The oncological patient in the palliative situation.

PubMed

Eychmueller, Steffen; Zwahlen, Diana; Fliedner, Monica

2014-01-01

Palliative care approaches the patient and his or her suffering with a biopsychosocial-spiritual model. Thus, it is the strength of palliative care to complement the diagnosis driven approach of medical cancer care by a problem and resources-based assessment, participatory care plan, and patient-directed interventions. Interventions need to reflect timely prognosis, target population (the patient, the family carer, the professional), and level of trust and remaining energy. In palliative care the relevance of psycho-oncological aspects in the care of the terminally ill is considerable in the understanding of the overall suffering of patients approaching death and their loved ones and in their care and support. There is little evidence to date in terms of clinical benefit of specific psycho-oncological interventions in the last months or weeks of life, but there is evidence on effects of stress reduction and reduced anxiety if locus of control can stay within the patient as long as possible. One major difficulty in psychosocial research at the end-of-life, however, is defining patient relevant outcomes.

Fatigue in palliative care patients -- an EAPC approach.

PubMed

Radbruch, Lukas; Strasser, Florian; Elsner, Frank; Gonçalves, Jose Ferraz; Løge, Jon; Kaasa, Stein; Nauck, Friedemann; Stone, Patrick

2008-01-01

Fatigue is one of the most frequent symptoms in palliative care patients, reported in .80% of cancer patients and in up to 99% of patients following radio- or chemotherapy. Fatigue also plays a major role in palliative care for noncancer patients, with large percentages of patients with HIV, multiple sclerosis, chronic obstructive pulmonary disease or heart failure reporting fatigue. This paper presents the position of an expert working group of the European Association for Palliative Care (EAPC), evaluating the available evidence on diagnosis and treatment of fatigue in palliative care patients and providing the basis for future discussions. As the expert group feels that culture and language influence the approach to fatigue in different European countries, a focus was on cultural issues in the assessment and treatment of fatigue in palliative care. As a working definition, fatigue was defined as a subjective feeling of tiredness, weakness or lack of energy. Qualitative differences between fatigue in cancer patients and in healthy controls have been proposed, but these differences seem to be only an expression of the overwhelming intensity of cancer-related fatigue. The pathophysiology of fatigue in palliative care patients is not fully understood. For a systematic approach, primary fatigue, most probably related to high load of proinflammatory cytokines and secondary fatigue from concurrent syndromes and comorbidities may be differentiated. Fatigue is generally recognized as a multidimensional construct, with a physical and cognitive dimension acknowledged by all authors. As fatigue is an inherent word only in the English and French language, but not in other European languages, screening for fatigue should include questions on weakness as a paraphrase for the physical dimension and on tiredness as a paraphrase for the cognitive dimension. Treatment of fatigue should include causal interventions for secondary fatigue and symptomatic treatment with

Patient participation in palliative care decisions: An ethnographic discourse analysis

PubMed Central

Bélanger, Emmanuelle; Rodríguez, Charo; Groleau, Danielle; Légaré, France; MacDonald, Mary Ellen; Marchand, Robert

2016-01-01

The participation of patients in making decisions about their care is especially important towards the end of life because palliative care decisions involve extensive uncertainty and are heavily influenced by personal values. Yet, there is a scarcity of studies directly observing clinical interactions between palliative patients and their health care providers. In this study, we aimed to understand how patient participation in palliative care decisions is constructed through discourse in a community hospital-based palliative care team. This qualitative study combined ethnographic observations of a palliative care team with discourse analysis. Eighteen palliative care patients with cancer diagnoses, six family physicians, and two nurses were involved in the study. Multiple interactions were observed between each patient and health care providers over the course of 1 year, for a total of 101 consultations, 24 of which were audio-recorded. The analysis consisted in looking for the interpretive repertoires (i.e., familiar lines of argument used to justify actions) that were used to justify patient participation in decision-making during clinical interactions, as well as exploring their implications for decision roles and end-of-life care. Patients and their health care providers seldom addressed their decision-making roles explicitly. Rather, they constructed patient participation in palliative care decisions in a covert manner. Four interpretive repertoires were used to justify patient participation: (1) exposing uncertainty, (2) co-constructing patient preferences, (3) affirming patient autonomy, and finally (4) upholding the authority of health care providers. The results demonstrate how patients and health care providers used these arguments to negotiate their respective roles in decision-making. In conclusion, patients and health care providers used a variety of interpretive repertoires to covertly negotiate their roles in decision-making, and to legitimize

Experiences of Family Members of Dying Patients Receiving Palliative Sedation.

PubMed

Tursunov, Olga; Cherny, Nathan I; Ganz, Freda DeKeyser

2016-11-01

To describe the experience of family members of patients receiving palliative sedation at the initiation of treatment and after the patient has died and to compare these experiences over time.
. Descriptive comparative study.
. Oncology ward at Shaare Zedek Medical Center in Jerusalem, Israel.
. A convenience sample of 34 family members of dying patients receiving palliative sedation. 
. A modified version of a questionnaire describing experiences of family members with palliative sedation was administered during palliative sedation and one to four months after the patient died. Descriptive statistics were used to describe the results of the questionnaire, and appropriate statistical analyses were conducted for comparisons over time.
. Experiences of family members and time.
. Most relatives were satisfied with the sedation and staff support. Palliative sedation was experienced as an ethical way to relieve suffering. However, one-third felt that it shortened the patient's life. An explanation of the treatment was given less than half of the time and was usually given on the same day treatment was started. This explanation was given by physicians and nurses. Many felt that they were not ready for changes in the patient's condition and wanted increased opportunities to discuss the treatment with oncology care providers. No statistically significant differences in experiences were found over time. 
. Relatives' experiences of palliative sedation were generally positive and stable over time. Important experiences included timing of the initiation of sedation, timing and quality of explanations, and communication.
. Nurses should attempt to initiate discussions of the possible role of sedation in the event of refractory symptoms and follow through with continued discussions. The management of refractory symptoms at the end of life, the role of sedation, and communication skills associated with decision making related to palliative sedation should be a

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.

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

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.

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

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 interventions for hepatocellular carcinoma patients: analysis of the National Cancer Database.

PubMed

Hammad, Abdulrahman Y; Robbins, Jared R; Turaga, Kiran K; Christians, Kathleen K; Gamblin, T Clark; Johnston, Fabian M

2017-01-01

Palliative therapies are provided to a subset of hepatocellular carcinoma (HCC) patients with the aim of providing symptomatic relief, better quality of life and improved survival. The present study sought to assess and compare the efficacy of different palliative therapies for HCC. The National Cancer Database (NCDB), a retrospective national database that captures approximately 70% of all patients treated for cancer in the US, was queried for patients with HCC who were deemed unresectable from 1998-2011. Patients were stratified by receipt of palliative therapy. Survival analysis was examined by log-rank test and Kaplan Meier curves, and a multivariate proportional hazards model was utilized to identify the predictors of survival. A total of 3,267 patients were identified; 287 (8.7%) received surgical palliation, 827 (25.3%) received radiotherapy (RT), 877 (26.8%) received chemotherapy, 1,067 (32.6%) received pain management therapy, while 209 (6.4%) received a combination of the previous three modalities. On multivariate analysis palliative RT was identified as a positive predictor of survival [hazards ratio (HR) 0.65; 95% CI, 0.50-0.83]. Stratifying by disease stage, palliative RT provided a significant survival benefit for patients with stage IV disease. Palliative RT appears to extend survival and should be considered for patients presenting with late stage HCC.

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.

Perceptions of palliative care among patients with advanced cancer and their caregivers

PubMed Central

Zimmermann, Camilla; Swami, Nadia; Krzyzanowska, Monika; Leighl, Natasha; Rydall, Anne; Rodin, Gary; Tannock, Ian; Hannon, Breffni

2016-01-01

Background: Early palliative care is increasingly recommended but seldom practised. We sought to examine perceptions of palliative care among patients with advanced cancer and their caregivers. Methods: After conducting a cluster randomized controlled trial of early palliative care versus standard care for patients with advanced cancer, we approached patients and their caregivers to participate in semistructured interviews seeking to assess, qualitatively, their attitudes and perceptions about palliative care. We used the grounded theory method for data collection and analysis. Results: A total of 48 patients (26 intervention, 22 control) and 23 caregivers (14 intervention, 9 control) completed interviews. Participants’ initial perceptions of palliative care in both trial arms were of death, hopelessness, dependency and end-of-life comfort care for inpatients. These perceptions provoked fear and avoidance, and often originated from interactions with health care professionals. During the trial, those in the intervention arm developed a broader concept of palliative care as “ongoing care” that improved their “quality of living” but still felt that the term itself carried a stigma. Participants in the intervention group emphasized the need for palliative care to be reframed and better explained by health care professionals. Participants in the control group generally considered it pointless to rename palliative care, but many in the intervention group stated emphatically that a different name was necessary in the early outpatient setting. Interpretation: There is a strong stigma attached to palliative care, which may persist even after positive experiences with an early palliative care intervention. Education of the public, patients and health care providers is paramount if early integration of palliative care is to be successful. PMID:27091801

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

How Family Physicians Address Diagnosis and Management of Depression in Palliative Care Patients

PubMed Central

Warmenhoven, Franca; van Rijswijk, Eric; van Hoogstraten, Elise; van Spaendonck, Karel; Lucassen, Peter; Prins, Judith; Vissers, Kris; van Weel, Chris

2012-01-01

PURPOSE Depression is highly prevalent in palliative care patients. In clinical practice, there is concern about both insufficient and excessive diagnosis and treatment of depression. In the Netherlands, family physicians have a central role in delivering palliative care. We explored variation in family physicians’ opinions regarding the recognition, diagnosis, and management of depression in palliative care patients. METHODS We conducted a focus group study in a sample of family physicians with varied practice locations and varying expertise in palliative care. Transcripts were analyzed independently by 2 researchers using constant comparative analysis in ATLAS.ti. RESULTS In 4 focus group discussions with 22 family physicians, the physicians described the diagnostic and therapeutic process for depression in palliative care patients as a continuous and overlapping process. Differentiating between normal and abnormal sadness was viewed as challenging. The physicians did not strictly apply criteria of depressive disorder but rather relied on their clinical judgment and strongly considered patients’ context and background factors. They indicated that managing depression in palliative care patients is mainly supportive and nonspecific. Antidepressant drugs were seldom prescribed. The physicians described difficulties in diagnosing and treating depression in palliative care, and gave suggestions to improve management of depression in palliative care patients in primary care. CONCLUSIONS Family physicians perceive the diagnosis and management of depression in palliative care patients as challenging. They rely on open communication and a long-standing physician-patient relationship in which the patient’s context is of great importance. This approach fits with the patient-centered care that is promoted in primary care. PMID:22778121

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

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.

Improving cancer patients' pain: the impact of the hospital specialist palliative care team.

PubMed

Jack, B; Hillier, V; Williams, A; Oldham, J

2006-12-01

Pain is reported to occur in the majority of patients with advanced cancer and is one of the main reasons for referral to a hospital specialist palliative care team. Yet despite this, there is a paucity of research into the impact the hospital specialist palliative care team has on pain control in patients. A non-equivalent control group design using a quota sample investigated 100 cancer patients who had been admitted to hospital for symptom control. Fifty patients received specialist hospital palliative care team intervention compared with 50 patients receiving traditional care. Outcome was assessed using the Palliative Care Assessment (PACA) tool on three occasions. There was no difference between the groups on the initial assessment and the results indicated that all cancer patients admitted to hospital had a significant improvement in their pain control. However, the patients who had the additional input of the palliative care team demonstrated a statistically significant greater improvement than the control group (P<0.001). Potential explanations are made for the results including the enhanced knowledge and skills of the hospital specialist palliative care team.

Specialist palliative care nurses' management of the needs of patients with depression.

PubMed

Hayes, Jessica Elizabeth; Hart, Bethne; Phillips, Jane

2017-06-02

Depression is an important condition to consider if we are to optimise the care outcomes for patients with palliative care needs. Depression has a high incidence in palliative patients, with up to 15% diagnosed with major depression and 37% expressing some form of depressive symptoms ( O'Connor et al, 2010 ). The challenge is to ensure that palliative care patients with depression are identified in a timely manner and that their depression is effectively managed. To examine how Australian specialist inpatient palliative care nurses perceive, assess and respond to depression in a patient case study. This descriptive pilot study is a replication of a United States study by Little et al (2005) , exploring contemporary Australian specialist palliative care nurses' screening, assessment and management of depression in people with a progressive life-limiting illness. A survey titled 'Specialist palliative care nurses managing patients with complex care needs' questioned the nursing assessment, knowledge and clinical care priorities related to a case vignette of a patient demonstrating signs of depression. A total of 33 nurses completed this survey. Less than half (39.4%) of the participants identified depression as a major issue arising from the case vignette. Depression screening tools were not widely known. Functionality assessments measuring activities of daily living were the most recognised and widely used tools by participants. This small sample pilot study demonstrated that specialist palliative care nurses are still not confident in their screening and responding to a patient with depression. The available evidenced based depression screening tools were unfamiliar to these nurses and not widely used which can result in depression remaining undetected and undermanaged. The connections between physical health and mental health need stronger recognition and response within nursing care of palliative patients.

[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.

Estimation of Need for Palliative Care among Noncancer Patients Attending a Tertiary Care Hospital.

PubMed

Prasad, Parvathy; Sarkar, Sonali; Dubashi, Biswajit; Adinarayanan, S

2017-01-01

Palliative care services, until recently, were mainly restricted to cancer patients with incurable diseases. Hence, evaluative studies of palliative care are sparse in areas other than oncology. To estimate what proportion of patients attending the Departments of Neurology, Cardiology, and Nephrology of Jawaharlal Institute of Postgraduate Medical Education and Research (JIPMER), Puducherry, required palliative care and to identify the palliative care needs of those patients. This was an exploratory descriptive study conducted in the three departments of JIPMER. There was no predetermined sample size for the study. The participants were all adult inpatients and outpatients who were in need of palliative care in the departments of Cardiology, Nephrology, and Neurology on the day of study. Percentage distribution was used to analyze the categorical variables such as education, gender, age, patients in need of palliative care, and their needs. The study showed that one in ten non-cancer patients in tertiary care hospitals may require palliative care services. Apart from issues in physical domain, a substantial proportion of participants also had issues in the psychological, emotional, and financial domains. This study highlights the need for incorporation and initiation of palliative care services in other non-cancer specialties in tertiary care hospitals to ensure holistic management of such cases. Counseling service has also to be rendered as part of palliative care since a good share of the patients had psychological and emotional issues.

Is Higher Acceptance Associated With Less Anticipatory Grief Among Patients in Palliative Care?

PubMed

Davis, Esther L; Deane, Frank P; Lyons, Geoffrey C B; Barclay, Gregory D

2017-07-01

Patients in palliative care can experience substantial psychological suffering. Acceptance-based interventions from approaches such as Acceptance and Commitment Therapy have demonstrated effectiveness in helping people cope with a range of life challenges. However, there is a dearth of research examining mechanisms of therapeutic change for patients in palliative care. To assess the relationships between acceptance, anticipatory grief, anxiety, and depression among patients in palliative care. A cross-sectional survey was verbally administered to inpatients (N = 73) receiving palliative care. Correlations revealed that acceptance had a strong relationship with anticipatory grief, anxiety, and depression. A hierarchical regression analysis on anticipatory grief showed that acceptance was the largest predictor and accounted for an additional 13% of variance in anticipatory grief over and above anxiety and depression. The present study provides preliminary data suggesting that interventions that target acceptance may be indicated in patients in palliative care. Copyright © 2017 American Academy of Hospice and Palliative Medicine. 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 Use Among Patients With Solid Cancer Tumors: A National Cancer Data Base Study.

PubMed

Osagiede, Osayande; Colibaseanu, Dorin T; Spaulding, Aaron C; Frank, Ryan D; Merchea, Amit; Kelley, Scott R; Uitti, Ryan J; Ailawadhi, Sikander

2018-07-01

Palliative care has been increasingly recognized as an important part of cancer care but remains underutilized in patients with solid cancers. There is a current gap in knowledge regarding why palliative care is underutilized nationwide. To identify the factors associated with palliative care use among deceased patients with solid cancer tumors. Using the 2016 National Cancer Data Base, we identified deceased patients (2004-2013) with breast, colon, lung, melanoma, and prostate cancer. Data were described as percentages. Associations between palliative care use and patient, facility, and geographic characteristics were evaluated through multivariate logistic regression. A total of 1 840 111 patients were analyzed; 9.6% received palliative care. Palliative care use was higher in the following patient groups: survival >24 months (17% vs 2%), male (54% vs 46%), higher Charlson-Deyo comorbidity score (16% vs 8%), treatment at designated cancer programs (74% vs 71%), lung cancer (76% vs 28%), higher grade cancer (53% vs 24%), and stage IV cancer (59% vs 13%). Patients who lived in communities with a greater percentage of high school degrees had higher odds of receiving palliative care; Central and Pacific regions of the United States had lower odds of palliative care use than the East Coast. Patients with colon, melanoma, or prostate cancer had lower odds of palliative care than patients with breast cancer, whereas those with lung cancer had higher odds. Palliative care use in solid cancer tumors is variable, with a preference for patients with lung cancer, younger age, known insurance status, and higher educational level.

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

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

Palliative care and human rights in patient care: an Armenia case study.

PubMed

Barros de Luca, Gabriela; Zopunyan, Violeta; Burke-Shyne, Naomi; Papikyan, Anahit; Amiryan, Davit

2017-01-01

This paper examines palliative care within the human rights in patient care framework, which clarifies state obligations and addresses the rights of both patients and providers. In the context of palliative care, these rights extend beyond the right to health and include patient rights to freedom from torture, cruel and inhuman treatment, non-discrimination and equality, bodily integrity, privacy and confidentiality, information, and right to a remedy. They also encompass provider rights to decent working conditions, freedom of association, and due process. The paper then looks at a case study of Armenia, acknowledging how the government's commitment to palliative care, combined with awareness raising and advocacy by human rights organizations, created an enabling environment for the realization of human rights in patient care in the context of palliative care.

Communication about palliative care: A phenomenological study exploring patient views and responses to its discussion.

PubMed

Collins, Anna; McLachlan, Sue-Anne; Philip, Jennifer

2018-01-01

Communication about palliative care is a complex task frequently delayed until otherwise unavoidable. There is a need for discussion of palliative care to be viewed as a distinct communication task that is guided by empirical data. However, little is known of patient views and responses to these encounters. To explore patient views surrounding communication about palliative care and their responses to its discussion. Cross-sectional, prospective, exploratory qualitative design, involving narrative-style interviews and underpinned by an interpretative phenomenological framework. Purposively sampled, English-speaking, adult patients with advanced cancer ( n = 30) recruited from cancer services at a tertiary metropolitan hospital in Melbourne, Australia. Three major themes evolved. (1) Death as unspeakable: death was expressed using only implicit, ambiguous or technical terms and perceived to be outside the parameters of medical interactions. (2) Palliative care as a euphemism for death: the term 'palliative care' was perceived to be used by health professionals as a tool to talk about dying and understood by patients as a euphemism for death. (3) Palliative care as unspeakable: 'palliative care' was personified by patients to mean not just death, but my death, in turn, also becoming unspeakable. This study provides important new patient insights and responses to the discussion of palliative care. Results demonstrate that the task of discussing palliative care remains complex, difficult and limited by our language. Greater consistency, sensitivity and sophistication are required when talking about palliative care to patients who may benefit from this care.

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

Impact of specialist palliative care on coping with Parkinson's disease: patients and carers.

PubMed

Badger, Nathan J; Frizelle, Dorothy; Adams, Debi; Johnson, Miriam J

2018-06-01

UK guidelines recommend palliative care access for people with Parkinson's disease; however, this remains sporadic, and it is unknown whether specialist palliative care helps patients and carers cope with this distressing condition. This study aimed to explore whether, and how, access to specialist palliative care services affected patients' and carers' coping with Parkinson's disease. Semistructured interviews were conducted, audio-recorded and verbatim transcribed. Data were analysed using interpretative phenomenological analysis. Participants were patients with advanced idiopathic Parkinson's disease (n=3), and carers of people with Parkinson's disease (n=5, however, one diagnosis was reviewed) receiving care from an integrated specialist palliative care and Parkinson's disease service in North East England. Access to specialist palliative care helped participants cope with some aspects of advanced Parkinson's disease. Three superordinate themes were developed:' managing uncertainty', 'impacts on the self' and 'specialist palliative care maintaining a positive outlook'. Specialist palliative care helped patients and carers cope with advanced Parkinson's disease. Specialist palliative care is a complex intervention that acknowledges the complex and holistic nature of Parkinson's disease, enabling health in some domains despite continued presence of pathology. These exploratory findings support the utility of this approach for people living with Parkinson's disease. © 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.

Culturally and linguistically diverse palliative care patients' journeys at the end-of-life.

PubMed

Green, Anna; Jerzmanowska, Natalia; Thristiawati, Safrina; Green, Marguerite; Lobb, Elizabeth A

2018-06-04

To understand the clinical and psychosocial journey of culturally and linguistically diverse (CALD) palliative care patients. This study was conducted at a subacute hospital with a specialist palliative care unit and a community palliative care service in a metropolitan region of New South Wales, Australia. Medical records of 100 deceased patients from CALD backgrounds over a 12-month period from 2014 to 2015 were recorded on a data mining tool. The cohort had transitioned to either community or inpatient palliative care services with a life-limiting illness. We used descriptive statistical analyses to identify the patients' end-of-life journeys in the physical, psychological, spiritual, and social palliative care domains. Staff case notes were used to enrich the quantitative data.ResultThe most common symptoms burdening the patients were decreased mobility (82%), pain (76%), and poor appetite (60%). The majority of patients (87%) were diagnosed with cancer. Language was a major barrier to the assessment and management of symptoms. The vast majority of patients were born in Europe and Asia. Twenty-nine percent of the patients preferred to use English. However, among patients who required an interpreter on admission, only 9% used professional interpreters. Family distress around patients' lack of food consumption was prominent, along with provider concern when this led to families "force feeding" patients. Only 5% of files documented patients', and 21% of files documented families', cultural wishes or needs. Care of the body after death was only documented in 20% of files.Significance of resultsThe increasing cohort of older people from CALD backgrounds will have significant implications for the planning and delivery of palliative care services. There is an emerging need to address the physical, psychological, spiritual, and social palliative care domains in the end-of-life journeys of patients from CALD backgrounds to ensure the provision of quality care.

Costs of terminal patients who receive palliative care or usual care in different hospital wards.

PubMed

Simoens, Steven; Kutten, Betty; Keirse, Emmanuel; Berghe, Paul Vanden; Beguin, Claire; Desmedt, Marianne; Deveugele, Myriam; Léonard, Christian; Paulus, Dominique; Menten, Johan

2010-11-01

In addition to the effectiveness of hospital care models for terminal patients, policy makers and health care payers are concerned about their costs. This study aims to measure the hospital costs of treating terminal patients in Belgium from the health care payer perspective. Also, this study compares the costs of palliative and usual care in different types of hospital wards. A multicenter, retrospective cohort study compared costs of palliative care with usual care in acute hospital wards and with care in palliative care units. The study enrolled terminal patients from a representative sample of hospitals. Health care costs included fixed hospital costs and charges relating to medical fees, pharmacy and other charges. Data sources consisted of hospital accountancy data and invoice data. Six hospitals participated in the study, generating a total of 146 patients. The findings showed that palliative care in a palliative care unit was more expensive than palliative care in an acute ward due to higher staffing levels in palliative care units. Palliative care in an acute ward is cheaper than usual care in an acute ward. This study suggests that palliative care models in acute wards need to be supported because such care models appear to be less expensive than usual care and because such care models are likely to better reflect the needs of terminal patients. This finding emphasizes the importance of the timely recognition of the need for palliative care in terminal patients treated in acute wards.

Hospice palliative care volunteers: the benefits for patients, family caregivers, and the volunteers.

PubMed

Claxton-Oldfield, Stephen

2015-06-01

Terminally ill patients and family caregivers can benefit greatly from the support and care provided by trained hospice palliative care volunteers. The benefits of doing this kind of volunteer work also extend to the volunteers themselves, who often say they receive more than they give from the patients/families they are "privileged" to be with. The purpose of this article is to demonstrate how hospice palliative care volunteerism benefits both the patients and families who utilize this service as well as the volunteers. A review of studies demonstrating how terminally ill patients, and especially family caregivers, can benefit from the use of hospice palliative care volunteers and how the volunteers themselves benefit from their experiences. Terminally ill patients and families receive many benefits from using the services of hospice palliative care volunteers, including emotional support, companionship, and practical assistance (e.g., respite or breaks from caregiving). Volunteering in hospice palliative care also provides many benefits for the volunteers, including being able to make a difference in the lives of others, personal growth, and greater appreciation of what is really important in life. More needs to be done to promote the value of hospice palliative care volunteers to those who can really benefit from their support and care (i.e., patients and their families) as well as to help people recognize the potential rewards of being a hospice palliative care volunteer. It is a win-win situation.

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 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.

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.

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.

Changes in symptoms and pain intensity of cancer patients after enrollment in palliative care at home.

PubMed

Dumitrescu, Luminita; van den Heuvel-Olaroiu, Marinela; van den Heuvel, Wim J A

2007-11-01

This study describes the activities and interventions carried out by an at-home palliative care team treating cancer patients who died within two years of being enrolled in a palliative care program. It analyzes which changes in symptoms and pain occurred and which sociodemographic and medical characteristics were related to these changes. The analysis is based on 102 cancer patients. Data were collected through systematic registration during the palliative care process. At enrollment, patients were interviewed by the coordinating general practitioner concerning their sociodemographic background, medical history, psychological status, and symptoms. During the palliative care process, symptoms and functioning of the patients were recorded by the physician and nurses. The results show that cancer patients enrolled in palliative care at home have many symptoms, often associated with metastatic disease and comorbidities. The palliative care teams delivered frequent and various interventions. The number of symptoms decreased considerably, as did pain intensity and the intensity of other symptoms. Patients living in urban areas and with low income particularly benefited from a reduction in the number of symptoms they displayed. Cancer patients who needed palliative care benefited significantly from this at-home palliative care service.

[Organizational and methodological issues in the development of palliative care for oncological patients].

PubMed

Solov'ev, V I

2004-01-01

The share of patients, who apply to oncology facilities with advanced pathologies, shapes up a new situation for oncologists: the sphere of palliative care of both managerial and methodological types must be promoted. Thus, 451299 patients with malignant neoplasms, including those with wide-spread forms (i.e. stages III-IV: 59.1%), were registered in Russia in 2001. One hundred and thirty structural subunits of palliative care were set up in Russia's regions for today; another 58 are being established: however, none of them could be referred to as a perfect one because the role and functions have not yet been defined for palliative care, while all subject-related publications are isolated and scanty. The functioning of hospices and palliative-care subunits is not as a rule coordinated with the oncology service or with oncology experts. This problem should be resolved through setting up the palliative-care regional systems with the role and functions of palliative care being specified for them on the basis of the existing oncology institutes, hospitals and other patient-care facilities. This would maintain the continuity of medical care rendered to oncology patients at all disease stages.

Patients' perception of types of errors in palliative care - results from a qualitative interview study.

PubMed

Kiesewetter, Isabel; Schulz, Christian; Bausewein, Claudia; Fountain, Rita; Schmitz, Andrea

2016-08-11

Medical errors have been recognized as a relevant public health concern and research efforts to improve patient safety have increased. In palliative care, however, studies on errors are rare and mainly focus on quantitative measures. We aimed to explore how palliative care patients perceive and think about errors in palliative care and to generate an understanding of patients' perception of errors in that specialty. A semistructured qualitative interview study was conducted with patients who had received at least 1 week of palliative care in an inpatient or outpatient setting. All interviews were transcribed verbatim and analysed according to qualitative content analysis. Twelve patients from two centers were interviewed (7 women, median age 63.5 years, range 22-90 years). Eleven patients suffered from a malignancy. Days in palliative care ranged from 10 to 180 days (median 28 days). 96 categories emerged which were summed up under 11 umbrella terms definition, difference, type, cause, consequence, meaning, recognition, handling, prevention, person causing and affected person. A deductive model was developed assigning umbrella terms to error-theory-based factor levels (definition, type and process-related factors). 23 categories for type of error were identified, including 12 categories that can be considered as palliative care specific. On the level of process-related factors 3 palliative care specific categories emerged (recognition, meaning and consequence of errors). From the patients' perspective, there are some aspects of errors that could be considered as specific to palliative care. As the results of our study suggest, these palliative care-specific aspects seem to be very important from the patients' point of view and should receive further investigation. Moreover, the findings of this study can serve as a guide to further assess single aspects or categories of errors in palliative care in future research.

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 Edema: Patient Population, Causal Factors, and Types of Edema Referred to a Specialist Palliative Care Edema Service.

PubMed

Real, Shirley; Cobbe, Sinead; Slattery, Sinead

2016-07-01

Edema in palliative care patients is a common symptom, however, the research base for all aspects of its care is extremely poor. To evaluate a specialist palliative care edema service in order to report on the patient population referred, the types of edema encountered, and the causes of edema. Prior to study, three different edema types were described for evaluation: lymphedema, nonlymphatic edema, and a combination of the two. Retrospective chart evaluation was completed from August 2013 through January 2014. Patients with edema assessed by the specialist palliative care physiotherapy edema service. Sixty-three cases were included, comprising 10.5% of all new palliative care referrals during the study period. Ninety-two percent (n = 58) had a diagnosis of cancer and 57% (n = 36) were female. Age ranged from 45-97 years. The most common edema type was a mixed edema (46%, n = 29), followed by lymphedema (27%, n = 18) and nonlymphatic edema (16%, n = 10). Lymphorrhea occurred in 9.5% of cases. The most common reasons for edema, based on clinical opinion, were blocked lymphatics (33%) and dependency from immobility (27%). The most common site for edema was in the lower limbs (89%, n = 56). The time lapse from the last treatment to death ranged from 1-225 days. Having a mixed edema type or lymphorrhea was a relatively poor prognostic sign. This is the first study to describe in detail the occurrence of edema in palliative care patients. Edema may be present for many months prior to death making the search for effective treatments imperative.

Using social exchange theory to understand non-terminal palliative care referral practices for Parkinson's disease patients.

PubMed

Prizer, Lindsay P; Gay, Jennifer L; Perkins, Molly M; Wilson, Mark G; Emerson, Kerstin G; Glass, Anne P; Miyasaki, Janis M

2017-10-01

A palliative approach is recommended in the care of Parkinson's disease patients; however, many patients only receive this care in the form of hospice at the end of life. Physician attitudes about palliative care have been shown to influence referrals for patients with chronic disease, and negative physician perceptions may affect early palliative referrals for Parkinson's disease patients. To use Social Exchange Theory to examine the association between neurologist-perceived costs and benefits of palliative care referral for Parkinson's disease patients and their reported referral practices. A cross-sectional survey study of neurologists. A total of 62 neurologists recruited from the National Parkinson Foundation, the Medical Association of Georgia, and the American Academy of Neurology's clinician database. Participants reported significantly stronger endorsement of the rewards ( M = 3.34, SD = 0.37) of palliative care referrals than the costs ( M = 2.13, SD = 0.30; t(61) = -16.10, p < 0.0001). A Poisson regression found that perceived costs, perceived rewards, physician type, and the number of complementary clinicians in practice were significant predictors of palliative care referral. Physicians may be more likely to refer patients to non-terminal palliative care if (1) they work in interdisciplinary settings and/or (2) previous personal or patient experience with palliative care was positive. They may be less likely to refer if (1) they fear a loss of autonomy in patient care, (2) they are unaware of available programs, and/or (3) they believe they address palliative needs. Initiatives to educate neurologists on the benefits and availability of non-terminal palliative services could improve patient access to this care.

Palliative Care: Increasing the Quality of Life for Patients and Families...

MedlinePlus

... on. Feature: Palliative Care Palliative Care: Increasing the quality of life for patients and families… Past Issues / Spring 2014 ... you as comfortable as possible and improve your quality of life. You don't have to be in hospice ...

From cure to palliation: staff communication, documentation, and transfer of patient.

PubMed

Löfmark, Rurik; Nilstun, Tore; Bolmsjö, Ingrid Agren

2005-12-01

In the transition from curative treatment to palliative care of a general end-of-life patient population, the internal communication of the acute care staff seems to be less than optimal. The communication had reference to the dialogue within the staff both before and after the decision to concentrate on palliative care, and possible transfer of the patient. This survey of Swedish nurses and physicians showed that most of 780 respondents wanted more internal communication, and a more individualized procedure of decision-making. All staff should be informed about the decision made but full agreement was not seen as realistic. The largest difference of opinion between nurses and physicians concerned the involvement of nurses in the decision-making about the transition. A uniform documentation of the decision to transfer care focus was the ideal. Approximately every fourth patient in acute care is transferred to receive palliative care. Only approximately half of the respondents had any training in palliative care and the majority wanted more training. There seems to be a need for more palliative care training, perhaps somewhat different for each specialty. Furthermore, a common language to enable nurses and physicians to communicate more easily may improve the transition process.

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.

Prevalence and Nature of Spiritual Distress Among Palliative Care Patients in India.

PubMed

Gielen, Joris; Bhatnagar, Sushma; Chaturvedi, Santosh K

2017-04-01

In palliative care research, little attention has been paid to the empirical study of spirituality in patients in non-Western countries. This study describes the prevalence and nature of spiritual distress among Indian palliative care patients. Data from 300 adult cancer patients who had completed a questionnaire with 36 spirituality items were analyzed. Spirituality was shaped by the Indian religious and economic context. A latent class analysis resulted in three clusters: trustful patients (46.4 %), spiritually distressed patients (17.4 %), and patients clinging to divine support (36.2 %). After regression, the clusters were found to be associated with pain scores (p < .001), gender (p = .034), and educational level (p < .006). More than half of the patients would benefit from spiritual counselling. More research and education on spirituality in Indian palliative care is urgently required.

