time. The experimental design consisted in three blocks of eight choice sets where participants chose between two service alternatives that combined different levels of each attribute. We piloted the DCE using cognitive interviewing. Interviews were analyzed for difficulties using Tourangeau's model of information processing. The DCE was conducted with 21 participants of 37 eligible (10 patients with median Palliative Performance Scale score = 45, 11 caregivers). Most participants found the DCE easy (median 2 from 1 to 5), although two patients did not finish the exercise. Key difficulties related to comprehension (e.g., waiting time sometimes understood as response time for visit instead of time from referral to care start) and judgment (e.g., indecision due to similar service alternatives). The DCE method is feasible and acceptable but not all patients are able to participate. In the main study phase, we will give more attention to the explanation of the waiting time attribute. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Ethics and gender issues in palliative care in nursing homes: an Austrian participatory research project.

PubMed

Reitinger, Elisabeth; Heimerl, Katharina

2014-06-01

The development of palliative care in nursing homes in German-speaking countries has gained in importance within the past 15-20 years. Ethical and gender issues are core aspects of a palliative care culture and should therefore be better understood. The aim of this study was to highlight insights regarding ethical and gender issues, based on the experiences of professionals in nursing homes. A 2-year participatory action research study was performed in collaboration with three nursing homes in Austria. The article focusses on 10 group discussions with interdisciplinary professional teams that were conducted to generate ethical narratives. Thematic and narrative analysis was undertaken both individually and within the interdisciplinary research team. Findings and interpretations were validated with practitioners and researchers. A total of 36 narratives were collected and summarised within eight themes concerning the theoretical journey of a nursing home resident with relatives from entry into the house until death. The most burdensome ethical dilemmas are not the ones around death and dying but rather those relating to small-scale everyday work/life issues. Sharing experiences and feelings in ethical discussions provides relief. Emotions are important facilitators of insight into ethical dilemmas. Gender issues can be observed in care situations as well as in the organisational structure of nursing homes. Opportunities to share experiences and perspectives around ethical questions in interdisciplinary group discussions help professionals to better understand difficult issues and find appropriate ways of managing them. There is a need for communication structures such as facilitated ethical discussions that enable nursing home staff to reflect their everyday decisions. Expression of emotions should be encouraged in ethical decision-making processes in nursing homes. Gender-sensitive reflection supports the development of palliative care as organisational culture. © 2014 John Wiley & Sons Ltd.

[The pediatric patient at the end-of-life. A challenge for its identification and treatment. A survey in pediatricians and medical residents].

PubMed

Rendón-Macías, Mario Enrique; Olvera-González, Héctor; Villasís-Keever, Miguel Angel

2011-01-01

Identification of pediatric patients at the end-of-life is not easy because criteria used are based on adults' criteria. In this survey we explore the children end-of-life definition pediatricians have, as well as to determine which interventions they use when caring a patient at end-of-life. Tertiary referral pediatric hospital. Staff pediatricians (SP) and medical residents (MR). A self-administrated questionnaire was built and validated. It contains five vignettes of pediatric patients: Two with WHO criteria for an end-of-life condition (EC) and three without an end-of-life condition (NEC). PARTICIPANTS identified each patient with or without an end-of-life condition, and which palliative actions they would perform accordingly Their responses were recorded in a 4-option Likert scale. Ordinal regression was used to assess if some of the participants' characteristics were related to the identification of an end-of-life condition. Response rate was 84.2% (128/152); of whom 63 were SP and 65 MR. EC cases were well identified in 90 and 93%, while NEC in 30 and 40%, respectively Palliative actions were more according in EC patients, but around 20% would not provide them. Among NEC patients, there were more disparities of palliative actions to be delivered, and it was statistically significantly. Ordinal regression showed that some participants' characteristics are associated to the appropriate identification of end-of-life patients; however, these factors were not consistent across the five scenarios. Among pediatricians, criteria of end-of-life conditions are not well established, neither the palliative actions. Educational interventions are needed to improve the quality of life of these children.

Demoralization Scale in Spanish-Speaking Palliative Care Patients.

PubMed

Rudilla, David; Galiana, Laura; Oliver, Amparo; Barreto, Pilar

2016-04-01

Among the approaches to the demoralization syndrome, the one proposed by Kissane et al. is prevalent in the literature. These authors developed the Demoralization Scale (DS) to assess emotional distress, conceived as demoralization. To present the Spanish adaptation of the Demoralization Scale in palliative care patients, with a new and more comprehensive approach to its factorial structure. A cross-sectional study was carried out in 226 Spanish palliative care patients in three different settings: hospital, home care unit, and continued care unit. Outcome measures included the DS and the Hospital Anxiety and Depression Scale. Analyses comprised confirmatory factor analyses to test the original, German, and Irish structure of the DS, exploratory structural equation modeling (ESEM), estimations of internal consistency, and multivariate analyses of variance for criterion-related validity. The confirmatory factor analyses showed inappropriate fit for the previous structures when studied in the Spanish version of the DS. With ESEM, the best fitting structure was the five-factor solution, without item 18. Reliability results offered good estimations of internal consistency for all the dimensions except for sense of failure. Cronbach alpha coefficients were appropriate for the dimensions of loss of meaning (0.86), helplessness (0.79), disheartenment (0.88), and dysphoria (0.80), but low reliability was found for sense of failure (0.62). Convergent and discriminant validity showed positive correlations between demoralization, anxiety, and depression. Patients with higher levels of anxiety had higher scores on every dimension of demoralization, and those with higher levels of depression had higher scores on loss of meaning, disheartenment, and sense of failure, but not on dysphoria or helplessness. The Spanish adaptation of the DS has shown appropriate psychometric properties. It has been useful to differentiate between depression and the demoralization syndrome, pointing to helplessness and dysphoria as unique characteristics of demoralized palliative care patients. Copyright © 2016. Published by Elsevier Inc.

A multi-professional educational intervention to improve and sustain respondents' confidence to deliver palliative care: A mixed-methods study.

PubMed

Reed, Elizabeth; Todd, Jennifer; Lawton, Sally; Grant, Robert; Sadler, Clair; Berg, Jane; Lucas, Caroline; Watson, Max

2018-02-01

Education has been highlighted as fundamental in equipping healthcare professionals with essential knowledge and skills to provide good end-of-life care. Multiprofessional educational programmes have a positive influence on knowledge, attitude and confidence but few have sought to understand the longer term impact on care delivery. The European Certificate in Essential Palliative Care is an 8-week home-study-based programme for healthcare professionals and is currently run in nine centres. Successful candidates have undertaken the course from their own countries around the world. This article describes the evaluation of the European Certificate in Essential Palliative Care which has been evolving over 15 years. To evaluate the impact an educational intervention has on participants' confidence in palliative care, to determine whether this is sustained over time and explore participants' perception of the influence of the course on confidence. A mixed-method longitudinal approach. A survey using a self-efficacy scale was emailed to 342 candidates who received an educational intervention and semi-structured interviews to a sub-sample of 15 candidates at baseline, 3 and 6 months. At 3 months, candidates had almost 20 times higher odds of being above any given level of confidence than at baseline which was sustained at 6 months. Qualitative analysis identified examples of increased competence and confidence improving palliative care delivery. Findings suggest that the European Certificate in Essential Palliative Care improves confidence in palliative care and that this is sustained over time with evidence of confidence in symptom control, communication and a holistic approach in clinical practice.

Working in silos? - Head & Neck cancer patients during and after treatment with or without early palliative care referral.

PubMed

Ullgren, Helena; Kirkpatrick, Lily; Kilpeläinen, Sini; Sharp, Lena

2017-02-01

The primary aim was to describe patients with Head and Neck (H&N) cancer referred to palliative care and how the care transition from acute oncological to palliative care impacted on both Health related quality of life (HRQoL) and information. The secondary aim was to explore H&N cancer patients' HRQoL and perceived information. H&N cancer patients were identified via the Swedish Cancer Register. Data were collected using the following questionnaires; European Organization for Research and Treatment of Cancer (EORTC) QLQ C-30, INFO25, and a study-specific questionnaire. Out of 289 patients, 203 (70%) responded and among these, 43 (21%) reported being referred to palliative care. Global health was the lowest reported functional scale (median score = 67) and fatigue (median scores 33) the highest reported symptom (QLQ C-30). Patients with a written care plan were significantly more satisfied with information regarding self-care compared to patients without a care plan. Patients referred to palliative care were less satisfied with information regarding disease (p < 0.000), the spread of the disease (p < 0.001) and were more likely to visit hospital emergency departments (43% vs. 19% p < 0.000). To avoid H&N cancer care in silos, a closer integration between the oncology and the palliative care team is needed. Further research on the complex situation of having oncological treatment concurrent with palliative care, is needed. Copyright © 2016 The Authors. Published by Elsevier Ltd.. All rights reserved.

[Perception of knowledge in palliative care housing for the elderly workers in a basic health zone].

PubMed

Sánchez-Holgado, J; Gonzalez-Gonzalez, J; Torijano-Casalengua, M L

2016-01-01

To analyze the level of knowledge in palliative care that health and non health housing for the elderly workers refer, to study the differences between professional categories and to detect their interest in receiving palliative care training. Cross-sectional study conducted among physicians, nurses, physiotherapists, nursing assistant and occupational therapists applying a questionnaire assisting terminal patients with 22 items grouped into four sections: generalities palliative care, physical care, psycho-emotional and spiritual. Each question is answered using a four point scale in much-regulate-little-nothing. 86.8% of respondents know quite what they mean or regular palliative care. 3.8% consider themselves sufficiently trained in palliative care. We found significant differences in non-pharmacological management of dyspnea and insomnia where concerns have less knowledge worker. Medicine and nursing reported having more knowledge in the recognition of a tumor ulcer. There is a very high interest in receiving palliative care training and these are considered very useful. Required impact on the acquisition of knowledge in the medical staff not optional as to non-pharmacological management of major symptoms It also emphasizes the need to approach not to question the patient's pain by physicians. The test to detect cognitive impairment are not well known for nursing assistants. The spiritual realm is the acceptable level of knowledge on the part of all professional categories surveyed. Copyright © 2014 Sociedad Española de Médicos de Atención Primaria (SEMERGEN). Publicado por Elsevier España, S.L.U. All rights reserved.

Palliative care team visits. Qualitative study through participant observation

PubMed Central

Bueno Pernias, Maria José; Hueso Montoro, César; Guardia Mancilla, Plácido; Montoya Juárez, Rafael; García Caro, Maria Paz

2016-01-01

Objectives: To describe the clinical encounters that occur when a palliative care team provides patient care and the features that influence these encounters and indicate whether they are favorable or unfavorable depending on the expectations and feelings of the various participants. Methods: A qualitative case study conducted via participant observation. A total of 12 observations of the meetings of palliative care teams with patients and families in different settings (home, hospital and consultation room) were performed. The visits were follow-up or first visits, either scheduled or on demand. Content analysis of the observation was performed. Results: The analysis showed the normal follow-up activity of the palliative care unit that was focused on controlling symptoms, sharing information and providing advice on therapeutic regimens and care. The environment appeared to condition the patients' expressions and the type of patient relationship. Favorable clinical encounter conditions included kindness and gratitude. Unfavorable conditions were deterioration caused by approaching death, unrealistic family objectives and limited resources. Conclusion: Home visits from basic palliative care teams play an important role in patient and family well-being. The visits seem to focus on controlling symptoms and are conditioned by available resources. PMID:27226663

The effects of community-wide dissemination of information on perceptions of palliative care, knowledge about opioids, and sense of security among cancer patients, their families, and the general public.

PubMed

Akiyama, Miki; Hirai, Kei; Takebayashi, Toru; Morita, Tatsuya; Miyashita, Mitsunori; Takeuchi, Ayano; Yamagishi, Akemi; Kinoshita, Hiroya; Shirahige, Yutaka; Eguchi, Kenji

2016-01-01

Prejudices against palliative care are a potential barrier to quality end-of-life care. There have been few large-scale community-wide interventions to distribute appropriate information about palliative care, and no studies have investigated their impact on cancer patients, their families, and the general public. Thus, we conducted a 3-year community intervention and evaluated the effects of distributing such information at the community level, and explored associations among levels of exposure, perceptions, knowledge, and the sense of security achieved. Over a period of 3 years, we provided flyers, booklets, posters, and public lectures about palliative care in four regions of Japan, and carried out pre- and post-intervention surveys with repeated cross-sectional samplings of cancer patients (pre 859, post 857), bereaved family members (1110, 1137), and the general public (3984, 1435). The levels of exposure to the provided information were measured by a multiple-choice questionnaire after intervention. Multiple logistic regression analyses were used to estimate multivariable-adjusted odds ratios (ORs) for perceptions of palliative care, knowledge about opioids, and sense of security among the exposure groups. Overall perceptions of palliative care, opioids, and receiving care at home improved significantly among the general public and families, but not among the patients at the community level. However, multiple regression revealed that patients of extensive exposure category had significantly more positive perceptions of palliative care to those of non-exposure category (p = 0.02). The sense of security regarding cancer care of all patients, family members, and the general public improved. Among others, the respondents who reported extensive exposure in the general public and family members scored significantly higher sense of security. Our findings indicate that providing palliative care information via small media and lectures in the community is effective in improving perceptions of palliative care and knowledge about opioids among the community dwellers, especially for caregivers of the patients. The acquisition of adequate knowledge about palliative care from various information sources may improve people's sense of security regarding cancer.

The instrument 'sense of security in care--patients' evaluation': its development and presentation.

PubMed

Krevers, Barbro; Milberg, Anna

2014-08-01

The aim of this paper is to report the development, construction, and psychometric properties of the new instrument Sense of Security in Care - Patients' Evaluation (SEC-P) in palliative home care. The preliminary instrument was based on a review of the literature and an analysis of qualitative interviews with patients about their sense of security. To test the instrument, 161 patients (58% women) in palliative home care were recruited and participated in a structured interview based on a comprehensive questionnaire (response rate 73%). We used principal component analysis to identify subscales and tested the construction in correlation with other scales and questions representing concepts that we expected to be related to sense of security in care. The principal component analysis resulted in three subscales: Care Interaction, Identity, and Mastery, built on a total of 15 items. The component solution had an explained variance of 55%. Internal consistency of the subscales ranged from 0.84 to 0.69. Inter-scale correlations varied between 0.40 and 0.59. The scales were associated to varying degrees with the quality of the care process, perceived health, quality of life, stress, and general sense of security. The developed SEC-P provides a three-component assessment of palliative home care settings using valid and reliable scales. The scales were associated with other concepts in ways that were expected. The SEC-P is a manageable means of assessment that can be used to improve quality of care and in research focusing on patients' sense of security in care. Copyright © 2014 John Wiley & Sons, Ltd.

Can Palliative Home Care Reduce 30-Day Readmissions? Results of a Propensity Score Matched Cohort Study

PubMed Central

Ranganathan, Anjana; Dougherty, Meredith; Waite, David

2013-01-01

Abstract Objective This study examined the impact of palliative home nursing care on rates of hospital 30-day readmissions. Methods The electronic health record based retrospective cohort study was performed within home care and palliative home care programs. Participants were home care patients discharged from one of three urban teaching hospitals. Outcome measures were propensity score matched rates of hospital readmissions within 30 days of hospital discharge. Results Of 406 palliative home care patients, matches were identified for 392 (96%). Of 15,709 home care patients, 890 were used at least once as a match for palliative care patients, for a total final sample of 1282. Using the matched sample we calculated the average treatment effect for treated patients. In this sample, palliative care patients had a 30-day readmission probability of 9.1% compared to a probability of 17.4% in the home care group (mean ATT: 8.3%; 95% confidence interval [CI] 8.0%–8.6%). This effect persisted after adjustment for visit frequency. Conclusions Palliative home care may offer benefits to health systems by allowing patients to remain at home and thereby avoiding 30-day rehospitalizations. PMID:24007348

Measuring healthcare integration: Operationalization of a framework for a systems evaluation of palliative care structures, processes, and outcomes.

PubMed

Bainbridge, Daryl; Brazil, Kevin; Ploeg, Jenny; Krueger, Paul; Taniguchi, Alan

2016-06-01

Healthcare integration is a priority in many countries, yet there remains little direction on how to systematically evaluate this construct to inform further development. The examination of community-based palliative care networks provides an ideal opportunity for the advancement of integration measures, in consideration of how fundamental provider cohesion is to effective care at end of life. This article presents a variable-oriented analysis from a theory-based case study of a palliative care network to help bridge the knowledge gap in integration measurement. Data from a mixed-methods case study were mapped to a conceptual framework for evaluating integrated palliative care and a visual array depicting the extent of key factors in the represented palliative care network was formulated. The study included data from 21 palliative care network administrators, 86 healthcare professionals, and 111 family caregivers, all from an established palliative care network in Ontario, Canada. The framework used to guide this research proved useful in assessing qualities of integration and functioning in the palliative care network. The resulting visual array of elements illustrates that while this network performed relatively well at the multiple levels considered, room for improvement exists, particularly in terms of interventions that could facilitate the sharing of information. This study, along with the other evaluative examples mentioned, represents important initial attempts at empirically and comprehensively examining network-integrated palliative care and healthcare integration in general. © The Author(s) 2016.

Late referral to palliative care services in Korea.

PubMed

Baek, Young Ji; Shin, Dong Wook; Choi, Jin Young; Kang, Jina; Mo, Ha Na; Kim, Yang Hyeok; Kim, Sohee; Jung, Kyu Won; Joo, Jisoo; Park, Eun-Cheol

2011-04-01

Although timely referral to palliative care services can help improve quality of life by minimizing patient and family suffering during a life-threatening illness, it remains unclear whether patients in Korea who suffer from advanced cancer are referred to palliative care services in a timely manner. We aimed to investigate the timeliness of patient referral to palliative care services in Korea by examining the duration of survival after enrollment and identify the factors contributing to earlier or later referral. Patient- and episode-level data were collected from 3867 terminal cancer patients, who were registered in 34 inpatient palliative care services designated by the Ministry of Health, Welfare, and Family Affairs. Cox proportional hazard models were used to determine factors associated with the duration of survival after enrollment in palliative care services. The median duration of survival after enrollment in palliative care services was 18 days. Male sex, liver cancer diagnosis, poor performance status, being covered by National Health Insurance, and being married were significantly associated with shorter duration of survival after enrollment, whereas a prostate cancer diagnosis was associated with longer survival. Korean terminal cancer patients are referred to palliative care very late, and the timing appears to be influenced by some socioeconomic and medical factors. Interventions, such as physician education and establishing palliative care teams, are required to promote earlier referrals in Korea. Copyright © 2011 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

[Simulation as possible training for palliative emergencies: prospective initial data analysis of participants from two simulation training sessions].

PubMed

Wiese, C H R; Bosse, G; Schröder, T; Lassen, C L; Bundscherer, A C; Graf, B M; Zausig, Y A

2015-01-01

Palliative emergencies describe an acute situation in patients with a life-limiting illness. At present defined curricula for prehospital emergency physician training for palliative emergencies are limited. Simulation-based training (SBT) for such palliative emergency situations is an exception both nationally and internationally. This article presents the preparation of recommendations in the training and development of palliative care emergency situations. A selected literature search was performed using PubMed, EMBASE, Medline and the Cochrane database (1990-2013). Reference lists of included articles were checked by two reviewers. Data of the included articles were extracted, evaluated und summarized. In the second phase the participants of two simulated scenarios of palliative emergencies were asked to complete an anonymous 15-item questionnaire. The results of the literature search and the questionnaire-based investigation were compared and recommendations were formulated based on the results. Altogether 30 eligible national and international articles were included. Overall, training curricula in palliative emergencies are currently being developed nationally and internationally but are not yet widely integrated into emergency medical training and education. In the second part of the investigation, 25 participants (9 male, 16 female, 20 physicians and 5 nurses) were included in 4 multiprofessional emergency medical simulation training sessions. The most important interests of the participants were the problems for training and further education concerning palliative emergencies described in the national and international literature. The literature review and the expectations of the participants underlined that the development and characteristics of palliative emergencies will become increasingly more important in outpatient emergency medicine. All participants considered palliative care to be very important concerning the competency for end-of-life decisions in palliative patients. For this reason, special curricula and simulation for dealing with palliative care patients and special treatment decisions in emergency situations seem to be necessary.

Palliative care for patients with Parkinson's disease: study protocol for a mixed methods study.

PubMed

Lennaerts, Herma; Groot, Marieke; Steppe, Maxime; van der Steen, Jenny T; Van den Brand, Marieke; van Amelsvoort, Dorian; Vissers, Kris; Munneke, Marten; Bloem, Bastiaan R

2017-11-25

Parkinson's disease (PD) is a chronic, progressive neurological disorder with many intractable consequences for patients and their family caregivers. Little is known about the possibilities that palliative care could offer to patients and their proxies. Guidelines strongly recommend palliative care to improve the quality of life and - if needed - the quality of dying. However, providing palliative care to persons with PD involves specific challenges. For example, a timely initiation of palliative interventions is difficult because due to the gradually progressive nature of PD, there is often no clear marker for the transition from curative towards palliative care. Furthermore, there is little evidence to indicate which palliative care interventions are effective. Here, we describe the contours of a study that aims to examine the experiences of patients, (bereaved) family caregivers and professionals, with the aim of improving our knowledge about palliative care needs in PD. We will perform a mixed methods study to evaluate the experiences of patients, (bereaved) family caregivers and palliative care professionals. In this study, we focus on Quality of Life, Quality of Care, perceived symptoms, caregiver burden and collaboration between professionals. In phase 1, we will retrospectively explore the views of bereaved family caregivers and professionals by conducting individual interviews and focus group interviews. In phase 2, 5-15 patients with PD and their family caregiver will be followed prospectively for 8-12 months. Data collection will involve semi-structured interviews and questionnaires at three consecutive contact moments. Qualitative data will be audio recorded, transcribed and analyzed using CAQDAS. If patients pass away during the study period, a bereavement interview will be done with the closest family caregiver. This study will offer a broad perspective on palliative care, and the results can be used to inform a palliative care protocol for patients with PD. By describing the experiences of patients, (bereaved) family caregivers and professionals with palliative care, this investigation will also establish an important ground for future intervention research.

[Communication strategies used by health care professionals in providing palliative care to patients].

PubMed

Trovo de Araújo, Monica Martins; da Silva, Maria Júlia Paes

2012-06-01

The objective of this study is to verify the relevance and utilization of communication strategies in palliative care. This is a multicenter qualitative study using a questionnaire, performed from August of 2008 to July of 2009 with 303 health care professionals who worked with patients receiving palliative care. Data were subjected to descriptive statistical analysis. Most participants (57.7%) were unable to state at least one verbal communication strategy, and only 15.2% were able to describe five signs or non-verbal communication strategies. The verbal strategies most commonly mentioned were those related to answering questions about the disease/treatment. Among the non-verbal strategies used, the most common were affective touch, looking, smiling, physical proximity, and careful listening. Though professionals have assigned a high degree of importance to communication in palliative care, they showed poor knowledge regarding communication strategies. Final considerations include the necessity of training professionals to communicate effectively in palliative care.

Can elearning be used to teach palliative care? - medical students' acceptance, knowledge, and self-estimation of competence in palliative care after elearning.

PubMed

Schulz-Quach, Christian; Wenzel-Meyburg, Ursula; Fetz, Katharina

2018-04-27

Undergraduate palliative care education (UPCE) was mandatorily incorporated in medical education in Germany in 2009. Implementation of the new cross-sectional examination subject of palliative care (QB13) continues to be a major challenge for medical schools. It is clear that there is a need among students for more UPCE. On the other hand, there is a lack of teaching resources and patient availabilities for the practical lessons. Digital media and elearning might be one solution to this problem. The primary objective of this study is to evaluate the elearning course Palliative Care Basics, with regard to students' acceptance of this teaching method and their performance in the written examination on the topic of palliative care. In addition, students' self-estimation in competence in palliative care was assessed. To investigate students' acceptance of the elearning course Palliative Care Basics, we conducted a cross-sectional study that is appropriate for proof-of-concept evaluation. The sample consisted of three cohorts of medical students of Heinrich Heine University Dusseldorf (N = 670). The acceptance of the elearning approach was investigated by means of the standard evaluation of Heinrich Heine University. The effect of elearning on students' self-estimation in palliative care competencies was measured by means of the German revised version of the Program in Palliative Care Education and Practice Questionnaire (PCEP-GR). The elearning course Palliative Care Basics was well-received by medical students. The data yielded no significant effects of the elearning course on students' self-estimation in palliative care competencies. There was a trend of the elearning course having a positive effect on the mark in written exam. Elearning is a promising approach in UPCE and well-accepted by medical students. It may be able to increase students' knowledge in palliative care. However, it is likely that there are other approaches needed to change students' self-estimation in palliative care competencies. It seems plausible that experience-based learning and encounters with dying patients and their relatives are required to increases students' self-estimation in palliative care competencies. Heinrich Heine University Medical School Clinical Trial Registry No. 4876 (date of approval 26.11.2014).

Physicians' opinions on palliative care and euthanasia in the Netherlands.

PubMed

Georges, Jean-Jacques; Onwuteaka-Philipsen, Bregje D; van der Heide, Agnes; van der Wal, Gerrit; van der Maas, Paul J

2006-10-01

In recent decades significant developments in end-of-life care have taken place in The Netherlands. There has been more attention for palliative care and alongside the practice of euthanasia has been regulated. The aim of this paper is to describe the opinions of physicians with regard to the relationship between palliative care and euthanasia, and determinants of these opinions. Cross-sectional. Representative samples of physicians (n = 410), relatives of patients who died after euthanasia and physician-assisted suicide (EAS; n = 87), and members of the Euthanasia Review Committees (ERCs; n = 35). Structured interviews with physicians and relatives of patients, and a written questionnaire for the members of the ERCs. Approximately half of the physicians disagreed and one third agreed with statements describing the quality of palliative care in The Netherlands as suboptimal and describing the expertise of physicians with regard to palliative care as insufficient. Almost two thirds of the physicians disagreed with the suggestion that adequate treatment of pain and terminal care make euthanasia redundant. Having a religious belief, being a nursing home physician or a clinical specialist, never having performed euthanasia, and not wanting to perform euthanasia were related to the belief that adequate treatment of pain and terminal care could make euthanasia redundant. The study results indicate that most physicians in The Netherlands are not convinced that palliative care can always alleviate all suffering at the end of life and believe that euthanasia could be appropriate in some cases.

Role of Physical Therapy Intervention in Patients With Life-Threatening Illnesses.

PubMed

Putt, Kaitlyn; Faville, Kelli Anne; Lewis, David; McAllister, Kevin; Pietro, Maria; Radwan, Ahmed

2017-03-01

Physical therapy encompasses the skilled treatment and care for patients across the life span through a multitude of different practice settings. This includes caring for individuals within end-of-life or palliative care settings. The goal of treatment in this stage of care is to relieve physical, social, psychological, and spiritual suffering in order to improve overall quality of life in patients with terminal illnesses. There has been limited research conducted to investigate the utilization of physical therapy interventions in palliative care settings. The purpose of this study was to contribute to the current research involving physical therapy and end-of-life care in terms of its efficacy, value, and how this value is perceived by patients and their caregivers. This was completed by independently screening and reviewing the studies that were published between the years 1994 and 2014 and related to this topic. The databases and journals searched included CINAHL, PUBMED, MEDLINE, Cochrane, PEDro, the Journal of Palliative Care, the American Journal of Hospice and Palliative Medicine, and Google Scholar. Thirteen qualitative articles were selected which met all inclusion criteria and discussed the role of physical therapy intervention in the palliative care setting. Methodological quality of articles were assessed using the QASP, scale and their findings were summarized and presented in table format. These articles support the utilization of physical therapy in palliative care settings and emphasizes the impact of physical therapy on improving patients' physical, social, and emotional well-being.

Medical Students' Death Anxiety: Severity and Association With Psychological Health and Attitudes Toward Palliative Care.

PubMed

Thiemann, Pia; Quince, Thelma; Benson, John; Wood, Diana; Barclay, Stephen

2015-09-01

Death anxiety (DA) is related to awareness of the reality of dying and death and can be negatively related to a person's psychological health. Physicians' DA also may influence their care for patients approaching death. Doctors face death in a professional context for the first time at medical school, but knowledge about DA among medical students is limited. This study examined medical students' DA in relation to: 1) its severity, gender differences, and trajectory during medical education and 2) its associations with students' attitudes toward palliative care and their psychological health. Four cohorts of core science and four cohorts of clinical students at the University of Cambridge Medical School took part in a questionnaire survey with longitudinal follow-up. Students who provided data on the revised Collett-Lester Fear of Death Scale were included in the analysis (n = 790). Medical students' DA was moderate, with no gender differences and remained very stable over time. High DA was associated with higher depression and anxiety levels and greater concerns about the personal impact of providing palliative care. The associations between high DA and lower psychological health and negative attitudes toward palliative care are concerning. It is important to address DA during medical education to enhance student's psychological health and the quality of their future palliative care provision. Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Factors associated with emergency services use in Taiwanese advanced cancer patients receiving palliative home care services during out-of-hours periods: a retrospective medical record study.

PubMed

Kao, Yee-Hsin; Liu, Yao-Ting; Koo, Malcolm; Chiang, Jui-Kun

2018-03-12

For patients receiving palliative home care, the need to visit the emergency department is considered to be an indicator of poor quality care. The situation can be particularly distressing when it occurs outside of normal hours of palliative home care service. The aim of this study was to investigate the factors for emergency department use during out-of-hours periods of palliative home care service among advanced cancer patients in Taiwan. This case-control study was based on a retrospective medical chart review (January 2010 to December 2012) of advanced cancer patients who were receiving palliative home care in a community hospital in south Taiwan. The use of emergency medical services by these patients was dichotomized into either normal hours (8 a.m. to midnight, Monday to Friday, excluding public holidays) of palliative home care or outside normal hours. Logistic regression analyses were performed to evaluate factors associated with emergency services use during out-of-hours period of palliative home care. Of the 94 patients receiving palliative home care, 65 had used emergency services at least once during the 3-year study period. Of these 65 patients, 40% used emergency services during out-of-hours of palliative home care. Patients with distressing conditions (defined as the occurrence of any two conditions of dyspnea, change of consciousness, or gastrointestinal bleeding) were significantly more likely to use emergency services during out-of-hours of palliative home care. Patients at risk of developing dyspnea, change of consciousness, or gastrointestinal bleeding should be provided with relevant information regarding these symptoms and signs.

Impact of specialist home-based palliative care services in a tertiary oncology set up: a prospective non-randomized observational study.

PubMed

Dhiliwal, Sunil R; Muckaden, Maryann

2015-01-01

Home-based specialist palliative care services are developed to meet the needs of the patients in advanced stage of cancer at home with physical symptoms and distress. Specialist home care services are intended to improve symptom control and quality of life, enable patients to stay at home, and avoid unnecessary hospital admission. Total 690 new cases registered under home-based palliative care service in the year 2012 were prospectively studied to assess the impact of specialist home-based services using Edmonton symptom assessment scale (ESAS) and other parameters. Out of the 690 registered cases, 506 patients received home-based palliative care. 50.98% patients were cared for at home, 28.85% patients needed hospice referral and 20.15% patients needed brief period of hospitalization. All patients receiving specialist home care had good relief of physical symptoms (P < 0.005). 83.2% patients received out of hours care (OOH) through liaising with local general practitioners; 42.68% received home based bereavement care and 91.66% had good bereavement outcomes. Specialist home-based palliative care improved symptom control, health-related communication and psychosocial support. It promoted increased number of home-based death, appropriate and early hospice referral, and averted needless hospitalization. It improved bereavement outcomes, and caregiver satisfaction.

Congenital malformations, palliative care and postnatal redirection to more intensive treatment - a review at a Swiss tertiary center.

PubMed

Pfeifer, Ulrich; Gubler, Deborah; Bergstraesser, Eva; Bassler, Dirk

2018-05-01

The so-called lethal malformations pose ethical challenges. Most affected fetuses die before or at birth. Live-born neonates commonly receive palliative care. If the postnatal course is better than expected, redirection towards more treatment may occur. We aimed to analyze this in a Swiss patient cohort. Over 6 years, fetal malformation was suspected in 1113 cases. We identified patients prenatally assigned to palliative care, assessed pre- and postnatal diagnoses, and outcomes. Fourteen neonates received palliative care. Eleven patients received palliative care following late termination of pregnancy, for three, palliative care was planned and the fetus died during delivery, for two, the outcome was unknown (incomplete documentation). Genetic testing was performed in 50%. The predominant diagnostic group was central nervous system malformations (33%), followed by chromosomal aberrations (20%) and renal anomalies (17%). One child assigned to palliative care was resuscitated. Antenatal findings were anhydramnios and pulmonary hypoplasia. Postnatally, respiration was better than expected. The neonate was admitted to intensive care, died on day one. Nervous system malformations seem to be a major criterion for foregoing life-sustaining interventions. Redirection towards more treatment is rare. This may reflect precise prenatal prognostication; a degree of self-fulfilling prophecy cannot be excluded.

Information needs about palliative care and euthanasia: A survey of patients in different phases of their cancer trajectory.

PubMed

Beernaert, Kim; Haverbeke, Chloë; Van Belle, Simon; Deliens, Luc; Cohen, Joachim

2018-01-01

We assessed information provision and information needs about illness course, treatments, palliative care and euthanasia in cancer patients. Cancer patients consulting a university hospital (N=620) filled out a questionnaire. Their cancer related data were collected through the treating oncologist. This study is performed in Belgium, where "palliative care for all" is a patient's right embedded in the law and euthanasia is possible under certain conditions. Around 80% received information about their illness course and treatments. Ten percent received information about palliative care and euthanasia. Most information about palliative care and euthanasia was given when the patient had a life expectancy of less than six months. However, a quarter of those in earlier phases in their illness trajectory, particularly those who experienced high pain, fatigue or nausea requested more information on these topics. Many patients want more information about palliative care and euthanasia than what is currently provided, also those in an earlier than terminal phase of their disease. Healthcare professionals should be more responsive, already from diagnosis, to the information needs about palliative care and possible end-of-life decisions. This should be patient-tailored, as some patients want more and some patients want less information. Copyright © 2017 Elsevier B.V. All rights reserved.

How are palliative care cancer populations characterized in randomized controlled trials? A literature review.

PubMed

Sigurdardottir, Katrin Ruth; Oldervoll, Line; Hjermstad, Marianne Jensen; Kaasa, Stein; Knudsen, Anne Kari; Løhre, Erik Torbjørn; Loge, Jon Håvard; Haugen, Dagny Faksvåg

2014-05-01

The difficulties in defining a palliative care patient accentuate the need to provide stringent descriptions of the patient population in palliative care research. To conduct a systematic literature review with the aim of identifying which key variables have been used to describe adult palliative care cancer populations in randomized controlled trials (RCTs). The data sources used were MEDLINE (1950 to January 25, 2010) and Embase (1980 to January 25, 2010), limited to RCTs in adult cancer patients with incurable disease. Forty-three variables were systematically extracted from the eligible articles. The review includes 336 articles reporting RCTs in palliative care cancer patients. Age (98%), gender (90%), cancer diagnosis (89%), performance status (45%), and survival (45%) were the most frequently reported variables. A large number of other variables were much less frequently reported. A substantial variation exists in how palliative care cancer populations are described in RCTs. Few variables are consistently registered and reported. There is a clear need to standardize the reporting. The results from this work will serve as the basis for an international Delphi process with the aim of reaching consensus on a minimum set of descriptors to characterize a palliative care cancer population. Copyright © 2014 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

An Australian casemix classification for palliative care: technical development and results.

PubMed

Eagar, Kathy; Green, Janette; Gordon, Robert

2004-04-01

To develop a palliative care casemix classification for use in all settings including hospital, hospice and home-based care. 3866 palliative care patients who, in a three-month period, had 4596 episodes of care provided by 58 palliative care services in Australia and New Zealand. A detailed clinical and service utilization profile was collected on each patient with staff time and other resources measured on a daily basis. Each day of care was costed using actual cost data from each study site. Regression tree analysis was used to group episodes of care with similar costs and clinical characteristics. In the resulting classification, the Australian National Sub-acute and Non-acute Patient (AN-SNAP) Classification Version 1, the branch for classifying inpatient palliative care episodes (including hospice care) has 11 classes and explains 20.98% of the variance in inpatient palliative care phase costs using trimmed data. There are 22 classes in the ambulatory palliative care branch that explains 17.14% variation in ambulatory phase cost using trimmed data. The term 'subacute' is used in Australia to describe health care in which the goal--a change in functional status or improvement in quality of life--is a better predictor of the need for, and the cost of, care than the patient's underlying diagnosis. The results suggest that phase of care (stage of illness) is the best predictor of the cost of Australian palliative care. Other predictors of cost are functional status and age. In the ambulatory setting, symptom severity and the model of palliative care are also predictive of cost. These variables are used in the AN-SNAP Version 1 classification to create 33 palliative care classes. The classification has clinical meaning but the overall statistical performance is only moderate. The structure of the classification allows for it to be improved over time as models of palliative care service delivery develop.

Differential effects of early palliative care based on the age and sex of patients with advanced cancer from a randomized controlled trial.

PubMed

Nipp, Ryan D; El-Jawahri, Areej; Traeger, Lara; Jacobs, Jamie M; Gallagher, Emily R; Park, Elyse R; Jackson, Vicki A; Pirl, William F; Temel, Jennifer S; Greer, Joseph A

2018-04-01

Early palliative care interventions enhance patient outcomes, including quality of life, mood, and coping, but it remains unclear whether certain subgroups of patients are more likely to benefit from early palliative care. We explored whether age and sex moderate the improved outcomes seen with early palliative care. We performed a secondary analysis of data from a randomized trial of 350 patients with advanced lung and non-colorectal gastrointestinal cancer. Patients received an early palliative care intervention integrated with oncology care or usual oncology care alone. We used linear regression to determine if age (older or younger than 65) and sex moderated the effects of the intervention on quality of life (Functional Assessment of Cancer Therapy-General (FACT-G)), depression symptoms (Patient Health Questionnaire 9 (PHQ-9)), and coping (Brief COPE) within lung and gastrointestinal subgroups. At 24 weeks, younger patients with lung cancer receiving early palliative care reported increased use of active coping ( B = 1.74; p = 0.02) and decreased use of avoidant coping ( B = -0.97; p = 0.02), but the effects of early palliative care on these outcomes were not significant for older patients. Male patients with lung cancer assigned to early palliative care reported better quality of life (FACT-G: B = 9.31; p = 0.01) and lower depression scores (PHQ-9: B = -2.82; p = 0.02), but the effects of early palliative care on these outcomes were not significant for female patients. At 24 weeks, we found no age or sex moderation effects within the gastrointestinal cancer subgroup. Age and sex moderate the effects of early palliative care for patients with advanced lung cancer. Early palliative care may need to be tailored to individuals' unique sociodemographic and clinical characteristics.

Level of Discomfort Decreases After the Administration of Continuous Palliative Sedation: A Prospective Multicenter Study in Hospices and Palliative Care Units.

PubMed

van Deijck, Rogier H P D; Hasselaar, Jeroen G J; Verhagen, Stans C A H H V M; Vissers, Kris C P; Koopmans, Raymond T C M

2016-09-01

A gold standard or validated tool for monitoring the level of discomfort during continuous palliative sedation (CPS) is lacking. Therefore, little is known about the course of discomfort in sedated patients, the efficacy of CPS, and the determinants of discomfort during CPS. To identify the course of discomfort in patients receiving CPS. A prospective observational multicenter study in nine hospices and palliative care units was performed. The Discomfort Scale-Dementia of Alzheimer Type (DS-DAT) was independently assessed for monitoring of patient discomfort during CPS. The DS-DAT scores range from 0 (no observed discomfort) to a maximum of 27 (high level of observed discomfort). Using a mixed model, the mean group score of discomfort between four predefined time frames of CPS was compared, correcting for confounding patient characteristics. A total of 130 patients were sedated, and the DS-DAT was completed in 106 patients at least once. The median duration of the sedation in these 106 patients was 25.5 hours (range 2-161). The mean score of the DS-DAT in the phase before sedation was 12.16 (95% CI 9.83-14.50) and decreased significantly to 8.06 (95% CI 5.53-10.58) in the titration phase of sedation. The mean score of the DS-DAT in the final phase of sedation was 7.42 (95% CI 4.90-9.94). This study shows that CPS is associated with a decrease in the level of discomfort within an acceptable time frame, although in some sedated patients higher levels of discomfort in the last hours of life occurred. Although the DS-DAT seems to be of value for monitoring the level of discomfort during CPS, the results of this study should be interpreted within the constraints of the limitations, and further research on the psychometric properties of this tool is needed before the DS-DAT can be used in clinical practice. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Assessing and Responding to Palliative Care Needs in Rural Sub-Saharan Africa: Results from a Model Intervention and Situation Analysis in Malawi

PubMed Central

Kalanga, Noel; Keck, James W.; Wroe, Emily B.; Phiri, Atupere; Mayfield, Alishya; Chingoli, Felix; Beste, Jason A.; Tengatenga, Listern; Bazile, Junior

2014-01-01

Introduction Palliative care is rarely accessible in rural sub-Saharan Africa. Partners In Health and the Malawi government established the Neno Palliative Care Program (NPCP) to provide palliative care in rural Neno district. We conducted a situation analysis to evaluate early NPCP outcomes and better understand palliative care needs, knowledge, and preferences. Methods Employing rapid evaluation methodology, we collected data from 3 sources: 1) chart review of all adult patients from the NPCP’s first 9 months; 2) structured interviews with patients and caregivers; 3) semi-structured interviews with key stakeholders. Results The NPCP enrolled 63 patients in its first 9 months. Frequent diagnoses were cancer (n = 50, 79%) and HIV/AIDS (n = 37 of 61, 61%). Nearly all (n = 31, 84%) patients with HIV/AIDS were on antiretroviral therapy. Providers registered 112 patient encounters, including 22 (20%) home visits. Most (n = 43, 68%) patients had documented pain at baseline, of whom 23 (53%) were treated with morphine. A majority (n = 35, 56%) had ≥1 follow-up encounter. Mean African Palliative Outcome Scale pain score decreased non-significantly between baseline and follow-up (3.0 vs. 2.7, p = 0.5) for patients with baseline pain and complete pain assessment documentation. Providers referred 48 (76%) patients for psychosocial services, including community health worker support, socioeconomic assistance, or both. We interviewed 36 patients referred to the NPCP after the chart review period. Most had cancer (n = 19, 53%) or HIV/AIDS (n = 10, 28%). Patients frequently reported needing income (n = 24, 67%) or food (n = 22, 61%). Stakeholders cited a need to make integrated palliative care widely available. Conclusions We identified a high prevalence of pain and psychosocial needs among patients with serious chronic illnesses in rural Malawi. Early NPCP results suggest that comprehensive palliative care can be provided in rural Africa by integrating disease-modifying treatment and palliative care, linking hospital, clinic, and home-based services, and providing psychosocial support that includes socioeconomic assistance. PMID:25313997

Symptoms and health-related quality of life in patients with advanced cancer - A population-based study in Greenland.

PubMed

Augustussen, Mikaela; Sjøgren, Per; Timm, Helle; Hounsgaard, Lise; Pedersen, Michael Lynge

2017-06-01

The aims were to describe symptoms and health-related quality of life (HRQoL) in Greenlandic patients with advanced cancer and to assess the applicability and internal consistency of the Greenlandic version of the EORTC-QLQ-C30 core version 3.0. A Greenlandic version of the EORTC QLQ-C30 v.3.0 was developed. The translation process included independent forward translation, reconciliation and independent back translation by native Greenlandic-speaking translators who were fluent in English. After pilot testing, a population-based cross-sectional study of patients with advanced cancer receiving palliative treatment was conducted. Internal consistency was examined by calculating Cronbach's alpha coefficients for five function scales and three symptom scales. Of the 58 patients who participated in the study, 47% had reduced social functioning, 36% had reduced physical and role functioning and 19% had reduced emotional and cognitive functioning. Furthermore, 48% reported fatigue, and 33% reported financial problems. The Greenlandic version of the EORTC had good applicability in the assessment of symptoms and quality of life. Acceptable Cronbach's alpha coefficients (above 0.70) were observed for the physical, role and social functioning scales, the fatigue scale and the global health status scale. Patients with undergoing palliative treatment in Greenland for advanced cancer reported high levels of social and financial problems and reduced physical functioning. This indicates a potential for improving palliative care service and increasing the focus on symptom management. The Greenlandic version of the EORTC-QLQ-C30 represents an applicable and reliable tool to describe symptoms and health-related quality of life among Greenlandic patients with advanced cancer. Copyright © 2017 Elsevier Ltd. All rights reserved.

[Non-invasive ventilation improves comfort in pediatric palliative care patients].

PubMed

Bosch-Alcaraz, A

2014-01-01

To analyze the appropriate use of non-invasive ventilation and its contribution to improving comfort in pediatric palliative care patients. This is a descriptive cross-sectional study comprising 55 palliative care patients from San Juan de Dios Hospital in Barcelona. The effectiveness was evaluated using a register of socio-demographic, clinical-ventilatory and oxymetric parameters, the comfort and dyspnea's grade using Silverman Anderson scale, and pain level using pediatric scales. The effectiveness of the technique was proved by a decreased heart rate (133.53±25.8 vs. 111.04±23.1; p<0.0001), respiratory rate (35.02±12.9 vs. 25.63±5.7; p<0.0001) and an increase of partial oxygen saturation (95.7±2.9 vs. 96.87±7.2; p<0.0001) and partial oxygen saturation/fraction of inspired oxygen ratio (297.12±113.4 vs. 336.97±100.7; p<0.0001). Dyspnea and pain levels improved in 100% of the patients. The therapy was effective and the comfort improved in 100% of the patients. Copyright © 2013 Elsevier España, S.L.U. y SEEIUC. All rights reserved.

A scale for measuring feelings of support and security regarding cancer care in a region of Japan: a potential new endpoint of cancer care.

PubMed

Igarashi, Ayumi; Miyashita, Mitsunori; Morita, Tatsuya; Akizuki, Nobuya; Akiyama, Miki; Shirahige, Yutaka; Eguchi, Kenji

2012-02-01

Having a sense of security about the availability of care is important for cancer patients and their families. To develop a scale for the general population to evaluate feelings of support and security regarding cancer care, and to identify factors associated with a sense of security. A cross-sectional anonymous questionnaire was administered to 8000 subjects in four areas of Japan. Sense of security was measured using five statements and using a seven-point Likert scale: "If I get cancer 1) I would feel secure in receiving cancer treatment, 2) my pain would be well relieved, 3) medical staff will adequately respond to my concerns and pain, 4) I would feel secure as a variety of medical care services are available, and 5) I would feel secure in receiving care at home." We performed an exploratory factor analysis as well as uni- and multivariate analyses to examine factors associated with such a sense of security. The five items regarding sense of security were aggregated into one factor, and Cronbach's α was 0.91. In the Yamagata area where palliative care services were not available, the sense of security was significantly lower than in the other three regions. Female gender (P=0.035), older age (P<0.001), and having cancer (P<0.001) were significantly associated with a strong sense of security. A new scale that evaluates sense of security with regard to cancer care was developed. Future studies should examine whether establishing a regional health care system that provides quality palliative care could improve the sense of security of the general population. Copyright © 2012 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

Use of a structured palliative care summary in patients with established cancer is associated with reduced hospital admissions by out-of-hours general practitioners in Grampian.

PubMed

Ali, Asia Andeleeb; Adam, Rosalind; Taylor, David; Murchie, Peter

2013-12-01

Palliative care summaries are used by general practices to provide structured anticipatory care information to those providing care during the out-of-hours period. We hypothesised that the availability of a palliative care summary for individuals with established cancer would influence emergency hospital admission during the out-of-hours period. Each consultation with Grampian Medical Emergency Department (GMED) is recorded on the ADASTRA software system and the nature of the consultation is Read coded. We retrospectively reviewed consultations between 1 January 2011 and 31 December 2011 which had been coded as 'neoplasm' or 'terminal care'. The availability of a palliative care summary on ADASTRA and admission status were recorded. χ(2) Test of association was performed. Binary logistic regression was used for multivariate analysis exploring the effect of a palliative care summary on admission, while adjusting for important confounders. 401 patients with established cancer were identified who had presented to GMED in 2011. 35.7% had a palliative care summary available on ADASTRA. Of the 401 contacts, 100 patients were admitted to hospital. Not having a palliative care summary made admission significantly more likely; χ(2)=12.480, p=0.001. (OR 2.425, 95% CI 1.412 to 4.165). Availability of a structured palliative care plan can aid decision making in the out-of-hours period and prevent unplanned hospital admissions.

Characterizing the Role of U.S. Surgeons in the Provision of Palliative Care: A Systematic Review and Mixed-Methods Meta-Synthesis.

PubMed

Suwanabol, Pasithorn A; Kanters, Arielle E; Reichstein, Ari C; Wancata, Lauren M; Dossett, Lesly A; Rivet, Emily B; Silveira, Maria J; Morris, Arden M

2018-04-01

The provision of palliative care varies appropriately by clinical factors such as patient age and severity of disease and also varies by provider practice and specialty. Surgical patients are persistently less likely to receive palliative care than their medical counterparts for reasons that are not clear. We sought to characterize surgeon-specific determinants of palliative care in seriously ill and dying patients. We performed a systematic review of the literature focused on surgery and palliative care within PubMed, CINAHL, EMBASE, Scopus, and Ovid Medline databases from January 1, 2000 through December 31, 2016 according to Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Quantitative and qualitative studies with primary data evaluating surgeons' attitudes, knowledge, and behaviors or experiences in care for seriously ill and dying patients were selected for full review by at least two study team members based on predefined inclusion criteria. Data were extracted based on a predetermined instrument and compared across studies using thematic analysis in a meta-synthesis of qualitative and quantitative findings. A total of 2589 abstracts were identified and screened, and 35 articles (26 quantitative and nine qualitative) fulfilled criteria for full review. Among these, 17 articles explored practice and attitudes of surgeons regarding palliative and end-of-life care, 11 articles assessed training in palliative care, five characterized surgical decision making, one described behaviors of surgeons caring for seriously ill and dying patients, and one explicitly identified barriers to use of palliative care. Four major themes across studies affected receipt of palliative care for surgical patients: 1) surgeons' experience and knowledge, 2) surgeons' attitudes, 3) surgeons' preferences and decision making for treatment, and 4) perceived barriers. Among the articles reviewed, surgeons overall demonstrated insight into the benefits of palliative care but reported limited knowledge and comfort as well as a multitude of challenges to introducing palliative care to their patients. These findings indicate a need for wider implementation of strategies that allow optimal integration of palliative care with surgical decision making. Published by Elsevier Inc.

Nurses' views on their involvement in euthanasia: a qualitative study in Flanders (Belgium)

PubMed Central

de Casterlé, B Dierckx; Verpoort, C; De Bal, N; Gastmans, C

2006-01-01

Background Although nurses worldwide are confronted with euthanasia requests from patients, the views of palliative care nurses on their involvement in euthanasia remain unclear. Objectives In depth exploration of the views of palliative care nurses on their involvement in the entire care process surrounding euthanasia. Design A qualitative Grounded Theory strategy was used. Setting and participants In anticipation of new Belgian legislation on euthanasia, we conducted semistructured interviews with 12 nurses working in a palliative care setting in the province of Vlaams‐Brabant (Belgium). Results Palliative care nurses believed unanimously that they have an important role in the process of caring for a patient who requests euthanasia, a role that is not limited to assisting the physician when he is administering life terminating drugs. Nurses' involvement starts when the patient requests euthanasia and ends with supporting the patient's relatives and healthcare colleagues after the potential life terminating act. Nurses stressed the importance of having an open mind and of using palliative techniques, also offering a contextual understanding of the patient's request in the decision making process. Concerning the actual act of performing euthanasia, palliative care nurses saw their role primarily as assisting the patient, the patient's family, and the physician by being present, even if they could not reconcile themselves with actually performing euthanasia. Conclusions Based on their professional nursing expertise and unique relationship with the patient, nurses participating as full members of the interdisciplinary expert team are in a key position to provide valuable care to patients requesting euthanasia. PMID:16574869

Current palliative chemotherapy trials in the elderly neglect patient-centred outcome measures.

PubMed

van Bekkum, Marlies L; van Munster, Barbara C; Thunnissen, Peter L M; Smorenburg, Carolien H; Hamaker, Marije E

2015-01-01

The elderly comprise the majority of patients newly diagnosed with cancer. Despite this, little evidence-based data are available on the care of the growing number of older patients with cancer. The objective of the current study was to evaluate the characteristics and outcome measures of current clinical trials on palliative chemotherapy in elderly patients. Fourteen international clinical trials registries were searched using the terms "cancer" and "elderly" to identify clinical palliative chemotherapy trials designed specifically for patients aged 70+ years. From the trial protocol, data were extracted on trial characteristics and outcome measures. Of 127 trials, 81% formulated one or more stringent criteria with respect to organ function; 32% excluded patients with WHO performance status (PS) 2 and 83% with PS3. Functional outcomes, health care utilisation, cognitive function after treatment, and quality of life were reported in 6%, 3%, 6%, and 31% of trials, respectively. In only 16% of trials on palliative cancer treatment, a geriatric assessment was performed at baseline. Although recent years have seen a growing evidence base regarding fit older patients, our study suggests a lack of representative cohorts of older patients and patient-centred outcome measures in current palliative treatment trials for the elderly. Research addressing alternative outcome measures, including quality of life and impact of therapy on general functioning, cognition, and preservation of independence, and incorporation of a geriatric assessment are needed to provide elderly patients with cancer and their treating physicians with realistic information about palliative chemotherapy. Copyright © 2014 Elsevier Inc. All rights reserved.

A Home-Based Palliative Care Consult Service for Veterans.

PubMed

Golden, Adam G; Antoni, Charles; Gammonley, Denise

2016-11-01

We describe the development and implementation of a home-based palliative care consult service for Veterans with advanced illness. A retrospective chart review was performed on 73 Veterans who received a home-based palliative care consult. Nearly one-third were 80 years of age or older, and nearly one-third had a palliative diagnosis of cancer. The most common interventions of the consult team included discussion of advance directives, completion of a "do not resuscitate" form, reduction/stoppage of at least 1 medication, explanation of diagnosis, referral to home-based primary care program, referral to hospice, and assessment/support for caregiver stress. The home-based consult service was therefore able to address clinical and psychosocial issues that can demonstrate a direct benefit to Veterans, families, and referring clinicians. © The Author(s) 2015.

Professional Quality of Life among Professional Care Providers at Cancer Palliative Care Centers in Bengaluru, India.

PubMed

Kaur, Amanpreet; Sharma, Mahendra P; Chaturvedi, Santosh K

2018-01-01

Being a professional care provider at cancer palliative care settings is demanding and stressful. Literature has indicated the prevalence of high burnout (BO) and distress; however, there is a dearth of studies in India, with no study available on professional quality of life in the field of palliative care. The aim of the present study was to explore the professional quality of life, namely-compassion satisfaction [CS], burnout [BO], and secondary traumatic stress [STS] among professional care providers at cancer palliative care centers. A cross-sectional, descriptive, and quantitative study was carried out at four cancer palliative care centers in Bengaluru after the permissions and ethical approvals. The tools used were brief sociodemographic datasheet and professional quality of life (ProQoL)-Version 5 administered with 65 participants (mean age = 32.5 and standard deviation = 11.78) with work experience of at least 6 months. A descriptive, correlational, and inferential analysis of the quantitative data was undertaken. The results revealed that an average level of CS and BO was reported by 32 (49.2%) and 35 (53.8%) study participants, respectively, while 62 (95.4%) participants reported higher STS on ProQoL scale-Version 5. Significant differences in levels of CS, BO, and STS were found based on additional training taken in palliative care ( P = 0.01), designation type ( P < 0.001), and workplace type ( P = 0.01). The overall results strongly suggest that a short intervention targeting STS and BO can help the study population and further enhance their CS and patient care.

Use of Opioids and Sedatives at End-of-Life

PubMed Central

Sim, Shin Wei; Ho, Shirlynn; Kumar, Radha Krishna Lalit

2014-01-01

Despite their proven efficacy and safety, opioid and sedative use for palliation in patients afflicted with cancer in Singapore have been shown to be a fraction of that in other countries. This paper explores the various psychosocial and system-related factors that appear to propagate this conservative approach to care in what is largely a western-influenced care practice. A search for publications relating to sedative and opioid usage in Asia was performed on PubMed, Google, Google Scholar, World Health Organization, and Singapore's government agency websites using search terms such as “opioids,” “sedatives,” “palliation,” “end-of-life-care,” “pain management,” “palliative care,” “cancer pain,” “Asia,” “Singapore,” and “morphine.” Findings were classified into three broad groups – system-related, physician-related, and patient-related factors. A cautious medico-legal climate, shortage of physicians trained in palliative care, and lack of instruments for symptom assessment of patients at the end of life contribute to system-related barriers. Physician-related barriers include delayed access to palliative care due to late referrals, knowledge deficits in non-palliative medicine physicians, and sub-optimal care provided by palliative physicians. Patients' under-reporting of symptoms and fear of addiction, tolerance, and side effects of opioids and sedatives may lead to conservative opioid use in palliative care as well. System-related, physician-related, and patient-related factors play crucial roles in steering the management of palliative patients. Addressing and increasing the awareness of these factors may help ensure patients receive adequate relief and control of distressing symptoms. PMID:25125876

Palliative sedation in Dutch general practice from 2005 to 2011: a dynamic cohort study of trends and reasons

PubMed Central

Donker, Gé A; Slotman, Frank G; Spreeuwenberg, Peter; Francke, Anneke L

2013-01-01

Background Little is known about the quantity and reasons for use of palliative sedation in general practice. Aim To gain more insight into the trends of and reasons for palliative sedation in Dutch general practice. Design and setting Dynamic cohort study using registrations and questionnaire data of Dutch GPs. Method Data collected in the years from 2005 until 2011 in the Dutch Sentinel General Practice Network were analysed. Trends and reasons for use of palliative sedation were analysed using multilevel analyses to control for clustering of observations within general practices. Results From 2005–2011, 183 cases were reported from 56 general practices. The incidence of palliative sedation fluctuated between 33.7 per 100 000 patients in 2006 and 15.2 in 2011. No rise or decline during the period was observed. Palliative sedation was applied in 5.7% of all deaths and most frequently used in younger patients with cancer. The mean number of refractory symptoms was 2.6 (SD 1.2); pain (69.4%), dyspnoea (53.0%), and fear (39.3%). Patient involvement in decision making before the start of palliative sedation (87.4%) was less frequently present in patients suffering from cardiovascular or chronic obstructive pulmonary disease and in older patients compared to patients with cancer (P<0.05). Pending euthanasia requests were present in 20.8% of cases; the choice for palliative sedation in these cases was clearly motivated. Conclusion Palliative sedation is performed in a small proportion of dying patients in Dutch general practice, without a rise or decline observed from 2005 to 2011. Patients with non-cancer diseases are less frequently involved in decision making than patients with cancer, possibly related to sudden deterioration. PMID:24152481

Palliative sedation in Dutch general practice from 2005 to 2011: a dynamic cohort study of trends and reasons.

PubMed

Donker, Gé A; Slotman, Frank G; Spreeuwenberg, Peter; Francke, Anneke L

2013-10-01

Little is known about the quantity and reasons for use of palliative sedation in general practice. To gain more insight into the trends of and reasons for palliative sedation in Dutch general practice. Dynamic cohort study using registrations and questionnaire data of Dutch GPs. Method Data collected in the years from 2005 until 2011 in the Dutch Sentinel General Practice Network were analysed. Trends and reasons for use of palliative sedation were analysed using multilevel analyses to control for clustering of observations within general practices. From 2005-2011, 183 cases were reported from 56 general practices. The incidence of palliative sedation fluctuated between 33.7 per 100 000 patients in 2006 and 15.2 in 2011. No rise or decline during the period was observed. Palliative sedation was applied in 5.7% of all deaths and most frequently used in younger patients with cancer. The mean number of refractory symptoms was 2.6 (SD 1.2); pain (69.4%), dyspnoea (53.0%), and fear (39.3%). Patient involvement in decision making before the start of palliative sedation (87.4%) was less frequently present in patients suffering from cardiovascular or chronic obstructive pulmonary disease and in older patients compared to patients with cancer (P<0.05). Pending euthanasia requests were present in 20.8% of cases; the choice for palliative sedation in these cases was clearly motivated. Palliative sedation is performed in a small proportion of dying patients in Dutch general practice, without a rise or decline observed from 2005 to 2011. Patients with non-cancer diseases are less frequently involved in decision making than patients with cancer, possibly related to sudden deterioration.

The Quality Improvement Environment: Results of the 2016 AAHPM/HPNA Membership Needs Assessment Survey.

PubMed

Lindley, Lisa C; Rotella, Joseph D; Ast, Katherine; Matzo, Marianne; Kamal, Arif H

2017-11-01

The American Academy of Hospice and Palliative Medicine (AAHPM) and Hospice and Palliative Nurses Association (HPNA) convened the Measuring What Matters (MWM) initiative in 2013, which recommended 10 quality performance measures; yet, little is known about the quality improvement (QI) environment and implementation of the MWM among hospices and palliative care services. The objective of this study was to describe the findings of the 2016 AAHPM/HPNA Needs Assessment survey exploring the QI environment among hospice and palliative care services. An online survey was distributed to approximately 16,500 AAHPM and HPNA members, and other hospice and palliative care organizations were invited to respond. Summary data and individual write-in responses were collated and analyzed. Data analysis included generating descriptive statistics and analyzing individual write-in responses for additional information and themes. More than 1000 responses were received. Most organizations had a designated QI leader and used an electronic medical record. Less than 50% of systems had fields for palliative care information. The top three MWM measures collected through an electronic medical record were pain treatment (66%), screening for physical symptoms (55%), and comprehensive assessment (54%). The most common barrier to implementing QI was time constraint. Most respondents had received no training and education in how to implement QI. The 2016 AAHPM/HPNA Needs Assessment Survey provided important information about the QI systems and measurement environment within hospice and palliative care services. Survey insights can aid AAHPM/HPNA in developing resources to empower hospice and palliative care clinicians to make QIs that matter for their patients and families. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Is early integration of palliative care feasible and acceptable for advanced respiratory and gastrointestinal cancer patients? A phase 2 mixed-methods study.

PubMed

Costantini, Massimo; Apolone, Giovanni; Tanzi, Silvia; Falco, Francesco; Rondini, Ermanno; Guberti, Monica; Fanello, Silvia; Cavuto, Silvio; Savoldi, Luisa; Piro, Roberto; Mecugni, Daniela; Di Leo, Silvia

2018-01-01

There is evidence that early integration of palliative care improves quality of life, lowers spending and helps clarify preferences and goals for advanced cancer patients. Little is known about the feasibility and acceptability of early integration. Assessing feasibility of early integration of palliative care, and exploring concerns perceived and problems encountered by patients, relatives and oncologists. A phase 2 mixed-methods study ( ClinicalTrials.Gov :NCT02078700). Oncologists of two outpatient clinics offered a specialised palliative care intervention integrated with standard oncological care to all consecutive newly diagnosed metastatic respiratory/gastrointestinal cancer patients. We interviewed samples of patients, relatives and oncologists to explore strengths and weaknesses of the intervention. The intervention was proposed to 44/54 eligible patients (81.5%), 40 (90.1%) accepted, 38 (95.0%) attended the first palliative care visit. The intervention was completed for 32 patients (80.0%). It did not start for three (7.5%) and was interrupted for three patients who refused (7.5%). The Palliative Care Unit performed 274 visits in 38 patients (median per patient 4.5), and 24 family meetings with relatives of 16 patients. All patients and most relatives referred to the usefulness of the intervention, specifically for symptoms management, information and support to strategies for coping. Oncologists highlighted their difficulties in informing patients on palliative intervention, sharing information and coordinating patient's care with the palliative care team. Early integration of palliative care in oncological setting seems feasible and well accepted by patients, relatives and, to a lesser extent, oncologists. Some difficulties emerged concerning patient information and inter-professional communication.

Delirium in adult patients receiving palliative care: a systematic review of the literature.

