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.

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.

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.

Does educating patients about the Early Palliative Care Study increase preferences for outpatient palliative cancer care? Findings from Project EMPOWER.

PubMed

Hoerger, Michael; Perry, Laura M; Gramling, Robert; Epstein, Ronald M; Duberstein, Paul R

2017-06-01

Randomized controlled trials, especially the Early Palliative Care Study (Temel et al., 2010), have shown that early outpatient palliative cancer care can improve quality of life for patients with advanced cancer or serious symptoms. However, fear and misconceptions drive avoidance of palliative care. Drawing from an empowerment perspective, we examined whether educating patients about evidence from the Early Palliative Care Study would increase preferences for palliative care. A sample of 598 patients with prostate, breast, lung, colon/rectal, skin, and other cancer diagnoses completed an Internet-mediated experiment using a between-group prepost design. Intervention participants received a summary of the Early Palliative Care Study; controls received no intervention. Participants completed baseline and posttest assessments of preferences of palliative care. Analyses controlled for age, gender, education, cancer type, presence of metastases, time since diagnosis, and baseline preferences. As hypothesized, the intervention had a favorable impact on participants' preferences for outpatient palliative cancer care relative to controls (d = 1.01, p < .001), while controlling for covariates. Intervention participants came to view palliative care as more efficacious (d = 0.79, p < .001) and less scary (d = 0.60, p < .001) and exhibited stronger behavioral intentions to utilize outpatient palliative care if referred (d = 0.60, p < .001). Findings were comparable in patients with metastatic disease, those with less education, and those experiencing financial strain. Educating patients about the Early Palliative Care Study increases preferences for early outpatient palliative care. This research has implications for future studies aimed at improving quality of life in cancer by increasing palliative care utilization. (PsycINFO Database Record (c) 2017 APA, all rights reserved).

Palliative psychiatry for severe persistent mental illness as a new approach to psychiatry? Definition, scope, benefits, and risks.

PubMed

Trachsel, Manuel; Irwin, Scott A; Biller-Andorno, Nikola; Hoff, Paul; Riese, Florian

2016-07-22

As a significant proportion of patients receiving palliative care suffer from states of anxiety, depression, delirium, or other mental symptoms, psychiatry and palliative care already collaborate closely in the palliative care of medical conditions. Despite this well-established involvement of psychiatrists in palliative care, psychiatry does not currently explicitly provide palliative care for patients with mental illness outside the context of terminal medical illness. Based on the WHO definition of palliative care, a, a working definition of palliative psychiatry is proposed. Palliative psychiatry focuses on mental health rather than medical/physical issues. We propose that the beneficiaries of palliative psychiatry are patients with severe persistent mental illness, who are at risk of therapeutic neglect and/or overly aggressive care within current paradigms. These include long-term residential care patients with severe chronic schizophrenia and insufficient quality of life, those with therapy-refractory depressions and repeated suicide attempts, and those with severe long-standing therapy-refractory anorexia nervosa. An explicitly palliative approach within psychiatry has the potential to improve quality of care, person-centredness, outcomes, and autonomy for patients with severe persistent mental illness. The first step towards a palliative psychiatry is to acknowledge those palliative approaches that already exist implicitly in psychiatry. Basic skills for a palliative psychiatry include communication of diagnosis and prognosis, symptom assessment and management, support for advance (mental health) care planning, assessment of caregiver needs, and referral to specialized services. Some of these may already be considered core skills of psychiatrists, but for a truly palliative approach they should be exercised guided by an awareness of the limited functional prognosis and lifespan of patients with severe persistent mental illness.

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.

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.

Palliative care and neurology

PubMed Central

Boersma, Isabel; Miyasaki, Janis; Kutner, Jean

2014-01-01

Palliative care is an approach to the care of patients and families facing progressive and chronic illnesses that focuses on the relief of suffering due to physical symptoms, psychosocial issues, and spiritual distress. As neurologists care for patients with chronic, progressive, life-limiting, and disabling conditions, it is important that they understand and learn to apply the principles of palliative medicine. In this article, we aim to provide a practical starting point in palliative medicine for neurologists by answering the following questions: (1) What is palliative care and what is hospice care? (2) What are the palliative care needs of neurology patients? (3) Do neurology patients have unique palliative care needs? and (4) How can palliative care be integrated into neurology practice? We cover several fundamental palliative care skills relevant to neurologists, including communication of bad news, symptom assessment and management, advance care planning, caregiver assessment, and appropriate referral to hospice and other palliative care services. We conclude by suggesting areas for future educational efforts and research. PMID:24991027

Palliative care and neurology: time for a paradigm shift.

PubMed

Boersma, Isabel; Miyasaki, Janis; Kutner, Jean; Kluger, Benzi

2014-08-05

Palliative care is an approach to the care of patients and families facing progressive and chronic illnesses that focuses on the relief of suffering due to physical symptoms, psychosocial issues, and spiritual distress. As neurologists care for patients with chronic, progressive, life-limiting, and disabling conditions, it is important that they understand and learn to apply the principles of palliative medicine. In this article, we aim to provide a practical starting point in palliative medicine for neurologists by answering the following questions: (1) What is palliative care and what is hospice care? (2) What are the palliative care needs of neurology patients? (3) Do neurology patients have unique palliative care needs? and (4) How can palliative care be integrated into neurology practice? We cover several fundamental palliative care skills relevant to neurologists, including communication of bad news, symptom assessment and management, advance care planning, caregiver assessment, and appropriate referral to hospice and other palliative care services. We conclude by suggesting areas for future educational efforts and research. © 2014 American Academy of Neurology.

Barriers to palliative care in people with chronic obstructive pulmonary disease in home care: A qualitative study of the perspective of professional caregivers.

PubMed

Mousing, Camilla A; Timm, Helle; Lomborg, Kirsten; Kirkevold, Marit

2018-02-01

To examine the experiences with palliative care in people with chronic obstructive pulmonary disease among professional caregivers in a Danish home care setting. Many patients with advanced chronic obstructive pulmonary disease depend on professional caregivers in the primary sector to provide assistance and care. However, chronic obstructive pulmonary disease patients receive no or only very little palliative care compared to patients with cancer although they may have many burdensome symptoms. Qualitative explorative study. In 2013-2014, ten professional caregivers from three districts in a Danish municipality were followed during home visits to patients with chronic obstructive pulmonary disease and individual interviews about palliative care were subsequently conducted. In 2014, 66 professional caregivers, representing eleven home care districts, participated in ten group discussions about palliative care needs in this group of patients. Data were analysed using qualitative descriptive analysis. The study revealed a nonawareness of palliative care for patients with chronic obstructive pulmonary disease among the professional caregivers who expressed vague understanding of palliative care and lack of knowledge about the disease. Organisational barriers, such as lack of time and continuity in patient care, lack of opportunity to discuss palliative care and lack of peer learning were experienced as challenging in the provision of palliative care. Nonawareness and organisational barriers led to difficulties in identifying palliative care needs and reluctance to initiate conversations about palliative care. The findings indicate a need for education, training and reflection among professional caregivers in home care. Also, organisational changes may be needed to reduce the barriers to palliative care. The findings uncovered barriers to palliative care that must be addressed. Targeted educational programmes and organisational changes may increase the ability to identify palliative care needs and initiate and evaluate palliative interventions. © 2017 John Wiley & Sons Ltd.

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

PubMed Central

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

2017-01-01

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

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

PubMed

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

2017-01-01

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

Poverty Reduction in India through Palliative Care: A Pilot Project

PubMed Central

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

2017-01-01

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

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.

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

PubMed Central

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

2017-01-01

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

[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.

[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.

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.

Early Palliative Care-Health services research and implementation of sustainable changes: the study protocol of the EVI project.

PubMed

Meffert, Cornelia; Gaertner, Jan; Seibel, Katharina; Jors, Karin; Bardenheuer, Hubert; Buchheidt, Dieter; Mayer-Steinacker, Regine; Viehrig, Marén; Paul, Christina; Stock, Stephanie; Xander, Carola; Becker, Gerhild

2015-05-29

International medical organizations such as the American Society of Medical Oncology recommend early palliative care as the "gold standard" for palliative care in patients with advanced cancer. Nevertheless, even in Comprehensive Cancer Centers, early palliative care is not yet routine practice. The main goal of the EVI project is to evaluate whether early palliative care can be implemented-in the sense of "putting evidence into practice"-into the everyday clinical practice of Comprehensive Cancer Centers. In addition, we are interested in (1) describing the type of support that patients would like from palliative care, (2) gaining information about the effect of palliative care on patients' quality of life, and (3) understanding the economic burden of palliative care on patients and their families. The EVI project is a multi-center, prospective cohort study with a sequential control group design. The study is a project of the Palliative Care Center of Excellence (KOMPACT) in Baden-Württemberg, Germany, which was recently established to combine the expertise of five academic, specialist palliative care departments. The study is divided into two phases: preliminary phase (months 1-9) and main study phase (months 10-18). In each of all five participating academic Comprehensive Cancer Centers, an experienced palliative care physician will be hired for 18 months. During the preliminary phase, the physician will be allowed time to establish the necessary structures for early palliative care within the Comprehensive Cancer Center. In the main study phase, patients with metastatic cancer will be offered a consultation with the palliative care physician within eight weeks of diagnosis. After the initial consultation, follow-up consultations will be offered as needed. The study is built upon a convergent parallel design. In the quantitative arm, patients will be surveyed in both the preliminary and main study phase at three points in time (baseline, 12 weeks, 24 weeks). Standardized questionnaires will be used to measure patients' quality of life, symptom burden and mood. Using interviews with palliative care physicians, oncologists, department heads, patients and their caregivers, the qualitative arm will explore (1) what factors encourage and hinder the early integration of palliative care into standard oncology care, (2) what support patients and their caregivers would like from palliative care, and (3) what effect palliative care has on the economic disease burden of patients and their families. The study proposed is meant to serve as a catalyzer. Local palliative care teams should be put in position to routinely cooperate with the primary treating department at their respective cancer center. The long-term goal of this project is to create sustainable improvements in the care of patients with incurable cancer. DRKS00006162 ; date of registration: 19/05/2014.

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.

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.

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

PubMed

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

2013-12-01

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

Identified Palliative Care Approach Needs with SPICT in Family Practice: A Preliminary Observational Study.

PubMed

Hamano, Jun; Oishi, Ai; Kizawa, Yoshiyuki

2018-02-09

Identifying patients who require palliative care approach is challenging for family physicians, even though several identification tools have been developed for this purpose. To explore the prevalence and characteristics of family practice patients who need palliative care approach as determined using Supportive and Palliative Care Indicators Tool (SPICT™, April 2015) in Japan. Single-center cross-sectional study. We enrolled all patients ≥65 years of age who visited the chief researcher's outpatient clinic in October 2016. We used Japanese version of SPICT (SPICT-J) to identify patients who need palliative care approach. We assessed patients' backgrounds and whether they had undergone advance care planning with their family physicians. This study included 87 patients (61 females) with a mean age of 79.0 ± 7.4 years. Eight patients (9.2%) were identified as needing palliative care approach. The mean age of patients who needed this approach was 82.3 ± 8.3 years and main underlying conditions were heart/vascular disease (37.5%), dementia/frailty (25.0%), and respiratory disease (12.5%). Only two of eight patients identified as needing palliative care approach had discussed advance care planning with their family physicians. In family practice, 9.2% of outpatients ≥65 years of age were identified as needing palliative care approach. Family physicians should carefully evaluate whether outpatients need palliative care approach.

Increasing Access to Palliative Care Services in the Intensive Care Unit.

PubMed

McCarroll, Caitlin Marie

The Institute of Medicine's report, Dying in America, highlights the critical need for the widespread implementation of palliative care to improve end-of-life care. Approximately 20% of all deaths in America occur during or shortly after an intensive care unit (ICU) admission; therefore, it is important for critical care units to have systems in place to facilitate patient access to palliative care services. The aim of this quality improvement (QI) project was to develop and implement a palliative care screening tool using evidence-based triggers to help increase the proportion of palliative care consultations in the ICU setting. A QI project was designed and implemented in a 14-bed medical-surgical ICU in the southeastern United States using the Plan-Do-Study-Act cycle. A palliative care screening tool was developed by an interdisciplinary team of key stakeholders in the ICU using evidence-based triggers, and staff were educated on the intervention. The proportion of ICU patients who received a palliative care consultation was compared preintervention and postintervention to determine whether the QI project contributed to an increased proportion of palliative care consultations. The proportion of palliative care consultations among patients admitted to the ICU by the pulmonary critical care team increased from 1 of 10 preintervention to 3 of 10 postintervention, resulting in a promising increase in patients receiving palliative care services consistent with evidence-based recommendations. The use of an evidence-based screening tool to trigger palliative care consultation in the ICU setting can aid in increasing the proportion of critical care patients who receive a palliative care referral. The increase in the proportion of palliative care referrals by the pulmonary critical care service warrants expansion of the intervention to include additional medical subspecialists who frequently admit patients in this ICU setting. Further assessment of the intervention is warranted to determine whether the screening tool can aid in increasing palliative care consultations for more patients admitted to the hospital's ICU.

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.

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

Wong, Jonathan; Xu, Beibei; Moores Cancer Center, University of California San Diego, La Jolla, California

Purpose/Objective: Palliative radiation therapy represents an important treatment option among patients with advanced cancer, although research shows decreased use among older patients. This study evaluated age-related patterns of palliative radiation use among an elderly Medicare population. Methods and Materials: We identified 63,221 patients with metastatic lung, breast, prostate, or colorectal cancer diagnosed between 2000 and 2007 from the Surveillance, Epidemiology, and End Results (SEER)-Medicare linked database. Receipt of palliative radiation therapy was extracted from Medicare claims. Multivariate Poisson regression analysis determined residual age-related disparity in the receipt of palliative radiation therapy after controlling for confounding covariates including age-related differences inmore » patient and demographic covariates, length of life, and patient preferences for aggressive cancer therapy. Results: The use of radiation decreased steadily with increasing patient age. Forty-two percent of patients aged 66 to 69 received palliative radiation therapy. Rates of palliative radiation decreased to 38%, 32%, 24%, and 14% among patients aged 70 to 74, 75 to 79, 80 to 84, and over 85, respectively. Multivariate analysis found that confounding covariates attenuated these findings, although the decreased relative rate of palliative radiation therapy among the elderly remained clinically and statistically significant. On multivariate analysis, compared to patients 66 to 69 years old, those aged 70 to 74, 75 to 79, 80 to 84, and over 85 had a 7%, 15%, 25%, and 44% decreased rate of receiving palliative radiation, respectively (all P<.0001). Conclusions: Age disparity with palliative radiation therapy exists among older cancer patients. Further research should strive to identify barriers to palliative radiation among the elderly, and extra effort should be made to give older patients the opportunity to receive this quality of life-enhancing treatment at the end of life.« less

Design of a nationwide survey on palliative care for end-stage heart failure in Japan.

PubMed

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

2018-02-01

The term palliative care has historically been associated with support for individuals with advanced incurable cancer, so cardiologists and cardiac nurses may be unfamiliar with its principles and practice. However, palliative care is now a part of end-stage heart failure management. We conducted the first nationwide survey to investigate the status of palliative care for heart failure in Japan. A self-reported questionnaire was mailed to all Japanese Circulation Society - authorized cardiology training hospitals (n=1004) in August 2016. The response deadline was December 2016. The survey focused on the following topics: basic information about the facility and multidisciplinary team, patient symptoms for palliative care, positive outcomes after providing palliative care, drug therapy as palliative care for patients with heart failure, advance care planning with patients and their families, and impediments to providing palliative care to patients with heart failure. The results of the survey will be reported in detail elsewhere. Current guidelines on palliative care do not specifically address what team members should be involved, what drugs should be used, or when palliative care should be started. This survey collected information to improve the quality of palliative care and provide more specialized palliative care within the limits of resources. Copyright © 2017 Japanese College of Cardiology. Published by Elsevier Ltd. All rights reserved.

The Accuracy of Physicians' Clinical Predictions of Survival in Patients With Advanced Cancer.

PubMed

Amano, Koji; Maeda, Isseki; Shimoyama, Satofumi; Shinjo, Takuya; Shirayama, Hiroto; Yamada, Takeshi; Ono, Shigeki; Yamamoto, Ryo; Yamamoto, Naoki; Shishido, Hideki; Shimizu, Mie; Kawahara, Masanori; Aoki, Shigeru; Demizu, Akira; Goshima, Masahiro; Goto, Keiji; Gyoda, Yasuaki; Hashimoto, Kotaro; Otomo, Sen; Sekimoto, Masako; Shibata, Takemi; Sugimoto, Yuka; Morita, Tatsuya

2015-08-01

Accurate prognoses are needed for patients with advanced cancer. To evaluate the accuracy of physicians' clinical predictions of survival (CPS) and assess the relationship between CPS and actual survival (AS) in patients with advanced cancer in palliative care units, hospital palliative care teams, and home palliative care services, as well as those receiving chemotherapy. This was a multicenter prospective cohort study conducted in 58 palliative care service centers in Japan. The palliative care physicians evaluated patients on the first day of admission and followed up all patients to their death or six months after enrollment. We evaluated the accuracy of CPS and assessed the relationship between CPS and AS in the four groups. We obtained a total of 2036 patients: 470, 764, 404, and 398 in hospital palliative care teams, palliative care units, home palliative care services, and chemotherapy, respectively. The proportion of accurate CPS (0.67-1.33 times AS) was 35% (95% CI 33-37%) in the total sample and ranged from 32% to 39% in each setting. While the proportion of patients living longer than CPS (pessimistic CPS) was 20% (95% CI 18-22%) in the total sample, ranging from 15% to 23% in each setting, the proportion of patients living shorter than CPS (optimistic CPS) was 45% (95% CI 43-47%) in the total sample, ranging from 43% to 49% in each setting. Physicians tend to overestimate when predicting survival in all palliative care patients, including those receiving chemotherapy. Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

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 resource provision in specialist palliative care.

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

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.

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.

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

PubMed

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

2017-07-01

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

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

PubMed

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

2017-11-25

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

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.

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.

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.

Outpatient Palliative Cardiology Service Embedded Within a Heart Failure Clinic: Experiences With an Emerging Model of Care.

PubMed

Gandesbery, Benjamin; Dobbie, Krista; Gorodeski, Eiran Z

2018-04-01

The role of palliative care consultation in the outpatient treatment of patients with symptomatic heart failure (HF) is poorly studied. In August 2015, we created an outpatient palliative care service embedded within the HF clinic at Cleveland Clinic main campus. To characterize patients cared for by our novel outpatient palliative cardiology service, including their degree of HF, symptoms, comorbidities, topics addressed in clinic, palliative treatments prescribed, advanced directives status, and mortality. We conducted a retrospective chart review of all patients evaluated by this outpatient service. Eighty patients were seen in 229 outpatient encounters. The most commonly reported symptoms were tiredness (74%), pain (64%), dyspnea (57%), drowsiness (45%), anxiety (45%), and depression (43%). The most frequently addressed issues were pain management (55%) and advanced care planning (54%). The most common palliative medications prescribed in palliative care clinic were opiates (48%), laxatives (22%), antineuropathics (22%), and antidepressants (16%). The 1-year survival rate was 70% (CI 65-75%). Embedding palliative medicine services in an HF outpatient clinic is feasible. Patients seen in this setting had an array of quality-of-life limiting symptoms and were medically managed with several interventions familiar to palliative medicine specialists. Outpatients with chronic HF have a significant symptom burden and may benefit from outpatient specialist palliative care.

[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.

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.

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.

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.

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.

Palliative Care Service Use in Four European Countries: A Cross-National Retrospective Study via Representative Networks of General Practitioners

PubMed Central

Pivodic, Lara; Pardon, Koen; Van den Block, Lieve; Van Casteren, Viviane; Miccinesi, Guido; Donker, Gé A.; Alonso, Tomás Vega; Alonso, José Lozano; Aprile, Pierangelo Lora; Onwuteaka-Philipsen, Bregje D.; Deliens, Luc

2013-01-01

Background Due to a rising number of deaths from cancer and other chronic diseases a growing number of people experience complex symptoms and require palliative care towards the end of life. However, population-based data on the number of people receiving palliative care in Europe are scarce. The objective of this study is to examine, in four European countries, the number of people receiving palliative care in the last three months of life and the factors associated with receiving palliative care. Methods Cross-national retrospective study. Over two years (2009–2010), GPs belonging to representative epidemiological surveillance networks in Belgium, the Netherlands, Italy, and Spain registered weekly all deaths of patients (≥18 years) in their practices and the care they received in the last three months of life using a standardized form. Sudden deaths were excluded. Results We studied 4,466 deaths. GPs perceived to have delivered palliative care to 50% of patients in Belgium, 55% in Italy, 62% in the Netherlands, and 65% in Spain (p<.001). Palliative care specialists attended to 29% of patients in the Netherlands, 39% in Italy, 45% in Spain, and 47% in Belgium (p<.001). Specialist palliative care lasted a median (inter-quartile range) of 15 (23) days in Belgium to 30 (70) days in Italy (p<.001). Cancer patients were more likely than non-cancer patients to receive palliative care in all countries as were younger patients in Italy and Spain with regard to specialist palliative care. Conclusions Although palliative care is established in the countries studied, there are considerable differences in its provision. Two potentially underserved groups emerge non-cancer patients in all countries and older people in Italy and Spain. Future research should examine how differences in palliative care use relate to both patient characteristics and existing national health care policies. PMID:24386381

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

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.

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.

Integration of Palliative Care Into Comprehensive Cancer Treatment at Moi Teaching and Referral Hospital in Western Kenya

PubMed Central

Kipsang, Susan; Gramelspacher, Gregory; Choi, Eunyoung; Brown, Colleen; Hill, Adam B.; Loehrer, Patrick J.; Busakhala, Naftali; Chite Asirwa, F.

2015-01-01

Purpose The prognosis for the majority of patients with cancer in Kenya is poor, with most patients presenting with advanced disease. In addition, many patients are unable to afford the optimal therapies required. Therefore, palliative care is an essential part of comprehensive cancer care. This study reviews the implementation of a palliative care service based at the Moi Teaching and Referral Hospital in Eldoret, Kenya, and describes the current scope and challenges of providing palliative care services in an East African tertiary public referral hospital. Methods This is a review of the palliative care clinical services at the only tertiary public referral hospital in western Kenya from January 2012 through September 2014. Palliative care team members documented each patient's encounter on standardized palliative care assessment forms; data were then entered into the Academic Model Providing Access to Health Care (AMPATH)-Oncology database. Interviews were also conducted to identify current challenges and opportunities for program improvement. Results This study documents the implementation of a palliative care service line in Eldoret, Kenya. Barriers to providing optimal palliative cancer care include distance to pharmacies that stock opioids, limited selection of opioid preparations, education of health care workers in palliative care, access to palliative chemoradiation, and limited availability of outpatient and inpatient hospice services. Conclusion Palliative care services in Eldoret, Kenya, have become a key component of its comprehensive cancer treatment program. PMID:28804768

Integration of Palliative Care Into Comprehensive Cancer Treatment at Moi Teaching and Referral Hospital in Western Kenya.

PubMed

Cornetta, Kenneth; Kipsang, Susan; Gramelspacher, Gregory; Choi, Eunyoung; Brown, Colleen; Hill, Adam B; Loehrer, Patrick J; Busakhala, Naftali; Chite Asirwa, F

2015-10-01

The prognosis for the majority of patients with cancer in Kenya is poor, with most patients presenting with advanced disease. In addition, many patients are unable to afford the optimal therapies required. Therefore, palliative care is an essential part of comprehensive cancer care. This study reviews the implementation of a palliative care service based at the Moi Teaching and Referral Hospital in Eldoret, Kenya, and describes the current scope and challenges of providing palliative care services in an East African tertiary public referral hospital. This is a review of the palliative care clinical services at the only tertiary public referral hospital in western Kenya from January 2012 through September 2014. Palliative care team members documented each patient's encounter on standardized palliative care assessment forms; data were then entered into the Academic Model Providing Access to Health Care (AMPATH)-Oncology database. Interviews were also conducted to identify current challenges and opportunities for program improvement. This study documents the implementation of a palliative care service line in Eldoret, Kenya. Barriers to providing optimal palliative cancer care include distance to pharmacies that stock opioids, limited selection of opioid preparations, education of health care workers in palliative care, access to palliative chemoradiation, and limited availability of outpatient and inpatient hospice services. Palliative care services in Eldoret, Kenya, have become a key component of its comprehensive cancer treatment program.

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

PubMed

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

2017-07-07

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

Keep in touch (KIT): perspectives on introducing internet-based communication and information technologies in palliative care.

PubMed

Guo, Qiaohong; Cann, Beverley; McClement, Susan; Thompson, Genevieve; Chochinov, Harvey Max

2016-08-02

Hospitalized palliative patients need to keep in touch with their loved ones. Regular social contact may be especially difficult for individuals on palliative care in-patient units due to the isolating nature of hospital settings. Technology can help mitigate isolation by facilitating social connection. This study aimed to explore the acceptability of introducing internet-based communication and information technologies for patients on a palliative care in-patient unit. In the first phase of the Keep in Touch (KIT) project, a diverse group of key informants were consulted regarding their perspectives on web-based communication on in-patient palliative care units. Participants included palliative patients, family members, direct care providers, communication and information technology experts, and institutional administrators. Data was collected through focus groups, interviews and drop-in consultations, and was analyzed for themes, consensus, and major differences across participant groups. Hospitalized palliative patients and their family members described the challenges of keeping in touch with family and friends. Participants identified numerous examples of ways that communication and information technologies could benefit patients' quality of life and care. Patients and family members saw few drawbacks associated with the use of such technology. While generally supportive, direct care providers were concerned that patient requests for assistance in using the technology would place increased demands on their time. Administrators and IT experts recognized issues such as privacy and costs related to offering these technologies throughout an organization and in the larger health care system. This study affirmed the acceptability of offering internet-based communication and information technologies on palliative care in-patient units. It provides the foundation for trialing these technologies on a palliative in-patient unit. Further study is needed to confirm the feasibility of offering these technologies at the bedside.