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.

Level of consciousness in dying patients. The role of palliative sedation: a longitudinal prospective study.

PubMed

Claessens, Patricia; Menten, Johan; Schotsmans, Paul; Broeckaert, Bert

2012-05-01

Patients suffering from a terminal illness often are confronted with severe symptoms during the last phase of their lives. Palliative sedation, although one of the options of last resort, remains a much debated and controversial issue and is often referred to as a form of slow euthanasia or euthanasia in disguise. A prospective longitudinal and descriptive design was used. Each patient admitted in one of the 8 participating units was included if they met the inclusion criteria and gave written informed consent. 266 patients were included. The incidence of palliative sedation was 7;5%. For the group of sedated patients results show that 90% entered the palliative care unit being fully conscious. Two patients were comatose upon arrival. 90% of the patients remained fully conscious up to the day palliative sedation was started. When looking at the effect of palliative sedation on the level of consciousness the analysis strongly suggest that the palliative sedation - as expected- has an impact on the GCS score. Irrespective of the dichotomization of the score the probability of having a lower GCS increases substantially once sedation is initiated. Additionally, results show that once palliative sedation is administered, the level of consciousness gradually goes down up until the day of death. Palliative sedation is nor slow euthanasia nor an ambivalent practice. It is an intentional medical treatment which is administered in a proportional way when refractory suffering occurs. It occurs in extraordinary situations and at the very end of the dying process.

A framework for complexity in palliative care: A qualitative study with patients, family carers and professionals.

PubMed

Pask, Sophie; Pinto, Cathryn; Bristowe, Katherine; van Vliet, Liesbeth; Nicholson, Caroline; Evans, Catherine J; George, Rob; Bailey, Katharine; Davies, Joanna M; Guo, Ping; Daveson, Barbara A; Higginson, Irene J; Murtagh, Fliss Em

2018-06-01

Palliative care patients are often described as complex but evidence on complexity is limited. We need to understand complexity, including at individual patient-level, to define specialist palliative care, characterise palliative care populations and meaningfully compare interventions/outcomes. To explore palliative care stakeholders' views on what makes a patient more or less complex and insights on capturing complexity at patient-level. In-depth qualitative interviews, analysed using Framework analysis. Semi-structured interviews across six UK centres with patients, family, professionals, managers and senior leads, purposively sampled by experience, background, location and setting (hospital, hospice and community). 65 participants provided an understanding of complexity, which extended far beyond the commonly used physical, psychological, social and spiritual domains. Complexity included how patients interact with family/professionals, how services' respond to needs and societal perspectives on care. 'Pre-existing', 'cumulative' and 'invisible' complexity are further important dimensions to delivering effective palliative and end-of-life care. The dynamic nature of illness and needs over time was also profoundly influential. Adapting Bronfenbrenner's Ecological Systems Theory, we categorised findings into the microsystem (person, needs and characteristics), chronosystem (dynamic influences of time), mesosystem (interactions with family/health professionals), exosystem (palliative care services/systems) and macrosystem (societal influences). Stakeholders found it acceptable to capture complexity at the patient-level, with perceived benefits for improving palliative care resource allocation. Our conceptual framework encompasses additional elements beyond physical, psychological, social and spiritual domains and advances systematic understanding of complexity within the context of palliative care. This framework helps capture patient-level complexity and target

Objective and subjective nutritional assessment of patients with cancer in palliative care.

PubMed

Kwang, Ang Yee; Kandiah, Mirnalini

2010-03-01

This study aimed to evaluate the nutritional status of patients with cancer in palliative care and to examine the interrelationship between objective and subjective nutritional assessment measures. Patients' nutritional status in a palliative care unit of a Malaysian government hospital and a hospice facility were assessed using anthropometric measurements, weight loss at 1/6 months, and the scored patient-generated subjective global assessment (PG-SGA). Moderate-to-severe malnutrition was observed in a range from 31% to 69% using both measurements. Common nutritional impact symptoms were pain, xerostomia, and anorexia. Patient-generated subjective global assessment scores were significantly correlated with anthropometric measurements (P < .050). The PG-SGA is equally informative as objective indicators and is recommended as a quickly applied tool for nutritional status assessment of patients with cancer in palliative care.

Palliative care experiences of adult cancer patients from ethnocultural groups: a qualitative systematic review protocol.

PubMed

Busolo, David; Woodgate, Roberta

2015-01-01

The objective of this review is to synthesize the best available evidence on palliative care experiences of adult cancer patients from ethnocultural groups.More specifically, this systematic review seeks to answer the following questions:1. What are the palliative care experiences of adult cancer patients from diverse ethnocultural groups?2. What meanings do adult patients with cancer from diverse ethnocultural groups assign to their experiences with palliative care? Globally, over 20.4 million people need palliative care services annually. The majority of these people (19 million) are adults, with 34% of them being patients diagnosed with cancer. With the current increase in the aging population, especially in developed countries, the number of adults requiring palliative care is expected to rise. Furthermore, how palliative care is offered and received continues to be shaped by culture and ethnicity. Likewise, culture and ethnicity influence how palliative care patients experience diseases like cancer, and seek and utilize palliative care services. Also, healthcare providers sometimes find it challenging to address the palliative care needs of patients from different ethnocultural groups. Sometimes these challenges are believed to be due to cultural incompetence of the care provider. When palliative care patients and their providers differ in their perception of care needs and how to address them, negative palliative care experiences are likely to ensue. Therefore, as the demand for palliative care increases, and ethnocultural factors continue to affect palliation, it is important to gain a better understanding of palliative care experiences of patients from different ethnocultural groups.The terms culture and ethnicity have been defined and used differently in literature which sometimes lead to confusion. Ethnicity has been defined as distinctive shared origins or social backgrounds and traditions of a group of people that are maintained between generations and

Association between the Availability of Hospital-Based Palliative Care and Treatment Intensity for Critically Ill Patients.

PubMed

Hua, May; Ma, Xiaoyue; Morrison, R Sean; Li, Guohua; Wunsch, Hannah

2018-05-29

In the intensive care unit (ICU), studies involving specialized palliative care services have shown decreases in the use of non-beneficial life-sustaining therapies and ICU length of stay for patients. However, whether widespread availability of hospital-based palliative care is associated with less frequent use of high intensity care is unknown. To determine whether availability of hospital-based palliative care is associated with decreased markers of treatment intensity for ICU patients. Retrospective cohort study of adult ICU patients in New York State hospitals, 2008-2014. Multilevel regression was used to assess the relationship between availability of hospital-based palliative care during the year of admission and hospital length of stay, use of mechanical ventilation, dialysis and artificial nutrition, placement of a tracheostomy or gastrostomy tube, days in ICU and discharge to hospice. Of 1,025,503 ICU patients in 151 hospitals, 814,794 (79.5%) received care in a hospital with a palliative care program. Hospital length of stay was similar for patients in hospitals with and without palliative care programs (6 days, interquartile range (IQR) 3-12 vs. 6 days, IQR 3-11, adjusted rate ratio 1.04 [1.03 to 1.05], p < 0.001), as were other healthcare utilization outcomes. However, patients in hospitals with palliative care programs were 46% more likely to be discharged to hospice than those in hospitals without palliative care programs (1.7% vs. 1.4%, adjusted odds ratio 1.46 [1.30 to 1.64], p<0.001). Availability of hospital-based palliative care was not associated with differences in in-hospital treatment intensity but was associated with significantly increased hospice utilization for ICU patients. At this time, the measurable benefit of palliative care programs for critically ill patients may be the increased use of hospice facilities, as opposed to decreased healthcare utilization during an ICU-associated hospitalization.

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.

Mindfulness for palliative care patients. Systematic review.

PubMed

Latorraca, Carolina de Oliveira Cruz; Martimbianco, Ana Luiza Cabrera; Pachito, Daniela Vianna; Pacheco, Rafael Leite; Riera, Rachel

2017-12-01

Nineteen million adults worldwide are in need of palliative care. Of those who have access to it, 80% fail to receive an efficient management of symptoms. To assess the effectiveness and safety of mindfulness meditation for palliative care patients. We searched CENTRAL, MEDLINE, Embase, LILACS, PEDro, CINAHL, PsycINFO, Opengrey, ClinicalTrials.gov and WHO-ICTRP. No restriction of language, status or date of publication was applied. We considered randomised clinical trials (RCTs) comparing any mindfulness meditation scheme vs any comparator for palliative care. Cochrane Risk of Bias (Rob) Table was used for assessing methodological quality of RCTs. Screening, data extraction and methodological assessments were performed by two reviewers. Mean differences (MD) (confidence intervals of 95% (CI 95%)) were considered for estimating effect size. Quality of evidence was appraised by GRADE. Four RCTs, 234 participants, were included. All studies presented high risk of bias in at least one RoB table criteria. We assessed 4 comparisons, but only 2 studies showed statistically significant difference for at least one outcome. 1. Mindfulness meditation (eight weeks, one session/week, daily individual practice) vs control: statistically significant difference in favour of control for quality of life - physical aspects. 2. Mindfulness meditation (single 5-minute session) vs control: benefit in favour of mindfulness for stress outcome in both time-points. None of the included studies analysed safety and harms outcomes. Although two studies have showed statistically significant difference, only one showed effectiveness of mindfulness meditation in improving perceived stress. This study focused on one single session of mindfulness of 5 minutes for adult cancer patients in palliative care, but it was considered as possessing high risk of bias. Other schemes of mindfulness meditation did not show benefit in any outcome evaluated (low and very low quality evidence). © 2017 John Wiley

Integrated palliative care networks from the perspectives of patients: A cross-sectional explorative study in five European countries.

PubMed

den Herder-van der Eerden, Marlieke; Ebenau, Anne; Payne, Sheila; Preston, Nancy; Radbruch, Lukas; Linge-Dahl, Lisa; Csikos, Agnes; Busa, Csilla; Van Beek, Karen; Groot, Marieke; Vissers, Kris; Hasselaar, Jeroen

2018-06-01

Although examining perspectives of patients on integrated palliative care organisation is essential, available literature is largely based on administrative data or healthcare professionals' perspectives. (1) Providing insight into the composition and quality of care networks of patients receiving palliative care and (2) describing perceived integration between healthcare professionals within these networks and its association with overall satisfaction. Cross-sectional explorative design. We recruited 157 patients (62% cancer, 25% chronic obstructive pulmonary disease, 13% chronic heart failure, mean age 68 years, 55% female) from 23 integrated palliative care initiatives in Belgium, Germany, the United Kingdom, Hungary and the Netherlands. About 33% reported contact with a palliative care specialist and 48% with a palliative care nurse. Relationships with palliative care specialists were rated significantly higher than other physicians ( p < 0.001). Compared to patients with cancer, patients with chronic obstructive pulmonary disease (odds ratio = 0.16, confidence interval (0.04; 0.57)) and chronic heart failure (odds ratio = 0.11, confidence interval (0.01; 0.93)) had significantly lower odds of reporting contact with palliative care specialists and patients with chronic obstructive pulmonary disease (odds ratio = 0.23, confidence interval (0.08; 0.71)) had significantly lower odds of reporting contact with palliative care nurses. Perceptions of main responsible healthcare professionals or caregivers in patient's care networks varied across countries. Perceived integration was significantly associated with overall satisfaction. Palliative care professionals are not always present or recognised as such in patients' care networks. Expert palliative care involvement needs to be explicated especially for non-cancer patients. One healthcare professional should support patients in understanding and navigating their palliative care network. Patients

Patients' sense of security during palliative care-what are the influencing factors?

PubMed

Milberg, Anna; Friedrichsen, Maria; Jakobsson, Maria; Nilsson, Eva-Carin; Niskala, Birgitta; Olsson, Maria; Wåhlberg, Rakel; Krevers, Barbro

2014-07-01

Having a sense of security is vitally important to patients who have a limited life expectancy. We sought to identify the factors associated with patients' sense of security during the palliative care period. We recruited 174 adult patients (65% of those eligible) from six palliative home care units. The relationship between the patients' sense of security during palliative care and individual factors was evaluated in a stepwise procedure using the generalized linear model (ordinal multinomial distribution and logit link). Respondents' ratings of their sense of security ranged from 1 (never) to 6 (always), with a mean value of 4.6 (SD 1.19). Patients with lower feelings of security experienced higher stress; more worry about personal finances; lower feelings of self-efficacy; a lower sense of security with the palliative care provided (lower ratings on subscales of care interaction); mastery; prevailed own identity; higher symptom intensity (especially depression, anxiety, and lack of well-being); lower health-related quality of life; lower attachment anxiety and avoidance; less support from family, relatives, and friends; lower comfort for those closest to them; and more often had gynecological cancer. Six variables (mastery, nervousness and stress, gynecological cancer, self-efficacy, worrying about personal finances, and avoidance) were selected in building the stepwise model. These findings stress the importance of palliative care services in supporting dying patients' sense of security through symptom management with a wide scope and through supporting the patients' sense of mastery, identity, and perception of a secure care interaction and also through attention to the family members' situation. Copyright © 2014 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

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.

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.

A qualitative analysis of the nutritional requirements of palliative care patients.

PubMed

Muir, C I; Linklater, G T

2011-10-01

The National Health Servive (NHS) Quality Improvement Scotland developed nutritional Clinical Standards to address the problem of malnutrition in hospitals. NHS palliative care units are obliged to incorporate these standards into nutritional aspects of care. The nutritional needs of this patient population are under-researched. The present study aimed to explore patients' views of nutrition, to begin to understand their concerns and to determine whether such standards meet the needs of patients in the palliative care setting. A qualitative study was conducted in 2009 in an NHS Palliative Care Unit. Six inpatients were involved in one-to-one interviews, which were audiotaped and transcribed verbatim. The transcripts were subject to qualitative data analysis in accordance with a previous framework. A recurring theme that emerged was that of change and uncertainty. Four main areas subject to change were: disease state, symptoms, oral dietary intake and weight. Each change could exert control over, or be controlled by, the patient. When patients were eventually unable to exert control, they accepted the change, either willingly or enforced, thereby unintentionally setting their own targets. The present study enables a deeper understanding of the concerns that palliative care patients have regarding their oral dietary intake and weight. Their 'malnutrition' not only refers to physical malnutrition alone, but also incorporates psychological and social 'malnutrition'. When applying standards or protocols regarding nutritional care, these wider issues must be taken into account to meet patients' nutritional needs. © 2011 The Authors. Journal of Human Nutrition and Dietetics © 2011 The British Dietetic Association Ltd.

Is admittance to specialised palliative care among cancer patients related to sex, age and cancer diagnosis? A nation-wide study from the Danish Palliative Care Database (DPD).

PubMed

Adsersen, Mathilde; Thygesen, Lau Caspar; Jensen, Anders Bonde; Neergaard, Mette Asbjoern; Sjøgren, Per; Groenvold, Mogens

2017-03-23

Specialised palliative care (SPC) takes place in specialised services for patients with complex symptoms and problems. Little is known about what determines the admission of patients to SPC and whether there are differences in relation to institution type. The aims of the study were to investigate whether cancer patients' admittance to SPC in Denmark varied in relation to sex, age and diagnosis, and whether the patterns differed by type of institution (hospital-based palliative care team/unit, hospice, or both). This was a register-based study of adult patients living in Denmark who died from cancer in 2010-2012. Data sources were the Danish Palliative Care Database, Danish Register of Causes of Death and Danish Cancer Registry. The associations between the explanatory variables (sex, age, diagnosis) and admittance to SPC were investigated using logistic regression. In the study population (N = 44,548) the overall admittance proportion to SPC was 37%. Higher odds of overall admittance to SPC were found for women (OR = 1.23; 1.17-1.28), younger patients (<40 compared with 80+ years old) (OR = 6.44; 5.19-7.99) and patients with sarcoma, pancreatic and stomach cancers, whereas the lowest were for patients with haematological malignancies. The higher admission found for women was most pronounced for hospices compared to hospital-based palliative care teams/units, whereas higher admission of younger patients was more pronounced for hospital-based palliative care teams/units. Patients with brain cancer were more often admitted to hospices, whereas patients with prostate cancer were more often admitted to hospital-based palliative care teams/units. It is unlikely that the variations in relation to sex, age and cancer diagnoses can be fully explained by differences in need. Future research should investigate whether the groups having the lowest admittance to SPC receive sufficient palliative care elsewhere.

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.

Medication management for community palliative care patients and the role of a specialist palliative care pharmacist: A qualitative exploration of consumer and health care professional perspectives.

PubMed

Kuruvilla, Lisha; Weeks, Greg; Eastman, Peter; George, Johnson

2018-05-01

Pharmacists have a key role to play in optimisation of medication regimens and promotion of medication safety. The role of specialist pharmacists as part of the multidisciplinary palliative care team, especially in the primary care setting, is not widely recognised. To explore the perspectives of stakeholders about the gaps in the current model of community palliative care services in relation to medication management and to assess their opinions pertaining to the role of a specialist palliative care pharmacist in addressing some of those gaps. Qualitative study utilising three focus groups involving 20 stakeholders. Thematic analysis was carried out using a framework approach and interpreted in the context of the Chronic Care Model for improving primary care for patients with chronic illness. Setting was a large regional Australian palliative care service. Participants included palliative care consumers and clinicians specifically patients, caregivers, physicians, nurses and pharmacists. Five major themes emerged from the focus groups: access to resources, medicines and information; shared care; challenges of polypharmacy; informal caregiver needs and potential roles of a palliative care pharmacist. Gaps in access to medicines/resources, training for generalist practitioners, communication between treating teams and lack of support for patients and carers were cited as factors adversely impacting medication management in community-based palliative care. While community-based palliative care is an essential aspect of meeting the health care demands of an ageing society, the current model has several gaps and limitations. An appropriately qualified and skilled pharmacist within the palliative care team may help to address some of the gaps in relation to medication access and appropriateness.

Supportive palliative care should be integrated into routine care for paediatric patients with life-limiting kidney disease.

PubMed

Thumfart, Julia; Reindl, Tobias; Rheinlaender, Cornelia; Müller, Dominik

2018-03-01

Paediatric palliative care is no longer restricted to patients with cancer and has been extended to patients with other chronic conditions, such as cystic fibrosis or neuromuscular disorders. This review focused on the current state of palliative care for children and adolescents with chronic kidney disease (CKD). We assessed the literature on CKD published up to August 2017. All the papers, except one from 1996, were published this century. This review discusses the role that palliative care plays in the process of decision-making and explores the possibilities of implementing palliative care into the routine therapy of affected patients and providing support for their families. Offering early palliative care as an integral part of the kidney, supportive care provided by the nephrology care team is both necessary and feasible for patients with CKD. As a minimum, a specialised palliative care team should be involved in patients with multiple comorbidities, in conservative treatment scenarios and in acute life-threatening complications. Further studies and guidelines are required to improve the care of patients with CKD and their families. Supportive palliative care should be implemented into the routine care of patients with life-limiting kidney disease. ©2017 Foundation Acta Paediatrica. Published by John Wiley & Sons Ltd.

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.

[Palliative sedation at a university palliative care unit--a descriptive analysis].

PubMed

Hopprich, A; Günther, L D; Laufenberg-Feldmann, R; Reinholz, U; Weber, M

2016-04-01

Palliative sedation (pS) is indicated in the presence of end-stage disease with treatment-refractory symptoms not tolerable for the patient. We investigated the practice of pS at a university palliative care unit. Before starting pS the following data were documented: indication and decision making, type of sedation, life expectancy evaluated by the physician using the palliative prognostic index. Over the time of pS communication skills, depth of sedation, relief in symptoms, substitution of fluid and nutrition and used medications were collected. During evaluation time 99 patients died. 34 patients received pS (34 %). All patients suffered from cancer. Indications for palliative sedation were: terminal restlessness (56 %), dyspnea (39 %), pain (32 %), psychological distress (15 %), agitated delir (9 %), vomiting (3 %) and bleeding (3 %) (multiple nominations possible). In 31 cases (91 %) nurses were included for decision making. In 33 cases continuous sedation were initiated immediately (median duration 27.5 hours). The most applied medication was midazolam (94 %), sometimes combined with neuroleptics (44 %) and propofol (15 %). 91 % of the patients additionally received opioids. Artificial fluid was substituted in two cases. Palliative sedation started in the median 27.5 hours before death. The final physician assessment revealed complete symptom relief in 12 patients (35 %), very strong symptom relief in 20 patients (59 %) and moderate symptom relief in 2 patients (6 %). pS was successfully used as last resort for relief of treatment-refractory symptoms in one third of decedents at the investigated palliative care unit. © Georg Thieme Verlag KG Stuttgart · New York.

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

Out-of-hospital opioid therapy of palliative care patients with "acute dyspnoea": a retrospective multicenter investigation.

PubMed

Wiese, Christoph H R; Barrels, Utz E; Graf, Bernhard M; Hanekop, Gerd G

2009-01-01

Prehospital emergency physicians (EP) are often confronted with the acute care of palliative care patients. Dyspnoea is a frequent acute symptom and its causes often differ from the generally known emergency medical causes. Till now, there have been no relevant concepts for emergency care of palliative care patients for their specific symptoms. Over a 24-month period, the authors retrospectively investigated all out-of-hospital emergency medical services for palliative care patients with acute dyspnoea at four emergency physician support points. The evaluation of these services was followed retrospectively on the basis of the therapy carried out by the EP (Group 1: therapy with morphine and oxygen; Group 2: therapy with morphine, bronchodilator effective drugs and oxygen; Group 3: therapy with bronchodilator effective drugs and oxygen; Group 4: therapy with oxygen; Group 5: no medical treatment). Moreover, EPs were interviewed about their actions and their uncertainties in the treatment of palliative care patients. The diagnosis of acute dyspnoea in palliative care patients occurred 121 times (116 patients were integrated in the present investigation) within the defined period. In total, 116 patients were included (Group 1: 21, Group 2: 29, Group 3: 31, Group 4: 28, and Group 5: 7). Dyspnoea was satisfactorily treated in 41 percent of the patients (Group 1: 67 percent, Group 2: 52 percent, Group 3: 22 percent, Group 4: 18 percent, and Group 5: 71 percent). Most EPs (70 percent) revealed uncertainties in emergency medical therapy for patients at the end of life. The current investigation showed a significant relief of acute dyspnoea when using opioids, in contrast with the established out-of-hospital emergency medical therapy for acute dyspnoea. Therefore, opioids should be recommended for emergency medical therapy of dyspnoea in palliative care patients. Clinical studies that recommend the use of effective opioids for the treatment of dyspnoea in palliative care

[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.

A conceptual model: Redesigning how we provide palliative care for patients with chronic obstructive pulmonary disease.

PubMed

Philip, Jennifer; Crawford, Gregory; Brand, Caroline; Gold, Michelle; Miller, Belinda; Hudson, Peter; Smallwood, Natasha; Lau, Rosalind; Sundararajan, Vijaya

2017-05-31

Despite significant needs, patients with chronic obstructive pulmonary disease (COPD) make limited use of palliative care, in part because the current models of palliative care do not address their key concerns. Our aim was to develop a tailored model of palliative care for patients with COPD and their family caregivers. Based on information gathered within a program of studies (qualitative research exploring experiences, a cohort study examining service use), an expert advisory committee evaluated and integrated data, developed responses, formulated principles to inform care, and made recommendations for practice. The informing studies were conducted in two Australian states: Victoria and South Australia. A series of principles underpinning the model were developed, including that it must be: (1) focused on patient and caregiver; (2) equitable, enabling access to components of palliative care for a group with significant needs; (3) accessible; and (4) less resource-intensive than expansion of usual palliative care service delivery. The recommended conceptual model was to have the following features: (a) entry to palliative care occurs routinely triggered by clinical transitions in care; (b) care is embedded in routine ambulatory respiratory care, ensuring that it is regarded as "usual" care by patients and clinicians alike; (c) the tasks include screening for physical and psychological symptoms, social and community support, provision of information, and discussions around goals and preferences for care; and (d) transition to usual palliative care services is facilitated as the patient nears death. Our proposed innovative and conceptual model for provision of palliative care requires future formal testing using rigorous mixed-methods approaches to determine if theoretical propositions translate into effectiveness, feasibility, and benefits (including economic benefits). There is reason to consider adaptation of the model for the palliative care of patients with

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.

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.

Structural Challenges of Providing Palliative Care for Patients with Breast Cancer

PubMed Central

Khoshnazar, Tahereh Alsadat Khoubbin; Rassouli, Maryam; Akbari, Mohammad Esmaeil; Lotfi-Kashani, Farah; Momenzadeh, Syrus; Haghighat, Shahpar; Sajjadi, Moosa

2016-01-01

Introduction: To establish a palliative care system (PCS) in Iran, it is necessary to identify the potential barriers. Aim: This study aims to highlight the views of stakeholders to know the challenges of providing palliative care for women with breast cancer. Materials and Methods: Semi-structured in-depth interviews are used with purposeful sampling conducted in Tehran, Iran; from January to June 2015. Twenty participants were included in the study: nine patients with breast cancer and ten health-care providers. The interviews were analyzed using qualitative directed content analysis based on Donabedian model. Data credibility was examined using the criteria of Lincoln and Guba. Results: Based on the pattern of Avedis Donabedian model, two main categories were identified: (1) palliative care services in the health system still remain undefined and (2) lack of adequate care providers. The subcategories emerged from the main categories are: (1) Inexistent home care, (2) specialized palliative care being in high demand, lack of: (a) Rehabilitation program and guidelines, (b) treatment/training protocols, (c) inefficient insurance and out-of-pocket costs, (d) patient referral system, (e) nontransparency of job description, and (f) weakness of teamwork. Discussion: The findings of the study identify views and perceptions of patients as well as the health professionals around the challenges of providing palliative care. To establish a structured PCS, we need to meet the challenges and remove perceived barriers to, including but not limited to, building up knowledge and awareness of health professionals, educating professional, and developing updated, well-defined, and standard treatment protocols, tailored to local conditions. PMID:27803569

Using a supportive care framework to understand and improve palliative care among cancer patients in Africa.

PubMed

Busolo, David S; Woodgate, Roberta L

2016-06-01

Cancer incidence and mortality are increasing in Africa, which is leading to greater demands for palliative care. There has been little progress in terms of research, pain management, and policies related to palliative care. Palliative care in Africa is scarce and scattered, with most African nations lacking the basic services. To address these needs, a guiding framework that identifies care needs and directs palliative care services could be utilized. Therefore, using the supportive care framework developed by Fitch (Fitch, 2009), we here review the literature on palliative care for patients diagnosed with cancer in Africa and make recommendations for improvement. The PubMed, Scopus, CINAHL, Web of Science, Embase, PsycINFO, Social Sciences Citation Index, and Medline databases were searched. Some 25 English articles on research from African countries published between 2004 and 2014 were selected and reviewed. The reviewed literature was analyzed and presented using the domains of the supportive care framework. Palliative care patients with cancer in Africa, their families, and caregivers experience increasing psychological, physical, social, spiritual, emotional, informational, and practical needs. Care needs are often inadequately addressed because of a lack of awareness as well as deficient and scattered palliative care services and resources. In addition, there is sparse research, education, and policies that address the dire situation in palliative care. Our review findings add to the existing body of knowledge demonstrating that palliative care patients with cancer in Africa experience disturbing care needs in all domains of the supportive care framework. To better assess and address these needs, holistic palliative care that is multidomain and multi-professional could be utilized. This approach needs to be individualized and to offer better access to services and information. In addition, research, education, and policies around palliative care for cancer

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.

Palliative medicine consultation for preparedness planning in patients receiving left ventricular assist devices as destination therapy.

PubMed

Swetz, Keith M; Freeman, Monica R; AbouEzzeddine, Omar F; Carter, Kari A; Boilson, Barry A; Ottenberg, Abigale L; Park, Soon J; Mueller, Paul S

2011-06-01

To assess the benefit of proactive palliative medicine consultation for delineation of goals of care and quality-of-life preferences before implantation of left ventricular assist devices as destination therapy (DT). We retrospectively reviewed the cases of patients who received DT between January 15, 2009, and January 1, 2010. Of 19 patients identified, 13 (68%) received proactive palliative medicine consultation. Median time of palliative medicine consultation was 1 day before DT implantation (range, 5 days before to 16 days after). Thirteen patients (68%) completed advance directives. The DT implantation team and families reported that preimplantation discussions and goals of care planning made postoperative care more clear and that adverse events were handled more effectively. Currently, palliative medicine involvement in patients receiving DT is viewed as routine by cardiac care specialists. Proactive palliative medicine consultation for patients being considered for or being treated with DT improves advance care planning and thus contributes to better overall care of these patients. Our experience highlights focused advance care planning, thorough exploration of goals of care, and expert symptom management and end-of-life care when appropriate.

Physician Reimbursement for Critical Care Services Integrating Palliative Care for Patients Who Are Critically Ill

PubMed Central

Nelson, Judith E.; Weissman, David E.; Hays, Ross M.; Mosenthal, Anne C.; Mulkerin, Colleen; Puntillo, Kathleen A.; Ray, Daniel E.; Bassett, Rick; Boss, Renee D.; Brasel, Karen J.; Campbell, Margaret L.; Cortez, Therese B.; Curtis, J. Randall

2012-01-01

Patients with advanced illness often spend time in an ICU, while nearly one-third of patients with advanced cancer who receive Medicare die in hospitals, often with failed ICU care. For most, death occurs following the withdrawal or withholding of life-sustaining treatments. The integration of palliative care is essential for high-quality critical care. Although palliative care specialists are becoming increasingly available, intensivists and other physicians are also expected to provide basic palliative care, including symptom treatment and communication about goals of care. Patients who are critically ill are often unable to make decisions about their care. In these situations, physicians must meet with family members or other surrogates to determine appropriate medical treatments. These meetings require clinical expertise to ensure that patient values are explored for medical decision making about therapeutic options, including palliative care. Meetings with families take time. Issues related to the disease process, prognosis, and treatment plan are complex, and decisions about the use or limitation of intensive care therapies have life-or-death implications. Inadequate reimbursement for physician services may be a barrier to the optimal delivery of high-quality palliative care, including effective communication. Appropriate documentation of time spent integrating palliative and critical care for patients who are critically ill can be consistent with the Current Procedural Terminology codes (99291 and 99292) for critical care services. The purpose of this article is to help intensivists and other providers understand the circumstances in which integration of palliative and critical care meets the definition of critical care services for billing purposes. PMID:22396564

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

A Pilot Trial of Early Specialty Palliative Care for Patients with Advanced Pancreatic Cancer: Challenges Encountered and Lessons Learned.

PubMed

Schenker, Yael; Bahary, Nathan; Claxton, Rene; Childers, Julie; Chu, Edward; Kavalieratos, Dio; King, Linda; Lembersky, Barry; Tiver, Greer; Arnold, Robert M

2018-01-01

Patients with advanced pancreatic cancer suffer from high morbidity and mortality. Specialty palliative care may improve quality of life. Assess the feasibility, acceptability, and perceived effectiveness of early specialty physician-led palliative care for patients with advanced pancreatic cancer and their caregivers. A mixed-methods pilot randomized controlled trial in which patient-caregiver pairs were randomized (2:1) to receive specialty palliative care, in addition to standard oncology care versus standard oncology care alone. At a National Cancer Institute-designated comprehensive cancer center in Western Pennsylvania, 30 patients with advanced pancreatic adenocarcinoma and their caregivers (N = 30), oncologists (N = 4), and palliative care physicians (N = 3) participated. Feasibility (enrollment, three-month outcome-assessment, and intervention completion rates), acceptability, and perceived effectiveness (process interviews with patients, caregivers, and physicians). Consent:approach rate was 49%, randomized:consent rate 55%, and three-month outcome assessment rate 75%. Two patients and three caregivers withdrew early. The three-month mortality rate was 13%. Patients attended a mean of 1.3 (standard deviation 1.1) palliative care visits during the three-month period. Positive experiences with palliative care included receiving emotional support and symptom management. Negative experiences included inconvenience, long travel times, spending too much time at the cancer center, and no perceived palliative care needs. Physicians suggested embedding palliative care within oncology clinics, tailoring services to patient needs, and facilitating face-to-face communication between oncologists and palliative physicians. A randomized trial of early palliative care for advanced pancreatic cancer did not achieve feasibility goals. Integrating palliative care within oncology clinics may increase acceptability and perceived effectiveness.

A Palliative Approach to Dialysis Care: A Patient-Centered Transition to the End of Life

PubMed Central

Moss, Alvin H.; Cohen, Lewis M.; Fischer, Michael J.; Germain, Michael J.; Jassal, S. Vanita; Perl, Jeffrey; Weiner, Daniel E.; Mehrotra, Rajnish

2014-01-01

As the importance of providing patient-centered palliative care for patients with advanced illnesses gains attention, standard dialysis delivery may be inconsistent with the goals of care for many patients with ESRD. Many dialysis patients with life expectancy of <1 year may desire a palliative approach to dialysis care, which focuses on aligning patient treatment with patients’ informed preferences. This commentary elucidates what comprises a palliative approach to dialysis care and describes its potential and appropriate use. It also reviews the barriers to integrating such an approach into the current clinical paradigm of care and existing infrastructure and outlines system-level changes needed to accommodate such an approach. PMID:25104274

Patients in palliative care-Development of a predictive model for anxiety using routine data.