PubMed

Sánchez-Román, Sofía; Beltrán Zavala, Cristina; Lara Solares, Argelia; Chiquete, Erwin

2014-01-01

Delirium in palliative care patients is common and its diagnosis and treatment is a major challenge. Our objective was to perform a literature analysis in two phases on the recent scientific evidence (2007-2012) on the diagnosis and treatment of delirium in adults receiving palliative care. In phase 1 (descriptive studies and narrative reviews) 133 relevant articles were identified: 73 addressed the issue of delirium secondarily, and 60 articles as the main topic. However, only 4 prospective observational studies in which delirium was central were identified. Of 135 articles analysed in phase 2 (clinical trials or descriptive studies on treatment of delirium in palliative care patients), only 3 were about prevention or treatment: 2 retrospective studies and one clinical trial on multicomponent prevention in cancer patients. Much of the recent literature is related to reviews on studies conducted more than a decade ago and on patients different to those receiving palliative care. In conclusion, recent scientific evidence on delirium in palliative care is limited and suboptimal. Prospective studies are urgently needed that focus specifically on this highly vulnerable population. Copyright © 2013 SEP y SEPB. Published by Elsevier España. All rights reserved.

Validation of the "Quality of Life in Life-Threatening Illness--Family Carer Version" (QOLLTI-F) in German-speaking carers of advanced cancer patients.

PubMed

Schur, Sophie; Ebert-Vogel, Alexandra; Amering, Michaela; Masel, Eva Katharina; Neubauer, Marie; Schrott, Andrea; Sibitz, Ingrid; Watzke, Herbert; Schrank, Beate

2014-10-01

Palliative care is a multidisciplinary approach that focuses on the improvement of quality of life (QOL) of patients as well as their families. QOL research in palliative care has so far primarily focused on patients, but interest in the QOL of their relatives is increasing. For instruments measuring QOL in relatives, data on psychometric properties are often limited, and so far, none has been available in German. This study translates and validates the "Quality of Life in Life-Threatening Illness-Family Carer Version" (QOLLTI-F) in German-speaking carers of advanced cancer patients. The QOLLTI-F was translated from English into German according to the World Health Organisation's recommendations and validated in informal caregivers of terminally ill cancer patients of three Viennese hospitals. Hope was measured to assess concurrent validity; traumatic stress, anxiety, depression and subjective burden were measured to assess discriminant validity. Internal consistency, test-retest reliability and discriminative power were established. The scale's factor structure was explored using a set of factor analyses. Of the 308 caregivers participating in the study, 42 completed the QOLLTI-F retest after a mean of 5 days. The internal consistency was α = 0.85 for the overall scale, Pearson correlation between test and retest lay at r = 0.92. As expected, a significant positive correlation was found with hope (r = 0.40) and significant negative correlations with traumatic stress (r = -0.41), depression (r = -0.51), anxiety (r = -0.52) and overall subjective burden (r = -0.55). The original seven-factor structure was not reproduced, but the scale showed a stable four-factor structure with factors capturing (1) feelings about carers' own life, (2) professional care, (3) interaction with the patient and others and (3) carers' outlook on life. This study provides a sound translation and validation of the first QOL assessment tool for caregivers of palliative care patients in German. It also adds to the knowledge on the scale's psychometric properties, which prove to be highly satisfactory. The QOLLTI-F may serve as an outcome measure in palliative care practice, clinical trials and epidemiological research.

Characteristics of the Family Caregivers Who Did Not Benefit From a Successful Psychoeducational Group Intervention During Palliative Cancer Care: A Prospective Correlational Study.

PubMed

Holm, Maja; Årestedt, Kristofer; Carlander, Ida; Wengström, Yvonne; Öhlen, Joakim; Alvariza, Anette

Although there has been a steady increase in intervention studies aimed toward supporting family caregivers in palliative cancer care, they often report modest effect sizes and there is a lack of knowledge about possible barriers to intervention effectiveness. The aim of this study is to explore the characteristics of family caregivers who did not benefit from a successful psychoeducational group intervention compared with the characteristics of those who did. A psychoeducational intervention for family caregivers was delivered at 10 palliative settings in Sweden. Questionnaires were used to collect data at baseline and following the intervention. The Preparedness for Caregiving Scale was the main outcome for the study and was used to decide whether or not the family caregiver had benefited from the intervention (Preparedness for Caregiving Scale difference score ≤ 0 vs ≥ 1). A total of 82 family caregivers completed the intervention and follow-up. Caregivers who did not benefit from the intervention had significantly higher ratings of their preparedness and competence for caregiving and their health at baseline compared with the group who benefited. They also experienced lower levels of environmental burden and a trend toward fewer symptoms of depression. Family caregivers who did not benefit from the intervention tended to be less vulnerable at baseline. Hence, the potential to improve their ratings was smaller than for the group who did benefit. Determining family caregivers in cancer and palliative care who are more likely to benefit from an intervention needs to be explored further in research.

[Palliative care needs in the inmobilized population of a Primary Care area in Vigo Spain].

PubMed

Ferraz-Falcao, J R; Cadaval-Rodríguez, T; Rodríguez-Iglesia, R M; del Campo-Pérez, V M

2015-09-01

To determine palliative care needs in a sample of people with mobility problems in the area of the C.S. Matama by using the NECPAL instrument (identification and integral-integrated care of people with advanced chronic diseases in social and healthcare provision services). Descriptive and cross-sectional study of patients immobilized in a health centre in Vigo (87 subjects overall). The average age of our patients is 84.34 years and 82% are women. The most frequent immobilization type was the patient's inability to leave their home (64%). The result of this test was positive in 38% of cases (33 patients), most of whom have chronic diseases and only 1 patient has been diagnosed with cancer. There is a significant negative association between the score obtained on the Barthel scale and the ratio of positives to the test. Concerning the use of resources there are important differences regarding hospital admissions and PHC depending on the outcome of the test. These differences were statistically significant with regard to PHC and emergency consultations. An immobilized patient is not synonymous with a patient in need of palliative care; the tool used has been proved to be useful to detect this need, which concerns a third of our patients. The results of the questionnaire of need for care palliative (NECPAL) relate well to the basic activities of daily living (Barthel scale score) and to indicators of use of health services. Copyright © 2014 Sociedad Española de Médicos de Atención Primaria (SEMERGEN). Publicado por Elsevier España, S.L.U. All rights reserved.

Time from last chemotherapy to death and its correlation with the end of life care in a referral hospital

PubMed Central

Karim, Syed Mustafa; Zekri, Jamal; Abdelghany, Ehab; Dada, Reyad; Munsoor, Husna; Ahmad, Imran

2015-01-01

Background: A substantial number of cancer patients receive chemotherapy until the end of life (EoL). Various factors have been shown to be associated with receipt of chemotherapy until near death. In this study, we determine our average time from last chemotherapy to death (TLCD) and explore different factors that may be associated with decreased TLCD. Materials and Methods: A retrospective review of medical records of adult cancer patients who received chemotherapy during their illness and died in our hospital between January 2010 and January 2012 was conducted. Chi-square test and t-test were used to examine the correlation between selected factors and use of chemotherapy within 60 days of death. Multivariate analysis was used to test independent significance of factors testing positive in univariate analysis. Kaplan-Meier method was used to perform survival analysis. Results: Of the 115 cancer patients who died in the hospital, 41 (35.6%) had TLCD of 60 days or less. Patients with better performance status and those dying under medical oncology service were more likely to be in this group of patients. Univariate analysis showed that these patients were less likely to have palliative care involvement, were more likely to die of treatment related causes, and more likely to have died in the Intensive Care Unit. Multivariate analysis confirmed lack of palliative care involvement and better performance status as independent factors for TLCD less than 60 days. Survival analyses showed that patients with palliative care involvement and those dying under palliative care service were likely to have significantly longer TLCD. Conclusions: Cancer patients who have no involvement of palliative care team in their management tend to receive chemotherapy near the EoL, have more aggressive EoL care, and have higher risk of dying die from treatment related complications. Palliative care should be involved early in the care of cancer patients. PMID:25810576

Judgements about fellow professionals and the management of patients receiving palliative care in primary care: a qualitative study.

PubMed

Walshe, Catherine; Todd, Chris; Caress, Ann-Louise; Chew-Graham, Carolyn

2008-04-01

Policies emphasise the importance of collaborative working in community palliative care. Collaborations are generally formed through formal and informal referral processes, but little is known about what influences professionals' decisions to refer to such services. To explore the influences on referrals within general and specialist community palliative care services. Qualitative, multiple-case study. Three primary care trusts in the north-west of England. Multiple data collection methods were employed, including documentary analysis, observation of referral team meetings and interviews. This paper primarily reports data from interviews with 47 health professionals, including GPs, district nurses, and specialist palliative care professionals. Judgements -- positive and negative -- about aspects of fellow professionals' performances appeared to influence referral decisions and ongoing collaboration and care. Attributes upon which these judgements were based included professional responsiveness and communication, respect, working and workload management practices, perceived expertise, and notions of elite practice. The effects of such judgements on referral and healthcare practices were altered by professional "game playing" to achieve professionals' desired outcomes. Palliative care policies and protocols need to take account of these complex and subtle influences on referrals and collaboration. In particular, teamwork and partnership are encouraged within palliative care work, but critical judgements indicate that such partnerships may be difficult or fragile. It is likely that such judgemental attitudes and practices affect many aspects of primary care, not just palliative care.

[Personal and dignified death. The role of pastoral care in palliative medicine].

PubMed

Breit-Keßler, Susanne

2016-03-01

Palliative pastoral care is not about "adding days to life, but about "adding life to days". It does not matter whether the dying process is short or long. What matters is to ensure the best possible quality of life until the very end through mindful companionship. Palliative pastoral care is a path towards a personal dying, dying where the person is taken seriously as an individual until the last moment. Palliative care includes medical assistance, careful care, psychosocial support, and counselling that addresses the spiritual needs of the dying. This palliative care includes inpatient and outpatient hospice work and accompanies not only the patients but also their relatives. It must become the standard procedure in end of life care. The palliative pastoral care also take the needs of medical staff into account: Time-consuming care for the dying exceeds the staff's time budget. A sudden death can be perceived as traumatic. In this case palliative pastoral care must perform the tasks of crisis management, crisis intervention and de-escalation. The debriefing of involved staff can prevent the development of burn-out syndrome. In the view of holistic healthcare, health insurance funds should co-finance pastoral care. Society and humanity benefit from addressing the needs of the dying. In an economically dominated environment it is a social responsibility to make dying humane. © Georg Thieme Verlag KG Stuttgart · New York.

Proactive palliative care for patients with COPD (PROLONG): a pragmatic cluster controlled trial

PubMed Central

Duenk, RG; Verhagen, C; Bronkhorst, EM; van Mierlo, PJWB; Broeders, MEAC; Collard, SM; Dekhuijzen, PNR; Vissers, KCP

2017-01-01

Background and aim Patients with advanced chronic obstructive pulmonary disease (COPD) have poor quality of life. The aim of this study was to assess the effects of proactive palliative care on the well-being of these patients. Trial registration This trial is registered with the Netherlands Trial Register, NTR4037. Patients and methods A pragmatic cluster controlled trial (quasi-experimental design) was performed with hospitals as cluster (three intervention and three control) and a pretrial assessment was performed. Hospitals were selected for the intervention group based on the presence of a specialized palliative care team (SPCT). To control for confounders, a pretrial assessment was performed in which hospitals were compared on baseline characteristics. Patients with COPD with poor prognosis were recruited during hospitalization for acute exacerbation. All patients received usual care while patients in the intervention group received additional proactive palliative care in monthly meetings with an SPCT. Our primary outcome was change in quality of life score after 3 months, which was measured using the St George Respiratory Questionnaire (SGRQ). Secondary outcomes were, among others, quality of life at 6, 9 and 12 months; readmissions: survival; and having made advance care planning (ACP) choices. All analyses were performed following the principle of intention to treat. Results During the year 2014, 228 patients (90 intervention and 138 control) were recruited and at 3 months, 163 patients (67 intervention and 96 control) completed the SGRQ. There was no significant difference in change scores of the SGRQ total at 3 months between groups (−0.79 [95% CI, −4.61 to 3.34], p=0.70). However, patients who received proactive palliative care experienced less impact of their COPD (SGRQ impact subscale) at 6 months (−6.22 [−11.73 to −0.71], p=0.04) and had more often made ACP choices (adjusted odds ratio 3.26 [1.49–7.14], p=0.003). Other secondary outcomes were not significantly different. Conclusion Proactive palliative care did not improve the overall quality of life of patients with COPD. However, patients more often made ACP choices which may lead to better quality of care toward the end of life. PMID:29033560

Introducing PALETTE: an iterative method for conducting a literature search for a review in palliative care.

PubMed

Zwakman, Marieke; Verberne, Lisa M; Kars, Marijke C; Hooft, Lotty; van Delden, Johannes J M; Spijker, René

2018-06-02

In the rapidly developing specialty of palliative care, literature reviews have become increasingly important to inform and improve the field. When applying widely used methods for literature reviews developed for intervention studies onto palliative care, challenges are encountered such as the heterogeneity of palliative care in practice (wide range of domains in patient characteristics, stages of illness and stakeholders), the explorative character of review questions, and the poorly defined keywords and concepts. To overcome the challenges and to provide guidance for researchers to conduct a literature search for a review in palliative care, Palliative cAre Literature rEview iTeraTive mEthod (PALLETE), a pragmatic framework, was developed. We assessed PALETTE with a detailed description. PALETTE consists of four phases; developing the review question, building the search strategy, validating the search strategy and performing the search. The framework incorporates different information retrieval techniques: contacting experts, pearl growing, citation tracking and Boolean searching in a transparent way to maximize the retrieval of literature relevant to the topic of interest. The different components and techniques are repeated until no new articles are qualified for inclusion. The phases within PALETTE are interconnected by a recurrent process of validation on 'golden bullets' (articles that undoubtedly should be part of the review), citation tracking and concept terminology reflecting the review question. To give insight in the value of PALETTE, we compared PALETTE with the recommended search method for reviews of intervention studies. By using PALETTE on two palliative care literature reviews, we were able to improve our review questions and search strategies. Moreover, in comparison with the recommended search for intervention reviews, the number of articles needed to be screened was decreased whereas more relevant articles were retrieved. Overall, PALETTE helped us in gaining a thorough understanding of the topic of interest and made us confident that the included studies comprehensively represented the topic. PALETTE is a coherent and transparent pragmatic framework to overcome the challenges of performing a literature review in palliative care. The method enables researchers to improve question development and to maximise both sensitivity and precision in their search process.

Nurses' perceptions of hospice palliative care volunteers.

PubMed

Claxton-Oldfield, Stephen; Hastings, Emily; Claxton-Oldfield, Jane

2008-01-01

A total of 50 nurses (hospital and home care) responded to a survey designed to measure: (1) their attitudes toward, and knowledge of, hospice palliative care volunteers; (2) the types of tasks they felt it was appropriate for volunteers to perform; and (3) how valuable they felt different members of the hospice palliative care team are. In addition, they were asked to respond to some open-ended questions (eg, "Do you feel that it is appropriate for hospice palliative care volunteers to know patient medical information?"). The nurses' responses to the "Attitude/Knowledge" part of the survey revealed that they generally held positive attitudes toward volunteers. The majority of the nurses felt that it was appropriate for volunteers to perform most of the tasks listed, except for hands-on patient care. Nurses rated the value of nurses, family members, doctors, and pharmacists significantly higher than volunteers. Fifty-three percent of the nurses felt that volunteers should know patient medical information, and 77% thought that volunteers should have the opportunity to provide input regarding patient care. Also, 75% of the nurses felt that volunteers made their jobs easier, and 56% felt that volunteers should be included in team meetings. When asked to list the topics covered in a hospice palliative care volunteer training program, 73% of the nurses indicated that they were not sure or did not know what topics were covered, indicating a lack of knowledge regarding volunteer training.

Aromatherapy and massage in palliative care.

PubMed

Wilkinson, Susie

1995-01-02

Aromatherapy and massage have gained wide popularity among nurses in clinical practice in recent years. Many nurses in palliative care settings are using these therapies with the assumption that they improve patients' quality of life, but no research has yet investigated their effectiveness. A study was set up to assess the effects of massage and aromatherapy massage on cancer patients receiving palliative care. Patients received three full body massages over a 3-week period, with or without the essential oil Roman Chamomile. The measurements used were the Rotterdam Symptom Checklist (RSCL) and State-Trait Anxiety Inventory. Post-test scores for all patients improved. These were statistically significant in the aromatherapy group on the RSCL physical symptom subscale, quality of life subscale and state anxiety scale. Responses to the post-therapy questionnaire indicate that patients consider the massage or aromatherapy to be beneficial in reducing anxiety, tension, pain and depression.

Prevalence and Predictors of Burnout Among Hospice and Palliative Care Clinicians in the U.S.

PubMed

Kamal, Arif H; Bull, Janet H; Wolf, Steven P; Swetz, Keith M; Shanafelt, Tait D; Ast, Katherine; Kavalieratos, Dio; Sinclair, Christian T; Abernethy, Amy P

2016-04-01

Many clinical disciplines report high rates of burnout, which lead to low quality of care. Palliative care clinicians routinely manage patients with significant suffering, aiming to improve quality of life. As a major role of palliative care clinicians involves educating patients and caregivers regarding identifying priorities and balancing stress, we wondered how clinician self-management of burnout matches against the emotionally exhaustive nature of the work. We sought to understand the prevalence and predictors of burnout using a discipline-wide survey. We asked American Academy of Hospice and Palliative Medicine clinician members to complete an electronic survey querying demographic factors, job responsibilities, and the Maslach Burnout Inventory. We performed univariate and multivariate regression analyses to identify predictors of high rates of burnout. We received 1357 responses (response rate 30%). Overall, we observed a burnout rate of 62%, with higher rates reported by nonphysician clinicians. Most burnout stemmed from emotional exhaustion, with depersonalization comprising a minor portion. Factors associated with higher rates of burnout include working in smaller organizations, working longer hours, being younger than 50 years, and working weekends. We did not observe different rates between palliative care clinicians and hospice clinicians. Higher rated self-management activities to mitigate burnout include participating in interpersonal relationships and taking vacations. Burnout is a major issue facing the palliative care clinician workforce. Strategies at the discipline-wide and individual levels are needed to sustain the delivery of responsive, available, high-quality palliative care for all patients with serious illness. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

The effects of a palliative care program on antidepressant use and continuing maintenance medications in near end-of-life oncology patients (the HEALED study).

PubMed

Thomas, Hilary; Randolph, Monica; Pruemer, Jane

2015-10-01

The use of antidepressants and maintenance medications for cancer patients in a palliative care setting is controversial. The effectiveness of antidepressants and consequences of discontinuing maintenance medications are unknown in this population. Compare the quality of life of patients taking and not taking antidepressants at entry to a palliative care clinic, and to observe maintenance medication use in this population, along with consequences of stopping them. Prospective, monthly review of medications, quality of life, and hospitalizations were recorded from oncology patients that attended a palliative care clinic. In addition, a retrospective chart review of medications and hospitalizations of oncology patients that did and did not attend a palliative care clinic was performed. Forty-three prospective patients were enrolled. Patients had similar quality of life whether or not they were taking antidepressants (p = 0.52). Number of maintenance medications at entry and at final evaluation did not change (p = 0.45). No hospitalizations were caused by discontinuation of maintenance medications. QOL of patients did not decline after coming to the clinic based on the baseline and second FACT-G questionnaires (p = 0.84). Fifty-six patients were included in the retrospective portion of this study. The non-palliative care patients had higher proportions of maintenance medications and rates of hospitalizations when compared to the palliative care patients. Quality of life is essentially the same between palliative care patients, whether they are receiving antidepressants or not. © The Author(s) 2014.

Incorporating Quality of Life Metrics in Interventional Oncology Practice.

PubMed

Li, David; Madoff, David C

2017-12-01

Interventional radiologists care for a large number of cancer patients with the breadth of palliative intent minimally invasive procedures that we provide. Understanding our meaningful impact on patients' quality of life is essential toward validating our role in the palliation of cancer patients. As such, it is critically important for interventional radiologists to understand common instruments used for the reporting of patient's quality of life measures. Common instruments used to measure pain and quality of life for cancer patients include the numerical rating scale, visual analog scale, brief pain inventory, the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire, and the Functional Assessment of Cancer Therapy. An ideal quality of life instrument should be a patient reported outcome measure across multiple domains (e.g., physical health, psychological, social), and be both validated and reliable.

Spiritual well-being and quality of life among Icelanders receiving palliative care: data from Icelandic pilot-testing of a provisional measure of spiritual well-being from the European Organisation for Research and Treatment of Cancer.

PubMed

Asgeirsdottir, G H; Sigurdardottir, V; Gunnarsdottir, S; Sigurbjörnsson, E; Traustadottir, R; Kelly, E; Young, T; Vivat, B

2017-03-01

Palliative care focuses on improving quality of life (QoL). This study examined the feasibility of the Icelandic version of a provisional European Organisation for Research and Treatment of Cancer (EORTC) measure of spiritual well-being (SWB), and explored the relationship between SWB and QoL for palliative care patients in Iceland. Instruments from the EORTC were used: the provisional measure of SWB, which was undergoing pilot-testing in Iceland, and the EORTC QLQ C15-PAL. The correlation between scores was examined and descriptive statistics were used. Structured interviews explored feasibility. Thirty persons participated with average age 72 years. Belief in God or a higher power had the mean 3.33 on a 1-4 scale and the mean for overall SWB was 5.73 on a 1-7 scale. The mean score for global health/QoL was 59.4, physical functioning 48.5 and emotional functioning 78.9 on a 0-100 scale. Overall QoL was positively correlated with SWB showing r(30) = 0.386, P = 0.035. The participants found that answering the provisional EORTC QLQ-SWB prompted an emotional response and took the opportunity to discuss the subject. The provisional SWB measure was found relevant for the Icelandic context, and the study indicates that SWB and QoL are closely connected. © 2015 John Wiley & Sons Ltd.

Single-port videoscopic splanchnotomy for palliation of refractory chronic pancreatitis.

PubMed

Kuijpers, Michiel; Klinkenberg, Theo J; Bouma, Wobbe; Beese, Ulrich; DeJongste, Mike J; Mariani, Massimo A

2016-04-01

Interrupting the afferent signals that travel through the splanchnic nerves by multiportal thoracoscopic splanchnotomy can offer effective palliation in chronic pancreatitis. However, obtained results weaken after time, possibly necessitating repeat procedures. Given the palliative nature of this procedure, potential for iatrogenic damage should be kept at a minimum. So, in order to minimize invasiveness while optimizing repeatability, we sought to create an easily reproducible single-access port operative strategy. Four patients suffering from intractable pain due to chronic pancreatitis for >10 years (12.8 ± 5.9) underwent a single-port unilateral R5-R11 splanchnotomy. Postoperative recovery was uneventful. No operative complications were observed. All 4 patients experienced excellent pain relief with a significant improvement of Visual Analogue Scale pain scores (8.8 ± 1.0 preoperatively to 3.0 ± 1.2 postoperatively, P = 0.003). We report the first series of single-port video-assisted thoracoscopic surgical (VATS) splanchnotomy for palliation of intractable pain due to chronic pancreatitis. From this small study, single-port VATS splanchnotomy seems to be a safe and effective alternative to multiportal or open procedures. © The Author 2016. Published by Oxford University Press on behalf of the European Association for Cardio-Thoracic Surgery. All rights reserved.

Delirium diagnosis, screening and management

PubMed Central

Lawlor, Peter G.; Bush, Shirley H.

2014-01-01

Purpose of review Our review focuses on recent developments across many settings regarding the diagnosis, screening and management of delirium, so as to inform these aspects in the context of palliative and supportive care. Recent findings Delirium diagnostic criteria have been updated in the long-awaited Diagnostic Statistical Manual of Mental Disorders, fifth edition. Studies suggest that poor recognition of delirium relates to its clinical characteristics, inadequate interprofessional communication and lack of systematic screening. Validation studies are published for cognitive and observational tools to screen for delirium. Formal guidelines for delirium screening and management have been rigorously developed for intensive care, and may serve as a model for other settings. Given that palliative sedation is often required for the management of refractory delirium at the end of life, a version of the Richmond Agitation-Sedation Scale, modified for palliative care, has undergone preliminary validation. Summary Although formal systematic delirium screening with brief but sensitive tools is strongly advocated for patients in palliative and supportive care, it requires critical evaluation in terms of clinical outcomes, including patient comfort. Randomized controlled trials are needed to inform the development of guidelines for the management of delirium in this setting. PMID:25004177

Paediatric Palliative Care in Resource-Poor Countries

PubMed Central

Boucher, Sue; Daniels, Alex; Nkosi, Busi

2018-01-01

There is a great need for paediatric palliative care (PPC) services globally, but access to services is lacking in many parts of the world, particularly in resource-poor settings. Globally it is estimated that 21.6 million children need access to palliative care, with 8.2 needing specialist services. PC has been identified as important within the global health agenda e.g., within universal health coverage, and a recent Lancet commission report recognised the need for PPC. However, a variety of challenges have been identified to PPC development globally such as: access to treatment, access to medications such as oral morphine, opiophobia, a lack of trained health and social care professionals, a lack of PPC policies and a lack of awareness about PPC. These challenges can be overcome utilising a variety of strategies including advocacy and public awareness, education, access to medications, implementation and research. Examples will be discussed impacting on the provision of PPC in resource-poor settings. High-quality PPC service provision can be provided with resource-poor settings, and there is an urgent need to scale up affordable, accessible, and quality PPC services globally to ensure that all children needing palliative care can access it. PMID:29463065

'Peace' and 'life worthwhile' as measures of spiritual well-being in African palliative care: a mixed-methods study.

PubMed

Selman, Lucy; Speck, Peter; Gysels, Marjolein; Agupio, Godfrey; Dinat, Natalya; Downing, Julia; Gwyther, Liz; Mashao, Thandi; Mmoledi, Keletso; Moll, Tony; Sebuyira, Lydia Mpanga; Ikin, Barbara; Higginson, Irene J; Harding, Richard

2013-06-10

Patients with incurable, progressive disease receiving palliative care in sub-Saharan Africa experience high levels of spiritual distress with a detrimental impact on their quality of life. Locally validated measurement tools are needed to identify patients' spiritual needs and evaluate and improve spiritual care, but up to now such tools have been lacking in Africa. The African Palliative Care Association (APCA) African Palliative Outcome Scale (POS) contains two items relating to peace and life worthwhile. We aimed to determine the content and construct validity of these items as measures of spiritual wellbeing in African palliative care populations. The study was conducted at five palliative care services, four in South Africa and one in Uganda. The mixed-methods study design involved: (1) cognitive interviews with 72 patients, analysed thematically to explore the items' content validity, and (2) quantitative data collection (n = 285 patients) using the POS and the Spirit 8 to assess construct validity. (1) Peace was interpreted according to the themes 'perception of self and world', 'relationship to others', 'spiritual beliefs' and 'health and healthcare'. Life worthwhile was interpreted in relation to 'perception of self and world', 'relationship to others' and 'identity'. (2) Conceptual convergence and divergence were also evident in the quantitative data: there was moderate correlation between peace and Spirit 8 spiritual well-being (r = 0.46), but little correlation between life worthwhile and Spirit 8 spiritual well-being (r = 0.18) (both p < 0.001). Correlations with Spirit 8 items were weak to moderate. Findings demonstrate the utility of POS items peace and life worthwhile as distinct but related measures of spiritual well-being in African palliative care. Peace and life worthwhile are brief and simple enough to be integrated into routine practice and can be used to measure this important but neglected outcome in this population.

What Impact Do Chaplains Have? A Pilot Study of Spiritual AIM for Advanced Cancer Patients in Outpatient Palliative Care.

PubMed

Kestenbaum, Allison; Shields, Michele; James, Jennifer; Hocker, Will; Morgan, Stefana; Karve, Shweta; Rabow, Michael W; Dunn, Laura B

2017-11-01

Spiritual care is integral to quality palliative care. Although chaplains are uniquely trained to provide spiritual care, studies evaluating chaplains' work in palliative care are scarce. The goals of this pre-post study, conducted among patients with advanced cancer receiving outpatient palliative care, were to evaluate the feasibility and acceptability of chaplain-delivered spiritual care, utilizing the Spiritual Assessment and Intervention Model ("Spiritual AIM"), and to gather pilot data on Spiritual AIM's effects on spiritual well-being, religious and cancer-specific coping, and physical and psychological symptoms. Patients with advanced cancer (N = 31) who were receiving outpatient palliative care were assigned based on chaplains' and patients' outpatient schedules, to one of three professional chaplains for three individual Spiritual AIM sessions, conducted over the course of approximately six to eight weeks. Patients completed the following measures at baseline and post-intervention: Edmonton Symptom Assessment Scale, Steinhauser Spirituality, Brief RCOPE, Functional Assessment of Chronic Illness Therapy-Spiritual (FACIT-Sp-12), Mini-Mental Adjustment to Cancer (Mini-MAC), Patient Dignity Inventory, Center for Epidemiological Studies-Depression (10 items), and Spielberger State Anxiety Inventory. From baseline to post-Spiritual AIM, significant increases were found on the FACIT-Sp-12 Faith subscale, the Mini-MAC Fighting Spirit subscale, and Mini-MAC Adaptive Coping factor. Two trends were observed, i.e., an increase in Positive religious coping on the Brief RCOPE and an increase in Fatalism (a subscale of the Mini-MAC). Spiritual AIM, a brief chaplain-led intervention, holds potential to address spiritual needs and religious and general coping in patients with serious illnesses. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Validity and reliability of the Palliative Care Transition Measure for Caregivers (PCTM-C).

PubMed

D'Angelo, Daniela; Mastroianni, Chiara; Artico, Marco; Biagioli, Valentina; Latina, Roberto; Guarda, Michela; Piredda, Michela; De Marinis, Maria Grazia

2018-01-21

Patients suffering from advanced disease face different care transitions. The transition from acute to palliative care is challenging and may lead to the discontinuity of care. Family caregivers become important sources of information, as patients begin to experience difficulties in coping with emotional transition events. The Care Transition Measure was developed to evaluate care transitions as experienced by the elderly. It has never been used in palliative care. The aim of this study was to test the validity and reliability of a modified version of the Palliative Care Transition Measure, specifically the Palliative Care Transition Measure for Caregivers (PCTM-C). The study included two main phases. Phase I focused on the construction of a modified version of the Palliative Care Transition Measure through two focus groups and by computing the content validity index. Phase II focused on testing the psychometric properties of the PCTM-C on 272 family caregivers through confirmatory factor analysis. Result The content validity index for each of the items was higher than 0.80, whereas that for the scale was 0.95. The model tested with confirmatory factor analysis fitted the data well and confirmed that the transition measures referred to communication, integrated care and a trusting-relationship, and therefore the core dimensions of continuity according to existing conceptual models. The internal consistency was high (Cronbach's alpha = 0.94). Significance of results The PCTM-C proved to be a suitable measure of the quality of such transitions. It may be used in clinical practice as a continuity quality indicator and has the potential to guide interventions to enhance family caregivers' experience of care continuity.

Palliative Care Physicians' Religious / World View and Attitude Towards Euthanasia: A Quantitative Study Among Flemish Palliative Care Physicians

PubMed Central

Broeckaert, B; Gielen, J; Van Iersel, T; Van den Branden, S

2009-01-01

Aims: To Study the religious and ideological views and practice of Palliative Care physician towards Euthanasia. Materials and Methods: An anonymous self administered questionnaire approved by Flemish Palliative Care Federation and its ethics steering group was sent to all physicians(n-147) working in Flemish Palliative Care. Questionnaire consisted of three parts. In first part responded were requested to provide demographic information. In second part the respondents were asked to provide information concerning their religion or world view through several questions enquiring after religious or ideological affiliation, religious or ideological self-definition, view on life after death, image of God, spirituality, importance of rituals in their life, religious practice, and importance of religion in life. The third part consisted of a list of attitudinal statements regarding different treatment decisions in advanced disease on which the respondents had to give their opinion using a five-point Likert scale.99 physician responded. Results: We were able to distinguish four clusters: Church-going physicians, infrequently church-going physicians, atheists and doubters. We found that like the Belgian general public, many Flemish palliative care physicians concoct their own religious or ideological identity and feel free to drift away from traditional religious and ideological authorities. Conclusions: In our research we noted that physicians who have a strong belief in God and express their faith through participation in prayer and rituals, tend to be more critical toward euthanasia. Physicians who deny the existence of a transcendent power and hardly attend religious services are more likely to approve of euthanasia even in the case of minors or demented patients. In this way this study confirms the influence of religion and world view on attitudes toward euthanasia. PMID:20606855

Palliating inside the lines: The effects of borders and boundaries on palliative care in rural Canada.

PubMed

Giesbrecht, Melissa; Crooks, Valorie A; Castleden, Heather; Schuurman, Nadine; Skinner, Mark; Williams, Allison

2016-11-01

We draw lines to divide our world into specific places, territories, and categories. Although borders and boundaries are dynamic and socially constructed, their existence creates many broad impacts on our lives by geographically distinguishing between groups (e.g., us/them; here/there; inside/outside) at various scales from the national down to the personal spaces of the individual. Particularly, borders and boundaries can be used to define a variety of differing spaces such as the familial, social, economic, political, as well as issues of access - including access to health services. Despite the implicit connection between borders, boundaries, and health, little research has investigated this connection from a health geography perspective. As such, this secondary thematic analysis contributes to addressing this notable gap by examining how borders and boundaries are experienced and perceived to impact access to palliative care in rural Canada from the perspectives of the formal and informal providers of such care. Drawing upon data from qualitative interviews (n = 40) with formal and informal palliative caregivers residing in four different rural Canadian communities, five forms of borders and boundaries were found to directly impact care delivery/receipt: political; jurisdictional; geographical; professional; and cultural. Implicitly and explicitly, participants discussed these borders and boundaries while sharing their experiences of providing palliative care in rural Canada. We conclude by discussing the implications of our findings for palliative care in rural Canada, while also emphasizing the need for more health geography, and related social science, researchers to recognize the significance of borders and boundaries in relation to health and healthcare delivery. Lastly, we emphasize the transferability of these findings to other health sectors, geographical settings, and disciplines. Copyright © 2016 Elsevier Ltd. All rights reserved.

Professional Quality of Life among Professional Care Providers at Cancer Palliative Care Centers in Bengaluru, India

PubMed Central

Kaur, Amanpreet; Sharma, Mahendra P; Chaturvedi, Santosh K

2018-01-01

Context: Being a professional care provider at cancer palliative care settings is demanding and stressful. Literature has indicated the prevalence of high burnout (BO) and distress; however, there is a dearth of studies in India, with no study available on professional quality of life in the field of palliative care. Aims: The aim of the present study was to explore the professional quality of life, namely-compassion satisfaction [CS], burnout [BO], and secondary traumatic stress [STS] among professional care providers at cancer palliative care centers. Settings and Design: A cross-sectional, descriptive, and quantitative study was carried out at four cancer palliative care centers in Bengaluru after the permissions and ethical approvals. Subjects and Methods: The tools used were brief sociodemographic datasheet and professional quality of life (ProQoL)-Version 5 administered with 65 participants (mean age = 32.5 and standard deviation = 11.78) with work experience of at least 6 months. Analysis: A descriptive, correlational, and inferential analysis of the quantitative data was undertaken. Results: The results revealed that an average level of CS and BO was reported by 32 (49.2%) and 35 (53.8%) study participants, respectively, while 62 (95.4%) participants reported higher STS on ProQoL scale-Version 5. Significant differences in levels of CS, BO, and STS were found based on additional training taken in palliative care (P = 0.01), designation type (P < 0.001), and workplace type (P = 0.01). Conclusion: The overall results strongly suggest that a short intervention targeting STS and BO can help the study population and further enhance their CS and patient care. PMID:29736119

Judgements about fellow professionals and the management of patients receiving palliative care in primary care: a qualitative study

PubMed Central

Walshe, Catherine; Todd, Chris; Caress, Ann-Louise; Chew-Graham, Carolyn

2008-01-01

Background Policies emphasise the importance of collaborative working in community palliative care. Collaborations are generally formed through formal and informal referral processes, but little is known about what influences professionals' decisions to refer to such services. Aim To explore the influences on referrals within general and specialist community palliative care services. Design of study Qualitative, multiple-case study. Setting Three primary care trusts in the north-west of England. Method Multiple data collection methods were employed, including documentary analysis, observation of referral team meetings and interviews. This paper primarily reports data from interviews with 47 health professionals, including GPs, district nurses, and specialist palliative care professionals. Results Judgements — positive and negative — about aspects of fellow professionals' performances appeared to influence referral decisions and ongoing collaboration and care. Attributes upon which these judgements were based included professional responsiveness and communication, respect, working and workload management practices, perceived expertise, and notions of elite practice. The effects of such judgements on referral and healthcare practices were altered by professional ‘game playing’ to achieve professionals' desired outcomes. Conclusion Palliative care policies and protocols need to take account of these complex and subtle influences on referrals and collaboration. In particular, teamwork and partnership are encouraged within palliative care work, but critical judgements indicate that such partnerships may be difficult or fragile. It is likely that such judgemental attitudes and practices affect many aspects of primary care, not just palliative care. PMID:18494176

Determinants of the administration of continuous palliative sedation: a systematic review.

PubMed

van Deijck, Rogier H P D; Hasselaar, Jeroen G J; Verhagen, Stans C A H H V M; Vissers, Kris C P; Koopmans, Raymond T C M

2013-12-01

Little is known about the determining factors related to the administration of continuous palliative sedation. Knowledge of these determinants may assist physicians in identifying patients who are at high risk of developing refractory symptoms, enable physicians to inform patients, and optimize close monitoring. The aim of this systematic review was to identify determinants of the administration of continuous palliative sedation. A systematic review of PubMed, EMBASE, and CINAHL was performed to identify English, Dutch, and German language papers published from January 1990 through April 2011. Inclusion was based on the following criteria: patient-based research on continuous palliative sedation, studies investigating determinants of palliative sedation and/or comparison between sedated and nonsedated cohorts, and studies using multivariate analyses and of fair to good or good methodological quality. In total, eight papers were reviewed. The following nine factors were found to be associated with the administration of continuous palliative sedation: younger age, male sex, having cancer, feelings of hopelessness, dying in a hospital, living in a Dutch speaking community setting, very nonreligious or extremely nonreligious physicians, physicians working in "other hospital" specialties, and physicians in favor of assisted death. Given the variation in study designs and the limitations of the included studies, the outcomes should be interpreted carefully. Further research is needed, particularly regarding factors that can be influenced and that may alter the course of a patient's symptoms and the patient's eventual need for palliative sedation.

The role and timing of palliative medicine consultation for women with gynecologic malignancies: association with end of life interventions and direct hospital costs.

PubMed

Nevadunsky, Nicole S; Gordon, Sharon; Spoozak, Lori; Van Arsdale, Anne; Hou, Yijuan; Klobocista, Merieme; Eti, Serife; Rapkin, Bruce; Goldberg, Gary L

2014-01-01

Aggressive care interventions at the end of life (ACE) are reported metrics of sub-optimal quality of end of life care that are modifiable by palliative medicine consultation. Our objective was to evaluate the association of inpatient palliative medicine consultation with ACE scores and direct inpatient hospital costs of patients with gynecologic malignancies. A retrospective review of medical records of the past 100 consecutive patients who died from their primary gynecologic malignancies at a single institution was performed. Timely palliative medicine consultation was defined as exposure to inpatient consultation ≥ 30 days before death. Metrics utilized to tabulate ACE scores were ICU admission, hospital admission, emergency room visit, death in an acute care setting, chemotherapy at the end of life, and hospice admission <3 days. Inpatient direct hospital costs were calculated for the last 30 days of life from accounting records. Data were analyzed using Fisher's Exact, Mann-Whitney U, Kaplan-Meier, and Student's T testing. 49% of patients had a palliative medicine consultation and 18% had timely consultation. Median ACE score for patients with timely palliative medicine consultation was 0 (range 0-3) versus 2 (range 0-6) p=0.025 for patients with untimely/no consultation. Median inpatient direct costs for the last 30 days of life were lower for patients with timely consultation, $0 (range 0-28,019) versus untimely, $7729 (0-52,720), p=0.01. Timely palliative medicine consultation was associated with lower ACE scores and direct hospital costs. Prospective evaluation is needed to validate the impact of palliative medicine consultation on quality of life and healthcare costs. © 2013. Published by Elsevier Inc. All rights reserved.

Responses to assisted suicide requests: an interview study with Swiss palliative care physicians.

PubMed

Gamondi, Claudia; Borasio, Gian Domenico; Oliver, Pam; Preston, Nancy; Payne, Sheila

2017-08-11

Assisted suicide in Switzerland is mainly performed by right-to-die societies. Medical involvement is limited to the prescription of the drug and certification of eligibility. Palliative care has traditionally been perceived as generally opposed to assisted suicide, but little is known about palliative care physicians' involvement in assisted suicide practices. This paper aims to describe their perspectives and involvement in assisted suicide practices. A qualitative interview study was conducted with 23 palliative care physicians across Switzerland. Thematic analysis was used to interpret data. Swiss palliative care physicians regularly receive assisted suicide requests while none reported having received specific training in managing these requests. Participants reported being involved in assisted suicide decision making most were not willing to prescribe the lethal drug. After advising patients of the limits on their involvement in assisted suicide, the majority explored the origins of the patient's request and offered alternatives. Many participants struggled to reconcile their understanding of palliative care principles with patients' wishes to exercise their autonomy. The majority of participants had no direct contact with right-to-die societies, many desired better collaboration. A desire was voiced for a more structured debate on assisted suicide availability in hospitals and clearer legal and institutional frameworks. The Swiss model of assisted suicide gives palliative care physicians opportunities to develop roles which are compatible with each practitioner's values, but may not correspond to patients' expectations. Specific education for all palliative care professionals and more structured ways to manage communication about assisted suicide are warranted. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

Addressing Palliative Sedation during Expert Consultation: A Descriptive Analysis of the Practice of Dutch Palliative Care Consultation Teams.

PubMed

Hoek, Patrick; Grandjean, Ilse; Verhagen, Constans A H H V M; Jansen-Landheer, Marlies L E A; Schers, Henk J; Galesloot, Cilia; Vissers, Kris C P; Engels, Yvonne; Hasselaar, Jeroen G J

2015-01-01

Since palliative sedation is considered a complex intervention, consultation teams are increasingly established to support general practice. This study aims to offer insight into the frequency and characteristics of expert consultations regarding palliative sedation. We performed a retrospective analysis of a longitudinal database. This database contained all patient-related consultations by Dutch Palliative Care Consultation teams, that were requested between 2004 and 2011. We described the frequency and characteristics of these consultations, in particular of the subgroup of consultations in which palliative sedation was addressed (i.e. PSa consultations). We used multivariate regression analysis to explore consultation characteristics associated with a higher likelihood of PSa consultations. Of the 44,443 initial consultations, most were requested by general practitioners (73%) and most concerned patients with cancer (86%). Palliative sedation was addressed in 18.1% of all consultations. Palliative sedation was relatively more often discussed during consultations for patients with a neurologic disease (OR 1.79; 95% CI: 1.51-2.12) or COPD (OR 1.39; 95% CI: 1.15-1.69) than for patients with cancer. We observed a higher likelihood of PSa consultations if the following topics were also addressed during consultation: dyspnoea (OR 1.30; 95% CI: 1.22-1.40), agitation/delirium (OR 1.57; 95% CI: 1.47-1.68), exhaustion (OR 2.89; 95% CI: 2.61-3.20), euthanasia-related questions (OR 2.65; 95% CI: 2.37-2.96) or existential issues (OR 1.55; 95% CI: 1.31-1.83). In conclusion, PSa consultations accounted for almost one-fifth of all expert consultations and were associated with several case-related characteristics. These characteristics may help clinicians in identifying patients at risk for a more complex disease trajectory at the end of life.

Psychometric Characteristics of the Hebrew Version of the Professional Quality-of-Life Scale.

PubMed

Samson, Tali; Iecovich, Esther; Shvartzman, Pesach

2016-10-01

Exposure to human suffering may have ramifications for the professional quality of life (ProQol) of palliative care teams. The ProQol scale was designed to assess both negative and positive work-related outcomes and has been used recently for the evaluation of work-related outcomes among palliative care workers. However, the assessment of ProQol among Israeli hospice workers is scant. The aim of this study was to assess the psychometric properties and the factor structure of the Hebrew version of the 30-item ProQol questionnaire. The study population included 1100 health care providers including physicians, nurses, and social workers in primary health care and palliative care settings. A total of 380 workers participated in the study, representing a response rate of 34.5%. The confirmatory factor analysis did not show an adequate "goodness to fit." Using a factor coefficient of 0.35 or greater for inclusion, the exploratory factor analysis revealed a 23-item solution, loaded onto three factors: compassion satisfaction, secondary traumatic stress, and burnout (BU). The internal consistency subscales were 0.87, 0.82, and 0.69, respectively. The subscales showed good convergent and exploratory validity because of significant correlations with measures that examine BU, work engagement, and peritraumatic dissociative experiences. Although the findings are consistent with those from studies in other languages, they are different from the original 30-item three-factor structure reported by Stamm. The Hebrew version of the compassion satisfaction subscale was found to be reliable and valid for studies among health care professionals, but further research is needed to improve the BU and secondary traumatic stress subscales. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

[Nursing in palliative care to children and adolescents with cancer: integrative literature review].

PubMed

da Costa, Thailly Faria; Ceolim, Maria Filomena

2010-12-01

Pediatric palliative care is a challenge for nursing because it requires emotional balance and knowledge about its specific features. This study is an integrative literature review that aims to identify nursing actions in palliative care for children and adolescents with cancer, considering peculiarities of the disease and dying process. The review was performed by searching for articles indexed in Biblioteca Virtual da Adolescência (Adolec), Cumulative Index to Nursing and Allied Health Literature (CINAHL), Literatura Latino-Americana e do Caribe em Ciências da Saúde (LILACS) and PubMed databases from January 2004 till May 2009. From 29 references found, six met inclusion criteria. Results show teamwork, home care, pain management, dialogue, family support and particularities of childhood cancer fundamental tools for nursing in palliative care. The complexity of care in this situation requires solidarity, compassion, support and relieving suffering.

Prognostic factors in patients with malignant pleural effusion: Is it possible to predict mortality in patients with good performance status?

PubMed

Abrao, Fernando Conrado; Peixoto, Renata D'Alpino; de Abreu, Igor Renato Louro Bruno; Janini, Maria Cláudia; Viana, Geisa Garcia; de Oliveira, Mariana Campello; Younes, Riad Naim

2016-04-01

The aim of this study was to identify predictors of mortality only in patients with malignant pleural effusion (MPE) showing good performance status which required pleural palliative procedures. All patients with MPE submitted to pleural palliative procedure were enrolled in a prospective study between 2013 and 2014. Patients with Eastern cooperative oncology group (ECOG) score zero, one, and two were considered with good performance status. The possible prognostic factors were tested for significance using the log-rank test (Kaplan-Meier method) and those with significance on univariate analysis were entered into a multivariable Cox model. A total of 64 patients were included in the analysis. Median follow-up time for surviving patients was 263 days. Median survival for the entire cohort was not reached yet. In the multivariate analysis, gastrointestinal primary site (P = 0.006), low albumin concentration in the pleural fluid (P = 0.017), and high serum NLR (P = 0.007) were associated with mortality. In our cohort of ECOG 0-2 patients with MPE submitted to pleural palliative procedures, gastrointestinal malignancy compared to other sites, low pleural fluid albumin and high NLR were significantly associated with mortality. The identification of these prognostic factors may assist the choice of the optimal palliative technique. J. Surg. Oncol. 2016;113:570-574. © 2016 Wiley Periodicals, Inc. © 2016 Wiley Periodicals, Inc.

Poverty Reduction in India through Palliative Care: A Pilot Project.

PubMed

Ratcliff, Cathy; Thyle, Ann; Duomai, Savita; Manak, Manju

2017-01-01

EMMS International and Emmanuel Hospital Association (EHA) implemented a pilot project, poverty reduction in India through palliative care (PRIPCare). A total of 129 interviews with patients and family enrolled in palliative care at three EHA hospitals (in Fatehpur, Lalitpur and Utraula) and staff discussions established that 66% of palliative care patients had lost livelihoods due to illness, 26% of patients' families had members who had lost livelihoods due to the illness, 98% of enrolled households had debts, 59% had loans for which they had sold assets, 69% of households took out debt after their family member fell ill, many patients do not know about government benefits and lack necessary documents, many village headmen require bribes to give people access to benefits, and many bereaved women and children lose everything. Palliative care enabled 85% of patients and families to spend less on medicines, 31% of patients received free medicines, all patients reduced use of out-patient departments (OPDs), 20% reduced use of inpatient departments (IPDs), and therefore spent less on travel, 8% of patients had started earning again due to improved health, members of 10% of families started earning again, and one hospital educated 171 village headmen and increased by 5% the number of patients and their families receiving government benefits. If only 0.7% of needy adults are receiving palliative care, these benefits could be delivered to 143 times more families, targeted effectively at poverty reduction. Palliative care has great scope to reduce that most desperate poverty in India caused by chronic illness. This article concerns a study by the UK NGO EMMS International and Indian NGO EHA, to assess whether palliative care reduces household poverty. EHA staff had noticed that many patients spend a lot on ineffective treatment before joining palliative care, many families do not know their entitlement to government healthcare subsidies or government pensions, and many bereaved widows and children are disinherited. Convinced that palliative care can address these, EMMS and EHA implemented PRIPCare - a pilot project. EHA began training staff for rural palliative care in north India in 2009, and started its first palliative care service at Harriet Benson Memorial Hospital, Lalitpur, Uttar Pradesh, in 2010, with home-based care backed by hospital out- and in-patient care. With EMMS support since 2012, EHA's palliative care service functions in eight hospitals in six states and Delhi. EMMS International provided the concept, commissioned the study and reviewed the report. EHA hired and guided a consultant, who piloted a questionnaire in EHA's Delhi Shalom Centre, and conducted 129 in-depth, one-to-one interviews in July and August 2015 with patients or close family members enrolled in the palliative care of three EHA rural hospitals, in Fatehpur, Lalitpur and Utraula. This represents 83% of patients in these hospitals, which in July 2015 was 79 patients in Lalitpur, 39 in Utraula, and 38 in Fatehpur. The questionnaire concerned illness, cost of treatment, use of government benefits, and family economic status. The consultant held focus group discussions with palliative care staff in these three hospitals. An intern in EHA's Shalom Centre in Delhi entered data into Excel. The consultant analysed it using Excel. Poverty of palliative care patients 18% of households enrolled for palliative care earn

Poverty Reduction in India through Palliative Care: A Pilot Project

PubMed Central

Ratcliff, Cathy; Thyle, Ann; Duomai, Savita; Manak, Manju

2017-01-01

Introduction: EMMS International and Emmanuel Hospital Association (EHA) implemented a pilot project, poverty reduction in India through palliative care (PRIPCare). A total of 129 interviews with patients and family enrolled in palliative care at three EHA hospitals (in Fatehpur, Lalitpur and Utraula) and staff discussions established that 66% of palliative care patients had lost livelihoods due to illness, 26% of patients' families had members who had lost livelihoods due to the illness, 98% of enrolled households had debts, 59% had loans for which they had sold assets, 69% of households took out debt after their family member fell ill, many patients do not know about government benefits and lack necessary documents, many village headmen require bribes to give people access to benefits, and many bereaved women and children lose everything. Palliative care enabled 85% of patients and families to spend less on medicines, 31% of patients received free medicines, all patients reduced use of out-patient departments (OPDs), 20% reduced use of inpatient departments (IPDs), and therefore spent less on travel, 8% of patients had started earning again due to improved health, members of 10% of families started earning again, and one hospital educated 171 village headmen and increased by 5% the number of patients and their families receiving government benefits. If only 0.7% of needy adults are receiving palliative care, these benefits could be delivered to 143 times more families, targeted effectively at poverty reduction. Palliative care has great scope to reduce that most desperate poverty in India caused by chronic illness. Context: This article concerns a study by the UK NGO EMMS International and Indian NGO EHA, to assess whether palliative care reduces household poverty. Aims: EHA staff had noticed that many patients spend a lot on ineffective treatment before joining palliative care, many families do not know their entitlement to government healthcare subsidies or government pensions, and many bereaved widows and children are disinherited. Convinced that palliative care can address these, EMMS and EHA implemented PRIPCare – a pilot project. Settings and Design: EHA began training staff for rural palliative care in north India in 2009, and started its first palliative care service at Harriet Benson Memorial Hospital, Lalitpur, Uttar Pradesh, in 2010, with home-based care backed by hospital out- and in-patient care. With EMMS support since 2012, EHA's palliative care service functions in eight hospitals in six states and Delhi. Subjects and Methods: EMMS International provided the concept, commissioned the study and reviewed the report. EHA hired and guided a consultant, who piloted a questionnaire in EHA's Delhi Shalom Centre, and conducted 129 in-depth, one-to-one interviews in July and August 2015 with patients or close family members enrolled in the palliative care of three EHA rural hospitals, in Fatehpur, Lalitpur and Utraula. This represents 83% of patients in these hospitals, which in July 2015 was 79 patients in Lalitpur, 39 in Utraula, and 38 in Fatehpur. The questionnaire concerned illness, cost of treatment, use of government benefits, and family economic status. The consultant held focus group discussions with palliative care staff in these three hospitals. Statistical Analysis: An intern in EHA's Shalom Centre in Delhi entered data into Excel. The consultant analysed it using Excel. Results: Poverty of palliative care patients 18% of households enrolled for palliative care earn

Advancing palliative care in the Uganda health system: an evidence-based policy brief.

PubMed

Nabudere, Harriet; Obuku, Ekwaro; Lamorde, Mohammed

2014-12-01

This paper describes the development and findings for a policy brief on "Advancing the Integration of Palliative Care into the National Health System" and the subsequent use of this report. Key stakeholders involved with palliative care helped identify the problem and potential policy solutions to scale up these services within the health system. A working group of national stakeholder representatives and external reviewers commented on and contributed to successive drafts of the report. Research describing the problem, policy options and implementation considerations was identified by reviewing government documents, routinely collected data, electronic literature searches, contact with key informants, and reviewing the reference lists of relevant documents that were retrieved. The palliative burden is not only high but increasing due to the rise in population and life expectancy. A few options for holistic, supportive care include: Home-based care increases chances of a peaceful death for the terminally ill surrounded by their loved ones; supporting informal caregivers improves their quality of life and discharge planning reduces unscheduled admissions and has the potential to free up capacity for acute care services. A combination of strategies is needed to effectively implement the proposed options as discussed further in this article. The policy brief report was used as a background document for two stakeholder dialogues whose main outcome was that a comprehensive national palliative care policy should be instituted to include all the options, which need to be integrated within the public health system. A draft policy is now in process.

Function of local networks in palliative care: a Dutch view.

PubMed

Nikbakht-Van de Sande, C V M Vahedi; van der Rijt, C C D; Visser, A Ph; ten Voorde, M A; Pruyn, J F A

2005-08-01

Although network formation is considered an effective method of stimulating the integrated delivery of palliative care, scientific evidence on the usefulness of network formation is scarce. In 1998 the Ministry of Health of The Netherlands started a 5-year stimulation program on palliative care by founding and funding six regional Centres for the Development of Palliative Care. These centers were structured around pivotal organizations such as university hospitals and comprehensive cancer centers. As part of the stimulation program a locoregional network model was introduced within each center for the Development of Palliative Care to integrate palliative care services in the Dutch health care system. We performed a study on network formation in the southwestern area of The Netherlands with 2.4 million inhabitants. The study aimed to answer the following questions: (1) how do networks in palliative care develop, which care providers participate and how do they function? (2) which are the achievements of the palliative care networks as perceived by their participants? (3) which are the success factors of the palliative care networks according to their participants and which factors predict the achievements? Between September 2000 and January 2004 eight local palliative care networks in the region of the Center for Development of Palliative Care-Rotterdam (southwestern area of The Netherlands) were closely followed to gain information on their characteristics and developmental course. At the start of the study semistructured interviews were held with the coordinators of the eight networks. The information from these interviews and from the network documents were used to constitute a questionnaire to assess the opinions and experiences of the network participants. According to the vast majority of responders, the most important reason to install the networks was the lack of integration between the existing local health care services. The networks were initiated to stimulate mutual collaboration, improve accessibility to health care services and increase the quality of these services. The most important achievements obtained by the palliative care networks were: increase in personal contacts between colleagues in a region, improved engagement and collaboration between participating organizations, enhanced insight in the health care provisions, joined initiatives for the development of new care products, and organization of patient-tailored care. Important success factors for the networks were deemed: fruitful mutual contacts, regular funding and the collective development of care products. By logistic regression analyses, the collective development of new care products and the organization of case discussions between caregivers from different health care services turned out to be the most important predictors for success of the palliative care networks. Projects that stimulate the communication between professionals appear to improve the mutual collaboration between individual participants and between the participating organizations, which consequently enhances the quality of palliative care.

Public, patient and carers' views on palliative and end-of-life care in India.

PubMed

Ramasamy Venkatasalu, M; Sirala Jagadeesh, N; Elavally, S; Pappas, Y; Mhlanga, F; Pallipalayam Varatharajan, R

2018-06-01

To systematically review the existing evidence on the Indian public, patient and carers' perspectives on palliative and end-of-life care. With a growing population of terminally ill people across the world, there is also an increasing awareness among international health policy makers of the need to improve the quality of life for terminally ill patients. Understanding service users' (patients, family and public) perspectives is crucial in developing and sustaining successful community-centred palliative nursing policies and service models especially in countries like India with diverse population. An integrative review was performed on five databases, using hand searches of key journals and reference citation tracking for empirical studies published in English from 1990 to 2015. A thematic analysis framework was used to analyse and identify key themes. Analysis of the six eligible studies revealed five themes. Themes describe how social, economic, cultural, religious, spiritual and traditional factors influenced the palliative and end-of-life care perspectives and experiences among Indians. They also illustrated preferences relating to place of care, as well as benefits and challenges of family caregiving during the last days of life. Although we found minimal evidence on user perspectives, nurses need to aware of those unique components of context-specific palliative and end-of-life care practices in India - socioeconomic, cultural and religious factors - on their nursing encounters. Nurses need to advocate same in policy development to enable accessibility and utility of palliative and end-of-life care services, which are scant in India. Nurses can be central in gathering the contextual evidence that advocate users' perspectives to inform further studies and national palliative care policies in India. Emerging policies in nursing education need to focus on integrating family-centred palliative and end-of-life care within curricula, whereas nursing practice may promote nurse-led community models to address the patchy palliative and end-of-life service provision in India. © 2017 International Council of Nurses.

[Use of the film Keep on the open road in palliative care education of undergraduate medical students : Proof-of-concept study].

PubMed

Dietz, I; Gerbershagen, K; Mielke, A; Pattberg, S; Pesch, E; Poels, M; Schmalz, O; Joppich, R

2012-09-01

Recently palliative care has become an integral and compulsory part of undergraduate medical training in Germany. From 2014 onwards every German medical faculty must have developed and implemented undergraduate teaching in this cross-disciplinary medical field and to conduct examinations. At Witten/Herdecke University (Germany) this new cross-sectional course in palliative care was taught for the first time in 2011. The film "Keep on the open road" was incorporated and the use of this film as part of compulsory palliative care education was evaluated from the student perspective. In two teaching units (1.5 h each) the film was watched with the students and discussed in the context of the palliative care setting with a special focus on psychosocial aspects. A semi-quantitative evaluation was performed after the debriefing. A total of 23 students participated in the course, 87 % (n = 20) evaluated the use of the film as unrestricted useful and 14 indicated a benefit from the film in terms of their medical attitude. Most of the students (n = 19, 83%) did not consider bed-side teaching to be more useful than the film unit. The free text answers underlined that primarily the multidisciplinary aspects of a palliative treatment situation and the meaning of a social environment were highlighted by the film. According to the evaluation of the students and the judgement of the participating teachers the use of the film is a suitable method to clarify complex medical, social and psychological aspects in palliative care. Especially at faculties with much larger numbers of students the film unit is thought to be a helpful method to teach psychosocial aspects and to promote development of attitude in palliative care. In future semesters further experience with the unit and the use of films in palliative care teaching will be collected.

Pharmacovigilance in Hospice/Palliative Care: Net Effect of Haloperidol for Nausea or Vomiting.

PubMed

Digges, Madeline; Hussein, Akram; Wilcock, Andrew; Crawford, Gregory B; Boland, Jason W; Agar, Meera R; Sinnarajah, Aynharan; Currow, David C; Johnson, Miriam J

2018-01-01

Haloperidol is widely prescribed as an antiemetic in patients receiving palliative care, but there is limited evidence to support and refine its use. To explore the immediate and short-term net clinical effects of haloperidol when treating nausea and/or vomiting in palliative care patients. A prospective, multicenter, consecutive case series. Twenty-two sites, five countries: consultative, ambulatory, and inpatient services. When haloperidol was started in routine care as an antiemetic, data were collected at three time points: baseline; 48 hours (benefits); day seven (harms). Clinical effects were assessed using the National Cancer Institute's Common Terminology Criteria for Adverse Events (NCI CTCAE). Data were collected (May 2014-March 2016) from 150 patients: 61% male; 86% with cancer; mean age 72 (standard deviation 11) years and median Australian-modified Karnofsky Performance Scale 50 (range 10-90). At baseline, nausea was moderate (88; 62%) or severe (11; 8%); 145 patients reported vomiting, with a baseline NCI CTCAE vomiting score of 1.0. The median (range) dose of haloperidol was 1.5 mg/24 hours (0.5-5 mg/24 hours) given orally or parenterally. Five patients (3%) died before further data collection. At 48 hours, 114 patients (79%) had complete resolution of their nausea and vomiting, with greater benefit seen in the resolution of nausea than vomiting. At day seven, 37 (26%) patients had a total of 62 mild/moderate harms including constipation 25 (40%); dry mouth 13 (21%); and somnolence 12 (19%). Haloperidol as an antiemetic provided rapid net clinical benefit with low-grade, short-term harms.

Factors influencing the quality of life of patients with advanced cancer.

PubMed

Park, Sun-A; Chung, Seung Hyun; Lee, Youngjin

2017-02-01

The present study aimed to determine the predictors of quality of life (QOL) of patients with advanced cancer. A cross-sectional study involving 494 patients with advanced cancer was conducted using the Memorial Symptom Assessment Scale-Short Form, the Karnofsky Performance Status Scale, the World Health Organization Disability Assessment Schedule (Korean version), and the European Organization for Research and Treatment of Cancer Quality of Life Core 30. Regression analyses showed that physical and psychological symptoms significantly predicted the patients' QOL and explained 28.8% of the variance in QOL. Moreover, lack of energy was the patients' most prevalent symptom. The results of the present study will serve as fundamental data upon which the development of an intervention will be based so as to enhance the patients' QOL. Accordingly, an effective management of symptoms and performance maintenance should be considered in the future as key factors in providing support and establishing palliative care systems for patients with advanced cancer. Copyright © 2016. Published by Elsevier Inc.

Peer mentoring supports the learning needs of nurses providing palliative care in a rural acute care setting.

PubMed

Rabbetts, Lyn

2017-06-02

A specific set of assessment scales can underpin the management of distressing symptoms of patients requiring palliative care. A research assistant supported nurses working in a rural hospital setting during the introduction of these scales. A secondary analysis was conducted to further explore the qualitative data of a previously reported mixed-method study. In particular, the experiences of nurses working alongside a research assistant in the facilitation of using a new assessment form. Purposeful sampling was employed: participating nurses were invited to attend one of three focus group meetings. Data analysis revealed three main themes: a contact person, coach/mentor and extra help initiatives. Three to four subthemes corresponded with each main theme. Findings suggest nurses benefit from having someone to assist in learning about new documentation. Nurses respond positively to mentorship and practical guidance when integrating a new assessment form into routine evidence-based practice.