Community Pharmacists' Attitudes Toward Palliative Care: An Australian Nationwide Survey

PubMed Central

Hewitt, Lauren Y.; Tuffin, Penelope H.R.

2013-01-01

Abstract Background: Pharmacists are among the most accessible health care professionals in the community, yet are often not involved in community palliative care teams. Objective: We investigated community pharmacists' attitudes, beliefs, feelings, and knowledge about palliative care as a first step towards determining how best to facilitate the inclusion of community pharmacists on the palliative care team. Method: A cross-sectional descriptive survey design was used. Subjects: Community pharmacists around Australia were invited to participate; 250 completed surveys were returned. Measurements: A survey was constructed to measure pharmacists' knowledge and experience, emotions and beliefs about palliative care. Results: Pharmacists were generally positive about providing services and supports for palliative care patients, yet they also reported negative beliefs and emotions about palliative care. In addition, pharmacists had good knowledge of some aspects of palliative care, but misconceptions about other aspects. Pharmacists' beliefs and knowledge about palliative care predicted—and therefore underpinned—a positive attitude towards palliative care and the provision of services and supports for palliative care patients. Conclusion: The results provide evidence that pharmacists need training and support to facilitate their involvement in providing services and supports for palliative care patients, and highlight areas that training and support initiatives should focus on. PMID:24147876

Community pharmacists' attitudes toward palliative care: an Australian nationwide survey.

PubMed

O'Connor, Moira; Hewitt, Lauren Y; Tuffin, Penelope H R

2013-12-01

Pharmacists are among the most accessible health care professionals in the community, yet are often not involved in community palliative care teams. We investigated community pharmacists' attitudes, beliefs, feelings, and knowledge about palliative care as a first step towards determining how best to facilitate the inclusion of community pharmacists on the palliative care team. A cross-sectional descriptive survey design was used. Community pharmacists around Australia were invited to participate; 250 completed surveys were returned. A survey was constructed to measure pharmacists' knowledge and experience, emotions and beliefs about palliative care. Pharmacists were generally positive about providing services and supports for palliative care patients, yet they also reported negative beliefs and emotions about palliative care. In addition, pharmacists had good knowledge of some aspects of palliative care, but misconceptions about other aspects. Pharmacists' beliefs and knowledge about palliative care predicted--and therefore underpinned--a positive attitude towards palliative care and the provision of services and supports for palliative care patients. The results provide evidence that pharmacists need training and support to facilitate their involvement in providing services and supports for palliative care patients, and highlight areas that training and support initiatives should focus on.

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.

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.

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.

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.

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

PubMed

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

2018-04-01

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

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.

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.

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.

Increased access to palliative care and hospice services: opportunities to improve value in health care.

PubMed

Meier, Diane E

2011-09-01

A small proportion of patients with serious illness or multiple chronic conditions account for the majority of health care spending. Despite the high cost, evidence demonstrates that these patients receive health care of inadequate quality, characterized by fragmentation, overuse, medical errors, and poor quality of life. This article examines data demonstrating the impact of the U.S. health care system on clinical care outcomes and costs for the sickest and most vulnerable patients. It also defines palliative care and hospice, synthesizes studies of the outcomes of palliative care and hospice services, reviews variables predicting access to palliative care and hospice services, and identifies those policy priorities necessary to strengthen access to high-quality palliative care. Palliative care and hospice services improve patient-centered outcomes such as pain, depression, and other symptoms; patient and family satisfaction; and the receipt of care in the place that the patient chooses. Some data suggest that, compared with the usual care, palliative care prolongs life. By helping patients get the care they need to avoid unnecessary emergency department and hospital stays and shifting the locus of care to the home or community, palliative care and hospice reduce health care spending for America's sickest and most costly patient populations. Policies focused on enhancing the palliative care workforce, investing in the field's science base, and increasing the availability of services in U.S. hospitals and nursing homes are needed to ensure equitable access to optimal care for seriously ill patients and those with multiple chronic conditions. © 2011 Milbank Memorial Fund. Published by Wiley Periodicals Inc.

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.

Increased Access to Palliative Care and Hospice Services: Opportunities to Improve Value in Health Care

PubMed Central

Meier, Diane E

2011-01-01

Context: A small proportion of patients with serious illness or multiple chronic conditions account for the majority of health care spending. Despite the high cost, evidence demonstrates that these patients receive health care of inadequate quality, characterized by fragmentation, overuse, medical errors, and poor quality of life. Methods: This article examines data demonstrating the impact of the U.S. health care system on clinical care outcomes and costs for the sickest and most vulnerable patients. It also defines palliative care and hospice, synthesizes studies of the outcomes of palliative care and hospice services, reviews variables predicting access to palliative care and hospice services, and identifies those policy priorities necessary to strengthen access to high-quality palliative care. Findings: Palliative care and hospice services improve patient-centered outcomes such as pain, depression, and other symptoms; patient and family satisfaction; and the receipt of care in the place that the patient chooses. Some data suggest that, compared with the usual care, palliative care prolongs life. By helping patients get the care they need to avoid unnecessary emergency department and hospital stays and shifting the locus of care to the home or community, palliative care and hospice reduce health care spending for America's sickest and most costly patient populations. Conclusions: Policies focused on enhancing the palliative care workforce, investing in the field's science base, and increasing the availability of services in U.S. hospitals and nursing homes are needed to ensure equitable access to optimal care for seriously ill patients and those with multiple chronic conditions. PMID:21933272

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

PubMed

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

2017-10-01

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

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.

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

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

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.

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 families. Conclusions: Physicians providing care to lung transplant candidates reported considerable barriers to the delivery and acceptance of palliative care and identified specific strategies to improve palliative care for lung transplant candidates. PMID:22922517

A qualitative evaluation of the impact of a palliative care course on preregistration nursing students' practice in Cameroon.

PubMed

Bassah, Nahyeni; Cox, Karen; Seymour, Jane

2016-03-31

Current evidence suggests that palliative care education can improve preregistration nursing students' competencies in palliative care. However, it is not known whether these competencies are translated into students' practice in the care of patients who are approaching the end of life. This paper seeks to contribute to the palliative care evidence base by examining how nursing students in receipt of education report transfer of learning to practice, and what the barriers and facilitators may be, in a resource-poor country. We utilised focus groups and individual critical incident interviews to explore nursing students' palliative care learning transfer. Three focus groups, consisting of 23 participants and 10 individual critical incident interviews were conducted with preregistration nursing student who had attended a palliative care course in Cameroon and had experience caring for a patient approaching the end of life. Data was analysed thematically, using the framework approach. The results suggest that nursing students in receipt of palliative care education can transfer their learning to practice. Students reported recognizing patients with palliative care needs, providing patients with physical, psychosocial and spiritual support and communicating patient information to the wider care team. They did however perceive some barriers to this transfer which were either related to themselves, qualified nurses, the practice setting or family caregivers and patients. The findings from this study suggest that nursing student in receipt of palliative care education can use their learning in practice to provide care to patients and their families approaching the end of life. Nevertheless, these findings need to be treated with some caution given the self-reported nature of the data. Demonstrating the link between preregistration palliative care education and patient care is vital to ensuring that newly acquired knowledge and skills are translated and embedded into clinical practice. This study also has implications for advocating for palliative care policies and adequately preparing clinical placement sites for students' learning and transfer of learning.

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.

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.

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.

Oncologists’ Perspectives on Concurrent Palliative Care in an NCI-designated Comprehensive Cancer Center

PubMed Central

Bakitas, Marie; Lyons, Kathleen Doyle; Hegel, Mark T.; Ahles, Tim

2013-01-01

Purpose To understand oncology clinicians’ perspectives about the care of advanced cancer patients following the completion of the ENABLE II (Educate, Nurture, Advise, Before Life Ends) randomized clinical trial (RCT) of a concurrent oncology palliative care model. Methods Qualitative interview study of 35 oncology clinicians about their approach to patients with advanced cancer and the effect of the ENABLE II RCT. Results Oncologists believed that integrating palliative care at the time of an advanced cancer diagnosis enhanced patient care and complemented their practice. Self-assessment of their practice with advanced cancer patients comprised four themes: 1) treating the whole patient, 2) focusing on quality versus quantity of life, 3) “some patients just want to fight”, and 4) helping with transitions; timing is everything. Five themes comprised oncologists’ views on the complementary role of palliative care: 1) “refer early and often”, 2) referral challenges: “Palliative” equals hospice; “Heme patients are different”, 3) palliative care as consultants or co-managers, 4) palliative care “shares the load”, and 5) ENABLE II facilitated palliative care integration. Conclusions Oncologists described the RCT as holistic and complementary, and as a significant factor in adopting concurrent care as a standard of care. PMID:23040412

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

PubMed Central

Ranganathan, Anjana; Dougherty, Meredith; Waite, David

2013-01-01

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

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.

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

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.

[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.

A service evaluation of an integrated model of palliative care of cystic fibrosis.

PubMed

Bourke, Stephen J; Booth, Zoe; Doe, Simon; Anderson, Alan; Rice, Sarah; Gascoigne, Alistair; Quibell, Rachel

2016-07-01

Patients with advanced cystic fibrosis have severe symptoms with a complex trajectory of exacerbations and recovery. They are often awaiting lung transplantation, and many die without receiving specialist palliative care. We introduced an integrated model whereby palliative specialists joined the cystic fibrosis team to provide palliative care in parallel with standard care. A service evaluation of this model of care was undertaken in a prospective case series documenting symptoms and outcomes, the views of the cystic fibrosis team and the experience of the palliative specialists. Over 3 years, 28 (10%) of 282 patients attending the cystic fibrosis centre had specialist palliative care. They had advanced lung disease (mean forced expiratory volume in 1 s (FEV1) = 0.86 L (25% predicted)), and 17 died: 6 were on a transplant waiting list at death; 10 were unsuitable and 1 died post transplantation. All who died over these 3 years had specialist palliative care. Four patients had successful transplants. Assessment showed a high prevalence of breathlessness, cough, pain, vomiting and fatigue, with a significant impact on daily life. The cystic fibrosis team rated this model of care highly, felt that palliative care should be members of the team, and thought that patients had found it helpful. The palliative specialists gained knowledge of cystic fibrosis, found it beneficial to meet patients earlier in the disease, and identified unmet needs in managing bereavement and the effects of deaths on other patients with cystic fibrosis. This model has been successful in overcoming the difficulties in access to specialist palliative care for patients with cystic fibrosis. © The Author(s) 2016.

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 other nonmalignant conditions.

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 families face challenges after discharge from intensive care. Conclusions Palliative care is increasingly accepted as an essential component of comprehensive care for critically ill patients, regardless of diagnosis or prognosis. A variety of strategies to improve ICU palliative care appear to be effective, and resources including technical assistance and tools are available to support improvement efforts. As the longer-term impact of intensive care on those surviving acute critical illness is increasingly documented, palliative care can help prepare and support patients and families for challenges after ICU discharge. Further research is needed to inform efforts to integrate palliative care with intensive care more effectively and efficiently in and after the ICU and to document improvement using valid and responsive outcome measures. PMID:25167087

Palliative Sedation in Patients With Cancer.

PubMed

Maltoni, Marco; Setola, Elisabetta

2015-10-01

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

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.

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

PubMed Central

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

2013-01-01

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

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

PubMed

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

2013-10-01

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

Modest overall survival improvements from 1998 to 2009 in metastatic gastric cancer patients: a population-based SEER analysis.

PubMed

Ebinger, Sabrina M; Warschkow, René; Tarantino, Ignazio; Schmied, Bruno M; Güller, Ulrich; Schiesser, Marc

2016-07-01

An increasing fraction of gastric cancer patients present with distant metastases at diagnosis. The objective of the present 11-year population-based trend analysis was to assess the survival rates in patients who underwent and in patients who did not undergo palliative gastrectomy. Patients with metastatic gastric cancer were identified from the Surveillance, Epidemiology, and End Results (SEER) database between 1998 and 2009. Time trend and impact of palliative gastrectomy on survival were assessed by both a multivariate Cox proportional hazards model and propensity score matching. We identified 8249 patients with stage IV gastric cancer. The rate of metastatic disease increased from 31.0 % in 1998 to 37.5 % in 2009 (P < 0.001). The palliative gastrectomy rate dropped from 18.8 to 10.2 % (P = 0.004). The median survival for patients who underwent palliative gastrectomy (N = 1445, 17.4 %) and for patients who did not undergo palliative gastrectomy (N = 6804, 82.4 %) was 7 and 3 months, respectively. There was an increase in median overall survival from 2 months (1998) to 3 months (2009) in the no-gastrectomy group, and from 6.5 to 8 months in the gastrectomy group. The 3-year cancer-specific survival rates were 2.1 % (95 % confidence interval 1.7-2.5 %) for patients who did not undergo palliative gastrectomy and 9.4 % (95 % confidence interval 7.8-11.2 %) for patients who underwent palliative gastrectomy (P < 0.001). Palliative gastrectomy was associated with an increased cancer-specific survival in propensity-score-adjusted Cox regression analyses (hazard ratio 0.50, 95 % confidence interval 0.46-0.55, P < 0.001). On a population-based level, only modest improvements in prognosis for metastatic gastric cancer were observed in patients who underwent and in patients who did not undergo palliative gastrectomy. Considering the low rate of midterm survivors in both groups, only a small subgroup of patients benefits from palliative gastrectomy.

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 patients are supported by the current retrospective study. Most EPs felt uncertain in the treatment of palliative care patients. Therefore, advanced training in palliative care medicine and end-of-life care should be integrated into emergency medical training.

Method for palliation of pain in human bone cancer using therapeutic tin-117m compositions

DOEpatents

Srivastava, S.C.; Meinken, G.E.; Mausner, L.F.; Atkins, H.L.

1998-12-29

The invention provides a method for the palliation of bone pain due to cancer by the administration of a unique dosage of a tin-117m (Sn-117m) stannic chelate complex in a pharmaceutically acceptable composition. In addition, the invention provides a method for simultaneous palliation of bone pain and radiotherapy in cancer patients using compositions containing Sn-117m chelates. The invention also provides a method for palliating bone pain in cancer patients using Sn-117m-containing compositions and monitoring patient status by imaging the distribution of the Sn-117m in the patients. Also provided are pharmaceutically acceptable compositions containing Sn-117m chelate complexes for the palliation of bone pain in cancer patients. 5 figs.

Method for palliation of pain in human bone cancer using therapeutic tin-117m compositions

DOEpatents

Srivastava, Suresh C.; Meinken, George E.; Mausner, Leonard F.; Atkins, Harold L.

1998-12-29

The invention provides a method for the palliation of bone pain due to cancer by the administration of a unique dosage of a tin-117m (Sn-117m) stannic chelate complex in a pharmaceutically acceptable composition. In addition, the invention provides a method for simultaneous palliation of bone pain and radiotherapy in cancer patients using compositions containing Sn-117m chelates. The invention also provides a method for palliating bone pain in cancer patients using Sn-117m-containing compositions and monitoring patient status by imaging the distribution of the Sn-117m in the patients. Also provided are pharmaceutically acceptable compositions containing Sn-117m chelate complexes for the palliation of bone pain in cancer patients.

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

Continuous palliative sedation for cancer and noncancer patients.

PubMed

Swart, Siebe J; Rietjens, Judith A C; van Zuylen, Lia; Zuurmond, Wouter W A; Perez, Roberto S G M; van der Maas, Paul J; van Delden, Johannes J M; van der Heide, Agnes

2012-02-01

Palliative care is often focused on cancer patients. Palliative sedation at the end of life is an intervention to address severe suffering in the last stage of life. To study the practice of continuous palliative sedation for both cancer and noncancer patients. In 2008, a structured questionnaire was sent to 1580 physicians regarding their last patient receiving continuous sedation until death. A total of 606 physicians (38%) filled out the questionnaire, of whom 370 (61%) reported on their last case of continuous sedation (cancer patients: n=282 [76%] and noncancer patients: n=88 [24%]). More often, noncancer patients were older, female, and not fully competent. Dyspnea (odds ratio [OR]=2.13; 95% confidence interval [CI]: 1.22, 3.72) and psychological exhaustion (OR=2.64; 95% CI: 1.26, 5.55) were more often a decisive indication for continuous sedation for these patients. A palliative care team was consulted less often for noncancer patients (OR=0.45; 95% CI: 0.21, 0.96). Also, preceding sedation, euthanasia was discussed less often with noncancer patients (OR=0.42; 95% CI: 0.24, 0.73), whereas their relatives more often initiated discussion about euthanasia than relatives of cancer patients (OR=3.75; 95% CI: 1.26, 11.20). The practice of continuous palliative sedation in patients dying of cancer differs from patients dying of other diseases. These differences seem to be related to the less predictable course of noncancer diseases, which may reduce physicians' awareness of the imminence of death. Increased attention to noncancer diseases in palliative care practice and research is, therefore, crucial as is more attention to the potential benefits of palliative care consultation. Copyright © 2012 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

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

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.

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

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

Education, implementation, and policy barriers to greater integration of palliative care: A literature review.

PubMed

Aldridge, Melissa D; Hasselaar, Jeroen; Garralda, Eduardo; van der Eerden, Marlieke; Stevenson, David; McKendrick, Karen; Centeno, Carlos; Meier, Diane E

2016-03-01

Early integration of palliative care into the management of patients with serious disease has the potential to both improve quality of life of patients and families and reduce healthcare costs. Despite these benefits, significant barriers exist in the United States to the early integration of palliative care in the disease trajectory of individuals with serious illness. To provide an overview of the barriers to more widespread palliative care integration in the United States. A literature review using PubMed from 2005 to March 2015 augmented by primary data collected from 405 hospitals included in the Center to Advance Palliative Care's National Palliative Care Registry for years 2012 and 2013. We use the World Health Organization's Public Health Strategy for Palliative Care as a framework for analyzing barriers to palliative care integration. We identified key barriers to palliative care integration across three World Health Organization domains: (1) education domain: lack of adequate education/training and perception of palliative care as end-of-life care; (2) implementation domain: inadequate size of palliative medicine-trained workforce, challenge of identifying patients appropriate for palliative care referral, and need for culture change across settings; (3) policy domain: fragmented healthcare system, need for greater funding for research, lack of adequate reimbursement for palliative care, and regulatory barriers. We describe the key policy and educational opportunities in the United States to address and potentially overcome the barriers to greater integration of palliative care into the healthcare of Americans with serious illness. © The Author(s) 2015.

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.

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.

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.

Legal Support for Palliative Care Patients.

PubMed

Ezer, Tamar; Burke-Shyne, Naomi; Hepford, Kiera

2018-02-01

Palliative care patients face legal issues that impact their quality of life. Legal support, embedded in holistic palliative care services, has developed globally over the last decade to address this. This article aims to trace the origins of legal support for palliative care patients, detail models of legal support, and describe achievements and challenges. The article draws on years of work in this area and the available literature. Common legal issues include disposing of property and drafting wills, planning for children, dealing with debt and securing social benefits, and addressing discrimination. Diverse approaches to integrating legal support include developing paralegal skills, accessing skilled legal advice, empowering patients and families, and building awareness of rights among health care workers. There is robust and growing acceptance of legal support as a key component of holistic palliative care, and many palliative care professionals are identifying and addressing the legal needs they encounter through mediation, guidance on basic rights, or referrals to a lawyer. Addressing legal problems can contribute to peace of mind, well-being, and the health of patients. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

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.

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 bring about a sense of identity that may encompass a common language and religion. Ethnicity is fluid and should not be confused with nationality or migration or race. In this review, we define ethnicity in relation to the self-identification of participants in studies that will be included in the review.Culture refers to patterns of explanatory models, beliefs, values and customs. These patterns may be informed and expressed in things like diet, clothing or rituals, or in the form of language and social or political systems. Culture may be fluid because of developments in people's lives. In light of the aforementioned definitions, and recognizing the inconsistency in how these terms are sometimes used, the authors of this review define ethnocultural patients, as described in papers to be reviewed, as those who belong to an ethnic group by way of involvement, attachment, self-labelling or attitude towards the group, and who share cultural traditions, ancestry, language, nationality or country of origin.Palliative care in the context of cancer focuses on the improvement of the quality of life of patients by addressing their physical, emotional and spiritual needs, and by supporting their families. Palliative care is often associated with supportive and hospice care. Supportive care emphasizes meeting patients' needs such as physical, mental, social, psychological, emotional and material needs from the period before diagnosis, during diagnosis, treatment to the follow-up period in the cancer trajectory. Hospice care in the context of cancer aims to relieve patients' pain and suffering, and improve their quality of life. Hospice care includes palliative care services and other services such as case management, respite care and bereavement care. Hospice care focuses on patients with terminal illness (i.e. with expected survival of less than six months) and their families. Moreover, hospice care is facilitated by a multidisciplinary team of physicians, nurses, social workers, chaplains, home health aides and volunteers.Palliative care needs for cancer patients are numerous and may include needs related to activities of daily living, communication, sexuality, physical needs, psychological needs, fear, spiritual wellbeing, socioeconomic aspects and insufficiency of information. Cancer patients often report of suffering, pain and being in constant need of support. In dealing with their suffering, some patients seek internal motivation by looking at the disease as a life challenge. Other patients turn to external sources of motivation like religion, or peer and family support groups.Patients from different ethnocultural groups report similar as well as dissimilar palliative care needs and experiences. With respect to similarities, a study from the United States found that African American and Caucasian patients alike valued practical assistance from social groups. Participants from both ethnocultural groups valued friends and families that listened to their cancer-related concerns. Similarly, Turkish and Moroccan patients in a study conducted in Netherlands valued friends and family members that were there for them. Additionally, participants particularly of African American descent treasured positive attitudes from people around them and valued support from religion and faith communities. These sentiments are echoed in a palliative care study conducted in the United Kingdom. In the UK study, Caribbean Blacks and British White patients appreciated the significance of social networks and partner or spousal support in their cancer trajectory.In regards to unsupportive palliative care experiences, authors of the United States study report that African Americans and Caucasians had more similarities than differences. Firstly, both ethnocultural groups shared experiences of losing association with family and close friends after they learnt of the patients' diagnosis. These sentiments were also reported by Danish-born and immigrant patients in a study by Kristiansen and colleagues. Secondly, both African American and Caucasian patients felt responsible for the emotional wellbeing of their loved ones.When it comes to differences in palliative care needs and experiences, Grange and colleagues report that African American and Caucasian participants valued provision of housing which included daily patient care. Participants treasured the opportunity to either move or have family members move in and live with them. However, more African American than Caucasian participants had experiences of moving in with a family member. Important differences in unsupportive palliative care were also reported. Although both African Americans and Caucasians lost friends and family members following knowledge of the cancer diagnoses, more African Americans than Caucasians were likely to report losing friendship. Additionally, African Americans experienced diminished independence mainly because of overprotection from family and friends. Diminishing independence is echoed in the Dutch study involving Turkish and Moroccan patients. However, in the Dutch study, healthcare providers appeared to advocate for patients' independence which contradicted with the value placed by family members in protecting their loved one.In another American study, Latina women desired health-related information more often than their Caucasian American counterparts. The need for information by Latina women was irrespective of their socio-demographic factors, including level of education.The aforementioned similarities and differences in palliative care experiences call for further exploration of ethnocultural palliative care patients' experiences. A better understanding of their experiences will create avenues for finding better ways of providing palliative care, preventing psychological distress and improving quality of life and death.Understanding ethnocultural issues is important because the unique characteristics of ethnocultural groups often inform approaches to palliative care. Ethnocultural meanings of illness, suffering and dying define the theoretical underpinnings that patients and healthcare providers draw upon in their relations. Furthermore, Baker suggests that the provision and receipt of palliative care is more related to culture or ethnicity than to age, education, socioeconomic status or other variables. Moreover, culture affects communication, decision-making, response to symptoms, treatment choices and emotional expression at the end of life.Palliative care patients often regard recommendations from healthcare providers as very useful. Similarly, healthcare providers may find ethnocultural knowledge beneficial in the provision of palliative care. When ethnocultural knowledge is lacking, healthcare providers, especially those with minimal training on ethnocultural issues, may provide unsatisfactory palliative care. Similarly, when ethnocultural differences are overlooked or inadequately addressed, inferior care often occurs. Inferior care which may involve inequality in utilization of and access to palliative care services, pain and symptom management and location of death, is especially disturbing when adequate palliative care resources exist in some health institutions.Although qualitative and quantitative research has been conducted in this area, no systematic review compiling findings on ethnocultural patients' experiences of palliative care has been conducted or is underway as per the Joanna Briggs Institute Database of Systematic Reviews and Implementation Reports, Cochrane Database of Systematic Reviews or PROSPERO. The purpose of this systematic review is to summarize findings of qualitative studies that focus on ethnocultural patients' experience of palliative care. (ABSTRACT TRUNCATED)

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.

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

PubMed

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

2015-11-02

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

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.

Palliative Care and Cardiovascular Disease and Stroke: A Policy Statement From the American Heart Association/American Stroke Association.