PubMed

Hofmann, Sonja; Hess, Stephanie; Klein, Carsten; Lindena, Gabriele; Radbruch, Lukas; Ostgathe, Christoph

2017-01-01

Anxiety is one of the most common psychological symptoms in patients in a palliative care situation. This study aims to develop a predictive model for anxiety using data from the standard documentation routine. Data sets of palliative care patients collected by the German quality management benchmarking system called Hospice and Palliative Care Evaluation (HOPE) from 2007 to 2011 were randomly divided into a training set containing two-thirds of the data and a test set with the remaining one-third. We dichotomized anxiety levels, proxy rated by medical staff using the validated HOPE Symptom and Problem Checklist, into two groups with no or mild anxiety versus moderate or severe anxiety. Using the training set, a multivariable logistic regression model was developed by backward stepwise selection. Predictive accuracy was evaluated by the area under the receiver operating characteristic curve (AUC) based on the test set. An analysis of 9924 data sets suggests a predictive model for anxiety in patients receiving palliative care which contains gender, age, ECOG, living situation, pain, nausea, dyspnea, loss of appetite, tiredness, need for assistance with activities of daily living, problems with organization of care, medication with sedatives/anxiolytics, antidepressants, antihypertensive drugs, laxatives, and antibiotics. It results in a fair predictive value (AUC = 0.72). Routinely collected data providing individual-, disease- and therapy-related information contain valuable information that is useful for the prediction of anxiety risks in patients receiving palliative care. These findings could thus be advantageous for providing appropriate support for patients in palliative care settings and should receive special attention in future research.

Spiritual Concerns in Hindu Cancer Patients Undergoing Palliative Care: A Qualitative Study

PubMed Central

Simha, Srinagesh; Noble, Simon; Chaturvedi, Santosh K

2013-01-01

Aims: Spiritual concerns are being identified as important components of palliative care. The aim of this study was to explore the nature of spiritual concerns in cancer patients undergoing palliative care in a hospice in India. Materials and Methods: The methodology used was a qualitative method: Interpretive phenomenological analysis. A semi-structured interview guide was used to collect data, based on Indian and western literature reports. Certain aspects like karma and pooja, relevant to Hindus, were included. Theme saturation was achieved on interviewing 10 participants. Results: The seven most common spiritual concerns reported were benefit of pooja, faith in God, concern about the future, concept of rebirth, acceptance of one's situation, belief in karma, and the question Why me? No participant expressed four of the concerns studied: Loneliness, need of seeking forgiveness from others, not being remembered later, and religious struggle. Conclusions: This study confirms that there are spiritual concerns reported by patients receiving palliative care. The qualitative descriptions give a good idea about these experiences, and how patients deal with them. The study indicates the need for adequate attention to spiritual aspects during palliative care. PMID:24049350

Palliative care and end-of-life care for polypathological patients.

PubMed

Martinez-Litago, E; Martínez-Velasco, M C; Muniesa-Zaragozano, M P

2017-12-01

Patients with advanced chronic diseases receive fragmented care, which entails high resource consumption and a poor quality of life. Uncertainty in the prognosis and scarce investigation into the importance of symptomatic control in this patient group hinders a proper therapeutic approach. Palliative care teams optimise the use of resources through comprehensive patient care, the optimization of the patient's environment, communication, the preparation of early care plans and the creation of coordinated healthcare circuits, which improve the quality of the patient's care in advanced stages of the disease. In the end-of-life phase, the therapeutic approach is focused on symptomatic control, selecting treatments according to the cause, comorbidities and the patient's wishes. To control refractory symptoms, palliative sedation is considered an indispensable option. Copyright © 2017 Elsevier España, S.L.U. and Sociedad Española de Medicina Interna (SEMI). All rights reserved.

Palliative care for patients with HIV/AIDS admitted to intensive care units

PubMed Central

Souza, Paola Nóbrega; de Miranda, Erique José Peixoto; Cruz, Ronaldo; Forte, Daniel Neves

2016-01-01

Objective To describe the characteristics of patients with HIV/AIDS and to compare the therapeutic interventions and end-of-life care before and after evaluation by the palliative care team. Methods This retrospective cohort study included all patients with HIV/AIDS admitted to the intensive care unit of the Instituto de Infectologia Emílio Ribas who were evaluated by a palliative care team between January 2006 and December 2012. Results Of the 109 patients evaluated, 89% acquired opportunistic infections, 70% had CD4 counts lower than 100 cells/mm3, and only 19% adhered to treatment. The overall mortality rate was 88%. Among patients predicted with a terminally ill (68%), the use of highly active antiretroviral therapy decreased from 50.0% to 23.1% (p = 0.02), the use of antibiotics decreased from 100% to 63.6% (p < 0.001), the use of vasoactive drugs decreased from 62.1% to 37.8% (p = 0.009), the use of renal replacement therapy decreased from 34.8% to 23.0% (p < 0.0001), and the number of blood product transfusions decreased from 74.2% to 19.7% (p < 0.0001). Meetings with the family were held in 48 cases, and 23% of the terminally ill patients were discharged from the intensive care unit. Conclusion Palliative care was required in patients with severe illnesses and high mortality. The number of potentially inappropriate interventions in terminally ill patients monitored by the palliative care team significantly decreased, and 26% of the patients were discharged from the intensive care unit. PMID:27737420

A palliative approach to dialysis care: a patient-centered transition to the end of life.

PubMed

Grubbs, Vanessa; Moss, Alvin H; Cohen, Lewis M; Fischer, Michael J; Germain, Michael J; Jassal, S Vanita; Perl, Jeffrey; Weiner, Daniel E; Mehrotra, Rajnish

2014-12-05

As the importance of providing patient-centered palliative care for patients with advanced illnesses gains attention, standard dialysis delivery may be inconsistent with the goals of care for many patients with ESRD. Many dialysis patients with life expectancy of <1 year may desire a palliative approach to dialysis care, which focuses on aligning patient treatment with patients' informed preferences. This commentary elucidates what comprises a palliative approach to dialysis care and describes its potential and appropriate use. It also reviews the barriers to integrating such an approach into the current clinical paradigm of care and existing infrastructure and outlines system-level changes needed to accommodate such an approach. Copyright © 2014 by the American Society of Nephrology.

Lifestyle changes in cancer patients undergoing curative or palliative chemotherapy: is it feasible?

PubMed

Vassbakk-Brovold, Karianne; Berntsen, Sveinung; Fegran, Liv; Lian, Henrik; Mjåland, Odd; Mjåland, Svein; Nordin, Karin; Seiler, Stephen; Kersten, Christian

2017-12-14

This study aimed to explore the feasibility of an individualized comprehensive lifestyle intervention in cancer patients undergoing curative or palliative chemotherapy. At one cancer center, serving a population of 180,000, 100 consecutive of 161 eligible newly diagnosed cancer patients starting curative or palliative chemotherapy entered a 12-month comprehensive, individualized lifestyle intervention. Participants received a grouped startup course and monthly counseling, based on self-reported and electronically evaluated lifestyle behaviors. Patients with completed baseline and end of study measurements are included in the final analyses. Patients who did not complete end of study measurements are defined as dropouts. More completers (n = 61) vs. dropouts (n = 39) were married or living together (87 vs. 69%, p = .031), and significantly higher baseline physical activity levels (960 vs. 489 min . wk -1 , p = .010), more healthy dietary choices (14 vs 11 points, p = .038) and fewer smokers (8 vs. 23%, p = .036) were observed among completers vs. dropouts. Logistic regression revealed younger (odds ratios (OR): 0.95, 95% confidence interval (CI): 0.91, 0.99) and more patients diagnosed with breast cancer vs. more severe cancer types (OR: 0.16, 95% CI: 0.04, 0.56) among completers vs. dropouts. Improvements were observed in completers healthy (37%, p < 0.001) and unhealthy dietary habits (23%, p = .002), and distress (94%, p < .001). No significant reductions were observed in physical activity levels. Patients treated with palliative intent did not reduce their physical activity levels while healthy dietary habits (38%, p = 0.021) and distress (104%, p = 0.012) was improved. Favorable and possibly clinical relevant lifestyle changes were observed in cancer patients undergoing curative or palliative chemotherapy after a 12-month comprehensive and individualized lifestyle intervention. Palliative patients were able to

Palliative sedation in nursing anesthesia.

PubMed

Wolf, Michael T

2013-04-01

Palliative sedation is a technique of providing a sedative for end-of-life care to patients with intractable pain. The literature discusses the techniques and use of palliative sedation. Numerous articles have been written regarding the issues surrounding its use, but no literature has discussed the prescription or administration of palliative sedation by a nurse anesthetist. By understanding the concept and ethics involved in its use and providing nursing care that is theory based, the author argues that the involvement of nursing anesthesia is appropriate and within the scope of practice. Few other healthcare disciplines can provide the patient care and empirical knowledge that is imperative in the care of the dying patient. This article discusses the concept and ethics of palliative sedation and presents a case of providing palliative sedation to a terminally ill patient by an experienced nurse anesthetist. Palliative sedation should be understood, embraced, and utilized as an area of expertise suited for nursing anesthesia.

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.

Innovative Urgent Care for the Palliative Patient at Home.

PubMed

Montgomery, Carmel L; Pooler, Charlotte; Arsenault, Julia E; Berean, Colleen; Sharman, Robert; Cameron, Cheryl L; de Kock, Ingrid

2017-04-01

Palliative and end-of-life patients in their homes are at risk of developing symptom crises requiring urgent care. The usual care for these patients involves transport to an Emergency Department (ED) despite the preference of most palliative patients to stay home. The objective of this initiative was to develop an innovative strategy to provide collaborative care in the home to alleviate symptoms and avoid transport. A partnership was created among Emergency Medical Services and Community Care staff, physicians, and leaders to enable patients to stay at home with existing resources during symptom crisis. As a result of the initiative, patients were able to stay at home more frequently. When patients required transport to the ED, it occurred after attempted symptom management in the home. A total of 110 calls were tracked in the first 18 months of the initiative. Of those, 61% ended with the patient staying home, in alignment with their preferred place of care at the end of life. A collaborative approach by care providers in the community enabled patients to stay home despite symptom crisis near the end of life.

Top 10 things palliative care clinicians wished everyone knew about palliative care.

PubMed

Strand, Jacob J; Kamdar, Mihir M; Carey, Elise C

2013-08-01

With a focus on improving quality of life for patients, palliative care is a rapidly growing medical subspecialty focusing on the care of patients with serious illness. Basic symptom management, discussions of prognostic understanding, and eliciting treatment goals are essential pieces in the practice of nearly all physicians. Nonetheless, many complex patients with a serious, life-threatening illness benefit from consultation with palliative care specialists, who are trained and experienced in complex symptom management and challenging communication interactions, including medical decision making and aligning goals of care. This article discusses the changing role of modern palliative care, addresses common misconceptions, and presents an argument for early integration of palliative care in the treatment of patients dealing with serious illness. Copyright © 2013 Mayo Foundation for Medical Education and Research. Published by Elsevier Inc. All rights reserved.

[Palliative sedation].

PubMed

Verhagen, E H; Hesselmann, G M; Besse, T C; de Graeff, A

2005-02-26

Palliative sedation is the intentional lowering of the level of consciousness ofa patient in the last phase of life by means of the administration of sedatives. The objective of palliative sedation is to relieve severe physical or psychological suffering that is otherwise untreatable. Sedation is used in 12% of all patients dying in the Netherlands. Refractory delirium, dyspnoea or pain are the most common indications. If deep palliative sedation is used, the estimated life expectancy should be a few days to at most one week. Midazolam is used most often for continuous sedation, usually by subcutaneous infusion; if the response is insufficient, a combination of midazolam with levomepromazine or phenobarbital or monotreatment with propofol may be used. If continuous infusion is not desired or feasible, intermittent administration of midazolam, diazepam, lorazepam or chlorpromazine may be considered. Provided that it is used under the right circumstances, palliative sedation does not shorten life.

Palliative care consultations for heart failure patients: how many, when, and why?

PubMed

Bakitas, Marie; Macmartin, Meredith; Trzepkowski, Kenneth; Robert, Alina; Jackson, Lisa; Brown, Jeremiah R; Dionne-Odom, James N; Kono, Alan

2013-03-01

In preparation for development of a palliative care intervention for patients with heart failure (HF) and their caregivers, we aimed to characterize the HF population receiving palliative care consultations (PCCs). Reviewing charts from January 2006 to April 2011, we analyzed HF patient data including demographic and clinical characteristics, Seattle Heart Failure scores, and PCCs. Using Atlas qualitative software, we conducted a content analysis of PCC notes to characterize palliative care assessment and treatment recommendations. There were 132 HF patients with PCCs, of which 37% were New York Heart Association functional class III and 50% functional class IV. Retrospectively computed Seattle Heart Failure scores predicted 1-year mortality of 29% [interquartile range (IQR) 19-45] and median life expectancy of 2.8 years [IQR 1.6-4.2] years. Of the 132 HF patients, 115 (87%) had died by the time of the audit. In that cohort the actual median time from PCC to death was 21 [IQR 3-125] days. Reasons documented for PCCs included goals of care (80%), decision making (24%), hospice referral/discussion (24%), and symptom management (8%). Despite recommendations, PCCs are not being initiated until the last month of life. Earlier referral for PCC may allow for integration of a broader array of palliative care services. Copyright © 2013 Elsevier Inc. All rights reserved.

Effectiveness of palliative home-care services in reducing hospital admissions and determinants of hospitalization for terminally ill patients followed up by a palliative home-care team: a retrospective cohort study.

PubMed

Riolfi, Mirko; Buja, Alessandra; Zanardo, Chiara; Marangon, Chiara Francesca; Manno, Pietro; Baldo, Vincenzo

2014-05-01

It has been demonstrated that most patients in the terminal stages of cancer would benefit from palliative home-care services. The aim of this study was to assess the effectiveness of appropriate palliative home-care services in reducing hospital admissions, and to identify factors predicting the likelihood of patients treated at home being hospitalized. Retrospective cohort study. We enrolled all 402 patients listed by the Local Health Authority No. 5, Veneto Region (North-East Italy), as dying of cancer in 2011. Of the cohort considered, 39.9% patients had been taken into care by a palliative home-care team. Irrespective of age, gender, and type of tumor, patients taken into care by the palliative home-care team were more likely to die at home, less likely to be hospitalized, and spent fewer days in hospital in the last 2 months of their life. Among the patients taken into care by the palliative home-care team, those with hematological cancers and hepatocellular carcinoma were more likely to be hospitalized, and certain symptoms (such as dyspnea and delirium) were predictive of hospitalization. Our study confirms the effectiveness of palliative home care in enabling patients to spend the final period of their lives at home. The services of a palliative home-care team reduced the consumption of hospital resources. This study also provided evidence of some types of cancer (e.g. hematological cancers and hepatocellular carcinoma) being more likely to require hospitalization, suggesting the need to reconsider the pathways of care for these diseases.

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

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.

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.

The contribution of undergraduate palliative care education: does it influence the clinical patient's care?

PubMed

Centeno, Carlos; Rodríguez-Núñez, Alfredo

2015-12-01

The aim of this 2-year systematic review is to understand how learner assessment and curriculum evaluation of education in palliative care is being undertaken and to examine whether current undergraduate education influences the clinical patient's care. Almost half of the 30 studies reviewed used a qualitative approach to evaluate learning experiences. Only three of them were controlled studies and a further one was a cohort study.When students openly express themselves, they agree that there is 'something' deep as regards the core or the essence of medical practice or nursing. They feel that they become better professionals and better prepared for the patients, not only in terms of end of life care, but also as regards care, irrespective of the phase of the disease.The inclusion of palliative care in undergraduate education is a way of providing knowledge, skill, and competences about palliative care (especially communication) and also improving attitudes toward caring in advanced disease and at the end of life. Different methods of experiential learning, even brief experiences, which bring students into close contact with palliative care clinical cases or patients, are providing better results. From research studies, there is only indirect evidence that palliative care training at university leads to better clinical care of patients. In the future, long-term cohort or controlled studies might answer that question.

[Satisfaction of principal caregivers of patients followed-up by palliative care teams].

PubMed

Fernández-Isla, L E; Conde-Valvis-Fraga, S; Fernández-Ruíz, J S

2016-10-01

To determine the satisfaction of main caregivers of deceased patients followed-up by palliative care teams. Web research on electronic data bases: PubMed and MEDES, using "Palliative Care" and "Patient Satisfaction" as main descriptors, and "Family", "Professional-Family Relations", "Quality of Health Care" and "Quality Assurance, Health Care" as secondary descriptors. Studies written in Spanish and English were included. Profile of principal caregiver: a woman between her mid-forties and her mid-fifties, usually related with the patient as a daughter, and of primary educational level. The items that the main caregivers valued the most were: a kind manner, feeling free to ask questions about problems during the process, tactful explanations, receiving information, pain management, time for answering questions, interest for emotional problems, and information about treatment. The worse valued items were: symptoms control, lack of psychological support after death, preparation for a death of a relative, keeping in touch after death, help to resolve outstanding issues, and help during grief. In general, a great majority of palliative care teams achieved excellent results. In spite of the good results obtained in satisfaction surveys from caregivers with regard to palliative care teams, it is essential to improve the quality of scientific-technical training (both from the medical and the psychological point of view), as well as to improve communicational skills among palliative care staff. Copyright © 2016 Sociedad Española de Médicos de Atención Primaria (SEMERGEN). Publicado por Elsevier España, S.L.U. All rights reserved.

Surgical and Palliative Management and Outcome in 184 Patients With Hilar Cholangiocarcinoma

PubMed Central

Witzigmann, Helmut; Berr, Frieder; Ringel, Ulrike; Caca, Karel; Uhlmann, Dirk; Schoppmeyer, Konrad; Tannapfel, Andrea; Wittekind, Christian; Mossner, Joachim; Hauss, Johann; Wiedmann, Marcus

2006-01-01

Objective: First, to analyze the strategy for 184 patients with hilar cholangiocarcinoma seen and treated at a single interdisciplinary hepatobiliary center during a 10-year period. Second, to compare long-term outcome in patients undergoing surgical or palliative treatment, and third to evaluate the role of photodynamic therapy in this concept. Summary Background Data: Tumor resection is attainable in a minority of patients (<30%). When resection is not possible, radiotherapy and/or chemotherapy have been found to be an ineffective palliative option. Recently, photodynamic therapy (PDT) has been evaluated as a palliative and neoadjuvant modality. Methods: Treatment and outcome data of 184 patients with hilar cholangiocarcinoma were analyzed prospectively between 1994 and 2004. Sixty patients underwent resection (8 after neoadjuvant PDT); 68 had PDT in addition to stenting and 56 had stenting alone. Results: The 30-day death rate after resection was 8.3%. Major complications occurred in 52%. The overall 1-, 3-, and 5-year survival rates were 69%, 30%, and 22%, respectively. R0, R1, and R2 resection resulted in 5-year survival rates of 27%, 10%, and 0%, respectively. Multivariate analysis identified R0 resection (P < 0.01), grading (P < 0.05), and on the limit to significance venous invasion (P = 0.06) as independent prognostic factors for survival. PDT and stenting resulted in longer median survival (12 vs. 6.4 months, P < 0.01), lower serum bilirubin levels (P < 0.05), and higher Karnofsky performance status (P < 0.01) as compared with stenting alone. Median survival after PDT and stenting, but not after stenting alone, did not differ from that after both R1 and R2 resection. Conclusion: Only complete tumor resection, including hepatic resection, enables long-term survival for patients with hilar cholangiocarcinoma. Palliative PDT and subsequent stenting resulted in longer survival than stenting alone and has a similar survival time compared with incomplete R1 and

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.

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

An integrated approach to patient-specific predictive modeling for single ventricle heart palliation.

PubMed

Corsini, Chiara; Baker, Catriona; Kung, Ethan; Schievano, Silvia; Arbia, Gregory; Baretta, Alessia; Biglino, Giovanni; Migliavacca, Francesco; Dubini, Gabriele; Pennati, Giancarlo; Marsden, Alison; Vignon-Clementel, Irene; Taylor, Andrew; Hsia, Tain-Yen; Dorfman, Adam

2014-01-01

In patients with congenital heart disease and a single ventricle (SV), ventricular support of the circulation is inadequate, and staged palliative surgery (usually 3 stages) is needed for treatment. In the various palliative surgical stages individual differences in the circulation are important and patient-specific surgical planning is ideal. In this study, an integrated approach between clinicians and engineers has been developed, based on patient-specific multi-scale models, and is here applied to predict stage 2 surgical outcomes. This approach involves four distinct steps: (1) collection of pre-operative clinical data from a patient presenting for SV palliation, (2) construction of the pre-operative model, (3) creation of feasible virtual surgical options which couple a three-dimensional model of the surgical anatomy with a lumped parameter model (LPM) of the remainder of the circulation and (4) performance of post-operative simulations to aid clinical decision making. The pre-operative model is described, agreeing well with clinical flow tracings and mean pressures. Two surgical options (bi-directional Glenn and hemi-Fontan operations) are virtually performed and coupled to the pre-operative LPM, with the hemodynamics of both options reported. Results are validated against postoperative clinical data. Ultimately, this work represents the first patient-specific predictive modeling of stage 2 palliation using virtual surgery and closed-loop multi-scale modeling.

Extending specialist palliative care to all?

PubMed

Field, D; Addington-Hall, J

1999-05-01

How to extend palliative care services to all patients needing them is an issue currently exercising a range of bodies in contemporary Britain. This paper first considers the evidence regarding the needs of dying patients with long term conditions other than cancer and concludes that there is evidence to support their presumed need for palliative care. It then considers five potential barriers to extending specialist palliative care services to non-cancer patients in Britain. These are the skill base of current specialists in palliative care, difficulties in identifying candidates for specialist palliative care, the views of potential users of these services, resource implications and vested interests in present health service arrangements.

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.

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.

Palliative Care in Iran: Moving Toward the Development of Palliative Care for Cancer.

PubMed

Rassouli, Maryam; Sajjadi, Moosa

2016-04-01

Cancer is the third leading cause of death in Iran and its incidence has been increasing in recent years. Patients' quality of life is altered rather enormously due to cancer, which doubles the importance of and the need for providing palliative care in Iran. Although many steps have been taken toward the development and providing of palliative care in Iran, there is still a large gap between the status quo and the desirable state. This study presents the current state of palliative care for cancer patients and discusses the barriers, challenges and outlook of palliative care in Iran. If infrastructural projects that have recently been launched prove successful, proper advancement toward the providing of palliative care services in Iran will then not far on the horizon. © The Author(s) 2014.

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).

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

[The impact of patient identification on an integrated program of palliative care in Basque Country].

PubMed

Larrañaga, Igor; Millas, Jesús; Soto-Gordoa, Myriam; Arrospide, Arantzazu; San Vicente, Ricardo; Irizar, Marisa; Lanzeta, Itziar; Mar, Javier

2017-12-05

Evaluate the process and the economic impact of an integrated palliative care program. Comparative cross-sectional study. Integrated Healthcare Organizations of Alto Deba and Goierri Alto-Urola, Basque Country. Patients dead due to oncologic and non-oncologic causes in 2012 (control group) and 2015 (intervention group) liable to need palliative care according to McNamara criteria. Identification as palliative patients in primary care, use of common clinical pathways in primary and secondary care and arrange training courses for health professionals. Change in the resource use profile of patients in their last 3 months. Propensity score by genetic matching method was used to avoid non-randomization bias. The groups were compared by univariate analysis and the relationships between variables were analysed by logistic regressions and generalized linear models. One thousand and twenty-three patients were identified in 2012 and 1,142 patients in 2015. In 2015 doubled the probability of being identify as palliative patient in deaths due to oncologic (19-33%) and non-oncologic causes (7-16%). Prescriptions of opiates rise (25-68%) and deaths in hospital remained stable. Contacts per patient with primary care and home hospitalization increased, while contacts with hospital admissions decreased. Cost per patient rise 26%. The integrated palliative care model increased the identification of the target population. Relationships between variables showed that the identification had a positive impact on prescription of opiates, death outside the hospital and extension to non-oncologic diseases. Although the identification decreased admissions in hospital, costs per patient had a slight increase due to home hospitalizations. Copyright © 2017 Elsevier España, S.L.U. All rights reserved.

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 ...

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

Association between palliative care and life-sustaining treatments for patients with dementia: A nationwide 5-year cohort study.

PubMed

Chen, Ping-Jen; Liang, Fu-Wen; Ho, Chung-Han; Cheng, Shao-Yi; Chen, Yi-Chen; Chen, Yu-Han; Chen, Yueh-Chun

2018-03-01

The association between palliative care and life-sustaining treatments for patients with dementia is unclear in Asian countries. To analyse the use of palliative care and its association with aggressive treatments based on Taiwanese national data. A matched cohort study was conducted. The association between intervention and outcome was evaluated using conditional logistic regression analyses. The source population comprised 239,633 patients with dementia diagnosed between 2002 and 2013. We selected patients who received palliative care between 2009 and 2013 (the treatment cohort; N = 1996) and assembled a comparative cohort ( N = 3992) through 1:2 matching for confounding factors. After 2009, palliative care was provided to 3928 (1.64%) patients of the dementia population. The odds ratio for undergoing life-sustaining treatments in the treatment cohort versus the comparative cohort was <1 for most treatments (e.g. 0.41 for mechanical ventilation (95% confidence interval: 0.35-0.48)). The odds ratio was >1 for some treatments (e.g. 1.73 for tube feeding (95% confidence interval: 1.54-1.95)). Palliative care was more consistently associated with fewer life-sustaining treatments for those with cancer. Palliative care is related to reduced life-sustaining treatments for patients with dementia. However, except in the case of tube feeding, which tended to be provided alongside palliative care regardless of cancer status, having cancer possibly had itself a protective effect against the use of life-sustaining treatments. Modifying the eligibility criteria for palliative care in dementia, improving awareness on the terminal nature of dementia and facilitating advance planning for dementia patients may be priorities for health policies.

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.

Initial perceptions of palliative care: An exploratory qualitative study of patients with advanced cancer and their family caregivers.

PubMed

Collins, Anna; McLachlan, Sue-Anne; Philip, Jennifer

2017-10-01

Despite evidence for early integration of palliative care for people with advanced cancer and their families, patterns of late engagement continue. Prior research has focused on health professionals' attitudes to palliative care with few studies exploring the views of patients and their carers. To explore initial perceptions of palliative care when this is first raised with patients with advanced cancer and their families in Australian settings. Cross-sectional, prospective, exploratory qualitative design, involving narrative-style interviews and underpinned by an interpretative phenomenological framework. Purposively sampled, English-speaking, adult patients with advanced cancer ( n = 30) and their nominated family caregivers ( n = 25) recruited from cancer services at a tertiary metropolitan hospital in Melbourne, Victoria, Australia. Three major themes evolved which represent the common initial perceptions of palliative care held by patients with advanced cancer and their carers when this concept is first raised: (1) diminished care, (2) diminished possibility and (3) diminished choice. Palliative care was negatively associated with a system of diminished care which is seen as a 'lesser' treatment alternative, diminished possibilities for hope and achievement of ambitions previously centred upon cure and diminished choices for the circumstances of one's care given all other options have expired. While there is an increasing move towards early integration of palliative care, this study suggests that patient and caregiver understandings have not equally progressed. A targeted public health campaign is warranted to disentangle understandings of palliative care as the 'institutional death' and to reframe community rhetoric surrounding palliative care from that of disempowered dying to messages of choice, accomplishment and possibility.

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

Constipation in Specialized Palliative Care: Prevalence, Definition, and Patient-Perceived Symptom Distress.

PubMed

Erichsén, Eva; Milberg, Anna; Jaarsma, Tiny; Friedrichsen, Maria J

2015-07-01

The prevalence of constipation among patients in palliative care has varied in prior research, from 18% to 90%, depending on study factors. The aim of this study was to describe and explore the prevalence and symptom distress of constipation, using different definitions of constipation, in patients admitted to specialized palliative care settings. Data was collected in a cross-sectional survey from 485 patients in 38 palliative care units in Sweden. Variables were analyzed using logistic regression and summarized as odds ratio (OR). The prevalence of constipation varied between 7% and 43%, depending on the definition used. Two constipation groups were found: (1) medical constipation group (MCG): ≤3 defecations/week, n=114 (23%) and (2) perceived constipation group (PCG): patients with a perception of being constipated in the last two weeks, n=171 (35%). Three subgroups emerged: patients with (1) only medical constipation (7%), (2) only perceived constipation (19%), and (3) both medical and perceived constipation (16%). There were no differences in symptom severity between groups; 71% of all constipated patients had severe constipation. The prevalence of constipation may differ, depending on the definition used and how constipation is assessed. In this study we found two main groups and three subgroups, analyzed from the definitions of frequency of bowel movements and experience of being constipated. To be able to identify constipation, the patients' definition has to be further explored and assessed.

Implementation of HIV Palliative Care: Interprofessional Education to Improve Patient Outcomes in Resource-Constrained Settings, 2004-2012.

PubMed

Alexander, Carla S; Pappas, Gregory; Amoroso, Anthony; Lee, Mei Ching; Brown-Henley, Yvonne; Memiah, Peter; O'Neill, Joseph F; Dix, Olivia; Redfield, Robert R

2015-09-01

Palliative care (PC), introduced early in the management of chronic illness, improves patient outcomes. Early integration of a palliative approach for persons with HIV has been documented to be effective in identifying and managing patient-level concerns over the past decade in African settings. The experience of implementing PC in multiple African and other resource-constrained settings (RCSs) emphasizes the need for essential palliative competencies that can be integrated with chronic disease management for patients and their families facing life-limiting illness. This article is an historical description of how basic palliative competencies were observed to be acceptable for health workers providing outpatient HIV care and treatment during eight years of U.S. implementation of "care and support," a term coined to represent PC for persons living with HIV in RCS. The need for team building and interprofessional education is highlighted. The model is currently being tested in one U.S. city and may represent a mechanism for expanding the palliative approach into management of chronic disease. Such competencies may play a role in the development of the patient-centered medical home, a critical component of U.S. health care reform. Copyright © 2015 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.

Care of the Critically Ill Burn Patient. An Overview from the Perspective of Optimizing Palliative Care.

PubMed

Ray, Daniel E; Karlekar, Mohana B; Crouse, Donnelle L; Campbell, Margaret; Curtis, J Randall; Edwards, Jeffrey; Frontera, Jennifer; Lustbader, Dana R; Mosenthal, Anne C; Mulkerin, Colleen; Puntillo, Kathleen A; Weissman, David E; Boss, Renee D; Brasel, Karen J; Nelson, Judith E

2017-07-01

Burn specialists have long recognized the need for and have role modeled a comprehensive approach incorporating relief of distress as part of care during critical illness. More recently, palliative care specialists have become part of the healthcare team in many U.S. hospitals, especially larger academic institutions that are more likely to have designated burn centers. No current literature describes the intersection of palliative care and burn care or integration of primary and specialist palliative care in this unique context. This Perspective gives an overview of burn care; focuses on pain and other symptoms in burn intensive care unit settings; addresses special needs of critically ill burned patients, their families, and clinicians for high-quality palliative care; and highlights potential benefits of integrating primary and specialist palliative care in burn critical care. MEDLINE and the Cumulative Index to Nursing and Allied Health Literature were searched, and an e-mail survey was used to obtain information from U.S. Burn Fellowship Program directors about palliative medicine training. The Improving Palliative Care in the Intensive Care Unit Project Advisory Board synthesized published evidence with their own research and clinical experience in preparing this article. Mortality and severe morbidity for critically ill burned patients remains high. American Burn Association guidelines lay the foundation for a robust system of palliative care delivery, embedding palliative care principles and processes in intensive care by burn providers. Understanding basic burn care, challenges for symptom management and communication, and the culture of the particular burn unit, can optimize quality and integration of primary and specialist palliative care in this distinctive setting.

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

Palliative sedation, not slow euthanasia: a prospective, longitudinal study of sedation in Flemish palliative care units.

PubMed

Claessens, Patricia; Menten, Johan; Schotsmans, Paul; Broeckaert, Bert

2011-01-01

Palliative sedation remains a much debated and controversial issue. The limited literature on the topic often fails to answer ethical questions concerning this practice. The aim of this study was to describe the characteristics of patients who are being sedated for refractory symptoms in palliative care units (PCUs) from the time of admission until the day of death. A prospective, longitudinal, descriptive design was used to assess data in eight PCUs. The total sample consisted of 266 patients. Information on demographics, medication, food and fluid intake, decision making, level of consciousness, and symptom experience were gathered by nurses and researchers three times a week. If patients received palliative sedation, extra information was gathered. Of all included patients (n=266), 7.5% received palliative sedation. Sedation started, on average, 2.5 days before death and for half of these patients, the form of sedation changed over time. At the start of sedation, patients were in the end stage of their illness and needed total care. Patients were fully conscious and had very limited oral food or fluid intake. Only three patients received artificial fluids at the start of sedation. Patients reported, on average, two refractory symptoms, the most important ones being pain, fatigue, depression, drowsiness, and loss of feeling of well-being. In all cases, the patient gave consent to start palliative sedation because of increased suffering. This study revealed that palliative sedation is only administered in exceptional cases where refractory suffering is evident and for those patients who are close to the ends of their lives. Moreover, this study supports the argument that palliative sedation has no life-shortening effect. Copyright © 2011 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

Danish Palliative Care Database.

PubMed

Groenvold, Mogens; Adsersen, Mathilde; Hansen, Maiken Bang

2016-01-01

The aim of the Danish Palliative Care Database (DPD) is to monitor, evaluate, and improve the clinical quality of specialized palliative care (SPC) (ie, the activity of hospital-based palliative care teams/departments and hospices) in Denmark. The study population is all patients in Denmark referred to and/or in contact with SPC after January 1, 2010. The main variables in DPD are data about referral for patients admitted and not admitted to SPC, type of the first SPC contact, clinical and sociodemographic factors, multidisciplinary conference, and the patient-reported European Organisation for Research and Treatment of Cancer Quality of Life Questionaire-Core-15-Palliative Care questionnaire, assessing health-related quality of life. The data support the estimation of currently five quality of care indicators, ie, the proportions of 1) referred and eligible patients who were actually admitted to SPC, 2) patients who waited <10 days before admission to SPC, 3) patients who died from cancer and who obtained contact with SPC, 4) patients who were screened with European Organisation for Research and Treatment of Cancer Quality of Life Questionaire-Core-15-Palliative Care at admission to SPC, and 5) patients who were discussed at a multidisciplinary conference. In 2014, all 43 SPC units in Denmark reported their data to DPD, and all 9,434 cancer patients (100%) referred to SPC were registered in DPD. In total, 41,104 unique cancer patients were registered in DPD during the 5 years 2010-2014. Of those registered, 96% had cancer. DPD is a national clinical quality database for SPC having clinically relevant variables and high data and patient completeness.