Compared to Palliative Care, Working in Intensive Care More than Doubles the Chances of Burnout: Results from a Nationwide Comparative Study

PubMed Central

Teixeira, Carla Margarida; Carvalho, Ana Sofia; Hernández-Marrero, Pablo

2016-01-01

Introduction Professionals working in intensive and palliative care units, hence caring for patients at the end-of-life, are at risk of developing burnout. Workplace conditions are determinant factors to develop this syndrome among professionals providing end-of-life care. Objectives To identify and compare burnout levels between professionals working in intensive and palliative care units; and to assess which workplace experiences are associated with burnout. Methods A nationwide, multicentre quantitative comparative survey study was conducted in Portugal using the following instruments: Maslach Burnout Inventory–Human Services Survey, Questionnaire of workplace experiences and ethical decisions, and Questionnaire of socio-demographic and professional characteristics. A total of 355 professionals from 10 intensive care and 9 palliative care units participated in the survey. A series of univariate and multivariate logistic regression analyses were performed; odds ratio sidelong with 95% confidence intervals were calculated. Results 27% of the professionals exhibited burnout. This was more frequent in intensive care units (OR = 2.525, 95% CI: 1.025–6.221, p = .006). Univariate regression analyses showed that higher burnout levels were significantly associated with conflicts, decisions to withhold/withdraw treatment, and implementing palliative sedation. When controlling for socio-demographic and educational characteristics, and setting (intensive care units versus palliative care units), higher burnout levels were significantly and positively associated with experiencing conflicts in the workplace. Having post-graduate education in intensive/palliative care was significantly but inversely associated to higher burnout levels. Conclusions Compared to palliative care, working in intensive care units more than doubled the likelihood of exhibiting burnout. Experiencing conflicts (e.g., with patients and/or families, intra and/or inter-teams) was the most significant determinant of burnout and having post-graduate education in intensive/palliative care protected professionals from developing this syndrome. This highlights the need for promoting empowering workplace conditions, such as team empowerment and conflict management. Moreover, findings suggest the need for implementing quality improvement strategies and organizational redesign strategies aimed at integrating the philosophy, principles and practices of palliative care in intensive care units. PMID:27612293

American College of Surgeons National Surgical Quality Improvement Program as a quality-measurement tool for advanced cancer patients.

PubMed

Vidri, Roberto J; Blakely, Andrew M; Kulkarni, Shreyus S; Vaghjiani, Raj G; Heffernan, Daithi S; Harrington, David T; Cioffi, William G; Miner, Thomas J

2015-10-01

Multiple studies have shown the significantly increased post-operative morbidity and mortality of patients undergoing palliative operations. It has been proposed by some authors that the American College of Surgeons National Surgical Quality Improvement Program (ACS-NSQIP) database can be used reliably to develop risk-calculators or as an aid for clinical decision-making in advanced cancer patients. ACS-NSQIP is a population-based database that by design only captures outcomes data for the first 30-day following an operation. We considered the suitability of these data as a tool for decision-making in the advanced cancer patient. Six-year retrospective review of a single institution's ACS-NSQIP database for cases identified as "Disseminated Cancer". Procedures performed with palliative intent were identified and analyzed. Of 7,763 patients within the ACS-NSQIP database, 138 (1.8%) were identified as having "Disseminated Cancer". Of the remaining 7,625 entries only 4,486 contained complete survival data for analysis. Thirty-day mortality within the "Disseminated Cancer" group was higher when compared to all other surgical patients (7.9% vs. 0.9%, P<0.001). Explicit chart review of these 138 patients revealed that 32 (23.2%) had undergone operations with palliative intent. Overall survival for palliative and non-palliative operations was significantly different (104 vs. 709 days, P<0.001). When comparing palliative to non-palliative procedures using ACS-NSQIP data, we were unable to detect a difference in 30-day mortality (9.4% vs. 7.5%, P=0.72). Calculations utilizing ACS-NSQIP data fail to demonstrate the increased mortality associated with palliative operations. Patients diagnosed with advanced cancer are not adequately represented within the database due to the limited number of cases collected. Also, more suitable outcomes measures for palliative operations such as pain relief, functional status, and quality of life, are not captured. Therefore, the sole use of thirty-day morbidity and mortality data contained in the ACS-NSQIP database is insufficient to make sound decisions for surgical palliation.

A qualitative study examining the sustainability of shared care in the delivery of palliative care services in the community.

PubMed

Demiglio, Lily; Williams, Allison M

2013-08-29

This paper focuses on the sustainability of existing palliative care teams that provide home-based care in a shared care model. For the purposes of this study, following Evashwick and Ory (2003), sustainability is understood and approached as the ability to continue the program over time. Understanding factors that influence the sustainability of teams and ways to mitigate these factors is paramount to improving the longevity and quality of service delivery models of this kind. Using qualitative data collected in interviews, the aim of this study is twofold: (1) to explore the factors that affect the sustainability of the teams at three different scales, and; (2) based on the results of this study, to propose a set of recommendations that will contribute to the sustainability of PC teams. Sustainability was conceptualized from two angles: internal and external. An overview of external sustainability was provided and the merging of data from all participant groups showed that the sustainability of teams was largely dependent on actors and organizations at the local (community), regional (Local Health Integration Network or LHIN) and provincial scales. The three scales are not self-contained or singular entities but rather are connected. Integration and collaboration within and between scales is necessary, as community capacity will inevitably reach its threshold without support of the province, which provides funding to the LHIN. While the community continues to advocate for the teams, in the long-term, they will need additional supports from the LHIN and province. The province has the authority and capacity to engrain its support for teams through a formal strategy. The recommendations are presented based on scale to better illustrate how actors and organizations could move forward. This study may inform program and policy specific to strategic ways to improve the provision of team-based palliative home care using a shared care model, while simultaneously providing direction for team-based program delivery and sustainability for other jurisdictions.

Integrating palliative care in long-term care facilities across Europe (PACE): protocol of a cluster randomized controlled trial of the 'PACE Steps to Success' intervention in seven countries.

PubMed

Smets, Tinne; Onwuteaka-Philipsen, Bregje B D; Miranda, Rose; Pivodic, Lara; Tanghe, Marc; van Hout, Hein; Pasman, Roeline H R W; Oosterveld-Vlug, Mariska; Piers, Ruth; Van Den Noortgate, Nele; Wichmann, Anne B; Engels, Yvonne; Vernooij-Dassen, Myrra; Hockley, Jo; Froggatt, Katherine; Payne, Sheila; Szczerbińska, Katarzyna; Kylänen, Marika; Leppäaho, Suvi; Barańska, Ilona; Gambassi, Giovanni; Pautex, Sophie; Bassal, Catherine; Deliens, Luc; Van den Block, Lieve

2018-03-12

Several studies have highlighted the need for improvement in palliative care delivered to older people long-term care facilities. However, the available evidence on how to improve palliative care in these settings is weak, especially in Europe. We describe the protocol of the PACE trial aimed to 1) evaluate the effectiveness and cost-effectiveness of the 'PACE Steps to Success' palliative care intervention for older people in long-term care facilities, and 2) assess the implementation process and identify facilitators and barriers for implementation in different countries. We will conduct a multi-facility cluster randomised controlled trial in Belgium, Finland, Italy, the Netherlands, Poland, Switzerland and England. In total, 72 facilities will be randomized to receive the 'Pace Steps to Success intervention' or to 'care as usual'. Primary outcome at resident level: quality of dying (CAD-EOLD); and at staff level: staff knowledge of palliative care (Palliative Care Survey). resident's quality of end-of-life care, staff self-efficacy, self-perceived educational needs, and opinions on palliative care. Economic outcomes: direct costs and quality-adjusted life years (QALYs). Measurements are performed at baseline and after the intervention. For the resident-level outcomes, facilities report all deaths of residents in and outside the facilities over a previous four-month period and structured questionnaires are sent to (1) the administrator, (2) staff member most involved in care (3) treating general practitioner, and (4) a relative. For the staff-level outcomes, all staff who are working in the facilities are asked to complete a structured questionnaire. A process evaluation will run alongside the effectiveness evaluation in the intervention group using the RE-AIM framework. The lack of high quality trials in palliative care has been recognized throughout the field of palliative care research. This cross-national cluster RCT designed to evaluate the impact of the palliative care intervention for long-term care facilities 'PACE Steps to Success' in seven countries, will provide important evidence concerning the effectiveness as well as the preconditions for optimal implementation of palliative care in nursing homes, and this within different health care systems. The study is registered at www.isrctn.com - ISRCTN14741671 (FP7-HEALTH-2013-INNOVATION-1 603111) Registration date: July 30, 2015.

Patients' perceptions of palliative care: adaptation of the Quality from the Patient's Perspective instrument for use in palliative care, and description of patients' perceptions of care received.

PubMed

Sandsdalen, Tuva; Rystedt, Ingrid; Grøndahl, Vigdis Abrahamsen; Hov, Reidun; Høye, Sevald; Wilde-Larsson, Bodil

2015-11-02

Instruments specific to palliative care tend to measure care quality from relative perspectives or have insufficient theoretical foundation. The instrument Quality from the Patient's Perspective (QPP) is based on a model for care quality derived from patients' perceptions of care, although it has not been psychometrically evaluated for use in palliative care. The aim of this study was to adapt the QPP for use in palliative care contexts, and to describe patients' perceptions of the care quality in terms of the subjective importance of the care aspects and the perceptions of the care received. A cross-sectional study was conducted between November 2013 and December 2014 which included 191 patients (73% response rate) in late palliative phase at hospice inpatient units, hospice day-care units, wards in nursing homes that specialized in palliative care and homecare districts, all in Norway. An explorative factor analysis using principal component analysis, including data from 184 patients, was performed for psychometric evaluation. Internal consistency was assessed by Cronbach's alpha and paired t-tests were used to describe patients' perceptions of their care. The QPP instrument was adapted for palliative care in four steps: (1) selecting items from the QPP, (2) modifying items and (3) constructing new items to the palliative care setting, and (4) a pilot evaluation. QPP instrument specific to palliative care (QPP-PC) consists of 51 items and 12 factors with an eigenvalue ≥1.0, and showed a stable factor solution that explained 68.25% of the total variance. The reliability coefficients were acceptable for most factors (0.79-0.96). Patients scored most aspects of care related to both subjective importance and actual care received as high. Areas for improvement were symptom relief, participation, continuity, and planning and cooperation. The QPP-PC is based on a theoretical model of quality of care, and has its roots in patients' perspectives. The instrument was developed and psychometrically evaluated in a sample of Norwegian patients with various diagnoses receiving palliative care in different care contexts. The evaluation of the QPP-PC shows promising results, although it needs to be further validated and tested in other contexts and countries.

Spiritual Well-Being for Increasing Life Expectancy in Palliative Radiotherapy Patients: A Questionnaire-Based Study.

PubMed

Hematti, Simin; Baradaran-Ghahfarokhi, Milad; Khajooei-Fard, Rasha; Mohammadi-Bertiani, Zohreh

2015-10-01

Spiritual well-being in patients with an advanced cancer has been found to positively correlate with subjective well-being, lower pain levels, hope and positive mood states, high self-esteem, social competence, purpose in life, and overall quality of life. In this regard, Quran recitation is stated to be an efficient way to increase patient spirituality and also to handle life's everyday challenges. The aim of this study was to investigate the effects of listening, reading, and watching the text of the Holy Quran, called (in this study) Quran recitation, for increasing life expectancy (LE) in palliative radiotherapy patients admitted to Radiotherapy Department of Seyed alshohada Hospital, Isfahan, Iran. A questionnaire-based study was carried out on a total of 89 palliative radiotherapy patients between March 2012 and June 2012. Informed consent was obtained. The patients were requested to complete a standardized questionnaire which was designed based on the European Organization for Research and Treatment of Cancer C30 Scale Quality of Life Questionnaire (EORTC C30 Scale QLQ). A computer program (SPSS version 16.0, Chicago, IL, USA) was used, and data were analyzed by the Wilcoxon test and Spearman's rank correlation. All hypotheses were tested using a criterion level of P = 0.05. There was a significant difference for frequency and duration of Quran recitation among patients, before and after the diagnosis of their cancer (P = 0.03). Using the Spearman's rank correlation, it was found that there was a correlation between Quran recitation and subjective well-being (r = 0.352, P < 0.001). Moreover, there was a correlation between Quran recitation and increasing LE (r = 0.311, P < 0.003). More than 60% of the patients stated that more frequent recitation would lead to more LE and/or greater reassurance. On the basis of the present work, listening, reading, and watching the text of the Holy Quran are useful for increasing LE in palliative radiotherapy patients admitted to Radiotherapy Department. In other words, a benefit of Quran recitation on outcome of radiotherapy for palliative radiotherapy patients was found.

Delivery strategies to optimize resource utilization and performance status for patients with advanced life-limiting illness: results from the "palliative care trial" [ISRCTN 81117481].

PubMed

Abernethy, Amy P; Currow, David C; Shelby-James, Tania; Rowett, Debra; May, Frank; Samsa, Gregory P; Hunt, Roger; Williams, Helena; Esterman, Adrian; Phillips, Paddy A

2013-03-01

Evidence-based approaches are needed to improve the delivery of specialized palliative care. The aim of this trial was to improve on current models of service provision. This 2×2×2 factorial cluster randomized controlled trial was conducted at an Australian community-based palliative care service, allowing three simultaneous comparative effectiveness studies. Participating patients were newly referred adults, experiencing pain, and who were expected to live >48 hours. Patients enrolled with their general practitioners (GPs) and were randomized three times: 1) individualized interdisciplinary case conference including their GP vs. control, 2) educational outreach visiting for GPs about pain management vs. control, and 3) structured educational visiting for patients/caregivers about pain management vs. control. The control condition was current palliative care. Outcomes included Australia-modified Karnofsky Performance Status (AKPS) and pain from 60 days after randomization and hospitalizations. There were 461 participants: mean age 71 years, 50% male, 91% with cancer, median survival 179 days, and median baseline AKPS 60. Only 47% of individuals randomized to the case conferencing intervention received it; based on a priori-defined analyses, 32% of participants were included in final analyses. Case conferencing reduced hospitalizations by 26% (least squares means hospitalizations per patient: case conference 1.26 [SE 0.10] vs. control 1.70 [SE 0.13], P=0.0069) and better maintained performance status (AKPS case conferences 57.3 [SE 1.5] vs. control 51.7 [SE 2.3], P=0.0368). Among patients with declining function (AKPS <70), case conferencing and patient/caregiver education better maintained performance status (AKPS case conferences 55.0 [SE 2.1] vs. control 46.5 [SE 2.9], P=0.0143; patient/caregiver education 54.7 [SE 2.8] vs. control 46.8 [SE 2.1], P=0.0206). Pain was unchanged. GP education did not change outcomes. A single case conference added to current specialized community-based palliative care reduced hospitalizations and better maintained performance status. Comparatively, patient/caregiver education was less effective; GP education was not effective. Copyright © 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

Feasibility Testing of an Emergency Department Screening Tool To Identify Older Adults Appropriate for Palliative Care Consultation.

PubMed

Ouchi, Kei; Block, Susan D; Schonberg, Mara A; Jamieson, Emily S; Aaronson, Emily L; Pallin, Daniel J; Tulsky, James A; Schuur, Jeremiah D

2017-01-01

Seriously ill older adults in the emergency department (ED) may benefit from palliative care referral, yet little is known about how to identify these patients. To assess the performance and determine the acceptability of a content-validated palliative care screening tool. We surveyed Emergency Medicine (EM) attending physicians at the end of their shifts using the screening tool and asked them to retrospectively apply it to all patients ≥65 years whom they had cared for. We conducted the survey for three consecutive weeks in October 2015. EM attending physicians at an urban, university-affiliated ED. Patient characteristics, acceptability rating, and time per patient screened. We approached 38 attending physicians to apply the screening tool for 69 eligible shifts. Physicians agreed to participate during 55 shifts (80%) and screened 207 patients. On 14 shifts (20%), physicians declined to participate. Mean age of the screened patients was 75 years, 51% were male, and 45% had at least one life-limiting illness. Overall, 67 patients (32%) screened positive for palliative care needs. Seventy percent of physicians (n = 33) found the screening tool acceptable to use and the average time of completion was 1.8 minutes per patient screened. A rapid screen of older adults for palliative care needs was acceptable to a majority of EM physicians and identified a significant number of patients who may benefit from palliative care referral. Further research is needed to improve acceptability and determine the appropriate care pathway for patients with palliative care needs.

Prevalence and Predictors of Burnout Among Hospice and Palliative Care Clinicians in the U.S

PubMed Central

Kamal, Arif H.; Bull, Janet H.; Wolf, Steven P.; Swetz, Keith M.; Shanafelt, Tait D.; Ast, Katherine; Kavalieratos, Dio; Sinclair, Christian T.; Abernethy, Amy P.

2016-01-01

Context Many clinical disciplines report high rates of burnout, which lead to low quality of care. Palliative care clinicians routinely manage patients with significant suffering, aiming to improve quality of life. As a major role of palliative care clinicians involves educating patients and caregivers regarding identifying priorities and balancing stress, we wondered how clinician self-management of burnout matches against the emotionally exhaustive nature of the work. Objectives We sought to understand the prevalence and predictors of burnout using a discipline-wide survey. Methods We asked American Academy of Hospice and Palliative Medicine clinician members to complete an electronic survey querying demographic factors, job responsibilities, and the Maslach Burnout Inventory. We performed univariate and multivariate regression analyses to identify predictors of high rates of burnout. Results We received 1357 responses (response rate 30%). Overall, we observed a burnout rate of 62%, with higher rates reported by nonphysician clinicians. Most burnout stemmed from emotional exhaustion, with depersonalization comprising a minor portion. Factors associated with higher rates of burnout include working in smaller organizations, working longer hours, being younger than 50 years, and working weekends. We did not observe different rates between palliative care clinicians and hospice clinicians. Higher rated self-management activities to mitigate burnout include participating in interpersonal relationships and taking vacations. Conclusions Burnout is a major issue facing the palliative care clinician workforce. Strategies at the discipline-wide and individual levels are needed to sustain the delivery of responsive, available, high-quality palliative care for all patients with serious illness. PMID:26620234

A Review of Apps for Calming, Relaxation, and Mindfulness Interventions for Pediatric Palliative Care Patients.

PubMed

Weekly, Taelyr; Walker, Nicole; Beck, Jill; Akers, Sean; Weaver, Meaghann

2018-01-26

Patients and families increasingly use mobile apps as a relaxation and distraction intervention for children with complex, chronic medical conditions in the waiting room setting or during inpatient hospitalizations; and yet, there is limited data on app quality assessment or review of these apps for level of engagement, functionality, aesthetics, or applicability for palliative pediatric patients. The pediatric palliative care study team searched smartphone application platforms for apps relevant to calming, relaxation, and mindfulness for pediatric and adolescent patients. Apps were reviewed using a systematic data extraction tool. Validated Mobile Application Rating Scale (MARS) scores were determined by two blinded reviewers. Apps were then characterized by infant, child, adolescent, and adult caregiver group categories. Reviewer discussion resulted in consensus. Sixteen of the 22 apps identified were included in the final analysis. The apps operated on either iOS or Android platforms. All were available in English with four available in Spanish. Apps featured a relaxation approach (12/16), soothing images (8/16), and breathing techniques (8/16). Mood and sleep patterns were the main symptoms targeted by apps. Provision of mobile apps resource summary has the potential to foster pediatric palliative care providers' knowledge of app functionality and applicability as part of ongoing patient care.

Burnout syndrome in nurses working in palliative care units: An analysis of associated factors.

PubMed

Rizo-Baeza, Mercedes; Mendiola-Infante, Susana Virginia; Sepehri, Armina; Palazón-Bru, Antonio; Gil-Guillén, Vicente Francisco; Cortés-Castell, Ernesto

2018-01-01

To analyse the association between psychological, labour and demographic factors and burnout in palliative care nursing. There is a lack of published research evaluating burnout in palliative care nursing. This observational cross-sectional study involved 185 palliative care nurses in Mexico. The primary variables were burnout defined by its three dimensions (emotional exhaustion, depersonalization and personal accomplishment). As secondary variables, psychological, labour and demographic factors were considered. A binary logistic regression model was constructed to determine factors associated with burnout. A total of 69 nurses experienced high emotional exhaustion (37.3%), 65 had high depersonalization (35.1%) and 70 had low personal performance (37.8%). A higher proportion of burnout was found in the participants who were single parents, working >8 hr per day, with a medium/high workload, a lack of a high professional quality of life and a self-care deficit. Our multivariate models were very accurate in explaining burnout in palliative care nurses. These models must be externally validated to predict burnout and prevent future complications of the syndrome accurately. Nurses who present the factors found should be the focus of interventions to reduce work stress. © 2017 John Wiley & Sons Ltd.

Better treatment strategies for patients with acute cholecystitis and American Society of Anesthesiologists classification 3 or greater.

PubMed

Yun, Sung Su; Hwang, Dae Wook; Kim, Se Won; Park, Sang Hwan; Park, Sang Jin; Lee, Dong Shick; Kim, Hong Jin

2010-07-01

Laparoscopic cholecystectomy is the best treatment choice for acute cholecystitis. However, it still carries high conversion and mortality rates. The purpose of this study was to find out better treatment strategies for high surgical risk patients with acute cholecystitis. Between January 2002 and June 2008, we performed percutaneous cholecystostomy instead of emergency cholecystectomy in 44 patients with acute cholecystitis and American Society of Anesthesiologists (ASA) classification 3 or greater. This was performed in 31 patients as a bridge procedure before elective cholecystectomy (bridge group) and as a palliative procedure in 11 patients (palliation group). The mean age of patients was 71.6 years (range 52-86 years). The mean ASA classifications before and after percutaneous cholecystostomy were 3.3 +/- 0.5 and 2.5 +/- 0.6, respectively, in the bridge group, and 3.6 +/- 0.7 and 3.1 +/- 1.0, in the palliation group, respectively. Percutaneous cholecystostomy was technically successful in all patients. There were two deaths after percutaneous cholecystostomy in the palliation group due to underlying ischemic heart disease and multiple organ failure. Resumption of oral intake was possible 2.9 +/- 1.8 days in the bridge group and 3.9 +/- 3.5 days in the palliation group after percutaneous cholecystostomy. We attempted 17 laparoscopic cholecystectomies and experienced one failure due to bile duct injury (success rate: 94.1%). The postoperative course of all cholecystectomy patients was uneventful. Percutaneous cholecystostomy is an effective bridge procedure before cholecystectomy in patients with acute cholecystitis and ASA classification 3 or greater.

Identification of the predictors of cognitive impairment in patients with cancer in palliative care: a prospective longitudinal analysis.

PubMed

Kurita, Geana Paula; Benthien, Kirstine Skov; Sjøgren, Per; Kaasa, Stein; Hjermstad, Marianne Jensen

2017-03-01

Studies with neuropsychological assessments in patients with cancer are sparse, and the evidence is very limited regarding their status of cognitive function over time. This study aimed at assessing the prevalence and predictors of cognitive impairment in patients with cancer in palliative care. Prospective longitudinal investigation derived from the European Palliative Care Cancer Symptom study (2011-2013) including patients with cancer in palliative care, ≥18 years, and with at least one assessment post-inclusion. For cognitive assessment, a 4-item version of the Mini Mental State Examination was applied at inclusion and after 4 to 16 weeks. Logistic regression model with multiple imputations was applied. The sample consisted of 1568 patients (50% male, mean age 65.5, 42% with 10-12 years schooling, mean Karnofsky Performance Status-KPS 68%). Longitudinal analysis of the patients with complete MMSE at both assessments (n = 801) showed that 64.5% were not impaired, 12.5% remained cognitively impaired, 11.4% developed impairment, and 11.6% improved. Those who improved cognitively also reported reduced pain intensity and increased appetite. The predictive model (n = 1351) showed that those with low KPS (OR = 1.6, 95% CI 1.0-2.5) most often developed cognitive impairment, while patients with breast cancer (OR = 0.4, 95% CI 0.2-0.7) had lower odds for impairment. During palliative care, a substantial number of patients remained cognitively impaired or developed cognitive impairment; however, it is noteworthy that improvement was also observed. Physical performance and cancer type may predict cognitive impairment.

Phases-of-illness paradigm: better communication, better outcomes

DTIC Science & Technology

2011-11-28

ILP) 2. Hold continuous sedation at 0600 ( nurse ) 3. Notify RT when the patient is ‘awake’ ( nurse ) 4. Perform breathing trial (RT) CVP, central...recovery phases. Patients transitioned to palliative care would exit this model into a palliative care ‘phase’ that is distinct because it is blind...patient-driven standardization of supportive care elements, such as types of monitoring, frequency and type of laboratory assessment, sedation

[Transferring palliative-care patients from hospital to community care: A qualitative study].

PubMed

Correa-Casado, Matías; Granero-Molina, José; Hernández-Padilla, José Manuel; Fernández-Sola, Cayetano

To know the experience of case-manager nurses with regard to transferring palliative-care patients from the hospital to their homes. Qualitative phenomenological study carried out in 2014-2015. Poniente and Almería health districts, which referral hospitals are Poniente Hospital and Torrecárdenas Hospital, respectively. A purposive sample comprised of 12 case-manager nurses was recruited from the aforementioned setting. Theoretical data saturation was achieved after performing 7 in-depth individual interviews and 1 focus group. Data analysis was performed following Colaizzi's method. Three themes emerged: (1) 'Case-management nursing as a quality, patient-centred service' (2) 'Failures of the information systems', with the subthemes "patients" insufficient and inadequate previous information" and "ineffective between-levels communication channels for advanced nursing"; (3) 'Deficiencies in discharge planning', with the subthemes "deficient management of resources on admission", "uncertainty about discharge" and "insufficient human resources to coordinate the transfer". Case-manager nurses consider themselves a good-quality service. However, they think there are issues with coordination, information and discharge planning of palliative patients from hospital. It would be useful to review the communication pathways of both care and discharge reports, so that resources needed by palliative patients are effectively managed at the point of being transferred home. Copyright © 2016 Elsevier España, S.L.U. All rights reserved.

Compassion Satisfaction, Compassion Fatigue, and Burnout in Spain and Brazil: ProQOL Validation and Cross-cultural Diagnosis.

PubMed

Galiana, Laura; Arena, Fernanda; Oliver, Amparo; Sansó, Noemí; Benito, Enric

2017-03-01

Palliative care professionals' quality of life has emerged as a growing issue of interest in health care literature, centered on concerns about professionals' compassion within a context of work characterized by pain and death. The aim of this study was threefold: 1) to study the psychometric properties of both the Spanish and the Portuguese versions of the ProQOL scale, by means of confirmatory factor analyses; 2) to offer a diagnosis of compassion satisfaction and compassion fatigue levels of Spanish and Brazilian palliative care professionals; and 3) to compare levels in ProQOL between countries. Two surveys with a cross-sectional design were carried out; 161 Brazilian palliative care professionals and 385 Spanish participated in this study. Confirmatory factor analysis for both the Spanish and the Portuguese versions showed an adequate fit. Reliability estimates were also adequate, with problems with the burnout dimension. Spanish and Brazilian palliative care professionals showed high levels of compassion satisfaction (specially, for the Brazilian samples), medium levels of secondary traumatic stress, and low levels of burnout. Finally, statistically significant differences in Spanish and Brazilian levels of compassion satisfaction and secondary traumatic stress were found, but not in burnout. The ProQOL shows psychometric goodness in its Spanish and Portuguese versions, although some items should be revised. The ProQOL is also useful for diagnosis and is sensitive enough to distinguish nuances as that found between Brazilian and Spanish professionals. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Evaluation of Spiritual Needs of Patients with Advanced Cancer in a Palliative Care Unit

PubMed Central

Valls, Joan; Porta, Josep; Viñas, Juan

2014-01-01

Abstract Introduction: Spiritual needs play an important role in palliative care as both a clinical dimension and a therapeutic strategy. However, recent studies have shown that the management of this dimension still remains a challenge at the clinical level of palliative care. Goals: Our goal was to evaluate the spiritual needs of patients diagnosed with advanced and terminal cancer by the palliative care unit of a hospital in Barcelona, Spain. Methods: An observational study was conducted that involved 50 patients who were recruited between May 2007 and January 2008. A questionnaire was used which included 28 items selected from a review of the literature; the responses were analyzed using a five-point Lickert scale. The results were grouped in 11 categories corresponding to different spiritual needs. Results: Two spiritual needs emerged as the most relevant for the patients: their need to be recognized as a person until the end of their life and their need to know the truth about their illness. The least important spiritual needs were identified as those: for continuity and an afterlife; to get rid of obsessions; to achieve freedom from blame and to be able to forgive others; and the need for reconciliation and to feel forgiven by others. Conclusions: When patients knew the truth about their illnesses and they were treated with dignity, their most important needs were likely to be covered. These results suggest that patients receiving palliative care wish to live for the present with as much normality as possible and show only minor concern for their past and future. PMID:24745870

Illness perceptions, adjustment to illness, and depression in a palliative care population.

PubMed

Price, Annabel; Goodwin, Laura; Rayner, Lauren; Shaw, Emma; Hansford, Penny; Sykes, Nigel; Monroe, Barbara; Higginson, Irene; Hotopf, Matthew; Lee, William

2012-05-01

Representations of illness have been studied in several populations, but research is limited in palliative care. To describe illness representations in a population with advanced disease receiving palliative care and to examine the relationship between illness perceptions, adaptive coping, and depression. A cross-sectional survey of 301 consecutive eligible patients recruited from a palliative care service in south London, U.K. Measures used included the Brief Illness Perception Questionnaire (Brief IPQ), the Mental Adjustment to Cancer (MAC) Scale, and the Primary Care Evaluation of Mental Disorders Patient Health Questionnaire-9. Scores were not normally distributed for most questions on the Brief IPQ. The correlations found between items on the Brief IPQ were understandable in the context of advanced disease. MAC helplessness-hopelessness and fighting spirit were highly correlated with items on the Brief IPQ in opposite directions. The Brief IPQ domains of consequences, identity, concern, personal control, and emotion were associated with depression, a relationship that was not explained by adaptive coping. Seven causal attribution themes were identified: don't know, personal responsibility, exposure, pathological process, intrinsic personal factors, chance, fate or luck, and other. Both lung cancer diagnosis and gender were found to be independently associated with personal responsibility attribution. None of the attribution themes were associated with the presence of depression. Assessment of illness perceptions in palliative care is likely to yield important information about risk of depression and will help clinicians to personalize management of advanced disease. Copyright © 2012 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

Palliative Airway Stenting Performed Under Radiological Guidance and Local Anesthesia

DOE Office of Scientific and Technical Information (OSTI.GOV)

Profili, Stefano; Manca, Antonio; Feo, Claudio F.

2007-02-15

Purpose. To assess the effectiveness of airway stenting performed exclusively under radiological guidance for the palliation of malignant tracheobronchial strictures. Methods. We report our experience in 16 patients with malignant tracheobronchial stricture treated by insertion of 20 Ultraflex self-expandable metal stents performed under fluoroscopic guidance only. Three patients presented dysphagia grade IV due to esophageal malignant infiltration; they therefore underwent combined airway and esophageal stenting. All the procedures were performed under conscious sedation in the radiological room; average procedure time was around 10 min, but the airway impediment never lasted more than 40 sec. Results. We obtained an overall technicalmore » success in 16 cases (100%) and clinical success in 14 patients (88%). All prostheses were successfully placed without procedural complications. Rapid clinical improvement with symptom relief and normalization of respiratory function was obtained in 14 cases. Two patients died within 48 hr from causes unrelated to stent placement. Two cases (13%) of migration were observed; they were successfully treated with another stent. Tumor overgrowth developed in other 2 patients (13%); however, no further treatment was possible because of extensive laryngeal infiltration. Conclusions. Tracheobronchial recanalization with self-expandable metal stents is a safe and effective palliative treatment for malignant strictures. Airway stenting performed exclusively under fluoroscopic view was rapid and well tolerated.« less

The Perinatal Palliative Care Perceptions and Barriers Scale Instrument©: development and validation.

PubMed

Wool, Charlotte; Northam, Sally

2011-12-01

To devise and test an instrument measuring clinician perceptions of perinatal palliative care (PPC) and barriers to care delivery. PPC was theorized to involve the care of pregnant women and their families after prenatal testing resulted in a life-limiting fetal diagnosis. Both giving birth to a child with a life-limiting condition or termination of pregnancy for fetal anomaly can be emotionally traumatic life events. Clinicians were thought to face ethical dilemmas that involved approaches to care for this population. The ethical dilemmas were measured on a perceptions scale using items about informed consent, justice, beneficence, and autonomy. Barriers were theorized as obstacles to delivering quality PPC and included insufficient education, personal discomfort, and difficulty garnering team or administrative support for care. Licensed clinicians practicing in the perinatal field. Stage 1 entailed instrument development and validation, which was achieved through a Delphi study involving 11 expert panelists. The devised instrument included 64 six-point Likert items. In stage 2, a computer survey gathered data from a multidisciplinary, clinician group. A total of 264 clinicians completed the survey. Exploratory factor analysis with varimax rotation was used to validate the instrument, evaluate the factors, and summarize the explained variance achieved by sum scores of the perceptions and barriers scales. The perceptions scale was reduced to 23 items with a 6-factor solution explaining 67% of the variance with a good internal consistency reliability of 0.77 (Cronbach α). The 22-item barriers scale had a 6-factor solution explaining 71% of the variance with an alpha reliability of 0.83. The Perinatal Palliative Care Perceptions and Practice Barriers Scale instrument is a valid and reliable measure of PPC perceptions and barriers for measuring the attitudes of physicians and nurses. Use of this instrument can foster educational programs and hospital planning for PPC teams that provide grieving families with the varied support they need. It is also a useful instrument for examining trends in the clinician perspectives and practice barriers as more genetic testing and subsequent terminal diagnoses occur.

Reporting Characteristics of Cancer Pain: A Systematic Review and Quantitative Analysis of Research Publications in Palliative Care Journals

PubMed Central

Kumar, Senthil P

2011-01-01

Objective: A common disorder requiring symptom palliation in palliative and end-of-life care is cancer. Cancer pain is recognized as a global health burden. This paper sought to systematically examine the extent to which there is an adequate scientific research base on cancer pain and its reporting characteristics in the palliative care journal literature. Materials and Methods: Search conducted in MEDLINE and CINAHL sought to locate all studies published in 19 palliative/ hospice/ supportive/ end-of-life care journals from 2009 to 2010. The journals included were: American Journal of Hospice and Palliative Care, BMC Palliative Care, Current Opinion in Supportive and Palliative Care, End of Life Care Journal, European Journal of Palliative Care, Hospice Management Advisor, Indian Journal of Palliative Care, International Journal of Palliative Nursing, Internet Journal of Pain Symptom Control and Palliative Care, Journal of Pain and Palliative Care Pharmacotherapy, Journal of Palliative Care, Journal of Palliative Medicine, Journal of Social Work in End-of-life and Palliative Care, Journal of Supportive Oncology, Palliative Medicine, Palliative and Supportive Care, and Supportive Care in Cancer. Journal contents were searched to identify studies that included cancer pain in abstract. Results: During the years 2009 and 2010, of the selected 1,569 articles published in the journals reviewed, only 5.86% (92 articles) were on cancer pain. Conclusion: While researchers in the field of palliative care have studied cancer pain, the total percentage for studies is still a low 5.86%. To move the field of palliative care forward so that appropriate guidelines for cancer pain management can be developed, it is critical that more research be reported upon which to base cancer pain therapy in an evidence-based palliative care model. PMID:21633623

Branding Palliative Care Units by Avoiding the Terms "Palliative" and "Hospice".

PubMed

Dai, Ying-Xiu; Chen, Tzeng-Ji; Lin, Ming-Hwai

2017-01-01

The term "palliative care" has a negative connotation and may act as a barrier to early patient referrals. Rebranding has thus been proposed as a strategy to reduce the negative perceptions associated with palliative care. For example, using the term "supportive care" instead of "palliative care" in naming palliative care units has been proposed in several studies. In Taiwan, terms other than "palliative" and "hospice" are already widely used in the names of palliative care units. With this in mind, this study investigated the characteristics of palliative care unit names in order to better understand the role of naming in palliative care. Relevant data were collected from the Taiwan Academy of Hospice Palliative Medicine, the National Health Insurance Administration of the Ministry of Health and Welfare, and the open database maintained by the government of Taiwan. We found a clear phenomenon of avoiding use of the terms "palliative" and "hospice" in the naming of palliative care units, a phenomenon that reflects the stigma attached to the terms "palliative" and "hospice" in Taiwan. At the time of the study (September, 2016), there were 55 palliative care units in Taiwan. Only 20.0% (n = 11) of the palliative care unit names included the term "palliative," while 25.2% (n = 14) included the term "hospice." Religiously affiliated hospitals were less likely to use the terms "palliative" and "hospice" (χ 2 = 11.461, P = .001). There was also a lower prevalence of use of the terms "palliative" and "hospice" for naming palliative care units in private hospitals than in public hospitals (χ 2 = 4.61, P = .032). This finding highlights the strong stigma attached to the terms "palliative" and "hospice" in Taiwan. It is hypothesized that sociocultural and religious factors may partially account for this phenomenon.

Meaninglessness in terminally ill cancer patients: a validation study and nurse education intervention trial.

PubMed

Morita, Tatsuya; Murata, Hisayuki; Hirai, Kei; Tamura, Keiko; Kataoka, Jun; Ohnishi, Hideki; Akizuki, Nobuya; Kurihara, Yukie; Akechi, Tatsuo; Uchitomi, Yosuke

2007-08-01

Recent empirical studies revealed that fostering patients' perception of meaning in their life is an essential task for palliative care clinicians. However, few studies have reported the effects of training programs for nurses specifically aimed at improving skills to relieve the meaninglessness of terminally ill cancer patients, and we have had no specific measurement instruments. The primary aims of this study were 1) to validate measurement tools to quantify nurses' self-reported practice and attitudes toward caring for terminally ill cancer patients feeling meaninglessness and 2) to explore the effects of the five-hour educational workshop focusing on meaninglessness on nurses' self-reported practice, attitudes toward caring for such patients, confidence, burnout, death anxiety, and meaning of life. A quasi-experimental pre-post questionnaire survey was performed on 147 nurses. The questionnaire was distributed before the intervention workshop and one and six months after. The workshop consisted of lecture, role-play, and the exercise of assessment and care planning based on two vignette verbatim records. First, using the first questionnaire sample and an additional sample of 20 nurses for the test-retest examination, we validated a six-item Self-Reported Practice scale, and an eight-item Attitudes Toward Caring for Patients Feeling Meaninglessness scale with three subscales (Willingness to Help, Positive Appraisal, and Helplessness). The nurses also completed a scale to assess confidence in caring for terminally ill patients with meaninglessness, the Maslach Burnout Inventory, the Death Attitude Inventory, the Frommelt Attitudes Toward Care of the Dying scale, the Self-Reported Practice Score in General Communication, and the three pain-related items from the Palliative Care Quiz for Nursing. For the Self-Reported Practice scale and the subscales of the Attitudes Toward Caring for Patients Feeling Meaninglessness scale, the Cronbach's alpha coefficients were 0.63-0.91, and the intra-class correlations were 0.89-0.94. The Self-Reported Practice scale significantly, but moderately, correlated with the Self-Reported Practice Score in General Communication (P=0.41). The Willingness to Help and Helplessness subscales significantly but weakly correlated with the Frommelt scale (P=-0.27, 0.21). Both scales did not correlate or minimally correlated with the Palliative Care Quiz for Nursing (P<0.20). The construct validity was confirmed using factor analysis. At the follow-up, of 147 nurses who participated in this workshop, 91 (62%) and 80 (54%) nurses responded. Self-reported practice and confidence significantly improved, whereas helplessness, emotional exhaustion, and death anxiety significantly decreased. The percentages of nurses who evaluated this program as "useful" or "very useful" were 79% (to understand the conceptual framework in caring for terminally ill patients with meaninglessness), 73% (to help in self-disclosing nurses' personal beliefs, values, and life goals), and 80% (to help in learning how to provide care for patients with meaninglessness). The Self-Reported Practice scale and the Attitudes Toward Caring for Patients Feeling Meaninglessness scale are reliable and valid tools to specifically quantify nurses' self-reported practice and attitudes toward caring for terminally ill cancer patients feeling meaninglessness of life. The five-hour workshop appeared to have a modest but significant beneficial effect on nurse-reported practice, attitudes, and confidence in providing care for terminally ill cancer patients feeling meaninglessness. Further educational intervention trials with control groups are promising.

Addressing Palliative Sedation during Expert Consultation: A Descriptive Analysis of the Practice of Dutch Palliative Care Consultation Teams

PubMed Central

Hoek, Patrick; Grandjean, Ilse; Verhagen, Constans A. H. H. V. M.; Jansen-Landheer, Marlies L. E. A.; Schers, Henk J.; Galesloot, Cilia; Vissers, Kris C. P.; Engels, Yvonne; Hasselaar, Jeroen G.J.

2015-01-01

Main Objective Since palliative sedation is considered a complex intervention, consultation teams are increasingly established to support general practice. This study aims to offer insight into the frequency and characteristics of expert consultations regarding palliative sedation. Methods We performed a retrospective analysis of a longitudinal database. This database contained all patient-related consultations by Dutch Palliative Care Consultation teams, that were requested between 2004 and 2011. We described the frequency and characteristics of these consultations, in particular of the subgroup of consultations in which palliative sedation was addressed (i.e. PSa consultations). We used multivariate regression analysis to explore consultation characteristics associated with a higher likelihood of PSa consultations. Main Results and Their Significance Of the 44,443 initial consultations, most were requested by general practitioners (73%) and most concerned patients with cancer (86%). Palliative sedation was addressed in 18.1% of all consultations. Palliative sedation was relatively more often discussed during consultations for patients with a neurologic disease (OR 1.79; 95% CI: 1.51–2.12) or COPD (OR 1.39; 95% CI: 1.15–1.69) than for patients with cancer. We observed a higher likelihood of PSa consultations if the following topics were also addressed during consultation: dyspnoea (OR 1.30; 95% CI: 1.22–1.40), agitation/delirium (OR 1.57; 95% CI: 1.47–1.68), exhaustion (OR 2.89; 95% CI: 2.61–3.20), euthanasia-related questions (OR 2.65; 95% CI: 2.37–2.96) or existential issues (OR 1.55; 95% CI: 1.31–1.83). Conclusion In conclusion, PSa consultations accounted for almost one-fifth of all expert consultations and were associated with several case-related characteristics. These characteristics may help clinicians in identifying patients at risk for a more complex disease trajectory at the end of life. PMID:26301746

Emergency department-initiated palliative care for advanced cancer patients: protocol for a pilot randomized controlled trial.

PubMed

Kandarian, Brandon; Morrison, R Sean; Richardson, Lynne D; Ortiz, Joanna; Grudzen, Corita R

2014-06-25

For patients with advanced cancer, visits to the emergency department (ED) are common. Such patients present to the ED with a specific profile of palliative care needs, including burdensome symptoms such as pain, dyspnea, or vomiting that cannot be controlled in other settings and a lack of well-defined goals of care. The goals of this study are: i) to test the feasibility of recruiting, enrolling, and randomizing patients with serious illness in the ED; and ii) to evaluate the impact of ED-initiated palliative care on health care utilization, quality of life, and survival. This is a protocol for a single center parallel, two-arm randomized controlled trial in ED patients with metastatic solid tumors comparing ED-initiated palliative care referral to a control group receiving usual care. We plan to enroll 125 to 150 ED-advanced cancer patients at Mount Sinai Hospital in New York, USA, who meet the following criteria: i) pass a brief cognitive screen; ii) speak fluent English or Spanish; and iii) have never been seen by palliative care. We will use balanced block randomization in groups of 50 to assign patients to the intervention or control group after completion of a baseline questionnaire. All research staff performing assessment or analysis will be blinded to patient assignment. We will measure the impact of the palliative care intervention on the following outcomes: i) timing and rate of palliative care consultation; ii) quality of life and depression at 12 weeks, measured using the FACT-G and PHQ-9; iii) health care utilization; and iv) length of survival. The primary analysis will be based on intention-to-treat. This pilot randomized controlled trial will test the feasibility of recruiting, enrolling, and randomizing patients with advanced cancer in the ED, and provide a preliminary estimate of the impact of palliative care referral on health care utilization, quality of life, and survival. Clinical Trials.gov identifier: NCT01358110 (Entered 5/19/2011).

Utilisation of home-based physician, nurse and personal support worker services within a palliative care programme in Ontario, Canada: trends over 2005-2015.

PubMed

Sun, Zhuolu; Laporte, Audrey; Guerriere, Denise N; Coyte, Peter C

2017-05-01

With health system restructuring in Canada and a general preference by care recipients and their families to receive palliative care at home, attention to home-based palliative care continues to increase. A multidisciplinary team of health professionals is the most common delivery model for home-based palliative care in Canada. However, little is known about the changing temporal trends in the propensity and intensity of home-based palliative care. The purpose of this study was to assess the propensity to use home-based palliative care services, and once used, the intensity of that use for three main service categories: physician visits, nurse visits and care by personal support workers (PSWs) over the last decade. Three prospective cohort data sets were used to track changes in service use over the period 2005 to 2015. Service use for each category was assessed using a two-part model, and a Heckit regression was performed to assess the presence of selectivity bias. Service propensity was modelled using multivariate logistic regression analysis and service intensity was modelled using log-transformed ordinary least squares regression analysis. Both the propensity and intensity to use home-based physician visits and PSWs increased over the last decade, while service propensity and the intensity of nurse visits decreased. Meanwhile, there was a general tendency for service propensity and intensity to increase as the end of life approached. These findings demonstrate temporal changes towards increased use of home-based palliative care, and a shift to substitute care away from nursing to less expensive forms of care, specifically PSWs. These findings may provide a general idea of the types of services that are used more intensely and require more resources from multidisciplinary teams, as increased use of home-based palliative care has placed dramatic pressures on the budgets of local home and community care organisations. © 2016 John Wiley & Sons Ltd.

A scoping review of palliative care for children in low- and middle-income countries.

PubMed

Sasaki, Hatoko; Bouesseau, Marie-Charlotte; Marston, Joan; Mori, Rintaro

2017-11-25

Ninety-eight percent of children needing palliative care live in low- and middle-income countries (LMICs), and almost half of them live in Africa. In contrast to the abundance of data on populations in high income countries, the current data on populations in LMICs is woefully inadequate. This study aims to identify and summarize the published literature on the need, accessibility, quality, and models for palliative care for children in LMICs. A scoping review was performed following the method of Arksey and O'Malley. Systematic searches were conducted on PubMed and Google Scholar using the main keywords, 'children AND palliative care OR terminal care OR hospice OR end of life AND developing countries OR LMICs.' Additional publications were obtained by handsearching. Papers were only included if they reported on the need, accessibility, quality, and models for palliative care for children in LMICs. Fifteen papers met the inclusion criteria for review. Of these, 10 assessed need, seven examined availability and/or accessibility, one assessed quality, and one examined the models. We found an urgent need for palliative care, particularly in the training for health workers and improving poor availability and/or accessibility to palliative care in terms of factors such as medication and bereavement support. The best practice models demonstrated feasibility and sustainability through cooperation with governments and community organizations. The quality of pain management and emotional support was lower in LMICs compared to HICs. Although we found limited evidence in this review, we identified common challenges such as the need for further training for health workers and greater availability of opioid analgesics. While efforts to change the current systems and laws applying to children in LMICs are important, we should also tackle underlying factors including the need to raise awareness about palliative care in public health and improve the accuracy of data collection.

Towards a standardised approach for evaluating guidelines and guidance documents on palliative sedation: study protocol

PubMed Central

2014-01-01

Background Sedation in palliative care has received growing attention in recent years; and so have guidelines, position statements, and related literature that provide recommendations for its practice. Yet little is known collectively about the content, scope and methodological quality of these materials. According to research, there are large variations in palliative sedation practice, depending on the definition and methodology used. However, a standardised approach to comparing and contrasting related documents, across countries, associations and governmental bodies is lacking. This paper reports on a protocol designed to enable thorough and systematic comparison of guidelines and guidance documents on palliative sedation. Methods and design A multidisciplinary and international group of palliative care researchers, identified themes and clinical issues on palliative sedation based on expert consultations and evidence drawn from the EAPC (European Association of Palliative Care) framework for palliative sedation and AGREE II (Appraisal Guideline Research and Evaluation) instrument for guideline assessment. The most relevant themes were selected and built into a comprehensive checklist. This was tested on people working closely with practitioners and patients, for user-friendliness and comprehensibility, and modified where necessary. Next, a systematic search was conducted for guidelines in English, Dutch, Flemish, or Italian. The search was performed in multiple databases (PubMed, CancerLit, CNAHL, Cochrane Library, NHS Evidence and Google Scholar), and via other Internet resources. Hereafter, the final version of the checklist will be used to extract data from selected literature, and the same will be compiled, entered into SPSS, cleaned and analysed systematically for publication. Discussion We have together developed a comprehensive checklist in a scientifically rigorous manner to allow standardised and systematic comparison. The protocol is applicable to all guidelines on palliative sedation, and the approach will contribute to rigorous and systematic comparison of international guidelines on any challenging topic such as this. Results from the study will provide valuable insights into common core elements and differences between the selected guidelines, and the extent to which recommendations are derived from, or match those in the EAPC framework. The outcomes of the study will be disseminated via peer-reviewed journals and directly to appropriate audiences. PMID:25028571

Towards a standardised approach for evaluating guidelines and guidance documents on palliative sedation: study protocol.

PubMed

Abarshi, Ebun; Rietjens, Judith; Caraceni, Augusto; Payne, Sheila; Deliens, Luc; Van Den Block, Lieve

2014-01-01

Sedation in palliative care has received growing attention in recent years; and so have guidelines, position statements, and related literature that provide recommendations for its practice. Yet little is known collectively about the content, scope and methodological quality of these materials. According to research, there are large variations in palliative sedation practice, depending on the definition and methodology used. However, a standardised approach to comparing and contrasting related documents, across countries, associations and governmental bodies is lacking. This paper reports on a protocol designed to enable thorough and systematic comparison of guidelines and guidance documents on palliative sedation. A multidisciplinary and international group of palliative care researchers, identified themes and clinical issues on palliative sedation based on expert consultations and evidence drawn from the EAPC (European Association of Palliative Care) framework for palliative sedation and AGREE II (Appraisal Guideline Research and Evaluation) instrument for guideline assessment. The most relevant themes were selected and built into a comprehensive checklist. This was tested on people working closely with practitioners and patients, for user-friendliness and comprehensibility, and modified where necessary. Next, a systematic search was conducted for guidelines in English, Dutch, Flemish, or Italian. The search was performed in multiple databases (PubMed, CancerLit, CNAHL, Cochrane Library, NHS Evidence and Google Scholar), and via other Internet resources. Hereafter, the final version of the checklist will be used to extract data from selected literature, and the same will be compiled, entered into SPSS, cleaned and analysed systematically for publication. We have together developed a comprehensive checklist in a scientifically rigorous manner to allow standardised and systematic comparison. The protocol is applicable to all guidelines on palliative sedation, and the approach will contribute to rigorous and systematic comparison of international guidelines on any challenging topic such as this. Results from the study will provide valuable insights into common core elements and differences between the selected guidelines, and the extent to which recommendations are derived from, or match those in the EAPC framework. The outcomes of the study will be disseminated via peer-reviewed journals and directly to appropriate audiences.

Feasibility of hospital-initiated non-facilitator assisted advance care planning documentation for patients with palliative care needs.

PubMed

Kok, Maaike; van der Werff, Gertruud F M; Geerling, Jenske I; Ruivenkamp, Jaap; Groothoff, Wies; van der Velden, Annette W G; Thoma, Monique; Talsma, Jaap; Costongs, Louk G P; Gans, Reinold O B; de Graeff, Pauline; Reyners, Anna K L

2018-05-24

Advance Care Planning (ACP) and its documentation, accessible to healthcare professionals regardless of where patients are staying, can improve palliative care. ACP is usually performed by trained facilitators. However, ACP conversations would be more tailored to a patient's specific situation if held by a patient's clinical healthcare team. This study assesses the feasibility of ACP by a patient's clinical healthcare team, and analyses the documented information including current and future problems within the palliative care domains. This multicentre study was conducted at the three Groningen Palliative Care Network hospitals in the Netherlands. Patients discharged from hospital with a terminal care indication received an ACP document from clinical staff (non-palliative care trained staff at hospitals I and II; specialist palliative care nurses at hospital III) after they had held ACP conversations. An anonymised copy of this ACP document was analysed. Documentation rates of patient and contact details were investigated, and documentation of current and future problems were analysed both quantitatively and qualitatively. One hundred sixty ACP documents were received between April 2013 and December 2014, with numbers increasing for each consecutive 3-month time period. Advance directives were frequently documented (82%). Documentation rates of current problems in the social (24%), psychological (27%) and spiritual (16%) domains were low compared to physical problems (85%) at hospital I and II, but consistently high (> 85%) at hospital III. Of 545 documented anticipated problems, 92% were physical or care related in nature, 2% social, 5% psychological, and < 1% spiritual. Half of the anticipated non-physical problems originated from hospital III. Hospital-initiated ACP documentation by a patient's clinical healthcare team is feasible: the number of documents received per time period increased throughout the study period, and overall, documentation rates were high. Nonetheless, symptom documentation predominantly regards physical symptoms. With the involvement of specialist palliative care nurses, psychological and spiritual problems are addressed more frequently. Whether palliative care education for non-palliative care experts will improve identification and documentation of non-physical problems remains to be investigated.

Bridging gaps in everyday life - a free-listing approach to explore the variety of activities performed by physiotherapists in specialized palliative care.

PubMed

Olsson Möller, U; Stigmar, K; Beck, I; Malmström, M; Rasmussen, B H

2018-01-29

A growing body of studies indicate benefits of physiotherapy for patients in palliative care, for symptom relief and wellbeing. Though physiotherapists are increasingly acknowledged as important members of palliative care teams, they are still an underutilized source and not fully recognized. The aim of this study was to explore the variety of activities described by physiotherapists in addressing the needs and problems of patients and their families in specialized palliative care settings. Using a free-listing approach, ten physiotherapists working in eight specialized palliative care settings in Sweden described as precisely and in as much detail as possible different activities in which patients and their families were included (directly or indirectly) during 10 days. The statements were entered into NVivo and analysed using qualitative content analysis. Statements containing more than one activity were categorized per activity. In total, 264 statements, containing 504 varied activities, were coded into seven categories: Counteracting a declining physical function; Informing, guiding and educating; Observing, assessing and evaluating; Attending to signs and symptoms; Listening, talking with and understanding; Caring for basic needs; and Organizing, planning and coordinating. In practice, however, the activities were intrinsically interwoven. The activities showed how physiotherapists aimed, through care for the body, to address patients' physical, psychological, social and existential needs, counteracting the decline in a patient's physical function and wellbeing. The activities also revealed a great variation, in relation not only to what they did, but also to their holistic and inseparable nature with regard to why, how, when, where, with whom and for whom the activities were carried out, which points towards a well-adopted person-centred palliative care approach. The study provides hands-on descriptions of how person-centred palliative care is integrated in physiotherapists' everyday activities. Physiotherapists in specialized palliative care help patients and families to bridge the gap between their real and ideal everyday life with the aim to maximize security, autonomy and wellbeing. The concrete examples included can be used in understanding the contribution of physiotherapists to the palliative care team and inform future research interventions and outcomes.

Assessing Emotional Suffering in Palliative Care: Use of a Structured Note Template to Improve Documentation.

PubMed

Lamba, Sangeeta; Berlin, Ana; Goett, Rebecca; Ponce, Christopher B; Holland, Bart; Walther, Susanne

2016-07-01

Documentation of the emotional or psychological needs of seriously ill patients receiving specialty palliative care is endorsed by the "Measuring What Matters" project as a quality performance metric and recommended for use by hospice and palliative care programs for program improvement. The aim of this study was to increase the proportion of inpatient palliative care team encounters in which emotional or psychological needs of patients and family members were documented and to qualitatively enrich the nature of this documentation. This is a mixed-methods retrospective study of 200 patient charts reviewed before and after implementation of a structured note template (SmartPhrase) for palliative care encounters. Patterns of documentation of emotional needs pre- and post-implementation were assessed quantitatively and qualitatively using thematic analysis. A total of 158 of 200 pre-intervention charts and 185 of 200 post-intervention charts included at least one note from the palliative care team. Documentation of emotional assessment increased after SmartPhrase implementation (63.9% [101 of 158] vs. 74.6% [138 of 185]; P < 0.03). Qualitative analysis revealed a post-intervention reduction in the use of generic phrases ("emotional support provided") and an increase in the breadth and depth of emotion-related documentation. A structured note template with a prompt for emotional assessment increases the overall quantity and richness of documentation related to patient and family emotions. However, this documentation remains mostly descriptive. Additional prompting for documentation of recommendations to address identified emotional needs, and the use of screening tools for depression and anxiety, when appropriate, may be necessary for clinically meaningful quality improvements in patient care. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Psychologists involved in cancer palliative care in Japan: A nationwide survey.

PubMed

Nakajima, Kasumi; Iwamitsu, Yumi; Matsubara, Mei; Oba, Akira; Hirai, Kei; Morita, Tatsuya; Kizawa, Yoshiyuki

2015-04-01

The aim of this study was to clarify, using a nationwide survey, what is perceived as necessary knowledge and skills for psychologists involved in cancer palliative care in Japan, the expectations of medical staff members, and the degree to which these expectations are met. We conducted a questionnaire survey of psychologists involved in cancer palliative care. A total of 419 psychologists from 403 facilities were asked to fill out the questionnaire and return it anonymously. Some 401 psychologists (89 males, 310 females, and 2 unspecified; mean age, 37.2 ± 9.5 years) responded about necessary knowledge and skills for psychologists working in cancer palliative care, the necessity for training, expectations at their current workplace, and the degree to which expectations are met. More than 90% of participants responded that many kinds of knowledge and skills related to the field of cancer palliative care are necessary. Over 80% of participants indicated a necessity for training related to these knowledge and skills. Although more than 50% (range, 50.1-85.8%) of participants responded that such services as "cooperation with medical staff within a hospital," "handling patients for whom psychological support would be beneficial," and "assessment of patients' mental state" were expected at their workplace, fewer than 60% (31.4-56.9%) responded that they actually performed these roles. Our results show that many psychologists in cancer palliative care feel unable to respond to the expectations at their current workplace and that they require more adequate knowledge and skills related to cancer palliative care to work effectively. No other nationwide surveys have generated this type of information in Japan, so we believe that the results of our study are uniquely important.

[Implementing the Cross-Disciplinary Subject Palliative Care - Lecture's Perspective].

PubMed

Isermeyer, Leonie; Ilse, Benjamin; Marx, Gabriella; Seidemann, Stephanie; Jünger, Jana; Nauck, Friedemann; Alt-Epping, Bernd

2017-11-01

Introduction  In 2009, palliative care was introduced as a mandatory subject in the undergraduate medical curriculum in Germany. Despite all efforts to integrate this subject into the curriculum, research suggests substantial differences and deficits in the quality of education between the medical schools. The aim of this research was to find out promoting as well as impedimental aspects of implementing palliative care in the medical training program. By this, a suitable framework in terms of content and structure for palliative care teaching should be extracted. Methods  We performed guided interviews with 15 of the in total 36 lecturers responsible for the implementation of palliative care teaching at their respective medical schools. We focused on content, design and methods of implementation within the palliative care curriculum. Data was evaluated by content analysis according to Meuser and Nagel. Results  We found that a lack of recognition of this subject within the medical faculties, coupled with entrenched structures of an already packed syllabus, were considered to be most relevant for the given heterogeneity in the implementation process. Deficits in personnel, financial and time resources also contributed to the perceived deficits. Faced with these difficulties, inner- and cross-faculty teamwork and support, extracurricular activities as well as external funds have proven to be important resources. Discussion  To promote the implementation process, medical faculties need established palliative care structures that meet the interests and needs of the students more effectively. Analysis of structural needs (for instance, the amount of apprenticeships and teachings units) would be an important step to prove political claims. Moreover, the development of suitable and resource-saving teaching and assessment methods should be promoted. © Georg Thieme Verlag KG Stuttgart · New York.

Home palliative care works: but how? A meta-ethnography of the experiences of patients and family caregivers.

PubMed

Sarmento, Vera P; Gysels, Marjolein; Higginson, Irene J; Gomes, Barbara

2017-12-01

To understand patients and family caregivers' experiences with home palliative care services, in order to identify, explore and integrate the key components of care that shape the experiences of service users. We performed a meta-ethnography of qualitative evidence following PRISMA recommendations for reporting systematic reviews. The studies were retrieved in 5 electronic databases (MEDLINE, EMBASE, PsycInfo, BNI, CINAHL) using 3 terms and its equivalents ('Palliative', 'Home care', 'Qualitative research') combined with 'AND', complemented with other search strategies. We included original qualitative studies exploring experiences of adult patients and/or their family caregivers (≥18 years) facing life-limiting diseases with palliative care needs, being cared for at home by specialist or intermediate home palliative care services. 28 papers reporting 19 studies were included, with 814 participants. Of these, 765 were family caregivers and 90% were affected by advanced cancer. According to participants' accounts, there are 2 overarching components of home palliative care: presence (24/7 availability and home visits) and competence (effective symptom control and skilful communication), contributing to meet the core need for security. Feeling secure is central to the benefits experienced with each component, allowing patients and family caregivers to focus on the dual process of living life and preparing death at home. Home palliative care teams improve patients and caregivers experience of security when facing life-limiting illnesses at home, by providing competent care and being present. These teams should therefore be widely available and empowered with the resources to be present and provide competent care. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.

Assessment of Cancer-Related Fatigue, Pain, and Quality of Life in Cancer Patients at Palliative Care Team Referral: A Multicenter Observational Study (JORTC PAL-09).

PubMed

Iwase, Satoru; Kawaguchi, Takashi; Tokoro, Akihiro; Yamada, Kimito; Kanai, Yoshiaki; Matsuda, Yoshinobu; Kashiwaya, Yuko; Okuma, Kae; Inada, Shuji; Ariyoshi, Keisuke; Miyaji, Tempei; Azuma, Kanako; Ishiki, Hiroto; Unezaki, Sakae; Yamaguchi, Takuhiro

2015-01-01

Cancer-related fatigue greatly influences quality of life in cancer patients; however, no specific treatments have been established for cancer-related fatigue, and at present, no medication has been approved in Japan. Systematic research using patient-reported outcome to examine symptoms, particularly fatigue, has not been conducted in palliative care settings in Japan. The objective was to evaluate fatigue, pain, and quality of life in cancer patients at the point of intervention by palliative care teams. Patients who were referred to palliative care teams at three institutions and met the inclusion criteria were invited to complete the Brief Fatigue Inventory, Brief Pain Inventory, and European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-Core 15-Palliative. Of 183 patients recruited, the majority (85.8%) were diagnosed with recurrence or metastasis. The largest group (42.6%) comprised lung cancer patients, of whom 67.2% had an Eastern Cooperative Oncology Group Performance Status of 0-1. The mean value for global health status/quality of life was 41.4, and the highest mean European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-Core 15-Palliative symptom item score was for pain (51.0). The mean global fatigue score was 4.1, and 9.8%, 30.6%, 38.7%, and 20.8% of patients' fatigue severity was classified as none (score 0), mild (1-3), moderate (4-6), and severe (7-10), respectively. Cancer-related fatigue, considered to occur more frequently in cancer patients, was successfully assessed using patient-reported outcomes with the Brief Fatigue Inventory for the first time in Japan. Results suggested that fatigue is potentially as problematic as pain, which is the main reason for palliative care.

The Blalock-Taussig shunt revisited: a contemporary experience.

PubMed

McKenzie, E Dean; Khan, Muhammad S; Samayoa, Andres X; Vener, Daniel S; Ishak, Youstina M; Santos, Alexia B; Heinle, Jeffrey S; Fraser, Charles D

2013-04-01

The Blalock-Taussig shunt (BTS) was introduced 68 years ago before open repair of cyanotic congenital heart disease (CHD) was possible. The originally described technique has undergone many modifications but remains an integral component of the management of cyanotic CHD. We report our contemporary, single institution experience with the BTS. We performed a retrospective review of all patients treated with a BTS from June 1995 to December 2011. There were 730 BTS performed in 712 patients; 727 (99.6%) by interposition graft (modified). The BTS was predominantly right-sided (n = 657, 90%). Median age and weight at palliation were 8 days (range 0 days to 18.5 years) and 3.2 kg (1.5 to 51 kg). Median hospital length of stay was 16 days (range 0 to 347 days). There were 241 (33%) BTS performed as initial palliation for ultimate 2-ventricle (2V) circulation, 471 (65%) as part of staged palliation for patients with functionally univentricular lesions (1V), 6 (1%) as a part of 1.5-ventricle palliation, and 12 (1%) for Ebstein's anomaly. There were 473 (65%) BTS placed via sternotomy and the most common site of BTS was the right subclavian to right pulmonary artery (PA; n = 452, 62%). Hospital mortality was higher for BTS in 1V patients (1V 15% vs 2V 3%, p < 0.0001). Overall, 536 (73%) patients were bridged to complete repair or the second stage of 1V palliation after a median duration of 6.5 months (0 days to 15.3 years). Multivariable regression showed that sternotomy approach, use of cardiopulmonary bypass, innominate artery-PA shunt, and diagnosis of Ebstein's were risk factors for in-hospital mortality (p < 0.05). Although the BTS remains an important component of the surgical treatment of cyanotic congenital heart disease, patients with single ventricle circulation still face significant ongoing risk of mortality. Copyright © 2013 American College of Surgeons. Published by Elsevier Inc. All rights reserved.