PubMed

Braun, Lynne T; Grady, Kathleen L; Kutner, Jean S; Adler, Eric; Berlinger, Nancy; Boss, Renee; Butler, Javed; Enguidanos, Susan; Friebert, Sarah; Gardner, Timothy J; Higgins, Phil; Holloway, Robert; Konig, Madeleine; Meier, Diane; Morrissey, Mary Beth; Quest, Tammie E; Wiegand, Debra L; Coombs-Lee, Barbara; Fitchett, George; Gupta, Charu; Roach, William H

2016-09-13

The mission of the American Heart Association/American Stroke Association includes increasing access to high-quality, evidence-based care that improves patient outcomes such as health-related quality of life and is consistent with the patients' values, preferences, and goals. Awareness of and access to palliative care interventions align with the American Heart Association/American Stroke Association mission. The purposes of this policy statement are to provide background on the importance of palliative care as it pertains to patients with advanced cardiovascular disease and stroke and their families and to make recommendations for policy decisions. Palliative care, defined as patient- and family-centered care that optimizes health-related quality of life by anticipating, preventing, and treating suffering, should be integrated into the care of all patients with advanced cardiovascular disease and stroke early in the disease trajectory. Palliative care focuses on communication, shared decision making about treatment options, advance care planning, and attention to physical, emotional, spiritual, and psychological distress with inclusion of the patient's family and care system. Our policy recommendations address the following: reimbursement for comprehensive delivery of palliative care services for patients with advanced cardiovascular disease and stroke; strong payer-provider relationships that involve data sharing to identify patients in need of palliative care, identification of better care and payment models, and establishment of quality standards and outcome measurements; healthcare system policies for the provision of comprehensive palliative care services during hospitalization, including goals of care, treatment decisions, needs of family caregivers, and transition to other care settings; and health professional education in palliative care as part of licensure requirements. © 2016 American Heart Association, Inc.

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.

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

A qualitative study: potential benefits and challenges of traditional healers in providing aspects of palliative care in rural South Africa.

PubMed

Campbell, L M; Amin, N N

2014-01-01

This article draws on selected palliative care providers' views and experiences to reflect on the potential benefits and possible challenges of involving traditional healers in palliative care in rural areas of South Africa. There is increasing consensus that palliative care should be offered by a range of professional and non-professional healthcare givers. Including non-professionals such as traditional healers in a palliative care team may strengthen care provisioning as they have intimate knowledge of patients' local culture and spiritual beliefs. Employing the qualitative method of photo-elicitation, one-on-one discussions about the photographs taken by participants were conducted. The participants - 4 palliative care nurses and 17 home-based care workers - were purposively selected to provide in-depth information about their experiences as palliative caregivers in rural homes. Healthcare workers' experiences revealed that the patients they cared for valued traditional rituals connected to illness, dying, death and bereavement. Participants suggested that traditional healers should be included in palliative care training programs as they could offer appropriate psychological, cultural and spiritual care. A challenge identified by participants was the potential of traditional healers to foster a false sense of longevity in patients facing death. The importance of recognising the value of traditional practices in palliative care should not be underrated in rural South Africa. Traditional healers could enhance palliative care services as they have deep, insider knowledge of patients' spiritual needs and awareness of cultural practices relating to illness, death, dying and bereavement. Incorporating traditional healers into healthcare services where there are differences in the worldviews of healthcare providers and patients, and a sensitivity to mediate cultural differences between caregivers and patients, could have the benefit of providing appropriate care in rural spaces. Considering the influences of cultural and spiritual beliefs on the wellbeing of patients living in rural areas, the inclusion of traditional healers in a palliative care team is a sensible move. It is, nevertheless, important to note that unanticipated challenges may arise with respect to power differentials within the palliative care team and to beliefs that contradict medical prognosis.

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

PubMed

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

2018-04-01

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

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.

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.

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.

Developing a complex intervention to support timely engagement with palliative care for patients with advanced cancer in primary and secondary care in the UK: a study protocol.

PubMed

Hackett, Julia; Bekker, Hilary; Bennett, Michael I; Carder, Paul; Gallagher, Jean; Henry, Claire; Kite, Suzanne; Taylor, Sally; Velikova, Galina; Ziegler, Lucy

2018-05-14

For patients with advanced cancer, timely access to palliative care can improve quality of life and enable patients to participate in decisions about their end-of-life care. However, in a UK population of 2500 patients who died from cancer, one-third did not receive specialist palliative care, and of those who did, the duration of involvement was too short to maximise the benefits. Initiating a conversation about palliative care is challenging for some health professionals and patients often have unmet information needs and misconceptions about palliative care. We will work closely with patients and health professionals to develop a patient decision aid and health professional training module designed to facilitate a timely and informed conversation about palliative care. This study is being conducted over 24 months from November 2017 to October 2019 and follows the UK Medical Research Council framework for developing complex interventions and the International Patient Decision Aids Guideline. The Ottawa Decision Support Framework underpins the study. The Supporting Timely Engagement with Palliative care (STEP) intervention will be developed though an iterative process informed by interviews and focus groups with patients with advanced cancer, oncologists, general practitioners and palliative care doctors. An expert panel will also review each iteration. The expert panel will consist of a patient representative with experience of palliative care, health professionals who are involved in advanced cancer care decision-making, a medical education expert and the National Council for Palliative Care director of transformation. The feasibility and acceptability of the decision aid and doctor training will be tested in oncology and general practice settings. Ethical approval for the study has been granted by the Office for Research Ethics Committees Northern Ireland (ORECNI), approval reference 17/NI/0249. Dissemination and knowledge transfer will be conducted via publications, national bodies and networks, and patient and family groups. © 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.

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

PubMed

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

2017-01-01

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

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.

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.

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

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.

Patient participation in palliative care decisions: An ethnographic discourse analysis.

PubMed

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 decisions that shaped patients' dying trajectories. Discourse analysis encourages awareness of the role of language in either promoting or hindering patient participation in decision-making.

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 a measurable effect on any of the outcomes investigated. Patients reported high levels of satisfaction with general practitioner care, regardless of group assignment. Future research might focus on general practitioners without special interest in palliative care. PMID:24951633

Development of Palliative Care in China: A Tale of Three Cities.

PubMed

Yin, Zhenyu; Li, Jinxiang; Ma, Ke; Ning, Xiaohong; Chen, Huiping; Fu, Haiyan; Zhang, Haibo; Wang, Chun; Bruera, Eduardo; Hui, David

2017-11-01

China is the most populous country in the world, but access to palliative care is extremely limited. A better understanding of the development of palliative care programs in China and how they overcome the barriers to provide services would inform how we can further integrate palliative care into oncology practices in China. Here, we describe the program development and infrastructure of the palliative care programs at three Chinese institutions, using these as examples to discuss strategies to accelerate palliative care access for cancer patients in China. Case study of three palliative care programs in Chengdu, Kunming, and Beijing. The three examples of palliative care delivery in China ranged from a comprehensive program that includes all major branches of palliative care in Chengdu, a program that is predominantly inpatient-based in Kunming, and a smaller program at an earlier stage of development in Beijing. Despite the numerous challenges related to the limited training opportunities, stigma on death and dying, and lack of resources and policies to support clinical practice, these programs were able to overcome many barriers to offer palliative care services to patients with advanced diseases and to advance this discipline in China through visionary leadership, collaboration with other countries to acquire palliative care expertise, committed staff members, and persistence. Palliative care is limited in China, although a few comprehensive programs exist. Our findings may inform palliative care program development in other Chinese hospitals. With a population of 1.3 billion, China is the most populous country in the world, and cancer is the leading cause of death. However, only 0.7% of hospitals offer palliative care services, which significantly limits palliative care access for Chinese cancer patients. Here, we describe the program development and infrastructure of three palliative care programs in China, using these as examples to discuss how they were able to overcome various barriers to implement palliative care. Lessons from these programs may help to accelerate the progress of palliative cancer care in China. © AlphaMed Press 2017.

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.

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.

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. PMID:28379812

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.

Use of Opioids and Sedatives at End-of-Life

PubMed Central

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

2014-01-01

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

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.

[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.

Improving End-of-Life Care: Palliative Care Embedded in an Oncology Clinic Specializing in Targeted and Immune-Based Therapies.

PubMed

Einstein, David J; DeSanto-Madeya, Susan; Gregas, Matthew; Lynch, Jessica; McDermott, David F; Buss, Mary K

2017-09-01

Patients with advanced cancer benefit from early involvement of palliative care. The ideal method of palliative care integration remains to be determined, as does its effectiveness for patients treated with targeted and immune-based therapies. We studied the impact of an embedded palliative care team that saw patients in an academic oncology clinic specializing in targeted and immune-based therapies. Patients seen on a specific day accessed the embedded model, on the basis of automatic criteria; patients seen other days could be referred to a separate palliative care clinic (usual care). We abstracted data from the medical records of 114 patients who died during the 3 years after this model's implementation. Compared with usual care (n = 88), patients with access to the embedded model (n = 26) encountered palliative care as outpatients more often ( P = .003) and earlier (mean, 231 v 109 days before death; P < .001). Hospice enrollment rates were similar ( P = .303), but duration was doubled (mean, 57 v 25 days; P = .006), and enrollment > 7 days before death-a core Quality Oncology Practice Initiative metric-was higher in the embedded model (odds ratio, 5.60; P = .034). Place of death ( P = .505) and end-of-life chemotherapy (odds ratio, 0.361; P = .204) did not differ between the two arms. A model of embedded and automatically triggered palliative care among patients treated exclusively with targeted and immune-based therapies was associated with significant improvements in use and timing of palliative care and hospice, compared with usual practice.

A comprehensive palliative care program at a tertiary cancer center in Jordan.

PubMed

Shamieh, Omar; Hui, David

2015-03-01

The palliative care program in King Hussein Cancer Center (KHCC) is growing rapidly to serve the needs of patients with cancer and their families. To describe the KHCC palliative care program and its integration into the oncology care. Narrative review of our palliative care program. Patients with cancer at KHCC have access to an interprofessional palliative care at different settings. In 2012, the inpatient team saw 400 consultations and 979 referrals and admissions. The outpatient clinic had a total of 1133 patient visits. The home care program provided a total of 1501 visits. Our program is a regional center for education and training and actively conducts research. Our palliative care program may be a model for successful delivery of comprehensive cancer care in the Middle East. © The Author(s) 2013.

Palliative care and active disease management are synergistic in modern surgical oncology.

PubMed

Sadler, Erin M; Hawley, Philippa H; Easson, Alexandra M

2018-04-01

Palliative care has long been described in medical literature but only recently is being discussed in the surgical domain. Mounting evidence suggests that early integration of palliative care improves patient outcomes and this is especially true of oncology patients. Thus, the pendulum is swinging toward recognizing that palliative care and active disease management are not mutually exclusive but rather synergistic in modern surgical oncology. Here we use a patient vignette to demonstrate the new challenges and possibilities in modern surgical oncology, we then discuss the historic perspective of palliative care and describe how the paradigm is shifting. Finally, we introduce a model that may be beneficial in conceptualizing this new way of thinking about and integrating palliative care into surgical oncology. Copyright © 2017 Elsevier Inc. All rights reserved.

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

PubMed

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

2006-04-01

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

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.

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 decisions that shaped patients’ dying trajectories. Discourse analysis encourages awareness of the role of language in either promoting or hindering patient participation in decision-making. PMID:27882864

[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.

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 patients in Africa could be more comprehensive if they were based on the domains of the supportive care framework.

[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.

Integration of Specialized Pain Control Services in Palliative Care: A Nationwide Web-based Survey.

PubMed

Page, Nivedita Dilip

2017-01-01

Pain control is an important part of palliative care (PC), and conventional analgesics do not provide adequate pain relief to all patients. Many patients present with complex pain syndromes that require interventional pain control measures usually deployed by pain specialists. There is adequate integration of specialized pain control services with PC elsewhere, but information about the same in our country is lacking. An internet survey was conducted among palliative specialists regarding the need and availability of pain specialists for their patients suffering from complex pain syndromes. Their attitude toward integrating specialized pain control services in their practice was also explored. Majority of palliative physicians came across situations where specialists in pain would control the patients' pain better. There was a poor availability of such services, and when available, the cost was significant. It is heartening to note that though there is poor integration of specialized pain control services with palliation, palliative physicians acknowledge the need for pain specialists and their techniques for providing pain relief for their patients. Effective pain control is needed in palliation, barriers however exist, and there is a need to make pain specialists and interventional techniques more freely available.

[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.

Improving primary palliative care in Scotland: lessons from a mixed methods study.

PubMed

Mason, Bruce; Buckingham, Susan; Finucane, Anne; Hutchison, Peter; Kendall, Marilyn; McCutcheon, Hazel; Porteous, Lorna; Murray, Scott A

2015-12-10

Since 2012, all GP practices across Scotland have been supported to take a systematic approach to end-of-life care, by helping them to identify more patients for palliative care through a Palliative Care Directed Enhanced Service (DES). We aimed to understand the impact of this initiative. Routine quantitative data from the 2012/13, and 2013/14 DES were collected from regional health boards, analysed and discussed. Qualitative data were collected from a sample of 2012/13 DES returns and analysed using Thematic Analysis. Data were received from 512 practices in nine Scottish Health boards for the 2012-13 DES and 638 practices in 11 Health boards for 2013-14. A sample of 90 of the returns for 2012-13 was selected for qualitative analysis. In 2012-13, 72 % of patients who died of cancer were listed on the palliative care register (PCR) before death while 27 % of patients who died as a result of non-malignant conditions were listed on the PCR. In 2013-14, cancer identification remained the same but identification of people dying with other long-term conditions had improved to 32.5 %. We identified several key issues needed to improve palliative care in the community. The need for training to identify patients with palliative care needs (particularly non-cancer); communication skills training; improvements in sharing information across the NHS; under-resource of and lack of coordination with district nurses; improvements in information technology; and tools for working with enlarged palliative care registers. The DES helped more patients with long-term conditions (LTC) receive generalist palliative care. Approaching generalist palliative care as anticipatory care could facilitate communication between GPs and patients/families and remove some barriers to early identification of palliative care needs. Improvement of information technology and use of identification tools like the SPICT™ may improve professionals' communication with each other and help may make identification and management of patients easier.

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 part of the core nursing curriculum. Nursing administrators in areas that use palliative sedation should enforce good nursing clinical practice as recommended by international practice guidelines, such as those of the European Association for Palliative Care.

Surgeons' Perceived Barriers to Palliative and End-of-Life Care: A Mixed Methods Study of a Surgical Society.

PubMed

Suwanabol, Pasithorn A; Reichstein, Ari C; Suzer-Gurtekin, Z Tuba; Forman, Jane; Silveira, Maria J; Mody, Lona; Morris, Arden M

2018-06-01

Nearly 20% of colorectal cancer (CRC) patients present with potentially incurable (Stage IV) disease, yet their physicians do not integrate cancer treatment with palliative care. Compared with patients treated by primary providers, surgical patients with terminal diseases are significantly less likely to receive palliative or end-of-life care. To describe surgeon perspectives on palliative and end-of-life care for patients with Stage IV CRCs. This is a convergent mixed methods study using a validated survey instrument from the Critical Care Peer Workgroup of the Robert Wood Johnson Foundation's Promoting Excellence in End-of-Life Care Project with additional qualitative questions. Participants were all current, nonretired members of the American Society of Colon and Rectal Surgeons. Surgeon-perceived barriers to palliative and end-of-life care for patients with Stage IV CRCs were identified. Among 131 Internet survey respondents (response rate 16.5%), 76.1% reported no formal education in palliative care, and specifically noted inadequate training in techniques to forgo life-sustaining measures (37.9%) and communication (42.7%). Over half (61.8%) of surgeons cited unrealistic expectations among patients and families as a barrier to care, which also limited discussion of palliation. At the system level, absence of documentation, appropriate processes, and culture hindered the initiation of palliative care. Thematic analysis of open-ended questions confirmed and extended these findings through the following major barriers to palliative and end-of-life care: (1) surgeon knowledge and training; (2) communication challenges; (3) difficulty with prognostication; (4) patient and family factors encompassing unrealistic expectations and discordant preferences; and (5) systemic issues including culture and lack of documentation and appropriate resources. Generalizability is limited by the small sample size inherent to Internet surveys, which may contribute to selection bias. Surgeons valued palliative and end-of-life care but reported multilevel barriers to its provision. These data will inform strategies to reduce these perceived barriers.

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.

[Comparison of treatments in patients with inoperable stage IV advanced esophageal cancer].

PubMed

Lee, Gyu Jin; Park, Moo In; Gwoo, Sangeon; Jung, Hyun Joo; Kim, Joo Hoon; Park, Seun Ja; Moon, Won; Kim, Hyung Hun; Kim, Yang Soo; Park, Sung Dal; Jeong, Tae Sig

2012-04-01

The aim of this study was to compare palliative treatments such as chemotherapy, chemoradiotherapy or radiotherapy with best supportive care in patients with inoperable advanced esophageal cancer. A total of 67 patients with inoperable advanced esophageal cancer visiting Kosin University Gospel Hospital between January 2000 and July 2010 were included in a retrospective analysis. Patients were categorized as having palliative treatment or best supportive care to compare their prognosis. The median survival was 6.4 months in 67 patients. There was significant difference in median survival between the palliative and best supportive treatment (9.8 months vs. 4.5 months, p=0.01). The patients who underwent palliative treatment had superior 1-year and 3-year overall survival rate than those with best supportive treatment (27%, 10% vs. 5%, 5%, respectively). The 1-year and 3-year overall survival rate of palliative treatment was 18% (1-year overall survival rate) in chemotherapy, 33% (1-year overall survival rate) in radiotherapy, 45% and 9% in concurrent chemoradiotherapy, and 20% and 20% in sequential chemoradiotherapy, respectively. These results may suggest that palliative treatments are more effective than best supportive care. Further prospective studies are still needed to elucidate beneficial effect of palliative treatments on inoperable advanced esophageal cancer.

[Palliative care pathways of older patients].

PubMed

Zubieta, Lourdes; Hébert, Réjean; Raîche, Michel

To determine the palliative care pathways of older patients in Sherbrooke, Qc by examining their transfers to other facilities. This analysis was conducted by linking 3 databases: emergency department, hospitalizations and nursing homes. The study period ranged from January 2011 to December 2015. SPSS was used for statistical analysis. The study only included palliative care patients. 25% of patients waited less than 7 days for transfer, and 74% waited less than 3 weeks. 64.9% of patients were transferred to a long-term facility for dependent adults (LTF), 15.2% returned home or were transferred to private accommodation, and 15.9% were transferred to an intermediate care facility. One-half of patients subsequently changed facility, mainly those in homes or intermediate care. Palliative care patient bed occupation rates represented 1% of available bed-days and less than 2% of total beds for 86.4% of days. Only 12% of patients returned to hospital within 90 days after discharge. The number of beds occupied by palliative care patients does not seem to disrupt the hospital capacity. The majority of the palliative care patients were well managed, as reflected by the low readmission rate. Our results indicate good management of transfers and an adequate supply of long-term care facilities and home services.

Prediction of appropriate timing of palliative care for older adults with non-malignant life-threatening disease: a systematic review.

PubMed

Coventry, Peter A; Grande, Gunn E; Richards, David A; Todd, Chris J

2005-05-01

most people in contemporary western society die of the chronic diseases of old age. Whilst palliative care is appropriate for elderly patients with chronic, non-malignant disease, few of these patients access such care compared with cancer patients. Objective referral criteria based on accurate estimation of survival may facilitate more timely referral of non-cancer patients most appropriate for specialist palliative care. to identify tools and predictor variables that might aid clinicians estimate survival and assess palliative status in non-cancer patients aged 65 years and older. systematic review and quality assessment using criteria modified from the literature. 11 studies that evaluated prognoses in hospitalised and community-based older adults with non-malignant disease were identified. Key generic predictors of survival were increased dependency of activities of daily living, presence of comorbidities, poor nutritional status and weight loss, and abnormal vital signs and laboratory values. Disease-specific predictors of survival were identified for dementia, chronic obstructive pulmonary disorder and congestive heart failure. No study evaluated the relationship between survival and palliative status. prognostic models that attempt to estimate survival of < or = 6 months in non-cancer patients have generally poor discrimination, reflecting the unpredictable nature of most non-malignant disease. However, a number of generic and disease-specific predictor variables were identified that may help clinicians identify older, non-cancer patients with poor prognoses and palliative care needs. Simple, well-validated prognostic models that provide clinicians with objective measures of palliative status in non-cancer patients are needed. Additionally, research that evaluates the effect of general and specialist palliative care on psychosocial outcomes in non-cancer patients and their carers is needed.

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.

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 ...

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.

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

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.

Interventions geared towards strengthening the health system of Namibia through the integration of palliative care.

PubMed

Freeman, Rachel; Luyirika, Emmanuel Bk; Namisango, Eve; Kiyange, Fatia

2016-01-01

The high burden of non-communicable diseases and communicable diseases in Africa characterised by late presentation and diagnosis makes the need for palliative care a priority from the point of diagnosis to death and through bereavement. Palliative care is an intervention that requires a multidisciplinary team to address the multifaceted needs of the patient and family. Thus, its development takes a broad approach that involves engaging all key stakeholders ranging from policy makers, care providers, educators, the public, patients, and families. The main focus of stakeholder engagement should address some core interventions geared towards improving knowledge and awareness, strengthening skills and attitudes about palliative care. These interventions include educating health and allied healthcare professionals on the palliative care-related problems of patients and best practices for care, explaining palliative care as a clinical and holistic discipline and demonstrating its effectiveness, the need to include palliative care into national policies, strategic plans, training curriculums of healthcare professionals and the engagement of patients, families, and communities. Interventions from a five-year programme that was aimed at strengthening the health system of Namibia through the integration of palliative care for people living with HIV and AIDS and cancer in Namibia are shared. This article illustrates how a country can implement the World Health Organisation's public health strategy for developing palliative care services, which recommends four pillars: government policy, education, drug availability, and implementation.

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.

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.

Vitamin "G"arden: a qualitative study exploring perception/s of horticultural therapy on a palliative care ward.

PubMed

Masel, Eva Katharina; Trinczek, Helena; Adamidis, Feroniki; Schur, Sophie; Unseld, Matthias; Kitta, Anna; Kirchheiner, Kathrin; Steininger, Birgit; Meixner-Katzmann, Karoline; Watzke, Herbert Hans

2018-06-01

In a palliative care setting, the preservation of quality of life is of particular importance. Horticultural therapy (HT) is reported as an excellent way to improve physical as well as psychological well-being, reduce levels of anxiety and depression, and promote social interaction. The use of horticultural interventions in palliative care has not yet been explored. The aim of this study was to explore the effects of HT in patients and team members on a palliative care ward. This study was based on a qualitative methodology, comprising 20 semistructured interviews with 15 advanced cancer patients participating in HT and with 5 members of the palliative care team. Interviews were analyzed using NVivo 10 software based on thematic analysis. The results revealed the following themes: (1) well-being, (2) variation of clinical routine, (3) creation, and (4) building relationships. Patients experienced positive stimulation through HT, were distracted from daily clinical routines, enjoyed creative work, and were able to build relationships with other patients. HT was also welcomed by the members of the palliative care team. Thirty-six percent of the patients did not meet the inclusion criteria, and 45% could not participate in the second or third HT session. Our study showed that the availability of HT was highly appreciated by the patients as well as by the palliative care team. Nevertheless, the dropout rate was high, and therefore, it might be more feasible to integrate green spaces into palliative care wards.

Development of a questionnaire to measure the key attributes of the community palliative care specialist nurse role.

PubMed

Cameron, Dee; Johnston, Bridget

2015-02-01

Recent worldwide economic events have forced an examination of the nurse's contribution to high-quality, effective, person-centred care. Since the role of specialist nurses is considered one of the least understood or valued developments in nursing, specialist nurses must demonstrate their contribution to quality, person-centred health care. To develop a questionnaire which aims to measure the quality of care provided by palliative care specialist nurses from the patients' perspective and to undertake initial validation. The process of questionnaire development involved six phases including systematic literature reviews, patient advisory groups and expert panel reviews, each of which contributed to the questionnaire face and content validity. Johnston's Expert Palliative Care Nurse Model (2002; 2005) provided an evidence-based framework for the development of the questionnaire, and enabled the identification of the key attributes of the palliative care specialist nurse role, thereby providing the themes on which to base the questionnaire. The Quality Measure for Palliative Nursing, a questionnaire, was developed. The themes identified in the questionnaire--personal characteristics, communication skills, knowledge, relationship with patient and providing comfort--aim to facilitate measurement of the quality of care provided by palliative care specialist nurses. Designed for use by palliative patients the Quality Measure for Palliative Nursing is a one-page questionnaire comprising of 15 questions. The Quality Measure for Palliative Nursing is unique since it aims to measure the quality of care provided by community palliative care specialist nurses, and could also be used to measure patient satisfaction with the quality of care provided. Further testing is recommended to ensure that this questionnaire can provide reliable and valid results.

Palliative Care Disincentives in CKD: Changing Policy to Improve CKD Care.

PubMed

Tamura, Manjula Kurella; O'Hare, Ann M; Lin, Eugene; Holdsworth, Laura M; Malcolm, Elizabeth; Moss, Alvin H

2018-06-01

The dominant health delivery model for advanced chronic kidney disease (CKD) and end-stage renal disease (ESRD) in the United States, which focuses on provision of dialysis, is ill-equipped to address many of the needs of seriously ill patients. Although palliative care may address some of these gaps in care, its integration into advanced CKD care has been suboptimal due to several health system barriers. These barriers include uneven access to specialty palliative care services, underdeveloped models of care for seriously ill patients with advanced CKD, and misaligned policy incentives. This article reviews policies that affect the delivery of palliative care for this population, discusses reforms that could address disincentives to palliative care, identifies quality measurement issues for palliative care for individuals with advanced CKD and ESRD, and considers potential pitfalls in the implementation of new models of integrated palliative care. Reforming health care delivery in ways that remove policy disincentives to palliative care for patients with advanced CKD and ESRD will fill a critical gap in care. Copyright © 2018 National Kidney Foundation, Inc. Published by Elsevier Inc. All rights reserved.

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.

Strange Bedfellows No More: How Integrated Stem-Cell Transplantation and Palliative Care Programs Can Together Improve End-of-Life Care.