Patients' and Parents' Needs, Attitudes, and Perceptions About Early Palliative Care Integration in Pediatric Oncology.

PubMed

Levine, Deena R; Mandrell, Belinda N; Sykes, April; Pritchard, Michele; Gibson, Deborah; Symons, Heather J; Wendler, David; Baker, Justin N

2017-09-01

Early palliative care integration for cancer patients is now touted as the optimal care model, yet significant barriers often prevent its implementation. A perceived barrier, especially for pediatric oncology patients, is the notion that patients and their families may not need or want palliative care involvement early in the disease trajectory. To determine the perception of symptom burden early in treatment and assess attitudes toward early integration of palliative care in pediatric oncology patient-parent pairs. Novel but pretested survey tools were administered to 129 patient-parent dyads of hospital-based pediatric oncology ambulatory clinics and inpatient units between September 2011 and January 2015. All patient participants were aged between 10 and 17 years and were diagnosed as having an oncologic condition 1 month to 1 year before enrollment. Both the patient and the parent in the dyad spoke English, and all participating parents provided written informed consent. A convenience sample was used for selection, with participants screened when otherwise presenting at a participating site. A total of 280 eligible participants were approached for study inclusion, 258 of whom were enrolled in the study (92.1% positive response-rate). Degree of perceived suffering from early symptom-related causes, attitudes toward early palliative care integration, and patient-parent concordance. Statistical analysis included descriptive statistics, calculation of concordance, McNemar test results, and Cochran-Armitage trend test results. Of the 129 patients in the dyads, 68 were boys, and 61 girls; of the 129 parents, 15 were men, and 114 women. Patients reported the following symptoms in the first month of cancer therapy: nausea (n = 109; 84.5%), loss of appetite (n = 97; 75.2%), pain (n = 96; 74.4%), anxiety (n = 77; 59.7%), constipation (n = 69; 53.5%), depression (n = 64; 49.6%), and diarrhea (n = 52; 40.3%). A large proportion of those

Minor Children of Palliative Patients: A Systematic Review of Psychosocial Family Interventions

PubMed Central

Krattenmacher, Thomas; Beierlein, Volker; Grimm, Johann Christian; Bergelt, Corinna; Romer, Georg; Möller, Birgit

2012-01-01

Abstract Although the whole family is affected by a parent's palliative disease, palliative care research does not yet routinely consider patients' minor children. Children's and adolescents' psychosocial functioning may be impaired during prolonged parental disease with poor prognosis. Therefore, more and more health care providers are establishing clinical initiatives for families of palliative patients with minor children. However, the number of these family interventions, as well as their theoretical and empirical backgrounds and evidence base, has yet to be determined. The purpose of this study was to systematically review structured and published interventions for this target group, as well as empirical studies on these interventions. The evidence base and impact of interventions on families were considered. Literature published between 1980 and present focusing on psychosocial family-, child- or parent-centered interventions during palliative care was retrieved from PsycINFO®, Embase, MEDLINE®, CINAHL®, and PSYNDEX databases. Five interventions met the inclusion criteria. Programs focused on different populations, had diverse empirical and theoretical backgrounds and features, and were evaluated by studies of varying methodological quality. This systematic review illustrates the lack of well designed and elaborated intervention concepts and evaluation studies in this field, highlighting the necessity of conceptual and methodological rigor to inform clinical practice on a sustainable basis in the future. PMID:22849598

Introduction of Virtual Patient Software to Enhance Physician Assistant Student Knowledge in Palliative Medicine.

PubMed

Prazak, Kristine A

2017-01-01

The purpose of this project was to infuse palliative medicine and end-of-life care creatively into physician assistant (PA) education. Nine second-year PA students volunteered to participate in this quasi-experimental, pretest-posttest pilot study. Students initially completed an anonymous survey evaluating seven domains of knowledge in palliative medicine coupled with a self-assessment in competence. Virtual patient software was then used to simulate clinical encounters that addressed major palliative care domains. Upon completion of these cases, the same survey, with the addition of three questions about their own personal feelings, was administered. Overall response was positive in regard to improved knowledge and the virtual patient experience. After completion of the cases, students rated their self-assessed skills higher in all domains than prior to completing the cases. Factual knowledge scores showed a slight but not significant improvement, with an average pre-survey score of 4.56 and post-survey score of 4.67. Using virtual patient software can be a way of infusing palliative medicine and end-of-life care into PA education. These encounters can then be modified to include interprofessional encounters within the health professions.

Palliative Care.

PubMed

Swetz, Keith M; Kamal, Arif H

2018-03-06

Palliative care prioritizes symptom management and quality of life throughout the course of serious illness. Regardless of whether care is inpatient or outpatient, primary or subspecialty, a solid understanding of the basics of effective communication, symptom management, and end-of-life care is crucial. This article reviews these essentials and provides an overview of current evidence to support patient-centered palliative care.

Educational Needs on Palliative Care for Cancer Patients in Iran: A SWOT Analysis.

PubMed

Ansari, Mojgan; Rassouli, Maryam; Akbari, Mohamad Esmaiel; Abbaszadeh, Abbas; Akbari Sari, Ali

2018-04-01

By acceptance of palliative care as a part of health system of each country and due to increasing prevalence of cancer, special focus on stakeholder's educational needs is of vital importance so that palliative care services are improved and the quality of life of patients is enhanced. This study was conducted to explore the educational needs of stakeholders of palliative care for cancer patients in Iran. This qualitative study with 20 semi-structured interviews was conducted from August 2016 to February 2017 in Shohadaye Tajrish and Emam Khomeini Hospitals of Tehran. Participants were selected through purposive sampling and included cancer patients and their family caregivers as well as healthcare providers, experts and policy-makers. The data were analyzed through Conventional Content Analysis of Landman and Graneheim using MAXQDA10 software. Statements of each main category of the study were summarized in SWOT categorizes. A total of 546 codes were extracted from the analysis of the interviews and four main categories and four subcategories were identified. The four main identified categories included: "academic education planning", "workforce education", "public awareness", and "patient and caregiver empowerment" that contained our subcategories as follows: "strengths", "weaknesses", "opportunities" and "threats" (SWOT). Meeting the educational needs of the stakeholders of palliative care requires policy-makers to identify the factors leading to strategies that are based on the use of opportunities, the removal of weaknesses, and coping with the threats to which the organization is faced.

[Dignity in the care of terminal ill and dying patients. Definitions and supportive interventions in palliative care].

PubMed

Mehnert, A; Schröder, A S; Puhlmann, K; Müllerleile, U; Koch, U

2006-11-01

Most patients, family members, health care professional as well as volunteers would agree that dignified care and being allowed to die with dignity are superior and unquestionable goals of palliative care. Although the majority of people have a more or less vague concept of dignity and despite its significance for palliative care, only a few empirical approaches to describe the sense of dignity from patients' and health care professionals' perspectives have been undertaken. However, individual descriptions of the dignity concept and definitions can serve as an impetus to improve the current palliative care practice by the development and evaluation of psychotherapeutic interventions for patients near the end of life and the allocation of resources. This article considers an internationally developed empirical-based model of dignity in severe and terminal ill patients by Chochinov et al. Furthermore, it illustrates the understanding of dignity as well as self-perceived exertions of influence on a patient's dignity from the perspective of health care professionals and volunteers. Psychotherapeutic interventions and strategies are introduced that can help conserve the sense of dignity of patients during palliative care.

Palliative Sedation in Advanced Cancer Patients: Does it Shorten Survival Time? - A Systematic Review

PubMed Central

Barathi, B; Chandra, Prabha S

2013-01-01

Background: Patients with advanced cancer often suffer from multiple refractory symptoms in the terminal phase of their life. Palliative sedation is one of the few ways to relieve this refractory suffering. Objectives: This systematic review investigated the effect of palliative sedation on survival time in terminally ill cancer patients. Materials and Methods: Six electronic databases were searched for both prospective and retrospective studies which evaluated the effect of palliative sedation on survival time. Only those studies which had a comparison group that did not receive palliative sedation were selected for the review. Abstracts of all retrieved studies were screened to include the most relevant studies and only studies which met inclusion criteria were selected. References of all retrieved studies were also screened for relevant studies. Selected studies were assessed for quality and data extraction was done using the structured data extraction form. Results: Eleven studies including four prospective and seven retrospective studies were identified. Mean survival time (MST) was measured as the time from last admission until death. A careful analysis of the results of all the 11 studies indicated that MST of sedated and non-sedated group was not statistically different in any of the studies. Conclusion: This systematic review supports the fact that palliative sedation does not shorten survival in terminally ill cancer patients. However, this conclusion needs to be taken with consideration of the methodology, study design, and the population studied of the included studies in this review. PMID:23766594

Palliative Sedation in Advanced Cancer Patients: Does it Shorten Survival Time? - A Systematic Review.

PubMed

Barathi, B; Chandra, Prabha S

2013-01-01

Patients with advanced cancer often suffer from multiple refractory symptoms in the terminal phase of their life. Palliative sedation is one of the few ways to relieve this refractory suffering. This systematic review investigated the effect of palliative sedation on survival time in terminally ill cancer patients. Six electronic databases were searched for both prospective and retrospective studies which evaluated the effect of palliative sedation on survival time. Only those studies which had a comparison group that did not receive palliative sedation were selected for the review. Abstracts of all retrieved studies were screened to include the most relevant studies and only studies which met inclusion criteria were selected. References of all retrieved studies were also screened for relevant studies. Selected studies were assessed for quality and data extraction was done using the structured data extraction form. Eleven studies including four prospective and seven retrospective studies were identified. Mean survival time (MST) was measured as the time from last admission until death. A careful analysis of the results of all the 11 studies indicated that MST of sedated and non-sedated group was not statistically different in any of the studies. This systematic review supports the fact that palliative sedation does not shorten survival in terminally ill cancer patients. However, this conclusion needs to be taken with consideration of the methodology, study design, and the population studied of the included studies in this review.

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.

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.

Pediatric palliative care and eHealth opportunities for patient-centered care.

PubMed

Madhavan, Subha; Sanders, Amy E; Chou, Wen-Ying Sylvia; Shuster, Alex; Boone, Keith W; Dente, Mark A; Shad, Aziza T; Hesse, Bradford W

2011-05-01

Pediatric palliative care currently faces many challenges including unnecessary pain from insufficiently personalized treatment, doctor-patient communication breakdowns, and a paucity of usable patient-centric information. Recent advances in informatics for consumer health through eHealth initiatives have the potential to bridge known communication gaps, but overall these technologies remain under-utilized in practice. This paper seeks to identify effective uses of existing and developing health information technology (HIT) to improve communications and care within the clinical setting. A needs analysis was conducted by surveying seven pediatric oncology patients and their extended support network at the Lombardi Pediatric Clinic at Georgetown University Medical Center in May and June of 2010. Needs were mapped onto an existing inventory of emerging HIT technologies to assess what existing informatics solutions could effectively bridge these gaps. Through the patient interviews, a number of communication challenges and needs in pediatric palliative cancer care were identified from the interconnected group perspective surrounding each patient. These gaps mapped well, in most cases, to existing or emerging cyberinfrastructure. However, adoption and adaptation of appropriate technologies could improve, including for patient-provider communication, behavioral support, pain assessment, and education, all through integration within existing work flows. This study provides a blueprint for more optimal use of HIT technologies, effectively utilizing HIT standards-based technology solutions to improve communication. This research aims to further stimulate the development and adoption of interoperable, standardized technologies and delivery of context-sensitive information to substantially improve the quality of care patients receive within pediatric palliative care clinics and other settings. Copyright © 2011 American Journal of Preventive Medicine. All rights reserved.

[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.

Ethical dilemmas faced by hospice nurses when administering palliative sedation to patients with terminal cancer.

PubMed

De Vries, Kay; Plaskota, Marek

2017-04-01

Palliative sedation is a method of symptom management frequently used in hospices to treat uncontrolled symptoms at the end of life. There is a substantial body of literature on this subject; however, there has been little research into the experiences of hospice nurses when administering palliative sedation in an attempt to manage the terminal restlessness experienced by cancer patients. Semistructured interviews were conducted with a purposive sample of seven hospice nurses who had cared for at least one patient who had undergone palliative sedation within the past year in a hospice in the south of England in the United Kingdom. A phenomenological approach and Colaizzi's stages of analysis were employed to develop themes from the data. Facilitating a "peaceful death" was the primary goal of the nurses, where through the administration of palliative sedation they sought to enable and support patients to be "comfortable," "relaxed," and "calm" at the terminal stage of their illness. Ethical dilemmas related to decision making were a factor in achieving this. These were: medication decisions, "juggling the drugs," "causing the death," sedating young people, the family "requesting" sedation, and believing that hospice is a place where death is hastened. Hospice nurses in the U.K. frequently encounter ethical and emotional dilemmas when administering palliative sedation. Making such decisions about using palliative sedation causes general discomfort for them. Undertaking this aspect of care requires confidence and competence on the part of nurses, and working within a supportive hospice team is of fundamental importance in supporting this practice.

A Study of the Association Between Multidisciplinary Home Care and Home Death Among Thai Palliative Care Patients.

PubMed

Nagaviroj, Kittiphon; Anothaisintawee, Thunyarat

2017-06-01

Many terminally ill patients would prefer to stay and die in their own homes, but unfortunately, some may not be able to do so. Although there are many factors associated with successful home deaths, receiving palliative home visits from the multidisciplinary care teams is one of the key factors that enable patients to die at home. Our study was aimed to find whether there was any association between our palliative home care program and home death. A retrospective study was conducted in the Department of Family Medicine at Ramathibodi Hospital between January 2012 and May 2014. All of the patients who were referred to multidisciplinary palliative care teams were included. The data set comprised of patient's profile, disease status, functional status, patient's symptoms, preferred place of death, frequency of home visits, types of team interventions, and patient's actual place of death. Multiple logistic regression was applied in order to determine the association between the variables and the probability of dying at home. A total of 142 patients were included into the study. At the end of the study, 50 (35.2%) patients died at home and 92 (64.8%) patients died in the hospital. The multivariate logistic regression analysis demonstrated a strong association between multidisciplinary home care and home death (odds ratio 6.57, 95% confidence interval [CI] 2.48-17.38). Palliative home care was a significant factor enabling patients who want to die at home. We encourage health policy makers to promote the development of community-based palliative care programs in Thailand.

Impact of Oncologists' Attitudes Toward End-of-Life Care on Patients' Access to Palliative Care.

PubMed

Hui, David; Cerana, Maria Agustina; Park, Minjeong; Hess, Kenneth; Bruera, Eduardo

2016-09-01

It is unclear how oncologists' attitudes toward end-of-life (EOL) care affect the delivery of care. The present study examined the association between oncologists' EOL care attitudes and (a) timely specialist palliative care referral, (b) provision of supportive care, and (c) EOL cancer treatment decisions. We randomly surveyed 240 oncology specialists at our tertiary care cancer center to assess their attitudes toward EOL care using a score derived from the Jackson et al. qualitative conceptual framework (0 = uncomfortable and 8 = highly comfortable with EOL care). We determined the association between this score and clinicians' report of specialist palliative care referral, provision of supportive care, and EOL cancer treatment decisions. Of the 182 respondents (response rate of 76%), the median composite EOL care score was 6 (interquartile range, 5-7). A higher EOL score was significantly associated with solid tumor oncology (median 7 vs. 6 for hematologic oncology; p = .003), a greater willingness to refer patients with newly diagnosed cancer to specialist palliative care (median, 7 vs. 6; p = .01), greater comfort with symptom management (median, 6 vs. 5; p = .01), and provision of counseling (median, 7 vs. 4; p < .001) but not with cancer treatment decisions. We observed a gradient effect, with higher scores associated with a greater proportion of patients referred to palliative care (score 0-4, 27%; 5, 31%; 6, 32%; 7, 35%; and 8, 45%; p = .007). Greater comfort with EOL care was associated with higher rates of specialist palliative care referral and self-reported primary palliative care delivery. More support and education are needed for oncologists who are less comfortable with EOL care. In the present survey of oncology specialists, most reported that they were comfortable with end-of-life (EOL) care, which was in turn, associated with greater provision of primary palliative care and higher rates of referral to specialist palliative care. The results of

Work Experiences of Patients Receiving Palliative Care at a Comprehensive Cancer Center: Exploratory Analysis.

PubMed

Glare, Paul A; Nikolova, Tanya; Alickaj, Alberta; Patil, Sujata; Blinder, Victoria

2017-07-01

Employment-related issues have been largely overlooked in cancer patients needing palliative care. These issues may become more relevant as cancer evolves into more of a chronic illness and palliative care is provided independent of stage or prognosis. To characterize the employment situations of working-age palliative care patients. Cross-sectional survey setting/subjects: Consecutive sample of 112 patients followed in palliative care outpatient clinics at a comprehensive cancer center. Thirty-seven-item self-report questionnaire covering demographics, clinical status, and work experiences since diagnosis. The commonest cancer diagnoses were breast, colorectal, gynecological, and lung. Eighty-one percent had active disease. Seventy-four percent were on treatment. Eighty percent recalled being employed at the time of diagnosis, with 65% working full time. At the time of the survey, 44% were employed and 26% were working full time. Most participants said work was important, made them feel normal, and helped them feel they were "beating the cancer". Factors associated with being employed included male gender, self-employed, and taking less than three months off work. Respondents with pain and/or other symptoms were significantly less likely to be working. On multivariate analysis, only pain (odds ratio [OR] 8.16, p < 0.001) and other physical symptoms (OR 5.90, p = 0.012) predicted work status; gender (OR 2.07), self-employed (OR 3.07), and current chemotherapy (OR 1.81) were included in the model, but were not statistically significant in this small sample. Work may be an important issue for some palliative care patients. Additional research is needed to facilitate ongoing employment for those who wish or need to continue working.

Patient-centeredness to anticipate and organize an end-of-life project for patients receiving at-home palliative care: a phenomenological study.

PubMed

Oude Engberink, Agnès; Badin, Mélanie; Serayet, Philippe; Pavageau, Sylvain; Lucas, François; Bourrel, Gérard; Norton, Joanna; Ninot, Grégory; Senesse, Pierre

2017-02-23

The development of end-of-life primary care is a socio-medical and ethical challenge. However, general practitioners (GPs) face many difficulties when initiating appropriate discussion on proactive shared palliative care. Anticipating palliative care is increasingly important given the ageing population and is an aim shared by many countries. We aimed to examine how French GPs approached and provided at-home palliative care. We inquired about their strategy for delivering care, and the skills and resources they used to devise new care strategies. Twenty-one GPs from the South of France recruited by phone according to their various experiences of palliative care agreed to participate. Semi-structured interview transcripts were examined using a phenomenological approach inspired by Grounded theory, and further studied with semiopragmatic analysis. Offering palliative care was perceived by GPs as a moral obligation. They felt vindicated in a process rooted in the paradigm values of their profession. This study results in two key findings: firstly, their patient-centred approach facilitated the anticipatory discussions of any potential event or intervention, which the GPs openly discussed with patients and their relatives; secondly, this approach contributed to build an "end-of-life project" meeting patients' wishes and needs. The GPs all shared the idea that the end-of-life process required human presence and recommended that at-home care be coordinated and shared by multi-professional referring teams. The main tenets of palliative care as provided by GPs are a patient-centred approach in the anticipatory discussion of potential events, personalized follow-up with referring multi-professional teams, and the collaborative design of an end-of-life project meeting the aspirations of the patient and his or her family. Consequently, coordination strategies involving specialized teams, GPs and families should be modelled according to the specificities of each care system.

Palliative Dental Care- A Boon for Debilitating

PubMed Central

Chintamaneni, Raja Lakshmi; Mpv, Prabhat; Gummadapu, Sarat; Salvadhi, Shyam Sundar

2014-01-01

World Health Organization defines “palliative care” as the active total care of patients whose disease is not responding to curative treatment. Palliative care actually deals with patients at the terminal end stage of the disease. We always face a question why a dentist should be in a palliative team? What is the exact role of dentist? Dental treatment may not always be strenuous and curative, but also can focus on improving quality of life of the patient. Hence forth the present paper enlightens the importance of dentist role in palliative team. PMID:25121074

[The Role of Certified Nurse in Palliative Care to Promote the Discharge Support and Regional Cooperation for Cancer Patients].

PubMed

Matsumoto, Mina; Abe, Yasushi; Tanaka, Yukie; Ino, Akiko; Yamazaki, Yoshie

2015-12-01

The objective of this study is to understand the issues and solutions considered by certified nurses(CN)in palliative care (hereinafter referred to as"palliative care CN)regarding discharge support and regional cooperation for cancer patients, and to discover the roles and responsibilities of palliative care CN. Data obtained from training sessions for 22 palliative care CNs was reconfigured and analyzed. As a result, problems related to discharge support and regional cooperation for cancer patients were classified into 13 categories and 3 core categories. The following roles for palliative care CN were proposed to promote discharge support and regional cooperation for cancer patients: (1) Inter-professional sharing of knowledge about patients and their families to reconcile the intentions of the patient and family members with predictions of progression of the illness; (2) Enable hospital nurses to obtain information about patients after discharge in order to establish a clear image for medical treatment; and(3) Support for ward nurses regarding cooperation to alleviate symptoms and offer medical care to patients who are highly dependent on medical care, and to become a point of contact for cooperation with visiting nurses.

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.

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.

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.

Developing a Research Agenda for Integrating Palliative Care into Critical Care and Pulmonary Practice To Improve Patient and Family Outcomes

PubMed Central

Reinke, Lynn F.; Cox, Christopher; Kross, Erin K.; Benzo, Roberto P.; Curtis, J. Randall

2017-01-01

Abstract Background: Palliative care is a medical specialty and philosophy of care that focuses on reducing suffering among patients with serious illness and their family members, regardless of disease diagnosis or prognosis. As critical illness or moderate to severe pulmonary disease confers significant disease-related symptom burdens, palliative care and palliative care specialists can aid in reducing symptom burden and improving quality of life among these patients and their family members. Objective: The objective of this article is to review the existing gaps in evidence for palliative care in pulmonary disease and critical illness and to use an interdisciplinary working group convened by the National Institutes of Health and the National Palliative Care Research Center to develop a research agenda to address these gaps. Methods: We completed a narrative review of the literature concerning the integration of palliative care into pulmonary and/or critical care. The review was based on recent systematic reviews on these topics as well as a summary of relevant articles identified through hand search. We used this review to identify gaps in current knowledge and develop a research agenda for the future. Results: We identified key areas of need and knowledge gaps that should be addressed to improve palliative care for patients with pulmonary and critical illness. These areas include developing and validating patient- and family-centered outcomes, identifying the key components of palliative care that are effective and cost-effective, developing and evaluating different models of palliative care delivery, and determining the effectiveness and cost-effectiveness of palliative care interventions. Conclusions: The goal of this research agenda is to encourage researchers, clinicians, healthcare systems, and research funders to identify research that can address these gaps and improve the lives of patients with pulmonary and critical illness and their family members

Usefulness of Palliative Care to Complement the Management of Patients on Left Ventricular Assist Devices

PubMed Central

Luo, Nancy; Rogers, Joseph G.; Dodson, Gwen C.; Patel, Chetan B.; Galanos, Anthony N.; Milano, Carmelo A.; O’Connor, Christopher M.; Mentz, Robert J.

2016-01-01

Within the last decade, advancements in left ventricular assist device (LVAD) therapy have allowed end-stage heart failure patients to live longer and with better quality of life. Like other life-saving interventions, however, there remains the risk of complications including infections, bleeding episodes, and stroke. The candidate for LVAD therapy faces complex challenges going forward, both physical and psychological, many of which may benefit from the application of palliative care principles by trained specialists. Despite these advantages, palliative care remains underused in many advanced heart failure programs. Here, we describe the benefits of palliative care, barriers to use within heart failure, and specific applications to the integrated care of patients on mechanical circulatory support. PMID:27474339

Post-Acute Care Facility as a Discharge Destination for Patients in Need of Palliative Care in Brazil.

PubMed

Soares, Luiz Guilherme L; Japiassu, André M; Gomes, Lucia C; Pereira, Rogéria

2018-02-01

Patients with complex palliative care needs can experience delayed discharge, which causes an inappropriate occupancy of hospital beds. Post-acute care facilities (PACFs) have emerged as an alternative discharge destination for some of these patients. The aim of this study was to investigate the frequency of admissions and characteristics of palliative care patients discharged from hospitals to a PACF. We conducted a retrospective analysis of PACF admissions between 2014 and 2016 that were linked to hospital discharge reports and electronic health records, to gather information about hospital-to-PACF transitions. In total, 205 consecutive patients were discharged from 6 different hospitals to our PACF. Palliative care patients were involved in 32% (n = 67) of these discharges. The most common conditions were terminal cancer (n = 42, 63%), advanced dementia (n = 17, 25%), and stroke (n = 5, 8%). During acute hospital stays, patients with cancer had significant shorter lengths of stay (13 vs 99 days, P = .004), a lower use of intensive care services (2% vs 64%, P < .001) and mechanical ventilation (2% vs 40%, P < .001), when compared to noncancer patients. Approximately one-third of discharges from hospitals to a PACF involved a heterogeneous group of patients in need of palliative care. Further studies are necessary to understand the trajectory of posthospitalized patients with life-limiting illnesses and what factors influence their decision to choose a PACF as a discharge destination and place of death. We advocate that palliative care should be integrated into the portfolio of post-acute services.

Kenya Hospices and Palliative Care Association: integrating palliative care in public hospitals in Kenya.

PubMed

Ali, Zipporah

2016-01-01

In Kenya, cancers as a disease group rank third as a cause of death after infectious and cardiovascular diseases. It is estimated that the annual incidence of cancer is about 37,000 new cases with an annual mortality of 28,000 cases (Kenya National Cancer Control Strategy 2010). The incidence of non-communicable diseases accounts for more than 50% of total hospital admissions and over 55% of hospital deaths (Kenya National Strategy for the Prevention and Control of Non Communicable Diseases 2015-2020). The prevalence of HIV is 6.8 (KIAS 2014). Most of these patients will benefit from palliative care services, hence the need to integrate palliative care services in the public healthcare system. The process of integrating palliative care in public hospitals involved advocacy both at the national level and at the institutional level, training of healthcare professionals, and setting up services within the hospitals that we worked with. Technical support was provided to each individual institution as needed. Eleven provincial hospitals across the country have now integrated palliative care services (Palliative Care Units) and are now centres of excellence. Over 220 healthcare providers have been trained, and approximately, over 30,000 patients have benefited from these services. Oral morphine is now available in the hospital palliative care units. As a success of the pilot project, Kenya Hospices and Palliative Care Association (KEHPCA) is now working with the Ministry of Health Kenya to integrate palliative care services in 30 other county hospitals across the country, thus ensuring more availability and access to more patients. Other developing countries can learn from Kenya's successful experience.

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.

Enabling sense-making for patients receiving outpatient palliative treatment: A participatory action research driven model for person-centered communication.

PubMed

Öhlén, J; Carlsson, G; Jepsen, A; Lindberg, I; Friberg, F

2016-06-01

In clinical palliative cancer care, the diversity of patient concerns over time makes information provision a critical issue, the demands of information-seeking patients presenting a challenge to both the communicative and organizational skills of the health provider. This study puts forward a practice model for communication between patients, their family members, and professional health providers during ongoing palliative chemotherapy; a model which supports the providers in enabling person-centered communication. A constant comparative analysis adapted to participatory action research was applied. The model was developed step-wise in three interrelated cycles, with results from previous studies from palliative cancer care processed in relation to professional health providers' experience-based clinical knowledge. In doing this, focus group discussions were carried out with providers and patients to develop and revise the model. The Enabling Sense Making model for person-centered communication gave rise to three domains (which are also the major communicative actors in palliative care): the patient, the family, and the provider. These actors were placed in the context of a communicative arena. The three respective domains were built up in different layers discriminating between significant aspects of person-centered communication, from the manifest that is most usually explicated in dialogues, to the latent that tends to be implicitly mediated. The model intends to facilitate timely reorientation of care from curative treatment or rehabilitation to palliation, as well as the introduction of appropriate palliative interventions over time during palliative phases. In this way the model is to be regarded a frame for directing the awareness of the professionals, which focuses on how to communicate and how to consider the patient's way of reasoning. The model could be used as a complement to other strategic initiatives for the advancement of palliative care

Educational Needs on Palliative Care for Cancer Patients in Iran: A SWOT Analysis

PubMed Central

Ansari, Mojgan; Rassouli, Maryam; Akbari, Mohamad Esmaiel; Abbaszadeh, Abbas; Akbari Sari, Ali

2018-01-01

ABSTRACT Background: By acceptance of palliative care as a part of health system of each country and due to increasing prevalence of cancer, special focus on stakeholder’s educational needs is of vital importance so that palliative care services are improved and the quality of life of patients is enhanced. This study was conducted to explore the educational needs of stakeholders of palliative care for cancer patients in Iran. Methods: This qualitative study with 20 semi-structured interviews was conducted from August 2016 to February 2017 in Shohadaye Tajrish and Emam Khomeini Hospitals of Tehran. Participants were selected through purposive sampling and included cancer patients and their family caregivers as well as healthcare providers, experts and policy-makers. The data were analyzed through Conventional Content Analysis of Landman and Graneheim using MAXQDA10 software. Statements of each main category of the study were summarized in SWOT categorizes. Result: A total of 546 codes were extracted from the analysis of the interviews and four main categories and four subcategories were identified. The four main identified categories included: ”academic education planning”, “workforce education”, “public awareness”, and “patient and caregiver empowerment” that contained our subcategories as follows: “strengths”, “weaknesses”, “opportunities” and “threats” (SWOT). Conclusion: Meeting the educational needs of the stakeholders of palliative care requires policy-makers to identify the factors leading to strategies that are based on the use of opportunities, the removal of weaknesses, and coping with the threats to which the organization is faced. PMID:29607340

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

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

Palliative Care-Albania.

PubMed

Rama, Rudina; Çarçani, Valbona; Prifti, Fatmir; Huta, Kristo; Xhixha, Ali; Connor, Stephen R

2018-02-01

Sixty percent of cancer patients are diagnosed with advanced stages of disease and those diagnosed in early stages face challenges to receive adequate treatment. Palliative care has had significant developments in recent years in Albania because of a close partnership with the Ministry of Health, local nonprofit organizations, and the Open Society Foundation Albania. In 2011, a five-year action plan for palliative care as one of four parts of the National Cancer Control Plan was approved. At the end of 2014, the first palliative care law was approved by Parliament. Palliative care by-laws, documents, standards, clinical protocols, and guidelines for adults and children have been developed. Training and education are being provided to primary care professionals. Curricula on palliative care have been developed for the faculty of medicine, nursing high schools, and social work. About 80% of essential medications used in palliative care are available in Albania, 50% of these are paid for and have some access restrictions, and meanwhile the opiophobia still remains an enormous barrier. In the last three years, significant progress has been made in service provision. From only one public palliative care service in 2013, there are now eight palliative care services in eight of the 11 regional hospitals. By the end of 2016, it is expected that palliative care services will be available in all regional hospitals in the country. Copyright © 2017. Published by Elsevier Inc.

Societal costs of home and hospital end-of-life care for palliative care patients in Ontario, Canada.

PubMed

Yu, Mo; Guerriere, Denise N; Coyte, Peter C

2015-11-01

In Canada, health system restructuring has led to a greater focus on home-based palliative care as an alternative to institutionalised palliative care. However, little is known about the effect of this change on end-of-life care costs and the extent to which the financial burden of care has shifted from the acute care public sector to families. The purpose of this study was to assess the societal costs of end-of-life care associated with two places of death (hospital and home) using a prospective cohort design in a home-based palliative care programme. Societal cost includes all costs incurred during the course of palliative care irrespective of payer (e.g. health system, out-of-pocket, informal care-giving costs, etc.). Primary caregivers of terminal cancer patients were recruited from the Temmy Latner Centre for Palliative Care in Toronto, Canada. Demographic, service utilisation, care-giving time, health and functional status, and death data were collected by telephone interviews with primary caregivers over the course of patients' palliative trajectory. Logistic regression was conducted to model an individual's propensity for home death. Total societal costs of end-of-life care and component costs were compared between home and hospital death using propensity score stratification. Costs were presented in 2012 Canadian dollars ($1.00 CDN = $1.00 USD). The estimated total societal cost of end-of-life care was $34,197.73 per patient over the entire palliative trajectory (4 months on average). Results showed no significant difference (P > 0.05) in total societal costs between home and hospital death patients. Higher hospitalisation costs for hospital death patients were replaced by higher unpaid caregiver time and outpatient service costs for home death patients. Thus, from a societal cost perspective, alternative sites of death, while not associated with a significant change in total societal cost of end-of-life care, resulted in changes in the distribution of

Center to Advance Palliative Care palliative care clinical care and customer satisfaction metrics consensus recommendations.

PubMed

Weissman, David E; Morrison, R Sean; Meier, Diane E

2010-02-01

Data collection and analysis are vital for strategic planning, quality improvement, and demonstration of palliative care program impact to hospital administrators, private funders and policymakers. Since 2000, the Center to Advance Palliative Care (CAPC) has provided technical assistance to hospitals, health systems and hospices working to start, sustain, and grow nonhospice palliative care programs. CAPC convened a consensus panel in 2008 to develop recommendations for specific clinical and customer metrics that programs should track. The panel agreed on four key domains of clinical metrics and two domains of customer metrics. Clinical metrics include: daily assessment of physical/psychological/spiritual symptoms by a symptom assessment tool; establishment of patient-centered goals of care; support to patient/family caregivers; and management of transitions across care sites. For customer metrics, consensus was reached on two domains that should be tracked to assess satisfaction: patient/family satisfaction, and referring clinician satisfaction. In an effort to ensure access to reliably high-quality palliative care data throughout the nation, hospital palliative care programs are encouraged to collect and report outcomes for each of the metric domains described here.