Pediatric Critical Care Transport as a Conduit to Terminal Extubation at Home: A Case Series.

PubMed

Noje, Corina; Bernier, Meghan L; Costabile, Philomena M; Klein, Bruce L; Kudchadkar, Sapna R

2017-01-01

To present our single-center's experience with three palliative critical care transports home from the PICU for terminal extubation. We performed a retrospective chart review of patients transported between January 1, 2012, and December 31, 2014. All cases were identified from our institutional pediatric transport database. Patients were terminally ill children unable to separate from mechanical ventilation in the PICU, who were transported home for terminal extubation and end-of-life care according to their families' wishes. Patients underwent palliative care transport home for terminal extubation. The rate of palliative care transports home for terminal extubation during the study period was 2.6 per 100 deaths. The patients were 7 months, 6 years, and 18 years old and had complex chronic conditions. The transfer process was protocolized. The families were approached by the PICU staff during multidisciplinary goals-of-care meetings. Parental expectations were clarified, and home hospice care was arranged pretransfer. All transports were performed by our pediatric critical care transport team, and all terminal extubations were performed by physicians. All patients had unstable medical conditions and urgent needs for transport to comply with the families' wishes for withdrawal of life support and death at home. As such, all three cases presented similar logistic challenges, including establishing do-not-resuscitate status pretransport, having limited time to organize the transport, and coordinating home palliative care services with available community resources. Although a relatively infrequent practice in pediatric critical care, transport home for terminal extubation represents a feasible alternative for families seeking out-of-hospital end-of-life care for their critically ill technology-dependent children. Our single-center experience supports the need for development of formal programs for end-of-life critical care transports to include patient screening tools, palliative care home discharge algorithms, transport protocols, and resource utilization and cost analyses.

Study protocol: evaluation of specialized outpatient palliative care (SOPC) in the German state of Hesse (ELSAH study) - work package II: palliative care for pediatric patients.

PubMed

Ulrich, Lisa-R; Gruber, Dania; Hach, Michaela; Boesner, Stefan; Haasenritter, Joerg; Kuss, Katrin; Seipp, Hannah; Gerlach, Ferdinand M; Erler, Antje

2018-01-05

In 2007, the European Association of Palliative Care (EAPC) provided a comprehensive set of recommendations and standards for the provision of adequate pediatric palliative care. A number of studies have shown deficits in pediatric palliative care compared to EAPC standards. In Germany, pediatric palliative care patients can be referred to specialized outpatient palliative care (SOPC) services, which are known to enhance quality of life, e.g. by avoiding hospitalization. However, current regulations for the provision of SOPC in Germany do not account for the different circumstances and needs of children and their families compared to adult palliative care patients. The "Evaluation of specialized outpatient palliative care (SOPC) in the German state of Hesse (ELSAH)" study aims to perform a needs assessment for pediatric patients (children, adolescents and young adults) receiving SOPC. This paper presents the study protocol for this assessment (work package II). The study uses a sequential mixed-methods study design with a focus on qualitative research. Data collection from professional and family caregivers and, as far as possible, pediatric patients, will involve both a written questionnaire based on European recommendations for pediatric palliative care, and semi-structured interviews. Additionally, professional caregivers will take part in focus group discussions and participatory observations. Interviews and focus groups will be tape- or video-recorded, transcribed verbatim and analyzed in accordance with the principles of grounded theory (interviews) and content analysis (focus groups). A structured field note template will be used to record notes taken during the participatory observations. Statistical Package for Social Sciences (SPSS, version 22 or higher) will be used for descriptive statistical analyses. The qualitative data analyses will be software-assisted by MAXQDA (version 12 or higher). This study will provide important information on what matters most to family caregivers and pediatric patients receiving SOPC. The results will add valuable knowledge to the criteria that distinguish SOPC for pediatric from SOPC for adult patients, and will provide an indication of how the German SOPC rule of procedure can be optimized to satisfy the special needs of pediatric patients. Internet Portal of the German Clinical Trials Register ( www.germanctr.de , DRKS-ID: DRKS00012431).

Palliative care and the intensive care nurses: feelings that endure.

PubMed

Silveira, Natyele Rippel; Nascimento, Eliane Regina Pereira do; Rosa, Luciana Martins da; Jung, Walnice; Martins, Sabrina Regina; Fontes, Moisés Dos Santos

2016-01-01

to know the feelings of nurses regarding palliative care in adult intensive care units. qualitative study, which adopted the theoretical framework of Social Representations, carried out with 30 nurses of the state of Santa Catarina included by Snowball sampling. Data were collected through semi-structured interviews conducted from April to August 2015, organized and analyzed through the Collective Subject Discourse. the results showed how central ideas are related to feelings of comfort, frustration, insecurity and anguish, in addition to the feeling that the professional training and performance are focused on the cure. the social representations of nurses regarding the feelings related to palliative care are represented mainly by negative feelings, probably as consequence of the context in which care is provided.

Adapting an Early Palliative Care Intervention to Family Caregivers of Persons With Advanced Cancer in the Rural Deep South: A Qualitative Formative Evaluation.

PubMed

Dionne-Odom, J Nicholas; Taylor, Richard; Rocque, Gabrielle; Chambless, Carol; Ramsey, Thomas; Azuero, Andres; Ivankova, Nataliya; Martin, Michelle Y; Bakitas, Marie A

2018-06-01

There is a scarcity of early palliative care interventions to support family caregivers of persons with advanced cancer living in the rural Southern U.S. The objective of this study was to adapt the content, format, and delivery of a six session, palliative care, telehealth intervention with monthly follow-up for rural family caregivers to enhance their own self-care and caregiving skills. Qualitative formative evaluation consisting of one-on-one, semistructured interviews with rural-dwelling persons with metastatic cancer (n = 18), their primary family caregiver (n = 20), and lay patient navigators (n = 26) were conducted to elicit feedback on a family caregiver intervention outline based on published evidence-based interventions. Transcribed interviews were analyzed using a thematic analysis approach. Coinvestigators reviewed and refined preliminary themes. Participants recommended that intervention topical content be flexible and has an adaptable format based on continuous needs assessment. Sessions should be 20 minutes long at minimum, and additional sessions should be offered if requested. Faith and spirituality is essential to address but should not be an overarching intervention theme. Content needs to be communicated in simple language. Intervention delivery via telephone is acceptable, but face-to-face contact is desired to establish relationships. Other Internet-based technologies (e.g., video-conferencing) could be helpful, but many rural dwellers may not be technology savvy or have Internet access. Most lay navigators believed they could lead the intervention with additional training, protocols for professional referral, and supervision by specialty-trained palliative care clinicians. A potentially scalable palliative care intervention is being adapted for family caregivers of rural-dwelling persons with advanced cancer and will undergo piloting in a small-scale randomized controlled trial. Copyright © 2018 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Listening to parents: The role of symptom perception in pediatric palliative home care.

PubMed

Vollenbroich, René; Borasio, Gian Domenico; Duroux, Ayda; Grasser, Monika; Brandstätter, Monika; Führer, Monika

2016-02-01

This study analyzes symptom perception by parents and healthcare professionals and the quality of symptom management in a pediatric palliative home care setting and identifies which factors contribute to a high quality of palliative and end-of-life care for children. In this retrospective, cross-sectional study, parents were surveyed at the earliest three months after their child's death. All children were cared for by a specialized home pediatric palliative care team that provides a 24/7 medical on-call service. Questionnaires assessed symptom prevalence and intensity during the child's last month of life as perceived by parents, symptom perception, and treatment by medical staff. The responses were correlated with essential palliative care outcome measures (e.g., satisfaction with the care provided, quality-of-life of affected children and parents, and peacefulness of the dying phase). Thirty-eight parent dyads participated (return rate 84%; 35% oncological disorders). According to parental report, dyspnea (61%) and pain (58%) were the dominant symptoms with an overall high symptom load (83%). Pain, agitation, and seizures could be treated more successfully than other symptoms. Successful symptom perception was achieved in most cases and predicted the quality of symptom treatment (R 2, 0.612). Concordant assessment of symptom severity between parents and healthcare professionals (HCPs) improved the satisfaction with the care provided (p = 0.037) as well as the parental quality-of-life (p = 0.041). Even in cases with unsuccessful symptom control, parents were very satisfied with the SHPPC team's care (median 10; numeric rating scale 0-10) and rated the child's death as highly peaceful (median 9). Significance of the results: The quality and the concordance of symptom perception between parents and HCPs essentially influence parental quality-of-life as well as parental satisfaction and constitute a predictive factor for the quality of symptom treatment and palliative care.

Palliative Care Professionals' Inner Life: Exploring the Relationships Among Awareness, Self-Care, and Compassion Satisfaction and Fatigue, Burnout, and Coping With Death.

PubMed

Sansó, Noemí; Galiana, Laura; Oliver, Amparo; Pascual, Antonio; Sinclair, Shane; Benito, Enric

2015-08-01

Professionals working in the landscape of death and dying frequently are exposed to existential issues, psychological challenges, and emotional distress associated with care at the end of life. Identifying factors that help professionals cope with frequent exposure to issues related to mortality could enhance palliative care providers' and patients' quality of life. To improve our understanding of the factors associated with professionals' inner life, through the assessment of an adapted version of Kearney and Kearney's awareness model of self-care. The main assumptions of the study were that competence in coping with death and awareness would be positively related to compassion satisfaction and negatively to compassion fatigue and burnout; moreover, participating in a specific training program aimed at facing suffering and death, and self-care would positively predict coping with death. A cross-sectional online survey of Spanish palliative care professionals was conducted through the member e-mail list of the Spanish Society of Palliative Care. A total of 387 professionals completed the survey, which included demographic data, and personal and professional scales on the mentioned constructs. Data fit reasonably well with the estimated model. Whereas the hypothesis relating spiritual training to coping with death was not supported by the data, all other aspects of the hypotheses were supported, namely self-care and awareness positively predicted professionals' competence in coping with death, and this, together with awareness, positively predicted compassion satisfaction and negatively predict compassion fatigue and burnout. The awareness-based model of self-care was successfully tested in a multidisciplinary sample of Spanish palliative care professionals. This research applies a quantitative evaluation of the model, providing evidence of a constellation of key variables for health professionals' quality of life, such as specific training, self-care, awareness and coping with death competency. Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Perception of Curability Among Advanced Cancer Patients: An International Collaborative Study.

PubMed

Yennurajalingam, Sriram; Rodrigues, Luis Fernando; Shamieh, Omar; Tricou, Colombe; Filbet, Marilène; Naing, Kyaw; Ramaswamy, Akhileshwaran; Perez-Cruz, Pedro Emilio; Bautista, Mary Jocelyn S; Bunge, Sofia; Muckaden, Mary Ann; Sewram, Vikash; Fakrooden, Sarah; Noguera-Tejedor, Antonio; Rao, Shobha S; Liu, Diane; Park, Minjeong; Williams, Janet L; Lu, Zhanni; Cantu, Hilda; Hui, David; Reddy, Suresh K; Bruera, Eduardo

2018-04-01

There are limited data on illness understanding and perception of cure among advanced cancer patients around the world. The aim of the study was to determine the frequency and factors associated with inaccurate perception of curability among advanced cancer patients receiving palliative care across the globe. Secondary analysis of a study to understand the core concepts in end-of-life care among advanced cancer patients receiving palliative care from 11 countries across the world. Advanced cancer patients were surveyed using a Patient Illness Understanding survey and Control Preference Scale. Descriptive statistics and multicovariate logistic regression analysis were performed. Fifty-five percent (763/1,390) of patients receiving palliative care inaccurately reported that their cancer is curable. The median age was 58, 55% were female, 59% were married or had a partner, 48% were Catholic, and 35% were college educated. Sixty-eight percent perceived that the goal of therapy was "to get rid of their cancer," and 47% perceived themselves as "seriously ill." Multicovariate logistic regression analysis shows that accurate perception of curability was associated with female gender (odds ratio [OR] 0.73, p  = .027), higher education (OR 0.37, p  < .0001), unemployment status (OR 0.69, p  = .02), and being from France (OR 0.26, p  < .0001) and South Africa (OR 0.52, p  = .034); inaccurate perception of curability was associated with better Karnofsky performance status (OR 1.02 per point, p  = .0005), and being from Philippines (OR 15.49, p  < .0001), Jordan (OR 8.43, p  < .0001), Brazil (OR 2.17, p  = .0037), and India (OR 2.47, p  = .039). Inaccurate perception of curability in advanced cancer patients is 55% and significantly differs by gender, education, performance status, employment status, and country of origin. Further studies are needed to develop strategies to reduce this misperception of curability in advanced cancer patients. The findings of this study indicate that inaccurate perception of curability among advanced cancer patients is 55%. Inaccurate perception of curability significantly differs by gender, education, performance status, employment status, and country of origin. There is great need to facilitate improved patient-physician communication so as to improve health care outcomes and patient satisfaction. © AlphaMed Press 2017.

Medical student knowledge of oncology and related disciplines: A targeted needs assessment

PubMed Central

Oskvarek, Jonathan; Braunstein, Steve; Farnan, Jeanne; Ferguson, Mark K.; Hahn, Olwen; Henderson, Tara; Hong, Susan; Levine, Stacie; Rosenberg, Carol A.; Golden, Daniel W.

2015-01-01

Background/Purpose Despite increasing numbers of cancer survivors, non-oncology physicians report discomfort and little training regarding oncologic and survivorship care. This pilot study assesses medical student comfort with medical oncology, surgical oncology, radiation oncology, hospice/palliative medicine, and survivorship care. Methods A survey was developed with input from specialists in various fields of oncologic care at a National Cancer Institute-designated comprehensive cancer center. The survey included respondent demographics, reports of experience with oncology, comfort ratings with oncologic care, and five clinical vignettes. Responses were yes/no, multiple choice, Likert scale, or free response. The survey was distributed via email to medical students (MS1-4) at two United States medical schools. Results/Findings The 105 respondents were 34 MS1s (32%), 15 MS2s and MD/PhDs (14%), 26 MS3s (25%), and 30 MS4s (29%). Medical oncology, surgical oncology, and hospice/palliative medicine demonstrated a significant trend for increased comfort from MS1 to MS4, but radiation oncology and survivorship care did not. MS3s and MS4s reported the least experience with survivorship care and radiation oncology. In the clinical vignettes, students performed the worst on the long-term chemotherapy toxicity and hospice/palliative medicine questions. Discussion Medical students report learning about components of oncologic care, but lack overall comfort with oncologic care. Medical students also fail to develop an increased self-assessed level of comfort with radiation oncology and survivorship care. These pilot results support development of a formalized multi-disciplinary medical school oncology curriculum at these two institutions. An expanded national survey is being developed to confirm these preliminary findings. PMID:26153490

Medical Student Knowledge of Oncology and Related Disciplines: a Targeted Needs Assessment.

PubMed

Oskvarek, Jonathan; Braunstein, Steve; Farnan, Jeanne; Ferguson, Mark K; Hahn, Olwen; Henderson, Tara; Hong, Susan; Levine, Stacie; Rosenberg, Carol A; Golden, Daniel W

2016-09-01

Despite increasing numbers of cancer survivors, non-oncology physicians report discomfort and little training regarding oncologic and survivorship care. This pilot study assesses medical student comfort with medical oncology, surgical oncology, radiation oncology, hospice/palliative medicine, and survivorship care. A survey was developed with input from specialists in various fields of oncologic care at a National Cancer Institute-designated comprehensive cancer center. The survey included respondent demographics, reports of experience with oncology, comfort ratings with oncologic care, and five clinical vignettes. Responses were yes/no, multiple choice, Likert scale, or free response. The survey was distributed via email to medical students (MS1-4) at two US medical schools. The 105 respondents were 34 MS1s (32 %), 15 MS2s and MD/PhDs (14 %), 26 MS3s (25 %), and 30 MS4s (29 %). Medical oncology, surgical oncology, and hospice/palliative medicine demonstrated a significant trend for increased comfort from MS1 to MS4, but radiation oncology and survivorship care did not. MS3s and MS4s reported the least experience with survivorship care and radiation oncology. In the clinical vignettes, students performed the worst on the long-term chemotherapy toxicity and hospice/palliative medicine questions. Medical students report learning about components of oncologic care, but lack overall comfort with oncologic care. Medical students also fail to develop an increased self-assessed level of comfort with radiation oncology and survivorship care. These pilot results support development of a formalized multidisciplinary medical school oncology curriculum at these two institutions. An expanded national survey is being developed to confirm these preliminary findings.

Correlates of objectively measured sedentary behavior in cancer patients with brain metastases: an application of the theory of planned behavior.

PubMed

Lowe, Sonya S; Danielson, Brita; Beaumont, Crystal; Watanabe, Sharon M; Baracos, Vickie E; Courneya, Kerry S

2015-07-01

The aim of this study is to examine the demographic, medical, and social-cognitive correlates of objectively measured sedentary behavior in advanced cancer patients with brain metastases. Advanced cancer patients diagnosed with brain metastases, aged 18 years or older, cognitively intact, and with palliative performance scale greater than 30%, were recruited from a Rapid Access Palliative Radiotherapy Program multidisciplinary brain metastases clinic. A cross-sectional survey interview assessed the theory of planned behavior variables and medical and demographic information. Participants wore activPAL™ (PAL Technologies Ltd, Glasgow, United Kingdom) accelerometers recording time spent supine, sitting, standing, and stepping during 7 days encompassing palliative whole brain radiotherapy treatments. Thirty-one patients were recruited. Correlates of median time spent supine or sitting in hours per day were instrumental attitude (i.e., perceived benefits) of physical activity (r = -0.42; p = 0.030) and affective attitude (i.e., perceived enjoyment) of physical activity (r = -0.43; p = 0.024). Moreover, participants who sat or were supine for greater than 20.7 h per day reported significantly lower instrumental attitude (M = 0.7; 95% CI = 0.0-1.4; p = 0.051) and affective attitude (M = 0.7; 95% CI = 0.0-1.4; p = 0.041). Finally, participants who were older than 60 years of age spent more time sitting or being supine. Instrumental attitude and affective attitude were the strongest correlates of objectively measured sedentary behavior. This information could inform intervention studies to increase physical activity in advanced cancer patients with brain metastases. Copyright © 2014 John Wiley & Sons, Ltd.

Palliative care knowledge and attitudes among oncology nurses in Qatar.

PubMed

Al-Kindi, Sadeer G; Zeinah, Ghaith F Abu; Hassan, Azza Adel

2014-08-01

Formal palliative care (PC) education is lacking in the middle eastern state of Qatar. This study was done to assess the need for PC education among oncology nurses in Qatar. In March 2012, a self-constructed questionnaire was distributed to 115 nurses at the Qatar National Center for Cancer Care and Research. A total of 115 nurses responded to the questionnaire. The majority (87.8%) were female. Although 60% had more than 10 years of work experience, only 31% had received formal training in PC, with only 6.1% having completed postgraduate training. The majority (63%) of responders attributed this issue to unavailability of PC courses rather than lack of time, interest, or financial issues. Currently, only 16.7% did not express interest in the field, with 56% showing some kind of interest. In terms of knowledge, 54% of the responders were familiar with the World Health Organization ladder for pain relief. Only 43.6% know about Palliative Performance Scale, and half of the nurses know the Edmonton Symptom Assessment System. Overall, 56% of the nurses indicated a need for training in more than 1 aspect. These aspects included training in care of the dying patients (14.6%), communication strategies (22%), caregiver support (10.6%), psychosocial care (15%), pain management (10.2%), other symptom management (13%), and other ethical/spiritual issues (14.2%). There is a clear deficiency in formal PC education among the nurses at the National Center for Cancer Care and Research, in Qatar. This is reflected by their lack of experience and exposure to PC and their mediocre knowledge in the field. This could be attributed to the fact that formal PC service was established only recently in Qatar (2008). Formal training courses in PC nursing are required. © The Author(s) 2013.

Joint-preserving palliative surgery using self-locking screws of intramedullary nail and percutaneous cementoplasty for proximal humeral metastasis in the advanced cancer patients.

PubMed

Park, Jong Woong; Kim, Yong-Il; Kang, Hyun Guy; Kim, June Hyuk; Kim, Han Soo

2018-05-15

We introduced a palliative joint-preserving surgery using proximal self-locking screws of intramedullary (IM) nail and percutaneous cementoplasty (PC) in patients with proximal humeral metastases, including the head and neck, and evaluated the outcome of the surgical method. Twenty-three patients (mean age = 63.0 ± 11.8 years, M:F = 14:9) had IM nailing with a self-locking screw system and PC for the treatment of humeral head and neck metastases. Usually, three proximal locking screws were inserted after IM nailing, and 20.9 ± 8.0 ml of polymethylmethacrylate (PMMA) bone cement was injected in the perimetal osteolytic area. Regional anesthesia with interscalene block was performed in 87.0% (20/23), and the duration of surgery (from anesthesia to awakening) was approximately 40-55 min. Red blood cell was not transfused intra- and/or postoperatively in 65.2% (15/23). The localized preoperative pain (visual analog scale (VAS), 8.2 ± 3.1) was gradually decreased at postoperative 1 week (VAS, 4.9 ± 2.1) and at 6 weeks (VAS, 2.9 ± 2.1) (P < 0.001). Among nine patients who underwent F-18-FDG PET/CT, the proximal humeral metastasis around PC showed improved, stable, and aggravated states in five (55.6%), three (33.3%), and one patient (11.1%), respectively. Meanwhile, 88.8% (8/9) of patients showed aggravation at the naive bone metastasis area. The selection of the self-locking screw type of the IM nail and PC was helpful in preventing fixation failure for joint-preserving palliative surgery in the proximal humeral metastasis.

Triggers in advanced neurological conditions: prediction and management of the terminal phase.

PubMed

Hussain, Jamilla; Adams, Debi; Allgar, Victoria; Campbell, Colin

2014-03-01

The challenge to provide a palliative care service for individuals with advanced neurological conditions is compounded by variability in disease trajectories and symptom profiles. The National End of Life Care Programme (2010) recommended seven 'triggers' for a palliative approach to care for patients with advanced neurological conditions. To establish the frequency of triggers in the palliative phase, and if they could be reduced to fewer components. Management of the terminal phase also was evaluated. Retrospective study of 62 consecutive patients under the care of a specialist palliative neurology service, who had died. Principle component analysis (PCA) was performed to establish the interrelationship between triggers. Frequency of triggers increased as each patient approached death. PCA found that four symptom components explained 76.8% of the variance. These represented: rapid physical decline; significant complex symptoms, including pain; infection in combination with cognitive impairment; and risk of aspiration. Median follow-up under the palliative care service was 336 days. In 56.5% of patients, the cause of death was pneumonia. The terminal phase was recognised in 72.6%. The duration of the terminal phase was 8.8 days on average, and the Liverpool Care of the dying Pathway was commenced in 33.9%. All carers were offered bereavement support. Referral criteria based on the triggers can facilitate appropriate and timely patient access to palliative care. The components deduced through PCA have face validity; however larger studies prospectively validating the triggers are required. Closer scrutiny of the terminal phase is necessary to optimise management.

Ethical validity of palliative sedation therapy: a multicenter, prospective, observational study conducted on specialized palliative care units in Japan.

PubMed

Morita, Tatsuya; Chinone, Yoshikazu; Ikenaga, Masayuki; Miyoshi, Makoto; Nakaho, Toshimichi; Nishitateno, Kenji; Sakonji, Mitsuaki; Shima, Yasuo; Suenaga, Kazuyuki; Takigawa, Chizuko; Kohara, Hiroyuki; Tani, Kazuhiko; Kawamura, Yasuo; Matsubara, Tatsuhiro; Watanabe, Akihiko; Yagi, Yasuo; Sasaki, Toru; Higuchi, Akiko; Kimura, Hideyuki; Abo, Hirofumi; Ozawa, Taketoshi; Kizawa, Yoshiyuki; Uchitomi, Yosuke

2005-10-01

Although palliative sedation therapy is often required in terminally ill cancer patients to achieve acceptable symptom relief, empirical data supporting the ethical validity of this approach are lacking. The primary aim of this study was to systematically investigate whether empirical evidence supports the ethical validity of sedation. This was a multicenter, prospective, observational study, which was conducted by 21 specialized palliative care units in Japan. One-hundred two consecutive adult cancer patients who received continuous deep sedation were enrolled. Continuous deep sedation was defined as the continuous use of sedative medications to relieve intolerable and refractory distress by achieving almost or complete unconsciousness until death. Prior to the study, we conceptualized the ethical validity of sedation from the viewpoints of physicians' intent, proportionality, and autonomy. Sedation was performed mainly with midazolam and phenobarbital. The initial doses of midazolam and phenobarbital were 1.5 mg/hour and 20 mg/hour, respectively. Main administration routes were continuous subcutaneous infusion and continuous intravenous infusion, and no rapid intravenous injection was reported. Of 59 patients who received artificial hydration or could intake adequate fluids/foods orally before sedation, 63% received artificial hydration therapy after sedation, and in the remaining patients, artificial hydration was withheld or withdrawn due to fluid retention symptoms and/or patient wishes. Of 66 patients who were able to verbally express themselves, 95% explicitly stated that symptoms were intolerable. The etiologies of the symptoms requiring sedation were primarily related to the progression of the underlying malignancy, such as cancer cachexia and organ failure, and standard palliative treatments had failed: steroids in 68% of patients with fatigue, opioids in 95% of patients with dyspnea, antisecretion medications in 75% of patients with bronchial secretion, antipsychotic medications in 74% of patients with delirium, and opioids in all patients with pain. On the basis of the Palliative Prognostic Index, 94% of the patients were predicted to die within 3 weeks. Before sedation, 67% of the patients expressed explicit wishes for sedation. In the remaining 34 patients, previous wishes for sedation were noted in 4 patients, and in the other 30 patients, the families were involved in the decision-making process. The chief reason for patient non-involvement in the decision making was cognitive impairment. These data indicate that palliative sedation therapy performed in specialized palliative care units in Japan generally followed the principles of double effect, proportionality, and autonomy.

(153)Sm-EDTMP for pain relief of bone metastases from prostate and breast cancer and other malignancies.

PubMed

Correa-González, Luis; Arteaga de Murphy, Consuelo; Pichardo-Romero, Pablo; Pedraza-López, Martha; Moreno-García, Claudia; Correa-Hernández, Luis

2014-05-01

Approximately 85% of patients with cancer suffer severe metastatic bone pain for which radionuclide therapy has been employed for pain palliation. We undertook this study to evaluate the pain relief effect of (153)Sm-EDTMP in Mexican patients with severe and painful bone metastases from mainly prostate, breast, and renal cancer and other malignancies. Patients (277) with intense sustained pain caused by bone metastases were referred to the Nuclear Medicine Department of the Oncology Hospital of the Mexican Social Security Institute. The patients had to have acceptable physical conditions, a previous positive (99m)Tc-MDP scan and blood values within normal range. (153)Sm-EDTMP was prepared at the Instituto Nacional de Investigaciones Nucleares (ININ) and 37 MBq/kg of body weight was injected intravenously. Pain palliation was evaluated with a visual analogue scale (VAS) and a verbal rating scale (VRS) before treatment and 3 and 12 weeks after treatment was started. The age interval of the patients was 24-92 years with a mean age of 64 ± 12 years. Mean values for hemoglobin, leukocyte and platelet counts did not statistically differ at zero time, 3 and 12 weeks after treatment. Pain intensity and relief assessment were statistically different: 9.1 ± 0.61 units initially; 4.2 ± 1.3 units 3 weeks later (54%) and after 12 weeks the pain diminished to 2.4 ± 1.4 units (74%) in the pain relief score scales. (153)Sm-EDTMP was readily available, safe and well tolerated. We conclude that (153)Sm-EDTMP was an adequate palliative agent and was the best option for our Mexican patients to relieve their severe metastatic bone pain. Copyright © 2014 IMSS. Published by Elsevier Inc. All rights reserved.

In-service documentation tools and statements on palliative sedation in Germany--do they meet the EAPC framework recommendations? A qualitative document analysis.

PubMed

Stiel, Stephanie; Heckel, Maria; Christensen, Britta; Ostgathe, Christoph; Klein, Carsten

2016-01-01

Numerous (inter-)national guidelines and frameworks have been developed to provide recommendations for the application of palliative sedation (PS). However, they are still not widely known, and large variations in PS clinical practice can be found. This study aims to collect and describe contents from documents used in clinical practice and to compare to what extent they match the European Association for Palliative Care (EAPC) framework recommendations. In a national survey on PS in Germany 2012, participants were asked to upload their in-service templates, assessment tools, specific protocols, and in-service statements for the application and documentation of PS. These documents are analyzed by using systematic structured content analysis. Three hundred seven content units of 52 provided documents were coded. The analyzed templates are very heterogeneous and also contain items not mentioned in the EAPC framework. Among 11 scales for the evaluation of sedation level, the Ramsey Sedation Score (n = 5) and the Richmond-Agitation-Sedation-Scale (n = 2) were found most often. For symptom assessment, three different scales were provided one time respectively. In all six PS statements, the common core elements were possible indications for PS, instructions on dose titration, patient monitoring, and care. Wide congruency exists for physical and psychological indications. Most documents coincide on midazolam as a preferred drug and basic monitoring in regular intervals. Aspects such as pre-emptive discussion of the potential role of sedation, informational needs of relatives, and care for the medical professionals are mentioned rarely. The analyzed templates do neglect some points of the EAPC recommendations. However, they expand the ten-point scheme of the framework in some details. The findings may facilitate the development of standardized consensus documentation and monitoring draft as an operational statement.

Hope in palliative care: from narcissism to self-transcendence in amyotrophic lateral sclerosis.

PubMed

Fanos, Joanna H; Gelinas, Deborah F; Foster, Reed S; Postone, Norman; Miller, Robert G

2008-04-01

The concept of hope in palliative care is an important and neglected area of research. Amyotrophic lateral sclerosis (ALS), a progressive degenerative motor neuron disease, offers an excellent opportunity to study this construct as the illness is virtually always fatal. Our research explored the meaning of hope in individuals with ALS. Sixteen patients (13 males and 3 females; mean age, 54) were interviewed during routine clinic visits to the Forbes Norris MDA/ALS Research Center at California Pacific Medical Center, San Francisco. The Forced Vital Capacity (FVC) Scale and the ALS Functional Rating Scale-Revised (ALSFRS-R) and a Hope Scale were administered. Themes of hope were identified and categorized. Hope categories included: (1) hope for a cure, (2) social support, (3) search for information, (4) spiritual beliefs, (5) limiting the impact, (6) adapting to changing capacities, (7) living in the moment, and (8) self-transcendence. The relationship between hope and the FVC value and individual as well as overall ALSFRS-R ratings were examined, and none were significant. Individuals varied in their capacity to cope with their illness unrelated to their physical ability. Themes ranged from a primary focus on the self to one of heightened concern for others, on continuum from narcissism to altruism. Respondents cited using a number of categories of hope (mean=5). Patients draw upon a variety of mechanisms to sustain hope when facing chronic disease, including hope for a cure, support from others, seeking information, spiritual beliefs, limiting the impact, adapting to changing capacities, living in the moment, and transcending the self. The palliative care team can play an important role by promoting discussions regarding hopefulness and its many forms in individuals with ALS.

The Optimal Timing of Stage-2-Palliation After the Norwood Operation.

PubMed

Meza, James M; Hickey, Edward; McCrindle, Brian; Blackstone, Eugene; Anderson, Brett; Overman, David; Kirklin, James K; Karamlou, Tara; Caldarone, Christopher; Kim, Richard; DeCampli, William; Jacobs, Marshall; Guleserian, Kristine; Jacobs, Jeffrey P; Jaquiss, Robert

2018-01-01

The effect of the timing of stage-2-palliation (S2P) on survival through single ventricle palliation remains unknown. This study investigated the optimal timing of S2P that minimizes pre-S2P attrition and maximizes post-S2P survival. The Congenital Heart Surgeons' Society's critical left ventricular outflow tract obstruction cohort was used. Survival analysis was performed using multiphase parametric hazard analysis. Separate risk factors for death after the Norwood and after S2P were identified. Based on the multivariable models, infants were stratified as low, intermediate, or high risk. Cumulative 2-year, post-Norwood survival was predicted. Optimal timing was determined using conditional survival analysis and plotted as 2-year, post-Norwood survival versus age at S2P. A Norwood operation was performed in 534 neonates from 21 institutions. The S2P was performed in 71%, at a median age of 5.1 months (IQR: 4.3 to 6.0), and 22% died after Norwood. By 5 years after S2P, 10% of infants had died. For low- and intermediate-risk infants, performing S2P after age 3 months was associated with 89% ± 3% and 82% ± 3% 2-year survival, respectively. Undergoing an interval cardiac reoperation or moderate-severe right ventricular dysfunction before S2P were high-risk features. Among high-risk infants, 2-year survival was 63% ± 5%, and even lower when S2P was performed before age 6 months. Performing S2P after age 3 months may optimize survival of low- and intermediate-risk infants. High-risk infants are unlikely to complete three-stage palliation, and early S2P may increase their risk of mortality. We infer that early referral for cardiac transplantation may increase their chance of survival. Copyright © 2018 The Society of Thoracic Surgeons. Published by Elsevier Inc. All rights reserved.

'The horse has bolted I suspect': A qualitative study of clinicians' attitudes and perceptions regarding palliative rehabilitation.

PubMed

Runacres, Fiona; Gregory, Heidi; Ugalde, Anna

2017-07-01

Palliative care patients have numerous rehabilitation needs that increase with disease progression. Palliative rehabilitation practices and perceptions of palliative medicine physicians towards the role of rehabilitation are largely unstudied. To explore palliative medicine physicians' attitudes and perceptions towards rehabilitation delivered within inpatient palliative care units. Qualitative study utilizing semi-structured interviews. Transcribed interviews were analysed using thematic analysis and major themes reported as results. Australian palliative medicine physicians working in inpatient palliative care units. In total, 20 physicians participated, representing specialist palliative care services across Australia. A total of 11 (55%) were males with an average of 12.5 years' experience working in palliative care. Most participants believed rehabilitation was an important aspect of palliative care; however, few felt adequate rehabilitation programmes were available. Participants varied in their concepts of what palliative rehabilitation entailed. The term rehabilitation was seen by some as helpful (fostering hope and aiding transitions) and by others to be misleading (creating unrealistic expectations). Four key themes emerged when describing physicians' attitudes, including (1) integrating rehabilitation within palliative care, (2) the intervention, (3) possibilities and (4) the message of rehabilitation. A lack of consensus exists among palliative medicine specialists regarding the definition and scope of palliative rehabilitation. Participants generally expressed a wish to offer enhanced rehabilitation interventions, however described resource and skill-set limitations as significant barriers. Further research is required to establish an evidence base for palliative rehabilitation, to support its acceptance and widespread integration within specialist inpatient palliative care.

Nursing workload for cancer patients under palliative care.

PubMed

Fuly, Patrícia Dos Santos Claro; Pires, Livia Márcia Vidal; Souza, Claudia Quinto Santos de; Oliveira, Beatriz Guitton Renaud Baptista de; Padilha, Katia Grillo

2016-01-01

To verify the nursing workload required by cancer patients undergoing palliative care and possible associations between the demographic and clinical characteristics of the patients and the nursing workload. This is a quantitative, cross-sectional, prospective study developed in the Connective Bone Tissue (TOC) clinics of Unit II of the Brazilian National Cancer Institute José Alencar Gomes da Silva with patients undergoing palliative care. Analysis of 197 measures of the Nursing Activities Score (NAS) revealed a mean score of 43.09% and an association between the performance status of patients undergoing palliative care and the mean NAS scores. The results of the study point to the need to resize the team of the unit. The NAS has proven to be a useful tool in oncologic clinical units for patients undergoing palliative care. Verificar a carga de trabalho de enfermagem requerida por pacientes com câncer sob cuidados paliativos e possíveis associações entre as características demográficas e clínicas dos pacientes e a carga de trabalho de enfermagem. Trata-se de um estudo de abordagem quantitativa, transversal, prospectivo, desenvolvido na clínica de Tecido Ósseo Conectivo (TOC) da Unidade II do Instituto Nacional de Câncer José Alencar Gomes da Silva, com pacientes em cuidados paliativos. A análise de 197 medidas do Nursing Activities Score (NAS) revelou um escore médio de 43,09% e uma associação entre a performance status de pacientes em cuidados paliativos com os valores médios do NAS. Os resultados do estudo apontam para a necessidade de redimensionamento da equipe da Unidade. O NAS mostrou-se um instrumento passível de utilização em unidades clínicas oncológicas, com pacientes em cuidados paliativos.

Patient-reported Symptom Burden, Rate of Completion of Palliative Radiotherapy and 30-day Mortality in Two Groups of Cancer Patients Managed With or Without Additional Care by a Multidisciplinary Palliative Care Team.

PubMed

Nieder, Carsten; Dalhaug, Astrid; Haukland, Ellinor; Engljähringer, Kirsten

2018-04-01

The aim of this study was to analyze differences in symptom burden, baseline and outcome parameters, including completion of palliative radiotherapy and 30-day mortality, between patients treated with palliative radiotherapy (RT) who were managed exclusively by regular oncology staff or a multidisciplinary palliative care team (MPCT) in addition. This was a retrospective single-institution analysis. Comparison of two groups of patients: MPCT versus none (n=36 and 65, respectively). All patients provided Edmonton symptom assessment system (ESAS) data before RT. The MPCT group included significantly more patients with reduced performance status. Furthermore, these patients had higher ESAS symptom scores, except for two items (dyspnea, sleep). The largest differences were observed for pain, fatigue, anxiety and depression. The significant difference in pain scores was also reflected in different opioid medication rates. Failure to complete radiotherapy was more common in the MPCT group (11 and 2%, respectively, p=0.05). Thirty-day mortality was different, too (28 and 2%, respectively, p=0.0001). The Kaplan-Meier survival curves were not significantly different (1-year survival rates 21 and 25%, respectively, p=0.27). The MPCT group was characterized by a higher symptom burden. Prognostic factors such as performance status were not balanced between the two groups. Despite this fact, actuarial overall survival was comparable. Given the high rate of 30-day mortality in the MPCT group, efforts to optimize criteria for initiation of radiotherapy are warranted. Copyright© 2018, International Institute of Anticancer Research (Dr. George J. Delinasios), All rights reserved.

Children’s palliative care now! Highlights from the second ICPCN conference on children’s palliative care, 18–21 May 2016, Buenos Aires, Argentina

PubMed Central

Downing, J; Kiman, R; Boucher, S; Nkosi, B; Steel, B; Marston, C; Lascar, E; Marston, J

2016-01-01

The International Children’s Palliative Care Network held its second international conference on children’s palliative care in Buenos Aires, Argentina, from the 18th–21st May 2016. The theme of the conference was ‘Children’s Palliative Care…. Now!’ emphasising the need for palliative care for children now, as the future will be too late for many of them. Six pre-conference workshops were held, addressing issues connected to pain assessment and management, adolescent palliative care, ethics and decision-making, developing programmes, the basics of children’s palliative care, and hidden aspects of children’s palliative care. The conference brought together 410 participants from 40 countries. Plenary, concurrent, and poster presentations covered issues around the status of children’s palliative care, genetics, perinatal and neonatal palliative care, the impact of children’s palliative care and the experiences of parents and volunteers, palliative care as a human right, education in children’s palliative care, managing complex pain in children, spiritual care and when to initiate palliative care. The ‘Big Debate’ explored issues around decision-making and end of life care in children, and gave participants the opportunity to explore a sensitive and thought provoking topic. At the end of the conference, delegates were urged to sign the Commitment of Buenos Aires which called for governments to implement the WHA resolution and ensure access to palliative care for neonates, children and their families, and also commits us as palliative care providers to share all that we can and collaborate with each other to achieve the global vision of palliative care for all children who need it. The conference highlighted the ongoing issues in children’s palliative care and participants were continually challenged to ensure that children can access palliative care NOW. PMID:27610193

Effects of online palliative care training on knowledge, attitude and satisfaction of primary care physicians.

PubMed

Pelayo, Marta; Cebrián, Diego; Areosa, Almudena; Agra, Yolanda; Izquierdo, Juan Vicente; Buendía, Félix

2011-05-23

The Spanish Palliative Care Strategy recommends an intermediate level of training for primary care physicians in order to provide them with knowledge and skills. Most of the training involves face-to-face courses but increasing pressures on physicians have resulted in fewer opportunities for provision of and attendance to this type of training. The effectiveness of on-line continuing medical education in terms of its impact on clinical practice has been scarcely studied. Its effect in relation to palliative care for primary care physicians is currently unknown, in terms of improvement in patient's quality of life and main caregiver's satisfaction. There is uncertainty too in terms of any potential benefits of asynchronous communication and interaction among on-line education participants, as well as of the effect of the learning process.The authors have developed an on-line educational model for palliative care which has been applied to primary care physicians in order to measure its effectiveness regarding knowledge, attitude towards palliative care, and physician's satisfaction in comparison with a control group.The effectiveness evaluation at 18 months and the impact on the quality of life of patients managed by the physicians, and the main caregiver's satisfaction will be addressed in a different paper. Randomized controlled educational trial to compared, on a first stage, the knowledge and attitude of primary care physicians regarding palliative care for advanced cancer patients, as well as satisfaction in those who followed an on-line palliative care training program with tutorship, using a Moodle Platform vs. traditional education. 169 physicians were included, 85 in the intervention group and 84 in the control group, of which five were excluded. Finally 82 participants per group were analyzed. There were significant differences in favor of the intervention group, in terms of knowledge (mean 4.6; CI 95%: 2.8 to 6.5 (p = 0.0001), scale range 0-33), confidence in symptom management (p = 0.02) and confidence in terms of communication (p = 0.038). Useful aspects were pointed out, as well as others to be improved in future applications. The satisfaction of the intervention group was high. The results of this study show that there was a significant increase of knowledge of 14%-20% and a significant increase in the perception of confidence in symptom management and communication in the intervention group in comparison with the control group that received traditional methods of education in palliative care or no educational activity at all. The overall satisfaction with the intervention was good-very good for most participants.This on-line educational model seems a useful tool for palliative care training in primary care physicians who have a high opinion about the integration of palliative care within primary care. The results of this study support the suggestion that learning effectiveness should be currently investigated comparing different Internet interventions, instead of Internet vs. no intervention.

Effects of online palliative care training on knowledge, attitude and satisfaction of primary care physicians

PubMed Central

2011-01-01

Background The Spanish Palliative Care Strategy recommends an intermediate level of training for primary care physicians in order to provide them with knowledge and skills. Most of the training involves face-to-face courses but increasing pressures on physicians have resulted in fewer opportunities for provision of and attendance to this type of training. The effectiveness of on-line continuing medical education in terms of its impact on clinical practice has been scarcely studied. Its effect in relation to palliative care for primary care physicians is currently unknown, in terms of improvement in patient's quality of life and main caregiver's satisfaction. There is uncertainty too in terms of any potential benefits of asynchronous communication and interaction among on-line education participants, as well as of the effect of the learning process. The authors have developed an on-line educational model for palliative care which has been applied to primary care physicians in order to measure its effectiveness regarding knowledge, attitude towards palliative care, and physician's satisfaction in comparison with a control group. The effectiveness evaluation at 18 months and the impact on the quality of life of patients managed by the physicians, and the main caregiver's satisfaction will be addressed in a different paper. Methods Randomized controlled educational trial to compared, on a first stage, the knowledge and attitude of primary care physicians regarding palliative care for advanced cancer patients, as well as satisfaction in those who followed an on-line palliative care training program with tutorship, using a Moodle Platform vs. traditional education. Results 169 physicians were included, 85 in the intervention group and 84 in the control group, of which five were excluded. Finally 82 participants per group were analyzed. There were significant differences in favor of the intervention group, in terms of knowledge (mean 4.6; CI 95%: 2.8 to 6.5 (p = 0.0001), scale range 0-33), confidence in symptom management (p = 0.02) and confidence in terms of communication (p = 0.038). Useful aspects were pointed out, as well as others to be improved in future applications. The satisfaction of the intervention group was high. Conclusions The results of this study show that there was a significant increase of knowledge of 14%-20% and a significant increase in the perception of confidence in symptom management and communication in the intervention group in comparison with the control group that received traditional methods of education in palliative care or no educational activity at all. The overall satisfaction with the intervention was good-very good for most participants. This on-line educational model seems a useful tool for palliative care training in primary care physicians who have a high opinion about the integration of palliative care within primary care. The results of this study support the suggestion that learning effectiveness should be currently investigated comparing different Internet interventions, instead of Internet vs. no intervention. Trial Registration German Clinical Trials Register DRKS00000694 PMID:21605381

Pediatric Palliative Care at a Glance

MedlinePlus

® ™ ® Pediatric Palliative Care at a Glance A child’s serious illness affects the entire family. Pediatric palliative (pal-lee-uh-tiv) care can support ... extra support, palliative care can help. What is pediatric palliative care? Pediatric palliative care is supportive care ...

The Impact of Pediatric Palliative Care Education on Medical Students' Knowledge and Attitudes

PubMed Central

Przysło, Łukasz; Kędzierska, Bogna; Stolarska, Małgorzata; Młynarski, Wojciech

2013-01-01

Purpose. Most undergraduate palliative care curricula omit pediatric palliative care (PPC) issues. Aim of the study was to evaluate the pilot education programme. Methods. All 391 students of Faculty of Medicine (FM) and 59 students of Division of Nursing (DN) were included in anonymous questionnaire study. Respondents were tested on their knowledge and attitude towards PPC issues before and at the end of the programme and were expected to evaluate the programme at the end. Results. For final analysis, authors qualified 375 double forms filled in correctly (320 FM and 55 DN). Before the programme, students' knowledge assessed on 0–100-point scale was low (FM: median: 43.35 points; 25%–75%: (40p–53.3p); DN: 26.7p; 13.3p–46.7p), and, in addition, there were differences (P < 0.001) between both faculties. Upon completion of the programme, significant increase of the level of knowledge in both faculties was noted (FM: 80p; 73.3–100; DN: 80p; 66.7p–80p). Participation in the programme changed declared attitudes towards some aspects of withholding of special procedures, euthanasia, and abortion. Both groups of students positively evaluated the programme. Conclusions. This study identifies medical students' limited knowledge of PPC. Educational intervention changes students' attitudes to the specific end-of-life issues. There is a need for palliative care curricula evaluation. PMID:24501581

Determinants of a hopeful attitude among family caregivers in a palliative care setting.

PubMed

Kim, Seon-Young; Kim, Jae-Min; Kim, Sung-Wan; Kang, Hee-Ju; Shin, Il-Seon; Shim, Hyun-Jeong; Cho, Sang-Hee; Chung, Ik-Joo; Yoon, Jin-Sang

2014-01-01

This study investigated the determinants of a hopeful attitude among family caregivers involved with palliative care. We investigated a broad range of factors for the patient-family dyad in a palliative care setting using a cross-sectional design. The patients' sociodemographic, clinical and psychological factors were evaluated, as well as caregiver-related sociodemographic and psychological factors, including depressive symptoms, burden, coping style and religiosity. Caregivers were divided into two groups based on a hopeful or nonhopeful attitude and assessed using the abbreviated version of the seven-item Beck Hopelessness Scale (BHS-7). Of 304 analyzed dyads, 210 (69.1%) caregivers showed a hopeful attitude, with a BHS-7 score of 0. The adjusted logistic regression analyses showed that caregivers' hopeful attitude was determined by only their psychological status: less depressive symptoms [odds ratio (OR), 0.86; 95% confidence interval (CI), 0.83-0.90], active coping strategy (OR, 1.12; 95% CI, 1.07-1.18) and lower burden (OR, 0.93; 95% CI, 0.88-0.99). In a subpopulation analysis (n=200), higher religiosity was a significantly associated factor. Healthcare providers need to pay attention to the psychological vulnerability of caregivers to encourage a hopeful attitude. Additional studies of longitudinal design for hopeful attitude throughout the trajectory of palliative care are necessary. Copyright © 2014 Elsevier Inc. All rights reserved.

How are physicians delivering palliative care? A population-based retrospective cohort study describing the mix of generalist and specialist palliative care models in the last year of life.

PubMed

Brown, Catherine Rl; Hsu, Amy T; Kendall, Claire; Marshall, Denise; Pereira, Jose; Prentice, Michelle; Rice, Jill; Seow, Hsien-Yeang; Smith, Glenys A; Ying, Irene; Tanuseputro, Peter

2018-06-01

To enable coordinated palliative care delivery, all clinicians should have basic palliative care skill sets ('generalist palliative care'). Specialists should have skills for managing complex and difficult cases ('specialist palliative care') and co-exist to support generalists through consultation care and transfer of care. Little information exists about the actual mixes of generalist and specialist palliative care. To describe the models of physician-based palliative care services delivered to patients in the last 12 months of life. This is a population-based retrospective cohort study using linked health care administrative data. Physicians providing palliative care services to a decedent cohort in Ontario, Canada. The decedent cohort consisted of all adults (18+ years) who died in Ontario, Canada between April 2011 and March 2015 ( n = 361,951). We describe four major models of palliative care services: (1) 53.0% of decedents received no physician-based palliative care, (2) 21.2% received only generalist palliative care, (3) 14.7% received consultation palliative care (i.e. care from both specialists and generalists), and (4) 11.1% received only specialist palliative care. Among physicians providing palliative care ( n = 11,006), 95.3% had a generalist palliative care focus and 4.7% a specialist focus; 74.2% were trained as family physicians. We examined how often a coordinated palliative care model is delivered to a large decedent cohort and identified that few actually received consultation care. The majority of care, in both the palliative care generalist and specialist models, was delivered by family physicians. Further research should evaluate how different models of care impact patient outcomes and costs.

Development of a health information technology-based data system in community-based hospice and palliative care.

PubMed

Abernethy, Amy P; Wheeler, Jane L; Bull, Janet

2011-05-01

Few hospice and palliative care organizations use health information technology (HIT) for data collection and management; the feasibility and utility of a HIT-based approach in this multi-faceted, interdisciplinary context is unclear. To develop a HIT-based data infrastructure that serves multiple hospice and palliative care sites, meeting clinical and administrative needs with data, technical, and analytic support. Through a multi-site academic/community partnership, a data infrastructure was collaboratively developed, pilot-tested at a community-based site, refined, and demonstrated for data collection and preliminary analysis. Additional sites, which participated in system development, became prepared to contribute data to the growing aggregate database. Electronic data collection proved feasible in community-based hospice and palliative care. The project highlighted "success factors" for implementing HIT in this field: engagement of site-based project "champions" to promote the system from within; involvement of stakeholders at all levels of the organization, to promote culture change and buy-in; attention to local needs (e.g., data for quality reporting) and requirements (e.g., affordable cost, efficiency); consideration of practical factors (e.g., potential to interfere with clinical flow); provision of adequate software, technical, analytic, and statistical support; availability of flexible HIT options (e.g., different data-collection platforms); and adoption of a consortium approach in which sites can support one another, learn from each others' experiences, pool data, and benefit from economies of scale. In hospice and palliative care, HIT-based data collection/management has potential to generate better understanding of populations and outcomes, support quality assessment/quality improvement, and prepare sites to participate in research. Copyright © 2011 American Journal of Preventive Medicine. Published by Elsevier Inc. All rights reserved.

What Impact Do Chaplains Have? A Pilot Study of Spiritual AIM for Advanced Cancer Patients in Outpatient Palliative Care

PubMed Central

Kestenbaum, Allison; Shields, Michele; James, Jennifer; Hocker, Will; Morgan, Stefana; Karve, Shweta; Rabow, Michael W.; Dunn, Laura B.

2017-01-01

Context Spiritual care is integral to quality palliative care. Although chaplains are uniquely trained to provide spiritual care, studies evaluating chaplains’ work in palliative care are scarce. Objectives The goals of this pre-post study, conducted among patients with advanced cancer receiving outpatient palliative care, were to evaluate the feasibility and acceptability of chaplain-delivered spiritual care, utilizing the Spiritual Assessment and Intervention Model (“Spiritual AIM”); and to gather pilot data on Spiritual AIM’s effects on spiritual well-being, religious and cancer-specific coping, and physical and psychological symptoms. Methods Patients with advanced cancer (n=31) who were receiving outpatient palliative care were assigned based on chaplains’ and patients’ outpatient schedules, to one of three professional chaplains for three individual Spiritual AIM sessions, conducted over the course of approximately six to eight weeks. Patients completed the following measures at baseline and post-intervention: Edmonton Symptom Assessment Scale (ESAS), Steinhauser spirituality, Brief Religious Coping (Brief RCOPE), Functional Assessment of Chronic Illness Therapy—Spiritual (FACIT-Sp-12), Mini-Mental Adjustment to Cancer (Mini-MAC), Patient Dignity Inventory, Center for Epidemiological Studies – Depression (CES-D, 10-item), and Spielberger State Anxiety Inventory (STAI-S). Results From baseline to post-Spiritual AIM, significant increases were found on the FACIT-Sp-12 Faith subscale, the Mini-MAC Fighting Spirit subscale, and Mini-MAC Adaptive Coping factor. Two trends were observed, i.e., an increase in Positive religious coping and an increase in Fatalism (a subscale of the Mini-MAC). Conclusion Spiritual AIM, a brief chaplain-led intervention, holds potential to address spiritual needs, as well as religious and general coping in patients with serious illnesses. PMID:28736103

The role of a palliative care intervention in moderating the relationship between depression and survival among individuals with advanced cancer.

PubMed

Prescott, Anna T; Hull, Jay G; Dionne-Odom, J Nicholas; Tosteson, Tor D; Lyons, Kathleen Doyle; Li, Zhigang; Li, Zhongze; Dragnev, Konstantin H; Hegel, Mark T; Steinhauser, Karen E; Ahles, Tim A; Bakitas, Marie A

2017-12-01

Randomized controlled trials (RCTs) of early palliative care interventions in advanced cancer have positively impacted patient survival, yet the mechanisms remain unknown. This secondary analysis of 2 RCTs assessed whether an early palliative care intervention moderates the relationship between depressive symptoms and survival. The relationships among mood, survival, and early palliative care intervention were studied among 529 advanced cancer patients who participated in 2 RCTs. The first (N = 322) compared intervention versus usual care. The second (N = 207) compared early versus delayed intervention (12 weeks after enrollment). The interventions included an in-person consultation, weekly nurse coach-facilitated phone sessions, and monthly follow-up. Mood was measured using the Center for Epidemiologic Studies-Depression (CES-D) scale. Cox proportional hazard analyses were used to examine the effects of baseline CES-D scores, the intervention, and their interaction on mortality risk while controlling for demographic variables, cancer site, and illness severity. The combined sample was 56% male (M = 64.7 years). Higher baseline CES-D scores were significantly associated with greater mortality risk (hazard ratio [HR] = 1.042, 95% confidence interval [CI] [1.017, 1.067], p = .001). However, participants with higher CES-D scores who received the intervention had a lower mortality risk (HR = .963, CI [0.933, 0.993], p = .018) even when controlling for demographics, cancer site, and illness-related variables. This study is the first to demonstrate that patients with advanced cancer who also have depressive symptoms benefit the most from early palliative care. Future research should be devoted to exploring the mechanisms responsible for these relationships. (PsycINFO Database Record (c) 2017 APA, all rights reserved).

Staff preparedness for providing palliative and end-of-life care in long-term care homes: Instrument development and validation.

PubMed

Chan, Helen Yl; Chun, Gloria Km; Man, C W; Leung, Edward Mf

2018-05-01

Although much attention has been on integrating the palliative care approach into services of long-term care homes for older people living with frailty and progressive diseases, little is known about the staff preparedness for these new initiatives. The present study aimed to develop and test the psychometric properties of an instrument for measuring care home staff preparedness in providing palliative and end-of-life care. A 16-item instrument, covering perceived knowledge, skill and psychological readiness, was developed. A total of 247 staff members of different ranks from four care homes participated in the study. Exploratory factor analysis using the principal component analysis extraction method with varimax rotation was carried out for initial validation. Known group comparison was carried out to examine its discriminant validity. Reliability of the instrument was assessed based on test-retest reliability of a subsample of 20 participants and the Cronbach's alpha of the items. Exploratory factor analysis showed that the instrument yielded a three-factor solution, which cumulatively accounted for 68.5% of the total variance. Three subscales, namely, willingness, capability and resilience, showed high internal consistency and test-retest reliability. It also showed good discriminant validity between staff members of professional and non-professional groups. This is a brief, valid and reliable scale for measuring care home staff preparedness for providing palliative and end-of-life care. It can be used to identify their concerns and training needs in providing palliative and end-of-life care, and as an outcome measure to evaluate the effects of interventional studies for capacity building in this regard. Geriatr Gerontol Int 2018; 18: 745-749. © 2018 Japan Geriatrics Society.

Capturing the Palliative Home Care Experience From Bereaved Caregivers Through Qualitative Survey Data: Toward Informing Quality Improvement.

PubMed

Bainbridge, Daryl; Bryant, Deanna; Seow, Hsien

2017-02-01

Measuring palliative care experience using patient-reported outcomes is becoming important for assessing and improving quality, although most validated outcome tools solely use scaled questions. We analyzed open-text survey responses from bereaved caregivers to identify strengths and weaknesses in the quality of end-of-life care services and to assess the usefulness of qualitative survey data for quality improvement. This was a retrospective observational study involving bereaved caregivers of decedents who had received palliative home care services in one of six health care regions in Ontario, Canada. Using the U.K.'s validated Views of Informal Carers-Evaluation of Services survey, respondents were asked what was good and what was bad about the services provided in the last three months of life as separate open-text questions. A qualitative constant comparison approach was used to derive themes from the responses. Among 330 caregivers who completed the survey, 271 (82%) caregivers responded to the open-text questions: 93% of those commented on something that was good about care and 55% on something that was bad. The care experiences were generally positive, with the exception of specific individuals or settings that were perceived as adverse. The qualitative data were more informative about deficiencies in care compared with the quantitative data. The qualitative survey data in this study provided key recommendations toward making care more responsive to the needs of dying patients and their families. Capturing the narrative responses of bereaved caregivers is feasible and informative for palliative care program development. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Palliative care content on cancer center websites.

PubMed

Vater, Laura B; Rebesco, Gina; Schenker, Yael; Torke, Alexia M; Gramelspacher, Gregory

2018-03-01

Professional guidelines recommend that palliative care begin early in advanced cancer management, yet integration of palliative and cancer care remains suboptimal. Cancer centers may miss opportunities to provide palliative care information online. In this study, we described the palliative care content on cancer center websites. We conducted a systematic content analysis of 62 National Cancer Institute- (NCI) designated cancer center websites. We assessed the content of center homepages and analyzed search results using the terms palliative care, supportive care, and hospice. For palliative and supportive care webpages, we assessed services offered and language used to describe care. Two researchers analyzed all websites using a standardized coding manual. Kappa values ranged from 0.78 to 1. NCI-designated cancer center homepages presented information about cancer-directed therapy (61%) more frequently than palliative care (5%). Ten percent of cancer centers had no webpage with palliative care information for patients. Among centers with information for patients, the majority (96%) defined palliative or supportive care, but 30% did not discuss delivery of palliative care alongside curative treatment, and 14% did not mention provision of care early in the disease process. Cancer center homepages rarely mention palliative care services. While the majority of centers have webpages with palliative care content, they sometimes omit information about early use of care. Improving accessibility of palliative care information and increasing emphasis on early provision of services may improve integration of palliative and cancer care.

Assessment of a Hospital Palliative Care Unit (HPCU) for Cancer Patients; A Conceptual Framework.

PubMed

Rouhollahi, Mohammad Reza; Saghafinia, Masoud; Zandehdel, Kazem; Motlagh, Ali Ghanbari; Kazemian, Ali; Mohagheghi, Mohammad Ali; Tahmasebi, Mamak

2015-01-01

The first hospital palliative care unit (HPCU) in Iran (FARS-HPCU) has been established in 2008 in the Cancer Institute, which is the largest referral cancer center in the country. We attempted to assess the performance of the HPCU based on a comprehensive conceptual framework. The main aim of this study was to develop a conceptual framework for assessment of the HPCU performances through designing a value chain in line with the goals and the main processes (core and support). We collected data from a variety of sources, including international guidelines, international best practices, and expert opinions in the country and compared them with national policies and priorities. We also took into consideration the trend of the HPCU development in the Cancer Institute of Iran. Through benchmarking the gap area with the performance standards, some recommendations for better outcome are proposed. The framework for performance assessment consisted of 154 process indicators (PIs), based on which the main stakeholders of the HPCU (including staff, patients, and families) offered their scoring. The outcome revealed the state of the processes as well as the gaps. Despite a significant improvement in many processes and indicators, more development in the comprehensive and integrative aspects of FARS-HPCU performance is required. Consideration of all supportive and palliative requirements of the patients through interdisciplinary and collaborative approaches is recommended.

Palliative balloon dilation of pulmonic stenosis in a dog with tetralogy of Fallot.

PubMed

Weder, C; Ames, M; Kellihan, H; Bright, J; Orton, C

2016-09-01

A 6-month-old Beagle with tetralogy of Fallot underwent balloon valvuloplasty of the pulmonary valve. Balloon valvuloplasty was successful and resulted in palliation of clinical signs and an improved quality of life for approximately 9 months. After 9 months, the dog became symptomatic and a modified Blalock-Taussig shunt procedure was successfully performed. Based on this report, balloon valvuloplasty in dogs with tetralogy of Fallot appears to be a feasible technique that may result in improvement of clinical signs. In addition, it may allow for the delay of the more invasive surgical palliation and provide time for weight gain and development of the pulmonary vascular bed for greater ease of surgical shunt creation. Copyright © 2016 Elsevier B.V. All rights reserved.

Validity, reliability and responsiveness to change of the Italian palliative care outcome scale: a multicenter study of advanced cancer patients.

PubMed

Costantini, Massimo; Rabitti, Elisa; Beccaro, Monica; Fusco, Flavio; Peruselli, Carlo; La Ciura, Pietro; Valle, Alessandro; Suriani, Cinzia; Berardi, Maria Alejandra; Valenti, Danila; Mosso, Felicita; Morino, Piero; Zaninetta, Giovanni; Tubere, Giorgio; Piazza, Massimo; Sofia, Michele; Di Leo, Silvia; Higginson, Irene J

2016-02-26

There is an increasing requirement to assess outcomes, but few measures have been tested for advanced medical illness. We aimed to test the validity, reliability and responsiveness of the Palliative care Outcome Scale (POS), and to analyse predictors of change after the transition to palliative care. Phase 1: multicentre, mixed method study comprising cognitive and qualitative interviews with patients and staff, cultural refinement and adaption. Phase 2: consecutive cancer patients on admission to 8 inpatient hospices and 7 home-based teams were asked to complete the POS, the EORTC QLQ-C15-PAL and the FACIT-Sp (T0), to assess internal consistency, convergent and divergent validity. After 6 days (T1) patients and staff completed the POS to assess responsiveness to change (T1-T0), and agreement between self-assessed POS and POS completed by the staff. Finally, we asked hospices an assessment 24-48 h after T1 to assess its reliability (test re-test analysis). Phase I: 209 completed POS questionnaires and 29 cognitive interviews were assessed, revisions made and one item substituted. Phase II: 295 consecutive patients admitted to 15 PCTs were approached, 175 (59.3 %) were eligible, and 150 (85.7 %) consented. Consent was limited by the severity of illness in 40 % patients. We found good convergent validity, with strong and moderate correlations (r ranged 0.5-0.8) between similar items from the POS, the QLQ-C15-PAL and the FACIT-Sp. As hypothesised, the physical function subscale of QLQ-C15-PAL was not correlated with any POS item (r ranged -0.16-0.02). We found acceptable to good test re-test reliability in both versions for 6 items. We found significant clinical improvements during the first week of palliative care in 7/10 items assessed-pain, other symptoms, patient and family anxiety, information, feeling at peace and wasted time. Both the patient self-assessed and professional POS versions are valid and with an acceptable internal consistency. POS detected significant clinical improvements during palliative care, at a time when patients are usually expected to deteriorate. These results suggest that there is room for substantial improvement in the management of patients with advanced disease, across all key domains-symptoms, psychological, information, social and spiritual.