PubMed

Levine, Deena R; Baker, Justin N; Wolfe, Joanne; Lehmann, Leslie E; Ullrich, Christina

2017-09-01

In the intense, cure-oriented setting of hematopoietic stem-cell transplantation (HSCT), delivery of high-quality palliative and end-of-life care is a unique challenge. Although HSCT affords patients a chance for cure, it carries a significant risk of morbidity and mortality. During HSCT, patients usually experience high symptom burden and a significant decrease in quality of life that can persist for long periods. When morbidity is high and the chance of cure remote, the tendency after HSCT is to continue intensive medical interventions with curative intent. The nature of the complications and overall condition of some patients may render survival an unrealistic goal and, as such, continuation of artificial life-sustaining measures in these patients may prolong suffering and preclude patient and family preparation for end of life. Palliative care focuses on the well-being of patients with life-threatening conditions and their families, irrespective of the goals of care or anticipated outcome. Although not inherently at odds with HSCT, palliative care historically has been rarely offered to HSCT recipients. Recent evidence suggests that HSCT recipients would benefit from collaborative efforts between HSCT and palliative care services, particularly when initiated early in the transplantation course. We review palliative and end-of-life care in HSCT and present models for integrating palliative care into HSCT care. With open communication, respect for roles, and a spirit of collaboration, HSCT and palliative care can effectively join forces to provide high-quality, multidisciplinary care for these highly vulnerable patients and their families.

Development of a practice tool for community-based nurses: the Heart Failure Palliative Approach to Care (HeFPAC).

PubMed

Strachan, Patricia H; Joy, Cathy; Costigan, Jeannine; Carter, Nancy

2014-04-01

Patients living with advanced heart failure (HF) require a palliative approach to reduce suffering. Nurses have described significant knowledge gaps about the disease-specific palliative care (PC) needs of these patients. An intervention is required to facilitate appropriate end-of-life care for HF patients. The purpose of this study was to develop a user-friendly, evidence-informed HF-specific practice tool for community-based nurses to facilitate care and communication regarding a palliative approach to HF care. Guided by the Knowledge to Action framework, we identified key HF-specific issues related to advanced HF care provision within the context of a palliative approach to care. Informed by current evidence and subsequent iterative consultation with community-based and specialist PC and HF nurses, a pocket guide tool for community-based nurses was created. We developed the Heart Failure Palliative Approach to Care (HeFPAC) pocket guide to promote communication and a palliative approach to care for HF patients. The HeFPAC has potential to improve the quality of care and experiences for patients with advanced HF. It will be piloted in community-based practice and in a continuing education program for nurses. The HeFPAC pocket guide offers PC nurses a concise, evidence-informed and practical point-of care tool to communicate with other clinicians and patients about key HF issues that are associated with improving disease-specific HF palliative care and the quality of life of patients and their families. Pilot testing will offer insight as to its utility and potential for modification for national and international use.

Terminally ill patients as customers: the patient's perspective.

PubMed

Seibel, Katharina; Valeo, Sara Celestina; Xander, Carola; Adami, Sandra; Duerk, Thorsten; Becker, Gerhild

2014-01-01

Consumerism in health care defines patients as self-determined, rational customers. Yet, it is questionable whether vulnerable patients, such as the terminally ill, also fulfill these criteria. Vulnerable contexts and the patient's perspective on being a customer remain relatively unexplored. The present study addresses this research gap by analyzing terminally ill patients' views on being customers. To explore the ways in which patients in palliative care refer to themselves as patients/customers, and how the patients' concepts of self-determination are related to their attitudes toward the patient/customer role. Qualitative interviews were conducted. Data were analyzed in three steps: narrative analysis, thematic content analysis, and typology construction. Researchers recruited 25 patients via the Department of Palliative Care, University Medical Center Freiburg, Germany. In many ways, palliative patients contradict the image of a self-determined customer. The palliative patient role is characterized by the concept of relational self-determination rather than an unrestricted self-determination. Self-attribution as a customer still occurs when positively associated with a person-centered, individualized treatment. Thus, the customer and patient role overlap within the palliative care setting because of the focus on the individual. The idealized customer role cannot be arbitrarily applied to all medical fields. Palliative patients are dependent on the physician, regardless of whether the customer or patient role is preferred. Hence, self-determination must be understood in relational terms, and physicians must recognize their crucial role in promoting patients' self-determination in the context of shared decision-making.

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 ...

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.

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

PubMed

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

2017-01-01

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

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.

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

PubMed Central

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

2014-01-01

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

Quality of care in palliative sedation: audit and compliance monitoring of a clinical protocol.

PubMed

Benitez-Rosario, Miguel Angel; Castillo-Padrós, Manuel; Garrido-Bernet, Belén; Ascanio-León, Belen

2012-10-01

The European Association for Palliative Care and the U.S. National Hospice and Palliative Care Organization have published statements that recommend an audit of palliative sedation practices. The aim was to assess the feasibility of a quality care project in palliative sedation. We carried out an audit of adherence to a guideline regarding palliative sedation, undertaken as a yearly assessment during two years, of a sample of patient charts. With an audit tool, the charts were evaluated as to the presence of the ethical sedation checklist, information that justified palliative sedation, patient and/or family agreement, and the appropriateness of treatment in concordance with the clinical protocol. An educational program and result feedback meetings were used as the implementation strategy. Roughly 25% of the medical charts of patients who died in the palliative care unit were evaluated, 94 in 2007 and 110 in 2008. In 2007 and 2008, 63% and 57% of the patients, respectively, whose median age was 65 years, were sedated, with a median length of two days. The main reason for sedation was agitation concomitant with respiratory failure in roughly 60% and 75% of the cases in 2007 and 2008, respectively. Agreement of the patient/family about sedation was collected from 100% of the cases. The concordance of procedures with the sedation guideline was 100% in both years. Our quality-of-care strategy was shown to obtain a higher level of compliance with the palliative sedation guideline for at least two years. Copyright © 2012 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

Patterns of Practice in Palliative Radiotherapy for Painful Bone Metastases: Impact of a Regional Rapid Access Clinic on Access to Care

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

Wu, Jackson S.Y., E-mail: jackson.wu@cancerboard.ab.c; Kerba, Marc; Wong, Rebecca K.S.

2010-10-01

Purpose: External beam radiotherapy (RT) is commonly indicated for the palliation of symptomatic bone metastases, but there is evidence of underutilization of this treatment modality in palliative care for cancer populations. This study was conducted to investigate factors that influenced the use of palliative RT services at a regional comprehensive cancer center. Methods and Materials: A cohort of patients with radiographically confirmed bone metastases and first-time users of palliative RT between 2003 and 2005 was retrospectively reviewed from the time of initial diagnosis of bone metastases to death or last follow-up. Type of radiation treatment service provider used (rapid accessmore » or routine access) and patient-, tumor-, and treatment-related factors were analyzed for their influences on the number of treatment courses given over the duration of disease. Results: A total of 887 patients received 1,354 courses of palliative RT for bone metastases at a median interval of 4.0 months between courses. Thirty-three percent of patients required more than one RT course. Increased age and travel distance reduced the likelihood and number of treatment courses, while service through a rapid access clinic was independently associated with an increase in subsequent use of palliative RT. Conclusions: A rapid access service model for palliative RT facilitated access to RT. Travel distance and other factors remained substantial barriers to use of palliative RT services. The pattern of practice suggests an unmet need for symptom control in patients with bone metastases.« less

Improving Quality of Care for Seriously Ill Patients: Opportunities for Hospitalists.

PubMed

Fail, Robin E; Meier, Diane E

2018-03-01

As the shift to value-based payment accelerates, hospitals are under increasing pressure to deliver high-quality, efficient services. Palliative care approaches improve quality of life and family well-being, and in doing so, reduce resource utilization and costs. Hospitalists frequently provide palliative care interventions to their patients, including pain and symptom management and engaging in conversations with patients and families about the realities of their illness and treatment plans that align with their priorities. Hospitalists are ideally positioned to identify patients who could most benefit from palliative care approaches and often refer the most complex cases to specialty palliative care teams. Though hospitalists are frequently called upon to provide palliative care, most lack formal training in these skills, which have not typically been included in medical education. Additional training in communication, safe and effective symptom management, and other palliative care knowledge and skills are available in both in-person and online formats. © 2017 Society of Hospital Medicine.

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 selection process failed to identify any studies that were eligible for inclusion in the review. There is currently a lack of published evidence to establish which interventions and strategies are most effective in delivering services to patients diagnosed with palliative EG cancer in terms of service structure, process and delivery.

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

PubMed

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

2015-10-01

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

Pattern and Predictors of Outpatient Palliative Care Referral Among Thoracic Medical Oncologists.

PubMed

Hui, David; Kilgore, Kelly; Park, Minjeong; Liu, Diane; Kim, Yu Jung; Park, Ji Chan; Fossella, Frank; Bruera, Eduardo

2018-06-12

There is significant variation in access to palliative care. We examined the pattern of outpatient palliative care referral among thoracic medical oncologists and identified oncologist characteristics associated with greater referral. We retrieved data on all patients who died of advanced thoracic malignancies at our institution between January 1, 2007, and December 31, 2012. Using median as a cutoff, we defined two groups (high-referring and low-referring oncologists) based on their frequency of referral. We examined various oncologist- and patient-related characteristics associated with outpatient referral. Of 1,642 decedents, 444 (27%) had an outpatient palliative care referral. The median proportion of referral among 26 thoracic oncologists was 30% (range 9%-45%; median proportion of high-referring 37% vs. low-referring 24% when divided into two groups at median). High-referring oncologists were significantly younger (age 45 vs. 56) than low-referring oncologists; they were also significantly more likely to refer patients earlier (median interval between oncology consultation and palliative care consultation 90 days vs. 170 days) and to refer those without metastatic disease (7% vs. 2%). In multivariable mixed-effect logistic regression, younger oncologists (odds ratio [OR] = 0.97 per year increase, 95% confidence interval [CI] 0.95-0.995), younger patients (OR = 0.98 per year increase, 95% CI 0.97-0.99), and nonmetastatic disease status (OR = 0.48, 95% CI 0.29-0.78) were significantly associated with outpatient palliative care referral. The pattern of referral to outpatient palliative care varied widely among thoracic oncologists. Younger oncologists were not only referring a higher proportion of patients, but also referring patients earlier in the disease trajectory. This retrospective cohort study found that younger thoracic medical oncologists were significantly more likely to refer patients to outpatient palliative care and to do so earlier in the disease trajectory compared with older oncologists, even after adjusting for other known predictors such as patient demographics. The findings highlight the role of education to standardize palliative care access and imply that outpatient palliative care referral is likely to continue to increase with a shifting oncology workforce. © AlphaMed Press 2018.

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.

Therapeutic tin-117m compositions

DOEpatents

Srivastava, Suresh C.; Meinken, George E.; Mausner, Leonard F.; Atkins, Harold L.

2003-01-01

The invention provides a method for the palliation of bone pain due to cancer by the administration of a unique dosage of a tin-117m (Sn-117m) stannic chelate complex in a pharmaceutically acceptable composition. In addition, the invention provides a method for simultaneous palliation of bone pain and radiotherapy in cancer patients using compositions containing Sn-117m chelates. The invention also provides a method for palliating bone pain in cancer patients using Sn-117m-containing compositions and monitoring patient status by imaging the distribution of the Sn-117m in the patients. Also provided are pharmaceutically acceptable compositions containing Sn-117m chelate complexes for the palliation of bone pain in cancer patients.

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

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

PubMed

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

2013-05-01

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

Development of Palliative Care in China: A Tale of Three Cities

PubMed Central

Yin, Zhenyu; Li, Jinxiang; Ma, Ke; Ning, Xiaohong; Chen, Huiping; Fu, Haiyan; Zhang, Haibo; Wang, Chun; Bruera, Eduardo

2017-01-01

Abstract Background. China is the most populous country in the world, but access to palliative care is extremely limited. A better understanding of the development of palliative care programs in China and how they overcome the barriers to provide services would inform how we can further integrate palliative care into oncology practices in China. Here, we describe the program development and infrastructure of the palliative care programs at three Chinese institutions, using these as examples to discuss strategies to accelerate palliative care access for cancer patients in China. Methods. Case study of three palliative care programs in Chengdu, Kunming, and Beijing. Results. The three examples of palliative care delivery in China ranged from a comprehensive program that includes all major branches of palliative care in Chengdu, a program that is predominantly inpatient‐based in Kunming, and a smaller program at an earlier stage of development in Beijing. Despite the numerous challenges related to the limited training opportunities, stigma on death and dying, and lack of resources and policies to support clinical practice, these programs were able to overcome many barriers to offer palliative care services to patients with advanced diseases and to advance this discipline in China through visionary leadership, collaboration with other countries to acquire palliative care expertise, committed staff members, and persistence. Conclusion. Palliative care is limited in China, although a few comprehensive programs exist. Our findings may inform palliative care program development in other Chinese hospitals. Implications for Practice. With a population of 1.3 billion, China is the most populous country in the world, and cancer is the leading cause of death. However, only 0.7% of hospitals offer palliative care services, which significantly limits palliative care access for Chinese cancer patients. Here, we describe the program development and infrastructure of three palliative care programs in China, using these as examples to discuss how they were able to overcome various barriers to implement palliative care. Lessons from these programs may help to accelerate the progress of palliative cancer care in China. PMID:28739870

Drug treatment at the end of life: an epidemiologic study in nursing homes.

PubMed

Jansen, Kristian; Schaufel, Margrethe Aase; Ruths, Sabine

2014-12-01

To examine drug treatment in nursing home patients at the end of life, and identify predictors of palliative drug therapy. A historical cohort study. Three urban nursing homes in Norway. All patients admitted from January 2008 and deceased before February 2013. Drug prescriptions, diagnoses, and demographic data were collected from electronic patient records. Palliative end-of-life drug treatment was defined on the basis of indication, drug, and formulation. 524 patients were included, median (range) age at death 86 (19-104) years, 59% women. On the day of death, 99.4% of the study population had active prescriptions; 74.2% had palliative drugs either alone (26.9%) or concomitantly with curative/preventive drugs (47.3%). Palliative drugs were associated with nursing home, length of stay > 16 months (AOR 2.10, 95% CI 1.12-3.94), age (1.03, 1.005-1.05), and a diagnosis of cancer (2.12, 1.19-3.76). Most initiations of palliative drugs and withdrawals of curative/preventive drugs took place on the day of death. Palliative drug therapy and drug therapy changes are common for nursing home patients on the last day of life. Improvements in end-of-life care in nursing homes imply addressing prognostication and earlier response to palliative needs.

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.

Improving delirium recognition and assessment for people receiving inpatient palliative care: a mixed methods meta-synthesis.

PubMed

Hosie, Annmarie; Agar, Meera; Lobb, Elizabeth; Davidson, Patricia M; Phillips, Jane

2017-10-01

Delirium is a serious acute neurocognitive condition frequently occurring for hospitalized patients, including those receiving care in specialist palliative care units. There are many delirium evidence-practice gaps in palliative care, including that the condition is under-recognized and challenging to assess. To report the meta-synthesis of a research project investigating delirium epidemiology, systems and nursing practice in palliative care units. The Delirium in Palliative Care (DePAC) project was a two-phase sequential transformative mixed methods design with knowledge translation as the theoretical framework. The project answered five different research questions about delirium epidemiology, systems of care and nursing practice in palliative care units. Data integration and metasynthesis occurred at project conclusion. There was a moderate to high rate of delirium occurrence in palliative care unit populations; and palliative care nurses had unmet delirium knowledge needs and worked within systems and team processes that were inadequate for delirium recognition and assessment. The meta-inference of the DePAC project was that a widely-held but paradoxical view that palliative care and dying patients are different from the wider hospital population has separated them from the overall generation of delirium evidence, and contributed to the extent of practice deficiencies in palliative care units. Improving palliative care nurses' capabilities to recognize and assess delirium will require action at the patient and family, nurse, team and system levels. A broader, hospital-wide perspective would accelerate implementation of evidence-based delirium care for people receiving palliative care, both in specialist units, and the wider hospital setting. Copyright © 2017 Elsevier Ltd. All rights reserved.

[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.

Palliative Care for Patients with Nonmalignant Respiratory Disease

PubMed Central

Gupta, Nishkarsh; Garg, Rakesh; Kumar, Vinod; Bharati, Sachidanand Jee; Mishra, Seema; Bhatnagar, Sushma

2017-01-01

Nonmalignant respiratory diseases are chronic and life-limiting conditions that need holistic palliative care. Such patients not only have a variety of physical symptoms such as dyspnea, pain, cough, depression, and anxiety, but also have a number of psychosocial and spiritual issues, which are not addressed to by us. This leads to a poor quality of life. Hence, these patients require supportive palliative care to relieve their sufferings, but unfortunately such care is not available to them in our country. In this article, we have tried to discuss the barriers to the provision of palliative care to such patients and suggested some measures to overcome them. PMID:28827944

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

PubMed

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

2016-05-01

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

[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.

[Palliative care in the intensive cardiac care unit: a new competence for the cardiac intensivist].

PubMed

Romanò, Massimo; Bertona, Roberta; Zorzoli, Federica; Villani, Rosvaldo

2017-10-01

Admissions to the intensive care unit at the end of life of patients with chronic non-malignant diseases are increasing. This involves the need for the development of palliative care culture and competence, also in the field of intensive cardiology. Palliative care should be implemented in the treatment of all patients with critical stages of disease, irrespective of prognosis, in order to improve the quality of care at the end of life.This review analyzes in detail the main clinical, ethical and communicational issues to move toward the introduction of basics of palliative care in cardiac intensive care units. It outlines the importance of shared decision-making with the patient and his family, with special attention to withholding/withdrawing of life-sustaining treatments, palliative sedation, main symptom control, patient and family psychological support.

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.

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

Trends of earlier palliative care consultation in advanced cancer patients receiving palliative radiation therapy.

PubMed

Chang, Sanders; Sigel, Keith; Goldstein, Nathan E; Wisnivesky, Juan; Dharmarajan, Kavita V

2018-06-06

The American Society of Clinical Oncology recommends that all patients with metastatic disease receive dedicated palliative care (PC) services early in their illness, ideally via interdisciplinary care teams. We investigated the time trends of specialty palliative care consultations from the date of metastatic cancer diagnosis among patients receiving palliative radiation therapy (PRT). A shorter time interval between metastatic diagnosis and first PC consultation suggests earlier involvement of palliative care in a patient's life with metastatic cancer. In this IRB-approved retrospective analysis, patients treated with PRT for solid tumors (bone and brain) at a single tertiary care hospital between 2010 and 2016 were included. Cohorts were arbitrarily established by metastatic diagnosis within approximately two-year intervals: (1) 1/1/2010-3/27/2012; (2) 3/28/2012-5/21/2014; and (3) 5/22/2014-12/31/2016. Cox-proportional hazards regression modelling was used to compare trends of PC consultation among cohorts. Of 284 patients identified, 184 patients received PC consultation, whereas 15 patients died before receiving a PC consult. Median follow-up time until an event or censor was 257 days (range: 1,900). Patients in the most recent cohort had a shorter median time to first PC consult (57 days) compared to those in the first (374 days) and second (186 days) cohorts. On multivariable analysis, patients in the third cohort were more likely to undergo a PC consultation earlier in their metastatic illness (HR: 1.8, 95% CI: 1.2,2.8). Over a six-year period, palliative care consultation occurred earlier for metastatic patients treated with PRT at our institution. Copyright © 2018. Published by Elsevier Inc.

Reflection on stroke deaths and end-of-life stroke care.

PubMed

Quadri, Syed Z; Huynh, Thang; Cappelen-Smith, Cecilia; Wijesuriya, Nirupama; Mamun, Abul; Beran, Roy G; McDougall, Alan J; Cordato, Dennis

2018-03-01

The benefit of palliative care referral for severe stroke patients on end-of-life care pathway (EOLCP) is increasingly recognised. Palliative care provides assistance with symptom management and transition to end-of-life care. Advance care planning (ACP) may help accommodate patient/family expectations and guide management. This is a retrospective study of all stroke deaths (2014-2015) at Liverpool Hospital, Sydney, Australia. Data examined included age, comorbidities, living arrangements, pre-existing ACP, palliative care referral rates and 'survival time'. In total, 123 patient (mean age ± SD = 76 ± 13 years) deaths were identified from 1067 stroke admissions (11.5% mortality); 64 (52%) patients had ischaemic stroke and 59 (48%) intracerebral haemorrhage (ICH), and 40% suffered a prior stroke, and 43% required a carer at home or were in an aged care facility. Survival time from admission was significantly longer in patients with ischaemic stroke compared to intracerebral haemorrhage (median, interquartile range [IQR]: 9.5 [18] vs 2 [4] days, P < 0.001). Only two patients had pre-existing ACP; 44% of patients were referred to palliative care and 41% were commenced on dedicated EOLCP. Palliative care referral was less likely in patients who died under neurosurgery. EOLCP were significantly less likely to be commenced in patients who underwent acute intervention or were not referred to palliative care. In this cohort, palliative care referral and EOLCP were commenced in less than 50% of patients, highlighting significant variations in clinical care. These data support the need to promote awareness of ACP, particularly in patients with prior stroke or significant comorbidities. This may help reduce potentially futile invasive investigations and treatment. © 2017 Royal Australasian College of Physicians.

Interventions geared towards strengthening the health system of Namibia through the integration of palliative care

PubMed Central

Freeman, Rachel; Luyirika, Emmanuel BK; Namisango, Eve; Kiyange, Fatia

2016-01-01

The high burden of non-communicable diseases and communicable diseases in Africa characterised by late presentation and diagnosis makes the need for palliative care a priority from the point of diagnosis to death and through bereavement. Palliative care is an intervention that requires a multidisciplinary team to address the multifaceted needs of the patient and family. Thus, its development takes a broad approach that involves engaging all key stakeholders ranging from policy makers, care providers, educators, the public, patients, and families. The main focus of stakeholder engagement should address some core interventions geared towards improving knowledge and awareness, strengthening skills and attitudes about palliative care. These interventions include educating health and allied healthcare professionals on the palliative care-related problems of patients and best practices for care, explaining palliative care as a clinical and holistic discipline and demonstrating its effectiveness, the need to include palliative care into national policies, strategic plans, training curriculums of healthcare professionals and the engagement of patients, families, and communities. Interventions from a five-year programme that was aimed at strengthening the health system of Namibia through the integration of palliative care for people living with HIV and AIDS and cancer in Namibia are shared. This article illustrates how a country can implement the World Health Organisation’s public health strategy for developing palliative care services, which recommends four pillars: government policy, education, drug availability, and implementation. PMID:27563348

Distribution and sharing of palliative care costs in rural areas of Canada.

PubMed

Dumont, Serge; Jacobs, Philip; Turcotte, Véronique; Turcotte, Stéphane; Johnston, Grace

2014-01-01

Few data are available on the costs occurring during the palliative phase of care and on the sharing of these costs in rural areas. This study aimed to evaluate the costs related to all resources used by rural palliative care patients and to examine how these costs were shared between the public healthcare system (PHCS), patients' families, and not-for-profit organizations (NFPOs). A prospective longitudinal study was undertaken of 82 palliative care patients and their main informal caregivers in rural areas of four Canadian provinces. Telephone interviews were completed at two-week intervals. The mean total cost per patient for a six-month participation in a palliative care program was CA$31,678 +/- 1,160. A large part of this cost was attributable to inpatient hospital stays and was assumed by the PHCS. The patient's family contributed less than a quarter of the mean total cost per patient, and this was mainly attributable to caregiving time.

Hypofractionated Palliative Radiotherapy with Concurrent Radiosensitizing Chemotherapy for Advanced Head and Neck Cancer Using the "QUAD-SHOT Regimen".

PubMed

Gamez, Mauricio E; Agarwal, Manuj; Hu, Kenneth S; Lukens, John N; Harrison, Louis B

2017-02-01

To analyze the outcomes using the hypofractionated palliative radiotherapy regimen "QUAD-Shot" with concurrent radiosensitizing chemotherapy for advanced head and neck cancer. We analyzed twenty-one patients with newly-diagnosed or recurrent head and neck cancer treated with palliative hypofractionated concurrent chemoradiation using the QUAD-Shot regimen. All patients received at least one cycle of RT, with sixteen patients (76%) completing all three cycles. 85.7 % of patients had objective response to therapy with five patients (23.8%) demonstrating complete response (CR) and thirteen patients (61.9%) demonstrating partial response (PR). Palliation of symptoms was achieved in all (100%) of the sixteen patients that completed the three cycles. Median overall survival and median progression-free survival were 7 and 4 months, respectively. QUAD-Shot palliative radiation therapy coupled with radiosensitizing chemotherapy is efficacious and well-tolerated in patients with newly-diagnosed or recurrent head and neck cancer not amenable to curative therapy. Copyright© 2017, International Institute of Anticancer Research (Dr. George J. Delinasios), All rights reserved.

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 communication. It needs to be further evaluated in regard to practice evidence.

Effectiveness of the ACA (Availability, Current issues and Anticipation) training programme on GP-patient communication in palliative care; a controlled trial

PubMed Central

2013-01-01

Background Communicating effectively with palliative care patients has been acknowledged to be somewhat difficult, but little is known about the effect that training general practitioners (GPs) in specific elements of communication in palliative care might have. We hypothesized that GPs exposed to a new training programme in GP-patient communication in palliative care focusing on availability of the GP for the patient, current issues the GP should discuss with the patient and anticipation by the GP of various scenarios (ACA), would discuss more issues and become more skilled in their communication with palliative care patients. Methods In this controlled trial among GPs who attended a two-year Palliative Care Peer Group Training Course in the Netherlands only intervention GPs received the ACA training programme. To evaluate the effect of the programme a content analysis (Roter Interaction Analysis System) was performed of one videotaped 15-minute consultation of each GP with a simulated palliative care patient conducted at baseline, and one at 12 months follow-up. Both how the GP communicated with the patient (‘availability’) and the number of current and anticipated issues the GP discussed with the patient were measured quantitatively. We used linear mixed models and logistic regression models to evaluate between-group differences over time. Results Sixty-two GPs were assigned to the intervention and 64 to the control group. We found no effect of the ACA training programme on how the GPs communicated with the patient or on the number of issues discussed by GPs with the patient. The total number of issues discussed by the GPs was eight out of 13 before and after the training in both groups. Conclusion The ACA training programme did not influence how the GPs communicated with the simulated palliative care patient or the number of issues discussed by the GPs in this trial. Further research should evaluate whether this training programme is effective for GPs who do not have a special interest in palliative care and whether studies using outcomes at patient level can provide more insight into the effectiveness of the ACA training programme. Trial registration Current Controlled Trials ISRCTN56722368 PMID:23819723

Palliative care consultation, quality-of-life measurements, and bereavement for end-of-life care in patients with lung cancer: ACCP evidence-based clinical practice guidelines (2nd edition).