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.

On the road again: patient perspectives on commuting for palliative care.

PubMed

Pesut, Barbara; Robinson, Carole A; Bottorff, Joan L; Fyles, Gillian; Broughton, Sandra

2010-06-01

The aim of this research project was to gain an understanding of the experiences of rural cancer patients who commute to an urban cancer center for palliative care. The study utilized a mixed method design. Fifteen individuals with a palliative designation participated in semi-structured interviews and filled out the Problems and Needs in Palliative Care Questionnaire. Qualitative findings included three major themes: cultures of rural life and care, strategies for commuting, and the effects of commuting. Participants valued their rural lifestyles and gained significant support from their communities. Strategies included preparing for the trip with particular attention to pain management, making the most of time, and maintaining significant relationships. Establishing a routine helped to offset the anxiety of commuting. Commuting was costly but the quality of life and supportive relationships obtained through treatment were significant benefits. Questionnaire data suggested that participants were experiencing a number of problems but few indicated they desired more professional attention to those problems. Rural lifestyles are often an important part of overall well-being and commuting for care is both costly and complex. Health care providers should assist individuals to weigh the relative contributions of staying in their rural locale versus commuting for care to their overall quality of life. Palliative-care individuals in this study indicated a number of ongoing problems but were not inclined to seek further assistance from health care providers in addressing those problems. Clinicians should actively inquire about problems and further research is needed to understand why patients are reluctant to seek help.

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

[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.

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

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

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.

[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.

Palliative Care Physicians' Attitudes Toward Patient Autonomy and a Good Death in East Asian Countries.

PubMed

Morita, Tatsuya; Oyama, Yasuhiro; Cheng, Shao-Yi; Suh, Sang-Yeon; Koh, Su Jin; Kim, Hyun Sook; Chiu, Tai-Yuan; Hwang, Shinn-Jang; Shirado, Akemi; Tsuneto, Satoru

2015-08-01

Clarification of the potential differences in end-of-life care among East Asian countries is necessary to provide palliative care that is individualized for each patient. The aim was to explore the differences in attitude toward patient autonomy and a good death among East Asian palliative care physicians. A cross-sectional survey was performed involving palliative care physicians in Japan, Taiwan, and Korea. Physicians' attitudes toward patient autonomy and physician-perceived good death were assessed. A total of 505, 207, and 211 responses were obtained from Japanese, Taiwanese, and Korean physicians, respectively. Japanese (82%) and Taiwanese (93%) physicians were significantly more likely to agree that the patient should be informed first of a serious medical condition than Korean physicians (74%). Moreover, 41% and 49% of Korean and Taiwanese physicians agreed that the family should be told first, respectively; whereas 7.4% of Japanese physicians agreed. Physicians' attitudes with respect to patient autonomy were significantly correlated with the country (Japan), male sex, physician specialties of surgery and oncology, longer clinical experience, and physicians having no religion but a specific philosophy. In all 12 components of a good death, there were significant differences by country. Japanese physicians regarded physical comfort and autonomy as significantly more important and regarded preparation, religion, not being a burden to others, receiving maximum treatment, and dying at home as less important. Taiwanese physicians regarded life completion and being free from tubes and machines as significantly more important. Korean physicians regarded being cognitively intact as significantly more important. There are considerable intercountry differences in physicians' attitudes toward autonomy and physician-perceived good death. East Asia is not culturally the same; thus, palliative care should be provided in a culturally acceptable manner for each country

[Analysis of palliative sedation in hospitalised elderly patients: Effectiveness of a protocol].

PubMed

Mateos-Nozal, Jesús; García-Cabrera, Lorena; Montero Errasquín, Beatriz; Cruz-Jentoft, Alfonso José; Rexach Cano, Lourdes

2016-01-01

To measure changes in the practice of palliative sedation during agony in hospitalised elderly patients before and after the implementation of a palliative sedation protocol. A retrospective before-after study was performed in hospitalised patients over 65 years old who received midazolam during hospital admission and died in the hospital in two 3-month periods, before and after the implementation of the protocol. Non-sedative uses of midazolam and patients in intensive care were excluded. Patient and admission characteristics, the consent process, withdrawal of life-sustaining treatments, and the sedation process (refractory symptom treated, drug doses, assessment and use of other drugs) were recorded. Association was analysed using the Chi(2) and Student t tests. A total of 143 patients were included, with no significant differences between groups in demographic characteristics or symptoms. Do not resuscitate (DNR) orders were recorded in approximately 70% of the subjects of each group, and informed consent for sedation was recorded in 91% before vs. 84% after the protocol. Induction and maintenance doses of midazolam followed protocol recommendations in 1.3% before vs 10.4% after the protocol was implemented (P=.02) and adequate rescue doses were used in 1.3% vs 11.9% respectively (P=.01). Midazolam doses were significantly lower (9.86mg vs 18.67mg, P<.001) when the protocol was used than when it was not used. Ramsay sedation score was used in 8% vs. 12% and the Palliative Care Team was involved in 35.5% and 16.4% of the cases (P=.008) before and after the protocol, respectively. Use of midazolam slightly improved after the implementation of a hospital protocol on palliative sedation. The percentage of adequate sedations and the general process of sedation were mostly unchanged by the protocol. More education and further assessment is needed to gauge the effect of these measures in the future. Copyright © 2015 SEGG. Published by Elsevier Espana. All rights

[Silence pact from the perspective of caretakers of palliative care patients].

PubMed

Cejudo López, Ángela; López López, Begoña; Duarte Rodríguez, Miguel; Crespo Serván, María Pilar; Coronado Illescas, Concepción; de la Fuente Rodríguez, Carlota

2015-01-01

To determine why terminally-ill patients, family caregivers and health care providers make a pact of silence about the terminal status of the patient, and to identify the attitudes, experiences and opinions of family caregivers concerning the conspiracy of silence in palliative care. A qualitative phenomenological study based on an interpretive analysis, conducted in Primary Health Care, Seville, Spain. Study dimensions: knowledge of the diagnosis and prognosis of the condition; disclosure of information; reaction to information received, feelings and approach to death; information disclosed to the patient and reasons behind partial disclosure; communication between patients, families, and health care providers. Family caregivers of patients on palliative care suspicious about a pact of silence. Family caregivers hamper professional-patient communication; use of deceit to conceal the truth; suspicion that the patient knows the truth; the clinician conceals the truth; paternalist attitudes; feelings of sadness, grief, resignation, acceptance of the disease. The pact of silence has negative effects on coping with death, quality of life in the last days of life, and mourning. Communication between patients, health care providers, and families should be improved to prevent the pact of silence, and help patients cope with death. Copyright © 2015 Elsevier España, S.L.U. All rights reserved.

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

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.

Need for palliative care for neurological diseases.

PubMed

Provinciali, Leandro; Carlini, Giulia; Tarquini, Daniela; Defanti, Carlo Alberto; Veronese, Simone; Pucci, Eugenio

2016-10-01

The new concept of palliative care supports the idea of palliation as an early approach to patients affected by disabling and life-limiting disease which focuses on the patient's quality of life along the entire course of disease. This model moves beyond the traditional concept of palliation as an approach restricted to the final stage of disease and widens the fields of intervention. There is a growing awareness of the importance of palliative care not only in oncological diseases but also in many other branches of medicine, and it appears particularly evident in the approach to many of the most frequent neurological diseases that are chronic, incurable and autonomy-impairing illnesses. The definition and implementation of palliative goals and procedures in neurology must take into account the specific features of these conditions in terms of the complexity and variability of symptoms, clinical course, disability and prognosis. The realization of an effective palliative approach to neurological diseases requires specific skills and expertise to adapt the concept of palliation to the peculiarities of these diseases; this approach should be realized through the cooperation of different services and the action of a multidisciplinary team in which the neurologist should play a central role to identify and face the patient's needs. In this view, it is paramount for the neurologist to be trained in these issues to promote the integration of palliative care in the care of neurological patients.

[Rehabilitation and palliative care of patients with severe COPD must be integrated].

PubMed

Ringbæk, Thomas; Wilcke, Torgny

2013-04-29

Treatment elements of rehabilitation and palliative care are described in relation to the main clinical manifestations of severe and very severe chronic obstructive pulmonary disease (COPD). With increasing loss of function the need for multidisciplinary effort increases. Physiotherapy, occupational therapy and medical treatment are adjusted to the improvement of the current quality of life with new treatment goals and decision on cessation of treatment including oxygen without subjective effect. Palliation with end-of-life discussion must be integrated in COPD rehabilitation programmes especially for patients with frequent exacerbations.

Patient safety in palliative care: A mixed-methods study of reports to a national database of serious incidents.

PubMed

Yardley, Iain; Yardley, Sarah; Williams, Huw; Carson-Stevens, Andrew; Donaldson, Liam J

2018-06-01

Patients receiving palliative care are vulnerable to patient safety incidents but little is known about the extent of harm caused or the origins of unsafe care in this population. To quantify and qualitatively analyse serious incident reports in order to understand the causes and impact of unsafe care in a population receiving palliative care. A mixed-methods approach was used. Following quantification of type of incidents and their location, a qualitative analysis using a modified framework method was used to interpret themes in reports to examine the underlying causes and the nature of resultant harms. Reports to a national database of 'serious incidents requiring investigation' involving patients receiving palliative care in the National Health Service (NHS) in England during the 12-year period, April 2002 to March 2014. A total of 475 reports were identified: 266 related to pressure ulcers, 91 to medication errors, 46 to falls, 21 to healthcare-associated infections (HCAIs), 18 were other instances of disturbed dying, 14 were allegations against health professions, 8 transfer incidents, 6 suicides and 5 other concerns. The frequency of report types differed according to the care setting. Underlying causes included lack of palliative care experience, under-resourcing and poor service coordination. Resultant harms included worsened symptoms, disrupted dying, serious injury and hastened death. Unsafe care presents a risk of significant harm to patients receiving palliative care. Improvements in the coordination of care delivery alongside wider availability of specialist palliative care support may reduce this risk.

Growing Pains: Palliative Care Making Gains

Cancer.gov

Palliative care has been shown to improve patient outcomes such as symptom management, quality of life, and patient and family satisfaction with care. The availability and role of palliative care varies tremendously, but acceptance among oncologists and other clinicians has never been greater.

[Comparison of Patients and their Care in Urban and Rural Specialised Palliative Home Care - A Single Service Analysis].

PubMed

Heckel, M; Stiel, S; Frauendorf, T; Hanke, R M; Ostgathe, C

2016-07-01

Specialised outpatient palliative care teams (in Germany called SAPV) aim to ensure best possible end-of-life care for outpatients with complex needs. Information on the influence of living areas (rural vs. urban) on patient and care related aspects is rare. This study aims to explore differences between palliative care patients in urban and rural dwellings concerning their nursing and service characteristics. A retrospective data analysis of documentary data for 502 patients supplied by SAPV team from December 2009 to June 2012 was conducted. Patients and care characteristics were investigated by frequency analysis and were compared for both groups of urban and rural dwelling patients (T test, Chi², Fisher's exact test p < 0.05). 387 complete data sets could be included. Urban (n=197) and rural (n=190) dwelling patients were almost equally sized groups. The mean age of the whole sample was 74.5 years, 55.3% were female. Most patients were diagnosed with cancer (76.8%). No significant differences in urban and rural dwelling patients concerning most demographics, care, disease and service related aspects of palliative home care could be detected. An exception is that the rate of re-admittance to hospital is higher for rural dwelling patients (Fisher's exact test p=0.022). Although predominantly presumed, the single service analysis shows - except for the re-admittance rate to hospital - no considerable differences between palliative care patients regarding their living area. Our findings indicate that patients cared for in rural and urban settings have similar needs and impose similar requirements on palliative care teams. © Georg Thieme Verlag KG Stuttgart · New York.

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.

Palliative Care Options for a Young Adult Patient with a Diffuse Intrinsic Pontine Glioma.

PubMed

Sison, Julian; Tran, Hung; Margol, Ashley; Tiwari, Nishant; Garcia, Karla M; Cotter, Jennifer; Kiehna, Erin; Olch, Arthur J; Wong, Kenneth

2017-08-18

Diffuse intrinsic pontine gliomas (DIPGs) are rare but devastating brain tumors that occur primarily in children. These gliomas have poor prognoses and present options focus on palliation of symptoms and prolongation of life. Here, we present a case of a 16-year-old female diagnosed with a DIPG whose age group has been mostly left out of discussions regarding psychosocial support options. This report is meant to start a conversation about the different support options available at our institution that have shown promising results in the literature for palliative care applications. These options can include camps for patients with brain tumors, psychological counseling, the Ronald McDonald House, and other psychosocial programs. Many of these programs can be tailored to meet the specific needs of adolescent and young adult (AYA) patients and will hopefully be integrated into a comprehensive palliative care regimen in future studies.

Cost-effectiveness of a transitional home-based palliative care program for patients with end-stage heart failure.

PubMed

Wong, Frances Kam Yuet; So, Ching; Ng, Alina Yee Man; Lam, Po-Tin; Ng, Jeffrey Sheung Ching; Ng, Nancy Hiu Yim; Chau, June; Sham, Michael Mau Kwong

2018-02-01

Studies have shown positive clinical outcomes of specialist palliative care for end-stage heart failure patients, but cost-effectiveness evaluation is lacking. To examine the cost-effectiveness of a transitional home-based palliative care program for patients with end-stage heart failure patients as compared to the customary palliative care service. A cost-effectiveness analysis was conducted alongside a randomized controlled trial (Trial number: NCT02086305). The costs included pre-program training, intervention, and hospital use. Quality of life was measured using SF-6D. The study took place in three hospitals in Hong Kong. The inclusion criteria were meeting clinical indicators for end-stage heart failure patients including clinician-judged last year of life, discharged to home within the service area, and palliative care referral accepted. A total of 84 subjects (study = 43, control = 41) were recruited. When the study group was compared to the control group, the net incremental quality-adjusted life years gain was 0.0012 (28 days)/0.0077 (84 days) and the net incremental costs per case was -HK$7935 (28 days)/-HK$26,084 (84 days). The probability of being cost-effective was 85% (28 days)/100% (84 days) based on the cost-effectiveness thresholds recommended both by National Institute for Health and Clinical Excellence (£20,000/quality-adjusted life years) and World Health Organization (Hong Kong gross domestic product/capita in 2015, HK$328117). Results suggest that a transitional home-based palliative care program is more cost-effective than customary palliative care service. Limitations of the study include small sample size, study confined to one city, clinic consultation costs, and societal costs including patient costs and unpaid care-giving costs were not included.

Barriers to Optimal Palliative Care of Lung Transplant Candidates

PubMed Central

Colman, Rebecca E.; Curtis, J. Randall; Nelson, Judith E.; Efferen, Linda; Hadjiliadis, Denis; Levine, Deborah J.; Meyer, Keith C.; Padilla, Maria; Strek, Mary; Varkey, Basil

2013-01-01

Background: The provision of effective palliative care is of great importance to patients awaiting lung transplantation. Although the prospect of lung transplantation provides hope to patients and their families, these patients are usually very symptomatic from their underlying disease. Methods: An e-mail questionnaire was sent to members of the American College of Chest Physicians’ Transplant NetWork and the Pulmonary Council of the International Society for Heart and Lung Transplantation (ISHLT). The survey included questions about barriers to providing palliative care, the availability of palliative care services, and recommended strategies to improve palliative care for lung transplant candidates. Results: The 158 respondents represented approximately 65% of transplant programs in the ISHLT registry. Respondents were in practice a mean of 11.3 (± 9) years, 70% were pulmonologists, 17% were surgeons, and 13% were other care providers. Barriers were classified into domains including patient factors, family factors, physician factors, and institutional/transplant program/lung allocation system factors. Significant patient/family barriers included unrealistic patient/family expectations about survival, unwillingness to plan end-of-life care, concerns about abandonment or inappropriate care after enrollment in a palliative care program, and family disagreements about care goals. For institutional/program/allocation system barriers, only the requirement for weight loss or gain to meet program-specific BMI requirements was identified. Significant physician barriers included competing time demands and the seemingly contradictory goals of transplant vs palliative care. Strategies recommended to improve palliative care included routine advance care planning for patients awaiting transplantation, access to palliative care specialists, training of transplant physicians in symptom management, and regular meetings among transplant physicians, nurses, patients, and

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 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.

Palliative sedation for cancer patients included in a home care program: a retrospective study.

PubMed

Calvo-Espinos, Claudio; Ruiz de Gaona, Estefania; Gonzalez, Cristina; Ruiz de Galarreta, Lucia; Lopez, Cristina

2015-06-01

Palliative sedation is a common treatment in palliative care. The home is a difficult environment for research, and there are few studies about sedation at home. Our aim was to analyze this practice in a home setting. We conducted a retrospective cross-sectional descriptive study in a home cohort during 2011. The inclusion criteria were as follows: 18 years or older and enrolled in the Palliative Home Care Program (PHCP) with advanced cancer. The variables employed were: sex, age, primary tumor location, and place of death. We also registered indication, type, drug and dose, awareness of diagnosis and prognosis, consent, survival, presence or absence of rales, painful mouth, and ulcers in patients sedated at home. We also collected the opinions of family members and professionals about the suffering of sedated patients. A total of 446 patients (56% at home) of the 617 admitted to the PHCP between January and December of 2011 passed away. The typical patient in our population was a 70-year-old man with a lung tumor. Some 35 (14%) home patients required sedation, compared to 93 (49%) at the hospital. The most frequent indication was delirium (70%), with midazolam the most common drug (mean dose, 40 mg). Survival was around three days. Rales were frequent (57%) as well as awareness of diagnosis and prognosis (77 and 71%, respectively). Perception of suffering after sedation was rare among relatives (17%) and professionals (8%). In most cases, the decision was made jointly by professionals and family members. Our study confirmed the role of palliative sedation as an appropriate therapeutic tool in the home environment.

[The palliative treatment plan as basis for informed decisions in palliative or emergency care].

PubMed

Lederer, Wolfgang; Feichtner, Angelika; Medicus, Elisabeth

2011-11-01

Acute vital crisis in end-of-life situations may result in a person being hospitalized and thus, expelled from his intimate environment, which aggravates the continuity of care. This entails a heavy burden for patients and necessitates an emergency medical services (EMS) call without recognizable benefit in many cases. Crisis episodes frequently mark the beginning of the dying process. Advance care planning or end-of-life care in elderly patients can help prevent such situations and ensure high contentment of patients, families and caregivers. Frequently, the question arises whether the burden arising from further hospitalization or from certain medical treatment options is reasonably balanced by the potential benefits of the steps taken. In such comprehensive care settings a custom-tailored palliative treatment plan may serve as an instrument for advance care planning. A palliative treatment plan set up by a physician together with a caregiver helps ensure that acute problems can be solved quickly and satisfactorily in the patient's customary surroundings. If EMS assistance is still needed, the emergency physician has written information on the patient's situation and can act quickly to meet the patient's immediate needs. This also means that EMS personnel must be properly trained in providing palliative care. In this way the palliative treatment plan can help caregivers continue to care for patients in their intimate surroundings.

Future care planning: a first step to palliative care for all patients with advanced heart disease.

PubMed

Denvir, M A; Murray, S A; Boyd, K J

2015-07-01

Palliative care is recommended for patients with end-stage heart failure with several recent, randomised trials showing improvements in symptoms and quality of life and more studies underway. Future care planning provides a framework for discussing a range of palliative care problems with patients and their families. This approach can be introduced at any time during the patient's journey of care and ideally well in advance of end-of-life care. Future care planning is applicable to a wide range of patients with advanced heart disease and could be delivered systematically by cardiology teams at the time of an unplanned hospital admission, akin to cardiac rehabilitation for myocardial infarction. Integrating cardiology care and palliative care can benefit many patients with advanced heart disease at increased risk of death or hospitalisation. Larger, randomised trials are needed to assess the impact on patient outcomes and experiences. 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.

Music therapy for palliative care: A realist review.

PubMed

McConnell, Tracey; Porter, Sam

2017-08-01

Music therapy has experienced a rising demand as an adjunct therapy for symptom management among palliative care patients. We conducted a realist review of the literature to develop a greater understanding of how music therapy might benefit palliative care patients and the contextual mechanisms that promote or inhibit its successful implementation. We searched electronic databases (CINAHL, Embase, Medline, and PsychINFO) for literature containing information on music therapy for palliative care. In keeping with the realist approach, we examined all relevant literature to develop theories that could explain how music therapy works. A total of 51 articles were included in the review. Music therapy was found to have a therapeutic effect on the physical, psychological, emotional, and spiritual suffering of palliative care patients. We also identified program mechanisms that help explain music therapy's therapeutic effects, along with facilitating contexts for implementation. Music therapy may be an effective nonpharmacological approach to managing distressing symptoms in palliative care patients. The findings also suggest that group music therapy may be a cost-efficient and effective way to support staff caring for palliative care patients. We encourage others to continue developing the evidence base in order to expand our understanding of how music therapy works, with the aim of informing and improving the provision of music therapy for palliative care patients.

Muslim physicians and palliative care: attitudes towards the use of palliative sedation.

PubMed

Muishout, George; van Laarhoven, Hanneke W M; Wiegers, Gerard; Popp-Baier, Ulrike

2018-05-08

Muslim norms concerning palliative sedation can differ from secular and non-Muslim perceptions. Muslim physicians working in a Western environment are expected to administer palliative sedation when medically indicated. Therefore, they can experience tension between religious and medical norms. To gain insight into the professional experiences of Muslim physicians with palliative sedation in terms of religious and professional norms. Interpretative phenomenological study using semi-structured interviews to take a closer look at the experiences of Muslim physicians with palliative sedation. Data were recorded, transcribed and analysed by means of interpretative phenomenological analysis (IPA). Ten Muslim physicians, working in the Netherlands, with professional experience of palliative sedation. Two main themes were identified: professional self-concept and attitudes towards death and dying. Participants emphasized their professional responsibility when making treatment decisions, even when these contravened the prevalent views of Islamic scholars. Almost all of them expressed the moral obligation to fight their patients' pain in the final stage of life. Absence of acceleration of death was considered a prerequisite for using palliative sedation by most participants. Although the application of palliative sedation caused friction with their personal religious conceptions on a good death, participants followed a comfort-oriented care approach corresponding to professional medical standards. All of them adopted efficient strategies for handling of palliative sedation morally and professionally. The results of this research can contribute to and provide a basis for the emergence of new, applied Islamic ethics regarding palliative sedation.

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

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

Palliative care for respiratory disease: An education model of care.

PubMed

Bowman, Brynn; Meier, Diane E

2018-02-01

That palliative care improves quality of life for seriously ill patients and their families is well known - but how can healthcare providers ensure that the palliative needs of all patients are being assessed and addressed? A growing number of curricula in core palliative care practices have been developed to ensure that clinicians from all specialties and disciplines have the necessary training to manage pain and symptoms and discuss care goals with patients and families. Through broad-based training in core palliative care skills, combined with referral to specialty palliative care for high-need patients, providers can improve quality of life for their patients with respiratory disease.

Palliative Care and Spiritual Well-Being in Lung Cancer Patients and Family Caregivers

PubMed Central

Sun, Virginia; Kim, Jae Y.; Irish, Terry L.; Borneman, Tami; Sidhu, Rupinder K.; Klein, Linda; Ferrell, Betty

2015-01-01

Objective Spiritual well-being is an important dimension of quality of life (QOL) and is a core component of quality oncology and palliative care. In this analysis, we aimed to describe spiritual well-being outcomes in a National Cancer Institute (NCI)-supported Program Project that tested the effectiveness of an interdisciplinary palliative care intervention in lung cancer patients and their family caregivers (FCGs). Methods Patients undergoing treatments for NSCLC and their FCGs were enrolled in a prospective, quasi-experimental study. Patients and FCGs in the intervention group were presented at interdisciplinary care meetings and received four educational sessions that included one session focused on spiritual well-being. Spiritual well-being for patients was measured using the FACIT-Sp-12, and FCG spiritual well-being was measured using the COH-QOL-FCG spiritual well-being subscale. Multivariate analysis of covariance was undertaken for subscale and item scores at 12 weeks, controlling for baseline, by religious affiliations (yes or no) and group assignment. Results Religiously-affiliated patients reported better scores in the Faith subscale and items on finding strength and comfort in faith and spiritual beliefs compared to non-affiliated patients. Non-affiliated patients had better scores for feeling a sense of harmony within oneself. By group, patients who received the intervention had significantly better scores for the Meaning/Peace subscale. Conclusions Our findings support the multidimensionality of spiritual well-being that includes constructs such as meaning and faith for lung cancer patients and FCGs with or without religious affiliations. Palliative care interventions should include content that targets the spiritual needs of both patients and FCGs. PMID:26374624

Symptom patterns of advanced cancer patients in a palliative care unit.

PubMed

Tsai, Jaw-Shiun; Wu, Chih-Hsun; Chiu, Tai-Yuan; Hu, Wen-Yu; Chen, Ching-Yu

2006-09-01

This study involved longitudinal evaluations of symptom severity and describes the symptom patterns of 77 terminal cancer patients (median age: 62 years; 61% female), selected from 537 consecutive patients admitted to the Palliative Care Unit of the National Taiwan University Hospital. The most common primary cancer sites in these patients were lung (23.4%), liver (15.6%), and stomach (13%). Nineteen physical and psychological symptoms were assessed using different scales. The median number of symptoms was 11 (range: 1-18) on admission, among which weakness, fatigue, anorexia, pain, and depression were the most common. A comparison of the initial symptom severity scores with those at one week after admission and two days before death suggested six symptom change patterns: A: continuous static (restless/heat, abdominal fullness, constipation, dizziness, and insomnia); B: static-increase (fatigue, weakness, nausea/vomiting, taste alteration, dysphagia, diarrhea, dry mouth, and night sweats); C: decrease-static (pain and depression); D: decrease-increase (anorexia and dyspnea); E: static-decrease (aggression); and F: gradually decrease (anxiety). These six symptom patterns can be divided into two categories on the basis of the relative severity of symptoms between one week after admission and two days before death. The first category included patterns A, C, E and F, and the symptoms improved with palliative care. However, the symptoms in the second category (patterns B and D), which were associated with the anorexia-cachexia syndrome and dyspnea, did not show improvement. As symptom management is an essential component of palliative care, holistic care, which encompasses physical, psychosocial and spiritual aspects, represents a rational approach for the relief of these incurable symptoms at the end stage of life for these patients.

The effect of horticultural therapy on the quality of life of palliative care patients.

PubMed

Lai, Claudia Kam-Yuk; Lau, Carmen Ka-Yan; Kan, Wai Yin; Lam, Wai Man; Fung, Connie Yuen Yee

2017-01-01

Palliative care patients experience a variety of needs and perceive their quality of life as being only fair. This study adopted a single-group repeated-measure design to investigate the effect of horticultural therapy on the quality of life of palliative care patients using the Quality of Life Concern in End of Life Questionnaire. Significant differences in the domains of "existential distress" and "health care concern" were observed immediately postintervention and at 4 weeks postintervention, respectively. No other significant differences were seen in the other domains or in the total mean score of the outcome measure.

[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.

[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.

Current Status of Palliative Care, Education, and Research

PubMed Central

Grant, Marcia; Elk, Ronit; Ferrell, Betty; Morrison, R. Sean; von Gunten, Charles F.

2010-01-01

Palliative and end-of-life care is changing in the United States. This dynamic field is improving the care for patients with serious and life-threatening cancer through creation of national guidelines for quality care, multidisciplinary educational offerings, research endeavors, and resources made available to clinicians. Barriers to implementing quality palliative care across cancer populations include a rapidly expanding population of older adults who will need cancer care and a decrease in the workforce available to give care. Ways to integrate current palliative care knowledge into care of patients include multidisciplinary national education and research endeavors, and clinician resources. Acceptance of palliative care as a recognized medical specialty provides a valuable resource for improvement of care. While the evidence base for palliative care is only beginning, national research support has assisted in providing support to build the knowledge foundation for appropriate palliative care. Opportunities are available for clinicians to understand and apply appropriate palliative and end-of-life care to patients with serious and life-threatening cancers. PMID:19729681

Integrating palliative care into the trajectory of cancer care

PubMed Central

Hui, David; Bruera, Eduardo

2016-01-01

Over the past five decades, palliative care has evolved from serving patients at the end of life into a highly specialized discipline focused on delivering supportive care to patients with life-limiting illnesses throughout the disease trajectory. A growing body of evidence is now available to inform the key domains in the practice of palliative care, including symptom management, psychosocial care, communication, decision-making, and end-of-life care. Findings from multiple studies indicate that integrating palliative care early in the disease trajectory can result in improvements in quality of life, symptom control, patient and caregiver satisfaction, quality of end-of-life care, survival, and costs of care. In this narrative Review, we discuss various strategies to integrate oncology and palliative care by optimizing clinical infrastructures, processes, education, and research. The goal of integration is to maximize patient access to palliative care and, ultimately, to improve patient outcomes. We provide a conceptual model for the integration of supportive and/or palliative care with primary and oncological care. We end by discussing how health-care systems and institutions need to tailor integration based on their resources, size, and the level of primary palliative care available. PMID:26598947

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

Derivation of data-driven triggers for palliative care consultation in critically ill patients.

PubMed

Hua, May S; Ma, Xiaoyue; Li, Guohua; Wunsch, Hannah

2018-04-30

To examine the ability of existing triggers for intensive care unit (ICU) palliative care consultation to predict 6-month mortality, and derive new triggers for consultation based on risk factors for 6-month mortality. Retrospective cohort study of NY state residents who received intensive care, 2008-2013. We examined sensitivity and specificity of existing triggers for predicting 6-month mortality and used logistic regression to generate patient subgroups at high-risk for 6-month mortality as potential novel triggers for ICU palliative care consultation. Of 1,019,849 patients, 195,847 (19.2%) died within 6 months of admission. Existing triggers were specific but not sensitive for predicting 6-month mortality, (sensitivity 0.3%-11.1%, specificity 96.5-99.9% for individual triggers). Using logistic regression, patient subgroups with the highest predicted probability of 6-month mortality were older patients admitted with sepsis (age 70-79 probability 49.7%, [49.5-50.0]) or cancer (non-metastatic cancer, age 70-79 probability 51.5%, [51.1-51.9]; metastatic cancer, age 70-79 probability 60.3%, [59.9-60.6]). Sensitivity and specificity of novel triggers ranged from 0.05% to 9.2% and 98.6% to 99.9%, respectively. Existing triggers for palliative care consultation are specific, but insensitive for 6-month mortality. Using a data-driven approach to derive novel triggers may identify subgroups of patients at high-risk of 6-month mortality. Copyright © 2018 Elsevier Inc. All rights reserved.

Cardiopulmonary resuscitation in palliative care cancer patients.

PubMed

Kjørstad, Odd Jarle; Haugen, Dagny Faksvåg

2013-02-19

The criteria for refraining from cardiopulmonary resuscitation in palliative care cancer patients are based on patients' right to refuse treatment and the duty of the treating personnel not to exacerbate their suffering and not to administer futile treatment. When is cardiopulmonary resuscitation futile in these patients? Systematic literature searches were conducted in PubMed for the period 1989-2010 on the results of in-hospital cardiopulmonary resuscitation in advanced cancer patients and on factors that affected the results of CPR when special mention was made of cancer. The searches yielded 333 hits and 18 included articles: four meta-analyses, eight retrospective clinical studies, and six review articles. Cancer patients had a poorer post-CPR survival than non-cancer patients. Survival declined with increasing extent of the cancer disease. Widespread and therapy-resistant cancer disease coupled with a performance status lower than WHO 2 or a PAM score (Pre-Arrest Morbidity Index) of above 8 was regarded as inconsistent with survival after cardiopulmonary resuscitation. Cardiopulmonary resuscitation is futile for in-hospital cancer patients with widespread incurable disease and poor performance status.

Understanding patient requirements for technology systems that support pain management in palliative care services: A qualitative study.

PubMed

Allsop, Matthew J; Taylor, Sally; Bennett, Michael I; Bewick, Bridgette M

2017-11-01

Approaches to pain management using electronic systems are being developed for use in palliative care. This article explores palliative care patients' perspectives on managing and talking about pain, the role of technology in their lives and how technology could support pain management. Face-to-face interviews were used to understand patient needs and concerns to inform how electronic systems are developed. A total of 13 interviews took place with a convenience sample of community-based patients with advanced cancer receiving palliative care through a hospice. Data were analysed using framework analysis. Four meta-themes emerged: Technology could be part of my care; I'm trying to understand what is going on; My pain is ever-changing and difficult to control; and I'm selective about who to tell about pain. Patients described technology as peripheral to existing processes of care. To be relevant, systems may need to take account of the complexity of a patient's pain experience alongside existing relationships with health professionals.

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

[Potential of specialized outpatient palliative care].

PubMed

Geist, M J P; Bardenheuer, H J; Weigand, M A; Frankenhauser, S; Kessler, J

2018-05-01

Palliative care patients with incurable advanced disease suffering from complex symptoms can receive specialized outpatient palliative care in addition to the existing ambulatory care system. Qualified physicians and nurses care for patients and their dependents in cooperation with other professionals. In addition to a 24/7 on-call service for emergencies or acute crises, patients and their dependents are offered regular visits.

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

The process of palliative sedation as viewed by physicians and nurses working in palliative care in Brazil.