A qualitative study examining the sustainability of shared care in the delivery of palliative care services in the community

PubMed Central

2013-01-01

Background This paper focuses on the sustainability of existing palliative care teams that provide home-based care in a shared care model. For the purposes of this study, following Evashwick and Ory (2003), sustainability is understood and approached as the ability to continue the program over time. Understanding factors that influence the sustainability of teams and ways to mitigate these factors is paramount to improving the longevity and quality of service delivery models of this kind. Methods Using qualitative data collected in interviews, the aim of this study is twofold: (1) to explore the factors that affect the sustainability of the teams at three different scales, and; (2) based on the results of this study, to propose a set of recommendations that will contribute to the sustainability of PC teams. Results Sustainability was conceptualized from two angles: internal and external. An overview of external sustainability was provided and the merging of data from all participant groups showed that the sustainability of teams was largely dependent on actors and organizations at the local (community), regional (Local Health Integration Network or LHIN) and provincial scales. The three scales are not self-contained or singular entities but rather are connected. Integration and collaboration within and between scales is necessary, as community capacity will inevitably reach its threshold without support of the province, which provides funding to the LHIN. While the community continues to advocate for the teams, in the long-term, they will need additional supports from the LHIN and province. The province has the authority and capacity to engrain its support for teams through a formal strategy. The recommendations are presented based on scale to better illustrate how actors and organizations could move forward. Conclusions This study may inform program and policy specific to strategic ways to improve the provision of team-based palliative home care using a shared care model, while simultaneously providing direction for team-based program delivery and sustainability for other jurisdictions. PMID:23984638

Palliative Care Development in Mongolia.

PubMed

Davaasuren, Odontuya; Ferris, Frank D

2018-02-01

Since the year 2000, Mongolia has established the foundation measures for a national palliative care program and has made several significant achievements. Systematic reviews and observational studies on palliative care development in Mongolia have taken place over the past 16 years. Mongolia began palliative care development in 2000 with the creation of the Mongolian Palliative Care Society and the Palliative Care Department. Palliative care is included in the Mongolia's Health Law, Health Insurance Law, Social Welfare Law, National Cancer Control Program, and the National Program for Non-Communicable Diseases, and has approved Palliative Care Standards and Pain Management Guidelines. Palliative care education is included in the undergraduate and postgraduate curriculum in all medical universities. Six hospice units in Ulaanbaatar have 50 beds; each of the nine districts and all 21 provinces have up to four to five palliative beds, and there are 36 palliative care units, for a total 190 beds for three million people. In 2014, a pediatric palliative care inpatient unit was established with five beds. Essential drugs for palliative care have been available in Mongolia since 2015. The pharmaceutical company IVCO produces morphine, codeine, pethidine, and oxycodone in Ulaanbaatar. Mongolia has made real progress in integrating palliative care into the health system. Copyright © 2017. Published by Elsevier Inc.

Prevalence and risk factors of depressive symptoms in a Canadian palliative home care population: a cross-sectional study

PubMed Central

2014-01-01

Background Depression in palliative care patients is important because of its intrinsic burden and association with elevated physical symptoms, reduced immunity and increased mortality risk. Identifying risk factors associated with depression can enable clinicians to more readily diagnose it, which is important since depression is treatable. The purpose of this cross-sectional study was to determine the prevalence of depressive symptoms and risk factors associated with them in a large sample of palliative home care patients. Methods The data come from interRAI Palliative Care assessments completed between 2006 and 2012. The sample (n = 5144) consists of adults residing in Ontario (Canada), receiving home care services, classified as palliative, and not experiencing significant cognitive impairment. Logistic regression identified the risk factors associated with depressive symptoms. The dependent variable was the Depression Rating Scale (DRS) and the independent variables were functional indicators from the interRAI assessment and other variables identified in the literature. We examined the results of the complete case and multiple imputation analyses, and found them to be similar. Results The prevalence of depressive symptoms was 9.8%. The risk factors associated with depressive symptoms were (pooled estimates, multiple imputation): low life satisfaction (OR = 3.01 [CI = 2.37-3.82]), severe and moderate sleep disorders (2.56 [2.05-3.19] and 1.56 [1.18-2.06]), health instability (2.12 [1.42-3.18]), caregiver distress 2.01 [1.62-2.51]), daily pain (1.73 [1.35-2.22]), cognitive impairment (1.45 [1.13-1.87]), being female (1.37 [1.11-1.68]), and gastrointestinal symptoms (1.27 [1.03-1.55]). Life satisfaction mediated the effect of prognostic awareness on depressive symptoms. Conclusions The prevalence of depressive symptoms in our study was close to the median of 10-20% reported in the palliative care literature, suggesting they are present but by no means inevitable in palliative patients. Most of the factors associated with depressive symptoms in our study are amenable to clinical intervention and often targeted in palliative care programs. Designing interventions to address them can be challenging, however, requiring careful attention to patient preferences, the spectrum of comorbid conditions they face, and their social supports. Life satisfaction was one of the strongest factors associated with depressive symptoms in our study, and is likely to be among the most challenging to address. PMID:24636452

[Palliative care and end-of-life patients in emergency situations. Recommendations on optimization of out-patient care].

PubMed

Wiese, C H R; Vagts, D A; Kampa, U; Pfeiffer, G; Grom, I-U; Gerth, M A; Graf, B M; Zausig, Y A

2011-02-01

At the end of life acute exacerbations of medical symptoms (e.g. dyspnea) in palliative care patients often result in emergency medical services being alerted. The goals of this study were to discuss cooperation between emergency medical and palliative care structures to optimize the quality of care in emergencies involving palliative care patients. For data collection an open discussion of the main topics by experts in palliative and emergency medical care was employed. Main outcome measures and recommendations included responses regarding current practices related to expert opinions and international literature sources. As the essential points of consensus the following recommendations for optimization of care were named: (1) integration of palliative care in the emergency medicine curricula for pre-hospital emergency physicians and paramedics, (2) development of outpatient palliative care, (3) integration of palliative care teams into emergency medical structures, (4) cooperation between palliative and emergency medical care, (5) integration of crisis intervention into outpatient palliative emergency medical care, (6) provision of emergency plans and emergency medical boxes, (7) provision of palliative crisis cards and do not attempt resuscitation (DNAR) orders, (8) psychosocial aspects concerning palliative emergencies and (9) definition of palliative patients and their special situation by the physician responsible for prior treatment. Prehospital emergency physicians are confronted with emergencies in palliative care patients every day. In the treatment of these emergencies there are potentially serious conflicts due to the different therapeutic concepts of palliative medical care and emergency medical services. This study demonstrates that there is a need for regulated criteria for the therapy of palliative patients and patients at the end of life in emergency situations. Overall, more clinical investigations concerning end-of-life care and unresponsive palliative care patients in emergency medical situations are necessary.

The medical necessity for medicinal cannabis: prospective, observational study evaluating the treatment in cancer patients on supportive or palliative care.

PubMed

Bar-Sela, Gil; Vorobeichik, Marina; Drawsheh, Saher; Omer, Anat; Goldberg, Victoria; Muller, Ella

2013-01-01

Background. Cancer patients using cannabis report better influence from the plant extract than from synthetic products. However, almost all the research conducted to date has been performed with synthetic products. We followed patients with a medicinal cannabis license to evaluate the advantages and side effects of using cannabis by cancer patients. Methods. The study included two interviews based on questionnaires regarding symptoms and side effects, the first held on the day the license was issued and the second 6-8 weeks later. Cancer symptoms and cannabis side effects were documented on scales from 0 to 4 following the CTCAE. The distress thermometer was used also. Results. Of the 211 patients who had a first interview, only 131 had the second interview, 25 of whom stopped treatment after less than a week. All cancer or anticancer treatment-related symptoms showed significant improvement (P < 0.001). No significant side effects except for memory lessening in patients with prolonged cannabis use (P = 0.002) were noted. Conclusion. The positive effects of cannabis on various cancer-related symptoms are tempered by reliance on self-reporting for many of the variables. Although studies with a control group are missing, the improvement in symptoms should push the use of cannabis in palliative treatment of oncology patients.

How to implement quality indicators successfully in palliative care services: perceptions of team members about facilitators of and barriers to implementation.

PubMed

Leemans, Kathleen; Van den Block, Lieve; Vander Stichele, Robert; Francke, Anneke L; Deliens, Luc; Cohen, Joachim

2015-12-01

There is an increasing demand for the use of quality indicators in palliative care. With previous research about implementation in this field lacking, we aimed to evaluate the barriers to and facilitators of implementation. Three focus group interviews were organized with 21 caregivers from 18 different specialized palliative care services in Belgium. Four had already worked with the indicators during a pilot study. The focus group discussions were transcribed verbatim and analyzed using the thematic framework approach. The caregivers anticipated that a positive attitude by the team towards quality improvement, the presence of a good leader, and the possible link between quality indicators and reimbursement might facilitate the implementation of quality indicators in specialized palliative care services. Other facilitators concerned the presence of a need to demonstrate quality of care, to perform improvement actions, and to learn from other caregivers and services in the field. A negative attitude by caregivers towards quality measurement and a lack of skills, time, and staff were mentioned as barriers to successful implementation. Palliative caregivers anticipate a number of opportunities and problems when implementing quality indicators. These relate to the attitudes of the team regarding quality measurement; the attitudes, knowledge, and skills of the individual caregivers within the team; and the organizational context and the economic and political context. Training in the advantages of quality indicators and how to use them is indispensable, as are structural changes in the policy concerning palliative care, in order to progress towards systematic quality monitoring.

Consultation with specialist palliative care services in palliative sedation: considerations of Dutch physicians.

PubMed

Koper, Ian; van der Heide, Agnes; Janssens, Rien; Swart, Siebe; Perez, Roberto; Rietjens, Judith

2014-01-01

Palliative sedation is considered a normal medical practice by the Royal Dutch Medical Association. Therefore, consultation of an expert is not considered mandatory. The European Association of Palliative Care (EAPC) framework for palliative sedation, however, is more stringent: it considers the use of palliative sedation without consulting an expert as injudicious and insists on input from a multi-professional palliative care team. This study investigates the considerations of Dutch physicians concerning consultation about palliative sedation with specialist palliative care services. Fifty-four physicians were interviewed on their most recent case of palliative sedation. Reasons to consult were a lack of expertise and the view that consultation was generally supportive. Reasons not to consult were sufficient expertise, the view that palliative sedation is a normal medical procedure, time pressure, fear of disagreement with the service and regarding consultation as having little added value. Arguments in favour of mandatory consultation were that many physicians lack expertise and that palliative sedation is an exceptional intervention. Arguments against mandatory consultation were practical obstacles that may preclude fulfilling such an obligation (i.e. lack of time), palliative sedation being a standard medical procedure, corroding a physician's responsibility and deterring physicians from applying palliative sedation. Consultation about palliative sedation with specialist palliative care services is regarded as supportive and helpful when physicians lack expertise. However, Dutch physicians have both practical and theoretical objections against mandatory consultation. Based on the findings in this study, there seems to be little support among Dutch physicians for the EAPC recommendations on obligatory consultation.

The potential of palliative care for patients with respiratory diseases

PubMed Central

Narsavage, Georgia L.; Chen, Yea-Jyh; Korn, Bettina; Elk, Ronit

2017-01-01

Based on the demonstrated effectiveness of palliative care in the alleviation of symptoms and enhancement of life quality, it is important to incorporate palliative care early in the respiratory disease trajectory. Quality palliative care addresses eight domains that are all patient and family centred. Palliative care interventions in respiratory conditions include management of symptoms such as dyspnoea, cough, haemoptysis, sputum production, fatigue and respiratory secretion management, especially as the end-of-life nears. A practical checklist of activities based on the domains of palliative care can assist clinicians to integrate palliative care into their practice. Clinical management of patients receiving palliative care requires consideration of human factors and related organisational characteristics that involve cultural, educational and motivational aspects of the patient/family and clinicians. Educational aims To explain the basic domains of palliative care applicable to chronic respiratory diseases. To review palliative care interventions for patients with chronic respiratory diseases. To outline a checklist for clinicians to use in practice, based on the domains of palliative care. To propose recommendations for clinical management of patients receiving palliative care for chronic respiratory diseases. PMID:29209422

Practices in Human Dignity in Palliative Care: A Qualitative Study.

PubMed

Akin Korhan, Esra; Üstün, Çağatay; Uzelli Yilmaz, Derya

Respecting and valuing an individual's existential dignity forms the basis of nursing and medical practice and of nursing care. The objective of the study was to determine the approach to human dignity that nurses and physicians have while providing palliative care. This qualitative study was performed using a phenomenological research design. In-depth semistructured interviews were conducted in 9 nurses and 5 physicians with human dignity approach in palliative care. Following the qualitative Colaizzi method of analyzing the data, the statements made by the nurses and physicians during the interviews were grouped under 8 categories. Consistent with the questionnaire format, 8 themes and 43 subthemes of responses were determined describing the human dignity of the nurse and the physicians. The results of the study showed that in some of the decisions and practices of the nurses giving nursing care and physicians giving medical care to palliative care patients, while they displayed ethically sensitive behavior, on some points, they showed approaches that violated human dignity and showed lack of awareness of ethical, medical, and social responsibilities.

Palliative sedation for terminally ill cancer patients in a tertiary cancer center in Shanghai, China.

PubMed

Gu, Xiaoli; Cheng, Wenwu; Chen, Menglei; Liu, Minghui; Zhang, Zhe

2015-01-01

There are a number of studies dedicated to characteristics of sedation, but these studies are mostly bound to western country practices. The aim of this study is to describe the characteristics of patients who suffered from cancer and who had been sedated until their death in Shanghai, China. Retrospective medical data of 244 terminally ill cancer patients including 82 sedated patients were collected. Data collected included demographic characteristics, disease-related characteristics and details of the sedation. In sedated cases, patients and/or caregivers gave the consent to start palliative sedation due to unmanageable symptoms. On average, sedation was performed 24.65(±1.78)hours before death. Agitated delirium and dyspnea were the most frequent indications for palliative sedation. There was no significant difference in survival time from admission till death between sedated and non-sedated patients (p > 0.05). Palliative sedation is effective for reducing terminally ill cancer patients' suffering without hastening death. Prospective research is needed to determine the optimal conditions for Chinese patients including indications, decision making process, informed consent, cultural and ethical issues, type of sedation and drugs.

The views of patients with brain cancer about palliative care: a qualitative study.

PubMed

Vierhout, M; Daniels, M; Mazzotta, P; Vlahos, J; Mason, W P; Bernstein, M

2017-12-01

Palliative care, a specialty aimed at providing optimal care to patients with life-limiting and chronic conditions, has several benefits. Although palliative care is appropriate for neurosurgical conditions, including brain cancer, few studies have examined the views of brain cancer patients about palliative care. We aimed to explore the thoughts of brain cancer patients about palliative care, their opinions about early palliative care, and their preferred care setting. Semi-structured interviews and the qualitative research methodologies of grounded theory were used to explore perceptions of palliative care on the part of 39 brain cancer outpatients. Seven overarching actions emerged: ■Patients would prefer to receive palliative care in the home.■Increased time with caregivers and family are the main appeals of home care.■Patients express dissatisfaction with brief and superficial interactions with health care providers.■Patients believe that palliative care can contribute to their emotional well-being.■Patients are open to palliative care if they believe that it will not diminish optimism.■There is a preconceived idea that palliative care is directly linked to active dying, and that supposed link generates fear in some patients.■Patients prefer to be educated about palliative care as an option early in their illness, even if they are fearful of it. Overall, when educated about the true meaning of palliative care, most patients express interest in accessing palliative care services. Although the level of fear concerning palliative care varies in patients, most recognize the associated benefits.

Development of Palliative Care in China: A Tale of Three Cities.

PubMed

Yin, Zhenyu; Li, Jinxiang; Ma, Ke; Ning, Xiaohong; Chen, Huiping; Fu, Haiyan; Zhang, Haibo; Wang, Chun; Bruera, Eduardo; Hui, David

2017-11-01

China is the most populous country in the world, but access to palliative care is extremely limited. A better understanding of the development of palliative care programs in China and how they overcome the barriers to provide services would inform how we can further integrate palliative care into oncology practices in China. Here, we describe the program development and infrastructure of the palliative care programs at three Chinese institutions, using these as examples to discuss strategies to accelerate palliative care access for cancer patients in China. Case study of three palliative care programs in Chengdu, Kunming, and Beijing. The three examples of palliative care delivery in China ranged from a comprehensive program that includes all major branches of palliative care in Chengdu, a program that is predominantly inpatient-based in Kunming, and a smaller program at an earlier stage of development in Beijing. Despite the numerous challenges related to the limited training opportunities, stigma on death and dying, and lack of resources and policies to support clinical practice, these programs were able to overcome many barriers to offer palliative care services to patients with advanced diseases and to advance this discipline in China through visionary leadership, collaboration with other countries to acquire palliative care expertise, committed staff members, and persistence. Palliative care is limited in China, although a few comprehensive programs exist. Our findings may inform palliative care program development in other Chinese hospitals. With a population of 1.3 billion, China is the most populous country in the world, and cancer is the leading cause of death. However, only 0.7% of hospitals offer palliative care services, which significantly limits palliative care access for Chinese cancer patients. Here, we describe the program development and infrastructure of three palliative care programs in China, using these as examples to discuss how they were able to overcome various barriers to implement palliative care. Lessons from these programs may help to accelerate the progress of palliative cancer care in China. © AlphaMed Press 2017.

Effectiveness of the ACA (Availability, Current issues and Anticipation) training programme on GP-patient communication in palliative care; a controlled trial

PubMed Central

2013-01-01

Background Communicating effectively with palliative care patients has been acknowledged to be somewhat difficult, but little is known about the effect that training general practitioners (GPs) in specific elements of communication in palliative care might have. We hypothesized that GPs exposed to a new training programme in GP-patient communication in palliative care focusing on availability of the GP for the patient, current issues the GP should discuss with the patient and anticipation by the GP of various scenarios (ACA), would discuss more issues and become more skilled in their communication with palliative care patients. Methods In this controlled trial among GPs who attended a two-year Palliative Care Peer Group Training Course in the Netherlands only intervention GPs received the ACA training programme. To evaluate the effect of the programme a content analysis (Roter Interaction Analysis System) was performed of one videotaped 15-minute consultation of each GP with a simulated palliative care patient conducted at baseline, and one at 12 months follow-up. Both how the GP communicated with the patient (‘availability’) and the number of current and anticipated issues the GP discussed with the patient were measured quantitatively. We used linear mixed models and logistic regression models to evaluate between-group differences over time. Results Sixty-two GPs were assigned to the intervention and 64 to the control group. We found no effect of the ACA training programme on how the GPs communicated with the patient or on the number of issues discussed by GPs with the patient. The total number of issues discussed by the GPs was eight out of 13 before and after the training in both groups. Conclusion The ACA training programme did not influence how the GPs communicated with the simulated palliative care patient or the number of issues discussed by the GPs in this trial. Further research should evaluate whether this training programme is effective for GPs who do not have a special interest in palliative care and whether studies using outcomes at patient level can provide more insight into the effectiveness of the ACA training programme. Trial registration Current Controlled Trials ISRCTN56722368 PMID:23819723

The development of hospital-based palliative care services in public hospitals in the Western Cape, South Africa.

PubMed

Gwyther, L; Krause, R; Cupido, C; Stanford, J; Grey, H; Credé, T; De Vos, A; Arendse, J; Raubenheimer, P

2018-02-01

With the recent approval of a South African (SA) National Policy Framework and Strategy for Palliative Care by the National Health Council, it is pertinent to reflect on initiatives to develop palliative care services in public hospitals. This article reviews the development of hospital-based palliative care services in the Western Cape, SA. Palliative care services in SA started in the non-governmental sector in the 1980s. The first SA hospital-based palliative care team was established in Charlotte Maxeke Johannesburg Academic Hospital in 2001. The awareness of the benefit of palliative care in the hospital setting led to the development of isolated pockets of excellence providing palliative care in the public health sector in SA. This article describes models for palliative care at tertiary, provincial and district hospital level, which could inform development of hospital-based palliative care as the national policy for palliative care is implemented in SA.

At-home palliative sedation for end-of-life cancer patients.

PubMed

Alonso-Babarro, Alberto; Varela-Cerdeira, Maria; Torres-Vigil, Isabel; Rodríguez-Barrientos, Ricardo; Bruera, Eduardo

2010-07-01

Using a decision-making and treatment checklist developed to facilitate the at-home palliative sedation process, we assessed the incidence and efficacy of palliative sedation for end-of-life cancer patients with intractable symptoms who died at home. We retrospectively reviewed the medical records of 370 patients who were followed by a palliative home care team. Twenty-nine of 245 patients (12%) who died at home had received palliative sedation. The mean age of the patients who received palliative sedation was 58 +/- 17 years, and the mean age of the patients who did not receive palliative sedation was 69 +/- 15 years (p = 0.002). No other differences were detected between patients who did or did not receive palliative sedation. The most common indications for palliative sedation were delirium (62%) and dyspnea (14%). Twenty-seven patients (93%) received midazolam for palliative sedation (final mean dose of 74 mg), and two (7%) received levomepromazine (final mean dose of 125 mg). The mean time between palliative sedation initiation and time of death was 2.6 days. In 13 of the cases (45%), the palliative sedation decision was made with the patient and his or her family members, and in another 13 patients (45%), the palliative sedation decision was made only with the patient's family members. We concluded that palliative sedation may be used safely and efficaciously to treat dying cancer patients with refractory symptoms at home.

Neutrophil/Lymphocyte ratio and association with arch intervention in patients with hypoplastic left heart syndrome undergoing hybrid procedure.

PubMed

Mitchell, Elizabeth; Cheatham, John P; Sisk, James M; Nicholson, Lisa; Holzer, Ralf; Galantowicz, Mark; Cua, Clifford L

2014-01-01

Hybrid procedure is an alternative initial palliation for patients with hypoplastic left heart syndrome (HLHS). One major complication with this procedure is stenosis in the aortic arch isthmus possibly due to inflammation from the patent ductus arteriosus (PDA) stent. In adult studies, neutrophil/lymphocyte (N/L) ratio has been used as a marker for increased inflammation and has been associated with increased risk for coronary artery stent stenosis. The goal of this study was to determine if there were differences in N/L ratio between patients with HLHS undergoing hybrid procedure that required an arch intervention (AI-Group) vs. those that did not require an intervention (NAI-Group). Retrospective chart review was performed on patients with HLHS undergoing hybrid procedure between July 2002 and January 2013. Complete blood counts as well as differentials were recorded at four time periods: 1 day prehybrid palliation, one day posthybrid palliation, 1 week posthybrid palliation, and 3 weeks posthybrid palliation. One hundred six patients were evaluated (AI-Group = 38, NAI-Group = 68). AI-Group generally had a higher N/L ratio vs. NAI-group and this was significant immediately 1 day posthybrid palliation: AI-Group vs. NAI-Group, prehybrid (2.95 ± 2.62 vs. 2.44 ± 1.71), 1 day posthybrid (5.95 ± 4.16 vs. 4.34 ± 3.87, P < .05), 1 week posthybrid (2.72 ± 3.01 vs. 2.28 ± 2.12), and 3 weeks posthybrid (1.85 ± 1.24 vs. 1.45 ± 1.16), respectively. Lymphocyte percentage was significantly lower in the AI-Group vs. NAI-Group 3 weeks posthybrid palliation (33.00 + 11.30% vs. 40.65 + 16.82%). Patients that required an arch intervention after hybrid palliation had a higher N/L ratio immediately after the procedure. This may signify increased inflammatory reaction that places these patients at risk for stenosis. Future studies are needed to determine if N/L ratio is a robust marker to risk stratify patients undergoing the hybrid procedure for arch complications. © 2014 Wiley Periodicals, Inc.

Integrated palliative care is about professional networking rather than standardisation of care: A qualitative study with healthcare professionals in 19 integrated palliative care initiatives in five European countries

PubMed Central

den Herder-van der Eerden, Marlieke; van Wijngaarden, Jeroen; Preston, Nancy; Linge-Dahl, Lisa; Radbruch, Lukas; Van Beek, Karen; Menten, Johan; Busa, Csilla; Csikos, Agnes; Vissers, Kris; van Gurp, Jelle; Hasselaar, Jeroen

2018-01-01

Background: Integrated palliative care aims at improving coordination of palliative care services around patients’ anticipated needs. However, international comparisons of how integrated palliative care is implemented across four key domains of integrated care (content of care, patient flow, information logistics and availability of (human) resources and material) are lacking. Aim: To examine how integrated palliative care takes shape in practice across abovementioned key domains within several integrated palliative care initiatives in Europe. Design: Qualitative group interview design. Setting/participants: A total of 19 group interviews were conducted (2 in Belgium, 4 in the Netherlands, 4 in the United Kingdom, 4 in Germany and 5 in Hungary) with 142 healthcare professionals from several integrated palliative care initiatives in five European countries. The majority were nurses (n = 66; 46%) and physicians (n = 50; 35%). Results: The dominant strategy for fostering integrated palliative care is building core teams of palliative care specialists and extended professional networks based on personal relationships, shared norms, values and mutual trust, rather than developing standardised information exchange and referral pathways. Providing integrated palliative care with healthcare professionals in the wider professional community appears difficult, as a shared proactive multidisciplinary palliative care approach is lacking, and healthcare professionals often do not know palliative care professionals or services. Conclusion: Achieving better palliative care integration into regular healthcare and convincing the wider professional community is a difficult task that will take time and effort. Enhancing standardisation of palliative care into education, referral pathways and guidelines and standardised information exchange may be necessary. External authority (policy makers, insurance companies and professional bodies) may be needed to support integrated palliative care practices across settings. PMID:29436279

The Costs of Waiting: Implications of the Timing of Palliative Care Consultation among a Cohort of Decedents at a Comprehensive Cancer Center.

PubMed

Scibetta, Colin; Kerr, Kathleen; Mcguire, Joseph; Rabow, Michael W

2016-01-01

Palliative care is recommended along with oncologic care for patients with advanced cancer. However, there are limited data about how the timing of palliative care affects quality and costs. Comparison of health care utilization and care quality for patients with cancer who died having received early versus late palliative care. Analysis of cancer registry, administrative, and billing databases. Patients with cancer who died having received specialty palliative care consultation. Comparing early (more than 90 days prior to death) versus late (less than 90 days prior to death) palliative care, outcome measures included rates of health care utilization and health care costs. Among 922 decedents, 297 (32.2%) had palliative care referrals, with 93 (10.1%) receiving early referrals and 204 (22.1%) late referrals. Compared to patients receiving late palliative care, early palliative care patients had lower rates of inpatient (33% versus 66%, p < 0.01), ICU (5% versus 20%, p < 0.01), and ED utilization (34% versus 54%, p = 0.04) in the last month of life. Direct costs of inpatient care in the last 6 months of life for patients with early palliative care were lower compared to late palliative care ($19,067 versus $25,754, p < 0.01), while direct outpatient costs were similar ($13,040 versus $11,549, p = 0.85). Early palliative care was predominantly delivered in the outpatient setting (84%) while late palliative care was mostly delivered in the hospital (82%). Early palliative care is associated with less intensive medical care, improved quality outcomes, and cost savings at the end of life for patients with cancer. Despite recommendations that early palliative care be offered to all patients with metastatic cancer, palliative care services remain underutilized.

Integrated palliative care is about professional networking rather than standardisation of care: A qualitative study with healthcare professionals in 19 integrated palliative care initiatives in five European countries.

PubMed

den Herder-van der Eerden, Marlieke; van Wijngaarden, Jeroen; Payne, Sheila; Preston, Nancy; Linge-Dahl, Lisa; Radbruch, Lukas; Van Beek, Karen; Menten, Johan; Busa, Csilla; Csikos, Agnes; Vissers, Kris; van Gurp, Jelle; Hasselaar, Jeroen

2018-06-01

Integrated palliative care aims at improving coordination of palliative care services around patients' anticipated needs. However, international comparisons of how integrated palliative care is implemented across four key domains of integrated care (content of care, patient flow, information logistics and availability of (human) resources and material) are lacking. To examine how integrated palliative care takes shape in practice across abovementioned key domains within several integrated palliative care initiatives in Europe. Qualitative group interview design. A total of 19 group interviews were conducted (2 in Belgium, 4 in the Netherlands, 4 in the United Kingdom, 4 in Germany and 5 in Hungary) with 142 healthcare professionals from several integrated palliative care initiatives in five European countries. The majority were nurses ( n = 66; 46%) and physicians ( n = 50; 35%). The dominant strategy for fostering integrated palliative care is building core teams of palliative care specialists and extended professional networks based on personal relationships, shared norms, values and mutual trust, rather than developing standardised information exchange and referral pathways. Providing integrated palliative care with healthcare professionals in the wider professional community appears difficult, as a shared proactive multidisciplinary palliative care approach is lacking, and healthcare professionals often do not know palliative care professionals or services. Achieving better palliative care integration into regular healthcare and convincing the wider professional community is a difficult task that will take time and effort. Enhancing standardisation of palliative care into education, referral pathways and guidelines and standardised information exchange may be necessary. External authority (policy makers, insurance companies and professional bodies) may be needed to support integrated palliative care practices across settings.

Development and Implementation of a Pediatric Palliative Care Program in a Developing Country.

PubMed

Doherty, Megan; Thabet, Chloé

2018-01-01

Palliative care is recognized as an important component of care for children with cancer and other life-limiting conditions. In resource limited settings, palliative care is a key component of care for children with cancer and other life-limiting conditions. Globally, 98% of children who need palliative care live in low- or middle-income countries, where there are very few palliative care services available. There is limited evidence describing the practical considerations for the development and implementation of sustainable and cost-effective palliative care services in developing countries. Our aim is to describe the key considerations and initiatives that were successful in planning and implementing a hospital-based pediatric palliative care service specifically designed for a resource-limited setting. Bangabandu Sheikh Mujib Medical University (BSMMU) is a tertiary referral hospital in Bangladesh. Local palliative care services are very limited and focused on adult patients. In partnership with World Child Cancer, a project establishing a pediatric palliative care service was developed for children with cancer at BSMMU. We describe four key elements which were crucial for the success of this program: (1) raising awareness and sensitizing hospital administrators and clinical staff about pediatric palliative care; (2) providing education and training on pediatric palliative care for clinical staff; (3) forming a pediatric palliative care team; and (4) collecting data to characterize the need for pediatric palliative care. This model of a hospital-based pediatric palliative care service can be replicated in other resource-limited settings and can be expanded to include children with other life-limiting conditions. The development of pilot programs can generate interest among local physicians to become trained in pediatric palliative care and can be used to advocate for the palliative care needs of children.

Frequently Asked Questions (Palliative Care: Conversations Matter)

MedlinePlus

... NINR Home About Email Search En Español Palliative Care - Top Menu Show — Palliative Care - Top Menu Hide — ... and Frequently Asked Questions What is pediatric palliative care? Pediatric palliative (pal-lee-uh-tiv) care is ...

The Attitudes of Indian Palliative-care Nurses and Physicians to Pain Control and Palliative Sedation.

PubMed

Gielen, Joris; Gupta, Harmala; Rajvanshi, Ambika; Bhatnagar, Sushma; Mishra, Seema; Chaturvedi, Arvind K; den Branden, Stef Van; Broeckaert, Bert

2011-01-01

We wanted to assess Indian palliative-care nurses and physicians' attitudes toward pain control and palliative sedation. From May to September 2008, we interviewed 14 physicians and 13 nurses working in different palliative-care programs in New Delhi, using a semi-structured questionnaire, and following grounded-theory methodology (Glaser and Strauss). The interviewees did not consider administration of painkillers in large doses an ethical problem, provided the pain killers are properly titrated. Mild palliative sedation was considered acceptable. The interviewees disagreed whether palliative sedation can also be deep and continuous. Arguments mentioned against deep continuous palliative sedation were the conviction that it may cause unacceptable side effects, and impedes basic daily activities and social contacts. A few interviewees said that palliative sedation may hasten death. Due to fears and doubts regarding deep continuous palliative sedation, it may sometimes be too easily discarded as a treatment option for refractory symptoms.

Strategies for Introducing Outpatient Specialty Palliative Care in Gynecologic Oncology.

PubMed

Hay, Casey M; Lefkowits, Carolyn; Crowley-Matoka, Megan; Bakitas, Marie A; Clark, Leslie H; Duska, Linda R; Urban, Renata R; Creasy, Stephanie L; Schenker, Yael

2017-09-01

Concern that patients will react negatively to the idea of palliative care is cited as a barrier to timely referral. Strategies to successfully introduce specialty palliative care to patients have not been well described. We sought to understand how gynecologic oncologists introduce outpatient specialty palliative care. We conducted a national qualitative interview study at six geographically diverse academic cancer centers with well-established palliative care clinics between September 2015 and March 2016. Thirty-four gynecologic oncologists participated in semistructured telephone interviews focusing on attitudes, experiences, and practices related to outpatient palliative care. A multidisciplinary team analyzed interview transcripts using constant comparative methods to inductively develop and refine a coding framework. This analysis focuses on practices for introducing palliative care. Mean participant age was 47 years (standard deviation, 10 years). Mean interview length was 25 minutes (standard deviation, 7 minutes). Gynecologic oncologists described the following three main strategies for introducing outpatient specialty palliative care: focus initial palliative care referral on symptom management to dissociate palliative care from end-of-life care and facilitate early relationship building with palliative care clinicians; use a strong physician-patient relationship and patient trust to increase acceptance of referral; and explain and normalize palliative care referral to address negative associations and decrease patient fear of abandonment. These strategies aim to decrease negative patient associations and encourage acceptance of early referral to palliative care specialists. Gynecologic oncologists have developed strategies for introducing palliative care services to alleviate patient concerns. These strategies provide groundwork for developing system-wide best practice approaches to the presentation of palliative care referral.

Facial affect processing in patients receiving opioid treatment in palliative care: preferential processing of threat in pain catastrophizers.

PubMed

Carroll, Erin M A; Kamboj, Sunjeev K; Conroy, Laura; Tookman, Adrian; Williams, Amanda C de C; Jones, Louise; Morgan, Celia J A; Curran, H Valerie

2011-06-01

As a multidimensional phenomenon, pain is influenced by various psychological factors. One such factor is catastrophizing, which is associated with higher pain intensity and emotional distress in cancer and noncancer pain. One possibility is that catastrophizing represents a general cognitive style that preferentially supports the processing of negative affective stimuli. Such preferential processing of threat--toward negative facial expressions, for example--is seen in emotional disorders and is sensitive to pharmacological treatment. Whether pharmacological (analgesic) treatment might also influence the processing of threat in pain patients is currently unclear. This study investigates the effects catastrophizing on processing of facial affect in those receiving an acute opioid dose. In a double-blind crossover design, the performance of 20 palliative care patients after their usual dose of immediate-release opioid was compared with their performance following matched-placebo administration on a facial affect recognition (i.e., speed and accuracy) and threat-pain estimation task (i.e., ratings of pain intensity). The influence of catastrophizing was examined by splitting the sample according to their score on the Pain Catastrophizing Scale (PCS). Opioid administration had no effect on facial affect processing compared with placebo. However, the main finding was that enhanced processing of fear, sadness, and disgust was found only in patients who scored highly on the PCS. There was no difference in performance between the two PCS groups on the other emotions (i.e., happiness, surprise, and anger). These findings suggest that catastrophizing is associated with an affective information-processing bias in patients with severe pain conditions. Copyright © 2011 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

A National Observational Study of the Prevalence and Use of Enteral Tube Feeding, Parenteral Nutrition and Intravenous Glucose in Cancer Patients Enrolled in Specialized Palliative Care

PubMed Central

Orrevall, Ylva; Tishelman, Carol; Permert, Johan; Lundström, Staffan

2013-01-01

The use of artificial nutrition remains controversial for cancer patients in palliative care, and its prevalence is largely unknown. We therefore conducted a national study to investigate the prevalence, indications for, and perceived benefit of enteral/parenteral nutrition and intravenous glucose in this patient group. A cross-sectional study was performed within the palliative care research network in Sweden (PANIS), using a web-based survey with 24 questions on demographics, prescribed nutritional treatment, estimated survival and benefit from treatment. Data was received from 32 palliative care units throughout the country, representing 1083 patients with gastrointestinal and gynecological malignancies being the most common diagnoses. Thirteen percent of the patients received enteral/parenteral nutrition or intravenous glucose. Parenteral nutrition (PN) was significantly more common in home care units serving the urban Stockholm region (11%) than in other parts of the country (4%). Weight and appetite loss were the predominant indications for PN, with this treatment deemed beneficial for 75% of the palliative patients. Data show that there was great variation in PN use within the country. PN was predominately initiated when patients had weight and appetite loss but still had oral intake, indicating a use of PN that extends beyond the traditional use for patients with obstruction/semi obstruction. PMID:23340317

Criteria for successful multiprofessional cooperation in palliative care teams.

PubMed

Jünger, S; Pestinger, M; Elsner, F; Krumm, N; Radbruch, L

2007-06-01

Team work is considered a central component of palliative care. Within this comparatively young field of medicine, the emergence of new institutions (eg, palliative care units) highlights the challenge of establishing a completely new team. This study focuses on the factors, which enhance both the success and outcome criteria of good team work from the perception of team members in a palliative care unit. The palliative care team at the University Hospital of Aachen (n = 19) was interviewed 1 year after the unit's startup by the means of semistructured interviews. Interview texts were analysed using qualitative content analysis. Factors crucial to cooperation in the team members' views were close communication, team philosophy, good interpersonal relationships, high team commitment, autonomy and the ability to deal with death and dying. Moreover, close communication was by far the most frequently mentioned criteria for cooperation. Team performance, good coordination of workflow and mutual trust underpin the evaluation of efficient team work. Inefficient team work is associated with the absence of clear goals, tasks and role delegation, as well as a lack of team commitment. In a new team, close communication is particularly important for staff as they reorientate themselves to the dynamics of a new peer group. The results confirm the overwhelming importance of clarity, commitment and close, positive exchange among team members for successful team work.

Home-based palliative care: challenges in the care of technology-dependent children.

PubMed

Floriani, Ciro A

2010-01-01

To conceptualize palliative care and its indications in Pediatrics; to describe the difficulties involved in the delivery of such care at home for technology-dependent children; and to analyze, from a bioethical perspective, the moral dilemmas of palliative care assistance. A literature review of palliative care for technology-dependent children and a bioethical analysis of moral dilemmas. There are several obstacles to palliative care for technology-dependent children: structural difficulties at home; social isolation of both children and families; health professionals' sense of disbelief regarding this type of care; an excessive number of medical devices at home; uncertainty of a terminal prognosis; physical, emotional, social, material, and financial burden for parents and family; changes in family dynamics to adjust to these children; paternalistic relationship between professionals and family; changes in family roles, with shifts in the caregiver role. It is essential to outline an agenda based on the premise that the medical apparatus for technology-dependent children will change the landscape of the home, and such a change might become a problem to be faced by all those living together. Based on this assumption, actions performed in a setting other than a health care facility might exert an actual protective effect on children and family, offering support in their several needs and developing a model of care delivery that includes interventions in the different levels of burden on these vulnerated and unprotected individuals.

Perioperative Palliative Care Considerations for Surgical Oncology Nurses.

PubMed

Sipples, Rebecca; Taylor, Richard; Kirk-Walker, Deborah; Bagcivan, Gulcan; Dionne-Odom, J Nicholas; Bakitas, Marie

2017-02-01

To explore the opportunities to incorporate palliative care into perioperative oncology patient management and education strategies for surgical oncology nurses. Articles related to palliative care and surgical oncology to determine the degree of integration, gaps, and implications for practice. Although evidence supports positive patient outcomes when palliative care is integrated in the perioperative period, uptake of palliative care into surgical settings is slow. Palliative care concepts are not adequately integrated into surgical and nursing education. With appropriate palliative care education and training, surgical oncology nurses will be empowered to foster surgical-palliative care collaborations to improve patient outcomes. Copyright © 2016 Elsevier Inc. All rights reserved.

Community Pharmacists' Attitudes Toward Palliative Care: An Australian Nationwide Survey

PubMed Central

Hewitt, Lauren Y.; Tuffin, Penelope H.R.

2013-01-01

Abstract Background: Pharmacists are among the most accessible health care professionals in the community, yet are often not involved in community palliative care teams. Objective: We investigated community pharmacists' attitudes, beliefs, feelings, and knowledge about palliative care as a first step towards determining how best to facilitate the inclusion of community pharmacists on the palliative care team. Method: A cross-sectional descriptive survey design was used. Subjects: Community pharmacists around Australia were invited to participate; 250 completed surveys were returned. Measurements: A survey was constructed to measure pharmacists' knowledge and experience, emotions and beliefs about palliative care. Results: Pharmacists were generally positive about providing services and supports for palliative care patients, yet they also reported negative beliefs and emotions about palliative care. In addition, pharmacists had good knowledge of some aspects of palliative care, but misconceptions about other aspects. Pharmacists' beliefs and knowledge about palliative care predicted—and therefore underpinned—a positive attitude towards palliative care and the provision of services and supports for palliative care patients. Conclusion: The results provide evidence that pharmacists need training and support to facilitate their involvement in providing services and supports for palliative care patients, and highlight areas that training and support initiatives should focus on. PMID:24147876

Community pharmacists' attitudes toward palliative care: an Australian nationwide survey.

PubMed

O'Connor, Moira; Hewitt, Lauren Y; Tuffin, Penelope H R

2013-12-01

Pharmacists are among the most accessible health care professionals in the community, yet are often not involved in community palliative care teams. We investigated community pharmacists' attitudes, beliefs, feelings, and knowledge about palliative care as a first step towards determining how best to facilitate the inclusion of community pharmacists on the palliative care team. A cross-sectional descriptive survey design was used. Community pharmacists around Australia were invited to participate; 250 completed surveys were returned. A survey was constructed to measure pharmacists' knowledge and experience, emotions and beliefs about palliative care. Pharmacists were generally positive about providing services and supports for palliative care patients, yet they also reported negative beliefs and emotions about palliative care. In addition, pharmacists had good knowledge of some aspects of palliative care, but misconceptions about other aspects. Pharmacists' beliefs and knowledge about palliative care predicted--and therefore underpinned--a positive attitude towards palliative care and the provision of services and supports for palliative care patients. The results provide evidence that pharmacists need training and support to facilitate their involvement in providing services and supports for palliative care patients, and highlight areas that training and support initiatives should focus on.

Clinical staff perceptions of palliative care-related quality of care, service access, education and training needs and delivery confidence in an acute hospital setting.

PubMed

Frey, Rosemary; Gott, Merryn; Raphael, Deborah; O'Callaghan, Anne; Robinson, Jackie; Boyd, Michal; Laking, George; Manson, Leigh; Snow, Barry

2014-12-01

Central to appropriate palliative care management in hospital settings is ensuring an adequately trained workforce. In order to achieve optimum palliative care delivery, it is first necessary to create a baseline understanding of the level of palliative care education and support needs among all clinical staff (not just palliative care specialists) within the acute hospital setting. The objectives of the study were to explore clinical staff: perceptions concerning the quality of palliative care delivery and support service accessibility, previous experience and education in palliative care delivery, perceptions of their own need for formal palliative care education, confidence in palliative care delivery and the impact of formal palliative care training on perceived confidence. A purposive sample of clinical staff members (598) in a 710-bed hospital were surveyed regarding their experiences of palliative care delivery and their education needs. On average, the clinical staff rated the quality of care provided to people who die in the hospital as 'good' (x̄=4.17, SD=0.91). Respondents also reported that 19.3% of their time was spent caring for end-of-life patients. However, only 19% of the 598 respondents reported having received formal palliative care training. In contrast, 73.7% answered that they would like formal training. Perceived confidence in palliative care delivery was significantly greater for those clinical staff with formal palliative care training. Formal training in palliative care increases clinical staff perceptions of confidence, which evidence suggests impacts on the quality of palliative care provided to patients. The results of the study should be used to shape the design and delivery of palliative care education programmes within the acute hospital setting to successfully meet the needs of all clinical staff. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

Gaps in Provision of Primary and Specialty Palliative Care in the Acute Care Setting by Race and Ethnicity.

PubMed

Chuang, Elizabeth; Hope, Aluko A; Allyn, Katherine; Szalkiewicz, Elissa; Gary, Brittany; Gong, Michelle N

2017-11-01

Previous research has identified a large unmet need in provision of specialist-level palliative care services in the hospital. How much of this gap is filled by primary palliative care provided by generalists or nonpalliative specialists has not been quantified. Estimates of racial and ethnic disparities have been inconsistent. The objective of this study was to 1) estimate primary and specialty palliative care delivery and to measure unmet needs in the inpatient setting and 2) explore racial and ethnic disparities in palliative care delivery. This was a cross-sectional, retrospective study of 55,658 adult admissions to two acute care hospitals in the Bronx in 2013. Patients with palliative care needs were identified by criteria adapted from the literature. The primary outcomes were delivery of primary and specialist-level palliative care. In all, 18.5% of admissions met criteria for needing palliative care. Of those, 18% received specialist-level palliative care, an estimated 30% received primary palliative care, and 37% had no evidence of palliative care or advance care planning. Black and Hispanic patients were not less likely to receive specialist-level palliative care (adjusted odds ratio [OR] black patients = 1.18, 95% CI 0.98, 1.42; adjusted OR Hispanic patients = 1.24, 95% CI 1.04, 1.48), but they were less likely to receive primary palliative care (adjusted OR black patients = 0.41, 95% CI 0.20, 0.84; adjusted OR Hispanic patients = 0.48, 95% CI 0.25, 0.94). Even when considering primary and specialty palliative care, hospitalized patients have a high prevalence of unmet palliative care need. Further research is needed understand racial and ethnic disparities in palliative care delivery. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Economic impact of hospital inpatient palliative care consultation: review of current evidence and directions for future research.

PubMed

May, Peter; Normand, Charles; Morrison, R Sean

2014-09-01

Maintaining the recent expansion of palliative care access in the United States is a recognized public health concern. Economic evaluation is essential to validate current provision and assess the case for new programs. Previous economic reviews in palliative care reported on programs across settings and systems; none has examined specifically the hospital consultative model, the dominant model of provision in the United States. To review systematically the economic evidence on specialist palliative care consultation teams in the hospital setting, to appraise this evidence critically, and to identify areas for future research in this field. A meta-review ("a review of existing reviews") was conducted of eight published systematic reviews and one relevant nonsystematic review. To identify articles published outside of the timeframe of these reviews, systematic searches were performed on the PubMed, CINAHL, and EconLit databases. Articles were included if they compared the costs and/or cost effectiveness of a specialist hospital inpatient palliative care consultation for adult patients with those of a comparator. Ten studies were included and these demonstrate a clear pattern of cost-saving impact from inpatient consultation programs. Nevertheless, knowledge gaps still exist regarding the economic effects of these programs. Current evidence has been generated from the hospital perspective; health system costs, patient and caregiver costs, and health outcomes are typically not included. Inpatient palliative care consultation programs have been shown to save hospitals money and to provide improved care to patients with serious illness. With a clear pattern of cost-saving using current methodology, it is timely to begin expanding the scope of economic evaluation in this field. Future research must address the measurement of both costs and outcomes to understand more fully the role that palliative care plays in enhancing value in health care. Relevant domains for such research are identified.

Economic Impact of Hospital Inpatient Palliative Care Consultation: Review of Current Evidence and Directions for Future Research

PubMed Central

Normand, Charles; Morrison, R. Sean

2014-01-01

Abstract Background: Maintaining the recent expansion of palliative care access in the United States is a recognized public health concern. Economic evaluation is essential to validate current provision and assess the case for new programs. Previous economic reviews in palliative care reported on programs across settings and systems; none has examined specifically the hospital consultative model, the dominant model of provision in the United States. Objectives: To review systematically the economic evidence on specialist palliative care consultation teams in the hospital setting, to appraise this evidence critically, and to identify areas for future research in this field. Data Sources: A meta-review (“a review of existing reviews”) was conducted of eight published systematic reviews and one relevant nonsystematic review. To identify articles published outside of the timeframe of these reviews, systematic searches were performed on the PubMed, CINAHL, and EconLit databases. Study Selection: Articles were included if they compared the costs and/or cost effectiveness of a specialist hospital inpatient palliative care consultation for adult patients with those of a comparator. Results: Ten studies were included and these demonstrate a clear pattern of cost-saving impact from inpatient consultation programs. Nevertheless, knowledge gaps still exist regarding the economic effects of these programs. Current evidence has been generated from the hospital perspective; health system costs, patient and caregiver costs, and health outcomes are typically not included. Conclusions: Inpatient palliative care consultation programs have been shown to save hospitals money and to provide improved care to patients with serious illness. With a clear pattern of cost-saving using current methodology, it is timely to begin expanding the scope of economic evaluation in this field. Future research must address the measurement of both costs and outcomes to understand more fully the role that palliative care plays in enhancing value in health care. Relevant domains for such research are identified. PMID:24984168

Quality assessment of palliative home care in Italy.

PubMed

Scaccabarozzi, Gianlorenzo; Lovaglio, Pietro Giorgio; Limonta, Fabrizio; Floriani, Maddalena; Pellegrini, Giacomo

2017-08-01

The complexity of end-of-life care, represented by a large number of units caring for dying patients, of different types of organizations motivates the importance of measure the quality of provided care. Despite the law 38/2010 promulgated to remove the barriers and provide affordable access to palliative care, measurement, and monitoring of processes of home care providers in Italy has not been attempted. Using data drawn by an institutional voluntary observatory established in Italy in 2013, collecting home palliative care units caring for people between January and December 2013, we assess the degree to which Italian home palliative care teams endorse a set of standards required by the 38/2010 law and best practices as emerged from the literature. The evaluation strategy is based on Rasch analysis, allowing to objectively measuring both performances of facilities and quality indicators' difficulty on the same metric, using 14 quality indicators identified by the observatory's steering committee. Globally, 195 home care teams were registered in the observatory reporting globally 40 955 cured patients in 2013 representing 66% of the population of home palliative care units active in Italy in 2013. Rasch analysis identifies 5 indicators ("interview" with caregivers, continuous training provided to medical and nursing staff, provision of specialized multidisciplinary interventions, psychological support to the patient and family, and drug supply at home) easy to endorse by health care providers and 3 problematic indicators (presence of a formally established Local Network of Palliative care in the area of reference, provision of the care for most problematic patient requiring high intensity of the care, and the percentage of cancer patient dying at Home). The lack of Local Network of Palliative care, required by law 38/2010, is, at the present, the main barrier to its application. However, the adopted methodology suggests that a clear roadmap for health facilities to afford future quality and normative challenges. © 2017 John Wiley & Sons, Ltd.

The Impact of Dominant Ventricle Morphology on Palliation Outcomes of Single Ventricle Anomalies.

PubMed

Alsoufi, Bahaaldin; Gillespie, Scott; Kim, Dennis; Shashidharan, Subhadra; Kanter, Kirk; Maher, Kevin; Kogon, Brian

2016-08-01

Differences in right ventricle and tricuspid valve structure compared with left ventricle and mitral valve structure make them less equipped to support the systemic circulation long term, with subsequent systemic right ventricle failure. We examined the effect of dominant ventricle morphology on single ventricle palliation outcomes. We grouped 530 neonates who underwent first-stage palliation into two groups based on dominant ventricle morphology: right dominant ventricle (RV group; n = 302, 57%) and left dominant ventricle or functional single ventricle with two well-formed ventricles (LV group; n = 228, 43%). Comparisons of hospital outcomes, interstage mortality, progression to subsequent palliation stages, and late survival was performed, and factors affecting outcomes were examined. After first-stage palliation, the RV group and LV group, respectively, had comparable extracorporeal membrane oxygenation requirements (12% versus 11%, p = 0.648), unplanned reoperation (12% versus 13%, p = 0.586), and hospital death (16% versus 13%, p = 0.437). Among hospital survivors, interstage mortality (11% versus 9%, p = 0.509) and progression to Glenn operation (89% versus 84%, p = 0.182) were comparable; however, death after Glenn was higher in the RV group (10%, versus LV group 4%, p = 0.020) with a trend for lower 8-year survival (66% versus 73%, p = 0.081). On multivariable analysis, dominant RV was not associated with mortality (hazard ratio 0.75, 95% confidence interval: 0.6 to 1.0, p = 0.081), whereas factors such as genetic syndromes, weight 2.5 kg or less, underlying cardiac anomaly, and first-stage palliation type affected survival. At midterm follow-up, underlying cardiac anomaly and patient characteristics affect single ventricle palliation outcomes more than dominant ventricular morphology. As right ventricle and associated tricuspid valve failure might occur at late stages, the impact of dominant ventricular morphology on long-term outcomes requires further assessment. Copyright © 2016 The Society of Thoracic Surgeons. Published by Elsevier Inc. All rights reserved.

A Community Needs Assessment for the Development of an Interprofessional Palliative Care Training Curriculum.

PubMed

Coats, Heather; Paganelli, Tia; Starks, Helene; Lindhorst, Taryn; Starks Acosta, Anne; Mauksch, Larry; Doorenbos, Ardith

2017-03-01

There is a known shortage of trained palliative care professionals, and an even greater shortage of professionals who have been trained through interprofessional curricula. As part of an institutional Palliative Care Training Center grant, a core team of interprofessional palliative care academic faculty and staff completed a state-wide palliative care educational assessment to determine the needs for an interprofessional palliative care training program. The purpose of this article is to describe the process and results of our community needs assessment of interprofessional palliative care educational needs in Washington state. We approached the needs assessment through a cross-sectional descriptive design by using mixed-method inquiry. Each phase incorporated a variety of settings and subjects. The assessment incorporated multiple phases with diverse methodological approaches: a preparatory phase-identifying key informants; Phase I-key informant interviews; Phase II-survey; and Phase III-steering committee endorsement. The multiple phases of the needs assessment helped create a conceptual framework for the Palliative Care Training Center and developed an interprofessional palliative care curriculum. The input from key informants at multiple phases also allowed us to define priority needs and to refine an interprofessional palliative care curriculum. This curriculum will provide an interprofessional palliative care educational program that crosses disciplinary boundaries to integrate knowledge that is beneficial for all palliative care clinicians. The input from a range of palliative care clinicians and professionals at every phase of the needs assessment was critical for creating an interprofessional palliative care curriculum.

Palliative care development in the Asia-Pacific region: an international survey from the Asia Pacific Hospice Palliative Care Network (APHN).

PubMed

Yamaguchi, Takashi; Kuriya, Meiko; Morita, Tatsuya; Agar, Meera; Choi, Youn Seon; Goh, Cynthia; Lingegowda, K B; Lim, Richard; Liu, Rico K Y; MacLeod, Roderick; Ocampo, Rhodora; Cheng, Shao-Yi; Phungrassami, Temsak; Nguyen, Yen-Phi; Tsuneto, Satoru

2017-03-01

Although palliative care is an important public healthcare issue worldwide, the current situation in the Asia-Pacific region has not been systematically evaluated. This survey aimed to clarify the current status of palliative care in the Asia-Pacific region. Questionnaires were sent to a representative physician of each member country/region of the Asia Pacific Hospice Palliative Care Network (APHN). The questionnaire examined palliative care service provision, information regarding physician certification in palliative care, the availability of essential drugs for palliative care listed by the International Association for Hospice and Palliative Care (IAHPC) and the regulation of opioid-prescribing practice. Of the 14 member countries/regions of the APHN, 12 (86%) responded. Some form of specialist palliative care services had developed in all the responding countries/regions. Eight member countries/regions had physician certifications for palliative care. Most essential drugs for palliative care listed by the IAHPC were available, whereas hydromorphone, oxycodone and transmucosal fentanyl were unavailable in most countries/regions. Six member countries/regions required permission to prescribe and receive opioids. The development of palliative care is in different stages across the surveyed countries/regions in the Asia-Pacific region. Data from this survey can be used as baseline data for monitoring the development of palliative care in this region. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.

Education, implementation, and policy barriers to greater integration of palliative care: A literature review.

PubMed

Aldridge, Melissa D; Hasselaar, Jeroen; Garralda, Eduardo; van der Eerden, Marlieke; Stevenson, David; McKendrick, Karen; Centeno, Carlos; Meier, Diane E

2016-03-01

Early integration of palliative care into the management of patients with serious disease has the potential to both improve quality of life of patients and families and reduce healthcare costs. Despite these benefits, significant barriers exist in the United States to the early integration of palliative care in the disease trajectory of individuals with serious illness. To provide an overview of the barriers to more widespread palliative care integration in the United States. A literature review using PubMed from 2005 to March 2015 augmented by primary data collected from 405 hospitals included in the Center to Advance Palliative Care's National Palliative Care Registry for years 2012 and 2013. We use the World Health Organization's Public Health Strategy for Palliative Care as a framework for analyzing barriers to palliative care integration. We identified key barriers to palliative care integration across three World Health Organization domains: (1) education domain: lack of adequate education/training and perception of palliative care as end-of-life care; (2) implementation domain: inadequate size of palliative medicine-trained workforce, challenge of identifying patients appropriate for palliative care referral, and need for culture change across settings; (3) policy domain: fragmented healthcare system, need for greater funding for research, lack of adequate reimbursement for palliative care, and regulatory barriers. We describe the key policy and educational opportunities in the United States to address and potentially overcome the barriers to greater integration of palliative care into the healthcare of Americans with serious illness. © The Author(s) 2015.

Cancer Treatment in Malawi: A Disease of Palliation.

PubMed

Kendig, Claire E; Samuel, Jonathan C; Tyson, Anna F; Khoury, Amal L; Boschini, Laura P; Mabedi, Charles; Cairns, Bruce A; Varela, Carlos; Shores, Carol G; Charles, Anthony G

2013-06-01

Worldwide, new cancer cases will nearly double in the next 20 years while disproportionately affecting low and middle income countries (LMICs). Cancer outcomes in LMICs also remain bleaker than other regions of the world. Despite this, little is known about cancer epidemiology and surgical treatment in LMICs. To address this we sought to describe the characteristics of cancer patients presenting to the Surgery Department at Kamuzu Central Hospital in Lilongwe, Malawi. We conducted a retrospective review of adult (18 years or older) surgical oncology services at Kamuzu Central Hospital in Lilongwe, Malawi from 2007 - 2010. Data obtained from the operating theatre logs included patient demographics, indication for operative procedure, procedure performed, and operative procedures (curative, palliative, or staging). Of all the general surgery procedures performed during this time period (7,076 in total), 16% (406 cases) involved cancer therapy. The mean age of male and female patients in this study population was 52 years and 47 years, respectively. Breast cancer, colorectal cancer, gastric cancer, and melanoma were the most common cancers among women, whereas prostate, colorectal, pancreatic, and, gastric were the most common cancers in men. Although more than 50% of breast cancer operations were performed with curative intent, most procedures were palliative including prostate cancer (98%), colorectal cancer (69%), gastric cancer (71%), and pancreatic cancer (94%). Patients with colorectal, gastric, esophageal, pancreatic, and breast cancer presented at surprisingly young ages. The paucity of procedures with curative intent and young age at presentation reveals that many Malawians miss opportunities for cure and many potential years of life are lost. Though KCH now has pathology services, a cancer registry and a surgical training program, the focus of surgical care remains palliative. Further research should address other methods of increasing early cancer detection and treatment in such populations.

Karnofsky Performance Status and Lactate Dehydrogenase Predict the Benefit of Palliative Whole-Brain Irradiation in Patients With Advanced Intra- and Extracranial Metastases From Malignant Melanoma

DOE Office of Scientific and Technical Information (OSTI.GOV)

Partl, Richard, E-mail: richard.partl@medunigraz.at; Richtig, Erika; Avian, Alexander

2013-03-01

Purpose: To determine prognostic factors that allow the selection of melanoma patients with advanced intra- and extracerebral metastatic disease for palliative whole-brain radiation therapy (WBRT) or best supportive care. Methods and Materials: This was a retrospective study of 87 patients who underwent palliative WBRT between 1988 and 2009 for progressive or multiple cerebral metastases at presentation. Uni- and multivariate analysis took into account the following patient- and tumor-associated factors: gender and age, Karnofsky performance status (KPS), neurologic symptoms, serum lactate dehydrogenase (LDH) level, number of intracranial metastases, previous resection or stereotactic radiosurgery of brain metastases, number of extracranial metastasis sites,more » and local recurrences as well as regional lymph node metastases at the time of WBRT. Results: In univariate analysis, KPS, LDH, number of intracranial metastases, and neurologic symptoms had a significant influence on overall survival. In multivariate survival analysis, KPS and LDH remained as significant prognostic factors, with hazard ratios of 3.3 (95% confidence interval [CI] 1.6-6.5) and 2.8 (95% CI 1.6-4.9), respectively. Patients with KPS ≥70 and LDH ≤240 U/L had a median survival of 191 days; patients with KPS ≥70 and LDH >240 U/L, 96 days; patients with KPS <70 and LDH ≤240 U/L, 47 days; and patients with KPS <70 and LDH >240 U/L, only 34 days. Conclusions: Karnofsky performance status and serum LDH values indicate whether patients with advanced intra- and extracranial tumor manifestations are candidates for palliative WBRT or best supportive care.« less

Palliative sedation for intolerable suffering.

PubMed

Maltoni, Marco; Scarpi, Emanuela; Nanni, Oriana

2014-07-01

The purpose of this review is to provide an update on palliative sedation in palliative and end-of-life care. Palliative sedation is the medical procedure used to deal with refractory symptoms in advanced cancer patients when all other specific approaches have failed. Palliative sedation, in the strictest sense of the term, is a proportionate (proportionate palliative sedation, PPS) and intrinsically variable procedure used on an individual basis to relieve refractory symptoms in terminally ill patients, without the intention of hastening death. Completely separate from any other end-of-life decision and not intended to hasten death, palliative sedation has been shown not to have a detrimental impact on survival. To maintain palliative sedation as a legitimate clinical procedure from any ethical or clinical point of view, it must be limited to the restricted area for which it was conceived, that is, relief from refractory suffering as deemed necessary by a patient and by an experienced palliative care team. In this way, there is no risk of associating palliative sedation with other end-of-life decisions. Close collaboration is needed between oncologists and palliative care physicians for this clinical procedure.

Development of Palliative Care in China: A Tale of Three Cities

PubMed Central

Yin, Zhenyu; Li, Jinxiang; Ma, Ke; Ning, Xiaohong; Chen, Huiping; Fu, Haiyan; Zhang, Haibo; Wang, Chun; Bruera, Eduardo

2017-01-01

Abstract Background. China is the most populous country in the world, but access to palliative care is extremely limited. A better understanding of the development of palliative care programs in China and how they overcome the barriers to provide services would inform how we can further integrate palliative care into oncology practices in China. Here, we describe the program development and infrastructure of the palliative care programs at three Chinese institutions, using these as examples to discuss strategies to accelerate palliative care access for cancer patients in China. Methods. Case study of three palliative care programs in Chengdu, Kunming, and Beijing. Results. The three examples of palliative care delivery in China ranged from a comprehensive program that includes all major branches of palliative care in Chengdu, a program that is predominantly inpatient‐based in Kunming, and a smaller program at an earlier stage of development in Beijing. Despite the numerous challenges related to the limited training opportunities, stigma on death and dying, and lack of resources and policies to support clinical practice, these programs were able to overcome many barriers to offer palliative care services to patients with advanced diseases and to advance this discipline in China through visionary leadership, collaboration with other countries to acquire palliative care expertise, committed staff members, and persistence. Conclusion. Palliative care is limited in China, although a few comprehensive programs exist. Our findings may inform palliative care program development in other Chinese hospitals. Implications for Practice. With a population of 1.3 billion, China is the most populous country in the world, and cancer is the leading cause of death. However, only 0.7% of hospitals offer palliative care services, which significantly limits palliative care access for Chinese cancer patients. Here, we describe the program development and infrastructure of three palliative care programs in China, using these as examples to discuss how they were able to overcome various barriers to implement palliative care. Lessons from these programs may help to accelerate the progress of palliative cancer care in China. PMID:28739870

Internal Medicine Residents' Beliefs, Attitudes, and Experiences Relating to Palliative Care: A Qualitative Study.

PubMed

Kawaguchi, S; Mirza, R; Nissim, R; Ridley, J

2017-05-01

Internal medicine residents are frequently called upon to provide palliative care to hospitalized patients, but report feeling unprepared to do so effectively. Curricular development to enhance residents' palliative care skills and competencies requires an understanding of current beliefs, attitudes and learning priorities. We conducted a qualitative study consisting of semi-structured interviews with ten internal medicine residents to explore their understanding of and experiences with palliative care. All of the residents interviewed had a sound theoretical understanding of palliative care, but faced many challenges in being able to provide care in practice. The challenges described by residents were system-related, patient-related and provider-related. They identified several priority areas for further learning, and discussed ways in which their current education in palliative care could be enhanced. Our findings provide important insights to guide curricular development for internal medicine trainees. The top five learning priorities in palliative care that residents identified in our study were: 1) knowing how and when to initiate a palliative approach, 2) improving communication skills, 3) improving symptom management skills, 4) identifying available resources, and 5) understanding the importance of palliative care. Residents felt that their education in palliative care could be improved by having a mandatory rotation in palliative care, more frequent didactic teaching sessions, more case-based teaching from palliative care providers, opportunities to be directly observed, and increased support from palliative care providers after-hours.