PubMed

Griffin, John P; Koch, Kathryn A; Nelson, Judith E; Cooley, Mary E

2007-09-01

To develop clinical practice guidelines for application of palliative care consultation, quality-of-life measurements, and appropriate bereavement activities for patients with lung cancer. To review the pertinent medical literature on palliative care consultation, quality-of-life measurements, and bereavement for patients with lung cancer, developing multidisciplinary discussions with authorities in these areas, and evolving written guidelines for end-of-life care of these patients. Palliative care consultation has developed into a new specialty with credentialing of experts in this field based on extensive experience with patients in end-of-life circumstances including those with lung cancer. Bereavement studies of the physical and emotional morbidity of family members and caregivers before, during, and after the death of a cancer patient have supported truthful communication, consideration of psychological problems, effective palliative care, understanding of the patient's spiritual and cultural background, and sufficient forewarning of impending death. Multidisciplinary investigations and experiences, with emphasis on consultation and delivery of palliative care, timely use of quality-of-life measurements for morbidities of treatment modalities and prognosis, and an understanding of the multifaceted complexities of the bereavement process, have clarified additional responsibilities of the attending physician.

Forensic nursing and the palliative approach to care: an empirical nursing ethics analysis.

PubMed

Wright, David Kenneth; Vanderspank-Wright, Brandi; Holmes, Dave; Skinner, Elise

2017-08-02

A movement is underway to promote a palliative approach to care in all contexts where people age and live with life-limiting conditions, including psychiatric settings. Forensic psychiatry nursing-a subfield of mental health nursing- focuses on individuals who are in conflict with the criminal justice system. We know little about the values of nurses working in forensic psychiatry, and how these values might influence a palliative approach to care for frail and aging patients. Interviews with four nurses working on one of two forensic units of a university-affiliated mental health hospital in an urban area of eastern Canada. Three specific values were found to guide forensic nurses in their care of aging patients that are commensurate with a palliative approach: hope, inclusivity, and quality of life. When we started this project, we wondered whether the culture of forensic nursing practice was antithetical to the values of a palliative approach. Instead, we found several parallels between forensic nurses' moral identities and palliative philosophy. These findings have implications for how we think about the palliative approach in contexts not typically associated with palliative care, but in which patients will increasingly age and die.

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.

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

PubMed

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

2016-01-01

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

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.

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

PubMed

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

2018-06-01

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

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

PubMed

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

2015-01-01

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

Methicillin-resistant Staphylococcus aureus in palliative care: A prospective study of Methicillin-resistant Staphylococcus aureus prevalence in a hospital-based palliative care unit.

PubMed

Schmalz, Oliver; Strapatsas, Tobias; Alefelder, Christof; Grebe, Scott Oliver

2016-07-01

Methicillin-resistant Staphylococcus aureus is a common organism in hospitals worldwide and is associated with morbidity and mortality. However, little is known about the prevalence in palliative care patients. Furthermore, there is no standardized screening protocol or treatment for patients for whom therapy concentrates on symptom control. Examining the prevalence of methicillin-resistant Staphylococcus aureus in palliative care patients as well as the level of morbidity and mortality. We performed a prospective study where methicillin-resistant Staphylococcus aureus screening was undertaken in 296 consecutive patients within 48 h after admission to our palliative care unit. Medical history was taken, clinical examination was performed, and the Karnofsky Performance Scale and Palliative Prognostic Score were determined. Prevalence of Methicillin-resistant Staphylococcus aureus was compared to data of general hospital patients. In total, 281 patients were included in the study having a mean age of 69.7 years (standard deviation = 12.9 years) and an average Karnofsky Performance Scale between 30% and 40%. The mean length of stay was 9.7 days (standard deviation = 7.6 days). A total of 24 patients were methicillin-resistant Staphylococcus aureus positive on the first swab. Median number of swabs was 2. All patients with a negative methicillin-resistant Staphylococcus aureus swab upon admission remained Methicillin-resistant Staphylococcus aureus negative in all subsequent swabs. Our study suggests that the prevalence of Methicillin-resistant Staphylococcus aureus among patients in an in-hospital palliative care unit is much higher than in other patient populations. © The Author(s) 2016.

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

PubMed

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

2018-03-01

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

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…

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.

Integration of legal aspects and human rights approach in palliative care delivery-the Nyeri Hospice model.

PubMed

Musyoki, David; Gichohi, Sarafina; Ritho, Johnson; Ali, Zipporah; Kinyanjui, Asaph; Muinga, Esther

2016-01-01

Palliative care is patient and family-centred care that optimises quality of life by anticipating, preventing, and treating suffering. Open Society Foundation public health program (2011) notes that people facing life-threatening illnesses are deeply vulnerable: often in severe physical pain, worried about death, incapacitation, or the fate of their loved ones. Legal issues can increase stress for patients and families and make coping harder, impacting on the quality of care. In the absence of a clear legal provision expressly recognising palliative care in Kenya, providers may face numerous legal and ethical dilemmas that affect the availability, accessibility, and delivery of palliative care services and commodities. In order to ensure positive outcomes from patients, their families, and providers, palliative care services should be prioritised by all and includes advocating for the integration of legal support into those services. Palliative care service providers should be able to identify the various needs of patients and their families including specific issues requiring legal advice and interventions. Access to legal services remains a big challenge in Kenya, with limited availability of specialised legal services for health-related legal issues. An increased awareness of the benefits of legal services in palliative care will drive demand for easily accessible and more affordable direct legal services to address legal issues for a more holistic approach to quality palliative care.

Effective palliation for advanced esophageal cancer using intralumenal irradiation.

PubMed

Makarewicz, R; Czechowicz, W; Kabacińska, R

1996-01-01

Palliative treatment by intracavitary irradiation alone has been used in 15 patients with advanced carcinoma of the esophagus. Most of them had already failed other palliative modalities including external irradiation, chemoradiotherapy, laserotherapy and dilatation. Intracavitary irradiation was carried out with a microSelectron HDR afterloading device and usually 22.5 Gy was given in three fractions repeated weekly. Up to three month after treatment, complete endoscopic regression was seen in 1 patient, partial endoscopic regression in 8 patients, no response in one and progressive disease in 5 patients. The median survival time is 6.2 months. There were not severe complications. We conclude that high dose rate intracavitary irradiation is a useful palliative modality in patients with advanced or recurrent esophageal cancer.

Internal Medicine Residents' Beliefs, Attitudes, and Experiences Relating to Palliative Care: A Qualitative Study.

PubMed

Kawaguchi, S; Mirza, R; Nissim, R; Ridley, J

2017-05-01

Internal medicine residents are frequently called upon to provide palliative care to hospitalized patients, but report feeling unprepared to do so effectively. Curricular development to enhance residents' palliative care skills and competencies requires an understanding of current beliefs, attitudes and learning priorities. We conducted a qualitative study consisting of semi-structured interviews with ten internal medicine residents to explore their understanding of and experiences with palliative care. All of the residents interviewed had a sound theoretical understanding of palliative care, but faced many challenges in being able to provide care in practice. The challenges described by residents were system-related, patient-related and provider-related. They identified several priority areas for further learning, and discussed ways in which their current education in palliative care could be enhanced. Our findings provide important insights to guide curricular development for internal medicine trainees. The top five learning priorities in palliative care that residents identified in our study were: 1) knowing how and when to initiate a palliative approach, 2) improving communication skills, 3) improving symptom management skills, 4) identifying available resources, and 5) understanding the importance of palliative care. Residents felt that their education in palliative care could be improved by having a mandatory rotation in palliative care, more frequent didactic teaching sessions, more case-based teaching from palliative care providers, opportunities to be directly observed, and increased support from palliative care providers after-hours.

Palliative care case managers in primary care: a descriptive study of referrals in relation to treatment aims.

PubMed

van der Plas, Annicka G M; Onwuteaka-Philipsen, Bregje D; Francke, Anneke L; Jansen, Wim J J; Vissers, Kris C; Deliens, Luc

2015-04-01

Three important elements of the World Health Organization (WHO) definition of palliative care are: 1) it includes patients who may have cure or life prolongation as treatment aims besides palliative care; 2) it is not exclusively for cancer patients; and 3) it includes attention to the medical, psychological, social, and spiritual needs of the patients and their families. Case managers (nurses with expertise in palliative care) may assist generalist primary care providers in delivery of good palliative care. This study investigates the referral of patients to case managers in primary care with regard to the three elements mentioned: diagnosis, treatment aims, and needs as reflected in reasons given for referral. In this cross-sectional survey in primary care among case managers and referrers to case management, case managers completed questionnaires for 687 patients; referrers completed 448 (65%). Most patients referred have a combination of treatment aims (69%). Life expectancy and functional status of patients are lower for those with a treatment aim of palliation. Almost all (96%) of those referred are cancer patients. A need for psychosocial support is frequently given as a reason for referral (66%) regardless of treatment aim. Referrals to case managers reflect two of three elements of the WHO definition. Mainly, patients are referred for support complementary to medical care, and relatively early in their disease trajectory. However, most of those referred are cancer patients. Thus, to fully reflect the definition, broadening the scope to reach other patient groups is important.

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).

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

PubMed

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

2017-06-01

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

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

PubMed

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

2018-01-01

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

[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.

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.

Integration of Palliative Care in the Context of Rapid Response

PubMed Central

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

2015-01-01

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

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.

Palliative Care Training in Cardiology Fellowship: A National Survey of the Fellows.

PubMed

Dabbouseh, Noura M; Kaushal, Shivtej; Peltier, Wendy; Johnston, Fabian M

2018-02-01

To address perspectives of cardiology fellows on the current state of palliative education and palliative and hospice resource utilization within their fellowship experiences. We conducted an online national survey of cardiology fellows during the 2015 to 2016 academic year. Survey questions aimed to assess perceived importance of palliative care education, level of palliative care education during fellowship, and the structure of palliative care support at respondent institutions. Responses were collected anonymously. A total of 519 programs, including subspecialty programs, were contacted. We received 365 responses, a number that represents roughly 14% of all cardiology fellows nationwide during the 2015 to 2016 academic year. Fellows reported discordance in the quality of education between general cardiology and palliative care principles as it relates to care of the patient approaching the end of life. Fellows infrequently received explicit training nor were observed or mentored in delivering end-of-life discussions. Respondents reported an underutilization of palliative care and hospice resources during fellowship training and also a perception that attending faculty were not routinely addressing goals of care. Our survey results highlight a need for enhanced palliative care and end-of-life training experiences for cardiology fellows and also suggest underutilization of hospice and palliative care resources for patients with advanced cardiac diseases. These findings create a platform for future work that might: (1) confirm this training deficit, (2) lead to exploration of educational models that could reconcile this deficit, and (3) potentially help improve palliative care support for patients and families facing advanced heart disease.

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.

Redefining diagnosis-related groups (DRGs) for palliative care - a cross-sectional study in two German centres.

PubMed

Vogl, Matthias; Schildmann, Eva; Leidl, Reiner; Hodiamont, Farina; Kalies, Helen; Maier, Bernd Oliver; Schlemmer, Marcus; Roller, Susanne; Bausewein, Claudia

2018-04-05

Hospital costs and cost drivers in palliative care are poorly analysed. It remains unknown whether current German Diagnosis-Related Groups, mainly relying on main diagnosis or procedure, reproduce costs adequately. The aim of this study was therefore to analyse costs and reimbursement for inpatient palliative care and to identify relevant cost drivers. Two-center, standardised micro-costing approach with patient-level cost calculations and analysis of the reimbursement situation for patients receiving palliative care at two German hospitals (7/2012-12/2013). Data were analysed for the total group receiving hospital care covering, but not exclusively, palliative care (group A) and the subgroup receiving palliative care only (group B). Patient and care characteristics predictive of inpatient costs of palliative care were derived by generalised linear models and investigated by classification and regression tree analysis. Between 7/2012 and 12/2013, 2151 patients received care in the two hospitals including, but not exclusively, on the PCUs (group A). In 2013, 784 patients received care on the two PCUs only (group B). Mean total costs per case were € 7392 (SD 7897) (group A) and € 5763 (SD 3664) (group B), mean total reimbursement per case € 5155 (SD 6347) (group A) and € 4278 (SD 2194) (group B). For group A/B on the ward, 58%/67% of the overall costs and 48%/53%, 65%/82% and 64%/72% of costs for nursing, physicians and infrastructure were reimbursed, respectively. Main diagnosis did not significantly influence costs. However, duration of palliative care and total length of stay were (related to the cost calculation method) identified as significant cost drivers. Related to the cost calculation method, total length of stay and duration of palliative care were identified as significant cost drivers. In contrast, main diagnosis did not reflect costs. In addition, results show that reimbursement within the German Diagnosis-Related Groups system does not reproduce the costs adequately, but causes a financing gap for inpatient palliative care.

Models for structuring a clinical initiative to enhance palliative care in the intensive care unit: a report from the IPAL-ICU Project (Improving Palliative Care in the ICU).

PubMed

Nelson, Judith E; Bassett, Rick; Boss, Renee D; Brasel, Karen J; Campbell, Margaret L; Cortez, Therese B; Curtis, J Randall; Lustbader, Dana R; Mulkerin, Colleen; Puntillo, Kathleen A; Ray, Daniel E; Weissman, David E

2010-09-01

To describe models used in successful clinical initiatives to improve the quality of palliative care in critical care settings. We searched the MEDLINE database from inception to April 2010 for all English language articles using the terms "intensive care," "critical care," or "ICU" and "palliative care"; we also hand-searched reference lists and author files. Based on review and synthesis of these data and the experiences of our interdisciplinary expert Advisory Board, we prepared this consensus report. We critically reviewed the existing data with a focus on models that have been used to structure clinical initiatives to enhance palliative care for critically ill patients in intensive care units and their families. There are two main models for intensive care unit-palliative care integration: 1) the "consultative model," which focuses on increasing the involvement and effectiveness of palliative care consultants in the care of intensive care unit patients and their families, particularly those patients identified as at highest risk for poor outcomes; and 2) the "integrative model," which seeks to embed palliative care principles and interventions into daily practice by the intensive care unit team for all patients and families facing critical illness. These models are not mutually exclusive but rather represent the ends of a spectrum of approaches. Choosing an overall approach from among these models should be one of the earliest steps in planning an intensive care unit-palliative care initiative. This process entails a careful and realistic assessment of available resources, attitudes of key stakeholders, structural aspects of intensive care unit care, and patterns of local practice in the intensive care unit and hospital. A well-structured intensive care unit-palliative care initiative can provide important benefits for patients, families, and providers.

Ideology and Palliative Care: Moral Hazards at the Bedside.

PubMed

Rhodes, Rosamond; Strain, James J

2018-01-01

Palliative care has had a long-standing commitment to teaching medical students and other medical professionals about pain management, communication, supporting patients in their decisions, and providing compassionate end-of-life care. Palliative care programs also have a critical role in helping patients understand medical conditions, and in supporting them in dealing with pain, fear of dying, and the experiences of the terminal phase of their lives. We applaud their efforts to provide that critical training and fully support their continued important work in meeting the needs of patients and families. Although we appreciate the contributions of palliative care services, we have noted a problem involving some palliative care professionals' attitudes, methods of decisionmaking, and use of language. In this article we explain these problems by discussing two cases that we encountered.

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.

Treatment of palliative care emergencies by prehospital emergency physicians in Germany: an interview based investigation.

PubMed

Wiese, C H R; Bartels, U E; Ruppert, D; Marung, H; Luiz, T; Graf, B M; Hanekop, G G

2009-06-01

Palliative care medical emergencies as a consequence of advanced cancer account for approximately 3% of all prehospital emergency cases. Therefore, prehospital emergency physicians (EP) are confronted with 'end of life decisions'. No educational content exists concerning palliative medicine in emergency medicine curricula. Over the course of 6 months, we interviewed 150 EPs about their experiences in 'end of life decisions' using a specific questionnaire. The total response rate was 69% (n = 104). Most of the interviewed EPs (89%, n = 93) had been confronted with palliative care medical emergencies and expressed uncertainties in dealing with these difficult situations, especially in the area of psychosocial care of the patients (50%). The emergency treatment of palliative care patients can become a particular challenge for any EP. A large percentage of interviewed EPs felt uncertain about aspects of social care and in the assessment of decisions at the end of life. Further information and training are necessary to amenable EPs to provide adequate patient-oriented care to palliative care patients and their relatives in emergency situations.

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.

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.

Families' experiences with patients who died after assisted suicide: a retrospective interview study in southern Switzerland.

PubMed

Gamondi, C; Pott, M; Payne, S

2013-06-01

In Switzerland, if certain conditions are met, assisted suicide is not prosecuted. International debate suggests that requests for hasten death are often altered by the provision of palliative care. Aims of the study were to explore patients' reasons for choice of assisted suicide and family perceptions of the interactions with health care professionals. This is a qualitative study upon 11 relatives of 8 patients cared for by a palliative care team, deceased of assisted suicide. Pain and symptom burden were not regarded by patients as key reasons to seek assisted suicide: existential distress and fear of loss of control were the determinants. Most patients had made pre-illness decisions to use assisted suicide. A general need for perceived control and fear of dependency were reported as a common characteristic of these patients. Patients held misunderstandings about the nature and purpose of palliative care, and the interviewed indicated that patients did not regard provision of palliative care services as influential in preventing their decision. Assisted suicide was preferred despite provision of palliative care. Better understanding of the importance placed on perceived control and anticipated dependency is needed. Further research is needed to develop appropriate support for patients contemplating assisted suicide.

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

PubMed

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

2014-01-01

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

'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.

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.

Patient, nursing and medical staff experiences and perceptions of the care of people with palliative esophagogastric cancer: a systematic review of the qualitative evidence.

PubMed

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

2016-10-01

Esophagogastric cancer is the fifth most common malignancy and its incidence is increasing. The disease progresses quickly 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 on the most effective service models to support esophagogastric cancer patients. The overall objective of this systematic review was to synthesize the best available evidence on the experiences and perceptions of patients and health professionals with regard to the care of people diagnosed with palliative esophagogastric cancer. The review considered studies that included patients diagnosed with palliative esophagogastric cancer and any health professionals involved in the delivery of palliative care to this patient group in a hospital, home or community setting. The review considered studies that investigated the experiences and perceptions of people diagnosed with palliative esophagogastric cancer and staff working with these people. Studies that were carried out in any setting, including in-patient and outpatient areas, specialist cancer and non-specialist palliative care services and those were any patient were in receipt or had experiences of palliative care services were considered. All types of health practitioners delivering palliative care to esophagogastric cancer patients were considered. Studies that focused on qualitative data, including, but not limited to, designs such as phenomenology, grounded theory, ethnography, action research, feminist research and narrative approaches were considered. Mixed methods studies were considered in the review only if qualitative findings were reported separately. A three-step search strategy was utilized. A total 11 databases were searched for studies from 2000 onward, followed by hand searching of reference lists. Methodological quality was assessed using the Joanna Briggs Institute Qualitative Assessment and Review Instrument critical appraisal tool (JBI-QARI). Qualitative findings were extracted using the JBI-QARI data extraction Instrument. Qualitative research findings were pooled using a pragmatic meta-aggregative approach. The review included two publications. There were 46 findings which were aggregated into four categories and one overall synthesized finding: "In addition to support for physical needs, patients need support that takes into account changing life situations to achieve the best quality of life." The review shows that patients value services and support that addresses their complex, fluctuating and highly individual needs. No evidence was uncovered regarding how these services should be designed and delivered.

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.

Impact of a volunteer companion program on nursing students' knowledge and concerns related to palliative care.

PubMed

Kwekkeboom, Kristine L; Vahl, Cheryl; Eland, Joann

2006-02-01

Deficiencies in end-of-life education may explain nursing students' reports of feeling anxious and unqualified to care for dying patients. A volunteer Palliative Care Companion program was developed to provide undergraduate nursing students with an experiential learning opportunity by spending time with dying patients and their families. To evaluate the impact of the Palliative Care Companion program on nursing students' knowledge, attitudes, and concerns about providing palliative care, and to describe companion students' volunteer activities. Quasiexperimental controlled pretest-posttest design. Fifty-two undergraduate nursing students (32 companion students, 20 controls) at a midwestern U.S. university with an affiliated hospital-based palliative care service. All participants completed the Palliative Care Quiz for Nurses, Attitudes Toward Palliative Care, and Concern About Caring for Dying Patients questionnaires at the beginning and end of the semester. Companion subjects also kept a journal describing their palliative care experiences. Attitude scores were not analyzed because of poor internal consistency of the questionnaire. Changes in scores on knowledge items did not reach significance. Concern scores decreased significantly from pretest to posttest in the companion group. After adjusting for pretest concern score, there was a trend toward lower concern score in the companion group compared to controls (p=0.07). Companion students' journals described activities including visiting patients, viewing end-of-life videos, attending educational and public lectures, independent reading, and making bereavement phone calls to family members. The Palliative Care Companion program did not produce significant improvements in knowledge and concerns compared to controls, but companion students described their participation as a meaningful learning experience.

Palliative Care Specialist Consultation Is Associated With Supportive Care Quality in Advanced Cancer.

PubMed

Walling, Anne M; Tisnado, Diana; Ettner, Susan L; Asch, Steven M; Dy, Sydney M; Pantoja, Philip; Lee, Martin; Ahluwalia, Sangeeta C; Schreibeis-Baum, Hannah; Malin, Jennifer L; Lorenz, Karl A

2016-10-01

Although recent randomized controlled trials support early palliative care for patients with advanced cancer, the specific processes of care associated with these findings and whether these improvements can be replicated in the broader health care system are uncertain. The aim of this study was to evaluate the occurrence of palliative care consultation and its association with specific processes of supportive care in a national cohort of Veterans using the Cancer Quality ASSIST (Assessing Symptoms Side Effects and Indicators of Supportive Treatment) measures. We abstracted data from 719 patients' medical records diagnosed with advanced lung, colorectal, or pancreatic cancer in 2008 over a period of three years or until death who received care in the Veterans Affairs Health System to evaluate the association of palliative care specialty consultation with the quality of supportive care overall and by domain using a multivariate regression model. All but 54 of 719 patients died within three years and 293 received at least one palliative care consult. Patients evaluated by a palliative care specialist at diagnosis scored seven percentage points higher overall (P < 0.001) and 11 percentage points higher (P < 0.001) within the information and care planning domain compared with those without a consult. Early palliative care specialist consultation is associated with better quality of supportive care in three advanced cancers, predominantly driven by improvements in information and care planning. This study supports the effectiveness of early palliative care consultation in three common advanced cancers within the Veterans Affairs Health System and provides a greater understanding of what care processes palliative care teams influence. Published by Elsevier Inc.

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.

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

PubMed

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

2018-01-05

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

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

PubMed

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

2018-05-24

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

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.

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

PubMed

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

2012-04-20

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

Opinions of the Dutch public on palliative sedation: a mixed-methods approach.

PubMed

van der Kallen, Hilde T H; Raijmakers, Natasja J H; Rietjens, Judith A C; van der Male, Alex A; Bueving, Herman J; van Delden, Johannes J M; van der Heide, Agnes

2013-10-01

Palliative sedation is defined as deliberately lowering a patient's consciousness, to relieve intolerable suffering from refractory symptoms at the end of life. Palliative sedation is considered a last resort intervention in end-of-life care that should not be confused with euthanasia. To inform healthcare professionals about attitudes of the general public regarding palliative sedation. design and setting: A cross-sectional survey among members of the Dutch general public followed by qualitative interviews. One thousand nine hundred and sixty members of the general public completed the questionnaire, which included a vignette describing palliative sedation (response rate 78%); 16 participants were interviewed. In total, 22% of the responders indicated knowing the term 'palliative sedation'. Qualitative data showed a variety of interpretations of the term. Eighty-one per cent of the responders agreed with the provision of sedatives as described in a vignette of a patient with untreatable pain and a life expectancy of <1 week who received sedatives to alleviate his suffering. This percentage was somewhat lower for a patient with a life expectancy of <1 month (74%, P = 0.007) and comparable in the case where the physician gave sedatives with the aim of ending the patient's life (79%, P = 0.54). Most of the general public accept the use of palliative sedation at the end of life, regardless of a potential life-shortening effect. However, confusion exists about what palliative sedation represents. This should be taken into account by healthcare professionals when communicating with patients and their relatives on end-of-life care options.

The indirect costs of palliative care in end-stage cancer: A real-life longitudinal register- and questionnaire-based study.

PubMed

Haltia, Olli; Färkkilä, Niilo; Roine, Risto Paavo; Sintonen, Harri; Taari, Kimmo; Hänninen, Juha; Lehto, Juho Tuomas; Saarto, Tiina

2018-02-01

Palliative care needs are increasing as more people are dying from incurable diseases. Healthcare costs have been reported to be highest during the last year of life, but studies on the actual costs of palliative care are scarce. To explore the resource use and costs of palliative care among end-stage breast, colorectal and prostate cancer patients after termination of life-prolonging oncological treatments, that is, during the palliative care period. A real-life longitudinal register- and questionnaire-based study of cancer patients' resource use and costs. In total, 70 patients in palliative care with no ongoing oncological treatments were recruited from the Helsinki University Hospital or from the local hospice. Healthcare costs, productivity costs and informal care costs were included. The mean duration of the palliative care period was 179 days. The healthcare cost accounted for 55%, informal care for 27% and productivity costs for 18% of the total costs. The last 2 weeks of life contributed to 37% of the healthcare cost. The costs of the palliative care period were higher in patients living alone, which was mostly caused by inpatient care ( p = 0.018). The 45% share of indirect costs is substantial in end-of-life care. The healthcare costs increase towards death, which is especially true of patients living alone. This highlights the significant role of caregivers. More attention should be paid to home care and caregiver support to reduce inpatient care needs and control the costs of end-of-life care.