PubMed

Spineli, Vívian Marina Calixto Damasceno; Kurashima, Andrea Yamaguchi; De Gutiérrez, Maria Gaby Rivero

2015-10-01

Our aim was to describe the process of palliative sedation from the point of view of physicians and nurses working in palliative care in Brazil. Ours was a descriptive study conducted between May and December of 2011, with purposeful snowball sampling of 32 physicians and 29 nurses working in facilities in Brazil that have adopted the practice of palliative care. The symptoms prioritized for an indication of palliative sedation were dyspnea, delirium, and pain. Some 65.6% of respondents believed that the survival time of a patient in the final phase was not a determining factor for the indication of this measure, and that the patient, family, and healthcare team should participate in the decision-making process. For 42.6% of these professionals, the opinion of the family was the main barrier to an indication of this therapy. The opinion of the physicians and nurses who participated in this study converged with the principal national and international guidelines on palliative sedation. However, even though it is a therapy that has been adopted in palliative care, it remains a controversial practice.

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.

Characteristics and Outcomes of Psychology Referrals in Palliative Care Department.

PubMed

Ann-Yi, Sujin; Bruera, Eduardo; Wu, Jimin; Liu, Diane D; Agosta, Monica; Williams, Janet L; Balankari, Vishidha Reddy; Carmack, Cindy L

2018-06-06

Psychologists can provide unique contributions to interdisciplinary palliative care. Despite research indicating high distress in palliative care cancer patients, little has been reported regarding the feasibility and practice of psychology in this setting. To review the integration of clinical psychology practice in a palliative care department at a major comprehensive cancer center. Retrospective chart review of 1940 unique cancer patients (6451 total patient contacts) referred for psychology services provided by clinical psychologists in palliative care from 9/1/2013 to 2/29/2016. Psychologists provided services to 1644 in-patients (24% of palliative care in-patients) and 296 out-patients (19% of palliative care out-patients). The majority (85%) received services in the in-patient setting. Most patients were female (57%) and white (68%) with a variety of cancer diagnoses. Adjustment disorders were the most prevalent in both settings with significant differences in other DSM-5 diagnoses by service location (p<0.0001). Psychological assessment (86%) and supportive expressive counseling (79%) were the most frequent services provided in the initial consult. Duration of initial visit was significantly longer in out-patient (median=60 minutes) compared to in-patient setting (median=40 minutes) (p<.0001). No significant differences were noted between settings regarding the median number of counseling sessions per patient; however, the majority (70%) only received 1 or 2 sessions. Over time, total patient encounters increased in the in-patient setting (p<0.0001), while session lengths in both settings significantly decreased (p<0.0001). Palliative care psychology services successfully integrated into an interdisciplinary palliative care department and rapidly grew in both in-patient and out-patient settings. Copyright © 2018. Published by Elsevier Inc.

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/.

Integrating palliative care into disease management guidelines.

PubMed

Emanuel, Linda; Alexander, Carla; Arnold, Robert M; Bernstein, Richard; Dart, Richard; Dellasantina, Christopher; Dykstra, Lee; Tulsky, James

2004-12-01

Palliative care should not be reserved for those who are close to dying; as a comprehensive approach to minimizing illness-related suffering, it is appropriate for patients with significant illness from the time of diagnosis on. The American Hospice Foundation Guidelines Committee's initiative aims to provide a practical approach for guideline writers and others to integrate palliative care into disease management and care services whenever it is relevant. A consensus approach was used to design recommendations for upgrading existing disease management and service guidelines to include palliative care. A template is described for identifying stages in disease management guidelines when integration of palliative care is appropriate: (1) Introductory sections to disease management guidelines should include prognosis and other disease consequences; (2) Diagnostic sections should include recommendations for conducting a whole patient assessment; (3) Treatment sections should include discernment of patient goals for care, continuous goal reassessment, palliative care interventions to reduce suffering as needed, and treatment decisions should include discussion of the type of expected improvement. Service guidelines should note the role of interdisciplinary team care as well as palliative care consultative or care services; (4) Sections that conclude the care provided to incurable patients should not end without recommendations on grief and bereavement care, and care during the last hours of living. The American Hospice Foundation Guidelines Committee recommends integration of relevant aspects of palliative care in introductory, diagnostic, treatment, and closing sections of management guidelines for all significant illnesses.

Racial/Ethnic Differences in Inpatient Palliative Care Consultation for Patients With Advanced Cancer

PubMed Central

Sharma, Rashmi K.; Cameron, Kenzie A.; Chmiel, Joan S.; Von Roenn, Jamie H.; Szmuilowicz, Eytan; Prigerson, Holly G.; Penedo, Frank J.

2015-01-01

Purpose Inpatient palliative care consultation (IPCC) may help address barriers that limit the use of hospice and the receipt of symptom-focused care for racial/ethnic minorities, yet little is known about disparities in the rates of IPCC. We evaluated the association between race/ethnicity and rates of IPCC for patients with advanced cancer. Patients and Methods Patients with metastatic cancer who were hospitalized between January 1, 2009, and December 31, 2010, at an urban academic medical center participated in the study. Patient-level multivariable logistic regression was used to evaluate the association between race/ethnicity and IPCC. Results A total of 6,288 patients (69% non-Hispanic white, 19% African American, and 6% Hispanic) were eligible. Of these patients, 16% of whites, 22% of African Americans, and 20% of Hispanics had an IPCC (overall P < .001). Compared with whites, African Americans had a greater likelihood of receiving an IPCC (odds ratio, 1.21; 95% CI, 1.01 to 1.44), even after adjusting for insurance, hospitalizations, marital status, and illness severity. Among patients who received an IPCC, African Americans had a higher median number of days from IPCC to death compared with whites (25 v 17 days; P = .006), and were more likely than Hispanics (59% v 41%; P = .006), but not whites, to be referred to hospice. Conclusion Inpatient settings may neutralize some racial/ethnic differences in access to hospice and palliative care services; however, irrespective of race/ethnicity, rates of IPCC remain low and occur close to death. Additional research is needed to identify interventions to improve access to palliative care in the hospital for all patients with advanced cancer. PMID:26324373

The Changing Role of Palliative Care in the ICU

PubMed Central

Aslakson, Rebecca A.; Curtis, J. Randall; Nelson, Judith E.

2015-01-01

Objectives Palliative care is an interprofessional specialty as well as an approach to care by all clinicians caring for patients with serious and complex illness. Unlike hospice, palliative care is based not on prognosis but on need and is an essential component of comprehensive care for critically ill patients from the time of ICU admission. In this clinically focused article, we review evidence of opportunities to improve palliative care for critically ill adults, summarize strategies for ICU palliative care improvement, and identify resources to support implementation. Data Sources We searched the MEDLINE database from inception through January 2014. We also searched the Reference Library of The Improving Palliative Care in the ICU Project website sponsored by the National Institutes of Health and the Center to Advance Palliative Care, which is updated monthly. We hand-searched reference lists and author files. Study Selection Selected studies included all English-language articles concerning adult patients using the search terms "intensive care" or "critical care" with "palliative care," "supportive care," "end-of-life care," or "ethics." Data Extraction After examination of peer-reviewed original scientific articles, consensus statements, guidelines, and reviews resulting from our literature search, we made final selections based on author consensus. Data Synthesis Existing evidence is organized to address: 1) opportunities to alleviate physical and emotional symptoms, improve communication, and provide support for patients and families; 2) models and specific interventions for improving ICU palliative care; 3) available resources for ICU palliative care improvement; and 4) ongoing challenges and targets for future research. Key domains of ICU palliative care have been defined and operationalized as measures of quality. There is increasing recognition that effective integration of palliative care during acute and chronic critical illness may help patients and

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.

Integrating palliative care into comprehensive cancer care.

PubMed

Abrahm, Janet L

2012-10-01

While there are operational, financial, and workforce barriers to integrating oncology with palliative care, part of the problem lies in ourselves, not in our systems. First, there is oncologists' "learned helplessness" from years of practice without effective medications to manage symptoms or training in how to handle the tough communication challenges every oncologist faces. Unless they and the fellows they train have had the opportunity to work with a palliative care team, they are unlikely to be fully aware of what palliative care has to offer to their patients at the time of diagnosis, during active therapy, or after developing advanced disease, or may believe that, "I already do that." The second barrier to better integration is the compassion fatigue many oncologists develop from caring for so many years for patients who, despite the oncologists' best efforts, suffer and die. The cumulative grief oncologists experience may go unnamed and unacknowledged, contributing to this compassion fatigue and burnout, both of which inhibit the integration of oncology and palliative care. Solutions include training fellows and practicing oncologists in palliative care skills (eg, in symptom management, psychological disorders, communication), preventing and treating compassion fatigue, and enhancing collaboration with palliative care specialists in caring for patients with refractory distress at any stage of disease. As more oncologists develop these skills, process their grief, and recognize the breadth of additional expertise offered by their palliative care colleagues, palliative care will become integrated into comprehensive cancer care.

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

Perceptions of family members of palliative medicine and hospice patients who experienced music therapy.

PubMed

Gallagher, Lisa M; Lagman, Ruth; Bates, Debbie; Edsall, Melissa; Eden, Patricia; Janaitis, Jessica; Rybicki, Lisa

2017-06-01

Evidence shows that music therapy aids in symptom management and improves quality of life for palliative medicine and hospice patients. The majority of previous studies have addressed patient needs, while only a few addressed the needs of family members. The primary purpose of this study was to understand family members' perceptions of music therapy experienced by a relative in palliative medicine or hospice. Patient self-reported scales and music therapist assessment of change were also investigated. Patients scored their symptoms (pain, anxiety, depression, shortness of breath, and mood) before and after music therapy sessions. One family member present during the session assessed perceived effect on the patient's pain, anxiety, depression, shortness of breath, stress level, restlessness, comfort level, mood, and quality of life. The effect on family member's stress level, quality of life, and mood and helpfulness of the music therapy session for the patient and self were studied. Recommendations about future patient participation in music therapy and qualitative comments were also solicited. Fifty family member/patient dyads participated in the study. Family member perceptions were positive, with 82% of responders indicating improvement for self and patient in stress, mood, and quality of life; 80% rating the session as extremely helpful; and 100% of 49 recommending further music therapy sessions for the patient. Patients reported statistically significant improvement in pain, depression, distress, and mood scores. Family members of patients in palliative medicine and hospice settings reported an immediate positive impact of music therapy on the patient and on themselves. More research needs to be conducted to better understand the benefits of music therapy for family members.

Distress Due to Prognostic Uncertainty in Palliative Care: Frequency, Distribution, and Outcomes among Hospitalized Patients with Advanced Cancer.

PubMed

Gramling, Robert; Stanek, Susan; Han, Paul K J; Duberstein, Paul; Quill, Tim E; Temel, Jennifer S; Alexander, Stewart C; Anderson, Wendy G; Ladwig, Susan; Norton, Sally A

2018-03-01

Prognostic uncertainty is common in advanced cancer and frequently addressed during palliative care consultation, yet we know little about its impact on quality of life (QOL). We describe the prevalence and distribution of distress due to prognostic uncertainty among hospitalized patients with advanced cancer before palliative care consultation. We evaluate the association between this type of distress and overall QOL before and after palliative care consultation. Observational cohort study. Hospitalized patients with advanced cancer who receive a palliative care consultation at two geographically distant academic medical centers. At the time of enrollment, before palliative care consultation, we asked participants: "Over the past two days, how much have you been bothered by uncertainty about what to expect from the course of your illness?" (Not at all/Slightly/Moderately/Quite a Bit/Extremely). We defined responses of "Quite a bit" and "Extremely" to be indicative of substantial distress. Two hundred thirty-six participants completed the baseline assessment. Seventy-seven percent reported being at least moderately bothered by prognostic uncertainty and half reported substantial distress. Compared with others, those who were distressed by prognostic uncertainty (118/236) reported poorer overall QOL before palliative care consultation (mean QOL 3.8 out of 10 vs. 5.3 out of 10, p = < 0.001) and greater improvement in QOL following consultation (Adjusted difference in mean QOL change = 1.1; 95% confidence interval = 0.2, 2.0). Prognostic uncertainty is a prevalent source of distress among hospitalized patients with advanced cancer at the time of initial palliative care consultation. Distress from prognostic uncertainty is associated with lower levels of preconsultation QOL and with greater pre-post consultation improvement in the QOL.

Interventions for healthcare professionals, organizations and patients to enhance quality of life for people diagnosed with palliative esophagogastric cancer: a systematic review.

PubMed

Cowley, Alison; Bath-Hextall, Fiona; Cooper, Joanne

2017-03-01

Esophagogastric (EG) cancer is the fifth most common malignancy, and its incidence is increasing. The disease is fast paced, and five-year survival rates are poor. Treatment with palliative intent is provided for the majority of patients but there remains a lack of empirical evidence into the most effective service models to support EG cancer patients. The overall objective of this quantitative systematic review was to establish best practice in relation to interventions targeted at healthcare professionals or the structures in which healthcare professionals deliver care (i.e. models of care and practice) and patients (diagnosed with palliative EG cancer) to enhance the quality of life for people diagnosed with palliative EG cancer. The current review considered studies that included patients diagnosed with palliative EG cancer and any health professionals involved in the delivery of palliative care to this patient group in a hospital, home or community setting. The current review considered studies that evaluated any intervention or combination of intervention strategies aimed at healthcare professionals, organizations or patients to improve quality of life for people diagnosed with palliative EG cancer. The current review considered both experimental and epidemiological study designs. Studies were excluded that evaluated: screening programs, pharmacology alone, palliative oncology and palliative endoscopy. The primary outcome measure was objectively measured quality of life. A three-step search strategy was utilized. Sixteen databases were searched for papers from the year 2000 onward and followed by hand searching of reference lists. Methodological quality was not assessed as no articles were found that met the inclusion criteria. Data extraction was not possible as no articles were found that met the inclusion criteria. It was not possible to complete data synthesis as no articles were found that met the inclusion criteria. Comprehensive searching and study

Patient-centered family meetings in palliative care: a quality improvement project to explore a new model of family meetings with patients and families at the end of life.

PubMed

Sanderson, Christine R; Cahill, Philippa J; Phillips, Jane L; Johnson, Anne; Lobb, Elizabeth A

2017-12-01

Family meetings in palliative care can enhance communication with family members and identify unmet needs. However, the patient's voice may not be heard. This pre and post-test quality improvement project was conducted from 2013-2014 and investigated a patient-centered family meeting, which is a different approach to palliative care family meetings, to determine its feasibility and acceptability for patients, family and the palliative care team. Newly admitted patients to an Australian in-patient specialist palliative care unit were invited to ask anyone they wished to join them in a meeting with the palliative care team and to identify issues they wished to discuss. Consenting inpatients were interviewed shortly after admission; participated in a family meeting and re-interviewed 2-3 days after the meeting. Family members provided feedback at the end of the meeting. A focus group was held with staff for feedback on this new approach for family meetings. Meetings were observed, documented and thematically analyzed. Thirty-one newly admitted patients were approached to participate in a family meeting. Eighty-four percent had family meetings and the majority (96%) was attended by the patient. Thematic analysis revealed 69% of patient-centered meetings raised end-of-life concerns and 54% were "family-focused". Patient-centered family meetings in palliative care were shown to be feasible and acceptable for staff, patients and family members. Many patients and families spontaneously shared end-of-life concerns. A patient-centered approach to family meetings that includes active patient involvement may provide additional and valued opportunities for patients and families to: express mutual concerns, deliver messages of comfort and appreciation, and prepare for death. Further investigation of this approach, including families' bereavement outcomes, is warranted.

Siblings caring for and about pediatric palliative care patients.

PubMed

Gaab, Erin M; Owens, Glynn R; MacLeod, Roderick D

2014-01-01

The experiences of young people who have siblings with life-limiting illnesses are not well understood. The study proposed to identify the concerns of siblings of pediatric palliative care (PPC) patients. Semistructured interviews were administered to participants and analyzed using qualitative inductive thematic analysis. Study subjects were 18 siblings of PPC patients aged 9 to 22 living in the Auckland area. The siblings of PPC patients held concerns about their siblings' impending death and desires to be involved in their lives and care. Siblings may benefit from opportunities to be involved in conversations about mortality and the care of their ill sibling. They are able to express their concerns and help provide care to PPC patients.

Defining High-Quality Palliative Care in Oncology Practice: An American Society of Clinical Oncology/American Academy of Hospice and Palliative Medicine Guidance Statement.

PubMed

Bickel, Kathleen E; McNiff, Kristen; Buss, Mary K; Kamal, Arif; Lupu, Dale; Abernethy, Amy P; Broder, Michael S; Shapiro, Charles L; Acheson, Anupama Kurup; Malin, Jennifer; Evans, Tracey; Krzyzanowska, Monika K

2016-09-01

Integrated into routine oncology care, palliative care can improve symptom burden, quality of life, and patient and caregiver satisfaction. However, not all oncology practices have access to specialist palliative medicine. This project endeavored to define what constitutes high-quality primary palliative care as delivered by medical oncology practices. An expert steering committee outlined 966 palliative care service items, in nine domains, each describing a candidate element of primary palliative care delivery for patients with advanced cancer or high symptom burden. Using modified Delphi methodology, 31 multidisciplinary panelists rated each service item on three constructs: importance, feasibility, and scope within medical oncology practice. Panelists endorsed the highest proportion of palliative care service items in the domains of End-of-Life Care (81%); Communication and Shared Decision Making (79%); and Advance Care Planning (78%). The lowest proportions were in Spiritual and Cultural Assessment and Management (35%) and Psychosocial Assessment and Management (39%). In the largest domain, Symptom Assessment and Management, there was consensus that all symptoms should be assessed and managed at a basic level, with more comprehensive management for common symptoms such as nausea, vomiting, diarrhea, dyspnea, and pain. Within the Appropriate Palliative Care and Hospice Referral domain, there was consensus that oncology practices should be able to describe the difference between palliative care and hospice to patients and refer patients appropriately. This statement describes the elements comprising high-quality primary palliative care for patients with advanced cancer or high symptom burden, as delivered by oncology practices. Oncology providers wishing to enhance palliative care delivery may find this information useful to inform operational changes and quality improvement efforts. Copyright © 2016 by American Society of Clinical Oncology.

Palliative care for adolescents and young adults with cancer

PubMed Central

Rosenberg, Abby R; Wolfe, Joanne

2017-01-01

Adolescents and young adults (AYAs) with cancer represent a unique and challenging group of patients with distinct developmental and psychosocial needs that may be unrecognized or unmet during their cancer experience. Palliative care refers to the total care of a patient, regardless of his or her disease status, and aims to improve quality of life by controlling symptoms and alleviating physical, social, psychological, and spiritual suffering. Integrating palliative care into standard oncology practice for AYAs is therefore valuable, if not imperative, in improving their overall cancer experience. In this review, we aimed to describe the scope, benefits, and challenges of palliative care for AYA oncology patients. We provide a broad impression of the existing literature describing or investigating palliative care in this population. Put together, the evidence suggests that palliative care is not only needed, but can also be critically beneficial to patients, families, and health care professionals alike. As we increase public and professional awareness of the needs and applications of palliative care for AYA patients with cancer, we will ultimately enable better psychosocial outcomes of the AYA patients and their larger communities. PMID:21523753

Racial/Ethnic Differences in Inpatient Palliative Care Consultation for Patients With Advanced Cancer.

PubMed

Sharma, Rashmi K; Cameron, Kenzie A; Chmiel, Joan S; Von Roenn, Jamie H; Szmuilowicz, Eytan; Prigerson, Holly G; Penedo, Frank J

2015-11-10

Inpatient palliative care consultation (IPCC) may help address barriers that limit the use of hospice and the receipt of symptom-focused care for racial/ethnic minorities, yet little is known about disparities in the rates of IPCC. We evaluated the association between race/ethnicity and rates of IPCC for patients with advanced cancer. Patients with metastatic cancer who were hospitalized between January 1, 2009, and December 31, 2010, at an urban academic medical center participated in the study. Patient-level multivariable logistic regression was used to evaluate the association between race/ethnicity and IPCC. A total of 6,288 patients (69% non-Hispanic white, 19% African American, and 6% Hispanic) were eligible. Of these patients, 16% of whites, 22% of African Americans, and 20% of Hispanics had an IPCC (overall P < .001). Compared with whites, African Americans had a greater likelihood of receiving an IPCC (odds ratio, 1.21; 95% CI, 1.01 to 1.44), even after adjusting for insurance, hospitalizations, marital status, and illness severity. Among patients who received an IPCC, African Americans had a higher median number of days from IPCC to death compared with whites (25 v 17 days; P = .006), and were more likely than Hispanics (59% v 41%; P = .006), but not whites, to be referred to hospice. Inpatient settings may neutralize some racial/ethnic differences in access to hospice and palliative care services; however, irrespective of race/ethnicity, rates of IPCC remain low and occur close to death. Additional research is needed to identify interventions to improve access to palliative care in the hospital for all patients with advanced cancer. © 2015 by American Society of Clinical Oncology.

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.

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

Home Palliative Care for Patients with Advanced Chronic Kidney Disease: Preliminary Results

PubMed Central

Teruel, José L.; Rexach, Lourdes; Burguera, Victor; Gomis, Antonio; Fernandez-Lucas, Milagros; Rivera, Maite; Diaz, Alicia; Collazo, Sergio; Liaño, Fernando

2015-01-01

Healthcare for patients with advanced chronic kidney disease (ACKD) on conservative treatment very often poses healthcare problems that are difficult to solve. At the end of 2011, we began a program based on the care and monitoring of these patients by Primary Care Teams. ACKD patients who opted for conservative treatment were offered the chance to be cared for mainly at home by the Primary Care doctor and nurse, under the coordination of the Palliative Care Unit and the Nephrology Department. During 2012, 2013, and 2014, 76 patients received treatment in this program (mean age: 81 years; mean Charlson age-comorbidity index: 10, and mean glomerular filtration rate: 12.4 mL/min/1.73 m2). The median patient follow-up time (until death or until 31 December 2014) was 165 days. During this period, 51% of patients did not have to visit the hospital’s emergency department and 58% did not require hospitalization. Forty-eight of the 76 patients died after a median time of 135 days in the program; 24 (50%) died at home. Our experience indicates that with the support of the Palliative Care Unit and the Nephrology Department, ACKD patients who are not dialysis candidates may be monitored at home by Primary Care Teams. PMID:27417813

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

Dying in Palliative Care Units and in Hospital: A Comparison of the Quality of Life of Terminal Cancer Patients.

ERIC Educational Resources Information Center

Viney, Linda L.; And Others

1994-01-01

Compared quality of life of terminal cancer patients (n=182) in two palliative care units with that of those in general hospital. Patients in specialized palliative care units were found to differ from those dying in hospital, showing less indirectly expressed anger but more positive feelings. They also reported more anxiety about death but less…

When there are no good choices: illuminating the borderland between proportionate palliative sedation and palliative sedation to unconsciousness.

PubMed

Reid, Thomas T; Demme, Richard A; Quill, Timothy E

2011-01-01

Despite state-of-the-art palliative care, some patients will require proportionate palliative sedation as a last-resort option to relieve intolerable suffering at the end of life. In this practice, progressively increasing amounts of sedation are provided until the target suffering is sufficiently relieved. Uncertainty and debate arise when this practice approaches palliative sedation to unconsciousness (PSU), especially when unconsciousness is specifically intended or when the target symptoms are more existential than physical. We constructed a case series designed to highlight some of the common approaches and challenges associated with PSU and the more aggressive end of the spectrum of proportionate palliative sedation as retrospectively identified by palliative care consultants over the past 5 years from a busy inpatient palliative care service at a tertiary medical center in Rochester (NY, USA). Ten cases were identified as challenging by the palliative care attendings, of which four were selected for presentation for illustrative purposes because they touched on central issues including loss of capacity, the role of existential suffering, the complexity of clinical intention, the role of an institutional policy and use of anesthetics as sedative agents. Two other cases were selected focusing on responses to two special situations: a request for PSU that was rejected; and anticipatory planning for total sedation in the future. Although relatively rare, PSU and more aggressive end-of-the-spectrum proportionate palliative sedation represent responses to some of the most challenging cases faced by palliative care clinicians. These complex cases clearly require open communication and collaboration among caregivers, patients and family. Knowing how to identify these circumstances, and how to approach these interventions of last resort are critical skills for practitioners who take care of patients at the end of life.

Effect of nutritional support on terminally ill patients with cancer in a palliative care unit.

PubMed

Amano, Koji; Morita, Tatsuya; Baba, Mika; Kawasaki, Muneyoshi; Nakajima, Shinichiro; Uemura, Minako; Kobayashi, Yuka; Hori, Moeko; Wakayama, Hiroshi

2013-11-01

The role of nutritional support on terminally ill patients with cancer in a palliative care unit has not been clarified. A total of 63 patients were retrospectively investigated; the patients receiving individualized nutritional support (intervention group [n = 22]) were compared to the others (control group [n = 41]). The intervention group received individualized nutritional support. There were no significant differences in the characteristics of patients between the groups. The prevalence of bedsores was significantly lower in the intervention group (14% vs 46%, P = .012). The prevalence of edema and the use of antibiotic therapies tended to be lower in the intervention group than in the control group (36% vs 54%, P = .19; 14% vs 27%, P = .34, respectively). Some terminally ill patients with cancer in a palliative care unit might benefit from nutritional support.

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.

Drug therapy for symptoms associated with anxiety in adult palliative care patients.

PubMed

Salt, Susan; Mulvaney, Caroline A; Preston, Nancy J

2017-05-18

This is an update of a Cochrane Review first published in 2004 (Issue 1) and previously updated in 2012 (Issue 10). Anxiety is common in palliative care patients. It can be a natural response to the complex uncertainty of having a life-limiting illness or impending death, but it may represent a clinically significant issue in its own right. To assess the effectiveness of drug therapy for treating symptoms of anxiety in adults with a progressive life-limiting illness who are thought to be in their last year of life. We ran the searches for this update to May 2016. We searched the CENTRAL, MEDLINE (Ovid), Embase (Ovid), CINAHL (EBSCO), PsychLIT (Silver Platter) and PsycINFO (Ovid). We searched seven trials registers and seven pharmaceutical industry trials registers. We handsearched the conference abstracts of the European Association of Palliative Care. Randomised controlled trials which examined the effect of drug therapy for the treatment of symptoms of anxiety in adult palliative care patients, that is, people with a known progressive life-limiting illness that is no longer responsive to curative treatment, including advanced heart, respiratory and neurological diseases (including dementia). Comparator treatments included placebo; another drug therapy or different dose schedule; or a non-drug intervention such as counselling, cognitive behaviour therapies or relaxation therapies. Two review authors independently screened titles and abstracts to identify potentially relevant papers for inclusion in the review. We sought full-text reports for all papers retained at this stage and two reviews authors independently assessed these for inclusion in the review. We planned to assess risk of bias and extract data including information on adverse events. We planned to assess the evidence using GRADE and to create a 'Summary of findings' table. In this update, we identified 707 potentially relevant papers and of these we sought the full-text reports of 10 papers. On

Effects of a programme of interventions on regional comprehensive palliative care for patients with cancer: a mixed-methods study.

PubMed

Morita, Tatsuya; Miyashita, Mitsunori; Yamagishi, Akemi; Akiyama, Miki; Akizuki, Nobuya; Hirai, Kei; Imura, Chizuru; Kato, Masashi; Kizawa, Yoshiyuki; Shirahige, Yutaka; Yamaguchi, Takuhiro; Eguchi, Kenji

2013-06-01

Improvement of palliative care is an important public health issue, but knowledge about how to deliver palliative care throughout a region remains inadequate. We used surveys and in-depth interviews to assess changes in the quality of palliative care after regional interventions and to gain insights for improvement of palliative care at a regional level. In this mixed-methods study, a comprehensive programme of interventions for regional palliative care for patients with cancer was implemented from April 1, 2008, to March 31, 2011 in Tsuruoka, Kashiwa, Hamamatsu, and Nagasaki in Japan. Interventions included education, specialist support, and networking. We surveyed patients, bereaved family members, physicians, and nurses before and after the interventions were introduced. We also did qualitative interviews with health-care professionals after the interventions were introduced. Primary endpoints were numbers of home deaths, coverage of specialist services, and patient-reported and family-reported qualities of care. This trial is registered with UMIN Clinical Trial Registry, Japan (UMIN000001274). 859 patients, 1110 bereaved family members, 911 physicians, and 2378 nurses provided analysable preintervention surveys; 857 patients, 1137 bereaved family members, 706 physicians, and 2236 nurses provided analysable postintervention surveys. Proportions of home deaths increased significantly, from 348 of 5147 (6.76%) before the intervention programme to 581 of 5546 (10.48%) after the intervention programme (p<0.0001). Furthermore, 194 of 221 (87.78%) family members of patients who died at home answered that these patients had wanted to die at home. The ratio of patients who received palliative care services to all patients who died of cancer increased significantly (from 0.31 to 0.50; p<0.0001). The patient-reported (effect size 0.14; adjusted p=0.0027) and family-reported (0.23; p<0.0001) qualities of care were significantly better after interventions than before

Patients' experiences of care and support at home after a family member's participation in an intervention during palliative care.

PubMed

Norinder, Maria; Goliath, Ida; Alvariza, Anette

2017-06-01

Patients who receive palliative home care are in need of support from family members, who take on great responsibility related to caregiving but who often feel unprepared for this task. Increasing numbers of interventions aimed at supporting family members in palliative care have been described and evaluated. It is not known whether and how these interventions actually affect the care or support provided to a patient, even though it has been suggested that family members would be likely to provide better care and support and thus allow for positive experiences for patients. However, this has not been studied from the perspective of the patients themselves. The objective of our study was to explore patients' experiences of care and support at home after family members' participation in a psychoeducational intervention during palliative care. Our study took a qualitative approach, and interviews were conducted with 11 patients whose family members had participated in a psychoeducational intervention during palliative home care. The interviews were analyzed employing interpretive description. Patients' experiences were represented by three themes: "safe at home," "facilitated and more honest communication," and "feeling like a unit of care." Patients felt that their needs were better met and that family members became more confident at home without risking their own health. Patients felt relieved when family members were given the opportunity to talk and reflect with others and hoped that the intervention would contribute to more honest communications between themselves and their family members. Further, it was of great importance to patients that family members receive attention from and be confirmed and supported by healthcare professionals. Our findings show how an intervention targeted at family members during palliative home care also benefits the patients.

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

Improving palliative care through effective communication.

PubMed

Wallace, P

2001-02-01

Effective communication in palliative care is instrumental in the development of the therapeutic relationship that should exist between patients and nurses, and the importance of it is well recognized by nurses working in this specialist practice area. This article examines the reason behind the need for effective communication, identifies systems of communication and explores the influence and value of contemporary communication theories and models in palliative care. It recommends that palliative care nurses develop a framework that will facilitate and give structure to the interview process with the aim of alleviating anxieties, encouraging situational control and promoting quality of life for patients.

[Importance of Anesthesiologists in the Work of a Palliative Care Team].

PubMed

Hozumi, Jun; Sumitani, Masahiko

2016-03-01

World Health Organization has proposed that palliative medicine should be applied early in the course of the malignant diseases. Regrettably, however, palliative care has been usually provided to patients with the advanced stage of cancer, as terminal care. Recently, palliative medicine begins at the time when patients are diagnosed with cancer. In response to changes in clinical settings of palliative medicine, anesthesiologists, with substantial experience in interdisciplinary pain management, can utilize their advantages in providing palliative medicine to cancer patients: 1) use of opioid analgesics; 2) considering the biopsychosocial model of pain; 3) helping patients live as actively as possible until death; and 4) helping the family cope with the patient's illness and their own bereavement.

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

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.

Art therapy for terminal cancer patients in a hospice palliative care unit in Taiwan.

PubMed

Lin, Ming-Hwai; Moh, Shwu-Lan; Kuo, Yu-Cheng; Wu, Pin-Yuan; Lin, Chiung-Ling; Tsai, Mei-Hui; Chen, Tzeng-Ji; Hwang, Shinn-Jang

2012-03-01

Even though terminal cancer patients receive help from a hospice palliative care team, they have to suffer the pressure of death with deteriorating conditions. This study aims to evaluate the effect of art therapy for these terminal cancer patients. The patients involved were terminal cancer patients who were under the care of team members, which included physicians, nurses, social workers, clergy, art therapists, and volunteers in a hospice palliative care unit in Taiwan. The art therapy in our study took the form of visual fine art appreciation and hands-on painting. The effects of the art therapy were evaluated according to patients' feelings, cognitions, and behaviors. There were 177 patients (105 males and 72 females; mean age: 65.4 ±15.8 years) in the study. Each patient received a mean of 2.9 ± 2.0 sessions of the art therapy and produced a mean of 1.8 ± 2.6 pieces of art. During the therapy, most patients described their feelings well, and created art works attentively. Patients expressed these feelings through image appreciation and hands-on painting, among which the landscape was the most common scene in their art. After the therapy, the mean score of patients' artistic expressions (one point to each category: perception of beauty, art appreciation, creativity, hands-on artwork, and the engagement of creating artwork regularly) was 4.0 ± 0.7, significantly higher than the score before therapy (2.2 ± 1.4, p < 0.05). During the therapy, 70% of patients felt much or very much relaxed in their emotional state and 53.1% of patients felt much or very much better physically. Terminal cancer patients in a hospice palliative care unit in Taiwan may benefit from art therapy through visual art appreciation and hands-on creative artwork.

Availability of Dutch General Practitioners for After-Hours Palliative Care.

PubMed

Plat, Fredrik M; Peters, Yvonne A S; Giesen, Paul; Smits, Marleen

2018-01-01

Continuity of care is important for palliative patients in their end of life. In the Netherlands, after-hours primary care for palliative patients is either provided by large-scale general practitioner (GP) cooperatives or GPs choose to give palliative care by themselves while they are not on duty. To examine the availability of, perceived problems by, and attitude of Dutch GPs regarding providing palliative care for their own patients outside office hours. Cross-sectional observational study among 1772 GPs from 10 Dutch regions. Online questionnaire among GPs affiliated with 10 GP cooperatives. Five hundred twenty-four (29.6%) eligible questionnaires were returned. Of the GPs, 60.8% were personally available outside office hours for their own palliative patients on their own private cell phone and performed home visits if needed. In 33.0%, GPs were willing to make home visits in private time instigated by the GP cooperative and 26.8% were only accessible for telephone consultation by the GP cooperative. In 12.2%, the GP delegated after-hours palliative care completely to the GP cooperative. The GPs predominantly reported "time pressure" problems (17.3%) as a barrier and 61.7% stated that after-hours palliative care is the responsibility of the own GP. The large majority of Dutch GPs is personally available for telephone consultation and/or willing to provide palliative care for their own patients outside office hours. For the future, it is important to maintain the willingness of GPs to remain personally available for their palliative patients.