An Innovative Role for Faith Community Nursing: Palliative Care Ministry.

PubMed

Lentz, Judy C

Although the specialty of palliative nursing and palliative care continues to grow in hospital and outpatient settings, a paucity of home-based palliative services remains. This article discusses a new paradigm of faith-based palliative care ministry using faith community nurses (FCNs). Under the leadership of a palliative care doula (a nurse expert in palliative care), nurses in the faith community can offer critical support to those with serious illness. Models such as this provide stimulating content for FCN practice and opportunity to broaden health ministry within faith communities.

Does educating patients about the Early Palliative Care Study increase preferences for outpatient palliative cancer care? Findings from Project EMPOWER.

PubMed

Hoerger, Michael; Perry, Laura M; Gramling, Robert; Epstein, Ronald M; Duberstein, Paul R

2017-06-01

Randomized controlled trials, especially the Early Palliative Care Study (Temel et al., 2010), have shown that early outpatient palliative cancer care can improve quality of life for patients with advanced cancer or serious symptoms. However, fear and misconceptions drive avoidance of palliative care. Drawing from an empowerment perspective, we examined whether educating patients about evidence from the Early Palliative Care Study would increase preferences for palliative care. A sample of 598 patients with prostate, breast, lung, colon/rectal, skin, and other cancer diagnoses completed an Internet-mediated experiment using a between-group prepost design. Intervention participants received a summary of the Early Palliative Care Study; controls received no intervention. Participants completed baseline and posttest assessments of preferences of palliative care. Analyses controlled for age, gender, education, cancer type, presence of metastases, time since diagnosis, and baseline preferences. As hypothesized, the intervention had a favorable impact on participants' preferences for outpatient palliative cancer care relative to controls (d = 1.01, p < .001), while controlling for covariates. Intervention participants came to view palliative care as more efficacious (d = 0.79, p < .001) and less scary (d = 0.60, p < .001) and exhibited stronger behavioral intentions to utilize outpatient palliative care if referred (d = 0.60, p < .001). Findings were comparable in patients with metastatic disease, those with less education, and those experiencing financial strain. Educating patients about the Early Palliative Care Study increases preferences for early outpatient palliative care. This research has implications for future studies aimed at improving quality of life in cancer by increasing palliative care utilization. (PsycINFO Database Record (c) 2017 APA, all rights reserved).

Palliative psychiatry for severe persistent mental illness as a new approach to psychiatry? Definition, scope, benefits, and risks.

PubMed

Trachsel, Manuel; Irwin, Scott A; Biller-Andorno, Nikola; Hoff, Paul; Riese, Florian

2016-07-22

As a significant proportion of patients receiving palliative care suffer from states of anxiety, depression, delirium, or other mental symptoms, psychiatry and palliative care already collaborate closely in the palliative care of medical conditions. Despite this well-established involvement of psychiatrists in palliative care, psychiatry does not currently explicitly provide palliative care for patients with mental illness outside the context of terminal medical illness. Based on the WHO definition of palliative care, a, a working definition of palliative psychiatry is proposed. Palliative psychiatry focuses on mental health rather than medical/physical issues. We propose that the beneficiaries of palliative psychiatry are patients with severe persistent mental illness, who are at risk of therapeutic neglect and/or overly aggressive care within current paradigms. These include long-term residential care patients with severe chronic schizophrenia and insufficient quality of life, those with therapy-refractory depressions and repeated suicide attempts, and those with severe long-standing therapy-refractory anorexia nervosa. An explicitly palliative approach within psychiatry has the potential to improve quality of care, person-centredness, outcomes, and autonomy for patients with severe persistent mental illness. The first step towards a palliative psychiatry is to acknowledge those palliative approaches that already exist implicitly in psychiatry. Basic skills for a palliative psychiatry include communication of diagnosis and prognosis, symptom assessment and management, support for advance (mental health) care planning, assessment of caregiver needs, and referral to specialized services. Some of these may already be considered core skills of psychiatrists, but for a truly palliative approach they should be exercised guided by an awareness of the limited functional prognosis and lifespan of patients with severe persistent mental illness.

Developing a costing framework for palliative care services.

PubMed

Mosoiu, Daniela; Dumitrescu, Malina; Connor, Stephen R

2014-10-01

Palliative care services have been reported to be a less expensive alternative to traditional treatment; however, little is known about how to measure the cost of delivering quality palliative care. The purpose of this project was to develop a standardized method for measuring the cost of palliative care delivery that could potentially be replicated in multiple settings. The project was implemented in three stages. First, an interdisciplinary group of palliative care experts identified standards of quality palliative care delivery in the inpatient and home care services. Surveys were conducted of government agencies and palliative care providers to identify payment practices and budgets for palliative care services. In the second phase, unit costs were defined and a costing framework was designed to measure inpatient and home-based palliative care unit costs. The final phase was advocacy for inclusion of calculated costs into the national funding system. In this project, a reliable framework for determining the cost of inpatient and home-based palliative care services was developed. Inpatient palliative care cost in Romania was calculated at $96.58 per day. Home-based palliative care was calculated at $30.37 per visit, $723.60 per month, and $1367.71 per episode of care, which averaged 45 visits. A standardized methodology and framework for costing palliative care are presented. The framework allows a country or provider of care to substitute their own local costs to generate cost information relevant to the health-care system. In Romania, this allowed the palliative care provider community to advocate for a consistent payment system. Copyright © 2014 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Palliative care for Parkinson's disease: Patient and carer's perspectives explored through qualitative interview.

PubMed

Fox, Siobhan; Cashell, Alison; Kernohan, W George; Lynch, Marie; McGlade, Ciara; O'Brien, Tony; O'Sullivan, Sean S; Foley, Mary J; Timmons, Suzanne

2017-07-01

Palliative care is recommended for non-malignant illnesses, including Parkinson's disease. However, past research with healthcare workers highlights unmet palliative needs in this population and referral rates to Specialist Palliative Care are low. Some healthcare workers perceive a 'fear' in their patients about introducing palliative care. However, less is known about the views of people with Parkinson's disease and their carers about palliative care. (1) To explore the palliative care and related issues most affecting people with Parkinson's disease and their families and (2) to examine perceptions about/understanding of palliative care. This was a qualitative study; semi-structured interviews were conducted, transcribed and analysed using thematic analysis. A total of 31 people participated, both people with Parkinson's disease ( n = 19) and carers ( n = 12), across three Movement Disorder Clinics in the Republic of Ireland. People with Parkinson's disease and their carers were unfamiliar with the term palliative care. When informed of the role of palliative care, most felt that they would benefit from this input. People with Parkinson's disease and carers experienced a high illness burden and wanted extra support. Crises requiring Specialist Palliative Care involvement may occur at diagnosis and later, with advancing illness. Participants wanted more information about palliative care and especially further supports to address their psychosocial needs. A holistic palliative care approach could address the complex physical and psychosocial symptoms experienced by people with Parkinson's disease and their carers, and people with Parkinson's disease and their carers are open to palliative care. Further research needs to explore how palliative care can be introduced into the routine care for people with Parkinson's disease.

Information and communication technology for managing pain in palliative care: a review of the literature.

PubMed

Allsop, Matthew J; Taylor, Sally; Mulvey, Matthew R; Bennett, Michael I; Bewick, Bridgette M

2015-12-01

Information and communication technology (ICT) systems are being developed for electronic symptom reporting across different stages of the cancer trajectory with research in palliative care at an early stage. This paper presents the first systematic search of the literature to review existing ICT systems intended to support management of pain in palliative care patients with cancer. The review was conducted according to Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines for systematic reviews and meta-analyses. Four databases (Embase, MEDLINE, PsycINFO and Healthcare Management Information Consortium) from 1990 to December 2012 were searched, with exclusion of papers based on their description of ICT systems and language used. 24 articles met the inclusion criteria, many of which reported the use of non-experimental research designs. Studies were identified at different stages of development with no systems having reached implementation. Most systems captured pain as part of quality-of-life measurement with wide variation in approaches to pain assessment. ICT systems for symptom reporting are emerging in the palliative care context. Future development of ICT systems need to increase the quality and scale of development work, consider how recommendations for pain measurement can be integrated and explore how to effectively use system feedback with patients. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/

Dutch translation and validation of the readiness for interprofessional learning scale (RIPLS) in a primary healthcare context.

PubMed

Pype, Peter; Deveugele, Myriam

2016-12-01

Interprofessional education and collaborative practice are gradually gaining importance in the context of growing healthcare complexity. The readiness for interprofessional learning scale (RIPLS) is a well-known scale that can identify attitudinal barriers and variance across professions, which may affect educational interventions. This study aims to translate the English RIPLS into Dutch and to test its reliability and validity. The scale was translated and back-translated by two pairs of people independently and tested for feasibility and comprehensibility. The translated scale was used with 219 general practitioners, 238 community nurses, and 53 palliative home-care nurses. Exploratory factor analysis was used to assess construct validity. Confirmatory factor analysis was done to generate a fit model. Cronbach's alpha was computed to evaluate internal consistency. Regression analysis was used to evaluate the effect of the RIPLS score on the level of learning through collaboration and to gauge the influence of the participants' gender, age, previous palliative care education, type of practice and years in practice. Confirmatory and exploratory factor analysis confirms the factor structure of the original version. The Dutch version shows good reliability (overall Cronbach's alpha: 0.88; intraclass correlation coefficient after test-retest: 0.718 (95%CI: 0.499-0.852). The RIPLS score correlates with the amount of workplace learning during collaboration (discriminant validity: P < 0.001). The Dutch translation of the RIPLS is now ready for comparative studies.

Moving towards an enhanced community palliative support service (EnComPaSS): protocol for a mixed method study.

PubMed

Arris, Steven M; Fitzsimmons, Deborah A; Mawson, Susan

2015-04-30

The challenge of an ageing population and consequential increase of long term conditions means that the number of people requiring palliative care services is set to increase. One UK hospice is introducing new information and communication technologies to support the redesign of their community services; improve experiences of existing patients; and allow efficient and effective provision of their service to more people. Community Palliative Care Nurses employed by the hospice will be equipped with a mobile platform to improve communication, enable accurate and efficient collection of clinical data at the bedside, and provide access to clinical records at the point of care through an online digital nursing dashboard. It is believed that this will ensure safer clinical interventions, enable delegated specialist care deployment, support the clinical audit of patient care and improve patient safety and patient/carer experience. Despite current attempts to evaluate the implementation of such technology into end of life care pathways, there is still limited evidence supporting the notion that this can be sustained within services and implemented to scale. This study presents an opportunity to carry out a longitudinal evaluation of the implementation of innovative technology to provide evidence for designing more efficient and effective community palliative care services. A mixed methods approach will be used to understand a wide range of organisational, economic, and patient-level factors. The first stage of the project will involve the development of an organisational model incorporating proposed changes resulting from the introduction of new novel mobile technologies. This model will guide stage two, which will consist of gathering and analysing primary evidence. Data will be collected using interviews, focus groups, observation, routinely collected data and documents. The implementation of this new approach to community-based palliative care delivery will require significant changes to established working patterns. This new service delivery model is being developed by the Hospice in collaboration with a team of international academic, industry, and clinical commissioning service improvement specialists. The findings from this initial evaluation will provide valuable baseline evidence regarding the delivery of palliative and end-of-life care services.

The Attitudes of Indian Palliative-care Nurses and Physicians to Pain Control and Palliative Sedation

PubMed Central

Gielen, Joris; Gupta, Harmala; Rajvanshi, Ambika; Bhatnagar, Sushma; Mishra, Seema; Chaturvedi, Arvind K; den Branden, Stef Van; Broeckaert, Bert

2011-01-01

Aim: We wanted to assess Indian palliative-care nurses and physicians’ attitudes toward pain control and palliative sedation. Materials and Methods: From May to September 2008, we interviewed 14 physicians and 13 nurses working in different palliative-care programs in New Delhi, using a semi-structured questionnaire, and following grounded-theory methodology (Glaser and Strauss). Results: The interviewees did not consider administration of painkillers in large doses an ethical problem, provided the pain killers are properly titrated. Mild palliative sedation was considered acceptable. The interviewees disagreed whether palliative sedation can also be deep and continuous. Arguments mentioned against deep continuous palliative sedation were the conviction that it may cause unacceptable side effects, and impedes basic daily activities and social contacts. A few interviewees said that palliative sedation may hasten death. Conclusion: Due to fears and doubts regarding deep continuous palliative sedation, it may sometimes be too easily discarded as a treatment option for refractory symptoms. PMID:21633619

Development and challenges of palliative care in Indonesia: role of psychosomatic medicine.

PubMed

Putranto, Rudi; Mudjaddid, Endjad; Shatri, Hamzah; Adli, Mizanul; Martina, Diah

2017-01-01

To summarize the current status of palliative care and the role of psychosomatic medicine in Indonesia. Palliative care is not a new issue in Indonesia, which has been improving palliative care since 1992 and developed a palliative care policy in 2007 that was launched by the Indonesian Ministry of Health. However, the progress has been slow and varied across the country. Currently, palliative care services are only available in a few major cities, where most of the facilities for cancer treatment are located. Psychosomatic medical doctors have advantages that contribute to palliative care because of their special training in communication skills to deal with patients from the standpoints of both mind and body. Palliative care services in Indonesia are established in some hospitals. Future work is needed to build capacity, advocate to stakeholders, create care models that provide services in the community, and to increase the palliative care workforce. Psychosomatic medicine plays an important role in palliative care services.

Palliative care and neurology

PubMed Central

Boersma, Isabel; Miyasaki, Janis; Kutner, Jean

2014-01-01

Palliative care is an approach to the care of patients and families facing progressive and chronic illnesses that focuses on the relief of suffering due to physical symptoms, psychosocial issues, and spiritual distress. As neurologists care for patients with chronic, progressive, life-limiting, and disabling conditions, it is important that they understand and learn to apply the principles of palliative medicine. In this article, we aim to provide a practical starting point in palliative medicine for neurologists by answering the following questions: (1) What is palliative care and what is hospice care? (2) What are the palliative care needs of neurology patients? (3) Do neurology patients have unique palliative care needs? and (4) How can palliative care be integrated into neurology practice? We cover several fundamental palliative care skills relevant to neurologists, including communication of bad news, symptom assessment and management, advance care planning, caregiver assessment, and appropriate referral to hospice and other palliative care services. We conclude by suggesting areas for future educational efforts and research. PMID:24991027

Palliative care and neurology: time for a paradigm shift.

PubMed

Boersma, Isabel; Miyasaki, Janis; Kutner, Jean; Kluger, Benzi

2014-08-05

Palliative care is an approach to the care of patients and families facing progressive and chronic illnesses that focuses on the relief of suffering due to physical symptoms, psychosocial issues, and spiritual distress. As neurologists care for patients with chronic, progressive, life-limiting, and disabling conditions, it is important that they understand and learn to apply the principles of palliative medicine. In this article, we aim to provide a practical starting point in palliative medicine for neurologists by answering the following questions: (1) What is palliative care and what is hospice care? (2) What are the palliative care needs of neurology patients? (3) Do neurology patients have unique palliative care needs? and (4) How can palliative care be integrated into neurology practice? We cover several fundamental palliative care skills relevant to neurologists, including communication of bad news, symptom assessment and management, advance care planning, caregiver assessment, and appropriate referral to hospice and other palliative care services. We conclude by suggesting areas for future educational efforts and research. © 2014 American Academy of Neurology.

Palliative care in northern Tanzania: doing a lot with a little.

PubMed

Bond, Melissa J; Knopp, Andrea

2018-06-02

The number of people in need of palliative care is growing worldwide, particularly in the developing world. The World Health Organization recognises palliative care as a basic human right, but there are many challenges for delivering palliative care in low- and middle-income countries. In the African continent, the African Palliative Care Association (APCA) provides guidance for political advocacy for developing palliative care programmes and has developed the APCA Palliative Outcome Score (POS), an evidence-based tool for measuring outcomes of palliative care. This article focuses on palliative care delivery in Shirati, Tanzania, located in the Rorya District in the Mara Region in northern Tanzania, highlighting the impressive work done with limited resources and despite many challenges. Recommendations for future research include evaluation of outcomes using the APCA POS, the application of mobile technology, and governmental advocacy for increased access to opioid medications, which have shown promise in broadening the reach of palliative care in the East African Community.

Specialist palliative care nursing and the philosophy of palliative care: a critical discussion.

PubMed

Robinson, Jackie; Gott, Merryn; Gardiner, Clare; Ingleton, Christine

2017-07-02

Nursing is the largest regulated health professional workforce providing palliative care across a range of clinical settings. Historically, palliative care nursing has been informed by a strong philosophy of care which is soundly articulated in palliative care policy, research and practice. Indeed, palliative care is now considered to be an integral component of nursing practice regardless of the specialty or clinical setting. However, there has been a change in the way palliative care is provided. Upstreaming and mainstreaming of palliative care and the dominance of a biomedical model with increasing medicalisation and specialisation are key factors in the evolution of contemporary palliative care and are likely to impact on nursing practice. Using a critical reflection of the authors own experiences and supported by literature and theory from seminal texts and contemporary academic, policy and clinical literature, this discussion paper will explore the influence of philosophy on nursing knowledge and theory in the context of an evolving model of palliative care.

Design of a nationwide survey on palliative care for end-stage heart failure in Japan.

PubMed

Kurozumi, Yuma; Oishi, Shogo; Sugano, Yasuo; Sakashita, Akihiro; Kotooka, Norihiko; Suzuki, Makoto; Higo, Taiki; Yumino, Dai; Takada, Yasuko; Maeda, Seiko; Yamabe, Saori; Washida, Koichi; Takahashi, Tomonori; Ohtani, Tomohito; Sakata, Yasushi; Sato, Yukihito

2018-02-01

The term palliative care has historically been associated with support for individuals with advanced incurable cancer, so cardiologists and cardiac nurses may be unfamiliar with its principles and practice. However, palliative care is now a part of end-stage heart failure management. We conducted the first nationwide survey to investigate the status of palliative care for heart failure in Japan. A self-reported questionnaire was mailed to all Japanese Circulation Society - authorized cardiology training hospitals (n=1004) in August 2016. The response deadline was December 2016. The survey focused on the following topics: basic information about the facility and multidisciplinary team, patient symptoms for palliative care, positive outcomes after providing palliative care, drug therapy as palliative care for patients with heart failure, advance care planning with patients and their families, and impediments to providing palliative care to patients with heart failure. The results of the survey will be reported in detail elsewhere. Current guidelines on palliative care do not specifically address what team members should be involved, what drugs should be used, or when palliative care should be started. This survey collected information to improve the quality of palliative care and provide more specialized palliative care within the limits of resources. Copyright © 2017 Japanese College of Cardiology. Published by Elsevier Ltd. All rights reserved.

Palliative Care in Vietnam: Long-Term Partnerships Yield Increasing Access.

PubMed

Krakauer, Eric L; Thinh, Dang Huy Quoc; Khanh, Quach Thanh; Huyen, Hoang Thi Mong; Tuan, Tran Diep; The, Than Ha Ngoc; Cuong, Do Duy; Thuan, Tran Van; Yen, Nguyen Phi; Van Anh, Pham; Cham, Nguyen Thi Phuong; Doyle, Kathleen P; Yen, Nguyen Thi Hai; Khue, Luong Ngoc

2018-02-01

Palliative care began in Vietnam in 2001, but steady growth in palliative care services and education commenced several years later when partnerships for ongoing training and technical assistance by committed experts were created with the Ministry of Health, major public hospitals, and medical universities. An empirical analysis of palliative care need by the Ministry of Health in 2006 was followed by national palliative care clinical guidelines, initiation of clinical training for physicians and nurses, and revision of opioid prescribing regulations. As advanced and specialist training programs in palliative care became available, graduates of these programs began helping to establish palliative care services in their hospitals. However, community-based palliative care is not covered by government health insurance and thus is almost completely unavailable. Work is underway to test the hypothesis that insurance coverage of palliative home care not only can improve patient outcomes but also provide financial risk protection for patients' families and reduce costs for the health care system by decreasing hospital admissions near the end of life. A national palliative care policy and strategic plan are needed to maintain progress toward universally accessible cost-effective palliative care services. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

[Participation of radiotherapy in interdisciplinary palliative care units--challenge and chance].

PubMed

Momm, Felix; Becker, Gerhild; Ewald, Hermann; Baumgartner, Johann; Adamietz, Irenäus A; Frommhold, Hermann

2004-02-01

In Germany, a sufficient system of palliative care does not exist. Possibilities for participation of radiooncologists in the further development of this promising part of medical action are reported. Experiences from interdisciplinary work in the field of palliative care are described. This experience is communicated for use in the actual discussion about the future of palliative care in Germany, especially in the field of radiooncology. A palliative care unit can only work in a team of different professions, which means different physicians, but also nurses, social workers, psychologists or pastors. A palliative care unit will benefit from working with radiooncologists as well as radiooncologists will do from working in the field of palliative care. In times of growing interest in and need for palliative care, radiooncologists should actively participate in the development of palliative care units in Germany. The aim of this participation should be to reasonably arrange the treatment of incurably ill patients with the chances of modern radiotherapy. Another aim should be to improve the treatment of "classic" radiation oncology patients by ideas of palliative care. The further development of palliative care in Germany should not take place without the participation of radiooncologists. This will meet the interests of palliative care and radiotherapy and-most importantly-the patients' interests.

Building Bridges, Paediatric Palliative Care in Belgium: A secondary data analysis of annual paediatric liaison team reports from 2010 to 2014.

PubMed

Friedel, Marie; Brichard, Bénédicte; Fonteyne, Christine; Renard, Marleen; Misson, Jean-Paul; Vandecruys, Els; Tonon, Corinne; Verfaillie, Françoise; Hendrijckx, Georgette; Andersson, Nathalie; Ruysseveldt, Ilse; Moens, Katrien; Degryse, Jean-Marie; Aujoulat, Isabelle

2018-05-22

Although continuity of care in paediatric palliative care (PPC) is considered to be an essential element of quality of care, it's implementation is challenging. In Belgium, five paediatric liaison teams (PLTs) deliver palliative care. A Royal Decree issued in 2010 provides the legal framework that defines the PLTs' missions, as ensuring continuity of curative and palliative care between the hospital and home for children diagnosed with life-limiting conditions. This national study describes how PLTs ensure continuity of care by describing their activities and the characteristics of the children they cared for from 2010 to 2014. Thematic analysis of open-ended questions was performed and descriptive statistics of aggregated data issued from annual reports, collected by the Belgian Ministry of Public Health through the Cancer Plan was used. A review panel of PLT members discussed the results and contributed to their interpretation. Between 2010 and 2014, 3607 children and young adults (0-21 years) were cared for by the 5 Belgian PLTs (mean of 721/per year). Of these children, 50% were diagnosed with an oncological disease, 27% with a neurological or metabolic disease. Four hundred and twenty eight (428) children had died. For 51% of them, death took place at home. PLT activities include coordination; communication; curative and palliative care; education; research and fundraising. Different perceptions of what constitutes a palliative stage, heterogeneity in reporting diagnosis and the current lack of specific valid indicators to report PPC activities were found. PLTs are offering highly individualised, flexible and integrated care from diagnosis to bereavement in all care settings. Improvements in data registration and implementation of outcome measures are foreseen.

Variation in palliative care of esophageal cancer in clinical practice: factors associated with treatment decisions.

PubMed

Opstelten, Jorrit L; de Wijkerslooth, Laetitia R H; Leenders, Max; Bac, Dirk Jan; Brink, Menno A; Loffeld, Boudewijn C A J; Meijnen-Bult, Mariëlle J F; Minderhoud, Itta M; Verhagen, Marc A M T; van Oijen, Martijn G H; Siersema, Peter D

2017-02-01

Various treatments are available for the palliation of esophageal cancer, but the optimal therapeutic approach is unclear. This study aimed to assess the palliative treatment modalities used in patients with inoperable esophageal cancer and to identify factors associated with treatment decisions. A population-based, retrospective cohort study was conducted using data from the nationwide Netherlands Cancer Registry and medical records of seven participating hospitals. Patients diagnosed with stage III-IV inoperable esophageal or gastric cardia cancer in the central part of the Netherlands between 2001 and 2010 were included. Logistic regression analyses were performed to identify determinants of treatment choices. In total, 736 patients were initially treated with best supportive care (21%), stent placement (19%), chemotherapy (18%), external beam radiotherapy (EBRT) (16%), brachytherapy (6%), a combination of EBRT and brachytherapy (6%), a combination of chemotherapy and EBRT (5%) or another treatment (9%). The palliative approach varied for disease stage (P < 0.01) and hospital of diagnosis (P < 0.01). Independent factors affecting treatment decisions were age, degree of dysphagia, tumor histology, tumor localization, disease stage, and hospital of diagnosis. For example, patients diagnosed in one hospital were less likely to be treated with EBRT than with stent placement compared to patients in another hospital (odds ratio 0.20, 95% confidence interval 0.07-0.59). In conclusion, the initial palliative approach of patients with inoperable esophageal cancer varies widely and is not only associated with patient- and disease-related factors, but also with hospital of diagnosis. These findings suggest a lack of therapeutic guidance and highlight the need for more evidence on palliative care strategies for esophageal cancer. © 2016 International Society for Diseases of the Esophagus.

The ethical and legal aspects of palliative sedation in severely brain-injured patients: a French perspective

PubMed Central

2011-01-01

To fulfill their crucial duty of relieving suffering in their patients, physicians may have to administer palliative sedation when they implement treatment-limitation decisions such as the withdrawal of life-supporting interventions in patients with poor prognosis chronic severe brain injury. The issue of palliative sedation deserves particular attention in adults with serious brain injuries and in neonates with severe and irreversible brain lesions, who are unable to express pain or to state their wishes. In France, treatment limitation decisions for these patients are left to the physicians. Treatment-limitation decisions are made collegially, based on the presence of irreversible brain lesions responsible for chronic severe disorders of consciousness. Before these decisions are implemented, they are communicated to the relatives. Because the presence and severity of pain cannot be assessed in these patients, palliative analgesia and/or sedation should be administered. However, palliative sedation is a complex strategy that requires safeguards to prevent a drift toward hastening death or performing covert euthanasia. In addition to the law on patients' rights at the end of life passed in France on April 22, 2005, a recent revision of Article 37 of the French code of medical ethics both acknowledges that treatment-limitation decisions and palliative sedation may be required in patients with severe brain injuries and provides legal and ethical safeguards against a shift towards euthanasia. This legislation may hold value as a model for other countries where euthanasia is illegal and for countries such as Belgium and Netherlands where euthanasia is legal but not allowed in patients incapable of asking for euthanasia but in whom a treatment limitation decision has been made. PMID:21303504

The National Tumor Association Foundation (ANT): A 30 year old model of home palliative care

PubMed Central

2010-01-01

Background Models of palliative care delivery develop within a social, cultural, and political context. This paper describes the 30-year history of the National Tumor Association (ANT), a palliative care organization founded in the Italian province of Bologna, focusing on this model of home care for palliative cancer patients and on its evaluation. Methods Data were collected from the 1986-2008 ANT archives and documents from the Emilia-Romagna Region Health Department, Italy. Outcomes of interest were changed in: number of patients served, performance status at admission (Karnofsky Performance Status score [KPS]), length of participation in the program (days of care provided), place of death (home vs. hospital/hospice), and satisfaction with care. Statistical methods included linear and quadratic regressions. A linear and a quadratic regressions were generated; the independent variable was the year, while the dependent one was the number of patients from 1986 to 2008. Two linear regressions were generated for patients died at home and in the hospital, respectively. For each regression, the R square, the unstandardized and standardized coefficients and related P-values were estimated. Results The number of patients served by ANT has increased continuously from 131 (1986) to a cumulative total of 69,336 patients (2008), at a steady rate of approximately 121 additional patients per year and with no significant gender difference. The annual number of home visits increased from 6,357 (1985) to 904,782 (2008). More ANT patients died at home than in hospice or hospital; this proportion increased from 60% (1987) to 80% (2007). The rate of growth in the number of patients dying in hospital/hospice was approximately 40 patients/year (p < 0.01), vs. approximately 177 patients/year for patients who died at home. The percentage of patients with KPS < 40 at admission decreased from 70% (2003) to 30% (2008); the percentage of patients with KPS > 40 increased. Mean days of care for patients with KPS > 40 exceeded mean days for patients with KPS < 40 (p < 0.001). Patients and caregivers reported high satisfaction with care in each year of assessment; in 2008, among 187 interviewed caregivers, 95% judged the quality of doctors' assistance, and 91% judged the quality of nurses' assistance, to be "optimal." Conclusions The ANT home care model of palliative care delivery has been well-received, with progressively growing numbers of patients served. It has resulted in a greater proportion of home deaths and in patients' accessing palliative care at an earlier point in the disease trajectory. Changes in ANT chronicle palliative care trends in general. PMID:20529310

Prevalence of upper gastrointestinal symptoms and their influence on nutritional state and performance status in patients with different primary tumors receiving palliative care.

PubMed

Bovio, Giacomo; Fonte, Maria Luisa; Baiardi, Paola

2014-02-01

The aim of this study was to investigate the relationship between gastrointestinal symptoms, nutritional balance, and performance status in patients receiving palliative care for advanced cancers originating in different sites. We studied a total of 105 patients. Upper gastrointestinal symptoms, Eastern Cooperative Oncology Group Performance Status score (ECOG-PS), dietary intakes, anthropometric measures, and some serum proteins were determined. Unintentional weight loss, alterations in anthropometric measures, and highest number of symptoms were greater in patients with lung and stomach cancer. No differences were found in ECOG-PS according to cancer site. Patients with gastric or lung cancer have most evidence of protein-calorie malnutrition and a higher prevalence of upper gastrointestinal symptoms. The performance status is not affected by tumor site. Early nutritional support should be planned for all patients with cancer, especially for patients with gastric or lung cancer.

Quality of life assessment in advanced cancer patients treated at home, an inpatient unit, and a day care center

PubMed Central

Leppert, Wojciech; Majkowicz, Mikolaj; Forycka, Maria; Mess, Eleonora; Zdun-Ryzewska, Agata

2014-01-01

Aim of the study To assess quality of life (QoL) in cancer patients treated at home, at an in-patient palliative care unit (PCU), and at a day care center (DCC). Patients and methods QoL was assessed in advanced cancer patients at baseline and after 7 days of symptomatic treatment using the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Core 15-Palliative Care (EORTC QLQ-C15-PAL), the Edmonton Symptom Assessment System (ESAS), and the Karnofsky Performance Status (KPS) scale. Results A total of 129 patients completed the study, with 51 patients treated at home, 51 patients treated at the PCU, and 27 patients at DCC. In the EORTC QLQ-C15-PAL, improvement in functional and symptom scales was observed except in physical functioning and fatigue levels; patients at DCC had a better physical functioning, global QoL, appetite, and fatigue levels. In the ESAS, improvement in all items was found except for drowsiness levels, which was stable in patients treated at DCC and deteriorated in home and PCU patients. Higher activity, better appetite and well-being, and less drowsiness were observed in patients treated at DCC. KPS was better in DCC patients compared to those treated at home and at the PCU; the latter group deteriorated. Conclusions QoL improved in all patient groups, with better results in DCC patients and similar scores in those staying at home and at the PCU. Along with clinical assessment, baseline age, KPS, physical and emotional functioning may be considered when assigning patients to care at a DCC, PCU, or at home. PMID:24855379

Palliative Care: Delivering Comprehensive Oncology Nursing Care.

PubMed

Dahlin, Constance

2015-11-01

To describe palliative care as part of comprehensive oncology nursing care. A review of the palliative care, oncology, and nursing literature over the past 10 years. Palliative care is mandated as part of comprehensive cancer care. A cancer diagnosis often results in distress in the physical, psychosocial, spiritual, and emotional domains of care. Oncology nurses are essential in providing palliative care from diagnosis to death to patients with cancer. They address the myriad aspects of cancer. With palliative care skills and knowledge, oncology nurses can provide quality cancer care. There are many opportunities in which oncology nurses can promote palliative care. Oncology nurses must obtain knowledge and skills in primary palliative care to provide comprehensive cancer care. Copyright © 2015 Elsevier Inc. All rights reserved.

Strategies for Development of Palliative Care From the Perspectives of General Population and Health Care Professionals: A Japanese Outreach Palliative Care Trial of Integrated Regional Model Study.

PubMed

Yoshida, Saran; Miyashita, Mitsunori; Morita, Tatsuya; Akizuki, Nobuya; Akiyama, Miki; Shirahige, Yutaka; Ichikawa, Takayuki; Eguchi, Kenji

2015-09-01

This study primarily aimed to identify future actions required to promote palliative care in Japan. The future actions regarded as effective by the general population were "improve physicians' skill in palliative care" (61%), "create a counseling center for cancer" (61%), and "improve nurses' skill in palliative care" (60%). In contrast, future actions regarded as effective by the health care professionals were "set up a Web site that provides information about cancer" (72%), "promote consultation with specialists in palliative care" (71%), and "open an outpatient department specializing in palliative care" (70%). The results suggest (1) development and maintenance of settings; (2) enhancement of palliative care education and training programs for health care providers; and (3) improvement in distributing information about cancer and regional palliative care resources to the general population. © The Author(s) 2014.

[Achievement and Future Direction of the PEACE Project - A National Education Project for Palliative Care Education].

PubMed

Kizawa, Yoshiyuki; Yamamoto, Ryo

2017-07-01

Although palliative care is assuming an increasingly important role in patient care, most physicians did not learn to provide palliative care during their medical training. To address these serious deficiencies in physician training in palliative care, government decided to provide basic palliative education program for all practicing cancer doctors as a national policy namely Palliative care Emphasis program on symptom management and Assessment for Continuous medical Education(PEACE). The program was 2-days workshop based on adult learning theory and focusing on symptom management and communication. In this 9 years, 4,888 educational workshop has been held, and 93,250 physicians were trained. In prospective observational study, both knowledges and difficulties practicing palliative care were significantly improved. In 2017, the new palliative care education program will be launched including combined program of e-learning and workshop to provide tailor made education based on learner's readiness and educational needs in palliative care.

Palliative sedation: not just normal medical practice. Ethical reflections on the Royal Dutch Medical Association's guideline on palliative sedation.

PubMed

Janssens, Rien; van Delden, Johannes J M; Widdershoven, Guy A M

2012-11-01

The main premise of the Royal Dutch Medical Association's (RDMA) guideline on palliative sedation is that palliative sedation, contrary to euthanasia, is normal medical practice. Although we do not deny the ethical distinctions between euthanasia and palliative sedation, we will critically analyse the guideline's argumentation strategy with which euthanasia is demarcated from palliative sedation. First, we will analyse the guideline's main premise, which entails that palliative sedation is normal medical treatment. After this, we will critically discuss three crucial propositions of the guideline that are used to support this premise: (1) the patient's life expectancy should not exceed 2 weeks; (2) the aim of the physician should be to relieve suffering and (3) expert consultation is optional. We will conclude that, if inherent problematic aspects of palliative sedation are taken seriously, palliative sedation is less normal than it is now depicted in the guideline.

Flemish palliative-care nurses' attitudes to palliative sedation: a quantitative study.

PubMed

Gielen, Joris; Van den Branden, Stef; Van Iersel, Trudie; Broeckaert, Bert

2012-09-01

Palliative sedation is an option of last resort to control refractory suffering. In order to better understand palliative-care nurses' attitudes to palliative sedation, an anonymous questionnaire was sent to all nurses (589) employed in palliative care in Flanders (Belgium). In all, 70.5% of the nurses (n = 415) responded. A large majority did not agree that euthanasia is preferable to palliative sedation, were against non-voluntary euthanasia in the case of a deeply and continuously sedated patient and considered it generally better not to administer artificial floods or fluids to such a patient. Two clusters were found: 58.5% belonged to the cluster of advocates of deep and continuous sedation and 41.5% belonged to the cluster of nurses restricting the application of deep and continuous sedation. These differences notwithstanding, overall the attitudes of the nurses are in accordance with the practice and policy of palliative sedation in Flemish palliative-care units.

Palliative Care in Heart Failure.

PubMed

Sood, Abhinav; Dobbie, Krista; Wilson Tang, W H

2018-04-19

This review illustrates the dynamic role of palliative care in heart failure management and encapsulates the commonly utilized pharmacologic and non-pharmacologic therapeutic strategies for symptom palliation in heart failure. In addition, we provide our experience regarding patient care issues common to the domain of heart failure and palliative medicine which are commonly encountered by heart failure teams. Addition of palliative care to conventional heart failure management plan results in improvement in quality of life, anxiety, depression, and spiritual well-being among patients. Palliative care should not be confused with hospice care. Palliative care teams should be involved early in the care of heart failure patients with the aims of improving symptom palliation, discussing goals of care and improving quality of life without compromising utilization of evidence-based heart failure therapies. A consensus on the appropriate timing of involvement and evidence for many symptom palliation therapies is still emerging.

A palliative care needs assessment of rural hospitals.

PubMed

Fink, Regina M; Oman, Kathleen S; Youngwerth, Jeanie; Bryant, Lucinda L

2013-06-01

Palliative care services are lacking in rural hospitals. Implementing palliative care services in rural and remote areas requires knowledge of available resources, specific barriers, and a commitment from the hospital and community. The purpose of the study was to determine awareness, knowledge, barriers, and resources regarding palliative care services in rural hospitals. A descriptive survey design used an investigator-developed needs assessment to survey 374 (40% response rate) health care providers (chief executive officers, chiefs of medical staff, chief nursing officers, and social worker directors) at 236 rural hospitals (<100 beds) in seven Rocky Mountain states. Significant barriers to integrating palliative care exist: lack of administrative support, mentorship, and access to palliative care resources; inadequate basic knowledge about palliative care strategies; and limited training/skills in palliative care. Having contractual relationships with local hospices is a key facilitator. Respondents (56%) want to learn more about palliative care, specifically focusing on pain management, communication techniques, and end-of-life care issues. Webinar and online courses were suggested as strategies to promote long distance learning. It is imperative for quality of care that rural hospitals have practitioners who are up to date on current evidence and practice within a palliative care framework. Unique challenges exist to implementing palliative care services in rural hospitals. Opportunities for informing rural areas focus around utilizing existing hospice resources and relationships, and favoring Web-based classes and online courses. The development of a multifaceted intervention to facilitate education about palliative care and cultivate palliative care services in rural settings is indicated.

Generalist palliative care in hospital - Cultural and organisational interactions. Results of a mixed-methods study.

PubMed

Bergenholtz, Heidi; Jarlbaek, Lene; Hølge-Hazelton, Bibi

2016-06-01

It can be challenging to provide generalist palliative care in hospitals, owing to difficulties in integrating disease-oriented treatment with palliative care and the influences of cultural and organisational conditions. However, knowledge on the interactions that occur is sparse. To investigate the interactions between organisation and culture as conditions for integrated palliative care in hospital and, if possible, to suggest workable solutions for the provision of generalist palliative care. A convergent parallel mixed-methods design was chosen using two independent studies: a quantitative study, in which three independent datasets were triangulated to study the organisation and evaluation of generalist palliative care, and a qualitative, ethnographic study exploring the culture of generalist palliative nursing care in medical departments. A Danish regional hospital with 29 department managements and one hospital management. Two overall themes emerged: (1) 'generalist palliative care as a priority at the hospital', suggesting contrasting issues regarding prioritisation of palliative care at different organisational levels, and (2) 'knowledge and use of generalist palliative care clinical guideline', suggesting that the guideline had not reached all levels of the organisation. Contrasting issues in the hospital's provision of generalist palliative care at different organisational levels seem to hamper the interactions between organisation and culture - interactions that appear to be necessary for the provision of integrated palliative care in the hospital. The implementation of palliative care is also hindered by the main focus being on disease-oriented treatment, which is reflected at all the organisational levels. © The Author(s) 2015.

Patterns of Palliative Care Referral in Patients Admitted With Heart Failure Requiring Mechanical Ventilation.

PubMed

Wiskar, Katie J; Celi, Leo Anthony; McDermid, Robert C; Walley, Keith R; Russell, James A; Boyd, John H; Rush, Barret

2018-04-01

Palliative care is recommended for advanced heart failure (HF) by several major societies, though prior studies indicate that it is underutilized. To investigate patterns of palliative care referral for patients admitted with HF exacerbations, as well as to examine patient and hospital factors associated with different rates of palliative care referral. Retrospective nationwide cohort analysis utilizing the National Inpatient Sample from 2006 to 2012. Patients referred to palliative care were compared to those who were not. Patients ≥18 years of age with a primary diagnosis of HF requiring mechanical ventilation (MV) were included. A cohort of non-HF patients with metastatic cancer was created for temporal comparison. Between 2006 and 2012, 74 824 patients underwent MV for HF. A referral to palliative care was made in 2903 (3.9%) patients. The rate of referral for palliative care in HF increased from 0.8% in 2006 to 6.4% in 2012 ( P < .01). In comparison, rate of palliative care referral in patients with cancer increased from 2.9% in 2006 to 11.9% in 2012 ( P < .01). In a multivariate logistic regression model, higher socioeconomic status (SES) was associated with increased access to palliative care ( P < .01). Racial differences were also observed in rates of referral to palliative care. The use of palliative care for patients with advanced HF increased during the study period; however, palliative care remains underutilized in this setting. Patient factors such as race and SES affect access to palliative care.

Evaluating Palliative Care Resources Available to the Public Using the Internet and Social Media.

PubMed

Claudio, Celeste H; Dizon, Zoelle B; October, Tessie W

2018-01-01

Accessible information about palliative care available to the public on the Internet is growing. We do not know whether this information is consistent with the current accepted definition of palliative care. To identify resources on the Internet and social media regarding palliative care and evaluate the information conveyed. A cross-sectional study of "palliative care" search results. Top 10 Google websites, top 10 most viewed YouTube videos, and social media platforms, Facebook and Twitter, were searched. The most popular Google websites were mostly from national organizations promoting palliative care, whose definitions of palliative care consistently mention "quality of life" and "relief from symptoms and stress." None of the websites mentioned children, and 77% cited palliative care as treatment for cancer with less focus on other diseases. No personal stories were included in Google websites, while 60% of YouTube videos included personal stories. Five main themes were generated from 266 YouTube video comments analyzed. The most common theme was emotionality, of which 91% were positive statements. Facebook and Twitter were mostly used by health-care professionals and not the public. Palliative care resources are mostly positive and consistent with the current definition of palliative care. Major Internet search engines such as Google and YouTube provide valuable insight into information the public receives about palliative care. Future development of Internet resources on palliative care should consider including children and emphasizing palliative care for all life-limiting illnesses.

Psychological Well-Being and Family Environment of Siblings of Children with Life Threatening Illness.

PubMed

Humphrey, Lisa M; Hill, Douglas L; Carroll, Karen W; Rourke, Mary; Kang, Tammy I; Feudtner, Chris

2015-11-01

The psychological well-being of siblings of children with life threatening illness remains largely uncharted. Pediatric cancer research suggests that a supportive family environment may protect the psychological well-being of siblings. We hypothesized that (1) siblings of pediatric palliative care patients would show clinical/behavioral scores that were elevated but that rates of serious psychopathology would be comparable to the general population of children their age; and (2) higher family functioning scores would be associated with lower clinical scores and higher adaptive scores for these siblings. We conducted an observational study with families in which a patient receiving palliative care had one or more siblings between the ages of 6 and 11. Parents completed the Behavioral Assessment System for Children, Second Edition (BASC-2) to assess the siblings' psychological well-being and the Family Assessment Device (FAD) to assess the family environment. Twenty-four parents reported data for 30 siblings. Only three siblings scored in the clinical range on a BASC-2 composite clinical scale, and 11 siblings scored in the at-risk range on one or more composite scales. Higher FAD scores predicted significantly higher externalization composite clinical scores (7.54, 95% CI: 1.12, 13.97, p < 0.05) and significantly higher behavioral composite scores (7.88, 95% CI: 1.55, 14.21, p < 0.05). Siblings of pediatric palliative care patients are not experiencing lower psychological well-being than the general population. The prediction that a positive family environment would be associated with higher levels of psychological health was supported.

Treatment of painful bone metastases in prostate and breast cancer patients with the therapeutic radiopharmaceutical rhenium-188-HEDP. Clinical benefit in a real-world study.

PubMed

Lange, Rogier; Overbeek, Floor; de Klerk, John M H; Pasker-de Jong, Pieternel C M; van den Berk, Alexandra M; Ter Heine, Rob; Rodenburg, Cees J; Kooistra, Anko; Hendrikse, N Harry; Bloemendal, Haiko J

2016-09-26

Rhenium-188-HEDP ((188)Re-HEDP) is an effective radiopharmaceutical for the palliative treatment of osteoblastic bone metastases. However, only limited data on its routine use are available and its effect on quality of life (QoL) has not been studied. Therefore, we evaluated the clinical benefit of (188)Re-HEDP in routine clinical care. Prostate or breast cancer patients with painful bone metastases receiving (188)Re-HEDP as a routine clinical procedure were eligible for evaluation. Clinical benefit was assessed in terms of efficacy and toxicity. Pain palliation and QoL were monitored using the visual analogue scale (VAS), corrected for opioid intake, and the EORTC QLQ-C30 Global health status/QoL-scale. Thrombocyte and leukocyte nadirs were used to assess haematological toxicity. 45 and 47 patients were evaluable for pain palliation and QoL, respectively. After a single injection of (188)Re-HEDP, the overall pain response rate was 69% and mean VAS-scores decreased relevantly and significantly (p < 0.05). Repeated treatment resulted in similar pain response. The overall QoL response rate was 68% and mean Global health status/QoL-scores increased relevantly and significantly. Haematological side effects were mild and transient. The clinically relevant response on pain and quality of life and the limited adverse events prove clinical benefit of treatment with (188)Re-HEDP and support its use in routine clinical care. Its effectiveness appears comparable to that of external beam radiotherapy.

The clinical effects of music therapy in palliative medicine.

PubMed

Gallagher, Lisa M; Lagman, Ruth; Walsh, Declan; Davis, Mellar P; Legrand, Susan B

2006-08-01

This study was to objectively assess the effect of music therapy on patients with advanced disease. Two hundred patients with chronic and/or advanced illnesses were prospectively evaluated. The effects of music therapy on these patients are reported. Visual analog scales, the Happy/Sad Faces Assessment Tool, and a behavior scale recorded pre- and post-music therapy scores on standardized data collection forms. A computerized database was used to collect and analyze the data. Utilizing the Wilcoxon signed rank test and a paired t test, music therapy improved anxiety, body movement, facial expression, mood, pain, shortness of breath, and verbalizations. Sessions with family members were also evaluated, and music therapy improved families' facial expressions, mood, and verbalizations. All improvements were statistically significant (P<0.001). Most patients and families had a positive subjective and objective response to music therapy. Objective data were obtained for a large number of patients with advanced disease. This is a significant addition to the quantitative literature on music therapy in this unique patient population. Our results suggest that music therapy is invaluable in palliative medicine.

Improving Palliative Care Team Meetings: Structure, Inclusion, and "Team Care".

PubMed

Brennan, Caitlin W; Kelly, Brittany; Skarf, Lara Michal; Tellem, Rotem; Dunn, Kathleen M; Poswolsky, Sheila

2016-07-01

Increasing demands on palliative care teams point to the need for continuous improvement to ensure teams are working collaboratively and efficiently. This quality improvement initiative focused on improving interprofessional team meeting efficiency and subsequently patient care. Meeting start and end times improved from a mean of approximately 9 and 6 minutes late in the baseline period, respectively, to a mean of 4.4 minutes late (start time) and ending early in our sustainability phase. Mean team satisfaction improved from 2.4 to 4.5 on a 5-point Likert-type scale. The improvement initiative clarified communication about patients' plans of care, thus positively impacting team members' ability to articulate goals to other professionals, patients, and families. We propose several recommendations in the form of a team meeting "toolkit." © The Author(s) 2015.

Palliative care education for medical students: Differences in course evolution, organisation, evaluation and funding: A survey of all UK medical schools.

PubMed

Walker, Steven; Gibbins, Jane; Paes, Paul; Adams, Astrid; Chandratilake, Madawa; Gishen, Faye; Lodge, Philip; Wee, Bee; Barclay, Stephen

2017-06-01

A proportion of newly qualified doctors report feeling unprepared to manage patients with palliative care and end-of-life needs. This may be related to barriers within their institution during undergraduate training. Information is limited regarding the current organisation of palliative care teaching across UK medical schools. To investigate the evolution and structure of palliative care teaching at UK medical schools. Anonymised, web-based questionnaire. Settings/participants: Results were obtained from palliative care course organisers at all 30 UK medical schools. The palliative care course was established through active planning (13/30, 43%), ad hoc development (10, 33%) or combination of approaches (7, 23%). The place of palliative care teaching within the curriculum varied. A student-selected palliative care component was offered by 29/30 (97%). All medical schools sought student feedback. The course was reviewed in 26/30 (87%) but not in 4. Similarly, a course organiser was responsible for the palliative care programme in 26/30 but not in 4. A total of 22 respondents spent a mean of 3.9 h (median 2.5)/week in supporting/delivering palliative care education (<1-16 h). In all, 17/29 (59%) had attended a teaching course or shared duties with a colleague who had done so. Course organisers received titular recognition in 18/27 (67%; no title 9 (33%); unknown 3 (11%)). An academic department of Palliative Medicine existed in 12/30 (40%) medical schools. Funding was not universally transparent. Palliative care teaching was associated with some form of funding in 20/30 (66%). Development, organisation, course evaluation and funding for palliative care teaching at UK medical schools are variable. This may have implications for delivery of effective palliative care education for medical students.

[Organization of palliative medicine in the clinic and ambulatory care].

PubMed

Jonen-Thielemann, I

1998-01-01

To describe the idea of palliative medicine and its forms of organization in the inpatient and outpatient sectors, and in particular to describe the projects for palliative medicine at the University of Cologne, specifying costs and the 1996 statistics of the palliative care unit. Palliative medicine comprises the alleviative treatment, nursing and accompaniment of the incurably ill in the far advanced stage of disease, including the physical, mental, psychic, spiritual and social domains. The underlying concept is "to live until you die" and dying in dignity at the natural end of life. Facilities for palliative medicine in the hospital: palliative care unit, palliative care sector, palliative care consultation service; forms of organization in the outpatient sector: home care service, domiciliary palliative care service and outpatient hospice; independent facilities: hospices-inpatient and part-inpatient. Costs of palliative treatment in the projects of the University of Cologne: palliative care unit: 457.33 DM for one patient per day, 12,092.20 DM average costs per patient admission in 1996 (n = 186); home care service: 200.00 DM flat rate per patient per day; inpatient hospice in Cologne-Heimersdorf: 300.00 DM for one patient per day (home care service and hospice entail additional costs for medical treatment, medication and nursing accessories). Palliative medicine is expensive; only a few patients have the benefit of this; relatives may suppose to be relieved of the burden of their responsibilities; however: the severely ill and dying patients of the hospital experience the best possible care at home or in a "family atmosphere"; gain in experience of palliative medicine and multiplier function, research; awaking our society to thoughts of their own hour of death and what comes after it.

What Makes a Good Palliative Care Physician? A Qualitative Study about the Patient’s Expectations and Needs when Being Admitted to a Palliative Care Unit

PubMed Central

Masel, Eva K; Kitta, Anna; Huber, Patrick; Rumpold, Tamara; Unseld, Matthias; Schur, Sophie; Porpaczy, Edit; Watzke, Herbert H

2016-01-01

Objective The aims of the study were to examine a) patients’ knowledge of palliative care, b) patients’ expectations and needs when being admitted to a palliative care unit, and c) patient’s concept of a good palliative care physician. Methods The study was based on a qualitative methodology, comprising 32 semistructured interviews with advanced cancer patients admitted to the palliative care unit of the Medical University of Vienna. Interviews were conducted with 20 patients during the first three days after admission to the unit and after one week, recorded digitally, and transcribed verbatim. Data were analyzed using NVivo 10 software, based on thematic analysis enhanced with grounded theory techniques. Results The results revealed four themes: (1) information about palliative care, (2) supportive care needs, (3) being treated in a palliative care unit, and (4) qualities required of palliative care physicians. The data showed that patients lack information about palliative care, that help in social concerns plays a central role in palliative care, and attentiveness as well as symptom management are important to patients. Patients desire a personal patient-physician relationship. The qualities of a good palliative care physician were honesty, the ability to listen, taking time, being experienced in their field, speaking the patient’s language, being human, and being gentle. Patients experienced relief when being treated in a palliative care unit, perceived their care as an interdisciplinary activity, and felt that their burdensome symptoms were being attended to with emotional care. Negative perceptions included the overtly intense treatment. Conclusions The results of the present study offer an insight into what patients expect from palliative care teams. Being aware of patient’s needs will enable medical teams to improve professional and individualized care. PMID:27389693

Palliative care professionals' willingness to perform euthanasia or physician assisted suicide.

PubMed

Zenz, Julia; Tryba, Michael; Zenz, Michael

2015-11-14

Euthanasia and physician assisted suicide (PAS) are highly debated upon particularly in the light of medical advancement and an aging society. Little is known about the professionals' willingness to perform these practices particularly among those engaged in the field of palliative care and pain management. Thus a study was performed among those professionals. An anonymous questionnaire was handed out to all participants of a palliative care congress and a pain symposium in 2013. The questionnaire consisted of 8 questions regarding end of life decisions. Proposed patient vignettes were used. A total of 470 eligible questionnaires were returned, 198 by physicians, 272 by nurses. The response rate was 64 %. The majority of professionals were reluctant to perform euthanasia or PAS: 5.3 % of the respondents would be willing to perform euthanasia on a patient with a terminal illness if asked to do so. The reluctance grew in case of a patient with a non-terminal illness. The respondents were more willing to perform PAS than euthanasia. Nurses were more reluctant to take action as opposed to the physicians. The majority of the respondents would attempt to treat the patient's symptoms first before considering life-ending measures. As regards any decision making process the majority would consult with a colleague. This is the first German study to ask about the willingness of professionals to take action as regards euthanasia and PAS without biased phrasing. As opposed to the general acceptance that is respectively high, the actual willingness to perform life-ending measures is low. The German debate on physician assisted suicide and its possible legalization should also incorporate clarifications regarding the responsibility who should eventually perform these acts.

Palliative surgery for head and neck cancer with extensive skin involvement.

PubMed

Jang, David W; Teng, Marita S; Ojo, Bukola; Genden, Eric M

2013-05-01

To evaluate the role of regional and free tissue transfer for the palliative management of head and neck cancer with extensive skin involvement. Case Series. A retrospective review was performed of patients treated for head and neck cancer with involvement of the skin at the Mount Sinai Medical Center over a 5-year period (2006-2010). Only patients with extensive skin involvement and unresectable tumors who underwent palliative resection and reconstruction were included in the review. Subjects were analyzed for age, gender, performance status, primary site, tumor histology, extent of invasion, type of reconstruction, hospital course, wound complications, adjuvant therapy, survival, and cause of death. Twenty-five patients met the inclusion criteria for the review. Fourteen patients (56%) underwent regional flap reconstruction, and 11 patients (44%) underwent free flap reconstruction. The average length of stay was 7 days. Twenty-four patients (96%) had a medically uncomplicated postoperative hospital course. Nineteen patients (76%) were treated with adjuvant palliative radiotherapy and/or chemotherapy. Long-term follow-up was achieved for 19 patients. The median follow up in this group was 9.5 months. Eleven of the 21 patients (52%) developed wound complications postoperatively. Eight of these were minor wound dehiscences, while three developed major wound complications. Four patients (16%) had distant metastasis at the time of surgery, and the median time to develop distant metastases after surgery was 6 months. Median survival time was 9.5 months. Twenty-two patients (88%) were discharged in the care of their families with appropriate pain management and without the need for extensive wound care. For unresectable tumors with extensive skin involvement, palliative resection and reconstruction is a reasonable treatment option. Although survival may not be affected, addressing the odor, bleeding, pain, and infection associated with skin involvement has the potential to improve a patient's quality of life. 4. Copyright © 2013 The American Laryngological, Rhinological and Otological Society, Inc.

The Determinants of Place of Death: An Evidence-Based Analysis

PubMed Central

Costa, V

2014-01-01

Background According to a conceptual model described in this analysis, place of death is determined by an interplay of factors associated with the illness, the individual, and the environment. Objectives Our objective was to evaluate the determinants of place of death for adult patients who have been diagnosed with an advanced, life-limiting condition and are not expected to stabilize or improve. Data Sources A literature search was performed using Ovid MEDLINE, Ovid MEDLINE In-Process and Other Non-Indexed Citations, Ovid Embase, EBSCO Cumulative Index to Nursing & Allied Health Literature (CINAHL), and EBM Reviews, for studies published from January 1, 2004, to September 24, 2013. Review Methods Different places of death are considered in this analysis—home, nursing home, inpatient hospice, and inpatient palliative care unit, compared with hospital. We selected factors to evaluate from a list of possible predictors—i.e., determinants—of death. We extracted the adjusted odds ratios and 95% confidence intervals of each determinant, performed a meta-analysis if appropriate, and conducted a stratified analysis if substantial heterogeneity was observed. Results From a literature search yielding 5,899 citations, we included 2 systematic reviews and 29 observational studies. Factors that increased the likelihood of home death included multidisciplinary home palliative care, patient preference, having an informal caregiver, and the caregiver's ability to cope. Factors increasing the likelihood of a nursing home death included the availability of palliative care in the nursing home and the existence of advance directives. A cancer diagnosis and the involvement of home care services increased the likelihood of dying in an inpatient palliative care unit. A cancer diagnosis and a longer time between referral to palliative care and death increased the likelihood of inpatient hospice death. The quality of the evidence was considered low. Limitations Our results are based on those of retrospective observational studies. Conclusions The results obtained were consistent with previously published systematic reviews. The analysis identified several factors that are associated with place of death. PMID:26351550

Development and validation of a casemix classification to predict costs of specialist palliative care provision across inpatient hospice, hospital and community settings in the UK: a study protocol

PubMed Central

Guo, Ping; Dzingina, Mendwas; Firth, Alice M; Davies, Joanna M; Douiri, Abdel; O’Brien, Suzanne M; Pinto, Cathryn; Pask, Sophie; Higginson, Irene J; Eagar, Kathy; Murtagh, Fliss E M

2018-01-01

Introduction Provision of palliative care is inequitable with wide variations across conditions and settings in the UK. Lack of a standard way to classify by case complexity is one of the principle obstacles to addressing this. We aim to develop and validate a casemix classification to support the prediction of costs of specialist palliative care provision. Methods and analysis Phase I: A cohort study to determine the variables and potential classes to be included in a casemix classification. Data are collected from clinicians in palliative care services across inpatient hospice, hospital and community settings on: patient demographics, potential complexity/casemix criteria and patient-level resource use. Cost predictors are derived using multivariate regression and then incorporated into a classification using classification and regression trees. Internal validation will be conducted by bootstrapping to quantify any optimism in the predictive performance (calibration and discrimination) of the developed classification. Phase II: A mixed-methods cohort study across settings for external validation of the classification developed in phase I. Patient and family caregiver data will be collected longitudinally on demographics, potential complexity/casemix criteria and patient-level resource use. This will be triangulated with data collected from clinicians on potential complexity/casemix criteria and patient-level resource use, and with qualitative interviews with patients and caregivers about care provision across difference settings. The classification will be refined on the basis of its performance in the validation data set. Ethics and dissemination The study has been approved by the National Health Service Health Research Authority Research Ethics Committee. The results are expected to be disseminated in 2018 through papers for publication in major palliative care journals; policy briefs for clinicians, commissioning leads and policy makers; and lay summaries for patients and public. Trial registration number ISRCTN90752212. PMID:29550781

Development and validation of a casemix classification to predict costs of specialist palliative care provision across inpatient hospice, hospital and community settings in the UK: a study protocol.

PubMed

Guo, Ping; Dzingina, Mendwas; Firth, Alice M; Davies, Joanna M; Douiri, Abdel; O'Brien, Suzanne M; Pinto, Cathryn; Pask, Sophie; Higginson, Irene J; Eagar, Kathy; Murtagh, Fliss E M

2018-03-17

Provision of palliative care is inequitable with wide variations across conditions and settings in the UK. Lack of a standard way to classify by case complexity is one of the principle obstacles to addressing this. We aim to develop and validate a casemix classification to support the prediction of costs of specialist palliative care provision. Phase I: A cohort study to determine the variables and potential classes to be included in a casemix classification. Data are collected from clinicians in palliative care services across inpatient hospice, hospital and community settings on: patient demographics, potential complexity/casemix criteria and patient-level resource use. Cost predictors are derived using multivariate regression and then incorporated into a classification using classification and regression trees. Internal validation will be conducted by bootstrapping to quantify any optimism in the predictive performance (calibration and discrimination) of the developed classification. Phase II: A mixed-methods cohort study across settings for external validation of the classification developed in phase I. Patient and family caregiver data will be collected longitudinally on demographics, potential complexity/casemix criteria and patient-level resource use. This will be triangulated with data collected from clinicians on potential complexity/casemix criteria and patient-level resource use, and with qualitative interviews with patients and caregivers about care provision across difference settings. The classification will be refined on the basis of its performance in the validation data set. The study has been approved by the National Health Service Health Research Authority Research Ethics Committee. The results are expected to be disseminated in 2018 through papers for publication in major palliative care journals; policy briefs for clinicians, commissioning leads and policy makers; and lay summaries for patients and public. ISRCTN90752212. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

[Resection of juxtahilar bile duct carcinoma instead of palliative drainage of the biliary tract].

PubMed

Pichlmayr, R; Lehr, L; Ziegler, H

1983-01-01

Instead of the widely recommended approach of treating hilar carcinoma of the bile ducts by simple palliative biliary drainage, step by step a policy of primarily aiming at resection for cure has been adopted. So far in 11 out of 22 patients excision of the tumor was possible by resection of the hepatic duct confluence; in 4 cases a left hemihepatectomy had to be added because of carcinomatous infiltration of the left liver lobe or the left hepatic artery. The multiple bile duct openings remaining after resection of such tumors were reconstructed to one or two orifices and a bi- or unilateral Roux-en-Y cholangiojejunal anastomosis performed. In further 3 cases orthotopic liver transplantation was necessary to remove all visibly infiltrated tissue. In the remaining 8 patients because of documented extrahepatic carcinomatous spread palliative biliary drainage by a percutaneous U-tube or an endoprothesis was indeed considered the only reasonable measure. Despite the relatively high resectional rate of 60% and the extensive operations performed early mortality was confined to one patient who succumbed to septic endocarditis 6 weeks after the operation. At present the longest postoperative interval without recurrence amounts to 3 1/2 years. Nine patients free of recurrent disease are in perfect health; in 3 patients in whom a recurrence was observed after 1/2, 1 1/2 and 2 years meanwhile palliation was perfect. In contrast all patients with unresected tumors but carrying draining stents suffered from cholangitis and after 1 1/2 years all but one had died. In conclusion resectional therapy for hilar carcinoma seems possible with acceptable risk. Since only resection can provide potential cure and also palliation was better than that achieved by draining tubes a more aggressive attitude to the treatment of these lesions is advocated from our experience.

International recommendations for outpatient palliative care and prehospital palliative emergencies – a prospective questionnaire-based investigation

PubMed Central

2013-01-01

Background To determine the international recommendations and current practices for the treatment and prevention of palliative emergencies. The primary goal of the study was to gather information from experts on their nationally practised concepts. Methods One hundred and fifty self-report surveys were distributed by email to selected leading experts (palliative and emergency medical care) in Europe, North and South America, Africa, Asia, and Australia. An expert in this context was defined as an author of an article that was ranked by three reviewers as relevant to outpatient palliative and emergency medical . Results The total response rate was 61% (n = 92 experts). Survey responses were obtained from 35 different countries. The following standards in the treatment of palliative emergencies were recommended: (1) early integration of “Palliative Care Teams” (PCTs) and basic outpatient palliative care systems, (2) end-of-life discussions, (3) defined emergency medical documents, drug boxes, and “Do not attempt resuscitation” orders and (4) emergency medical training (physicians and paramedics). Conclusions This study detected structurally and nationally differences in outpatient palliative care regarding the treatment of palliative emergencies. Accordingly, these differences should be discussed and adapted to the respective specifications of individual single countries. A single established outpatient palliative emergency medical care concept may be the basis for an overall out-of-hospital palliative care system. PMID:23432905

Palliative Care in Kazakhstan.