The Refusal of Palliative Radiation in Metastatic Non-Small Cell Lung Cancer and Its Prognostic Implications.

PubMed

Stavas, Mark J; Arneson, Kyle O; Ning, Matthew S; Attia, Albert A; Phillips, Sharon E; Perkins, Stephanie M; Shinohara, Eric T

2015-06-01

Patients with metastatic non-small cell lung cancer (NSCLC) have limited survival. Population studies have evaluated the impact of radiation refusal in the curative setting; however, no data exist concerning the prognostic impact of radiation refusal in the palliative care setting. To investigate the patterns of radiation refusal in newly diagnosed patients with metastatic NSCLC. Patients with Stage IV NSCLC diagnosed between 1988 and 2010 were identified in the Surveillance, Epidemiology, and End Results database. Univariate and multivariate analyses were used to identify predictors for refusal of radiation and the impact of radiation and refusal on survival in the palliative setting. A total of 285,641 patients were initially included in the analysis. Palliative radiation was recommended in 42% and refused by 3.1% of patients. Refusal rates remained consistent across included years of study. On multivariate analysis, older, nonblack/nonwhite, unmarried females were more likely to refuse radiation (P < 0.001 in all cases). Median survival for patients refusing radiation was three months vs. five months for those receiving radiation and two months for those whom radiation was not recommended. Patients with metastatic NSCLC who refuse recommended palliative radiation have a poor survival. Radiation refusal or the recommendation against treatment can serve as a trigger for integrating palliative care services sooner and contributes greatly to prognostic awareness. Further investigation into this survival difference and the factors behind refusal are warranted. Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

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

PubMed

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

2014-05-01

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

Should there be an expanded role for palliative care in end-stage renal disease?

PubMed

Kurella Tamura, Manjula; Cohen, Lewis M

2010-11-01

In this review, we outline the rationale for expanding the role of palliative care in end-stage renal disease (ESRD), describe the components of a palliative care model, and identify potential barriers in implementation. Patients receiving chronic dialysis have reduced life expectancy and high rates of chronic pain, depression, cognitive impairment, and physical disability. Delivery of prognostic information and advance care planning are desired by patients, but occur infrequently. Furthermore, although hospice care is associated with improved symptom control and lower healthcare costs at the end of life, it is underutilized by the ESRD population, even among patients who withdraw from dialysis. A palliative care model incorporating communication of prognosis, advance care planning, symptom assessment and management, and timely hospice referral may improve quality of life and quality of dying. Resources and clinical practice guidelines are available to assist practitioners with incorporating palliative care into ESRD management. There is a large unmet need to alleviate the physical, psychosocial, and existential suffering of patients with ESRD. More fully integrating palliative care into ESRD management by improving end-of-life care training, eliminating structural and financial barriers to hospice use, and identifying optimal methods to deliver palliative care are necessary if we are to successfully address the needs of an aging ESRD population.

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.

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

PubMed

Eagar, Kathy; Green, Janette; Gordon, Robert

2004-04-01

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

The role of palliative radiation therapy in symptomatic locally advanced gastric cancer

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

Tey, Jeremy; Back, Michael F.; Department of Radiation Oncology, Cancer Institute, Tan Tock Seng Hospital

2007-02-01

Purpose: To review the outcome of palliative radiotherapy (RT) alone in patients with symptomatic locally advanced or recurrent gastric cancer. Methods and Materials: Patients with symptomatic locally advanced or recurrent gastric cancer who were managed palliatively with RT at Cancer Institute, Singapore were retrospectively reviewed. Study end points included symptom response, median survival, and treatment toxicity (retrospectively scored using the Common Toxicity Criteria v3.0 [CTC]). Results: Between November 1999 and December 2004, 33 patients with locally advanced or recurrent gastric cancer were managed with palliative intent using RT alone. Median age was 76 years (range, 38-90 years). Twenty-one (64%) patientsmore » had known distant metastatic disease at time of treatment. Key index symptoms were bleeding (24 patients), obstruction (8 patients), and pain (8 patients). The majority of patients received 30 Gy/10 fractions (17 patients). Dose fractionation regimen ranged from an 8-Gy single fraction to 40 Gy in 16 fractions. Median survival was 145 days, actuarial 12-month survival 8%. A total of 54.3% of patients (13/24) with bleeding responded (median duration of response of 140 days), 25% of patients (2/8) with obstruction responded (median duration of response of 102 days), and 25% of patients (2/8) with pain responded (median duration of response of 105 days). No obvious dose-response was evident. One Grade 3 CTC equivalent toxicity was recorded. Conclusion: External beam RT alone is an effective and well tolerated modality in the local palliation of gastric cancer, with palliation lasting the majority of patients' lives.« less

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.

Integrated palliative care is about professional networking rather than standardisation of care: A qualitative study with healthcare professionals in 19 integrated palliative care initiatives in five European countries.

PubMed

den Herder-van der Eerden, Marlieke; van Wijngaarden, Jeroen; Payne, Sheila; Preston, Nancy; Linge-Dahl, Lisa; Radbruch, Lukas; Van Beek, Karen; Menten, Johan; Busa, Csilla; Csikos, Agnes; Vissers, Kris; van Gurp, Jelle; Hasselaar, Jeroen

2018-06-01

Integrated palliative care aims at improving coordination of palliative care services around patients' anticipated needs. However, international comparisons of how integrated palliative care is implemented across four key domains of integrated care (content of care, patient flow, information logistics and availability of (human) resources and material) are lacking. To examine how integrated palliative care takes shape in practice across abovementioned key domains within several integrated palliative care initiatives in Europe. Qualitative group interview design. A total of 19 group interviews were conducted (2 in Belgium, 4 in the Netherlands, 4 in the United Kingdom, 4 in Germany and 5 in Hungary) with 142 healthcare professionals from several integrated palliative care initiatives in five European countries. The majority were nurses ( n = 66; 46%) and physicians ( n = 50; 35%). The dominant strategy for fostering integrated palliative care is building core teams of palliative care specialists and extended professional networks based on personal relationships, shared norms, values and mutual trust, rather than developing standardised information exchange and referral pathways. Providing integrated palliative care with healthcare professionals in the wider professional community appears difficult, as a shared proactive multidisciplinary palliative care approach is lacking, and healthcare professionals often do not know palliative care professionals or services. Achieving better palliative care integration into regular healthcare and convincing the wider professional community is a difficult task that will take time and effort. Enhancing standardisation of palliative care into education, referral pathways and guidelines and standardised information exchange may be necessary. External authority (policy makers, insurance companies and professional bodies) may be needed to support integrated palliative care practices across settings.

The Sacred Heart Hospice: an Australian centre for palliative medicine.

PubMed

Stuart-Harris, R

1995-09-01

The Sacred Heart Hospice, Sydney, was founded in 1890 and is the largest inpatient palliative-care facility in Australia. Patients with advanced cancer form the predominant patient group, although patients with HIV/AIDS account for approximately 20% of admissions. A community-outreach service, established in 1983, cares for more patients at home than in the Hospice. Recently the Hospice has participated in a number of clinical trials and intends to become a regional centre for palliative-care research, education and training.

Impact of a Palliative Care Program on Tracheostomy Utilization in a Community Hospital.

PubMed

Pan, Cynthia X; Gutierrez, Cristina; Maw, Min M; Kansler, Amanda L; Gross, Liam; He, Jie; Kanta, Romana; Paul, Subroto

2015-12-01

Tracheostomies are typically provided to wean patients off the ventilator. However, in many circumstances tracheostomies are placed in patients who are at the end of their life with little hope of meaningful recovery. Palliative care teams decrease utilization of aggressive medical interventions in patients who are at the end of life. The study objective was to determine the impact of a palliative care team on tracheostomy utilization in a community hospital setting. The study was a four-year retrospective analysis of adult patients undergoing elective tracheostomy two years before and after the establishment of a palliative care program. The study in an ethnically diverse community hospital included patients older than 18 years old, with patients undergoing a tracheostomy due to trauma excluded. Before and after comparisons were made of demographics, in-hospital mortality, length of stay, and discharge status of patients undergoing tracheostomy. Seven hundred ninety patients undergoing tracheostomy were identified (n = 406, n = 384 before and after September 10, 2010, respectively). Patients were ethnically diverse (Caucasian 43%, Asian 23%, African American 11%, Hispanic 7%). The number of hospital admissions slightly increased during these two time periods (n = 58,926; n = 60,662, respectively). There were no statistical differences in age (73 versus 72, p = 0.827); gender (n = 218 [54%] versus n = 217 [57%] male, p = 0.426); or race (n = 187 [46%] versus n = 150 [39%] Caucasian, p = 0.073) in the two time periods. Patients who underwent tracheostomy after a palliative care service was established had less incidence of comorbid disease (Charlson Comorbidity Index score [CCIS]: 2 versus 3, p = 0.025); lower inpatient mortality (n = 107 [28%] versus n = 148 [37%], p = 0.009]); greater discharge to home or rehabilitation (n = 262 [68%] versus n = 249 [62%], p = 0.01); and lower rates of palliative weaning from mechanical ventilation (n = 61[16%] versus n = 113 [28%], p < 0.001). In an ethnically diverse community hospital, the institution of a palliative care program appears to have improved patient selection for tracheostomy with lower rates of inpatient mortality, improved rates of home discharge, and lower rates of palliative weaning from mechanical ventilation.

Reflections on palliative care from the jewish and islamic tradition.

PubMed

Schultz, Michael; Baddarni, Kassim; Bar-Sela, Gil

2012-01-01

Spiritual care is a vital part of holistic patient care. Awareness of common patient beliefs will facilitate discussions about spirituality. Such conversations are inherently good for the patient, deepen the caring staff-patient-family relationship, and enhance understanding of how beliefs influence care decisions. All healthcare providers are likely to encounter Muslim patients, yet many lack basic knowledge of the Muslim faith and of the applications of Islamic teachings to palliative care. Similarly, some of the concepts underlying positive Jewish approaches to palliative care are not well known. We outline Jewish and Islamic attitudes toward suffering, treatment, and the end of life. We discuss our religions' approaches to treatments deemed unnecessary by medical staff, and consider some of the cultural reasons that patients and family members might object to palliative care, concluding with specific suggestions for the medical team.

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.

Reflections on Palliative Care from the Jewish and Islamic Tradition

PubMed Central

Schultz, Michael; Baddarni, Kassim; Bar-Sela, Gil

2012-01-01

Spiritual care is a vital part of holistic patient care. Awareness of common patient beliefs will facilitate discussions about spirituality. Such conversations are inherently good for the patient, deepen the caring staff-patient-family relationship, and enhance understanding of how beliefs influence care decisions. All healthcare providers are likely to encounter Muslim patients, yet many lack basic knowledge of the Muslim faith and of the applications of Islamic teachings to palliative care. Similarly, some of the concepts underlying positive Jewish approaches to palliative care are not well known. We outline Jewish and Islamic attitudes toward suffering, treatment, and the end of life. We discuss our religions' approaches to treatments deemed unnecessary by medical staff, and consider some of the cultural reasons that patients and family members might object to palliative care, concluding with specific suggestions for the medical team. PMID:22203878

Constipation in specialized palliative care: factors related to constipation when applying different definitions.

PubMed

Erichsén, E; Milberg, A; Jaarsma, T; Friedrichsen, M

2016-02-01

For patients in palliative care, constipation is primarily a result of opioid treatment. Impacts from other factors related to constipation in palliative care are rarely studied. The aim was to identify factors related to constipation in patients in palliative care, and then to compare these factors between patients with different types of constipation and patients without constipation. Cross-sectional data on constipation was collected with a 26-item questionnaire from 485 patients in 38 specialist palliative care units in Sweden. Three different constipation groups were used; MC ONLY, PC ONLY, and MC & PC. Logistic regression analyses were used to calculate odds ratios. Patients with <3 defecations/week, MC ONLY, (n = 36) had higher odds of being hospitalized, bed-restricted, in need of personal assistance for toilet visits, and of having a poor fluid intake. Patients with the perception of being constipated, PC ONLY, (n = 93) had higher odds of having poor appetite, hemorrhoids, hard stool, more opioid treatment, less laxative treatment and of being more dissatisfied with constipation information. Patients with both <3 defecations/week and a perception of being constipated, MC & PC, (n = 78) had higher odds of having cancer- disease. There were several significant factors related to constipation with higher odds than opioid- treatment, for patients in palliative care, such as; hard stool, cancer diagnosis, dissatisfaction with information, low fluid intake, hemorrhoids, bed restriction, hospitalization, and need of personal assistance for toilet visits.

Experiences of time: a qualitative inquiry into experiences of time as described by palliative care inpatients.

PubMed

Robertson, Matra

2015-02-01

In palliative care, health professionals provide support and care for patients for the duration of the unknown time toward death. While the experiences of patients diagnosed with a life limiting illness in palliative care have received some scholarly attention, little research has explored these experiences as described by palliative inpatients themselves. The purpose of this article is to explore how patients describe their lived experiences of time while in a palliative inpatient facility. This study used a qualitative phenomenological method and nine inpatients were recruited. They were interviewed utilizing in-depth semi-structured interviews, which were audio taped and transcribed. These interview transcripts of their descriptions were the data sources for this inquiry. Their description is part of a broader phenomenological inquiry on the experience of living with a life limiting illness described by palliative inpatients. Data were analyzed to identify essential themes within and across cases. Three essential themes were revealed: "brief time"; "waiting time," and "transcendental horizon: future time." These themes were not mutually exclusive and participant's experiences of time approaching death were described as a time of living toward death. The findings suggest that patients diagnosed with a life limiting illness have multi-dimensional experiences of time. Understanding the experiences of temporality for patients close to the gravity of death, from the patients' own words, can provide direction for patient informed interventions in clinical practice.

[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.

Walking the line. Palliative sedation for existential distress: still a controversial issue?

PubMed

Schur, Sophie; Radbruch, Lukas; Masel, Eva K; Weixler, Dietmar; Watzke, Herbert H

2015-12-01

Adequate symptom relief is a central aspect of medical care of all patients especially in those with an incurable disease. However, as an illness progresses and the end of life approaches, physical or psychoexistential symptoms may remain uncontrollable requiring palliative sedation. Although palliative sedation has become an increasingly implemented practice in the care of terminally ill patients, sedation in the management of refractory psychological symptoms and existential distress is still a controversial issue and much debated. This case report presents a patient who received palliative sedation for the treatment of existential distress and discusses considerations that may arise from such a therapeutic approach.

Initiating pain and palliative care outpatient services for the suburban underserved in Montgomery County, Maryland: Lessons learned at the NIH Clinical Center and MobileMed.

PubMed

Aggarwal, Sunil K; Ghosh, Amrita; Cheng, M Jennifer; Luton, Kathleen; Lowet, Peter F; Berger, Ann

2016-08-01

With the ongoing expansion of palliative care services throughout the United States, meeting the needs of socioeconomically marginalized populations, as in all domains of healthcare, continues to be a challenge. Our specific aim here was to help meet some of these needs through expanding delivery of pain and palliative care services by establishing a new clinic for underserved patients and collecting descriptive data about its operation. In November of 2014, the National Institutes of Health Clinical Center's Pain and Palliative Care Service (PPCS) launched a bimonthly offsite pain and palliative care outpatient clinic in collaboration with Mobile Medical Care Inc. (MobileMed), a private not-for-profit primary care provider in Montgomery County, Maryland, serving underserved area residents since 1968. Staffed by NIH hospice and palliative medicine clinical fellows and faculty, the clinic provides specialty pain and palliative care consultation services to patients referred by their primary care healthcare providers. A patient log was maintained, charts reviewed, and referring providers surveyed on their satisfaction with the service. The clinic had 27 patient encounters with 10 patients (6 males, 4 females, aged 23-67) during its first 7 months of operation. The reason for referral for all but one patient was chronic pain of multiple etiologies. Patients had numerous psychosocial stressors and comorbidities. All primary care providers who returned surveys (n = 4) rated their level of satisfaction with the consultation service as "very satisfied" or "extremely satisfied." This brief descriptive report outlines the steps taken and logistical issues addressed to launch and continue the clinic, the characteristics of patients treated, and the results of quality-improvement projects. Lessons learned are highlighted and future directions suggested for the clinic and others that may come along like it.

Integrating Speech-Language Pathology Services in Palliative End-of-Life Care

ERIC Educational Resources Information Center

Pollens, Robin D.

2012-01-01

Clinical speech-language pathologists (SLPs) may receive referrals to consult with teams serving patients who have a severe and/or terminal disease. Palliative care focuses on the prevention or relief of suffering to maximize quality of life for these patients and their families. This article describes how the role of the SLP in palliative care…

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.

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.

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.

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/.

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.

Validation of the Polish version of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire - Core 15 - Palliative Care in patients with advanced cancer.

PubMed

Leppert, Wojciech; Majkowicz, Mikolaj

2013-05-01

Limited data exist on the validation of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire - Core 15 - Palliative Care in advanced cancer patients. To adapt the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire - Core 15 - Palliative Care to the Polish clinical setting and to evaluate its psychometric properties in advanced cancer patients. Two quality-of-life measurements were performed at baseline and after 7 days. The concurrent validity of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire - Core 15 - Palliative Care was established by the Pearson correlation coefficients with the modified Edmonton Symptom Assessment System, the Karnofsky Performance Status and the Brief Pain Inventory - Short Form. Reliability was assessed using Cronbach's alpha coefficients and the Spearman correlation coefficients of the baseline and of the second measurement of European Organization for Research and Treatment of Cancer Quality of Life Questionnaire - Core 15 - Palliative Care items. A total of 160 consecutive patients in one academic palliative medicine centre were included. A total of 129 patients completed the study. The concurrent validity revealed significant correlations of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire - Core 15 - Palliative Care pain scale with the Brief Pain Inventory - Short Form, the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire - Core 15 - Palliative Care symptom items with the modified Edmonton Symptom Assessment System and European Organization for Research and Treatment of Cancer Quality of Life Questionnaire - Core 15 - Palliative Care functional scales with the Karnofsky Performance Status scores. High Cronbach's alpha and standardised Cronbach's alpha values were found in the case of both functional (range: 0.830-0.925; 0.830-0.932) and symptom scales (range: 0.784-0.940; 0.794-0.941) of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire - Core 15 - Palliative Care, respectively. The Spearman correlation coefficients between the first and the second measurements were significant (p < 0.0001) for all European Organization for Research and Treatment of Cancer Quality of Life Questionnaire - Core 15 - Palliative Care items. Polish version of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire - Core 15 - Palliative Care is a valid and reliable tool recommended for quality-of-life assessment and monitoring in advanced cancer patients.

Palliative and end-of-life care in stroke: a statement for healthcare professionals from the American Heart Association/American Stroke Association.

PubMed

Holloway, Robert G; Arnold, Robert M; Creutzfeldt, Claire J; Lewis, Eldrin F; Lutz, Barbara J; McCann, Robert M; Rabinstein, Alejandro A; Saposnik, Gustavo; Sheth, Kevin N; Zahuranec, Darin B; Zipfel, Gregory J; Zorowitz, Richard D

2014-06-01

The purpose of this statement is to delineate basic expectations regarding primary palliative care competencies and skills to be considered, learned, and practiced by providers and healthcare services across hospitals and community settings when caring for patients and families with stroke. Members of the writing group were appointed by the American Heart Association Stroke Council's Scientific Statement Oversight Committee and the American Heart Association's Manuscript Oversight Committee. Members were chosen to reflect the diversity and expertise of professional roles in delivering optimal palliative care. Writing group members were assigned topics relevant to their areas of expertise, reviewed the appropriate literature, and drafted manuscript content and recommendations in accordance with the American Heart Association's framework for defining classes and level of evidence and recommendations. The palliative care needs of patients with serious or life-threatening stroke and their families are enormous: complex decision making, aligning treatment with goals, and symptom control. Primary palliative care should be available to all patients with serious or life-threatening stroke and their families throughout the entire course of illness. To optimally deliver primary palliative care, stroke systems of care and provider teams should (1) promote and practice patient- and family-centered care; (2) effectively estimate prognosis; (3) develop appropriate goals of care; (4) be familiar with the evidence for common stroke decisions with end-of-life implications; (5) assess and effectively manage emerging stroke symptoms; (6) possess experience with palliative treatments at the end of life; (7) assist with care coordination, including referral to a palliative care specialist or hospice if necessary; (8) provide the patient and family the opportunity for personal growth and make bereavement resources available if death is anticipated; and (9) actively participate in continuous quality improvement and research. Addressing the palliative care needs of patients and families throughout the course of illness can complement existing practices and improve the quality of life of stroke patients, their families, and their care providers. There is an urgent need for further research in this area. © 2014 American Heart Association, Inc.

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.

[Specialised palliative home care (SAPV) in an urban setting--a first year experience].

PubMed

Vyhnalek, B; Heilmeier, B; Borasio, G D

2011-07-21

The Palliative Home Care Team of the InterdisciplinaryCenterfor Palliative Medicine at Munich University Hospital has been providing Specialized Home Palliative Care (German abbreviation: SAPV) according to the new German regulations since October 2009. Out of 267 requests, 178 patients were accepted for SAPV, 33 thereof at the level of care coordination and 140 as partial or total home palliative care including 24-h, 7/7 on-call duty. Of the latter group, 90 died at home, 19 in a palliative care unit or hospice and one on a hospital ward.The place of death corresponded to the patients' wishes in 98% of cases. Altogether, emergency medical services other than the SAPV team were called upon in 7 cases, and 12 patients were admitted to a general hospital ward. More than a quarter of our patients had non-oncological diagnoses.The proportion of work dealing with family members (21%) was higher than the patient-related one (19%). The highest percentage (37%) represented office work. The requirement for SAPV in the urban setting is high, in spite of the intensive primary care, with an increasing proportion of non-oncological patients. A key aspect concerns the work with family members. SAPV can minimize the number of hospital admissions and emergency calls. The patient's wishes concerning the place of death can be fulfilled. Feed-back from patients and family members indicates that SAPV makes an important contribution towards removing the taboo associated with death and dying.

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.

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 costs borne by different stakeholders. © 2014 John Wiley & Sons Ltd.

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.

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.

Palliative sedation and moral distress: A qualitative study of nurses.

PubMed

Lokker, M E; Swart, S J; Rietjens, J A C; van Zuylen, L; Perez, R S G M; van der Heide, A

2018-04-01

Clinical nursing practice may involve moral distress, which has been reported to occur frequently when nurses care for dying patients. Palliative sedation is a practice that is used to alleviate unbearable and refractory suffering in the last phase of life and has been linked to distress in nurses. The aim of this study was to explore nurses' reports on the practice of palliative sedation focusing on their experiences with pressure, dilemmas and morally distressing situations. In-depth interviews with 36 nurses working in hospital, nursing home or primary care. Several nurses described situations in which they felt that administration of palliative sedation was in the patient's best interest, but where they were constrained from taking action. Nurses also reported on situations where they experienced pressure to be actively involved in the provision of palliative sedation, while they felt this was not in the patient's best interest. The latter situation related to (1) starting palliative sedation when the nurse felt not all options to relieve suffering had been explored yet; (2) family requesting an increase of the sedation level where the nurse felt that this may involve unjustified hastening of death; (3) a decision by the physician to start palliative sedation where the patient had previously expressed an explicit wish for euthanasia. Nurses experienced moral distress in situations where they were not able to act in what they believed is the patient's best interest. Situations involving moral distress require nurses to be well informed and able to adequately communicate with suffering patients, distressed family and physicians. Copyright © 2018 Elsevier Inc. All rights reserved.

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.

District nurses' conceptions of medical technology in palliative homecare.

PubMed

Munck, Berit; Fridlund, Bengt; Mårtensson, Jan

2011-10-01

The aim of this study was to describe district nurses' conceptions of medical technology in palliative homecare. Medical technology has, in recent years, been widely used in palliative homecare. Personnel with varying degrees of training and knowledge must be able to handle the new technology. A descriptive design with a phenomenographic approach was chosen to describe qualitatively different conceptions of the phenomenon medical technology. Interviews with 16 district nurses working with palliative homecare were analysed and five descriptive categories emerged. Medical technology in palliative homecare led to vulnerability because of increasing demands and changing tasks. When medical technology was used in the home it demanded collaboration between all involved actors. It also demanded self-reliance and an awareness of managing medical technology in a patient-safe way. Medical technology provided freedom for the palliative patients. To maintain patient safety, more education and collaboration with palliative care teams is needed. Next-of-kin are considered as an important resource but their participation must be based on their own conditions. District nurses need regular training on medical devices, must be more specialized in this kind of care and must not fragment their working time within other specialities. © 2011 Blackwell Publishing Ltd.

Exploring the leadership role of the clinical nurse specialist on an inpatient palliative care consulting team.

PubMed

Stilos, Kalli; Daines, Pat

2013-03-01

Demand for palliative care services in Canada will increase owing to an aging population and the evolving role of palliative care in non-malignant illness. Increasing healthcare demands continue to shape the clinical nurse specialist (CNS) role, especially in the area of palliative care. Clinical nurse specialists bring specialized knowledge, skills and leadership to the clinical setting to enhance patient and family care. This paper highlights the clinical leadership role of the CNS as triage leader for a hospital-based palliative care consulting team. Changes to the team's referral and triage processes are emphasized as key improvements to team efficiency and timely access to care for patients and families.

Timing of palliative care needs reporting and aggressiveness of care near the end of life in metastatic lung cancer: A national registry-based study.