[Psychiatry and palliative care, collaboration for the benefit of the patient].

PubMed

Regard, Lionel

2018-01-01

As palliative care units continue to develop, the provision of end-of-life care for patients with a chronic mental illness needs to be addressed. Aside from the somatic comorbidities to which these patients are particularly exposed and in view of the specificity of psychiatric treatment, the forms of end-of-life support for a patient with schizophrenia are described here, based on the experience of a psychiatric unit in the Var region. Copyright © 2017 Elsevier Masson SAS. All rights reserved.

Home-Based Palliative Care Program Relieves Chronic Pain in Kerala, India: Success Realized Through Patient, Family Narratives.

PubMed

Ajjarapu, Aparna Sai; Broderick, Ann

2018-06-14

An estimated 1.5 billion people across the globe live with chronic pain, and an estimated 61 million people worldwide experience unrelieved serious health-related suffering. One-sixth of the global population lives in India, where approximately 10 million people endure unrelieved serious health-related suffering. The state of Kerala is home to Pallium India, one of the most sophisticated palliative care programs in the country. This private organization in Trivandrum provides palliative and hospice care to underresourced populations and emphasizes holistic pain treatment. The current project features the pain stories of six patients who received treatment from Pallium India. Basic patient demographic information was collected, and a Pallium India staff member who was fluent in Malayalam and English asked questions about each patient's pain experience. Pain narratives illustrate the substantial impact of Pallium India's home visit program and the role of total pain assessment in delivering high-quality palliative care.

Effectiveness of palliative care services: A population-based study of end-of-life care for cancer patients.

PubMed

De Palma, Rossana; Fortuna, Daniela; Hegarty, Sarah E; Louis, Daniel Z; Melotti, Rita Maria; Moro, Maria Luisa

2018-06-01

Multiple studies demonstrate substantial utilization of acute hospital care and, potentially excessive, intensive medical and surgical treatments at the end-of-life. To evaluate the relationship between the use of home and facility-based hospice palliative care for patients dying with cancer and service utilization at the end of life. Retrospective, population-level study using administrative databases. The effect of palliative care was analyzed between coarsened exact matched cohorts and evaluated through a conditional logistic regression model. The study was conducted on the cohort of 34,357 patients, resident in Emilia-Romagna Region, Italy, admitted to hospital with a diagnosis of metastatic or poor-prognosis cancer during the 6 months before death between January 2013 and December 2015. Patients who received palliative care experienced significantly lower rates of all indicators of aggressive care such as hospital admission (odds ratio (OR) = 0.05, 95% confidence interval (CI): 0.04-0.06), emergency department visits (OR = 0.23, 95% CI: 0.21-0.25), intensive care unit stays (OR = 0.29, 95% CI: 0.26-0.32), major operating room procedures (OR = 0.22, 95% CI: 0.21-0.24), and lower in-hospital death (OR = 0.11, 95% CI: 0.10-0.11). This cohort had significantly higher rates of opiate prescriptions (OR = 1.27, 95% CI: 1.21-1.33) ( p < 0.01 for all comparisons). Use of palliative care at the end of life for cancer patients is associated with a reduction of the use of high-cost, intensive services. Future research is necessary to evaluate the impact of increasing use of palliative care services on other health outcomes. Administrative databases linked at the patient level are a useful data source for assessment of care at the end of life.

Effectiveness of the palliative care ‘Availability, Current issues and Anticipation’ (ACA) communication training programme for general practitioners on patient outcomes: A controlled trial

PubMed Central

Blankenstein, Annette H; Schweitzer, Bart PM; Knol, Dirk L; van der Horst, Henriëtte E; Aaronson, Neil K; Deliens, Luc

2014-01-01

Background: Although communicating effectively with patients receiving palliative care can be difficult, it may contribute to maintaining or enhancing patients’ quality of life. Little is known about the effect of training general practitioners in palliative care–specific communication. We hypothesized that palliative care patients of general practitioners exposed to the ‘Availability, Current issues and Anticipation’ communication training programme would report better outcomes than patients of control general practitioners. Aim: To evaluate the effectiveness of the Availability, Current issues and Anticipation training programme for general practitioners on patient-reported outcomes. Design: In a controlled trial, general practitioners followed the Availability, Current issues and Anticipation programme or were part of the control group. Patients receiving palliative care of participating general practitioners completed the Palliative Care Outcome Scale, the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core 15 Palliative, the Rest & Peace Scale, the Patient Satisfaction Questionnaire–III and the Availability, Current issues and Anticipation Scale, at baseline and 12 months follow-up. We analysed differences between groups using linear mixed models. Trial registration: ISRCTN56722368. Setting/participants: General practitioners who attended a 2-year Palliative Care Training Course in the Netherlands. Results: Questionnaire data were available for 145 patients (89 in intervention and 56 in control group). We found no significant differences over time between the intervention and control groups in any of the five outcome measures. Ceiling effects were observed for the Rest & Peace Scale, Patient Satisfaction Questionnaire–III and Availability, Current issues and Anticipation Scale. Conclusion: General practitioner participation in the Availability, Current issues and Anticipation training programme did not have

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.

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.

Patterns of care in palliative radiotherapy: a population-based study.

PubMed

Murphy, James D; Nelson, Lorene M; Chang, Daniel T; Mell, Loren K; Le, Quynh-Thu

2013-09-01

Approximately one half of the radiotherapy (RT) prescribed in the United States is delivered with palliative intent. The purpose of this study was to investigate the patterns of delivery of palliative RT across the United States. Using the Surveillance, Epidemiology, and End Results-Medicare linked database, 51,610 patients were identified with incident stage IV breast, prostate, lung, or colorectal cancer diagnosed between 2000 and 2007 and observed through 2009. Multivariate logistic regression determined predictors of palliative RT. Forty-one percent of the study population received palliative RT, including 53% of patients with lung cancer, followed by those with breast (42%), prostate (40%), and colorectal cancers (12%). Multivariate analysis revealed that older patients (P<.001) and those with higher Charlson comorbidity scores (P<.001) were less likely to receive palliative RT. Black patients with prostate cancer were 20% less likely (P<.001), and black patients with colorectal cancer were 28% less likely (P<.001), than white patients to receive palliative RT. Among those treated with RT, 23% of patients with lung cancer died within 2 weeks of completing treatment, followed by those with colorectal (12%), breast (11%), and prostate cancers (8%). In addition to tumor site, significant predictors (P<.05) of death within 2 weeks of receiving RT included increased age, increased comorbidity, and male sex. Inequality in the receipt of palliative RT exists among the elderly and patients with comorbid conditions and varies with race. In addition, a significant number of patients die shortly after receiving RT. Understanding these patterns of care, along with further research into the underlying causes, will improve access and quality of palliative RT.

Comfort experience in palliative care: a phenomenological study.

PubMed

Coelho, Adriana; Parola, Vitor; Escobar-Bravo, Miguel; Apóstolo, João

2016-08-02

Palliative care aims to provide maximum comfort to the patient. However it is unknown what factors facilitate or hinder the experience of comfort, from the perspective of inpatients of palliative care units. This lack of knowledge hinders the development of comfort interventions adjusted to these patients. The aim of this research is to describe the comfort and discomfort experienced by inpatients at palliative care units. A phenomenological descriptive study was undertaken. Ten inpatients were recruited from a Spanish palliative care unit and seven from a Portuguese palliative care unit. Data were collected using individual interviews and analysed following the method of Giorgi. Four themes reflect the essence of the lived experience: The Palliative Care as a response to the patient's needs with advanced disease, attempt to naturalize advanced disease, confrontation with their own vulnerability, openness to the spiritual dimension. Informants revealed that they experience comfort through humanized care, differentiated environment, symptomatic control, hope and relationships. The discomfort emerges from the losses and powerlessness against their situation. Even if such findings may seem intuitive, documenting them is essential because it invites us to reflect on our convictions about what it means to be comfortable for these patients, and allows incorporating this information in the design of focused interventions to maximize the comfort experience.

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.

Feeling Heard & Understood in the Hospital Environment: Benchmarking Communication Quality Among Patients with Advanced Cancer Before and After Palliative Care Consultation.

PubMed

Ingersoll, Luke T; Saeed, Fahad; Ladwig, Susan; Norton, Sally A; Anderson, Wendy; Alexander, Stewart C; Gramling, Robert

2018-05-02

Maximizing value in palliative care requires continued development and standardization of communication quality indicators. To describe the basic epidemiology of a newly-adopted patient-centered communication quality indicator for hospitalized palliative care patie9nts with advanced cancer. Cross-sectional analysis of 207 advanced cancer patients who received palliative care consultation at two medical centers in the United States. Participants completed the Heard & Understood quality indicator immediately before and the day following the initial palliative care consultation: "Over the past two days ["24 hours" for the post-consultation version], how much have you felt heard and understood by the doctors, nurses and hospital staff? Completely/Quite a Bit/Moderately/Slightly/Not at All". We categorized "Completely" as indicating ideal quality. Approximately one-third indicated ideal Heard & Understood quality before palliative care consultation. Age, financial security, emotional distress, preferences for comfort-longevity tradeoffs at end-of-life, and prognosis expectations were associated with pre-consultation quality. Among those with less-than-ideal quality at baseline, 56% rated feeling more Heard & Understood the day following palliative care consultation. The greatest pre-post improvement was among people who had unformed end-of-life treatment preferences or who reported having "no idea" about their prognosis at baseline. Most patients felt incompletely heard and understood at the time of referral to palliative care consultation and more than half improved following consultation. Feeling heard and understood is an important quality indicator sensitive to interventions to improve care and key variations in the patient experience. Copyright © 2018. Published by Elsevier Inc.

What influences the willingness of community physicians to provide palliative care for patients with terminal cancer? Evidence from a nationwide survey.

PubMed

Peng, Jen-Kuei; Chiu, Tai-Yuan; Hu, Wen-Yu; Lin, Cheng-Chieh; Chen, Ching-Yu; Hung, Shou-Hung

2013-03-01

Community physicians have a vital role in delivering palliative care, yet their willingness and factors that influence its provision have rarely been explored. Our aims were to identify the willingness of community physicians to provide palliative care for patients with terminal cancer and to investigate the factors that influence their willingness to provide such care. Through a structured questionnaire, this nationwide study surveyed 708 community physicians who were potential pilots to provide palliative care. Four hundred and ten valid questionnaires (58.0%) were retrieved and analysed. The majority of respondents expressed a willingness (92.4%) to provide palliative care if they encountered patients with terminal cancer. However, they would limit their services to consultation (83.4%) and referral (86.8%), and were less likely to see patients and prescribe medicine (62.0%), to provide phone follow-ups (45.6%), to provide home visits (42.2%) or to offer bereavement care for the family (35.1%). The results of stepwise logistic regression analysis for the willingness to provide home visits showed that 'less perception of barriers', 'family medicine specialist' and 'older than 50 years' significantly predicted higher willingness, while 'female' predicted lower willingness. There was no significant association between the willingness and the knowledge score. Community physicians' beliefs and experience in palliative care rather than their knowledge influence their willingness to provide palliative care for patients with terminal cancer. Only through active participation in the real-world clinical setting and active health policy administration can community physicians overcome obstacles to providing palliative care.

A team approach in palliative care: enhancing outcomes.

PubMed

Schrader, Susan L; Horner, Arlene; Eidsness, LuAnn; Young, Sandy; Wright, Chris; Robinson, Michael

2002-07-01

While most Americans envision a "good death" as one occurring quickly and painlessly at home surrounded by loved ones, many people do not die in this fashion. Palliative care focuses on holistic treatment of patients whose disease is not responsive to curative treatment, and strives to improve quality of life for patients and families at end-of-life (EOL). This hospital-based study examines the extent to which a palliative care consultant team makes a difference in EOL for patients and families. Data were collected from a convenience sample of 50 hospitalized patients referred to an interdisciplinary palliative care consulting team at a South Dakota tertiary hospital during 2001. Various palliative care interventions were introduced during the course of hospitalization, and data were collected two days later to see if quality of life had improved. Statistically significant improvements were found in pain levels, non-pain symptom management, numerous psychosocial measures of quality of life, change in code status, and perceptions of communication and treatment during hospitalization. The study demonstrates that consultations with a palliative care team are beneficial and enhance the EOL experience for patients and families.

[Difficulties in communication with parents of pediatric cancer patients during the transition to palliative care].

PubMed

Nyirő, Judit; Hauser, Péter; Zörgő, Szilvia; Hegedűs, Katalin

2017-07-01

Adequate communication by medical personnel is especially important at certain points during the treatment of childhood cancer patients. To investigate the timing and manner of communication with parents concerning the introduction of palliative care in pediatric oncology. Structured interviews, containing 14 questions, were carried out with physicians working in pediatric oncology (n = 22). Codes were generated inductively with the aid of Atlas.ti 6.0 software. Interviews show a tendency of a one-step transition to palliative care following curative therapy. Another expert is usually involved in communication, most likely a psychologist. Regarding communication, there are expressions utilized or avoided, such as expressing clarity, self-defense and empathy. The communication of death and dying was the most contradictory. This was the first investigation regarding communication in pediatric palliative care in Hungary. Our results show that a modern perspective of palliative communication is present, but necessitates more time to become entrenched. Orv Hetil. 2017; 158(30): 1175-1181.

Co-creating possibilities for patients in palliative care to reach vital goals--a multiple case study of home-care nursing encounters.

PubMed

Bergdahl, Elisabeth; Benzein, Eva; Ternestedt, Britt-Marie; Elmberger, Eva; Andershed, Birgitta

2013-12-01

The patient's home is a common setting for palliative care. This means that we need to understand current palliative care philosophy and how its goals can be realized in home-care nursing encounters (HCNEs) between the nurse, patient and patient's relatives. The existing research on this topic describes both a negative and a positive perspective. There has, however, been a reliance on interview and descriptive methods in this context. The aim of this study was to explore planned HCNEs in palliative care. The design was a multiple case study based on observations. The analysis includes a descriptive and an explanation building phase. The results show that planned palliative HCNEs can be described as a process of co-creating possibilities for the patient to reach vital goals through shared knowledge in a warm and caring atmosphere, based on good caring relations. However, in some HCNEs, co-creation did not occur: Wishes and needs were discouraged or made impossible and vital goals were not reached for the patients or their relatives. Further research is needed to understand why. The co-creative process presented in this article can be seen as a concretization of the palliative care ideal of working with a person-centered approach. © 2013 John Wiley & Sons Ltd.

Phase Angle of Bioelectrical Impedance Analysis as Prognostic Factor in Palliative Care Patients at the National Cancer Institute in Mexico.

PubMed

Pérez Camargo, Dana A; Allende Pérez, Silvia R; Rivera Franco, Mónica M; Álvarez Licona, Nelson E; Urbalejo Ceniceros, Víctor I; Figueroa Baldenegro, Lilian E

2017-01-01

Patients with advanced cancer often experience symptoms of disease and treatment that contribute to distress such as weight loss, which is present in up to 85% of cancer patients. Palliative care in these patients focuses on care aimed at improving quality of life. Phase angle (PA) is obtained by bioelectric impedance analysis (BIA) and is associated with cellular function. It is considered a reliable marker of malnutrition. A low PA may suggest deterioration of the cell membrane, which in palliative patients may result in a short-term survival. The aim of this study was to associate PA and survival in palliative patients of the National Cancer Institute of Mexico. We included 452 patients (women, 56.4%); the average PA was 4.0°. The most frequent disease was gastric cancer (39.2%). Mean body mass index (BMI) was 22.84. The average survival of patients with PA ≤ 4° was 86 days, while in the group with PA > 4°, it was 163 days (P > 0.0001). PA showed significant positive correlation with survival time and BMI. Our results corroborate the reliability of PA in Mexican population, as an indicator of survival in palliative care patients compared to the reported literature in other countries.

Improving the Quality of End-of-Life Care in Pediatric Oncology Patients Through the Early Implementation of Palliative Care.

PubMed

Ranallo, Lauren

Providing end-of-life care to children with cancer is most ideally achieved by initiating palliative care at the time of diagnosis, advocating for supportive care throughout the treatment trajectory, and implementing hospice care during the terminal phase. The guiding principles behind offering palliative care to pediatric oncology patients are the prioritization of providing holistic care and management of disease-based symptoms. Pediatric hematology-oncology nurses and clinicians have a unique responsibility to support the patient and family unit and foster a sense of hope, while also preparing the family for the prognosis and a challenging treatment trajectory that could result in the child's death. In order to alleviate potential suffering the child may experience, there needs to be an emphasis on supportive care and symptom management. There are barriers to implementing palliative care for children with cancer, including the need to clarify the palliative care philosophy, parental acknowledgement and acceptance of a child's disease and uncertain future, nursing awareness of services, perception of availability, and a shortage of research guidance. It is important for nurses and clinicians to have a clear understanding of the fundamentals of palliative and end-of-life care for pediatric oncology patients to receive the best care possible.

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.

Clinical aspects of palliative care in advanced Parkinson’s disease

PubMed Central

2012-01-01

Parkinson's disease (PD) is one of the most common neurodegenerative disorders of the elderly population. Few therapeutic options are available for patients with PD requiring palliative care. Treatment of the early stages of PD is entirely different from later stages. During the later stages, the palliative care model is introduced to provide the patient with comfort and support. Early palliative care in PD requires minimization of dyskinesias and decreasing occurrence of motor and non-motor off times in an effort to maximize independent motor function. In the later stages, the focus of treatment shifts to treating the predominant non-motor symptoms and having a more supportive and palliative nature. The purpose of this review is to provide a summary of the palliative care management issues and palliative care management options of end-stage PD patients. PMID:23098090

The WHO collaborating centre for public health palliative care programs: an innovative approach of palliative care development.

PubMed

Ela, Sara; Espinosa, Jose; Martínez-Muñoz, Marisa; Lasmarías, Cristina; Beas, Elba; Mateo-Ortega, Dolors; Novellas, Anna; Gómez-Batiste, Xavier

2014-04-01

The designation of the Catalan Institute of Oncology (Barcelona, Spain) as World Health Organization (WHO) Collaborating Centre for Public Health Palliative Care Programmes (WHOCC-ICO) in February 2008 turns the institution into the first ever center of international reference in regards to palliative care implementation from a public health perspective. The center aims to provide support to countries willing to develop palliative care programs, to identify models of success, to support WHO's policies, and to generate and spread evidence on palliative care. This article describes the WHOCC-ICO's contribution in the implementation of public health palliative care programs and services. The center's main features and future actions are emphasized. At the end of the initial four-year designation period, the organization evaluates the task done to reach its objectives. Such global assessment would take forward the quality of the institution, and generate a revision of its terms of reference for the next designation period. Based on new evidence, the center has recently decided to expand its scope by adopting a community-wide chronic care approach which moves beyond cancer and focuses on the early identification of patients with any chronic disease in need of palliative care. Moreover, the center advocates the development of comprehensive models of care that address patients' psychosocial needs. This center's new work plan includes additional significant innovations, such as the startup of the first chair of palliative care in Spain. Such a whole new approach responds to the main challenges of current palliative care.

Opioid errors in inpatient palliative care services: a retrospective review.

PubMed

Heneka, Nicole; Shaw, Tim; Rowett, Debra; Lapkin, Samuel; Phillips, Jane L

2018-06-01

Opioids are a high-risk medicine frequently used to manage palliative patients' cancer-related pain and other symptoms. Despite the high volume of opioid use in inpatient palliative care services, and the potential for patient harm, few studies have focused on opioid errors in this population. To (i) identify the number of opioid errors reported by inpatient palliative care services, (ii) identify reported opioid error characteristics and (iii) determine the impact of opioid errors on palliative patient outcomes. A 24-month retrospective review of opioid errors reported in three inpatient palliative care services in one Australian state. Of the 55 opioid errors identified, 84% reached the patient. Most errors involved morphine (35%) or hydromorphone (29%). Opioid administration errors accounted for 76% of reported opioid errors, largely due to omitted dose (33%) or wrong dose (24%) errors. Patients were more likely to receive a lower dose of opioid than ordered as a direct result of an opioid error (57%), with errors adversely impacting pain and/or symptom management in 42% of patients. Half (53%) of the affected patients required additional treatment and/or care as a direct consequence of the opioid error. This retrospective review has provided valuable insights into the patterns and impact of opioid errors in inpatient palliative care services. Iatrogenic harm related to opioid underdosing errors contributed to palliative patients' unrelieved pain. Better understanding the factors that contribute to opioid errors and the role of safety culture in the palliative care service context warrants further investigation. © 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.

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.

Effects of Different Palliative Jaundice Reducing Methods on Immunologic Functions in Patients with Advanced Malignant Obstructive Jaundice.

PubMed

Tang, Kun; Sui, Lu-Lu; Xu, Gang; Zhang, Tong; Liu, Qiang; Liu, Xiao-Fang

2017-08-01

This study aimed to investigate the effects of three treatment methods on the immunological function of patients with advanced malignant obstructive jaundice (MOJ). Patients with advanced MOJ were randomly divided into three groups according to biliary drainage methods. Detection of levels of multi-indices were investigated in different time periods. After drainage, the levels of complement 3 (C3) and complement 4 (C4) were increased. Forteen days post-operation, the levels of immunoglobulin G (IgG), immunoglobulin A (IgA) and immunoglobulin M (IgM) in the group undergoing palliative surgery decreased significantly compared to those in both percutaneous transhepatic cholangio drainage (PTCD) and endoscopic retrograde biliary drainage (ERBD) groups. The level of serum endotoxin in the group undergoing palliative surgery decreased gradually. Palliative surgery for reducing jaundice is superior to PTCD and ERBD in improving immune function of patients with MOJ. Copyright© 2017, International Institute of Anticancer Research (Dr. George J. Delinasios), 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.

Commissioning of specialist palliative care services in England.

PubMed

Lancaster, Harriet; Finlay, Ilora; Downman, Maxwell; Dumas, James

2018-03-01

Some failures in end-of-life care have been attributed to inconsistent provision of palliative care across England. We aimed to explore the variation in commissioning of services by Clinical Commissioning Groups (CCGs) using a data collection exercise. We sent a Freedom of Information request in the form of an open questionnaire to all 209 CCGs in England to assess their commissioning of palliative and end-of-life care services, mainly focused on the provision of specialist palliative care services. 29 CCGs provided information about the number of patients with some form of palliative care needs in their population. For specialist palliative care services, CCGs allocated budgets ranging from £51.83 to £2329.19 per patient per annum. 163 CCGs (77.90%) currently commission 7-day admission to their specialist palliative care beds. 82.84% of CCGs commission 7-day specialist palliative care services in patients' own homes and out-of-hours services rely heavily on hospice provision. 64 CCGs (31.37%) commission pain control teams, the majority of whom only operate in regular working hours. 68.14% of CCGs reported commissioning palliative care education of any sort for healthcare professionals and 44.85% of CCGs had no plans to update or review their palliative care services. The most important finding from this exercise is that the information CCGs hold about their population and services is not standardised. However, information based on data that are more objective, for example, population and total budget for palliative care, demonstrate wide variations in commissioning. 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/.

Palliative Medicine and Decision Science: The Critical Need for a Shared Agenda To Foster Informed Patient Choice in Serious Illness

PubMed Central

Kryworuchko, Jennifer; Matlock, Dan D.; Volandes, Angelo E.

2011-01-01

Abstract Assisting patients and their families in complex decision making is a foundational skill in palliative care; however, palliative care clinicians and scientists have just begun to establish an evidence base for best practice in assisting patients and families in complex decision making. Decision scientists aim to understand and clarify the concepts and techniques of shared decision making (SDM), decision support, and informed patient choice in order to ensure that patient and family perspectives shape their health care experience. Patients with serious illness and their families are faced with myriad complex decisions over the course of illness and as death approaches. If patients lose capacity, then surrogate decision makers are cast into the decision-making role. The fields of palliative care and decision science have grown in parallel. There is much to be gained in advancing the practices of complex decision making in serious illness through increased collaboration. The purpose of this article is to use a case study to highlight the broad range of difficult decisions, issues, and opportunities imposed by a life-limiting illness in order to illustrate how collaboration and a joint research agenda between palliative care and decision science researchers, theorists, and clinicians might guide best practices for patients and their families. PMID:21895453

Prevalence, incidence and associated factors of pressure ulcers in home palliative care patients: A retrospective chart review.

PubMed

Artico, Marco; Dante, Angelo; D'Angelo, Daniela; Lamarca, Luciano; Mastroianni, Chiara; Petitti, Tommasangelo; Piredda, Michela; De Marinis, Maria Grazia

2018-01-01

Terminally ill patients are at high risk of pressure ulcers, which have a negative impact on quality of life. Data about pressure ulcers' prevalence, incidence and associated factors are largely insufficient. To document the point prevalence at admission and the cumulative incidence of pressure ulcers in terminally ill patients admitted to an Italian home palliative care unit, and to analyse the patients' and caregivers' characteristics associated with their occurrence. Retrospective chart review. Patients ( n = 574) with a life expectancy ⩽6 months admitted to a palliative home care service were included in this study. The prevalence and incidence rates were 13.1% and 13.0%, respectively. The logistic regression models showed body mass index ( p < 0.001), Braden score at risk ( p < 0.001), Karnofsky Performance Scale index <30 ( p < 0.001), patients' female gender, patients' age >70 and >1 caregiver at home as the dichotomous variables predictors of presenting with a pressure ulcer at time of admission and during home palliative care. The notable pressure ulcers' incidence and prevalence rates suggest the need to include this issue among the main outcomes to pursue during home palliative care. The accuracy of body mass index, Braden Scale and Karnofsky Performance Scale in predicting the pressure ulcers risk is confirmed. Therefore, they appear as essential tools, in combination with nurses' clinical judgment, for a structured approach to pressure ulcers prevention. Further research is needed to explore the home caregivers' characteristics and attitudes associated with the occurrence of pressure ulcers and the relations between their strategies for pressure ulcer prevention and gender-related patient's needs.

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.

The Experiences of Well-Being of Palliative Care Patients in Malaysia: A Thematic Analysis.

PubMed

Beng, Tan Seng; Chin, Loh Ee; Guan, Ng Chong; Ann, Yee Hway; Wu, Cathie; Kuan, Wong Sook; Jane, Lim Ee; Khee, Saw Shier; Meng, Christopher Boey Chiong

2015-08-01

A qualitative study was conducted with semistructured interviews to explore the experiences of well-being in 15 adult palliative care inpatients of University Malaya Medical Center, Kuala Lumpur, Malaysia. The results were thematically analyzed. Six basic themes were generated (1) positive attitude, (2) positive cognitions, (3) positive emotions, (4) positive engagement, (5) positive relationships, and (6) positive circumstances. The Seeds Model was conceptualized from the analysis. This model may inform the development of interventions in the enhancement of well-being of palliative care patients. © The Author(s) 2014.

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.

High-Risk Palliative Care Patients' Knowledge and Attitudes about Hereditary Cancer Testing and DNA Banking.

PubMed

Quillin, John M; Emidio, Oluwabunmi; Ma, Brittany; Bailey, Lauryn; Smith, Thomas J; Kang, In Guk; Yu, Brandon J; Owodunni, Oluwafemi Patrick; Abusamaan, Mohammed; Razzak, Rab; Bodurtha, Joann N

2017-12-04

Even at the end of life, testing cancer patients for inherited susceptibility may provide life-saving information to their relatives. Prior research suggests palliative care inpatients have suboptimal understanding of genetic importance, and testing may be underutilized in this clinical setting. These conclusions are based on limited research. This study aimed to estimate genetic testing prevalence among high-risk palliative care patients in a National Cancer Institute-designated comprehensive cancer center. We also aimed to understand these patients' understanding of, and attitudes toward, hereditary cancer testing and DNA banking. Palliative care in-patients with cancer completed structured interviews, and their medical records were reviewed. Among patients at high risk for hereditary cancer, we assessed history of genetic testing/DNA banking; and related knowledge and attitudes. Among 24 high-risk patients, 14 (58.3%) said they/their relatives had genetic testing or they had been referred for a genetics consultation. Of the remaining 10 patients, seven (70%) said they would "probably" or "definitely" get tested. Patients who had not had testing were least concerned about the impact of future testing on their family relationships; two (20%) said they were "extremely concerned" about privacy related to genetic testing. Of patients without prior testing, five (50%) said they had heard or read "a fair amount" about genetic testing. No high-risk patients had banked DNA. Overall, 23 (95.8%) said they had heard or read "almost nothing" or "relatively little" about DNA banking. Written materials and clinician discussion were most preferred ways to learn about genetic testing and DNA banking. Overall, this study demonstrates underutilization of genetics services at the end of life continues to be problematic, despite high patient interest.

The Palliative Care Journey in Kenya and Uganda.

PubMed

Kamonyo, Emmanuel S

2018-02-01

Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other physical, psychosocial, and spiritual problems. This update is aimed at examining palliative care development/achievements and challenges in Kenya and Uganda and the role of various actors in palliative care establishment in the region. It assesses the policy environment, progress in education, access to essential medicines, palliative care implementation efforts, and legal and human rights work. East African nations have huge disease burdens, both communicable and noncommunicable. HIV and cancer are the major causes of mortality in Kenya and Uganda and put huge demands on the health care system and on the country's economies. All these conditions will require palliative care services as the disease burden increases. Unfortunately, for many African countries, accessing palliative care services, including access to pain relief, remains very limited resulting in serious suffering for patients and their families. The interventions in Kenya and Uganda help palliative care organizations engage with their respective governments to ensure that the social and legal barriers impeding access to palliative care services are removed. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Overcoming recruitment challenges in palliative care clinical trials.

PubMed

LeBlanc, Thomas W; Lodato, Jordan E; Currow, David C; Abernethy, Amy P

2013-11-01

Palliative care is increasingly viewed as a necessary component of cancer care, especially for patients with advanced disease. Rigorous clinical trials are thus needed to build the palliative care evidence base, but clinical research-especially participant recruitment-is difficult. Major barriers include (1) patient factors, (2) "gatekeeping," and (3) ethical concerns. Here we discuss an approach to overcoming these barriers, using the Palliative Care Trial (PCT) as a case study. The PCT was a 2 × 2 × 2 factorial randomized controlled trial (RCT) of different service delivery models to improve pain control in the palliative setting. It used a recruitment protocol that fused evidence-based strategies with principles of "social marketing," an approach involving the systematic application of marketing techniques. Main components included (1) an inclusive triage algorithm, (2) information booklets targeting particular stakeholders, (3) a specialized recruitment nurse, and (4) standardization of wording across all study communications. From an eligible pool of 607 patients, the PCT enrolled 461 patients over 26 months. Twenty percent of patients referred to the palliative care service were enrolled (76% of those eligible after screening). Several common barriers were minimized; among those who declined participation, family disinterest was uncommon (5%), as was the perception of burden imposed (4%). Challenges to clinical trial recruitment in palliative care are significant but not insurmountable. A carefully crafted recruitment and retention protocol can be effective. Our experience with designing and deploying a social-marketing-based protocol shows the benefits of such an approach.

Palliative Care Eases Symptoms, Enhances Lives

MedlinePlus

... and more emotional support. Read More "Palliative Care" Articles Increasing the quality of life for patients and families… / Video Tells a Mother's Story of Caring Support / Palliative Care Eases Symptoms, Enhances Lives Spring 2014 Issue: ... Viewers & Players Friends of the National Library of Medicine (FNLM)

Mapping the scope of occupational therapy practice in palliative care: A European Association for Palliative Care cross-sectional survey.

PubMed

Eva, Gail; Morgan, Deidre

2018-05-01

Occupational therapists play an integral role in the care of people with life-limiting illnesses. However, little is known about the scope of occupational therapy service provision in palliative care across Europe and factors influencing service delivery. This study aimed to map the scope of occupational therapy palliative care interventions across Europe and to explore occupational therapists' perceptions of opportunities and challenges when delivering and developing palliative care services. A 49-item online cross-sectional survey comprised of fixed and free text responses was securely hosted via the European Association for Palliative Care website. Survey design, content and recruitment processes were reviewed and formally approved by the European Association for Palliative Care Board of Directors. Descriptive statistics and thematic analysis were used to analyse data. Setting/respondents: Respondents were European occupational therapists whose caseload included palliative care recipients (full-time or part-time). In total, 237 valid responses were analysed. Findings demonstrated a consistency in occupational therapy practice in palliative care between European countries. Clinician time was prioritised towards indirect patient care, with limited involvement in service development, leadership and research. A need for undergraduate and postgraduate education was identified. Organisational expectations and understanding of the scope of the occupational therapy role constrain the delivery of services to support patients and carers. Further development of occupational therapy in palliative care, particularly capacity building in leadership and research activities, is warranted. There is a need for continuing education and awareness raising of the role of occupational therapy in palliative care.

Mapping the scope of occupational therapy practice in palliative care: A European Association for Palliative Care cross-sectional survey

PubMed Central

Eva, Gail; Morgan, Deidre

2018-01-01

Background: Occupational therapists play an integral role in the care of people with life-limiting illnesses. However, little is known about the scope of occupational therapy service provision in palliative care across Europe and factors influencing service delivery. Aim: This study aimed to map the scope of occupational therapy palliative care interventions across Europe and to explore occupational therapists’ perceptions of opportunities and challenges when delivering and developing palliative care services. Design: A 49-item online cross-sectional survey comprised of fixed and free text responses was securely hosted via the European Association for Palliative Care website. Survey design, content and recruitment processes were reviewed and formally approved by the European Association for Palliative Care Board of Directors. Descriptive statistics and thematic analysis were used to analyse data. Setting/respondents: Respondents were European occupational therapists whose caseload included palliative care recipients (full-time or part-time). Results: In total, 237 valid responses were analysed. Findings demonstrated a consistency in occupational therapy practice in palliative care between European countries. Clinician time was prioritised towards indirect patient care, with limited involvement in service development, leadership and research. A need for undergraduate and postgraduate education was identified. Organisational expectations and understanding of the scope of the occupational therapy role constrain the delivery of services to support patients and carers. Conclusion: Further development of occupational therapy in palliative care, particularly capacity building in leadership and research activities, is warranted. There is a need for continuing education and awareness raising of the role of occupational therapy in palliative care. PMID:29756556

Evaluating palliative care needs in Middle Eastern countries.