PubMed

Kunirova, Gulnara; Shakenova, Ainur

2018-02-01

In Kazakhstan, like most ex-Soviet Union countries palliative care began in the late 1990s with the opening of the Almaty Hospice in 1999. Since that time, several palliative care services have opened in urban centers, but there is little coverage in rural areas. Palliative care has grown because of the collaborative work of Parliament leaders, Ministry of Health, local governments officials, Public Health Higher School, National Center for Health Development, academic medical institutions, oncology and palliative care experts, NGOs, Soros Foundation Kazakhstan, and international experts. A National Palliative Care Strategy provides the legislative framework that mandates the components of palliative that must be available at no cost for patients living with cancer. Palliative care courses are provided in several of the medical universities and nursing schools with practical training in local hospices who also offer seminars each year to practicing health care professionals. There is no "palliative care" or "palliative medicine" specialty in the national classifier of specialties. There are a number of palliative care specialists who participated in various training courses outside Kazakhstan. Oral morphine is not registered or available in the country, and patients must depend on injectable opioids or patches. Going forward, additional policies, increased public awareness, education of health care professionals, access to oral opioids, and more inpatient, home care, and day care services are needed. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Integration of Palliative Care Into Comprehensive Cancer Treatment at Moi Teaching and Referral Hospital in Western Kenya

PubMed Central

Kipsang, Susan; Gramelspacher, Gregory; Choi, Eunyoung; Brown, Colleen; Hill, Adam B.; Loehrer, Patrick J.; Busakhala, Naftali; Chite Asirwa, F.

2015-01-01

Purpose The prognosis for the majority of patients with cancer in Kenya is poor, with most patients presenting with advanced disease. In addition, many patients are unable to afford the optimal therapies required. Therefore, palliative care is an essential part of comprehensive cancer care. This study reviews the implementation of a palliative care service based at the Moi Teaching and Referral Hospital in Eldoret, Kenya, and describes the current scope and challenges of providing palliative care services in an East African tertiary public referral hospital. Methods This is a review of the palliative care clinical services at the only tertiary public referral hospital in western Kenya from January 2012 through September 2014. Palliative care team members documented each patient's encounter on standardized palliative care assessment forms; data were then entered into the Academic Model Providing Access to Health Care (AMPATH)-Oncology database. Interviews were also conducted to identify current challenges and opportunities for program improvement. Results This study documents the implementation of a palliative care service line in Eldoret, Kenya. Barriers to providing optimal palliative cancer care include distance to pharmacies that stock opioids, limited selection of opioid preparations, education of health care workers in palliative care, access to palliative chemoradiation, and limited availability of outpatient and inpatient hospice services. Conclusion Palliative care services in Eldoret, Kenya, have become a key component of its comprehensive cancer treatment program. PMID:28804768

Integration of Palliative Care Into Comprehensive Cancer Treatment at Moi Teaching and Referral Hospital in Western Kenya.

PubMed

Cornetta, Kenneth; Kipsang, Susan; Gramelspacher, Gregory; Choi, Eunyoung; Brown, Colleen; Hill, Adam B; Loehrer, Patrick J; Busakhala, Naftali; Chite Asirwa, F

2015-10-01

The prognosis for the majority of patients with cancer in Kenya is poor, with most patients presenting with advanced disease. In addition, many patients are unable to afford the optimal therapies required. Therefore, palliative care is an essential part of comprehensive cancer care. This study reviews the implementation of a palliative care service based at the Moi Teaching and Referral Hospital in Eldoret, Kenya, and describes the current scope and challenges of providing palliative care services in an East African tertiary public referral hospital. This is a review of the palliative care clinical services at the only tertiary public referral hospital in western Kenya from January 2012 through September 2014. Palliative care team members documented each patient's encounter on standardized palliative care assessment forms; data were then entered into the Academic Model Providing Access to Health Care (AMPATH)-Oncology database. Interviews were also conducted to identify current challenges and opportunities for program improvement. This study documents the implementation of a palliative care service line in Eldoret, Kenya. Barriers to providing optimal palliative cancer care include distance to pharmacies that stock opioids, limited selection of opioid preparations, education of health care workers in palliative care, access to palliative chemoradiation, and limited availability of outpatient and inpatient hospice services. Palliative care services in Eldoret, Kenya, have become a key component of its comprehensive cancer treatment program.

Performance and palliative care: a drama module for medical students.

PubMed

Jeffrey, Ewan James; Goddard, Jen; Jeffrey, David

2012-12-01

This paper describes an innovative 2 weeks module for medical students facilitated by drama educators and a palliative medicine doctor. The module incorporates drama, end-of-life care, teamwork and reflective practice. The module contents, practical aspects of drama teaching and learning outcomes are discussed. Various themes emerged from a study of Harold Pinter's play, The Caretaker, which were relevant to clinical practice: silence, power, communication, uncertainty and unanswered questions. Drama teaching may be one way of enhancing students' confidence, increasing self- awareness, developing ethical thinking and fostering teamworking.

Palliative peritoneal dialysis: Implementation of a home care programme for terminal patients treated with peritoneal dialysis (PD).

PubMed

Gorrin, Maite Rivera; Teruel-Briones, José Luis; Vion, Victor Burguera; Rexach, Lourdes; Quereda, Carlos

2015-01-01

Terminal-stage patients on peritoneal dialysis (PD) are often transferred to haemodialysis as they are unable to perform the dialysis technique themselves since their functional capacities are reduced. We present our experience with five patients on PD with a shortterm life-threatening condition, whose treatment was shared by primary care units and who were treated with a PD modality adapted to their circumstances, which we call Palliative Peritoneal Dialysis. Copyright © 2015. Published by Elsevier España, S.L.U.

Palliative care and pediatric surgical oncology.

PubMed

Inserra, Alessandro; Narciso, Alessandra; Paolantonio, Guglielmo; Messina, Raffaella; Crocoli, Alessandro

2016-10-01

Survival rate for childhood cancer has increased in recent years, reaching as high as 70% in developed countries compared with 54% for all cancers diagnosed in the 1980s. In the remaining 30%, progression or metastatic disease leads to death and in this framework palliative care has an outstanding role though not well settled in all its facets. In this landscape, surgery has a supportive actor role integrated with other welfare aspects from which are not severable. The definition of surgical palliation has moved from the ancient definition of noncurative surgery to a group of practices performed not to cure but to alleviate an organ dysfunction offering the best quality of life possible in all the aspects of life (pain, dysfunctions, caregivers, psychosocial, etc.). To emphasize this aspect a more modern definition has been introduced: palliative therapy in whose context is comprised not only the care assistance but also the plans of care since the onset of illness, teaching the matter to surgeons in training and share paths. Literature is very poor regarding surgical aspects specifically dedicated and all researches (PubMed, Google Scholar, and Cochrane) with various meshing terms result in a more oncologic and psychosocial effort. Copyright © 2016 Elsevier Inc. All rights reserved.

Palliative Care in Advanced Cancer Patients: How and When?

PubMed Central

Yennurajalingam, Sriram

2012-01-01

Cancer patients develop severe physical and psychological symptoms as a result of their disease and treatment. Their families commonly suffer great emotional distress as a result of caregiving. Early palliative care access can improve symptom control and quality of life and reduce the cost of care. Preliminary results show that early palliative care access can also extend survival. Unfortunately, only a minority of cancer centers in the U.S. have the two most important resources for palliative care delivery: outpatient palliative care centers and inpatient palliative care units. In this article, we use a case presentation to discuss the impact of early palliative care access in light of the currently available evidence, and we recommend ways to improve early access to palliative care through education and research. PMID:22252934

The impact of palliative care training for oncologists and integrative palliative service in a public-funded hospital cluster-a retrospective cohort study.

PubMed

Lam, Pak-Lun; Lam, Tai-Chung; Choi, Cheuk-Wai; Lee, Anne Wing-Mui; Yuen, Kwok-Keung; Leung, To-Wai

2018-05-01

Oncological care of advanced cancer patients was provided by multiple departments in Hong Kong. One of these departments, the clinical oncology department (COD), introduced systematic palliative care training for its oncologists since 2002. The COD was recognized as a European Society for Medical Oncology (ESMO) Designated Centre of Integrated Oncology and Palliative Care since 2009. This retrospective cohort study aims to review the impact of integrative training and service on palliative care coverage and outcome. Clinical information, palliative service provision, and end-of-life outcomes of patients who passed away from lung, colorectal, liver, stomach, or breast cancer in the Hong Kong West public hospital network during July 2015 to December 2015 were collected. A total of 307 patients were analyzed. Around half (49.2%) were attended primarily by COD, and 68.9% received palliative service. There are significantly fewer patients referred to palliative care from other departments (p < 0.001), with only 19.9% of this patient group receiving palliative referral. COD patients had longer palliative coverage before death (median 65 days versus 24 days, p < 0.001), higher chance of receiving end-of-life care at hospice units (36.4 versus 21.2%, p = 0.003), lower ICU admission (0.66 versus 5.1%, p = 0.02), and higher percentage of receiving strong opioid in the last 30 days of life (51.0 versus 28.9%, p < 0.001) compared to other departments. In multivariable analysis, COD being the primary care team (odds ratio 12.2, p < 0.001) was associated with higher palliative care coverage. The study results suggested that systematic palliative care training of oncologists and integrative palliative service model was associated with higher palliative service coverage and improved palliative care outcomes.

Coverage and development of specialist palliative care services across the World Health Organization European Region (2005-2012): Results from a European Association for Palliative Care Task Force survey of 53 Countries.

PubMed

Centeno, Carlos; Lynch, Thomas; Garralda, Eduardo; Carrasco, José Miguel; Guillen-Grima, Francisco; Clark, David

2016-04-01

The evolution of the provision of palliative care specialised services is important for planning and evaluation. To examine the development between 2005 and 2012 of three specialised palliative care services across the World Health Organization European Region - home care teams, hospital support teams and inpatient palliative care services. Data were extracted and analysed from two editions of the European Association for Palliative Care Atlas of Palliative Care in Europe. Significant development of each type of services was demonstrated by adjusted residual analysis, ratio of services per population and 2012 coverage (relationship between provision of available services and demand services estimated to meet the palliative care needs of a population). For the measurement of palliative care coverage, we used European Association for Palliative Care White Paper recommendations: one home care team per 100,000 inhabitants, one hospital support team per 200,000 inhabitants and one inpatient palliative care service per 200,000 inhabitants. To estimate evolution at the supranational level, mean comparison between years and European sub-regions is presented. Of 53 countries, 46 (87%) provided data. Europe has developed significant home care team, inpatient palliative care service and hospital support team in 2005-2012. The improvement was statistically significant for Western European countries, but not for Central and Eastern countries. Significant development in at least a type of services was in 21 of 46 (46%) countries. The estimations of 2012 coverage for inpatient palliative care service, home care team and hospital support team are 62%, 52% and 31% for Western European and 20%, 14% and 3% for Central and Eastern, respectively. Although there has been a positive development in overall palliative care coverage in Europe between 2005 and 2012, the services available in most countries are still insufficient to meet the palliative care needs of the population. © The Author(s) 2015.

National Trends (2009-2013) for Palliative Care Utilization for Patients Receiving Prolonged Mechanical Ventilation.

PubMed

Chatterjee, Kshitij; Goyal, Abhinav; Kakkera, Krishna; Harrington, Sarah; Corwin, Howard L

2018-05-04

Patients requiring mechanical ventilation have high morbidity and mortality. Providing palliative care services has been suggested as a way to improve comprehensive management of critically ill patients. We examined the trend in the utilization of palliative care among adults who require prolonged mechanical ventilation. Primary objectives were to determine the trend in palliative care utilization over time, predictors for palliative care utilization, and palliative care impact on hospital length of stay. Retrospective, cross-sectional study. The National Inpatient Sample data between 2009 and 2013 was used for this study. Adults (age ≥ 18 yr) who underwent prolonged mechanical ventilation (≥ 96 consecutive hr) were studied. Palliative care and mechanical ventilation were identified using the corresponding International Classification of Diseases, 9th revision, Clinical Modification, codes. A total of 1,751,870 hospitalizations with prolonged mechanical ventilation were identified between 2009 and 2013. The utilization of palliative care increased yearly from 6.5% in 2009 to 13.1% in 2013 (p < 0.001). Among the mechanically ventilated patients who died, palliative care increased from 15.9% in 2009 to 33.3% in 2013 (p < 0.001). Median hospital length of stay for patients with and without palliative care was 13 and 17 days, respectively (p < 0.001). Patients discharged to either short- or long-term care facilities had a shorter length of stay if palliative care was provided (15 vs 19 d; p < 0.001). The factors associated with a higher palliative care utilization included older age, malignancy, larger hospitals in urban areas, and teaching hospitals. Non-Caucasian race was associated with lower palliative care utilization. Among patients who undergo prolonged mechanical ventilation, palliative care utilization is increasing, particularly in patients who die during hospitalization. Using palliative care for mechanically ventilated patients who are discharged to either short- or long-term care facilities is associated with a shorter hospital length of stay.

Barriers to palliative care in people with chronic obstructive pulmonary disease in home care: A qualitative study of the perspective of professional caregivers.

PubMed

Mousing, Camilla A; Timm, Helle; Lomborg, Kirsten; Kirkevold, Marit

2018-02-01

To examine the experiences with palliative care in people with chronic obstructive pulmonary disease among professional caregivers in a Danish home care setting. Many patients with advanced chronic obstructive pulmonary disease depend on professional caregivers in the primary sector to provide assistance and care. However, chronic obstructive pulmonary disease patients receive no or only very little palliative care compared to patients with cancer although they may have many burdensome symptoms. Qualitative explorative study. In 2013-2014, ten professional caregivers from three districts in a Danish municipality were followed during home visits to patients with chronic obstructive pulmonary disease and individual interviews about palliative care were subsequently conducted. In 2014, 66 professional caregivers, representing eleven home care districts, participated in ten group discussions about palliative care needs in this group of patients. Data were analysed using qualitative descriptive analysis. The study revealed a nonawareness of palliative care for patients with chronic obstructive pulmonary disease among the professional caregivers who expressed vague understanding of palliative care and lack of knowledge about the disease. Organisational barriers, such as lack of time and continuity in patient care, lack of opportunity to discuss palliative care and lack of peer learning were experienced as challenging in the provision of palliative care. Nonawareness and organisational barriers led to difficulties in identifying palliative care needs and reluctance to initiate conversations about palliative care. The findings indicate a need for education, training and reflection among professional caregivers in home care. Also, organisational changes may be needed to reduce the barriers to palliative care. The findings uncovered barriers to palliative care that must be addressed. Targeted educational programmes and organisational changes may increase the ability to identify palliative care needs and initiate and evaluate palliative interventions. © 2017 John Wiley & Sons Ltd.

Measuring the quality of structure and process in end-of-life care from the bereaved family perspective.

PubMed

Morita, Tatsuya; Hirai, Kei; Sakaguchi, Yukihiro; Maeyama, Etsuko; Tsuneto, Satoru; Shima, Yasuo

2004-06-01

Measurement of the structure/process of care is the first step in improving end-of-life care. The primary aim of this study was to psychometrically validate an instrument for directly measuring the bereaved family's perception of the necessity for improvement in structural/procedural aspects of palliative care. Different sets of questionnaires were sent to 800 and 425 families who lost family members at one of 70 certified palliative care units in Japan in the development and validation phases, respectively, and 281 families of the latter group in the follow-up phase. The participants were requested to fill out a newly-developed Care Evaluation Scale (CES), along with outcome measures (the perceived experience and satisfaction levels) and potential covariates (the degree of expectation, the Center for Epidemiologic Studies Depression Scale, and the Social Desirability Scale). We obtained 485, 310, and 202 responses in the development, validation, and follow-up phases (response rates: 64%, 75%, and 72%, respectively). The 28-item CES had an overall Cronbach's coefficient alpha of 0.98; the intra-class correlation coefficient in the test-retest examination was 0.57. A confirmatory factor analysis revealed 10 subscales: physical care (by physicians, by nurses), psycho-existential care, help with decision-making (for patients, for family), environment, family burden, cost, availability, and coordination/consistency. The CES subscales were only moderately correlated with the perceived-experience and satisfaction levels of corresponding areas (r=0.36-0.52 and 0.39-0.60, respectively). The CES score was not significantly associated with the degree of expectation, the changes of depression, or the Social Desirability Scale. The CES is a useful tool to measure the bereaved family's perception of the necessity for improvement in structural/procedural aspects of palliative care. The advantages of the CES are: 1) it specifically evaluates the structure and process of care, 2) it directly identifies needed improvements, 3) it is not affected by the degree of expectation, depression, or social desirability, and 4) it has satisfactory psychometric properties.

Right ventricular exclusion and univentricular palliation for failed one and a half ventricle repair for Ebstein's anomaly.

PubMed

Sasikumar, Navaneetha; Krishna Manohar, Soman R; Philip, Saji; Cherian, Kottoorathu Mammen; Suresh Kumar, Raghavannair

2013-08-01

A 20 year-old male was diagnosed to have Ebstein's anomaly with severe right ventricular dysfunction. He was taken up for 1.5 ventricle repair. Post procedure, there was difficulty in weaning from cardiopulmonary bypass due to progressive right ventricular dilatation compromising the systemic output. An atrial septectomy did not help. Progressive right ventricular dilatation compressing the left ventricle, demonstrated on transoesophageal echocardiogram, prompted us to perform a right ventricular exclusion and univentricular palliation. The patient was successfully weaned off cardiopulmonary bypass and had a smooth postoperative recovery. Judicious use of right ventricular exclusion and univentricular palliation could be an effective bailout strategy in difficult surgical scenarios in Ebstein's anomaly. Copyright © 2012 Australian and New Zealand Society of Cardiac and Thoracic Surgeons (ANZSCTS) and the Cardiac Society of Australia and New Zealand (CSANZ). Published by Elsevier B.V. All rights reserved.

Minimally invasive palliative resection of lumbar epidural metastasis.

PubMed

Yew, Andrew; Kimball, Jon; Pezeshkian, Patrick; Lu, Daniel C

2013-07-01

Spinal metastatic lesions are the most common tumors encountered by spinal surgeons. As with procedures for degenerative disease, minimally invsive surgery techniques have been applied to minimize muscle and soft tissue destruction in procedures for tumor resection. Here, we present a 23-year-old female with radiculopathy and foot drop secondary to nerve root compression by epidural metastases from Ewing's sarcoma. This patient had a history of previous resection and instrumentation as well as multiple rounds of chemotherapy and radiation that failed to control her disease. The patient presented with three weeks of radicular pain and foot drop that was continuing to worsen at the time of her operation. The decision was therefore made to perform a palliative resection and decompression for relief of her progressive symptoms. In this video, we demonstrate a palliative tumor debulking and nerve root decompression utilizing an MIS approach. The video can be found here: http://youtu.be/tq4kbvKTebI.

Barriers to Access to Palliative Care

PubMed Central

Hawley, Pippa

2017-01-01

Despite significant advances in understanding the benefits of early integration of palliative care with disease management, many people living with a chronic life-threatening illness either do not receive any palliative care service or receive services only in the last phase of their illness. In this article, I explore some of the reasons for failure to provide palliative care services and recommend some strategies to overcome these barriers, emphasizing the importance of describing palliative care accurately. I provide language which I hope will help health care professionals of all disciplines explain what palliative care has to offer and ensure wider access to palliative care, early in the course of their illness. PMID:28469439

A Survey to Evaluate Facilitators and Barriers to Quality Measurement and Improvement: Adapting Tools for Implementation Research in Palliative Care Programs.

PubMed

Dy, Sydney M; Al Hamayel, Nebras Abu; Hannum, Susan M; Sharma, Ritu; Isenberg, Sarina R; Kuchinad, Kamini; Zhu, Junya; Smith, Katherine; Lorenz, Karl A; Kamal, Arif H; Walling, Anne M; Weaver, Sallie J

2017-12-01

Although critical for improving patient outcomes, palliative care quality indicators are not yet widely used. Better understanding of facilitators and barriers to palliative care quality measurement and improvement might improve their use and program quality. Development of a survey tool to assess palliative care team perspectives on facilitators and barriers to quality measurement and improvement in palliative care programs. We used the adapted Consolidated Framework for Implementation Research to define domains and constructs to select instruments. We assembled a draft survey and assessed content validity through pilot testing and cognitive interviews with experts and frontline practitioners for key items. We analyzed responses using a constant comparative process to assess survey item issues and potential solutions. We developed a final survey using these results. The survey includes five published instruments and two additional item sets. Domains include organizational characteristics, individual and team characteristics, intervention characteristics, and process of implementation. Survey modules include Quality Improvement in Palliative Care, Implementing Quality Improvement in the Palliative Care Program, Teamwork and Communication, Measuring the Quality of Palliative Care, and Palliative Care Quality in Your Program. Key refinements from cognitive interviews included item wording on palliative care team members, programs, and quality issues. This novel, adaptable instrument assesses palliative care team perspectives on barriers and facilitators for quality measurement and improvement in palliative care programs. Next steps include evaluation of the survey's construct validity and how survey results correlate with findings from program quality initiatives. Copyright © 2017 American Academy of Hospice and Palliative Medicine. All rights reserved.

Palliative Care Office Hours for Patients with Hematologic Malignancies: An Innovative Model for Symptom Management and Education.

PubMed

Foxwell, Anessa M; Moyer, Mary E; Casarett, David J; O'Connor, Nina R

2017-10-01

Palliative care programs are experiencing rapid growth, with demand for consults surpassing staffing. Innovative models are needed to equip nonpalliative care providers to manage basic palliative care issues. To develop a novel program of palliative care office hours for hematologic oncology advanced practice providers, and to evaluate its impact on palliative care consult volume and composition. A palliative care nurse practitioner or pharmacist was available for weekday office hours to all inpatient hematologic oncology advanced practice providers at an academic medical center to offer advice on pain, nonpain symptoms, and psychosocial distress. A retrospective study looking at outcome measures after six months of office hour utilization and palliative care consults from the hematologic oncology services. Palliative care office hours had a mean duration of 16 minutes per day (range 5 to 55). A mean of 11 patients were discussed per week (range 4 to 20). Pain, nausea, and anxiety were the issues most frequently raised. Of 299 patients discussed during office hours, 44 (14.7%) subsequently required a full palliative care consult. Overall, palliative care consults from the hematologic oncology services decreased from 19.6% to 10.2% of admissions (87/445 vs. 61/594, p < 0.001) with an increase in consults for goals of care. Office hours are an efficient way to address palliative care needs when demand for palliative care consults exceeds capacity. Office hours may serve an educational function as well, enabling primary teams to manage basic palliative care issues with increasing independence over time.

Current status of palliative care services in Indonesia: a literature review.

PubMed

Rochmawati, Erna; Wiechula, Rick; Cameron, Kate

2016-06-01

To review healthcare literature in relation to the provision of palliative care in Indonesia and to identify factors that may impact on palliative care development. People living with life-limiting illness benefit from access to palliative care services to optimize quality of life. Palliative care services are being expanded in developing countries but in Indonesia such services are in their infancy with many patients with life-limiting illnesses having access to appropriate health care compromised. Relevant healthcare databases including CINAHL, PubMed, Science Direct and Scopus were searched using the combinations of search terms: palliative care, terminal care, end-of-life care, Indonesia and nursing. A search of grey literature including Internet sites was also carried out. Nine articles were included in the review. Facilitating factors supporting the provision of palliative care included: a culture of strong familial support, government policy support, volunteering and support from regional organizations. Identified barriers to palliative care provision were a limited understanding of palliative care among healthcare professionals, the challenging geography of Indonesia and limited access to opioid medications. There are facilitators and barriers that currently impact on the development of palliative care in Indonesia. Strategies that can be implemented to improve palliative care include training of nurses and doctors in the primary care sector, integrating palliative care in undergraduate medical and nursing curriculum and educating family and community about basic care. Nurses and doctors who work in primary care can potentially play a role in supporting and educating family members providing direct care to patients with palliative needs. © 2016 International Council of Nurses.

Inpatient Palliative Care Consultation and 30-Day Readmissions in Oncology.

PubMed

DiMartino, Lisa D; Weiner, Bryan J; Hanson, Laura C; Weinberger, Morris; Birken, Sarah A; Reeder-Hayes, Katherine; Trogdon, Justin G

2018-01-01

Prior research indicates that hospice and palliative care delivered in outpatient settings are associated with reduced hospital readmissions for cancer patients. However, little is known about how inpatient palliative care affects readmissions in oncology. To examine associations among inpatient palliative care consultation, hospice use (discharge), and 30-day readmissions among patients with solid tumor cancers. We identified all live discharges from a large tertiary cancer hospital between 2010 and 2016. Palliative care consult data were abstracted from medical charts and linked to hospital encounter data. Propensity scores were used to match palliative care consult to usual care encounters. Modified Poisson regression models estimated adjusted relative risk (aRR) and 95% confidence intervals (CI) of 30-day readmissions and hospice discharge. We compared predicted probabilities of readmission for palliative care consultation with hospice discharge, without hospice discharge, and usual care. Of 8085 eligible encounters, 753 involved a palliative care consult. The likelihood of having a 30-day readmission did not differ between palliative care consult and usual care groups (p > 0.05). However, the palliative care consult group was more likely than usual care to have a hospice discharge (aRR = 4.09, 95% CI: 3.07-5.44). The predicted probability of 30-day readmission was lower when palliative care consultation was combined with hospice discharge compared to usual care or consultation with discharge to nonhospice postacute care (p < 0.001). The effect of inpatient palliative care on readmissions in oncology is largely driven by hospice enrollment. Strategies that combine palliative care consultation with hospice discharge may decrease hospital readmissions and improve cancer care quality.

Measuring patients' experiences with palliative care: the Consumer Quality Index Palliative Care.

PubMed

Claessen, Susanne J J; Francke, Anneke L; Sixma, Herman J; de Veer, Anke J E; Deliens, Luc

2012-12-01

The Consumer Quality Index Palliative Care (CQ-index PC) is a structured questionnaire for measuring the quality of palliative care from the perspective of care users. CQ-indices assess which care aspects need quality improvement by relating answers about actual care experiences to answers about the importance of certain aspects of care. To improve the chance that the new instrument has good content validity, a literature study and individual and group discussions were performed, and a steering committee was consulted to establish the instrument's face and content validity. The questionnaire was administered to patients with a life expectancy of 6 months or less and/or who were receiving palliative treatment. Descriptive analyses were carried out on the items about actual care experiences and the importance of care aspects, and on 'need for improvement' scores. 15 care organisations participated. 133 patients met the inclusion criteria (net response n=85). Patients considered the following aspects the most important: 'offering help in good time in acute situations', 'caregivers having the necessary expertise' and 'caregivers taking the patient seriously'. The three care aspects with the highest 'need for improvement' scores were: 'support when the patient feels depressed', 'support when the patient is anxious' and 'support when the patient has shortness of breath'. The CQ-index PC provides opportunities for care organisations to assess which care aspects have the highest priority for quality improvement within their organisation. Further research is needed to assess whether the instrument has enough discriminative power to assess differences between organisations.

Palliative wound care management strategies for palliative patients and their circles of care.

PubMed

Woo, Kevin Y; Krasner, Diane L; Kennedy, Bruce; Wardle, David; Moir, Olivia

2015-03-01

To provide information about palliative wound care management strategies for palliative patients and their circles of care. This continuing education activity is intended for physicians and nurses with an interest in skin and wound care. After participating in this educational activity, the participant should be better able to: 1. Recognize study findings, assessment tools, and non-pharmacologic strategies used for patients with palliative wounds. 2. Summarize pharmacologic and dressing treatment strategies used for wound care management of palliative patients. The principles of palliative wound care should be integrated along the continuum of wound care to address the whole person care needs of palliative patients and their circles of care, which includes members of the patient unit including family, significant others, caregivers, and other healthcare professionals that may be external to the current interprofessional team. Palliative patients often present with chronic debilitating diseases, advanced diseases associated with major organ failure (renal, hepatic, pulmonary, or cardiac), profound dementia, complex psychosocial issues, diminished self-care abilities, and challenging wound-related symptoms. This article introduces key concepts and strategies for palliative wound care that are essential for interprofessional team members to incorporate in clinical practice when caring for palliative patients with wounds and their circles of care.

The Worldwide Hospice Palliative Care Alliance.

PubMed

Connor, Stephen R; Gwyther, Elizabeth

2018-02-01

The Worldwide Hospice Palliative Care Alliance (WHPCA) is an international non-governmental organization registered as a charity in England and Wales that was established in 2008 following a series of international gatherings that highlighted the important need for palliative care to be included in global policy and health planning. The vision of the WHPCA is a world with universal access to hospice and palliative care. Its mission is to foster, promote and influence the delivery of affordable, quality palliative care. This article describes the evolution of the WHPCA and what it has been able to accomplish in the eight years since its formation. These accomplishments include effective advocacy with United Nations bodies, acceptance as a non-governmental organization in official relations with the World Health Organization and the UN Economic and Social Council, publication of many position papers on critical aspects of palliative care, publication of the Global Atlas of Palliative Care at the End of Life, development of toolkits for palliative care development, publication of the international edition of ehospice, and management of World Hospice and Palliative Care Day each year. Some of the many challenges to the growth and development of palliative care globally are described along with future plans. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Palliative Care Development in Kyrgyzstan.

PubMed

Mukambetov, Aibek; Sabyrbekova, Taalaigul; Asanalieva, Lola; Sadykov, Ilim; Connor, Stephen R

2018-02-01

Palliative care began in Kyrgyzstan in 2005 as a pilot home-based care program in Osh Cancer Center and was supported by a small group of nurses and one physician from Scotland. In 2010, the Soros Foundation-Kyrgyzstan and the Open Society Foundation's International Palliative Care Initiative began supporting work on palliative care policy, legislation, essential medicine availability, education, advocacy, and implementation. A Ministry of Health working group was established to lead this initiative, and technical assistance was provided by an international palliative care consultant. Work began with a national needs assessment, which identified the existing barriers to the provision of quality palliative care, and recommendations were made to the working group to address these challenges. Today, palliative care is included in many national health care policies and laws, a national palliative care association has been established, undergraduate medical and nursing education include elements of palliative care, oral morphine and fentanyl patches are now available in parts of the country, inpatient services exist in the National Cancer Center in Osh and Bishkek, two tuberculosis hospitals with multidrug resistant/extensively drug resistant, and home care services in Osh and Bishkek. Public information campaigns and advocacy activities continue to increase public awareness about palliative care and press government action. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Survival time of dogs with inflammatory mammary cancer treated with palliative therapy alone or palliative therapy plus chemotherapy.

PubMed

Clemente, M; De Andrés, P J; Peña, L; Pérez-Alenza, M D

2009-07-18

Seven of 30 female dogs diagnosed with inflammatory mammary cancer were given chemotherapy and palliative treatment, and the other 23 received only palliative treatment. The median survival time of the seven dogs given chemotherapy was 57 days, compared with 35 days for the 23 given only palliative treatment.

What is palliative care?

MedlinePlus

Comfort care; End of life - palliative care; Hospice - palliative care ... The goal of palliative care is to help people with serious illnesses feel better. It prevents or treats symptoms and side effects of disease and ...

[Implementation of a palliative care concept in a geriatric acute care hospital].

PubMed

Hagg-Grün, U; Lukas, A; Sommer, B-N; Klaiber, H-R; Nikolaus, T

2010-12-01

To integrate palliative care patients into an acute geriatric ward requires extensive and continuous education and preparation of all participating professionals. It can be a lengthy process to integrate palliative care concepts despite cooperation of the hospital administration. The group of patients to be integrated differs from the patients of regular geriatric wards because of a higher percentage of relatively young oncologic patients and they differ from a regular palliative ward because about 50% are non-oncologic patients, while the average age is much higher than in normal palliative care. It is possible to integrate specialized palliative care into a regular geriatric ward. Patients admitted without palliative intention will benefit the most from ward-integrated palliative care if the treatment aim turns this way. Ward-integrated palliative care can be an integral part of treating geriatric patients in addition to acute geriatric medicine, rehabilitation, and prevention. It can also provide caretakers and patients with the benefits from continuity of treatment and care.

Defining palliative care in cystic fibrosis: A Delphi study.

PubMed

Dellon, E P; Goggin, J; Chen, E; Sabadosa, K; Hempstead, S E; Faro, A; Homa, K

2018-05-01

The goal of palliative care is to improve quality of life for people with serious illness. We aimed to create a cystic fibrosis (CF)-specific definition of palliative care. A working group of 36 CF care providers, researchers, palliative care providers, quality improvement experts, individuals with CF, and CF caregivers completed a series of questionnaires to rate the value of each of 22 attributes of palliative care, rank top attributes to construct definitions of palliative care, and then rate proposed definitions. An average of 28 participants completed each of four questionnaires, with consistent distribution of stakeholder roles across questionnaires. Many identified overlaps in routine CF care and palliative care and highlighted the importance of a definition that feels relevant across the lifespan. Modified Delphi methodology was used to define palliative care in CF. The definition will be used as the foundation for development of CF-specific palliative care guidelines. Copyright © 2017 European Cystic Fibrosis Society. Published by Elsevier B.V. All rights reserved.

Improving the Quality of Palliative Care Through National and Regional Collaboration Efforts.

PubMed

Kamal, Arif H; Harrison, Krista L; Bakitas, Marie; Dionne-Odom, J Nicholas; Zubkoff, Lisa; Akyar, Imatullah; Pantilat, Steven Z; O'Riordan, David L; Bragg, Ashley R; Bischoff, Kara E; Bull, Janet

2015-10-01

The measurement and reporting of the quality of care in the field of palliation has become a required task for many health care leaders and specialists in palliative care. Such efforts are aided when organizations collaborate together to share lessons learned. The authors reviewed examples of quality-improvement collaborations in palliative care to understand the similarities, differences, and future directions of quality measurement and improvement strategies in the discipline. Three examples were identified that showed areas of robust and growing quality-improvement collaboration in the field of palliative care: the Global Palliative Care Quality Alliance, Palliative Care Quality Network, and Project Educate, Nurture, Advise, Before Life Ends. These efforts exemplify how shared-improvement activities can inform improved practice for organizations participating in collaboration. National and regional collaboratives can be used to enhance the quality of palliative care and are important efforts to standardize and improve the delivery of palliative care for persons with serious illness, along with their friends, family, and caregivers.

A palliative approach for heart failure end-of-life care

PubMed Central

Maciver, Jane; Ross, Heather J.

2018-01-01

Purpose of review The current review discusses the integration of guideline and evidence-based palliative care into heart failure end-of-life (EOL) care. Recent findings North American and European heart failure societies recommend the integration of palliative care into heart failure programs. Advance care planning, shared decision-making, routine measurement of symptoms and quality of life and specialist palliative care at heart failure EOL are identified as key components to an effective heart failure palliative care program. There is limited evidence to support the effectiveness of the individual elements. However, results from the palliative care in heart failure trial suggest an integrated heart failure palliative care program can significantly improve quality of life for heart failure patients at EOL. Summary Integration of a palliative approach to heart failure EOL care helps to ensure patients receive the care that is congruent with their values, wishes and preferences. Specialist palliative care referrals are limited to those who are truly at heart failure EOL. PMID:29135524

[Integration and utilization of physiotherapy in hospice and palliative care : A survey on clinical practice in Germany].

PubMed

Woitha, K; Schneider, N; Wünsch, A; Wiese, B; Fimm, S; Müller-Mundt, G

2017-02-01

Palliative care is an approach that improves the quality of life of patients with incurable and progressive illnesses; therefore, in these situations physiotherapy can play an important role. This study was carried out to examine the integration and utilization of physiotherapy in palliative and hospice care services in Germany. A cross-sectional survey including all palliative care units, specialized outpatient palliative care teams and hospices in Germany (n = 680) in 2013 was carried out. The response rate was 43.5 % (n = 296). Physiotherapy is predominantly applied in palliative care units (79 %) but rarely in hospices (38 %) and outpatient palliative care teams (30 %). A structured physiotherapeutic assessment is rarely carried out even on palliative care units (26 %). Positive effects of physiotherapy are especially described for symptoms, such as edema, pain, constipation and dyspnea. Despite its significant potential to relieve symptoms, physiotherapy is not systematically integrated into palliative care practice in Germany.

Palliative Care

MedlinePlus

... can be provided along with curative treatment. Improves Quality of Life Palliative care teams specialize in treating people suffering ... In short, palliative care will help improve your quality of life. Close Communication The palliative care team will also ...

Palliative Cancer Care in Brazil: The Perspective of Nurses and Physicians.

PubMed

da Silva, Marcelle M; Büscher, Andreas; Moreira, Marléa Chagas

Palliative care is a recent development in health worldwide. In Brazil, a growing number of people with cancer require palliative care, emphasizing the need for investment in this aspect of health to increase the quality of life of patients during the dying process. As a developing country, Brazil lacks knowledge regarding the themes, material and financial resources, and policies of palliative care. The aim of this study was to provide insights into the Brazilian palliative care system from the perspectives of nurses and physicians. This was a descriptive and qualitative study, conducted at the palliative care unit of the Instituto Nacional de Câncer in Brazil. Twelve professionals, among them 8 nurses and 4 physicians, were interviewed in November 2013. The data were analyzed using the thematic analysis method. Ethical aspects were respected. The perspectives of the participants were characterized by 3 themes regarding the initial phase of development of palliative cancer care in Brazil: (1) controversies about when palliative cancer care should be initiated, (2) the World Health Organization recommendations and current practices, and (3) the need to invest in palliative cancer care education in Brazil. The development of palliative care is in the initial stages, and there is a possibility for growth due to recent advances. Knowledge about these challenges to palliative care could contribute to the development of strategies, such as the establishment of service organizations and networks, as well as educational and political investments for the advancement of palliative care.

A Survey of Hospice and Palliative Care Physicians Regarding Palliative Sedation Practices.

PubMed

Lux, Michael R; Protus, Bridget McCrate; Kimbrel, Jason; Grauer, Phyllis

2017-04-01

Patients nearing the end of life may experience symptoms that are refractory to standard therapeutic options. Physicians may consider palliative sedation to relieve intolerable suffering. There is limited clinical literature regarding preferred medications for palliative sedation. To determine the preferred medications physicians use when implementing palliative sedation. An Internet-based, cross-sectional survey of hospice and palliative care physicians in the United States. A link to the survey was e-mailed to 3130 physician members of the American Academy of Hospice and Palliative Medicine, of which 381 physicians completed the survey. Physicians were not required to answer all questions. Nearly all (n = 335, 99%) respondents indicated that palliative sedation may be used (acceptable by 73% [n = 248] for refractory symptoms and acceptable by 26% [n = 87] only for imminently dying patients). Seventy-nine percent (n = 252) believed that opioids should not be used to induce palliative sedation but should be continued to provide pain control. Midazolam was the most commonly selected first-line choice for palliative sedation (n = 155, 42%). The most commonly reported second-line agents for the induction of palliative sedation were lorazepam, midazolam (for those who did not select midazolam as first-line agent), and phenobarbital with a reported preference of 20% (n = 49), 19% (n = 46), and 17% (n = 40), respectively. Of the physicians surveyed, 99% (n = 335) felt that palliative sedation is a reasonable treatment modality. Midazolam was considered a drug of choice for inducing and maintaining sedation, and opioids were continued for pain control.

[Austrian guideline for palliative sedation therapy (long version) : Results of a Delphi process of the Austrian Palliative Society (OPG)].

PubMed

Weixler, Dietmar; Roider-Schur, Sophie; Likar, Rudolf; Bozzaro, Claudia; Daniczek, Thomas; Feichtner, Angelika; Gabl, Christoph; Hammerl-Ferrari, Bernhard; Kletecka-Pulker, Maria; Körtner, Ulrich H J; Kössler, Hilde; Meran, Johannes G; Miksovsky, Aurelia; Pusswald, Bettina; Wienerroither, Thomas; Watzke, Herbert

2017-02-01

Palliative sedation therapy (PST) is an important and ethically accepted therapy in the care of selected palliative care patients with otherwise unbearable suffering from refractory distress. PST is increasingly used in end-of-life care. Austria does not have a standardized ethical guideline for this exceptional practice near end of life, but there is evidence that practice varies throughout the country. The Austrian Palliative Society (OPG) nominated a multidisciplinary working group of 16 palliative care experts and ethicists who established the national guideline on the basis of recent review work with the aim to adhere to the Europeans Association of Palliative Care's (EAPC) framework on palliative sedation therapy respecting Austrians legal, structural and cultural background. Consensus was achieved by a four-step sequential Delphi process. The Delphi-process was strictly orientated to the recently published EUROIMPACT-sedation-study-checklist and to the AGREE-2-tool. Additionally national stakeholders participated in the reflection of the results. As a result of a rigorous consensus process the long version of the Austrian National Palliative Sedation Guideline contains 112 statements within eleven domains and is supplemented by a philosophers excursus on suffering. By establishing a national guideline for palliative sedation therapy using the Delphi technique for consensus and stakeholder involvement the Austrian Palliative Society aims to ensure nationwide good practice of palliative sedation therapy. Screening for the practicability and efficacy of this guideline will be a future task.

Validation of quality indicators for the organization of palliative care: a modified RAND Delphi study in seven European countries (the Europall project).

PubMed

Woitha, Kathrin; Van Beek, Karen; Ahmed, Nisar; Jaspers, Birgit; Mollard, Jean M; Ahmedzai, Sam H; Hasselaar, Jeroen; Menten, Johan; Vissers, Kris; Engels, Yvonne

2014-02-01

Validated quality indicators can help health-care professionals to evaluate their medical practices in a comparative manner to deliver optimal clinical care. No international set of quality indicators to measure the organizational aspects of palliative care settings exists. To develop and validate a set of structure and process indicators for palliative care settings in Europe. A two-round modified RAND Delphi process was conducted to rate clarity and usefulness of a previously developed set of 110 quality indicators. In total, 20 multi-professional palliative care teams of centers of excellence from seven European countries. In total, 56 quality indicators were rated as useful. These valid quality indicators concerned the following domains: the definition of a palliative care service (2 quality indicators), accessibility to palliative care (16 quality indicators), specific infrastructure to deliver palliative care (8 quality indicators), symptom assessment tools (1 quality indicator), specific personnel in palliative care services (9 quality indicators), documentation methodology of clinical data (14 quality indicators), evaluation of quality and safety procedures (1 quality indicator), reporting of clinical activities (1 quality indicator), and education in palliative care (4 quality indicator). The modified RAND Delphi process resulted in 56 international face-validated quality indicators to measure and compare organizational aspects of palliative care. These quality indicators, aimed to assess and improve the organization of palliative care, will be pilot tested in palliative care settings all over Europe and be used in the EU FP7 funded IMPACT project.

Enhancing the prospects for palliative care at the end of life: A statewide educational demonstration project to improve advance care planning.

PubMed

Litzelman, Debra K; Cottingham, Ann H; Griffin, Wilma; Inui, Thomas S; Ivy, Steven S

2016-12-01

Although patients want to participate in discussions and decisions about their end-of-life care, studies show that providers frequently fail to invite them to explore advanced care preferences or goals for living. The purpose of our demonstration project was to provide education and coaching to individuals, health providers, and organizations across the state of Indiana intended to facilitate these conversations, documenting and honoring individuals' life goals and preferences for care during the final stages of life. Education and training engaged community members as well as healthcare providers to: (1) improve participant comfort and facility discussing end-of-life issues; (2) improve knowledge of healthcare choices, including palliative and hospice care; and (3) prepare all participants to explore and document personal values, life goals, and priorities as well as goals of care. Between January of 2013 and June of 2015, the team educated close to 5,000 participants. Participants' ratings of the quality and perceived usefulness of the educational events ranged from 4 to 5 (using a 5-point scale, with 5 = most effective). Participant comments were overwhelmingly favorable and indicated an intention to put the advance care planning resources, communication skills, knowledge of palliative and hospice care, and personal renewal techniques into practice. Participant motivation to foster advance care planning, discussions of palliative care, and end-of-life conversations was facilitated by the reframing of these conversations as identifying goals of care and priorities for living well during an important stage of life. Successful strategies included helping providers and patients to adopt a broader meaning for "sustaining hope" (not for cure, but for engaging in highly valued activities), developing provider communication skills and comfort in initiating potentially difficult discussions, engaging a new community health workforce who will develop trusting relationships with patients in home-based services, and fostering self-awareness and self-care among palliative care providers.

French Swiss physicians' attitude toward palliative sedation: Influence of prognosis and type of suffering.

PubMed

Beauverd, M; Bernard, M; Currat, T; Ducret, S; Foley, R A; Borasio, G D; Blondeau, D; Dumont, S

2014-10-01

Palliative sedation is a last resort medical act aimed at relieving intolerable suffering induced by intractable symptoms in patients at the end-of-life. This act is generally accepted as being medically indicated under certain circumstances. A controversy remains in the literature as to its ethical validity. There is a certain vagueness in the literature regarding the legitimacy of palliative sedation in cases of non-physical refractory symptoms, especially "existential suffering." This pilot study aims to measure the influence of two independent variables (short/long prognosis and physical/existential suffering) on the physicians' attitudes toward palliative sedation (dependent variable). We used a 2 × 2 experimental design as described by Blondeau et al. Four clinical vignettes were developed (vignette 1: short prognosis/existential suffering; vignette 2: long prognosis/existential suffering; vignette 3: short prognosis/physical suffering; vignette 4: long prognosis/physical suffering). Each vignette presented a terminally ill patient with a summary description of his physical and psychological condition, medication, and family situation. The respondents' attitude towards sedation was assessed with a six-point Likert scale. A total of 240 vignettes were sent to selected Swiss physicians. 74 vignettes were completed (36%). The means scores for attitudes were 2.62 ± 2.06 (v1), 1.88 ± 1.54 (v2), 4.54 ± 1.67 (v3), and 4.75 ± 1.71 (v4). General linear model analyses indicated that only the type of suffering had a significant impact on the attitude towards sedation (F = 33.92, df = 1, p = 0.000). Significance of the results: The French Swiss physicians' attitude toward palliative sedation is more favorable in case of physical suffering than in existential suffering. These results are in line with those found in the study of Blondeau et al. with Canadian physicians and will be discussed in light of the arguments given by physicians to explain their decisions.

A Pilot Randomized Controlled Trial of a Holistic Needs Assessment Questionnaire in a Supportive and Palliative Care Service.

PubMed

Ahmed, Nisar; Hughes, Philippa; Winslow, Michelle; Bath, Peter A; Collins, Karen; Noble, Bill

2015-11-01

At present, there is no widely used systematic evidence-based holistic approach to assessment of patients' supportive and palliative care needs. To determine whether the use of a holistic needs assessment questionnaire, Sheffield Profile for Assessment and Referral for Care (SPARC), will lead to improved health care outcomes for patients referred to a palliative care service. This was an open, pragmatic, randomized controlled trial. Patients (n = 182) referred to the palliative care service were randomized to receive SPARC at baseline (n = 87) or after a period of two weeks (waiting-list control n = 95). Primary outcome measure is the difference in score between Measure Yourself Concerns and Wellbeing (MYCAW) patient-nominated Concern 1 on the patient self-scoring visual analogue scale at baseline and the two-week follow-up. Secondary outcomes include difference in scores in the MYCAW, EuroQoL (EQ-5D), and Patient Enablement Instrument (PEI) scores at Weeks 2, 4, and 6. There was a significant association between change in MYCAW score and whether the patients were in the intervention or control group (χ(2)trend = 5.51; degrees of freedom = 1; P = 0.019). A higher proportion of patients in the control group had an improvement in MYCAW score from baseline to Week 2: control (34 of 70 [48.6%]) vs. intervention (19 of 66 [28.8%]). There were no significant differences (no detectable effect) between the control and intervention groups in the scores for EQ-5D and Patient Enablement Instrument at 2-, 4-, or 6-week follow-up. This trial result identifies a potential negative effect of SPARC in specialist palliative care services, raising questions that standardized holistic needs assessment questionnaires may be counterproductive if not integrated with a clinical assessment that informs the care plan. Copyright © 2015 The Authors. Published by Elsevier Inc. All rights reserved.

Comfort in palliative sedation (Compas): a transdisciplinary mixed method study protocol for linking objective assessments to subjective experiences.

PubMed

Six, Stefaan; Laureys, Steven; Poelaert, Jan; Bilsen, Johan; Theuns, Peter; Deschepper, Reginald

2018-04-18

In case of untreatable suffering at the end of life, palliative sedation may be chosen to assure comfort by reducing the patient's level of consciousness. An important question here is whether such sedated patients are completely free of pain. Because these patients cannot communicate anymore, caregivers have to rely on observation to assess the patient's comfort. Recently however, more sophisticated techniques from the neurosciences have shown that sometimes consciousness and pain are undetectable with these traditional behavioral methods. The aim of this study is to better understand how unconscious palliative sedated patients experience the last days of their life and to find out if they are really free of pain. In this study we will observe 40 patients starting with initiation of palliative sedation until death. Assessment of comfort based on behavioral observations will be related with the results from a NeuroSense monitor, an EEG-based monitor used for evaluation of the adequacy of anesthesia and sedation in the operating room and an ECG-based Analgesia Nociception Index (ANI) monitor, which informs about comfort or discomfort condition, based on the parasympathetic tone. An innovative and challenging aspect of this study is its qualitative approach; "objective" and "subjective" data will be linked to achieve a holistic understanding of the study topic. The following data will be collected: assessment of pain/comfort by the patients themselves (if possible) by scoring a Visual Analogue Scale (VAS); brain function monitoring; monitoring of parasympathetic tone; caregivers' assessment (pain, awareness, communication); relatives' perception of the quality of the dying process; assessment by 2 trained investigators using observational scales; video and audio registration. Measuring pain and awareness in non-communicative dying patients is both technically and ethically challenging. ANI and EEG have shown to be promising technologies to detect pain that otherwise cannot be detected with the "traditional" methods. Although these technologies have the potential to provide objective quantifiable indicators for distress and awareness in non-communicative patients, strikingly they have not yet been used to check whether the current assessments for non-communicative patients are reliable. The study is registered on ClinicalTrials.gov (Identifier: NCT03273244 ; registration date: 7.9.2017).

Clinical characteristics and course of dying in patients with amyotrophic lateral sclerosis withdrawing from long-term ventilation.

PubMed

Kettemann, Dagmar; Funke, Andreas; Maier, André; Rosseau, Simone; Meyer, Robert; Spittel, Susanne; Münch, Christoph; Meyer, Thomas

2017-02-01

Non-invasive ventilation (NIV) or tracheotomy with invasive ventilation (TIV) are treatment options in ALS. However, a proportion of patients receiving long-term ventilation decide to have it withdrawn. The objective of this study was to analyse the clinical characteristics and palliative approaches in ALS patients withdrawing from long-term ventilation (WLTV). In a cohort study, two different palliative concepts in WLTV were studied: (1) augmented symptom control (ASC; sedation not intended) in patients with ventilator-free tolerance; (2) continuous deep sedation (CDS; sedation intended) in patients without ventilator-free tolerance. Results showed that WLTV was realised in 49 ALS patients (NIV = 13; TIV = 36). Mean daily ventilation was 23.4 h. The ALS Functional Rating Scale (ALSFRS-R) was low (5.6 of 48). Forty-one per cent of patients (n = 20) presented with ophthalmoplegia. ASC was performed in 20 patients, CDS in 29 patients. The mean time to death following disconnection was 32 (0.3-164) h during ASC and 0.3 (0.2-0.6) h in CDS. In conclusion, a low ALSFRS-R, high incidence of ophthalmoplegia and extended ventilator dependency were found before WLTV. The presence or absence of ventilator-free tolerance determined the approach to the management of symptoms, the setting for immediate end-of-life care and the course of dying in WLTV.

The Medical Necessity for Medicinal Cannabis: Prospective, Observational Study Evaluating the Treatment in Cancer Patients on Supportive or Palliative Care

PubMed Central

Bar-Sela, Gil; Vorobeichik, Marina; Drawsheh, Saher; Omer, Anat; Goldberg, Victoria; Muller, Ella

2013-01-01

Background. Cancer patients using cannabis report better influence from the plant extract than from synthetic products. However, almost all the research conducted to date has been performed with synthetic products. We followed patients with a medicinal cannabis license to evaluate the advantages and side effects of using cannabis by cancer patients. Methods. The study included two interviews based on questionnaires regarding symptoms and side effects, the first held on the day the license was issued and the second 6–8 weeks later. Cancer symptoms and cannabis side effects were documented on scales from 0 to 4 following the CTCAE. The distress thermometer was used also. Results. Of the 211 patients who had a first interview, only 131 had the second interview, 25 of whom stopped treatment after less than a week. All cancer or anticancer treatment-related symptoms showed significant improvement (P < 0.001). No significant side effects except for memory lessening in patients with prolonged cannabis use (P = 0.002) were noted. Conclusion. The positive effects of cannabis on various cancer-related symptoms are tempered by reliance on self-reporting for many of the variables. Although studies with a control group are missing, the improvement in symptoms should push the use of cannabis in palliative treatment of oncology patients. PMID:23956774

Negotiating the equivocality of palliative care: a grounded theory of team communicative processes in inpatient medicine.

PubMed

Ledford, Christy J W; Canzona, Mollie Rose; Cafferty, Lauren A; Kalish, Virginia B

2016-01-01

In the majority of U.S. hospitals, inpatient medicine teams make palliative care decisions in the absence of a formalized palliative system. Using a grounded theory approach, interviews with inpatient team members were systematically analyzed to uncover how participants conceptualize palliative care and how they regard the communicative structures that underlie its delivery. During analysis, Weick's model of organizing emerged as a framework that fit the data. The 39 participant inpatient team members discussed palliative care as primarily a communicative process. Themes describing the meaning of palliative care emerged around the concepts of receiver of care, timeline of care, and location of care. The emerging model included four stages in the communicative processes of inpatient palliative care: (a) interpret the need, (b) initiate the conversation, (c) integrate the processes, and (d) identify what works. In contrast to stable, focused palliative care teams or hospice care teams, which have prescribed patient populations and processes, the inpatient medicine team faces the equivocality of providing palliative care within a broader practice. This research offers a four-phase model to show how these inpatient teams communicate within this context. Implications for the provision of palliative care are discussed.

Palliative Care in Moldova.

PubMed

Gherman, Liliana; Pogonet, Vadim; Soltan, Viorel; Isac, Valerian

2018-02-01

The article describes the important steps of palliative care development in Moldova, the current status, main achievements and challenges to be addressed in the future. It covers background information, policy development, medicines access and availability, education, and training, as well as services' provision. Palliative care development in Moldova registered real progress in spite of frequent political changes at governmental levels and difficulties to ensure the continuity of the development process during the last 10 years. However, the unmet need for palliative care for patients with life-limiting illnesses from different disease and age groups remains high. Further effort is needed to increase the availability and access to opioid analgesics and other essential palliative care medications. Government commitment and support, together with adequate funding, trained and educated health care professionals, and easy access to and availability of medicines, are essential to ensure the successful implementation of palliative care services nationwide, and to deliver the most appropriate qualitative palliative care for patients. To speed up palliative care development, a national strategy on palliative care development should be considered. The authors took part and continue to be involved in different ways in palliative care development in the country. Copyright © 2017. Published by Elsevier Inc.

Opinions about the new law on end-of-life issues in a sample of french patients receiving palliative care.

PubMed

Boulanger, Augustin; Chabal, Théo; Fichaux, Marie; Destandau, Mireille; La Piana, Jean Marc; Auquier, Pascal; Baumstarck, Karine; Salas, Sébastien

2017-01-21

In February 2nd 2016, the French government enacted the Claeys-Leonetti law that forbade euthanasia and established the right to deep and continuous sedation for end-of-life patients. Moreover, the law also obliges clinicians to abide by any advance directives regarding treatment and investigation, except in cases where they are "obviously inappropriate" in a given medical situation, or in cases of emergency, in order to allow medical staff to take time to assess the patient's situation. Artificial feeding and hydration are considered as treatment. The aim of this report is to investigate individuals receiving palliative care about their opinion about euthanasia, about advance directives, about the right to deep and continuous sedation, and the right to stopping artificial feeding and hydration. The study was an opinion survey conducted among patients treated in two different palliative care institutions: a palliative care unit at the University Hospital (Timone, Marseille, France) and a non-profit association palliative care home ("La Maison", Gardanne, France). Face-to-face interviews were performed by two investigators. The survey included sociodemographics, clinical data, and opinions about euthanasia, deep and continuous sedation, stopping artificial feeding and hydration, and advance directives. Forty patients were interviewed. The mean age was 59.8 years (standard deviation 12). Fifty three percent reported opposition to legalized euthanasia. Eighty three percent were in favour of the right to deep and continuous sedation in patients with refractory pain, 75% when it concerns a patient unable to express their wishes, and 68% when the patient decides to stop vital treatment. Fifty eight percent reported that artificial nutrition and hydration should be considered as care. Fifty eight percent of the patients interviewed would like to see doctors follow the express wishes contained in advance care directives and 53% that advance directives should be subject to a validity period. This work demonstrates the feasibility of discussing sensitive issues such as euthanasia, continuous and deep sedation and cessation of care with patients receiving palliative care. These preliminary results point to the need to perform a larger study in order to find determinant factors in this specific situation and to incorporate them into thinking about end-of-life laws.

Factors affecting rural volunteering in palliative care - an integrated review.

PubMed

Whittall, Dawn; Lee, Susan; O'Connor, Margaret

2016-12-01

To review factors shaping volunteering in palliative care in Australian rural communities using Australian and International literature. Identify gaps in the palliative care literature and make recommendations for future research. A comprehensive literature search was conducted using Proquest, Scopus, Sage Premier, Wiley online, Ovid, Cochran, Google Scholar, CINAHL and Informit Health Collection. The literature was synthesised and presented in an integrated thematic narrative. Australian Rural communities. While Australia, Canada, the United States (US) and the United Kingdom (UK) are leaders in palliative care volunteer research, limited research specifically focuses on volunteers in rural communities with the least occurring in Australia. Several interrelated factors influence rural palliative care provision, in particular an increasingly ageing population which includes an ageing volunteer and health professional workforce. Also current and models of palliative care practice fail to recognise the innumerable variables between and within rural communities such as distance, isolation, lack of privacy, limited health care services and infrastructure, and workforce shortages. These issues impact palliative care provision and are significant for health professionals, volunteers, patients and caregivers. The three key themes of this integrated review include: (i) Geography, ageing rural populations in palliative care practice, (ii) Psychosocial impact of end-end-of life care in rural communities and (iii) Palliative care models of practice and volunteering in rural communities. The invisibility of volunteers in rural palliative care research is a concern in understanding the issues affecting the sustainability of quality palliative care provision in rural communities. Recommendations for future Australian research includes examination of the suitability of current models of palliative care practice in addressing the needs of rural communities; the recruitment, training, ongoing education and support of volunteers in rural palliative care provision to ensure equitable care for all communities in Australia regardless of location. © 2016 National Rural Health Alliance Inc.

Interview: Cancer pain management: the last decade and looking forward.

PubMed

Kaasa, Stein

2013-11-01

Stein Kaasa, MD, speaks to Dominic Chamberlain, Assistant Commissioning Editor: Stein Kaasa specializes in oncology and palliative medicine. In 1993 he was appointed as the first professor in palliative medicine in Scandinavia and he was one of the founders of the palliative care unit in Trondheim (Norway). He also was the founder of the European Palliative Care Research Centre. He has been president of the European Association for Palliative Care, coordinator for one EU-funded project and is Work Package Leader of several EU-funded research collaboratives and international partnerships on research and policy development. Kaasa has been an important advocate for evidence-based practice and has worked extensively to get palliative care research on the agenda, both nationally and internationally. Through his role as Cancer Director in Norway he coordinated and led the development of guidelines for different cancer diseases. Important areas of work were the development of regional cancer treatment guidelines and integration of patient disease trajectories into the existing guidelines. Currently he is Vice Managing Director at St Olavs Hospital, Trondheim University Hospital (Norway), Professor of palliative medicine at the Faculty of Medicine, Norwegian University of Science and Technology and leads the European Palliative Care Research Centre and chairs the European Association for Palliative Care Research Network. Professor Kaasa has published more than 450 articles and book chapters. He has authored the Nordic Textbook of Palliative Care and is coauthor and editor of the Oxford Textbook of Palliative Medicine. Professor Kaasa advises many international journals - either as an advisory board member or as a reviewer (Journal of Pain and Symptom Management, Palliative Medicine, Journal of Palliative Medicine, Oncology, Journal of Clinical Oncology, Pain and The Lancet Oncology).

Utilization and determinants of palliative care in the trauma intensive care unit: results of a national survey.

PubMed

Karlekar, Mohana; Collier, Bryan; Parish, Abby; Olson, Lori; Elasy, Tom

2014-09-01

There is a paucity of data evaluating utilization of palliative care in trauma intensive care units. We sought to determine current indications and determinants of palliative care consultation in the trauma intensive care units. Using a cross-sectional assessment, we surveyed trauma surgeons to understand indications, benefits, and barriers trauma surgeons perceive when consulting palliative care. A total of 1232 surveys were emailed to all members of the Eastern Association for the Surgery of Trauma. A total of 362 providers responded (29% response rate). Majority of respondents were male (n = 287, 80.2%) and practiced in Level 1 (n = 278, 77.7%) trauma centers. Most common indicators for referral to palliative care were expected survival 1 week to 1 month, multisystem organ dysfunction >3 weeks, minimal neurologic responsiveness >1 week, and referral to hospice. In post hoc analysis, there was a significant difference in frequency of utilization of palliative care when respondents had access to board-certified palliative care physicians (χ(2) = 56.4, p < 0.001). Although half of the respondents (n = 199, 55.6%) reported palliative care consults beneficial all or most of the time, nearly still half (n = 174, 48.6%) felt palliative care was underutilized. Most frequent barriers to consultation included resistance from families (n = 144, 40.2%), concerns that physicians were "giving up" (n = 109, 30.4%), and miscommunication of prognosis (n = 98, 27.4%) or diagnosis (n = 58, 16.2%) by the palliative care physician. Although a plurality of trauma surgeons reported palliative care beneficial, those surveyed indicate that palliative care is underutilized. Barriers identified provide important opportunities to further appropriate utilization of palliative care services. © The Author(s) 2014.

Euthanasia and physician-assisted suicide: A white paper from the European Association for Palliative Care.

PubMed

Radbruch, Lukas; Leget, Carlo; Bahr, Patrick; Müller-Busch, Christof; Ellershaw, John; de Conno, Franco; Vanden Berghe, Paul

2016-02-01

In recognition of the ongoing discussion on euthanasia and physician-assisted suicide, the Board of Directors of the European Association for Palliative Care commissioned this white paper from the palliative care perspective. This white paper aims to provide an ethical framework for palliative care professionals on euthanasia and physician-assisted suicide. It also aims to provide an overview on the available evidence as well as a discourse of ethical principles related to these issues. Starting from a 2003 European Association for Palliative Care position paper, 21 statements were drafted and submitted to a five-round Delphi process A panel with 17 experts commented on the paper in round 1. Board members of national palliative care or hospice associations that are collective members of European Association for Palliative Care were invited to an online survey in rounds 2 and 3. The expert panel and the European Association for Palliative Care board members participated in rounds 4 and 5. This final version was adopted as an official position paper of the European Association for Palliative Care in April 2015. Main topics of the white paper are concepts and definitions of palliative care, its values and philosophy, euthanasia and physician-assisted suicide, key issues on the patient and the organizational level. The consensus process confirmed the 2003 European Association for Palliative Care white paper and its position on the relationship between palliative care and euthanasia and physician-assisted suicide. The European Association for Palliative Care feels that it is important to contribute to informed public debates on these issues. Complete consensus seems to be unachievable due to incompatible normative frameworks that clash. © The Author(s) 2015.

"It Is Like Heart Failure. It Is Chronic … and It Will Kill You": A Qualitative Analysis of Burnout Among Hospice and Palliative Care Clinicians.