PubMed

Goldwasser, François; Vinant, Pascale; Aubry, Régis; Rochigneux, Philippe; Beaussant, Yvan; Huillard, Olivier; Morin, Lucas

2018-05-09

Early integration of palliative care for patients with metastatic lung cancer improves their quality of life and survival and reduces the aggressiveness of care near the end of life. This study examined the association between the timing of palliative care needs reporting and the aggressiveness of end-of-life care. This retrospective cohort study used the French National Hospital Registry to identify all hospitalized adults (≥20 years old) who died of metastatic lung cancer in France between 2010 and 2013. It compared the use of care and treatments near the end of life as a function of the timing of the first reporting of palliative care needs. The use of chemotherapy and the use of invasive ventilation were defined as primary outcomes. Propensity score weighting was used to control for potential confounders. Among a total of 64,950 deceased patients with metastatic lung cancer, the reporting of palliative care needs was characterized as timely (from 91 to 31 days before death) for 26.3%, late (from 30 to 8 days before death) for 31.5%, and very late (from 7 to 0 days before death) for 12.8%. Palliative care needs were not reported for 19,106 patients (29.4%). Patients with timely reporting of palliative care needs had the earliest and most progressive decrease in the use of anticancer therapy. The use of invasive ventilation also increased with a delay in palliative care needs reporting. There is a clear association between the timing of palliative care needs reporting and the aggressiveness of care near the end of life. Cancer 2018. © 2018 American Cancer Society. © 2018 American Cancer Society.

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

PubMed

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

2013-12-01

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

Coordination of palliative cancer care in the community: "unfinished business".

PubMed

Brazil, Kevin; Bainbridge, Daryl; Sussman, Jonathan; Whelan, Tim; O'Brien, Mary Ann; Pyette, Nancy

2009-07-01

This study assessed the degree to which services in south-central Ontario, Canada, were coordinated to meet the supportive care needs of palliative cancer patients and their families. Programs within the region that were identified as providing supportive care to palliative cancer patients and their families were eligible to participate in the study. Program administrators participated in a semi-structured interview and direct-care providers completed a survey instrument. Administrators from 37 (97%) of 38 eligible programs and 109 direct-care providers representing 26 (70%) programs participated in the study. Most administrator and direct-care respondents felt that existing services in the community were responsive to palliative care patients' individual needs. However, at a system level, most respondents in both groups felt that required services were not available and that resources were inadequate. The most frequently reported unmet supportive care need identified by both respondent groups was psychological/social support. Most administrator (69%) and direct-care (64%) respondents felt that palliative care services were not available when needed. The majority of administrator and direct-care respondents were satisfied with the exchange of patient information within and between programs, although direct-care staff identified a deficit in information transferred on palliative care patients' social/psychological status. The study demonstrated the value of a theory-based approach to evaluate the coordination of palliative cancer care services. The findings revealed that service programs faced significant challenges in their efforts to provide coordinated care.

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.

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.

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

PubMed Central

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

2015-01-01

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

The proportionate value of proportionality in palliative sedation.

PubMed

Berger, Jeffrey T

2014-01-01

Proportionality, as it pertains to palliative sedation, is the notion that sedation should be induced at the lowest degree effective for symptom control, so that the patient's consciousness may be preserved. The pursuit of proportionality in palliative sedation is a widely accepted imperative advocated in position statements and guidelines on this treatment. The priority assigned to the pursuit of proportionality, and the extent to which it is relevant for patients who qualify for palliative sedation, have been overstated. Copyright 2014 The Journal of Clinical Ethics. All rights reserved.

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.

Review of palliative sedation and its distinction from euthanasia and lethal injection.

PubMed

Hahn, Michael P

2012-01-01

Palliative sedation evolved from within the practice of palliative medicine and has become adopted by other areas of medicine, such as within intensive care practice. Clinician's usually come across this practice for dying patients who are foregoing or having life support terminated. A number of intolerable and intractable symptom burdens can occur during the end of life period that may require the use of palliative sedation. Furthermore, when patients receive palliative sedation, the continued use of hydration and nutrition becomes an issue of consideration and there are contentious bioethical issues involved in using or withholding these life-sustaining provisions. A general understanding of biomedical ethics helps prevent abuse in the practice of palliative sedation. Various sedative drugs can be employed in the provision of palliative sedation that can produce any desired effect, from light sedation to complete unconsciousness. Although there are some similarities in the pharmacotherapy of palliative sedation, euthanasia, physician-assisted suicide, and lethal injection, there is a difference in how the drugs are administered with each practice. There are some published guidelines about how palliative sedation should be practiced, but currently there is not any universally accepted standard of practice.

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

PubMed

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

2014-09-01

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

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.

Rural Palliative Care in North India: Rapid Evaluation of a Program Using a Realist Mixed Method Approach.

PubMed

Munday, Daniel F; Haraldsdottir, Erna; Manak, Manju; Thyle, Ann; Ratcliff, Cathy M

2018-01-01

Palliative care has not developed widely in rural North India. Since 2010, the Emmanuel Hospitals Association (EHA) has been developing a model of palliative care appropriate for this setting, based on teams undertaking home visits with the backup of outpatient and inpatient services. A project to further develop the model operated from 2012 to 2015 supported by funding from the UK. This study aims to evaluate the EHA palliative care project. Rapid evaluation method using a mixed method realist approach at the five project hospital sites. An overview of the project was obtained by analyzing project documents and key informant interviews. Questionnaire data from each hospital were collected, followed by interviews with staff, patients, and relatives and observations of home visits and other activities at each site. Descriptive analysis of quantitative and thematic analysis of qualitative data was undertaken. Each site was measured against the Indian Minimum Standards Tool for Palliative Care (IMSTPC). Each team followed the EHA model, with local modifications. Services were nurse led with medical support. Eighty percent of patients had cancer. Staff demonstrated good palliative care skills and patients and families appreciated the care. Most essential IMSTPC markers were achieved but morphine licenses were available to only two teams. Remarkable synergy was emerging between palliative care and community health. Hospitals planned to fund palliative care through income from surgical services. Excellent palliative care appropriate for rural north India is delivered through the EHA model. It could be extended to other similar sites.

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.

Physiotherapy in the care of the dying.

PubMed

Davies, B

1980-01-01

This paper examines the role of the physiotherapist in the care of patients whose conditions have reached the point at which intensive active treatment is no longer appropriate and is, therefore, replaced by palliative care directed toward the comfort and support of the patients and their families. The principles of physiotherapy in the delivery of palliative care (modified treatment aims, team approach, and acceptance of death), the possible contexts--both physical and psychological--of effective palliative care, and the attitudinal characteristics of physiotherapists best suited to the implementation of effective palliative care are discussed. The results of a survey of Canadian undergraduate training in physiotherapeutic palliative care, and the present level and method of instruction in this area, are included. The article demonstrates how the physiotherapist can play a central role in the multidisciplinary approach to terminal patient care by assisting patients to make the most of their decreasing potentials, by encouraging them to set short-term goals, and by relieving them of their discomfort.

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.

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.

[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.

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

PubMed

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

2012-04-01

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

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.

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 team visits. Qualitative study through participant observation.

PubMed

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

2016-03-30

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

Clinical staff perceptions of palliative care-related quality of care, service access, education and training needs and delivery confidence in an acute hospital setting.

PubMed

Frey, Rosemary; Gott, Merryn; Raphael, Deborah; O'Callaghan, Anne; Robinson, Jackie; Boyd, Michal; Laking, George; Manson, Leigh; Snow, Barry

2014-12-01

Central to appropriate palliative care management in hospital settings is ensuring an adequately trained workforce. In order to achieve optimum palliative care delivery, it is first necessary to create a baseline understanding of the level of palliative care education and support needs among all clinical staff (not just palliative care specialists) within the acute hospital setting. The objectives of the study were to explore clinical staff: perceptions concerning the quality of palliative care delivery and support service accessibility, previous experience and education in palliative care delivery, perceptions of their own need for formal palliative care education, confidence in palliative care delivery and the impact of formal palliative care training on perceived confidence. A purposive sample of clinical staff members (598) in a 710-bed hospital were surveyed regarding their experiences of palliative care delivery and their education needs. On average, the clinical staff rated the quality of care provided to people who die in the hospital as 'good' (x̄=4.17, SD=0.91). Respondents also reported that 19.3% of their time was spent caring for end-of-life patients. However, only 19% of the 598 respondents reported having received formal palliative care training. In contrast, 73.7% answered that they would like formal training. Perceived confidence in palliative care delivery was significantly greater for those clinical staff with formal palliative care training. Formal training in palliative care increases clinical staff perceptions of confidence, which evidence suggests impacts on the quality of palliative care provided to patients. The results of the study should be used to shape the design and delivery of palliative care education programmes within the acute hospital setting to successfully meet the needs of all clinical staff. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

The importance of measuring customer satisfaction in palliative care.

PubMed

Turriziani, Adriana; Attanasio, Gennaro; Scarcella, Francesco; Sangalli, Luisa; Scopa, Anna; Genualdo, Alessandra; Quici, Stefano; Nazzicone, Giulia; Ricciotti, Maria Adelaide; La Commare, Francesco

2016-03-01

In the last decades, palliative care has been more and more focused on the evaluation of patients' and families' satisfaction with care. However, the evaluation of customer satisfaction in palliative care presents a number of issues such as the presence of both patients and their families, the frail condition of the patients and the complexity of their needs, and the lack of standard quality indicators and appropriate measurement tools. In this manuscript, we critically review existing evidence and literature on the evaluation of satisfaction in the palliative care context. Moreover, we provide - as a practical example - the preliminary results of our experience in this setting with the development of a dedicated tool for the measurement of satisfaction.

Current status of palliative care services in Indonesia: a literature review.

PubMed

Rochmawati, Erna; Wiechula, Rick; Cameron, Kate

2016-06-01

To review healthcare literature in relation to the provision of palliative care in Indonesia and to identify factors that may impact on palliative care development. People living with life-limiting illness benefit from access to palliative care services to optimize quality of life. Palliative care services are being expanded in developing countries but in Indonesia such services are in their infancy with many patients with life-limiting illnesses having access to appropriate health care compromised. Relevant healthcare databases including CINAHL, PubMed, Science Direct and Scopus were searched using the combinations of search terms: palliative care, terminal care, end-of-life care, Indonesia and nursing. A search of grey literature including Internet sites was also carried out. Nine articles were included in the review. Facilitating factors supporting the provision of palliative care included: a culture of strong familial support, government policy support, volunteering and support from regional organizations. Identified barriers to palliative care provision were a limited understanding of palliative care among healthcare professionals, the challenging geography of Indonesia and limited access to opioid medications. There are facilitators and barriers that currently impact on the development of palliative care in Indonesia. Strategies that can be implemented to improve palliative care include training of nurses and doctors in the primary care sector, integrating palliative care in undergraduate medical and nursing curriculum and educating family and community about basic care. Nurses and doctors who work in primary care can potentially play a role in supporting and educating family members providing direct care to patients with palliative needs. © 2016 International Council of Nurses.

Inpatient Palliative Care Consultation and 30-Day Readmissions in Oncology.

PubMed

DiMartino, Lisa D; Weiner, Bryan J; Hanson, Laura C; Weinberger, Morris; Birken, Sarah A; Reeder-Hayes, Katherine; Trogdon, Justin G

2018-01-01

Prior research indicates that hospice and palliative care delivered in outpatient settings are associated with reduced hospital readmissions for cancer patients. However, little is known about how inpatient palliative care affects readmissions in oncology. To examine associations among inpatient palliative care consultation, hospice use (discharge), and 30-day readmissions among patients with solid tumor cancers. We identified all live discharges from a large tertiary cancer hospital between 2010 and 2016. Palliative care consult data were abstracted from medical charts and linked to hospital encounter data. Propensity scores were used to match palliative care consult to usual care encounters. Modified Poisson regression models estimated adjusted relative risk (aRR) and 95% confidence intervals (CI) of 30-day readmissions and hospice discharge. We compared predicted probabilities of readmission for palliative care consultation with hospice discharge, without hospice discharge, and usual care. Of 8085 eligible encounters, 753 involved a palliative care consult. The likelihood of having a 30-day readmission did not differ between palliative care consult and usual care groups (p > 0.05). However, the palliative care consult group was more likely than usual care to have a hospice discharge (aRR = 4.09, 95% CI: 3.07-5.44). The predicted probability of 30-day readmission was lower when palliative care consultation was combined with hospice discharge compared to usual care or consultation with discharge to nonhospice postacute care (p < 0.001). The effect of inpatient palliative care on readmissions in oncology is largely driven by hospice enrollment. Strategies that combine palliative care consultation with hospice discharge may decrease hospital readmissions and improve cancer care quality.

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

PubMed Central

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

2006-01-01

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

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

PubMed

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

2015-01-01

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

Palliative Care in Heart Failure: Rationale, Evidence, and Future Priorities.

PubMed

Kavalieratos, Dio; Gelfman, Laura P; Tycon, Laura E; Riegel, Barbara; Bekelman, David B; Ikejiani, Dara Z; Goldstein, Nathan; Kimmel, Stephen E; Bakitas, Marie A; Arnold, Robert M

2017-10-10

Patients with heart failure (HF) and their families experience stress and suffering from a variety of sources over the course of the HF experience. Palliative care is an interdisciplinary service and an overall approach to care that improves quality of life and alleviates suffering for those living with serious illness, regardless of prognosis. In this review, we synthesize the evidence from randomized clinical trials of palliative care interventions in HF. While the evidence base for palliative care in HF is promising, it is still in its infancy and requires additional high-quality, methodologically sound studies to clearly elucidate the role of palliative care for patients and families living with the burdens of HF. Yet, an increase in attention to primary palliative care (e.g., basic physical and emotional symptom management, advance care planning), provided by primary care and cardiology clinicians, may be a vehicle to address unmet palliative needs earlier and throughout the illness course. Published by Elsevier Inc.

The business of palliative medicine--Part 3: The development of a palliative medicine program in an academic medical center.

PubMed

Nelson, Kristine A; Walsh, Declan

2003-01-01

Palliative medicine is the total continuing care of patients with cancer. Most resources for cancer care focus on curative attempts while often ignoring the symptoms created by the disease and its treatment. Attempts at curative treatment of the malignancy must be coupled with pain and symptom relief psychosocial and spiritual care, and support for the patient and family extending from the time of diagnosis through the bereavement period. To accomplish this important goal, we must establish comprehensive palliative medicine programs in cancer centers throughout the world. These programs must include education, research, and patient care and must work through an interdisciplinary team. The Cleveland Clinic Foundation palliative medicine program (PMP) is composed of a primary inpatient service, consult service, outpatient clinic, hospice homecare, and cancer homecare services. In this article, we describe the structure and development of the program and suggest future avenues for growth.

Data collection as the first step in program development: the experience of a chronic care palliative unit.

PubMed

Munn, B; Worobec, F

1997-01-01

This retrospective descriptive study of 73 patients who died in St. Peter's Hospital examines and contrasts the patients profile and referral sources of a palliative care unit in a chronic care hospital over two six-month periods during 1994 and 1995. Shortened length of stay (83.8 and 43.2 days respectively), documentation issues, CPR practices (CPR was desired by seven patients up to the time of death), and lack of referrals from long-term care facilities have led St. Peter's Hospital to ask further questions of its palliative care program, e.g. given the lack of referrals from long-term care facilities, how is palliative care being managed in this sector? In Ontario, palliative care has been placed under the domain of chronic care and program development depends in part on the knowledge of the population it serves. This study is a first step.

Integrated oncology and palliative care: five years experience at the National Cancer Institute of Mexico.

PubMed

Allende-Pérez, Silvia; Verástegui-Avilés, Emma; Mohar-Betancourt, Alejandro; Meneses-García, Abelardo; Herrera-Gómez, Angel

2016-04-01

Under the national plan for addressing cancer, prevention and detection play important roles. However, the cost of treatments and late diagnosis represent a significant burden on health services. At the National Cancer Institute, more than half of patients present with tumors in advanced stages, and approximately 10% of patients seen for the first time exhibit terminal-stage malignancies, where there are no feasible cancer treatment options, and the patients are instead admitted to the hospital exclusively for palliative symptomatic management. In 2010, the National Cancer Plan began implementing a model of integrative management of palliative care in oncology that has gradually come to include symptomatic palliative care, involving ambulatory, distant and hospitalized management of patients with cancer, in its final stages and, more recently, in earlier stages.

New frontiers in the future of palliative care: real-world bioethical dilemmas and axiology of clinical practice.

PubMed

Guevara-López, Uría; Altamirano-Bustamante, Myriam M; Viesca-Treviño, Carlos

2015-02-26

In our time there is growing interest in developing a systematic approach to oncologic patients and end-of-life care. An important goal within this domain is to identify the values and ethical norms that guide physicians' decisions and their recourse to technological aids to preserve life. Though crucial, this objective is not easy to achieve. The purpose of this study is to evaluate empirically the real-life bioethical dilemmas with which palliative physicians are confronted when treating terminal cancer patients. A quasi-experimental, observational, comparative, prospective and mixed (qualitative and quantitative) study was conducted in order to analyse the correlation between the palliative doctor-patient relationship and ethical judgments regarding everyday bioethical dilemmas that arise in palliative clinical practice. The values at stake in decision-making on a daily basis were also explored. From February 2012 to march 2014, palliative healthcare personnel were invited to participate in a research project on axiology of clinical practice in palliative medicine. Each participant answered to a set of survey instruments focusing on ethical dilemmas, views, and representations of clinical practice. For this analysis we selected a convenience sample of 30 physicians specialized in pain medicine and palliative care (algologists and palliativists), with two or more years of experience with oncologic patients and end-of-life care. 113 dilemmas were obtained, the most frequent of which were those regarding sedation, home administration of opioids, and institutional regulations. We observed that the ethical nucleus of palliative medicine is truth-telling, implying bidirectional trust between patients and healthcare providers. The two most prominent virtues among the participants in our study were justice and professional humility. The outstanding roles of the physician in palliative medicine are as educator and as adviser, followed by that of provider of medical assistance. This investigation opens up new horizons in a career path where professional wearing is rampant. The rediscovery of values and virtues in palliative clinical practice will renew and replenish the motivation of healthcare providers who carry out these duties, giving them a new professional and personal perspective of growth.

"They Shouldn't Be Coming to the ED, Should They?": A Descriptive Service Evaluation of Why Patients With Palliative Care Needs Present to the Emergency Department.

PubMed

Green, Emilie; Ward, Sarah; Brierley, Will; Riley, Ben; Sattar, Henna; Harris, Tim

2017-12-01

Patients with palliative care needs frequently attend the emergency department (ED). There is no international agreement on which patients are best cared for in the ED, compared to the primary care setting or direct admission to the hospital. This article presents the quantitative phase of a mixed-methods service evaluation, exploring the reasons why patients with palliative care needs present to the ED. This is a single-center, observational study including all patients under the care of a specialist palliative care team who presented to the ED over a 10-week period. Demographic and clinical data were collected from electronic health records. A total of 105 patients made 112 presentations to the ED. The 2 most common presenting complaints were shortness of breath (35%) and pain (28%). Eighty-three percent of presentations required care in the ED according to a priori defined criteria. They either underwent urgent investigation or received immediate interventions that could not be delivered in another setting, were referred by a health-care professional, or were admitted. Findings challenge the misconception that patients known to a palliative care team should be cared for outside the ED. The importance and necessity of the ED for patients in their last years of life has been highlighted, specifically in terms of managing acute, unpredictable crises. Future service provision should not be based solely on a patient's presenting complaint. Further qualitative research exploring patient perspective is required in order to explore the decision-making process that leads patients with palliative care needs to the ED.

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

PubMed

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

2016-08-01

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

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.

Does the use of specialist palliative care services modify the effect of socioeconomic status on place of death? A systematic review.

PubMed

Chen, Hong; Nicolson, Donald J; Macleod, Una; Allgar, Victoria; Dalgliesh, Christopher; Johnson, Miriam

2016-05-01

Cancer patients in lower socioeconomic groups are significantly less likely to die at home and experience more barriers to access to palliative care. It is unclear whether receiving palliative care may mediate the effect of socioeconomic status on place of death. This review examines whether and how use of specialist palliative care may modify the effect of socioeconomic status on place of death. A systematic review was conducted. Eligible papers were selected and the quality appraised by two independent reviewers. Data were synthesised using a narrative approach. MEDLINE, Embase, CINAHL, PsycINFO and Web of Knowledge were searched (1997-2013). Bibliographies were scanned and experts contacted. Papers were included if they reported the effect of both socioeconomic status and use of specialist palliative care on place of death for adult cancer patients. Nine studies were included. All study subjects had received specialist palliative care. With regard to place of death, socioeconomic status was found to have (1) no effect in seven studies and (2) an effect in one study. Furthermore, one study found that the effect of socioeconomic status on place of death was only significant when patients received standard specialist palliative care. When patients received more intense care adapted to their needs, the effect of socioeconomic status on place of death was no longer seen. There is some evidence to suggest that use of specialist palliative care may modify the effect of socioeconomic status on place of death. © The Author(s) 2015.

The perceived impact of public involvement in palliative care in a provincial palliative care network in the Netherlands: a qualitative study.

PubMed

Haarsma, Frederike; Moser, Albine; Beckers, Manon; van Rijswijk, Henk; Stoffers, Esther; Beurskens, Anna

2015-12-01

Public involvement in palliative care is challenging and difficult, because people in need of palliative care are often not capable of speaking up for themselves. Patient representatives advocate for their common interests. The aim of our study was to examine in depth the current practice of public involvement in palliative care. The study was conducted in the province of Limburg in the Netherlands, with six palliative care networks. Study participants were 16 patient representatives and 12 professionals. This study had a descriptive design using qualitative methods: 18 in-depth interviews and three focus groups were conducted. The critical incident technique was used. The data were analysed using an analytical framework based on Arnstein's involvement classification and the process of decision making. Impact categories as well as facilitators and barriers were analysed using content analysis. The perceived impact of public involvement in palliative care in terms of citizen control and partnership is greatest with regard to quality of care, information development and dissemination, and in terms of policymaking with regard to the preparation and implementation phases of decision making. The main difference in perceived impact between patient representatives and professionals relates to the tension between operational and strategic involvement. Patient representatives experienced more impact regarding short-term solutions to practical problems, while professionals perceived great benefits in long-term, strategic processes. Improving public involvement in palliative care requires positive attitudes, open communication, sufficient resources and long-term support, to build a solid basis for pursuing meaningful involvement in the entire decision-making process. © 2014 John Wiley & Sons Ltd.

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

PubMed

Dhiliwal, Sunil R; Muckaden, Maryann

2015-01-01

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

Pain and symptom control. Patient rights and physician responsibilities.

PubMed

Emanuel, E J

1996-02-01

In considering the care of patients with incurable and terminal diseases, there are three types of interventions: (1) palliative care and symptom management; (2) experimental therapies; and (3) active life-ending interventions. Relief of pain, other symptoms, and suffering should be the basic and standard treatment; the other interventions are meant to supplement, not replace, this intervention. This means the physician's primary obligation is to inform patients about the options for palliative care and to provide quality palliative care. Thus, physicians who care for terminally ill patients have an obligation to keep their knowledge base and skills in palliative care current. In those circumstances in which a patient's needs exceeds the physician's knowledge and skills, physicians have a responsibility to refer the patient to a palliative care specialist. With regard to experimental therapies, physicians must obtain full informed consent, provide especially accurate data on the risks and benefits of experimental therapies, and ensure that the patient understands the aims of the proposed therapy. Regarding active life-ending therapies, physicians have the obligation to withhold or withdraw life-sustaining treatment if the patient so desires and to provide adequate pain medication even if this hastens death. Even if euthanasia or physician-assisted suicide are legalized, there is unlikely to be an obligation to provide this intervention.

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

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

PubMed

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

2005-10-01

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

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

PubMed

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

2014-02-01

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

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

PubMed

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

2018-01-29

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

What are families most grateful for after receiving palliative care? Content analysis of written documents received: a chance to improve the quality of care.

PubMed

Aparicio, María; Centeno, Carlos; Carrasco, José Miguel; Barbosa, Antonio; Arantzamendi, María

2017-09-06

Family members are involved in the care of palliative patients at home and therefore, should be viewed as important sources of information to help clinicians better understand the quality palliative care service patients receive. The objective of the study was to analyse what is valued most by family carers undergoing bereavement of a palliative care home service in order to identify factors of quality of care. Qualitative exploratory study based on documentary analysis. Content analysis of 77 gratitude documents received over 8 years by a palliative home service in Odivelas, near Lisbon (Portugal) was undertaken, through an inductive approach and using investigator triangulation. Frequency of distinct categories was quantitatively defined. Three different content categories emerged from the analysis: a) Recognition of the care received and the value of particular aspects of care within recognised difficult situations included aspects such as kindness, listening, attention to the family, empathy, closeness, affection and the therapeutic relationships established (63/77 documents); b) Family recognition of the achievements of the palliative care team (29/77) indicated as relief from suffering for the patient and family, opportunity of dying at home, help in facing difficult situations, improvement in quality of life and wellbeing, and feeling of serenity during bereavement; c) Messages of support (45/77) related to the need of resources provided. The relational component emerges as an underlying key aspect of family carers' experience with palliative care home service. Family carers show spontaneous gratitude for the professionalism and humanity found in palliative care. The relational component of care emerges as key to achieve a high quality care experience of palliative care homes service, and could be one indicator of quality of palliative care.

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

PubMed

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

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

What Is Needed to Prepare Speech Pathologists to Work in Adult Palliative Care?

ERIC Educational Resources Information Center

Pascoe, Ashleigh; Breen, Lauren J.; Cocks, Naomi

2018-01-01

Background: Speech pathologists have a pivotal role in palliative care, assisting patients with swallowing and communication disorders, yet very little is known about the preparedness of speech pathologists to work in this field. Aims: To investigate the preparedness of speech pathologists for working in palliative care. The term 'palliative care'…

Neutrophil/Lymphocyte ratio and association with arch intervention in patients with hypoplastic left heart syndrome undergoing hybrid procedure.