PubMed

Silbermann, Michael; Fink, Regina M; Min, Sung-Joon; Mancuso, Mary P; Brant, Jeannine; Hajjar, Ramzi; Al-Alfi, Nesreen; Baider, Lea; Turker, Ibrahim; ElShamy, Karima; Ghrayeb, Ibtisam; Al-Jadiry, Mazin; Khader, Khaled; Kav, Sultan; Charalambous, Haris; Uslu, Ruchan; Kebudi, Rejin; Barsela, Gil; Kuruku, Nilgün; Mutafoglu, Kamer; Ozalp-Senel, Gulsin; Oberman, Amitai; Kislev, Livia; Khleif, Mohammad; Keoppi, Neophyta; Nestoros, Sophia; Abdalla, Rasha Fahmi; Rassouli, Maryam; Morag, Amira; Sabar, Ron; Nimri, Omar; Al-Qadire, Mohammad; Al-Khalaileh, Murad; Tayyem, Mona; Doumit, Myrna; Punjwani, Rehana; Rasheed, Osaid; Fallatah, Fatimah; Can, Gulbeyaz; Ahmed, Jamila; Strode, Debbie

2015-01-01

Cancer incidence in Middle Eastern countries, most categorized as low- and middle-income, is predicted to double in the next 10 years, greater than in any other part of the world. While progress has been made in cancer diagnosis/treatment, much remains to be done to improve palliative care for the majority of patients with cancer who present with advanced disease. To determine knowledge, beliefs, barriers, and resources regarding palliative care services in Middle Eastern countries and use findings to inform future educational and training activities. Descriptive survey. Fifteen Middle Eastern countries; convenience sample of 776 nurses (44.3%), physicians (38.3%) and psychosocial, academic, and other health care professionals (17.4%) employed in varied settings. Palliative care needs assessment. Improved pain management services are key facilitators. Top barriers include lack of designated palliative care beds/services, community awareness, staff training, access to hospice services, and personnel/time. The nonexistence of functioning home-based and hospice services leaves families/providers unable to honor patient wishes. Respondents were least satisfied with discussions around advance directives and wish to learn more about palliative care focusing on communication techniques. Populations requiring special consideration comprise: patients with ethnic diversity, language barriers, and low literacy; pediatric and young adults; and the elderly. The majority of Middle Eastern patients with cancer are treated in outlying regions; the community is pivotal and must be incorporated into future plans for developing palliative care services. Promoting palliative care education and certification for physicians and nurses is crucial; home-based and hospice services must be sustained.

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

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.

Islamic theology and the principles of palliative care.

PubMed

Al-Shahri, Mohammad Zafir

2016-12-01

It is well established that provision of palliative care is a human right for the patients and their families going through the suffering associated with a life-threatening illness. The holistic nature of palliative care, dictated by the multifaceted suffering experienced by patients, calls for giving due consideration to the cultural and spiritual background of the target population. Similarly, the paramount impact of Islamic wholeness on Muslims' perceptions, beliefs, and way of living makes it necessary for non-Muslim palliative care professionals who are caring for Muslim patients to increase their awareness about the parts of Islamic theology pertinent to the principles of palliative care. This would include a basic knowledge of the Islamic faith and how Muslims view and cope with the calamity of a life-threatening condition along with the suffering associated with it. Equally important are issues related to the management of symptoms using agents that are normally strictly prohibited by Islamic teachings, including opioids, brain stimulants, and cannabinoids. The current review briefly discusses the Islamic perspectives pertinent to a Muslim patient's journey throughout the palliative care experience, onward to a safe passing, and beyond.

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.

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

Barriers to accessing palliative care for pediatric patients with cancer: A review of the literature.

PubMed

Haines, Emily R; Frost, A Corey; Kane, Heather L; Rokoske, Franziska S

2018-06-01

Although many of the 16,000 children in the United States diagnosed who are with cancer each year could benefit from pediatric palliative care, these services remain underused. Evidence regarding the barriers impeding access to comprehensive palliative care is dispersed in the literature, and evidence specific to pediatric oncology remains particularly sparse. The purpose of the current review was to synthesize the existing literature regarding these barriers and the strategies offered to address them. The authors completed a literature search using the PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL), and Web of Science databases. In total, 71 articles were reviewed. Barriers to accessing pediatric palliative care were categorized according to the 4 levels of a modified socioecological model (ie, barriers related to policy/payment, health systems, organizations, and individuals). Major themes identified at each level included: 1) the lack of consistent and adequate funding mechanisms at the policy/payment level, 2) the lack of pediatric palliative care programs and workforce at the health systems level, 3) difficulties integrating palliative care into existing pediatric oncology care models at the organizational level, and 4) the lack of knowledge about pediatric palliative care, discomfort with talking about death, and cultural differences between providers and patients and their families at the individual level. Recommendations to address each of the barriers identified in the literature are included. Cancer 2018;124:2278-88. © 2018 American Cancer Society. © 2018 American Cancer Society.

Acting as Standardized Patients Enhances Family Medicine Residents' Self-Reported Skills in Palliative Care

ERIC Educational Resources Information Center

Sittikariyakul, Pat; Jaturapatporn, Darin; Kirshen, A. J.

2015-01-01

Recent publications have confirmed the use of standardized patients (SPs) in improving clinical skills and enhancing competency. Little research has studied the benefits residents may themselves gain in palliative care playing the role of SPs. Nineteen Family Medicine residents were recruited as standardized patients (FMR-SPs) for a mandatory…

Outpatient Palliative Care and Aggressiveness of End-of-Life Care in Patients with Metastatic Colorectal Cancer.

PubMed

Lee, Si Won; Jho, Hyun Jung; Baek, Ji Yeon; Shim, Eun Kyung; Kim, Hyun Mi; Ku, Ji Yeon; Nam, Eun Jung; Chang, Yoon-Jung; Choi, Hye Jin; Kim, Sun Young

2018-01-01

Palliative care in outpatient setting has been shown to promote better symptom management and transition to hospice care among patients with advanced cancer. Nevertheless, specialized palliative care is rarely provided at cancer centers in Korea. Herein, we aimed to assess aggressiveness of end-of-life care for patients with metastatic colorectal cancer according to the use of outpatient palliative care (OPC) at a single cancer center in Korea. We performed a retrospective medical record review for 132 patients with metastatic colorectal cancer who died between 2011 and 2014. Fifty patients used OPC (OPC group), while 82 patients did not (non-OPC group). Indicators of aggressiveness of end-of-life care including chemotherapy use, emergency department visits, hospitalization, and utilization of hospice care were analyzed according to the use of OPC. More patients in the OPC group were admitted to hospice than those in the non-OPC group (32% vs 17%, P = .047). The mean of inpatient days within 30 days of death was shorter for the OPC group than the non-OPC group (4.02 days vs 7.77 days, respectively, P = .032). There were no differences in the proportions of patients who received chemotherapy and visited the emergency department within 30 days from death. Among patients with metastatic colorectal cancer, OPC was associated with shorter inpatient days near death and greater hospice utilization. Further prospective studies are needed to evaluate the impact of OPC on end-of-life care in Korea.

The provision of generalist and specialist palliative care for patients with non-malignant respiratory disease in the North and Republic of Ireland: a qualitative study.

PubMed

Veigh, Clare Mc; Reid, Joanne; Larkin, Philip; Porter, Sam; Hudson, Peter

2017-07-11

Previous research and key guidelines have suggested potential models of palliative care for patients with COPD and interstitial lung disease. However, these recommendations are often not effectively implemented in clinical practice and are void of guidance regarding palliative care for patients with bronchiectasis, another form of non-malignant respiratory disease. The aim of this research was to explore generalist and specialist palliative care service provision for people with non-malignant respiratory disease in the North and Republic of Ireland. Qualitative study involving a convenience sample of 17 bereaved carers and 18 healthcare professionals recruited from 2 rural and 2 urban sites on the Island of Ireland. Data collection consisted of semi-structured interviews with carers of patients with COPD, interstitial lung disease or bronchiectasis who had died 3-18 months previously; and 4 focus groups with healthcare professionals. Data analysed using thematic analysis. Findings highlighted the lack of a clear model of holistic care delivery for patients with non-malignant respiratory disease and illuminated the varying levels of palliative care provision this client group experienced. Additionally, ambiguity amongst healthcare professionals regarding prognostication illuminated the importance of the provision of palliative care being based on patient need, not prognosis. This research developed a potential model of palliative care which may help healthcare professionals introduce palliative care, and specialist respiratory care, early in the disease trajectory of non-malignant respiratory disease, whilst also encouraging the involvement of specialist palliative care for complex symptom management. This research provides an important insight into a potential model of palliative care for people with non-malignant respiratory disease, inclusive of bronchiectasis. However, the feasibility of integrating this model into clinical practice requires further exploration.

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.

Palliative treatment of inoperable patients with carcinoma of the cardia region.

PubMed

Seifert, E; Reinhard, A; Lütke, A; Gail, K

1983-02-01

Endoscopic palliative treatment of inoperable patients with carcinoma of the cardia region is superior to surgical procedures that allow the feeding of patients. After dilating the malignant stenosis with an Eder-Puestow dilator, a Celestin or Atkinson tube is inserted endoscopically by means of the Nottingham introducer. In 25 of 26 patients the inserted tube functioned well until the death of the patient for an average of 109 days. Six patients are still alive and one patient has had the tube for almost 3 years. Of the 19 patients who died, 18 retained the tube until they died. The complication rate of the procedure was 11.5% with a 3.8% mortality related to tube insertion.

Palliative sedation: a focus group study on the experiences of relatives.

PubMed

Bruinsma, Sophie; Rietjens, Judith; van der Heide, Agnes

2013-04-01

Most studies that have investigated the practice of palliative sedation have focused on physicians' practices and attitudes. The aim of this study was to explore relatives' experiences with palliative sedation and to gain more insight in positive and negative elements in their evaluation of palliative sedation. Focus groups and individual interviews. Various care settings in the Netherlands. A total of 14 relatives of patients who received palliative sedation until death participated. Most relatives evaluated the provision of palliative sedation of their dying family member positively. Positive experiences were related to: the beneficial impact of palliative sedation on the patient's suffering, the opportunity that was offered to prepare for the patient's death, their involvement in the decision-making and care for the patient, and the pleasant care environment. However, the majority of the relatives were unsatisfied with one or more aspects of how information was being provided for. Some relatives were frustrated about the fact that nurses were not authorized to make decisions about the care for the patient and about the absence of physicians during weekends. None of the relatives mentioned the loss of the ability to communicate with the patient during the sedation and the possibility of "hastening death" as disadvantages of palliative sedation. Relatives tend to evaluate the provision of palliative sedation to their severely suffering family member positively because it contributes to a peaceful dying process. However, relatives indicated discontent with how information was being provided and with the communication in general.

Palliative care for patients with cancer: do patients receive the care they consider important? A survey study.

PubMed

Heins, Marianne; Hofstede, Jolien; Rijken, Mieke; Korevaar, Joke; Donker, Gé; Francke, Anneke

2018-04-17

In many countries, GPs and home care nurses are involved in care for patients with advanced cancer. Given the varied and complex needs of these patients, providing satisfactory care is a major challenge for them. We therefore aimed to study which aspects of care patients, GPs and home care nurses consider important and whether patients receive these aspects. Seventy-two Dutch patients with advanced cancer, 87 GPs and 26 home care nurses rated the importance of support when experiencing symptoms, respect for patients' autonomy and information provision. Patients also rated whether they received these aspects. Questionnaires were based on the CQ index palliative care. Almost all patients rated information provision and respect for their autonomy as important. The majority also rated support when suffering from specific symptoms as important, especially support when in pain. In general, patients received the care they considered important. However, 49% of those who considered it important to receive support when suffering from fatigue and 23% of those who wanted to receive information on the expected course of their illness did not receive this or only did so sometimes. For most patients with advanced cancer, the palliative care that they receive matches what they consider important. Support for patients experiencing fatigue may need more attention. When symptoms are difficult to control, GPs and nurses may still provide emotional support and practical advice. Furthermore, we recommend that GPs discuss patients' need for information about the expected course of their illness.

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.

[Multiprofessional cooperation in palliative care].

PubMed

Falckenberg, Maja

2007-04-01

"Nothing is more powerful than an idea whose time has come." (Victor Hugo) Originally referring to the beginning of the enlightenment (reconnaissance) of the French revolution the transcription of this words regarding to German palliative Care structures would mean a tremendous effort. The meaning of the new idea is a holistic kind of care for patients with a chronic disease at the end of their lives, so that they can die as most self determined as possible at a location of their choice. The special aim of palliative care, the need of interdisciplinary cooperation leading to multidisciplinary solutions is pointed out. The meaning of palliative care team as a team with special communication skills in between the team and with further cooperating partners is described. Communication in palliative care means more than telling facts.

[Providing regular relief; considerations for palliative care in the Netherlands].

PubMed

Crul, B J; van Weel, C

2001-10-20

Over the last few decades the attention devoted to the palliative aspects of medicine, particularly those in hospital care, has declined due to the emphasis on medical technology. In Anglo-Saxon countries a review of this development resulted in structured palliative care that benefited terminally ill patients with a progressive fatal disease, especially cancer patients. Due to increasing national and international criticism of both the practice of euthanasia (assumed to be too liberal) and the lack of attention devoted to structured palliative care in the Netherlands, the Dutch government decided to improve the structure of palliative care. The government's viewpoint is based on the assumption that good palliative care that includes adequate pain control benefits patient care and might eventually lead to fewer requests for euthanasia. The improvements to palliative care should be realised by means of improvements in the structure, training and knowledge. Six academic medical clusters have been designated as Centres for the Development of Palliative Care (Dutch acronym: COPZ) for a 5-year period. Each COPZ must develop the various aspects needed to improve palliative care within the region it serves and ensure that its activities are carefully coordinated with those in the other centres. Research will focus on measuring the efficacy of palliative care as well as ethical and epidemiological aspects. A government committee will assess the appropriateness of the activities undertaken by each of the centres.

Learning to care: medical students' reported value and evaluation of palliative care teaching involving meeting patients and reflective writing.

PubMed

Borgstrom, Erica; Morris, Rachel; Wood, Diana; Cohn, Simon; Barclay, Stephen

2016-11-25

Over recent years there has been an increase in teaching of both palliative care and reflective practice in UK medical schools. The palliative care teaching at the University of Cambridge School of Clinical Medicine is multi-faceted and involves students writing reflective essays after individually meeting patients approaching the end of life during their final year general practice and hospital medicine placements. This paper draws on two studies examining this teaching element to analyse what the students found valuable about it and to comment on the practice of meeting patients and subsequent reflective writing. Two studies have explored students' perceptions of these course components. The first was a thematic analysis of 234 reflective essays from 123 students written in 2007-2008, including examining what students wrote about the exercise itself. The second project involved a semi-structured questionnaire that students completed anonymously; this paper reports on the free text elements of that study [sample size =107]. Since similar themes were found in both studies, the coding structures from each project were compared and combined, enabling triangulation of the findings around what the students found valuable from the palliative care teaching involving meeting patients and reflective writing. Overall, students reported that these components of the palliative care teaching are valuable. Four main themes were identified as aspects that students valued: (1) dedicated time with patients, (2) learning about wider elements of treatment and holistic care, (3) practicing communication skills, and (4) learning about themselves through reflective writing. Some students expressed a dislike for having to formally write a reflective essay. It is possible to arrange for all of the medical students to individually meet at least two patients receiving palliative or end of life care. Students found these encounters valuable and many wrote about the benefit of formally

Early Intervention With Transplantation Recipients to Improve Access to and Knowledge of Palliative Care.

PubMed

Harden, Karen L

2016-08-01

The literature continues to support that patients undergoing hematopoietic stem cell transplantation (HSCT) receive early consultation with palliative care specialists. Nurses can be leaders in this initiative. This quality improvement project was conducted to determine whether patients undergoing HSCT, who were provided an early consultation with palliative care, would report increased knowledge and increased ability to access palliative services. Patients completed a postintervention questionnaire in which the majority of patients reported that they had increased knowledge about palliative care and learned how to access their services. Patient comments were positive about the successful intervention of early palliative care. The palliative care team, however, revealed a different view of the situation, showing that patients were often overwhelmed, anxious, and sometimes did not remember the content of their meetings.

The business of palliative medicine--part 4: Potential impact of an acute-care palliative medicine inpatient unit in a tertiary care cancer center.

PubMed

Walsh, Declan

2004-01-01

In this study, a hematology/oncology computerized discharge database was qualitatively and quantitatively reviewed using an empirical methodology. The goal was to identify potential patients for admission to a planned acute-care, palliative medicine inpatient unit. Patients were identified by the International Classifications of Disease (ICD-9) codes. A large heterogenous population, comprising up to 40 percent of annual discharges from the Hematology/Oncology service, was identified. If management decided to add an acute-care, palliative medicine unit to the hospital, these are the patients who would benefit. The study predicted a significant change in patient profile, acuity, complexity, and resource utilization in current palliative care services. This study technique predicted the actual clinical load of the acute-care unit when it opened and was very helpful in program development. Our model predicted that 695 patients would be admitted to the acute-care palliative medicine unit in the first year of operation; 655 patients were actually admitted during this time.

Haloperidol for the treatment of nausea and vomiting in palliative care patients.

PubMed

Murray-Brown, Fay; Dorman, Saskie

2015-11-02

Nausea and vomiting are common symptoms in patients with terminal, incurable illnesses. Both nausea and vomiting can be distressing. Haloperidol is commonly prescribed to relieve these symptoms. This is an updated version of the original Cochrane review published in Issue 2, 2009, of Haloperidol for the treatment of nausea and vomiting in palliative care patients. To evaluate the efficacy and adverse events associated with the use of haloperidol for the treatment of nausea and vomiting in palliative care patients. For this updated review, we performed updated searches of CENTRAL, EMBASE and MEDLINE in November 2013 and in November 2014. We searched controlled trials registers in March 2015 to identify any ongoing or unpublished trials. We imposed no language restrictions. For the original review, we performed database searching in August 2007, including CENTRAL, MEDLINE, EMBASE, CINAHL and AMED, using relevant search terms and synonyms. Handsearching complemented the electronic searches (using reference lists of included studies, relevant chapters and review articles) for the original review. We considered randomised controlled trials (RCTs) of haloperidol for the treatment of nausea or vomiting, or both, in any setting, for inclusion. The studies had to be conducted with adults receiving palliative care or suffering from an incurable progressive medical condition. We excluded studies where nausea or vomiting, or both, were thought to be secondary to pregnancy or surgery. We imported records from each of the electronic databases into a bibliographic package and merged them into a core database where we inspected titles, keywords and abstracts for relevance. If it was not possible to accept or reject an abstract with certainty, we obtained the full text of the article for further evaluation. The two review authors independently assessed studies in accordance with the inclusion criteria. There were no differences in opinion between the authors with regard to the

In their own words: Patients and families define high-quality palliative care in the intensive care unit*

PubMed Central

Nelson, Judith E.; Puntillo, Kathleen A.; Pronovost, Peter J.; Walker, Amy S.; McAdam, Jennifer L.; Ilaoa, Debra; Penrod, Joan

2011-01-01

Objective Although the majority of hospital deaths occur in the intensive care unit and virtually all critically ill patients and their families have palliative needs, we know little about how patients and families, the most important “stakeholders,” define high-quality intensive care unit palliative care. We conducted this study to obtain their views on important domains of this care. Design Qualitative study using focus groups facilitated by a single physician. Setting A 20-bed general intensive care unit in a 382-bed community hospital in Oklahoma; 24-bed medical–surgical intensive care unit in a 377-bed tertiary, university hospital in urban California; and eight-bed medical intensive care unit in a 311-bed Veterans’ Affairs hospital in a northeastern city. Patients Randomly-selected patients with intensive care unit length of stay ≥5 days in 2007 to 2008 who survived the intensive care unit, families of survivors, and families of patients who died in the intensive care unit. Interventions None. Measurements and Main Results Focus group facilitator used open-ended questions and scripted probes from a written guide. Three investigators independently coded meeting transcripts, achieving consensus on themes. From 48 subjects (15 patients, 33 family members) in nine focus groups across three sites, a shared definition of high-quality intensive care unit palliative care emerged: timely, clear, and compassionate communication by clinicians; clinical decision-making focused on patients’ preferences, goals, and values; patient care maintaining comfort, dignity, and personhood; and family care with open access and proximity to patients, interdisciplinary support in the intensive care unit, and bereavement care for families of patients who died. Participants also endorsed specific processes to operationalize the care they considered important. Conclusions Efforts to improve intensive care unit palliative care quality should focus on domains and processes that

Palliative care nurses' views on euthanasia.

PubMed

Verpoort, Charlotte; Gastmans, Chris; Dierckx de Casterlé, Bernadette

2004-09-01

In debates on euthanasia legalization in Belgium, the voices of nurses were scarcely heard. Yet studies have shown that nurses are involved in the caring process surrounding euthanasia. Consequently, they are in a position to offer valuable ideas about this problem. For this reason, the views of these nurses are important because of their palliative expertise and their daily confrontation with dying patients. The aim of this paper is to report a study of the views of palliative care nurses about euthanasia. A grounded theory approach was chosen, and interviews were carried out with a convenience sample of 12 palliative care nurses in Flanders (Belgium). The data were collected between December 2001 and April 2002. The majority of the nurses were not a priori for or against euthanasia, and their views were largely dependent on the situation. What counted was the degree of suffering and available palliative options. Depending on the situation, we noted both resistance and acceptance towards euthanasia. The underlying arguments for resistance included respect for life and belief in the capabilities of palliative care; arguments underlying acceptance included the quality of life and respect for patient autonomy. The nurses commented that working in palliative care had a considerable influence on one's opinion about euthanasia. In light of the worldwide debate on euthanasia, it is essential to know how nurses, who are confronted with terminally ill patients every day, think about it. Knowledge of these views can also contribute to a realistic and qualified view on euthanasia itself. This can be enlightening to the personal views of caregivers working in a diverse range of care settings.

[Multiprofessional team working in palliative medicine].

PubMed

Osaka, Iwao

2013-04-01

Now, more than ever, palliative medicine has been gaining recognition for its essential role in cancer treatment. Since its beginning, it has emphasized the importance of collaboration among multidisciplinary professionals, valuing a comprehensive and holistic philosophy, addressing a wide range of hopes and suffering that patients and families experience. There are three models (approaches) for the medical teams: multidisciplinary, interdisciplinary, and transdisciplinary. Palliative care teams often choose the interdisciplinary team model, and the teams in the palliative care units may often choose the transdisciplinary team model. Recently, accumulating research has shown the clinical benefits of the interdisciplinary/transdisciplinary approach in palliative care settings. Clarifying appropriate functions and ideal features of physicians in the health care team, and enforcing the suitable team approach will contribute to improve the quality of whole medical practice beyond the framework of "palliative medicine".

The "ARIANNA" Project: An Observational Study on a Model of Early Identification of Patients with Palliative Care Needs through the Integration between Primary Care and Italian Home Palliative Care Units.

PubMed

Scaccabarozzi, Gianlorenzo; Amodio, Emanuele; Pellegrini, Giacomo; Limonta, Fabrizio; Lora Aprile, Pierangelo; Lovaglio, Pietro Giorgio; Peruselli, Carlo; Crippa, Matteo

2018-05-01

The aim of this study was to illustrate the characteristics of patients with palliative care (PC) needs, early identified by general practitioners (GPs), and to analyze their care process in home PC services. Early identification and service integration are key components to providing quality palliative care (PC) services ensuring the best possible service for patients and their families. However, in Italy, PC is often provided only in the last phase of life and for oncological patients, with a fragmented service. Multicenter prospective observational study, lasting in total 18 months, implemented in a sample of Italian Home Palliative Care Units (HPCUs), enrolling and monitoring patients with limited life expectancy, early identified by 94 GPs. The study began on March 1, 2014 and ended on August 31, 2015. Nine hundred thirty-seven patients, out of a total pool of 139,071, were identified by GPs as having a low life expectancy and PC needs. Of these, 556 (59.3%) were nononcological patients. The GPs sent 433 patients to the HPCUs for multidimensional assessment, and 328 (75.8%) were placed in the care of both settings (basic or specialist). For all patients included in the study, both oncological and nononcological patients, there was a high rate of death at home, around 70%. This study highlights how a model based on early identification, multidimensional evaluation, and integration of services can promote adequate PC, also for noncancer patients, with a population-based approach.

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

Team-Based Palliative and End-of-Life Care for Heart Failure

PubMed Central

Fendler, Timothy J.; Swetz, Keith M.; Allen, Larry A.

2015-01-01

SYNOPSIS Clinical practice guidelines endorse the use of palliative care in patients with symptomatic heart failure. Palliative care is no longer seen as “giving up” or “accepting death,” but is now conceptualized as “supportive care” afforded to most patients with chronic, life-limiting illness. However, the optimal content and delivery of palliative care interventions remains unknown and its integration into existing heart failure disease management continues to be a challenge. Therefore, we will comment on the current state of multidisciplinary care for such patients, explore evidence supporting a team-based approach to palliative and end-of-life care for patients with heart failure, and identify high-priority areas for research. Ultimately, patients require a “heart failure medical home”, where various specialties may take a more central role in coordination of patient care at different times in the disease span, sometimes transitioning leadership from primary care to cardiology to palliative care. PMID:26142643

Trajectories of Terminally Ill Patients' Cardiovascular Response to Receptive Music Therapy in Palliative Care.

PubMed

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

2016-08-01

Relaxation interventions are frequently used to promote symptom relief in palliative care settings, but little is known about the underlying mechanisms. The present analysis aimed at examining the psychophysiological pathways of terminally ill patients' cardiovascular response to a live music therapy vs. prerecorded mindfulness exercise. Eighty-four patients of a palliative care unit were randomly assigned to either of the two interventions. Multilevel modeling was used to analyze trajectories of physiological change. Vagally mediated heart rate variability (VM-HRV) and blood volume pulse amplitude (BVP-A) served as indices of autonomic nervous system response. Participants' gender, age, baseline scores, self-rated pain, and assignment to treatment were entered to the models as predictors. Both VM-HRV and BVP-A showed significant linear and quadratic trends over time, as well as substantial heterogeneity among individuals' trajectories. Baseline scores, pain, and treatment significantly accounted for random variation in VM-HRV intercepts. BVP-A levels were significantly higher in women than in men. Moreover, assignment to treatment significantly accounted for differences in the linear slopes of peripheral blood flow. Higher levels of VM-HRV in the music therapy group highlight the importance of a therapeutic relationship for the effectiveness of relaxation interventions in end-of-life care settings. Music therapy caused significantly stronger reductions of vascular sympathetic tone and, therefore, may be indicated in the treatment of pain and stress-related symptoms in palliative care. Initial self-ratings of pain moderated patients' physiological response and need to be taken into account in clinical practice and future theory building. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Palliative Care Teams' Cost-Saving Effect Is Larger For Cancer Patients With Higher Numbers Of Comorbidities.

PubMed

May, Peter; Garrido, Melissa M; Cassel, J Brian; Kelley, Amy S; Meier, Diane E; Normand, Charles; Stefanis, Lee; Smith, Thomas J; Morrison, R Sean

2016-01-01

Patients with multiple serious conditions account for a high proportion of health care spending. Such spending is projected to continue to grow substantially as a result of increased insurance eligibility, the ever-rising cost of care, the continued use of nonbeneficial high-intensity treatments at the end of life, and demographic changes. We evaluated the impact of palliative care consultation on hospital costs for adults with advanced cancer, excluding those with dementia. We found that compared to usual care, the receipt of a palliative care consultation within two days of admission was associated with 22 percent lower costs for patients with a comorbidity score of 2-3 and with 32 percent lower costs for those with a score of 4 or higher. Earlier consultation was also found to be systematically associated with a larger cost-saving effect for all subsamples defined by multimorbidity. Given ongoing workforce shortages, targeting early specialist palliative care to hospitalized patients with advanced cancer and higher numbers of serious concurrent conditions could improve care while complementing strategies to curb the growth of health spending. Project HOPE—The People-to-People Health Foundation, Inc.

Development of a Community-Based Palliative Care Model for Advance Cancer Patients in Public Health Centers in Busan, Korea.

PubMed

Kim, Sook-Nam; Choi, Soon-Ock; Shin, Seong Hoon; Ryu, Ji-Sun; Baik, Jeong-Won

2017-07-01

A feasible palliative care model for advance cancer patients is needed in Korea with its rapidly aging population and corresponding increase in cancer prevalence. This study describes the process involved in the development of a community-based palliative care (CBPC) model implemented originally in a Busan pilot project. The model development included steps I and II of the pilot project, identification of the service types, a survey exploring the community demand for palliative care, construction of an operational infrastructure, and the establishment of a service delivery system. Public health centers (including Busan regional cancer centers, palliative care centers, and social welfare centers) served as the regional hubs in the development of a palliative care model. The palliative care project included the provision of palliative care, establishment of a support system for the operations, improvement of personnel capacity, development of an educational and promotional program, and the establishment of an assessment system to improve quality. The operational infrastructure included a service management team, provision teams, and a support team. The Busan Metropolitan City CBPC model was based on the principles of palliative care as well as the characteristics of public health centers that implemented the community health projects. The potential use of the Busan CBPC model in Korea should be explored further through service evaluations.

Liquid nitrogen spray cryotherapy for dysphagia palliation in patients with inoperable esophageal cancer.

PubMed

Kachaamy, Toufic; Prakash, Ravi; Kundranda, Madappa; Batish, Raman; Weber, Jeffrey; Hendrickson, Scott; Yoder, Leon; Do, Hannah; Magat, Theresa; Nayar, Rajeev; Gupta, Digant; DaSilva, Trisha; Sangal, Ashish; Kothari, Shivangi; Kaul, Vivek; Vashi, Pankaj

2018-05-08

Dysphagia is a debilitating symptom in patients with inoperable esophageal cancer contributing to poor quality of life and worsening nutritional status. The 2 most commonly used palliative modalities for dysphagia are radiation therapy (RT) and esophageal stent placement. However, RT is limited by adverse events (AEs) and total dose, and stent placement has a high rate of AEs including reflux, migration, and chest pain. A relatively new modality of liquid nitrogen endoscopic spray cryotherapy has been described as salvage when other options have been exhausted and when patients are no longer receiving systemic therapy. We evaluated the safety and efficacy of cryotherapy as the primary modality for relieving dysphagia in inoperable esophageal cancer including patients receiving systemic cancer therapy. This is a retrospective multicenter consecutive case series of 49 inoperable esophageal cancer patients undergoing palliative endoscopic cryotherapy at 4 specialized cancer centers from May 2014 to May 2016. The primary outcomes were change in dysphagia scores between pre- and post-cryotherapy and AE. Dysphagia was measured using a 4-point Likert scale: 0, no dysphagia; 1, dysphagia to solids; 2, dysphagia to semi-solids; 3, dysphagia to liquids; 4, dysphagia to saliva. There were 39 males and 10 females with a mean age of 58 years who underwent a total of 120 cryotherapy treatments. The mean dysphagia score improved significantly from 2.4 pre-cryotherapy to 1.7 post-cryotherapy (improvement of 0.7 points; p<0.001). Minor AE were seen in 6/120 (5.0%) cryotherapy treatments (1 intra-procedural and 5 post-procedural). In addition, one patient developed a severe intra-procedural AE of dilation-related perforation whereas another patient developed a benign stricture requiring dilation. This preliminary retrospective study suggests that liquid nitrogen spray cryotherapy may be safe and effective for dysphagia palliation in inoperable esophageal cancer. Large prospective

'Palliative sedation'? A retrospective cohort study on the use and labelling of continuously administered sedatives on a palliative care unit.

PubMed

Schildmann, Eva; Pörnbacher, Sebastian; Kalies, Helen; Bausewein, Claudia

2018-03-01

Sedatives are frequently used towards the end of life. However, there is scarce information when their use is labelled as 'palliative sedation'. To assess the use and labelling of 'continuous administration of sedatives within the last 7 days of life', based on objective operational criteria, on a palliative care unit. Retrospective cohort study, using medical records. Explorative statistical analysis (SPSS 23). Patients who died on a palliative care unit from August 2014 to July 2015. Sedatives recorded were benzodiazepines, levomepromazine, haloperidol ⩾5 mg/day and propofol. Of the 192 patients, 149 (78%) patients received continuous sedatives within the last week of life. The prevalence of delirium/agitation was significantly higher in patients with continuous sedatives compared to those without continuous sedatives at admission to the unit (35% vs 16%, p = 0.02) and on the day before death (58% vs 40%, p = 0.04). The term '(palliative) sedation' was used in the records for 22 of 149 (15%) patients with continuous sedatives. These patients had significantly higher total daily midazolam doses 2 days before death (median (range), 15.0 (6.0-185.0) mg vs 11.5 (1.0-70.0) mg, p = 0.04) and on the day of death (median (range), 19.5 (7.5-240.0) mg vs 12.5 (2.0-65.0) mg, p = 0.01). The dose range was large in both groups. The prevalence of delirium/agitation was associated with the administration of continuous sedatives. There was no consistent pattern regarding labelling the use of continuous sedatives as '(palliative) sedation'. Multicentre mixed-methods research is needed for a better characterization of sedation practices in palliative care.