PubMed

Kavalieratos, Dio; Siconolfi, Daniel E; Steinhauser, Karen E; Bull, Janet; Arnold, Robert M; Swetz, Keith M; Kamal, Arif H

2017-05-01

Although prior surveys have identified rates of self-reported burnout among palliative care clinicians as high as 62%, limited data exist to elucidate the causes, ameliorators, and effects of this phenomenon. We explored burnout among palliative care clinicians, specifically their experiences with burnout, their perceived sources of burnout, and potential individual, interpersonal, organizational, and policy-level solutions to address burnout. During the 2014 American Academy of Hospice and Palliative Medicine/Hospice and Palliative Nurses Association Annual Assembly, we conducted three focus groups to examine personal narratives of burnout, how burnout differs within hospice and palliative care, and strategies to mitigate burnout. Two investigators independently analyzed data using template analysis, an inductive/deductive qualitative analytic technique. We interviewed 20 palliative care clinicians (14 physicians, four advanced practice providers, and two social workers). Common sources of burnout included increasing workload, tensions between nonspecialists and palliative care specialists, and regulatory issues. We heard grave concerns about the stability of the palliative care workforce and concerns about providing high-quality palliative care in light of a distressed and overburdened discipline. Participants proposed antiburnout solutions, including promoting the provision of generalist palliative care, frequent rotations on-and-off service, and organizational support for self-care. We observed variability in sources of burnout between clinician type and by practice setting, such as role monotony among full-time clinicians. Our results reinforce and expand on the severity and potential ramifications of burnout on the palliative care workforce. Future research is needed to confirm our findings and investigate interventions to address or prevent burnout. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

The palliative care knowledge questionnaire for PEACE: reliability and validity of an instrument to measure palliative care knowledge among physicians.

PubMed

Yamamoto, Ryo; Kizawa, Yoshiyuki; Nakazawa, Yoko; Morita, Tatsuya

2013-11-01

In Japan, a nationwide palliative care education program for primary palliative care (the Palliative care Emphasis program on symptom management and Assessment for Continuous medical Education: PEACE) was established in 2008. Effective delivery of such programs relies on adequate evaluations of program efficacy; however, such an instrument does not exist. This study aimed to develop and validate a measurement tool to quantify knowledge level of physicians about broader areas of palliative care, by which the effect of an education program could be measured. We conducted a cross-sectional, anonymous, self-administered questionnaire survey with a group of 801 conveniently sampled physicians in October 2010. To examine the test-retest reliability of items and domains, the questionnaire was reissued two weeks after the first survey was completed. This study used psychometric methods, including item response theory, intraclass correlation coefficients, and known-group validity. The response rate was 54% (n=434). We included 33 items across the following 9 domains: (1) philosophy of palliative care, (2) cancer pain, (3) side effects of opioids, (4) dyspnea, (5) nausea and vomiting, (6) psychological distress, (7) delirium, (8) communication regarding palliative care, and (9) community-based palliative care. For these items, the intraclass correlation was 0.84 and the Kuder-Richardson Formula 20 (KR-20) test of internal consistency was 0.87. There was a significant difference in the scores between palliative care specialists and other physicians. We successfully validated a newly developed palliative care knowledge questionnaire to evaluate PEACE effectiveness (PEACE-Q). The PEACE-Q could be useful for evaluating both palliative care knowledge among physicians and education programs in primary palliative care.

What is Pediatric Palliative Care?

MedlinePlus

... FAQ Handout for Patients and Families What Is Pediatric Palliative Care? Pediatric Palliative care (pronounced pal-lee-uh-tiv) is ... life for both the child and the family. Pediatric palliative care is provided by a team of ...

DOE Office of Scientific and Technical Information (OSTI.GOV)

Aliberti, Camillo, E-mail: camy.ali@libero.i; Benea, Giorgio, E-mail: g.benea@ausl.fe.it; Tilli, Massimo, E-mail: mtilli72@libero.i

The purpose of this study was to evaluate the safety and efficacy of TACE with microspheres preloaded with doxorubicin in unresectable intrahepatic cholangiocarcinoma (UCH). Twenty patients with UCH were observed; 9 refused, preferring other palliative care or chemotherapy, and 11 agreed to be treated with one or more cycles of DC beads loaded with doxorubicin (100-150 mg) in a TACE procedure between February 2006 and September 2007. A total of 29 individual TACE procedures were performed. Follow-up imaging was performed on all patients before, immediately after, and 4 weeks after each TACE procedure to evaluate the response and need formore » further treatment. Each patient received i.v hydration, antibiotics, and medications against nausea and pain before TACE. Survival rate was calculated using Kaplan-Meier survival curve. A response rate of 100% followed RECIST criteria was observed. Eight of eleven patients are alive, with a median survival of 13 months. TACE was well tolerated by all patients. One patient developed hepatic abscess requiring antibiotic therapy. No evidence of marrow toxicity has been reported. Only one of nine patients treated with chemotherapy or palliative care is alive (with a median survival of 7 months in this group of patients). In conclusion, we suggest that doxorubicin-eluting beads TACE is a feasible and effective treatment in patients with UCH. Survival seems to be clearly prolonged in the treated group with respect to the palliative group. We consider that doxorubicin-eluting beads TACE of 100-150 mg may be an appropriate palliative therapy for these patients. Further studies are warranted to confirm these interesting preliminary data.« less

Catheter interventions in the staged management of hypoplastic left heart syndrome.

PubMed

Reinhardt, Zdenka; De Giovanni, Joseph; Stickley, John; Bhole, Vinay K; Anderson, Benjamin; Murtuza, Bari; Mehta, Chetan; Miller, Paul; Dhillon, Rami; Stumper, Oliver

2014-04-01

To analyse the current practice and contribution of catheter interventions in the staged management of patients with hypoplastic left heart syndrome. This study is a retrospective case note review of 527 patients undergoing staged Norwood/Fontan palliation at a single centre between 1993 and 2010. Indications and type of catheter interventions were reviewed over a median follow-up period of 7.5 years. A staged Norwood/Fontan palliation for hypoplastic left heart syndrome was performed in 527 patients. The 30-day survival rate after individual stages was 76.5% at Stage I, 96.3% at Stage II, and 99.4% at Stage III. A total of 348 interventions were performed in 189 out of 527 patients. Freedom from catheter intervention in survivors was 58.2% before Stage II and 46.7% before Stage III. Kaplan-Meier freedom from intervention post Fontan completion was 55% at 10.8 years of follow-up. Post-stage I interventions were mostly directed to relieve aortic arch obstruction--84 balloon angioplasties--and augment pulmonary blood flow--15 right ventricle-to-pulmonary conduit interventions; post-Stage II interventions centred on augmenting size of the left pulmonary artery--73 procedures and abolishing systemic venous collaterals--32 procedures. After Stage III, the focus was on manipulating the size of the fenestration--42 interventions--and the left pulmonary artery -31 procedures. Interventional cardiac catheterisation constitutes an integral part in the staged palliative management of patients with hypoplastic left heart syndrome. Over one-third (37%) of patients undergoing staged palliation required catheter intervention over the follow-up period.

Going back to home to die: does it make a difference to patient survival?

PubMed

Murakami, Nozomu; Tanabe, Kouichi; Morita, Tatsuya; Kadoya, Shinichi; Shimada, Masanari; Ishiguro, Kaname; Endo, Naoki; Sawada, Koichiro; Fujikawa, Yasunaga; Takashima, Rumi; Amemiya, Yoko; Iida, Hiroyuki; Koseki, Shiro; Yasuda, Hatsuna; Kashii, Tatsuhiko

2015-01-01

Many patients wish to stay at home during the terminal stage of cancer. However, there is concern that medical care provided at home may negatively affect survival. This study therefore explored whether the survival duration differed between cancer patients who received inpatient care and those who received home care. We retrospectively investigated the place of care/death and survival duration of 190 cancer patients after their referral to a palliative care consultation team in a Japanese general hospital between 2007 and 2012. The patients were classified into a hospital care group consisting of those who received palliative care in the hospital until death, and a home care group including patients who received palliative care at home from doctors in collaboration with the palliative care consultation team. Details of the place of care, survival duration, and patient characteristics (primary site, gender, age, history of chemotherapy, and performance status) were obtained from electronic medical records, and analyzed after propensity score matching in the place of care. Median survival adjusted for propensity score was significantly longer in the home care group (67.0 days, n = 69) than in the hospital care group (33.0 days, n = 69; P = 0.0013). Cox's proportional hazard analysis revealed that the place of care was a significant factor for survival following adjustment for covariates including performance status. This study suggests that the general concern that home care shortens the survival duration of patients is not based on evidence. A cohort study including more known prognostic factors is necessary to confirm the results.

Efficacy of Magnetic Resonance-guided Focused Ultrasound Surgery for Bone Metastases Pain Palliation

NASA Astrophysics Data System (ADS)

Kawasaki, Motohiro; Nanba, Hirofumi; Kato, Tomonari; Tani, Toshikazu; Ushida, Takahiro

2011-09-01

Magnetic resonance-guided focused ultrasound surgery (MRgFUS) is a novel treatment method that achieves non-invasive thermal ablation by focusing many ultrasound waves on a target tissue with real-time monitoring of the location and temperature of the target during the procedure. We investigated the palliative effect on pain and safety of MRgFUS in painful bone metastases. Six patients (mean age, 65.8 years) who met eligibility criteria for the clinical study approved by our Institutional Ethics Committee based on the cooperative protocol were treated with MRgFUS. Targeted sites included the sacrum (n = 1), ilium (n = 2), scapula (n = 2), and femur (n = 1). The mean follow-up period was 9.2 months. All procedures were performed as a single-session treatment using the treatment system that is integrated into the patient table of a magnetic resonance image (MRI) scanner. Endpoints were change in the intensity of pain due to bone metastases from before to after the treatment, as measured on a numerical rating scale, pain interference with daily activities as determined by the Brief pain inventory (BPI), change in images, and safety. Pain relief was obtained in all patients early after treatment, with a reduction in the mean pain score from 6.0±1.3 at baseline to 1.2±1.0 at the end of follow-up as well as in pain interference with daily activities. The mean time required for a single-session treatment was 83.7±37.0 min, with a mean number of sonications required of 13.3±3.7 and mean energy applied of 846.4±273.5 J. No significant growth of tumors was observed, nor were there treatment-related adverse events. These results suggest that MRgFUS has a non-invasive palliative effect on the localized pain in patients with bone metastasis. MRgFUS could become an option in treatment strategies for painful bone metastases in the future.

Increasing Access to Palliative Care Services in the Intensive Care Unit.

PubMed

McCarroll, Caitlin Marie

The Institute of Medicine's report, Dying in America, highlights the critical need for the widespread implementation of palliative care to improve end-of-life care. Approximately 20% of all deaths in America occur during or shortly after an intensive care unit (ICU) admission; therefore, it is important for critical care units to have systems in place to facilitate patient access to palliative care services. The aim of this quality improvement (QI) project was to develop and implement a palliative care screening tool using evidence-based triggers to help increase the proportion of palliative care consultations in the ICU setting. A QI project was designed and implemented in a 14-bed medical-surgical ICU in the southeastern United States using the Plan-Do-Study-Act cycle. A palliative care screening tool was developed by an interdisciplinary team of key stakeholders in the ICU using evidence-based triggers, and staff were educated on the intervention. The proportion of ICU patients who received a palliative care consultation was compared preintervention and postintervention to determine whether the QI project contributed to an increased proportion of palliative care consultations. The proportion of palliative care consultations among patients admitted to the ICU by the pulmonary critical care team increased from 1 of 10 preintervention to 3 of 10 postintervention, resulting in a promising increase in patients receiving palliative care services consistent with evidence-based recommendations. The use of an evidence-based screening tool to trigger palliative care consultation in the ICU setting can aid in increasing the proportion of critical care patients who receive a palliative care referral. The increase in the proportion of palliative care referrals by the pulmonary critical care service warrants expansion of the intervention to include additional medical subspecialists who frequently admit patients in this ICU setting. Further assessment of the intervention is warranted to determine whether the screening tool can aid in increasing palliative care consultations for more patients admitted to the hospital's ICU.

Branding Palliative Care Units by Avoiding the Terms “Palliative” and “Hospice”

PubMed Central

Dai, Ying-Xiu; Chen, Tzeng-Ji; Lin, Ming-Hwai

2017-01-01

The term “palliative care” has a negative connotation and may act as a barrier to early patient referrals. Rebranding has thus been proposed as a strategy to reduce the negative perceptions associated with palliative care. For example, using the term “supportive care” instead of “palliative care” in naming palliative care units has been proposed in several studies. In Taiwan, terms other than “palliative” and “hospice” are already widely used in the names of palliative care units. With this in mind, this study investigated the characteristics of palliative care unit names in order to better understand the role of naming in palliative care. Relevant data were collected from the Taiwan Academy of Hospice Palliative Medicine, the National Health Insurance Administration of the Ministry of Health and Welfare, and the open database maintained by the government of Taiwan. We found a clear phenomenon of avoiding use of the terms “palliative” and “hospice” in the naming of palliative care units, a phenomenon that reflects the stigma attached to the terms “palliative” and “hospice” in Taiwan. At the time of the study (September, 2016), there were 55 palliative care units in Taiwan. Only 20.0% (n = 11) of the palliative care unit names included the term “palliative,” while 25.2% (n = 14) included the term “hospice.” Religiously affiliated hospitals were less likely to use the terms “palliative” and “hospice” (χ2 = 11.461, P = .001). There was also a lower prevalence of use of the terms “palliative” and “hospice” for naming palliative care units in private hospitals than in public hospitals (χ2 = 4.61, P = .032). This finding highlights the strong stigma attached to the terms “palliative” and “hospice” in Taiwan. It is hypothesized that sociocultural and religious factors may partially account for this phenomenon. PMID:28140730

Health care professionals' attitudes regarding palliative care for patients with chronic heart failure: an interview study.

PubMed

Ziehm, Jeanette; Farin, Erik; Seibel, Katharina; Becker, Gerhild; Köberich, Stefan

2016-08-15

Even though struggling with similar symptom burden, patients with chronic heart failure (CHF) receive less palliative care than patients suffering from malignant diseases. Researchers have found that this might be related to lack of knowledge about palliative care, insufficient interprofessional communication as well as the cyclic course of disease which makes accurate prognosis difficult. However, research findings have shown that patients with CHF benefit from palliative care. As there are no studies for the German health care system this study aimed to assess health care professionals' attitudes regarding palliative care of CHF patients in order to identify barriers and facilitators for this patient group and hence to develop recommendations for improvement of CHF patients' access to palliative care in Germany. Problem-centered interviews with 23 health care professionals involved in care of CHF patients (nurses: hospital, outpatient, heart failure, PC; physicians: hospital and resident cardiologists, general practitioners) were conducted and analysed according to Mayring's qualitative content analysis. Most interviewees perceived a need for palliative care for CHF patients. Regarding barriers patients', public's, and professionals' lack of knowledge of palliative care and CHF; shortcomings in communication and cooperation of different professional groups; inability of cardiology to accept medical limits; difficult prognosis of course of disease; and patients' concerns regarding palliative care were described. Different attitudes regarding appropriate time of initiation of palliative care for CHF patients (late vs. early) were found. Furthermore, better communication and closer cooperation between different professional groups and medical disciplines as well as better education about palliative care and CHF for professionals, patients, and public were cited. Palliative care for CHF patients is a neglected topic in both practice and research and should receive more attention. Barriers to palliative care for CHF patients might be overcome by: better education for the public, patients, and professionals, closer cooperation between the different professional groups involved as well as development of a joint agreement regarding the appropriate time to administer palliative care to CHF patients. DRKS00007119 .

Palliative Care Professional Development for Critical Care Nurses: A Multicenter Program.

PubMed

Anderson, Wendy G; Puntillo, Kathleen; Cimino, Jenica; Noort, Janice; Pearson, Diana; Boyle, Deborah; Grywalski, Michelle; Meyer, Jeannette; O'Neil-Page, Edith; Cain, Julia; Herman, Heather; Barbour, Susan; Turner, Kathleen; Moore, Eric; Liao, Solomon; Ferrell, Bruce; Mitchell, William; Edmonds, Kyle; Fairman, Nathan; Joseph, Denah; MacMillan, John; Milic, Michelle M; Miller, Monica; Nakagawa, Laura; O'Riordan, David L; Pietras, Christopher; Thornberry, Kathryn; Pantilat, Steven Z

2017-09-01

Integrating palliative care into intensive care units (ICUs) requires involvement of bedside nurses, who report inadequate education in palliative care. To implement and evaluate a palliative care professional development program for ICU bedside nurses. From May 2013 to January 2015, palliative care advanced practice nurses and nurse educators in 5 academic medical centers completed a 3-day train-the-trainer program followed by 2 years of mentoring to implement the initiative. The program consisted of 8-hour communication workshops for bedside nurses and structured rounds in ICUs, where nurse leaders coached bedside nurses in identifying and addressing palliative care needs. Primary outcomes were nurses' ratings of their palliative care communication skills in surveys, and nurses' identification of palliative care needs during coaching rounds. Each center held at least 6 workshops, training 428 bedside nurses. Nurses rated their skill level higher after the workshop for 15 tasks (eg, responding to family distress, ensuring families understand information in family meetings, all P < .01 vs preworkshop). Coaching rounds in each ICU took a mean of 3 hours per month. For 82% of 1110 patients discussed in rounds, bedside nurses identified palliative care needs and created plans to address them. Communication skills training workshops increased nurses' ratings of their palliative care communication skills. Coaching rounds supported nurses in identifying and addressing palliative care needs. ©2017 American Association of Critical-Care Nurses.

Resources for Educating, Training, and Mentoring All Physicians Providing Palliative Care.

PubMed

Downar, James

2018-01-01

This article presents a rapid review of the published literature and available resources for educating Canadian physicians to provide palliative and end-of-life care. Several key messages emerge from the review. First, there are many palliative care educational resources already available for Canadian physicians. Second, the many palliative care education resources are often not used in physician training. Third, we know that some palliative care educational interventions are inexpensive and scalable, while others are costly and time-consuming; we know very little about which palliative care educational interventions impact physician behavior and patient care. Fourth, two palliative care competency areas in particular can be readily taught: symptom management and communication skill (e.g., breaking bad news and advance care planning). Fifth, palliative care educational interventions are undermined by the "hidden curriculum" in medical education; interventions must be accompanied by continuing education and faculty development to create lasting change in physician behavior. Sixth, undergraduate and postgraduate medical training is shifting from a time-based training paradigm to competency-based training and evaluation. Seventh, virtually every physician in Canada should be able to provide basic palliative care; physicians in specialized areas of practice should receive palliative care education that is tailored to their area, rather than generic educational interventions. For each key message, one or more implications are provided, which can serve as recommendations for a framework to improve palliative care as a whole in Canada.

Specific training program improves oncologists' palliative care communication skills in a randomized controlled trial.

PubMed

Goelz, Tanja; Wuensch, Alexander; Stubenrauch, Sara; Ihorst, Gabriele; de Figueiredo, Marcelo; Bertz, Hartmut; Wirsching, Michael; Fritzsche, Kurt

2011-09-01

The aim of the study was to demonstrate that COM-ON-p, concise and individualized communication skills training (CST), improves oncologists' communication skills in consultations focusing on the transition to palliative care. Forty-one physicians were randomly assigned to a control (CG) or intervention group (IG). At t(0), all physicians held two video-recorded consultations with actor-patient pairs. Afterward, physicians in the IG participated in COM-ON-p. Five weeks after t(0), a second assessment took place (t(1)). COM-ON-p consists of an 11-hour workshop (1.5 days), pre- and postassessment (2 hours), and coaching (0.5 hours). Physicians focused on practicing individual learning goals with actor patients in small groups. To evaluate the training, blinded raters assessed communication behavior of the physicians in video-recorded actor-patient consultations using a specific checklist. Data were analyzed using a mixed model with baseline levels as covariates. Participants in the IG improved significantly more than those in the CG in all three sections of the COM-ON-Checklist: skills specific to the transition to palliative care, global communication skills, and involvement of significant others (all P < .01). Differences between the CG and IG on the global items of communication skills and involvement of significant others were also significant (P < .01). Effect sizes were medium to large, with a 0.5-point improvement on average on a five-point rating scale. Physicians can be trained to meet better core challenges during the transition to palliative care through developed concise CST. Generalization and transfer into clinical practice must be proven in additional studies.

Can symptom relief be provided in the home to palliative care cancer patients by the primary caregivers? An Indian study.

PubMed

Chellappan, Sheeba; Ezhilarasu, Punitha; Gnanadurai, Angela; George, Reena; Christopher, Solomon

2014-01-01

A large proportion of cancer deaths occur in the developing world, with limited resources for palliative care. Many patients dying at home experience difficult symptoms. The objective of this study was to assess the feasibility of a structured training program on symptom management along with an acute symptom management kit for primary caregivers of cancer patients receiving home care. Descriptive design was used. Thirty primary caregivers of cancer patients attending the palliative care clinic in Vellore, South India, were provided training on the administration of drugs for acute symptoms. A plastic box with partitions for drugs specific to symptom was provided. On follow-up visits, the usage of the kit, drugs used, and routes of administration were noted. A structured questionnaire with a 4-point scale was used to assess primary caregiver views and satisfaction. Of primary caregivers, 96.7% used a kit. The common medications used were morphine, metoclopramide, dexamethasone, and benzodiazepines. Seventy-three percent of primary caregivers administered subcutaneous injections at home. Hospital visits for acute symptoms reduced by 80%; 90% were satisfied with the training received; 73% stated it was not a burden to treat the patient at home. The training program and acute symptom management kit were favorably received and appropriately used by caregivers of diverse backgrounds. Rural backgrounds and illiteracy were not barriers to acceptance. Healthcare professionals should train caregivers during hospital visits, empowering them to manage acute symptoms and provide simple nursing care. This is doubly important in countries where resources are limited and palliative care facilities scarce.

Awareness of incurable cancer status and health-related quality of life among advanced cancer patients: a prospective cohort study.

PubMed

Lee, Myung Kyung; Baek, Sun Kyung; Kim, Si-Young; Heo, Dae Seog; Yun, Young Ho; Park, Sook Ryun; Kim, Jun Suk

2013-02-01

Many patients near death report an interest in knowing their prognoses. Patients' awareness of disease status may lead to more appropriate care and maintained or improved quality of life. However, it is not known whether advanced cancer patients' awareness of disease status is associated with patients' quality of life. We aimed to examine the effect of patients' awareness of disease status on the health-related quality of life (HRQOL) among advanced cancer patients undergoing palliative chemotherapy. In this prospective cohort study, patients were followed-up at 4-6 weeks and 2-3 months after the initial palliative chemotherapy. Patients' awareness of disease status, and demographic and clinical characteristics were assessed at baseline, and depression and anxiety using the Hospital Anxiety and Depression Scale (HADS) and HRQOL using the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30) were assessed three times. In total, 100 patients with advanced cancer starting palliative chemotherapy were recruited from two tertiary university hospitals and from the Korea National Cancer Center. Patients with advanced cancer undergoing palliative chemotherapy experienced deteriorated HRQOL. Of these, the patients who were aware of their disease status as incurable had significantly higher role (p=0.002), emotional (p=0.025), and social functioning (p=0.002), and lower fatigue (p=0.008), appetite loss (p=0.039), constipation (p=0.032), financial difficulties (p=0.019), and anxiety (p=0.041) compared with patients unaware of disease status. Our findings demonstrate the importance of patients' awareness of disease status to HRQOL.

An educational package that supports laycarers to safely manage breakthrough subcutaneous injections for home-based palliative care patients: development and evaluation of a service quality improvement.

PubMed

Healy, Sue; Israel, Fiona; Charles, Margaret A; Reymond, Liz

2013-06-01

Palliative care services strive to support people to live and die well in their chosen environment, with optimal symptom control and a pattern of care supportive of laycarers. The likelihood of patients remaining at home often depends upon laycarers, who may be required to manage subcutaneous medications. This study reports the development, trial and evaluation of a package that teaches laycarers to manage subcutaneous medications used for symptom control in home-based patients. The package was developed by palliative care stakeholders and comprises an educational session, delivered by nurses, and a range of demonstrative, audiovisual and written resources. The package was trialled across 24 sites and was evaluated by 76 laycarers (pre- and post-use) and 53 nurses (at study completion). Outcomes of primary interest were perceived global usefulness of the package and rated relevance of components. Laycarers and nurses rated the usefulness and relevance of the package highly - all means were above 5 on a 7-point scale. Also, laycarers were invited to comment on the package, and three focus groups for 26 nurses explored post hoc issues following package implementation. In terms of the palliative patient's illness trajectory, consensus was that the time for package introduction depended upon each particular clinical situation and laycarer. Nursing opinion was divided concerning whether it is safe and appropriate for laycarers to manage subcutaneous injections. Nevertheless, this study demonstrates that the package supports laycarers to manage subcutaneous medications. This has important implications for families, services and health-care systems.

Five policies to promote palliative care for patients with ESRD.

PubMed

Tamura, Manjula Kurella; Meier, Diane E

2013-10-01

Patients with ESRD experience complex and costly care that does not always meet their needs. Palliative care, which focuses on improving quality of life and relieving suffering for patients with serious illnesses, could address a large unmet need among patients with ESRD. Strengthening palliative care is a top policy priority for health reform efforts based on strong evidence that palliative care improves value. This commentary outlines palliative care policies for patients with ESRD and is directed at policymakers, dialysis providers, nephrology professional societies, accreditation organizations, and funding agencies who play a key role in the delivery and determination of quality of ESRD care. Herein we suggest policies to promote palliative care for patients with ESRD by addressing key barriers, including the lack of access to palliative care, lack of capacity to deliver palliative care, and a limited evidence base. We also provide examples of how these policies could be implemented within the existing ESRD care infrastructure.

Qualitative Research in Palliative Care: Applications to Clinical Trials Work.

PubMed

Lim, Christopher T; Tadmor, Avia; Fujisawa, Daisuke; MacDonald, James J; Gallagher, Emily R; Eusebio, Justin; Jackson, Vicki A; Temel, Jennifer S; Greer, Joseph A; Hagan, Teresa; Park, Elyse R

2017-08-01

While vast opportunities for using qualitative methods exist within palliative care research, few studies provide practical advice for researchers and clinicians as a roadmap to identify and utilize such opportunities. To provide palliative care clinicians and researchers descriptions of qualitative methodology applied to innovative research questions relative to palliative care research and define basic concepts in qualitative research. Body: We describe three qualitative projects as exemplars to describe major concepts in qualitative analysis of early palliative care: (1) a descriptive analysis of clinician documentation in the electronic health record, (2) a thematic content analysis of palliative care clinician focus groups, and (3) a framework analysis of audio-recorded encounters between patients and clinicians as part of a clinical trial. This study provides a foundation for undertaking qualitative research within palliative care and serves as a framework for use by other palliative care researchers interested in qualitative methodologies.

Provision of Palliative Care Services by Family Physicians Is Common.

PubMed

Ankuda, Claire K; Jetty, Anuradha; Bazemore, Andrew; Petterson, Stephen

2017-01-01

Provision of palliative care services by primary care physicians is increasingly important with an aging population, but it is unknown whether US primary care physicians see themselves as palliative practitioners. This study used cross-sectional analysis of data from the 2013 American Board of Family Medicine Maintenance of Certification Demographic Survey. Of 10,894 family physicians, 33.1% (n = 3609) report providing palliative care. Those providing palliative care are significantly more likely to provide non-clinic-based services such as care in nursing homes, home visits, and hospice. Controlling for other characteristics, physicians reporting palliative care provision are significantly ( P < .05) more likely to be older, white, male, rural, and practicing in a patient-centered medical home. One third of family physicians recertifying in 2013 reported providing palliative care, with physician and practice characteristics driving reporting palliative care provision. © Copyright 2017 by the American Board of Family Medicine.

Enhancing palliative care delivery in a regional community in Australia.

PubMed

Phillips, Jane L; Davidson, Patricia M; Jackson, Debra; Kristjanson, Linda; Bennett, Margaret L; Daly, John

2006-08-01

Although access to palliative care is a fundamental right for people in Australia and is endorsed by government policy, there is often limited access to specialist palliative care services in regional, rural and remote areas. This article appraises the evidence pertaining to palliative care service delivery to inform a sustainable model of palliative care that meets the needs of a regional population on the mid-north coast of New South Wales. Expert consultation and an eclectic literature review were undertaken to develop a model of palliative care service delivery appropriate to the needs of the target population and resources of the local community. On the basis of this review, a local palliative care system that is based on a population-based approach to service planning and delivery, with formalized integrated network agreements and role delineation between specialist and generalist providers, has the greatest potential to meet the palliative care needs of this regional coastal community.

Two steps forward, one step back: changes in palliative care consultation services in California hospitals from 2007 to 2011.

PubMed

Pantilat, Steven Z; O'Riordan, David L; Bruno, Kelly A

2014-11-01

The number of palliative care consultation services is growing, yet little is known about how program characteristics change over time. Compare changes in the characteristics of palliative care programs and palliative care consultation services in 2007 and 2011. We surveyed all hospitals in California in 2011 and compared palliative care program and palliative care consultation service characteristics with survey results from 2007. There were 41 new palliative care programs since 2007; 17 programs closed between 2007 and 2011. Hospital characteristics associated with the closure of a palliative care program included a hospital size of 1-149 beds versus 150 or more (p=0.03), for-profit status (p=0.001), and having no system affiliation (p=0.0001). The prevalence of palliative care consultation services was 33% in 2007 and 37% in 2011 (p=0.3). At both time periods nearly all palliative care consultation services (98%) were available onsite during weekday business hours and only half were available at other times (p=0.4). There was an increase (p=0.002) in nurse/physician full-time equivalent (FTE; 2007, mean=1.5; 95% confidence interval [CI]=1.3-1.7; 2011, mean=1.9; 95% CI=1.6-2.2) but fewer teams reported having social workers (58% versus 80%, p=0.002) and chaplains (58% versus 77%, p=0.0001) in 2011. Over half of the palliative care consultation services reported seeing less than 50% of patients who would benefit from a consultation (2007: 59%, 2011=50%, p=0.2), yet most also reported struggling to cope with patient volume (2007: 62%; 2011: 66%, p=0.5). Fewer than half of hospitals in California offer a palliative care program and many close over time. Making palliative care consultation services a condition of participation by insurers could make hospital palliative care consultation services universal. Mechanisms need to be established to improve staffing levels, maintain the interdisciplinary nature of palliative care consultation services, and accommodate demand for services.

Palliative care nursing education features more prominently in 2015 than 2005: Results from a nationwide survey and qualitative analysis of curricula.

PubMed

Martins Pereira, Sandra; Hernández-Marrero, Pablo

2016-10-01

Making palliative care accessible to all citizens who are in need of this type of care requires effective policies and education. Moreover, healthcare professionals have an ethical and legal responsibility to ensure quality palliative care. Nevertheless, palliative care has had traditionally a limited emphasis in healthcare professionals' undergraduate education. To study the current status of palliative care education in nursing undergraduate curricula and compare 2005 and 2015 findings. An online survey was sent to all state schools providing nursing undergraduate education in Portugal (N = 21). The survey assessed if and how palliative care was included in the curricula, and whether or not national and international recommendations for palliative care nursing education were followed. Further analysis included the content of available curricula/syllabi. A total of 19 schools completed the survey (90% of response rate). These institutions are geographically dispersed and representative of state nursing educational institutions in Portugal. In 2015, all participant schools integrated palliative care in their curricula; nine schools had palliative care as an independent curricular unit (an 800% increase compared to 2005). While in 2005, only 14 out of 23 (61%) schools included palliative care explicitly in their curricula; in 2015, all 19 participant schools did so. National and international recommendations were followed. The inclusion of palliative care within nursing undergraduate curricula strongly increased from 2005 to 2015. Further research is needed to understand the contribution of education in the access, care provision, quality and development of palliative care in this country. © The Author(s) 2016.

Improving delirium recognition and assessment for people receiving inpatient palliative care: a mixed methods meta-synthesis.

PubMed

Hosie, Annmarie; Agar, Meera; Lobb, Elizabeth; Davidson, Patricia M; Phillips, Jane

2017-10-01

Delirium is a serious acute neurocognitive condition frequently occurring for hospitalized patients, including those receiving care in specialist palliative care units. There are many delirium evidence-practice gaps in palliative care, including that the condition is under-recognized and challenging to assess. To report the meta-synthesis of a research project investigating delirium epidemiology, systems and nursing practice in palliative care units. The Delirium in Palliative Care (DePAC) project was a two-phase sequential transformative mixed methods design with knowledge translation as the theoretical framework. The project answered five different research questions about delirium epidemiology, systems of care and nursing practice in palliative care units. Data integration and metasynthesis occurred at project conclusion. There was a moderate to high rate of delirium occurrence in palliative care unit populations; and palliative care nurses had unmet delirium knowledge needs and worked within systems and team processes that were inadequate for delirium recognition and assessment. The meta-inference of the DePAC project was that a widely-held but paradoxical view that palliative care and dying patients are different from the wider hospital population has separated them from the overall generation of delirium evidence, and contributed to the extent of practice deficiencies in palliative care units. Improving palliative care nurses' capabilities to recognize and assess delirium will require action at the patient and family, nurse, team and system levels. A broader, hospital-wide perspective would accelerate implementation of evidence-based delirium care for people receiving palliative care, both in specialist units, and the wider hospital setting. Copyright © 2017 Elsevier Ltd. All rights reserved.

Palliative care in patients with haematological neoplasms: An integrative systematic review.

PubMed

Moreno-Alonso, Deborah; Porta-Sales, Josep; Monforte-Royo, Cristina; Trelis-Navarro, Jordi; Sureda-Balarí, Anna; Fernández De Sevilla-Ribosa, Alberto

2018-01-01

Palliative care was originally intended for patients with non-haematological neoplasms and relatively few studies have assessed palliative care in patients with haematological malignancies. To assess palliative care interventions in managing haematological malignancies patients treated by onco-haematology departments. Integrative systematic review with data extraction and narrative synthesis (PROSPERO #: CRD42016036240). PubMed, CINAHL, Cochrane, Scopus and Web-of-Science were searched for articles published through 30 June 2015. Study inclusion criteria were as follows: (1) published in English or Spanish and (2) containing data on palliative care interventions in adults with haematological malignancies. The search yielded 418 articles; 99 met the inclusion criteria. Six themes were identified: (1) end-of-life care, (2) the relationship between onco-haematology and palliative care departments and referral characteristics, (3) clinical characteristics, (4) experience of patients/families, (5) home care and (6) other themes grouped together as 'miscellany'. Our findings indicate that palliative care is often limited to the end-of-life phase, with late referral to palliative care. The symptom burden in haematological malignancies patients is more than the burden in non-haematological neoplasms patients. Patients and families are generally satisfied with palliative care. Home care is seldom used. Tools to predict survival in this patient population are lacking. Despite a growing interest in palliative care for haematological malignancies patients, the evidence base needs to be strengthened to expand our knowledge about palliative care in this patient group. The results of this review support the need to develop closer cooperation and communication between the palliative care and onco-haematology departments to improve patient care.

Effect of dignity therapy on distress and end-of-life experience in terminally ill patients: a randomised controlled trial.

PubMed

Chochinov, Harvey Max; Kristjanson, Linda J; Breitbart, William; McClement, Susan; Hack, Thomas F; Hassard, Tom; Harlos, Mike

2011-08-01

Dignity therapy is a unique, individualised, short-term psychotherapy that was developed for patients (and their families) living with life-threatening or life-limiting illness. We investigated whether dignity therapy could mitigate distress or bolster the experience in patients nearing the end of their lives. Patients (aged ≥18 years) with a terminal prognosis (life expectancy ≤6 months) who were receiving palliative care in a hospital or community setting (hospice or home) in Canada, USA, and Australia were randomly assigned to dignity therapy, client-centred care, or standard palliative care in a 1:1:1 ratio. Randomisation was by use of a computer-generated table of random numbers in blocks of 30. Allocation concealment was by use of opaque sealed envelopes. The primary outcomes--reductions in various dimensions of distress before and after completion of the study--were measured with the Functional Assessment of Chronic Illness Therapy Spiritual Well-Being Scale, Patient Dignity Inventory, Hospital Anxiety and Depression Scale, items from the Structured Interview for Symptoms and Concerns, Quality of Life Scale, and modified Edmonton Symptom Assessment Scale. Secondary outcomes of self-reported end-of-life experiences were assessed in a survey that was undertaken after the completion of the study. Outcomes were assessed by research staff with whom the participant had no previous contact to avoid any possible response bias or contamination. Analyses were done on all patients with available data at baseline and at the end of the study intervention. This study is registered with ClinicalTrials.gov, number NCT00133965. 165 of 441 patients were assigned to dignity therapy, 140 standard palliative care, and 136 client-centred care. 108, 111, and 107 patients, respectively, were analysed. No significant differences were noted in the distress levels before and after completion of the study in the three groups. For the secondary outcomes, patients reported that dignity therapy was significantly more likely than the other two interventions to have been helpful (χ(2)=35·50, df=2; p<0·0001), improve quality of life (χ(2)=14·52; p=0·001), increase sense of dignity (χ(2)=12·66; p=0·002), change how their family saw and appreciated them (χ(2)=33·81; p<0·0001), and be helpful to their family (χ(2)=33·86; p<0·0001). Dignity therapy was significantly better than client-centred care in improving spiritual wellbeing (χ(2)=10·35; p=0·006), and was significantly better than standard palliative care in terms of lessening sadness or depression (χ(2)=9·38; p=0·009); significantly more patients who had received dignity therapy reported that the study group had been satisfactory, compared with those who received standard palliative care (χ(2)=29·58; p<0·0001). Although the ability of dignity therapy to mitigate outright distress, such as depression, desire for death or suicidality, has yet to be proven, its benefits in terms of self-reported end-of-life experiences support its clinical application for patients nearing death. National Cancer Institute, National Institutes of Health. Copyright © 2011 Elsevier Ltd. All rights reserved.

Facilitating advance care planning in community palliative care: conversation starters across the client journey.

PubMed

Blackford, Jeanine; Street, Annette F

2013-03-01

This paper describes the development of a tool for palliative care nurses to initiate and facilitate advance care planning (ACP) conversations in community palliative care practice. Seven community palliative care services located across Australia participated in a multi-site action research project. Data included participant observation, individual and focus group interviews with palliative care health professionals, and medical record audit. A directed content analysis used a pre-established palliative care practice framework of referral, admission, ongoing management, and terminal/discharge care. From this framework a Conversation Starter Tool for ACP was developed. The Tool was then used in orientation and continuing nurse education programmes. It provided palliative care nurses the opportunity to introduce and progress ACP conversations.

A modified systematic review of research evidence about education for pre-registration nurses in palliative care.

PubMed

Bassah, Nahyeni; Seymour, Jane; Cox, Karen

2014-01-01

We undertook a modified systematic review of research regarding educational approaches to and effectiveness of pre-registration palliative care nursing, to inform the development of a short course in palliative care for pre-registration nursing students in Cameroon. The aim of this review was to examine educational approaches applied to pre-registration palliative care nursing education and their effectiveness, and to discuss implications for the development of palliative care curricula in resource-poor countries. A modified systematic review of research on palliative care educational interventions, conducted with pre-registration student nurses was undertaken. Relevant literature was gathered from CINAHL, EMBASE, MEDLINE and PsychINFO databases for the period 2000-2013. Inclusion was limited to studies of educational interventions evaluating the effectiveness and outcomes of palliative and end of life care education with pre-registration student nurses. 17 studies were found, all of which were conducted in resource-rich countries: United States of America, Canada, Australia, and United Kingdom. Palliative care nursing education at pre-registration level is either delivered as a discrete course within the curriculum or palliative care content is embedded into other nursing specialty courses throughout the wider curriculum. Palliative care education is delivered to students at a variety of stages in their nursing program, using a mix of both didactic and experiential educational strategies. Course facilitators span palliative care specialists, educators who have attended 'train-the-trainer' courses in palliative care, and nurses with hospice experience. Education is underpinned by transformative and experiential learning theories and reported as effective in improving students' attitudes towards care of the dying. The educational strategies identified in this review may be applicable to resource-poor countries. However, there are challenges in transferability because of the lack of availability of specialist palliative care practitioners who can serve as educators, specialist palliative care units/institutions for experiential learning, funds to design and use high fidelity simulations, and palliative care textbooks and other educational materials. There is thus a need for innovative educational strategies that can bridge these barriers in resource-poor countries. There is also a need for further research into how palliative care education impacts on pre-registration student nurses' knowledge and practice.

Supportive and palliative care for patients with chronic mental illness including dementia.

PubMed

Lloyd-Williams, Mari; Abba, Katharine; Crowther, Jacqueline

2014-09-01

People with preexisting mental illness are known to have difficulty accessing healthcare services including palliative care and people with dementia have similar issues accessing palliative care. The review addressed the time period from January 2013 to March 2014. There were few articles addressing issues for palliative and supportive care for patients with preexisting mental health issues. The main factor that would improve care is interdisciplinary working between mental healthcare teams and palliative care teams. In contrast, there were many published articles on the palliative and supportive care needs for people with dementia. These articles included consensus statements, models of care; studies of why models of care, for example Advanced Care Planning were not being implemented; and carer reports of care in the last year of life. Urgent research is required as to how support for people with preexisting mental illness who require palliative care can be improved--excellent liaison between mental health and palliative care teams is essential. There is much research on palliative care needs for people with dementia but an apparent lack of innovative approaches to care including care of people within their family home.

Cannabis in End-of-Life Care: Examining Attitudes and Practices of Palliative Care Providers.

PubMed

Luba, Rachel; Earleywine, Mitch; Farmer, Stacey; Slavin, Melissa

2018-05-01

Medical cannabis research has become quite extensive, with indications ranging from glaucoma to chemotherapy-induced nausea. Despite increased interest in cannabis' potential medical uses, research barriers, cannabis legislation, stigma, and lack of dissemination of data contribute to low adoption for some medical populations. Of interest, cannabis use appears low in palliative care settings, with few guidelines available to palliative care providers. The present study sought to examine the attitudes, beliefs, and practices of palliative care providers regarding the use of cannabis for terminally ill patients. Palliative care providers (N = 426) completed a one-time online survey assessing these attitudes, beliefs, and practices. Results demonstrated that palliative care providers endorse cannabis for a wide range of palliative care symptoms, end-of-life care generally, and as an adjuvant medication. Nevertheless, the gap between these beliefs and actual recommendation or prescription appears vast. Many who support the use of cannabis in palliative care do not recommend it as a treatment. These data suggest recommendations for healthcare providers and palliative care organizations.

The international phase 4 validation study of the EORTC QLQ-SWB32: A stand-alone measure of spiritual well-being for people receiving palliative care for cancer.

PubMed

Vivat, B; Young, T E; Winstanley, J; Arraras, J I; Black, K; Boyle, F; Bredart, A; Costantini, A; Guo, J; Irarrazaval, M E; Kobayashi, K; Kruizinga, R; Navarro, M; Omidvari, S; Rohde, G E; Serpentini, S; Spry, N; Van Laarhoven, H W M; Yang, G M

2017-11-01

The EORTC Quality of Life Group has just completed the final phase (field-testing and validation) of an international project to develop a stand-alone measure of spiritual well-being (SWB) for palliative cancer patients. Participants (n = 451)-from 14 countries on four continents; 54% female; 188 Christian; 50 Muslim; 156 with no religion-completed a provisional 36-item measure of SWB plus the EORTC QLQ-C15-PAL (PAL), then took part in a structured debriefing interview. All items showed good score distribution across response categories. We assessed scale structure using principal component analysis and Rasch analysis, and explored construct validity, and convergent/divergent validity with the PAL. Twenty-two items in four scoring scales (Relationship with Self, Relationships with Others, Relationship with Someone or Something Greater, and Existential) explained 53% of the variance. The measure also includes a global SWB item and nine other items. Scores on the PAL global quality-of-life item and Emotional Functioning scale weakly-moderately correlated with scores on the global SWB item and two of the four SWB scales. This new validated 32-item SWB measure addresses a distinct aspect of quality-of-life, and is now available for use in research and clinical practice, with a role as both a measurement and an intervention tool. © 2017 John Wiley & Sons Ltd.

Quality of life in patients with advanced lung cancer treated at home and at a palliative care unit.

PubMed

Leppert, Wojciech; Turska, Anna; Majkowicz, Mikolaj; Dziegielewska, Sylwia; Pankiewicz, Piotr; Mess, Eleonora

2012-08-01

To assess quality of life (QOL) in patients with advanced lung cancer. A prospective study of 78 patients cared at home and at a palliative care unit (PCU) with 2 QOL assessments was conducted. Fifty patients completed the study. In the EORTC QLQ-C30 role, cognitive, social functioning, global QOL, fatigue, pain, dyspnea, and appetite deteriorated; nausea/vomiting improved; dyspnea was more intense in the case of in-home patients. In the EORTC QLQ-LC13 hemoptysis improved; pain in other parts was more intense in the PCU patients. Pain (Visual Analogue scale) was more intense in the PCU patients; the level of activity (Karnofsky) decreased in the case of patients treated at home. QOL deteriorated with few differences between home and the PCU patients.

Priorities for Evaluating Palliative Care Outcomes in Intensive Care Units.

PubMed

Bakitas, Marie; Dionne-Odom, J Nicholas; Kamal, Arif; Maguire, Jennifer M

2015-09-01

Defining the quality of intensive care unit (ICU) care when patients are dying is challenging. Palliative care has been recommended to improve outcomes of dying ICU patients; however, traditional ICU quality indicators do not always align with palliative care. Evidence suggests that some aspects of ICU care improve when palliative care is integrated; however, consensus is lacking concerning the outcomes that should be measured. Overcoming challenges to measuring palliative care will require consensus development and rigorous research on the best way to evaluate ICU palliative care services. Copyright © 2015 Elsevier Inc. All rights reserved.

Embedding a Palliative Approach in Nursing Care Delivery

PubMed Central

Porterfield, Pat; Roberts, Della; Lee, Joyce; Liang, Leah; Reimer-Kirkham, Sheryl; Pesut, Barb; Schalkwyk, Tilly; Stajduhar, Kelli; Tayler, Carolyn; Baumbusch, Jennifer; Thorne, Sally

2017-01-01

A palliative approach involves adapting and integrating principles and values from palliative care into the care of persons who have life-limiting conditions throughout their illness trajectories. The aim of this research was to determine what approaches to nursing care delivery support the integration of a palliative approach in hospital, residential, and home care settings. The findings substantiate the importance of embedding the values and tenets of a palliative approach into nursing care delivery, the roles that nurses have in working with interdisciplinary teams to integrate a palliative approach, and the need for practice supports to facilitate that embedding and integration. PMID:27930401

Grief and Palliative Care: Mutuality

PubMed Central

Moon, Paul J

2013-01-01

Grief and palliative care are interrelated and perhaps mutually inclusive. Conceptually and practically, grief intimately relates to palliative care, as both domains regard the phenomena of loss, suffering, and a desire for abatement of pain burden. Moreover, the notions of palliative care and grief may be construed as being mutually inclusive in terms of one cueing the other. As such, the discussions in this article will center on the conceptualizations of the mutuality between grief and palliative care related to end-of-life circumstances. Specifically, the complementarity of grief and palliative care, as well as a controvertible view thereof, will be considered. PMID:25278758

Flemish palliative care nurses' attitudes toward euthanasia: a quantitative study.

PubMed

Gielen, Joris; van den Branden, Stef; van Iersel, Trudie; Broeckaert, Bert

2009-10-01

To adequately measure the attitudes of Flemish palliative care nurses toward euthanasia, and assess the relationship between these attitudes and demographic factors and the (perceived) influence of experience in palliative care on death anxiety. An anonymous questionnaire was sent to all nurses (n=589) employed in palliative care in Flanders, Belgium: 70.5% of the nurses (n=415) responded. A majority of the nurses supported the Belgian law regulating euthanasia but also believed that most euthanasia requests disappear as soon as a patient experiences the benefits of good palliative care. Three clusters were discovered: staunch advocates of euthanasia (150 nurses, 41.1%); moderate advocates of euthanasia (135 nurses, 37%); and (moderate) opponents of euthanasia (80 nurses, 21.9%). An absolute opposition between advocates and opponents of euthanasia was not observed. A statistically significant relationship was found between the euthanasia clusters and years of experience in palliative care, and (perceived) influence of experience in palliative care on anxiety when a patient dies. Flemish palliative care nurses' attitudes toward euthanasia are nuanced and contextual. By indicating that most euthanasia requests disappear as soon as a patient experiences the benefits of good palliative care, the nurses applied a 'palliative filter' a standard procedure in the case of a euthanasia request.

[Data on palliative care in Germany : Which data sources are available and what do they tell?

PubMed

Prütz, Franziska; Saß, Anke-Christine

2017-01-01

Palliative care is more and more in the focus of politics and the public. Although provision and utilization of palliative care have increased considerably in recent years, there is still a great need for palliative services and a comprehensive supply has not yet been achieved. Reliable and continually available data are indispensable to describe developments in Germany, to identify existing gaps in palliative care provision, and to assess the impact of relevant policies. In this article, we present a systematic outline of publicly available data sources on palliative care in Germany and point out their potentials and limitations. We show that mainly data on palliative care provision are available. Data on utilization are basically limited to inpatient and specialized outpatient palliative care ("spezialisierte ambulante Palliativversorgung", SAPV). Periodical analyses of routine data, e. g. from statutory health insurances or from the Association of Statutory Health Insurance Physicians, would be helpful to fill these data gaps. Monitoring the sociodemographic characteristics of users of palliative care could also be of major interest. Another important indicator is the place of death. The difference between the places where people die and where they wish to die indicates that there is a continuous need to strengthen outpatient structures of palliative care.

Suboptimal palliative sedation in primary care: an exploration.

PubMed

Pype, Peter; Teuwen, Inge; Mertens, Fien; Sercu, Marij; De Sutter, An

2018-02-01

Palliative sedation is a therapeutic option to control refractory symptoms in terminal palliative patients. This study aims at describing the occurrence and characteristics of suboptimal palliative sedations in primary care and at exploring the way general practitioners (GPs) experience suboptimal palliative sedation in their practice. We conducted a mixed methods study with a quantitative prospective survey in primary care and qualitative semi-structured interviews with GPs. The research team defined suboptimal palliative sedation as a time interval until deep sleep >1.5 h and/ or >2 awakenings after the start of the unconsciousness. Descriptive statistics were calculated on the quantitative data. Thematic analysis was used to analyse interview transcripts. We registered 63 palliative sedations in 1181 home deaths, 27 forms were completed. Eleven palliative sedations were suboptimal: eight due to the long time span until deep sleep; three due the number of unintended awakenings. GPs' interview analysis revealed two major themes: the shifting perception of failure and the burden of responsibility. Suboptimal palliative sedation occurs frequently in primary palliative care. Efficient communication towards family members is needed to prevent them from having unrealistic expectations and to prevent putting pressure on the GP to hasten the procedure. Sharing the burden of decision-making during the procedure with other health care professionals might diminish the heavy responsibility as perceived by GPs.

Outpatient Palliative Cardiology Service Embedded Within a Heart Failure Clinic: Experiences With an Emerging Model of Care.

PubMed

Gandesbery, Benjamin; Dobbie, Krista; Gorodeski, Eiran Z

2018-04-01

The role of palliative care consultation in the outpatient treatment of patients with symptomatic heart failure (HF) is poorly studied. In August 2015, we created an outpatient palliative care service embedded within the HF clinic at Cleveland Clinic main campus. To characterize patients cared for by our novel outpatient palliative cardiology service, including their degree of HF, symptoms, comorbidities, topics addressed in clinic, palliative treatments prescribed, advanced directives status, and mortality. We conducted a retrospective chart review of all patients evaluated by this outpatient service. Eighty patients were seen in 229 outpatient encounters. The most commonly reported symptoms were tiredness (74%), pain (64%), dyspnea (57%), drowsiness (45%), anxiety (45%), and depression (43%). The most frequently addressed issues were pain management (55%) and advanced care planning (54%). The most common palliative medications prescribed in palliative care clinic were opiates (48%), laxatives (22%), antineuropathics (22%), and antidepressants (16%). The 1-year survival rate was 70% (CI 65-75%). Embedding palliative medicine services in an HF outpatient clinic is feasible. Patients seen in this setting had an array of quality-of-life limiting symptoms and were medically managed with several interventions familiar to palliative medicine specialists. Outpatients with chronic HF have a significant symptom burden and may benefit from outpatient specialist palliative care.

The International Association for Hospice and Palliative Care: Advancing Hospice and Palliative Care Worldwide.

PubMed

De Lima, Liliana; Radbruch, Lukas

2018-02-01

The International Association for Hospice and Palliative Care (IAHPC) is a membership-based organization dedicated to the development and improvement of hospice and palliative care worldwide. The mission of IAHPC is to improve the quality of life of adults and children with life-threatening conditions and their families. The vision of IAHPC is universal access to high-quality palliative care, integrated into all levels of health care systems in a continuum of care with disease prevention, early diagnosis, and treatment, to assure that any patient's or family caregiver's suffering is relieved to the greatest extent possible. IAHPC focuses on the advancement of four areas of palliative care: education, access to medicines, health policies, and service implementation. IAHPC works on three levels: at the grass roots, developing resources, and educational strategies that enable health workers to provide cost-effective palliative care; at the national level, working with government representatives to improve national policies to ensure adequate care and access to medicines; and at the international level, advocating with the UN organizations to ensure that access to palliative care and to essential medicines for palliative care and pain treatment is stipulated and incorporated as an obligation of member states. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Palliative and end of life care in solid organ transplantation.

PubMed

Wentlandt, K; Weiss, A; O'Connor, E; Kaya, E

2017-12-01

Palliative care is an interprofessional approach that focuses on quality of life of patients who are facing life-threatening illness. Palliative care is consistently associated with improvements in advance care planning, patient and caregiver satisfaction, quality of life, symptom burden, and lower healthcare utilization. Most transplant patients have advanced chronic disease, significant symptom burden, and mortality awaiting transplant. Transplantation introduces new risks including perioperative death, organ rejection, infection, renal insufficiency, and malignancy. Numerous publications over the last decade identify that palliative care is well-suited to support these patients and their caregivers, yet access to palliative care and research within this population are lacking. This review describes palliative care and summarizes existing research supporting palliative intervention in advanced organ failure and transplant populations. A proposed model to provide palliative care in parallel with disease-directed therapy in a transplant program has the potential to improve symptom burden, quality of life, and healthcare utilization. Further studies are needed to elucidate specific benefits of palliative care for this population. In addition, there is a tremendous need for education, specifically for clinicians, patients, and families, to improve understanding of palliative care and its benefits for patients with advanced disease. © 2017 The American Society of Transplantation and the American Society of Transplant Surgeons.

Early Palliative Care-Health services research and implementation of sustainable changes: the study protocol of the EVI project.

PubMed

Meffert, Cornelia; Gaertner, Jan; Seibel, Katharina; Jors, Karin; Bardenheuer, Hubert; Buchheidt, Dieter; Mayer-Steinacker, Regine; Viehrig, Marén; Paul, Christina; Stock, Stephanie; Xander, Carola; Becker, Gerhild

2015-05-29

International medical organizations such as the American Society of Medical Oncology recommend early palliative care as the "gold standard" for palliative care in patients with advanced cancer. Nevertheless, even in Comprehensive Cancer Centers, early palliative care is not yet routine practice. The main goal of the EVI project is to evaluate whether early palliative care can be implemented-in the sense of "putting evidence into practice"-into the everyday clinical practice of Comprehensive Cancer Centers. In addition, we are interested in (1) describing the type of support that patients would like from palliative care, (2) gaining information about the effect of palliative care on patients' quality of life, and (3) understanding the economic burden of palliative care on patients and their families. The EVI project is a multi-center, prospective cohort study with a sequential control group design. The study is a project of the Palliative Care Center of Excellence (KOMPACT) in Baden-Württemberg, Germany, which was recently established to combine the expertise of five academic, specialist palliative care departments. The study is divided into two phases: preliminary phase (months 1-9) and main study phase (months 10-18). In each of all five participating academic Comprehensive Cancer Centers, an experienced palliative care physician will be hired for 18 months. During the preliminary phase, the physician will be allowed time to establish the necessary structures for early palliative care within the Comprehensive Cancer Center. In the main study phase, patients with metastatic cancer will be offered a consultation with the palliative care physician within eight weeks of diagnosis. After the initial consultation, follow-up consultations will be offered as needed. The study is built upon a convergent parallel design. In the quantitative arm, patients will be surveyed in both the preliminary and main study phase at three points in time (baseline, 12 weeks, 24 weeks). Standardized questionnaires will be used to measure patients' quality of life, symptom burden and mood. Using interviews with palliative care physicians, oncologists, department heads, patients and their caregivers, the qualitative arm will explore (1) what factors encourage and hinder the early integration of palliative care into standard oncology care, (2) what support patients and their caregivers would like from palliative care, and (3) what effect palliative care has on the economic disease burden of patients and their families. The study proposed is meant to serve as a catalyzer. Local palliative care teams should be put in position to routinely cooperate with the primary treating department at their respective cancer center. The long-term goal of this project is to create sustainable improvements in the care of patients with incurable cancer. DRKS00006162 ; date of registration: 19/05/2014.

POSITIVE study: physical exercise program in non-operable lung cancer patients undergoing palliative treatment.

PubMed

Wiskemann, Joachim; Hummler, Simone; Diepold, Christina; Keil, Melanie; Abel, Ulrich; Steindorf, Karen; Beckhove, Philipp; Ulrich, Cornelia M; Steins, Martin; Thomas, Michael

2016-07-19

Patients with advanced stage non-small cell lung cancer (NSCLC) or small cell lung cancer (SCLC) often experience multidimensional impairments, affecting quality of life during their course of disease. In lung cancer patients with operable disease, several studies have shown that exercise has a positive impact on quality of life and physical functioning. There is limited evidence regarding efficacy for advanced lung cancer patients undergoing palliative treatment. Therefore, the POSITIVE study aims to evaluate the benefit of a 24-week exercise intervention during palliative treatment in a randomized controlled setting. The POSITIVE study is a randomized, controlled trial investigating the effects of a 24-week exercise intervention during palliative treatment on quality of life, physical performance and immune function in advanced, non-operable lung cancer patients. 250 patients will be recruited in the Clinic for Thoracic Diseases in Heidelberg, enrolment begun in November 2013. Main inclusion criterion is histologically confirmed NSCLC (stage IIIa, IIIb, IV) or SCLC (Limited Disease-SCLC, Extensive Disease-SCLC) not amenable to surgery. Patients are randomized into two groups. Both groups receive weekly care management phone calls (CMPCs) with the goal to assess symptoms and side effects. Additionally, one group receives a combined resistance and endurance training (3x/week). Primary endpoints are quality of life assessed by the Functional Assessment of Cancer Therapy for patients with lung cancer (FACT-L, subcategory Physical Well-Being) and General Fatigue measured by the Multidimensional Fatigue Inventory (MFI-20). Secondary endpoints are physical performance (maximal voluntary isometric contraction, 6-min walk distance), psychosocial (depression and anxiety) and immunological parameters and overall survival. The aim of the POSITIVE trial is the evaluation of effects of a 24-week structured and guided exercise intervention during palliative treatment stages. Analysis of various outcomes (such as quality of life, physical performance, self-efficacy, psychosocial and immunological parameters) will contribute to a better understanding of the potential of exercise in advanced lung cancer patients. In contrast to other studies with advanced oncological patients the POSITIVE trial provides weekly phone calls to support patients both in the intervention and control group and to segregate the impact of physical activity on quality of life. ClinicalTrials.gov NCT02055508 (Date: December 12, 2013).

Association between family satisfaction and caregiver burden in cancer patients receiving outreach palliative care at home.

PubMed

Naoki, Yoko; Matsuda, Yoshinobu; Maeda, Isseki; Kamino, Hideka; Kozaki, Yoko; Tokoro, Akihiro; Maki, Norimasa; Takada, Minoru

2018-06-01

ABSTRACTObjective:Little is known about the associations between family satisfaction with end-of-life care and caregiver burden. We conducted a researcher-assisted questionnaire survey to clarify the impact of caregiver burden on family satisfaction and to determine the types of burden that decrease family satisfaction. Bereaved family caregivers of patients with advanced cancer who received our outreach palliative care service were retrospectively identified. Family satisfaction with the end-of-life care provided by the palliative care service and caregiver burden were quantified using the Japanese versions of the FAMCARE Scale and the Zarit Burden Interview (ZBI), respectively. Our study subjects included 23 family caregivers. The mean scores on the FAMCARE Scale and the ZBI for the total population were 72.8 ± 11.2 and 22.8 ± 17.3, respectively, indicating moderate-to-high satisfaction and low-to-moderate burden. Caregiver burden had a strong negative correlation to family satisfaction with end-of-life care (Spearman's rho [ρ] = -0.560, p = 0.005), which remained after adjustment for potential confounders (standardized beta [β] = -0.563, p = 0.01). Several burden items-including loss of control, personal time, social engagement with others, feeling angry with the patient, feeling that the patient wants more help than he/she needs, and a wish to leave the care to someone else-were associated with decreased satisfaction. The major cause of dissatisfaction for family members included the information provided regarding prognosis, family conferences with medical professionals, and the method of involvement of family members in care decisions. Caregiver burden can be a barrier to family satisfaction with end-of-life care at home. A home care model focused on caregiver burden could improve end-of-life experiences for patients and family caregivers.

Efficacy of two types of palliative sedation therapy defined using intervention protocols: proportional vs. deep sedation.

PubMed

Imai, Kengo; Morita, Tatsuya; Yokomichi, Naosuke; Mori, Masanori; Naito, Akemi Shirado; Tsukuura, Hiroaki; Yamauchi, Toshihiro; Kawaguchi, Takashi; Fukuta, Kaori; Inoue, Satoshi

2018-06-01

This study investigated the effect of two types of palliative sedation defined using intervention protocols: proportional and deep sedation. We retrospectively analyzed prospectively recorded data of consecutive cancer patients who received the continuous infusion of midazolam in a palliative care unit. Attending physicians chose the sedation protocol based on each patient's wish, symptom severity, prognosis, and refractoriness of suffering. The primary endpoint was a treatment goal achievement at 4 h: in proportional sedation, the achievement of symptom relief (Support Team Assessment Schedule (STAS) ≤ 1) and absence of agitation (modified Richmond Agitation-Sedation Scale (RASS) ≤ 0) and in deep sedation, the achievement of deep sedation (RASS ≤ - 4). Secondary endpoints included mean scores of STAS and RASS, deep sedation as a result, and adverse events. Among 398 patients who died during the period, 32 received proportional and 18 received deep sedation. The treatment goal achievement rate was 68.8% (22/32, 95% confidence interval 52.7-84.9) in the proportional sedation group vs. 83.3% (15/18, 66.1-100) in the deep sedation group. STAS decreased from 3.8 to 0.8 with proportional sedation at 4 h vs. 3.7 to 0.3 with deep sedation; RASS decreased from + 1.2 to - 1.7 vs. + 1.4 to - 3.7, respectively. Deep sedation was needed as a result in 31.3% (10/32) of the proportional sedation group. No fatal events that were considered as probably or definitely related to the intervention occurred. The two types of intervention protocol well reflected the treatment intention and expected outcomes. Further, large-scale cohort studies are promising.

Spiritual beliefs near the end of life: a prospective cohort study of people with cancer receiving palliative care.

PubMed

King, Michael; Llewellyn, Henry; Leurent, Baptiste; Owen, Faye; Leavey, Gerard; Tookman, Adrian; Jones, Louise

2013-11-01

Despite growing research interest in spirituality and health, and recommendations on the importance of spiritual care in advanced cancer and palliative care, relationships between spiritual belief and psychological health near death remain unclear. We investigated (i) relationships between strength of spiritual beliefs and anxiety and depression, intake of psychotropic/analgesic medications and survival in patients with advanced disease; and (ii) whether the strength of spiritual belief changes as death approaches. We conducted a prospective cohort study of 170 patients receiving palliative care at home, 97% of whom had a diagnosis of advanced cancer. Data on strength of spiritual beliefs (Beliefs and Values Scale [BVS]), anxiety and depression (Hospital Anxiety and Depression Scale [HADS]), psychotropic/analgesic medications, daily functioning, global health and social support were collected at recruitment then 3 and 10 weeks later. Mortality data were collected up to 34 months after the first patient was recruited. Regression analysis showed a slight increase in strength of spiritual belief over time approaching statistical significance (+0.16 BVS points per week, 95% CI [-0.01, 0.33], p = 0.073). Belief was unrelated to anxiety and depression (-0.15 points decrease in HADS for 10 points increased in BVS (95% CI [-0.57, 0.27], p = 0.49) or consumption of psychotropic medication). There was a non-significant trend for decreasing analgesic prescription with increasing belief. Mortality was higher over 6 months in participants with lower belief at recruitment. Results suggest that although religious and spiritual beliefs might increase marginally as death approaches, they do not affect levels of anxiety or depression in patients with advanced cancer. © 2013 The Authors. Psycho-Oncology published by John Wiley & Sons, Ltd.