PubMed

Mitchell, Elizabeth; Cheatham, John P; Sisk, James M; Nicholson, Lisa; Holzer, Ralf; Galantowicz, Mark; Cua, Clifford L

2014-01-01

Hybrid procedure is an alternative initial palliation for patients with hypoplastic left heart syndrome (HLHS). One major complication with this procedure is stenosis in the aortic arch isthmus possibly due to inflammation from the patent ductus arteriosus (PDA) stent. In adult studies, neutrophil/lymphocyte (N/L) ratio has been used as a marker for increased inflammation and has been associated with increased risk for coronary artery stent stenosis. The goal of this study was to determine if there were differences in N/L ratio between patients with HLHS undergoing hybrid procedure that required an arch intervention (AI-Group) vs. those that did not require an intervention (NAI-Group). Retrospective chart review was performed on patients with HLHS undergoing hybrid procedure between July 2002 and January 2013. Complete blood counts as well as differentials were recorded at four time periods: 1 day prehybrid palliation, one day posthybrid palliation, 1 week posthybrid palliation, and 3 weeks posthybrid palliation. One hundred six patients were evaluated (AI-Group = 38, NAI-Group = 68). AI-Group generally had a higher N/L ratio vs. NAI-group and this was significant immediately 1 day posthybrid palliation: AI-Group vs. NAI-Group, prehybrid (2.95 ± 2.62 vs. 2.44 ± 1.71), 1 day posthybrid (5.95 ± 4.16 vs. 4.34 ± 3.87, P < .05), 1 week posthybrid (2.72 ± 3.01 vs. 2.28 ± 2.12), and 3 weeks posthybrid (1.85 ± 1.24 vs. 1.45 ± 1.16), respectively. Lymphocyte percentage was significantly lower in the AI-Group vs. NAI-Group 3 weeks posthybrid palliation (33.00 + 11.30% vs. 40.65 + 16.82%). Patients that required an arch intervention after hybrid palliation had a higher N/L ratio immediately after the procedure. This may signify increased inflammatory reaction that places these patients at risk for stenosis. Future studies are needed to determine if N/L ratio is a robust marker to risk stratify patients undergoing the hybrid procedure for arch complications. © 2014 Wiley Periodicals, Inc.

[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.

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.

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 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.

Quantifying the burden of opioid medication errors in adult oncology and palliative care settings: A systematic review.

PubMed

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

2016-06-01

Opioids are the primary pharmacological treatment for cancer pain and, in the palliative care setting, are routinely used to manage symptoms at the end of life. Opioids are one of the most frequently reported drug classes in medication errors causing patient harm. Despite their widespread use, little is known about the incidence and impact of opioid medication errors in oncology and palliative care settings. To determine the incidence, types and impact of reported opioid medication errors in adult oncology and palliative care patient settings. A systematic review. Five electronic databases and the grey literature were searched from 1980 to August 2014. Empirical studies published in English, reporting data on opioid medication error incidence, types or patient impact, within adult oncology and/or palliative care services, were included. Popay's narrative synthesis approach was used to analyse data. Five empirical studies were included in this review. Opioid error incidence rate was difficult to ascertain as each study focussed on a single narrow area of error. The predominant error type related to deviation from opioid prescribing guidelines, such as incorrect dosing intervals. None of the included studies reported the degree of patient harm resulting from opioid errors. This review has highlighted the paucity of the literature examining opioid error incidence, types and patient impact in adult oncology and palliative care settings. Defining, identifying and quantifying error reporting practices for these populations should be an essential component of future oncology and palliative care quality and safety initiatives. © The Author(s) 2015.

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.

Factors influencing palliative care. Qualitative study of family physicians' practices.

PubMed Central

Brown, J. B.; Sangster, M.; Swift, J.

1998-01-01

OBJECTIVE: To examine factors that influence family physicians' decisions to practise palliative care. DESIGN: Qualitative method of in-depth interviews. SETTING: Southwestern Ontario. PARTICIPANTS: Family physicians who practise palliative care on a full-time basis, who practise on a part-time basis, or who have retired from active involvement in palliative care. METHOD: Eleven in-depth interviews were conducted to explore factors that influence family physicians' decisions to practise palliative care and factors that sustain their interest in palliative care. All interviews were audiotaped and transcribed verbatim. The analysis strategy used a phenomenological approach and occurred concurrently rather than sequentially. All interview transcriptions were read independently by the researchers, who then compared and combined their analyses. Final analysis involved examining all interviews collectively, thus permitting relationships between and among central themes to emerge. MAIN OUTCOME FINDINGS: The overriding theme was a common philosophy of palliative care focusing on acceptance of death, whole person care, compassion, communication, and teamwork. Participants' philosophies were shaped by their education and by professional and personal experiences. In addition, participants articulated personal and systemic factors currently affecting their practice of palliative care. CONCLUSIONS: Participants observed that primary care physicians should be responsible for their patients' palliative care within the context of interdisciplinary teams. For medical students to be knowledgeable and sensitive to the needs of dying patients, palliative care should be given higher priority in the curriculum. Finally, participants argued compellingly for transferring the philosophy of palliative care to the overall practice of medicine. PMID:9612588

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.

Barriers to the Collaboration Between Hematologists and Palliative Care Teams on Relapse or Refractory Leukemia and Malignant Lymphoma Patients' Care: A Qualitative Study.

PubMed

Morikawa, Miharu; Shirai, Yuki; Ochiai, Ryota; Miyagawa, Kiyoshi

2016-12-01

Palliative care service (PCS) has been shown to be utilized less in patients with leukemia and malignant lymphoma than in those with solid tumors. Previous studies have suggested hematologists' limited awareness of PCS as one of the reason for low PCS referral in hematology. However, little is known about such an awareness and potential barriers to collaboration between hematologists and PCS. The present study aimed to assess ematologists and palliative care specialists' perception about the roles of the hospital-based palliative care team (HPCT) and the barriers to collaboration between hematologists and palliative care teams on relapse or refractory leukemia and malignant lymphoma patients' care MATERIALS AND METHODS: A qualitative study was conducted using semistructured interviews with hematologists and palliative care specialists recruited from a hospital that provides hematology and palliative care by the HPCT. Data were evaluated via content analysis. The study included 11 hematologists and 10 palliative care specialists. Our results revealed that they shared many common perceptions about the roles and expectations of the HPCT. Additionally, 7 categories of barriers to collaboration were identified, including not feeling the need to refer, the difficulty in referral timing, the lack of aggressive approach, the negative image of the HPCT, the need for hematologic malignancy-oriented management, the lack of communication, and others. We have identified hematologists' and palliative care specialists' perceptions of the HPCT's roles and the barriers to their collaboration. A better understanding of such barriers may lead to effective collaboration between hematologists and the HPCT. © The Author(s) 2015.

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

PubMed

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

2018-05-01

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

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.

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.

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

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

PubMed

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

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

Palliative sedation in advanced cancer patients hospitalized in a specialized palliative care unit.

PubMed

Parra Palacio, Santiago; Giraldo Hoyos, Clara Elisa; Arias Rodríguez, Camilo; Mejía Arrieta, Daniel; Vargas Gómez, John Jairo; Krikorian, Alicia

2018-03-29

To describe the practice of palliative sedation (PS) in patients with advanced cancer in a specialized palliative care (PC) unit in Colombia. Descriptive prospective study including all adults with cancer hospitalized under PS in a cancer institute between January and July 2015 in Colombia. Variables examined were diagnosis, physical functioning, symptoms at the start of sedation, medications and dosages used, and type, level, and time of sedation. Descriptive and correlational statistics were obtained. Sixty-six patients were included, 70% of which were women. The patients had an average age of 61 years (range 24-87), and 74% had a Karnofsky Index (KI) of 50% or less. The most frequent diagnosis was breast cancer (22%), and 82% had metastatic cancer. The prevalence of palliative sedation was 2% and the most common symptoms indicating it were dyspnea (59%), delirium (45%), and pain (32%). All patients received midazolam as a sedative. The average time between the interval start and culmination of sedation was 44 h. There was a significant and inverse relationship between functionality and time under sedation. Palliative sedation is a valid therapeutic option for refractory symptoms causing suffering. The results correspond to international reports and guidelines, which suggests that PS is tailored to the needs of the individual patient while maintaining a high scientific standard, even in a context where PC is under development. However, further development of strategies and clear indications towards the use of PS in Colombia are needed, given its still scarce use.

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.

In real life, one-quarter of patients with hormone receptor-positive metastatic breast cancer receive chemotherapy as initial palliative therapy: a study of the Southeast Netherlands Breast Cancer Consortium.

PubMed

Lobbezoo, D J A; van Kampen, R J W; Voogd, A C; Dercksen, M W; van den Berkmortel, F; Smilde, T J; van de Wouw, A J; Peters, F P J; van Riel, J M G H; Peters, N A J B; de Boer, M; Peer, P G M; Tjan-Heijnen, V C G

2016-02-01

The objective of this study was to present initial systemic treatment choices and the outcome of hormone receptor-positive (HR+) metastatic breast cancer. All the 815 consecutive patients diagnosed with metastatic breast cancer in 2007-2009 in eight participating hospitals were identified. From the 611 patients with HR+ disease, a total of 520 patients with HER2-negative (HER2-) breast cancer were included. Initial palliative systemic treatment was registered. Progression-free survival (PFS) and overall survival (OS) per initial palliative systemic therapy were obtained using the Kaplan-Meier method and compared using the log-rank test. From the total of 520 patients with HR+/HER2- metastatic breast cancer, 482 patients (93%) received any palliative systemic therapy. Patients that received initial chemotherapy (n = 116) were significantly younger, had less comorbidity, had received more prior adjuvant systemic therapy and were less likely to have bone metastasis only compared with patients that received initial endocrine therapy (n = 366). Median PFS of initial palliative chemotherapy was 5.3 months [95% confidence interval (CI) 4.2-6.2] and of initial endocrine therapy 13.3 months (95% CI 11.3-15.5), with a median OS of 16.1 and 36.9 months, respectively. Initial chemotherapy was also associated with worse outcome in terms of PFS and OS after adjustment for prognostic factors. A high percentage of patients with HR+ disease received initial palliative chemotherapy, which was associated with worse outcome, even after adjustment of relevant prognostic factors. © The Author 2015. Published by Oxford University Press on behalf of the European Society for Medical Oncology. All rights reserved. For permissions, please email: journals.permissions@oup.com.

Out-of-hours primary care use at the end of life: a descriptive study

PubMed Central

Fisher, Rebecca FR; Lasserson, Daniel; Hayward, Gail

2016-01-01

Background Out-of-hours (OOH) primary care services are integral to the care of patients at end of life. Little is known about the OOH service usage of patients with palliative care needs. Aim To describe patterns of usage of patients presenting to an OOH service and coded as ‘palliative’. Design and setting A descriptive study of data from the Oxfordshire OOH service. Method A database of all patient contacts with the Oxfordshire OOH service from a 4-year period (June 2010–August 2014) was used to extract demographic and service usage data for all contacts to which clinicians had applied a ‘palliative’ code. Observed differences in demographic features between palliative and non-palliative contacts were tested using logistic regression. Results Out of a total of 496 931 contacts, there were 6045 contacts coded palliative; those ‘palliative’ contacts provided care to 3760 patients. Patients contacting the OOH service with palliative care needs did so predominantly during weekend daytime periods, and over a third had more than one contact. Patients were predictably older than the average population, but contacts coded as ‘palliative’ were relatively less deprived than contacts to the OOH service for all causes, even after adjusting for age and sex. Conclusion The current ‘one-size-fits-most’ model of OOH primary care may not allow for the specific needs of patients at the end of life. Wider analysis of palliative patient flow through urgent care services is needed to identify whether healthcare access at the end of life is inequitable, as well as the capacity requirements of a community-based service that can provide high-quality end-of-life care. PMID:27381487

[Distribution of resources for rendering medical care to cancer patients in hospices].

PubMed

Poliakov, I V; Zelenskaia, T M; Liptuga, M E

2000-01-01

Creation of a system of palliative care in the Russian Federation is a pressing problem of public health, which at present is going through the first stage of development. According to WHO estimations, at least 75% cancer patients need palliative care. The system of medical care to cancer patients functioning in countries with well-developed economy (United Kingdom, USA, Canada, Australia) intends equal distribution of resources between radical treatment and palliative care (including analgesia) and reflects the actual requirements of patients. The scope of care should be extended from symptomatic treatment to comprehensive (medical, psychological, social, and spiritual) care of patients and their families.

Core attitudes of professionals in palliative care: a qualitative study.

PubMed

Simon, Steffen T; Ramsenthaler, Christina; Bausewein, Claudia; Krischke, Norbert; Geiss, Gerlinde

2009-08-01

Self-awareness of one's own reactions towards patients and their relatives is of paramount importance for all professionals in palliative care. 'Core attitude' describes the way in which a person perceives himself and the world, and forms the basis for his actions and thoughts. The aim of this study is to explore what core attitude means for palliative care professionals and whether there is a specific core attitude in palliative care. Qualitative study with 10 face-to-face in-depth interviews with experts in palliative care (nurses, physicians, social workers, psychologists, chaplain) in Germany. Core attitude in palliative care can be best described with the following three domains: 1) personal characteristics; 2) experience of care; and 3) competence in care. Authenticity is the most important characteristic of professionals, along with honesty and mindfulness. Core attitude primarily becomes apparent in the relationship with the patient. Perception and listening are key competences. The experts emphasized the universality of the core attitude in the care of ill people. They stressed the importance and relevance of teaching core attitudes in palliative care education. In the field of palliative care, core attitude consists predominately of authenticity, manifests itself in relationships, and requires a high degree of perceptiveness.

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 pharmacological and nonpharmacological interventions. Strong evidence has been accumulated that aerobic exercise will reduce fatigue levels in cancer survivors and patients receiving cancer treatment. In the final stage of life, fatigue may provide protection and shielding from suffering for the patient and thus treatment may be detrimental. Identification of the time point, where treatment of fatigue is no longer indicated is important to alleviate distress at the end of life.

What happens during early outpatient palliative care consultations for persons with newly diagnosed advanced cancer? A qualitative analysis of provider documentation.

PubMed

Bagcivan, Gulcan; Dionne-Odom, J Nicholas; Frost, Jennifer; Plunkett, Margaret; Stephens, Lisa A; Bishop, Peggy; Taylor, Richard A; Li, Zhongze; Tucker, Rodney; Bakitas, Marie

2018-01-01

Early outpatient palliative care consultations are recommended by clinical oncology guidelines globally. Despite these recommendations, it is unclear which components should be included in these encounters. Describe the evaluation and treatment recommendations made in early outpatient palliative care consultations. Outpatient palliative care consultation chart notes were qualitatively coded and frequencies tabulated. Outpatient palliative care consultations were automatically triggered as part of an early versus delayed randomized controlled trial (November 2010 to April 2013) for patients newly diagnosed with advanced cancer living in the rural Northeastern US. In all, 142 patients (early = 70; delayed = 72) had outpatient palliative care consultations. The top areas addressed in these consultations were general evaluations-marital/partner status (81.7%), spirituality/emotional well-being (80.3%), and caregiver/family support (79.6%); symptoms-mood (81.7%), pain (73.9%), and cognitive/mental status (68.3%); general treatment recommendations-counseling (39.4%), maintaining current medications (34.5%), and initiating new medication (23.9%); and symptom-specific treatment recommendations-pain (22.5%), constipation (12.7%), depression (12.0%), advanced directive completion (43.0%), identifying a surrogate (21.8%), and discussing illness trajectory (21.1%). Compared to the early group, providers were more likely to evaluate general pain ( p = 0.035) and hospice awareness ( p = 0.005) and discuss/recommend hospice ( p = 0.002) in delayed group participants. Outpatient palliative care consultations for newly diagnosed advanced cancer patients can address patients' needs and provide recommendations on issues that might not otherwise be addressed early in the disease course. Future prospective studies should ascertain the value of early outpatient palliative care consultations that are automatically triggered based on diagnosis or documented symptom indicators versus reliance on oncologist referral.

[Four years of specialized outpatient palliative care in a rural area : Cooperation and acceptability from general practitioners' view].

PubMed

Kaiser, Florian; Sohm, Michael; Illig, Daniela; Vehling-Kaiser, Ursula; Haas, Michael

2016-07-01

In 2011, a specialized palliative home care was introduced in the counties of Landshut and Dingolfing. The aim of the current survey was to evaluate the cooperation, acceptance and need of palliative measures for patients particulary from the general practitioner's perspective. From January to March 2015, 198 general practitioners from the counties of Landshut and Dingolfing were contacted with questionnaires. The questionnaires consisted of 16 questions covering five different issues, and drew upon the practical experiences of the authors and earlier surveys from the literature. The questionnaires were sent by post containing a self-addressed and postpaid envelope. Completed questionnaires from 40 out of 198 contacted general practitioners (33 % female and 53 % male). Of these 85 % had cooperated with a SAPV team, 23 % had taken part in training for palliative medicine, 10 % intended to acquire a qualification and 10 % could imagine working in a SAPV team. In addition, 75 % stated that hospitalizations were avoided through the use of SAPV while 73 % felt that time and costs were saved for their own practices. The majority of general practitioners were satisfied with the work provided by the SAPV and the cooperation. Regarding additional palliative care for geriatric patients, 60 % believed that this was sensible. One main critique was that the information about including a patient in the SAPV program was transferred to the general practitioner too late. The current data show that general practitioners recognize the need for palliative medicine skills and predominately welcome the work of a specialized palliative care team in treating their patients. However, close cooperation and communication is necessary for a successful network between generalists and specialists in palliative care.

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

PubMed

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

2017-08-11

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

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

PubMed

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

2009-08-01

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

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.

Palliative care team visits. Qualitative study through participant observation

PubMed Central

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

2016-01-01

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

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.

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

PubMed

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

2013-12-01

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

Proposal for Development of EBM-CDSS (Evidence-Based Clinical Decision Support System) to Aid Prognostication in Terminally Ill Patients

DTIC Science & Technology

2013-10-01

monthly basis. The similar process is followed at TGH, where the research team mostly works with palliative care service. Through this process, the... Palliative Care at TGH. • We continue to regularly conduct meetings with TGH palliative care team and present the ongoing experience of our research study...to the TGH palliative care team. These meeting established a fruitful and trustful and working relationship with TGH palliative care team, which is

A National Observational Study of the Prevalence and Use of Enteral Tube Feeding, Parenteral Nutrition and Intravenous Glucose in Cancer Patients Enrolled in Specialized Palliative Care

PubMed Central

Orrevall, Ylva; Tishelman, Carol; Permert, Johan; Lundström, Staffan

2013-01-01

The use of artificial nutrition remains controversial for cancer patients in palliative care, and its prevalence is largely unknown. We therefore conducted a national study to investigate the prevalence, indications for, and perceived benefit of enteral/parenteral nutrition and intravenous glucose in this patient group. A cross-sectional study was performed within the palliative care research network in Sweden (PANIS), using a web-based survey with 24 questions on demographics, prescribed nutritional treatment, estimated survival and benefit from treatment. Data was received from 32 palliative care units throughout the country, representing 1083 patients with gastrointestinal and gynecological malignancies being the most common diagnoses. Thirteen percent of the patients received enteral/parenteral nutrition or intravenous glucose. Parenteral nutrition (PN) was significantly more common in home care units serving the urban Stockholm region (11%) than in other parts of the country (4%). Weight and appetite loss were the predominant indications for PN, with this treatment deemed beneficial for 75% of the palliative patients. Data show that there was great variation in PN use within the country. PN was predominately initiated when patients had weight and appetite loss but still had oral intake, indicating a use of PN that extends beyond the traditional use for patients with obstruction/semi obstruction. PMID:23340317

The magnitude, share and determinants of unpaid care costs for home-based palliative care service provision in Toronto, Canada.

PubMed

Chai, Huamin; Guerriere, Denise N; Zagorski, Brandon; Coyte, Peter C

2014-01-01

With increasing emphasis on the provision of home-based palliative care in Canada, economic evaluation is warranted, given its tremendous demands on family caregivers. Despite this, very little is known about the economic outcomes associated with home-based unpaid care-giving at the end of life. The aims of this study were to (i) assess the magnitude and share of unpaid care costs in total healthcare costs for home-based palliative care patients, from a societal perspective and (ii) examine the sociodemographic and clinical factors that account for variations in this share. One hundred and sixty-nine caregivers of patients with a malignant neoplasm were interviewed from time of referral to a home-based palliative care programme provided by the Temmy Latner Centre for Palliative Care at Mount Sinai Hospital, Toronto, Canada, until death. Information regarding palliative care resource utilisation and costs, time devoted to care-giving and sociodemographic and clinical characteristics was collected between July 2005 and September 2007. Over the last 12 months of life, the average monthly cost was $14 924 (2011 CDN$) per patient. Unpaid care-giving costs were the largest component - $11 334, accounting for 77% of total palliative care expenses, followed by public costs ($3211; 21%) and out-of-pocket expenditures ($379; 2%). In all cost categories, monthly costs increased exponentially with proximity to death. Seemingly unrelated regression estimation suggested that the share of unpaid care costs of total costs was driven by patients' and caregivers' sociodemographic characteristics. Results suggest that overwhelming the proportion of palliative care costs is unpaid care-giving. This share of costs requires urgent attention to identify interventions aimed at alleviating the heavy financial burden and to ultimately ensure the viability of home-based palliative care in future. © 2013 John Wiley & Sons Ltd.

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

PubMed

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

2018-06-01

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

Palliative care for older people – exploring the views of doctors and nurses from different fields in Germany

PubMed Central

Brueckner, Torben; Schumacher, Martin; Schneider, Nils

2009-01-01

Background Providing appropriate palliative care for older people is a major task for health care systems worldwide, and up to now it has also been one of the most neglected. Focusing on the German health care system, we sought to explore the attitudes of health professionals regarding their understanding of palliative care for older patients and its implementation. Methods In a qualitative study design, focus groups were established consisting of general practitioners, geriatricians, palliative care physicians, palliative care nurses and general nurses (a total of 29 participants). The group discussions were recorded, transcribed, coded and analysed using the methodological approach of Qualitative Description. Results Deficiencies in teamwork and conflicting role definitions between doctors and nurses and between family practitioners and medical specialists were found to be central problems affecting the provision of appropriate palliative care for older people. It was emphasized that there are great advantages to family doctors playing a leading role, as they usually have the longest contacts to the patients. However, the professional qualifications of family doctors were to some extent criticized. The general practitioners for their part criticized the increasing specialization on the field of palliative care. All groups complained that the German compensation system gives insufficient consideration to the time-consuming care of older patients, and about excessive bureaucracy. Conclusion General practitioners are the central health professionals in the delivery of palliative care for older people. They should however be encouraged to involve specialized services such as palliative care teams where necessary. With the German health care reform of 2007, a legal framework has been created that allows for this. As far as its realization is concerned, it must be ensured that the spotlight remains on the needs of the patients and not on policy conflicts and rivalries between health care professionals. Older people might particularly benefit if "talking" medicine and time-consuming care were properly catered for, financially and organizationally, in the health care system. PMID:19549336

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.

Primary tumor location as a predictor of the benefit of palliative resection for colorectal cancer with unresectable metastasis.

PubMed

Zhang, Rong-Xin; Ma, Wen-Juan; Gu, Yu-Ting; Zhang, Tian-Qi; Huang, Zhi-Mei; Lu, Zhen-Hai; Gu, Yang-Kui

2017-07-27

It is still under debate that whether stage IV colorectal cancer patients with unresectable metastasis can benefit from primary tumor resection, especially for asymptomatic colorectal cancer patients. Retrospective studies have shown controversial results concerning the benefit from surgery. This retrospective study aims to evaluate whether the site of primary tumor is a predictor of palliative resection in asymptomatic stage IV colorectal cancer patients. One hundred ninety-four patients with unresectable metastatic colorectal cancer were selected from Sun Yat-sen University Cancer Center Database in the period between January 2007 and December 2013. All information was carefully reviewed and collected, including the treatment, age, sex, carcinoembryonic antigen, site of tumor, histology, cancer antigen 199, number of liver metastases, and largest diameter of liver metastasis. The univariate and multivariate analyses were used to detect the relationship between primary tumor resection and overall survival of unresectable stage IV colorectal cancer patients. One hundred twenty-five received palliative resection, and 69 received only chemotherapy. Multivariate analysis indicated that primary tumor site was one of the independent factors (RR 0.569, P = 0.007) that influenced overall survival. For left-side colon cancer patients, primary tumor resection prolonged the median overall survival time for 8 months (palliative resection vs. no palliative resection: 22 vs. 14 months, P = 0.009); however, for right-side colon cancer patients, palliative resection showed no benefit (12 vs. 10 months, P = 0.910). This study showed that left-side colon cancer patients might benefit from the primary tumor resection in terms of overall survival. This result should be further explored in a prospective study.

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

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.

Pain relief, spiritual needs, and family support: three central areas in intercultural palliative care.

PubMed

Hanssen, Ingrid; Pedersen, Gry

2013-12-01

The purpose of this study was to draw out and coalesce the topic-specific information found in research literature regarding the provision of culturally sensitive palliative practice. This was a literature study and Gadamerian hermeneutic text analysis. It is more difficult to assess the level of pain in ethnic minority patients, and healthcare providers may become frustrated and interpret pain symptoms as fabrication. These patients are more likely to receive inadequate pain medication. Physical symptom management has become the priority in palliative care, but pain must also be viewed from the perspective of its social, cultural, and spiritual significance. Collectivist values may lead to an other-reliant and dependent coping style. This and religious demands may cause the family to rally around the patient. Many dying patients wish to be cared for at home by their families, but as the patient often has complex needs, the family may not be able to cope with the patient's care. Formal education and in-service programs are needed for healthcare providers, together with empirical studies regarding how to achieve more culturally appropriate care in intercultural palliative practice. The immigrant population needs to be educated about cancer and the various kinds of palliative and hospice care offered in the society in which they now live.

Telemedicine and Palliative Care: an Increasing Role in Supportive Oncology.

PubMed

Worster, Brooke; Swartz, Kristine

2017-06-01

With the emergence of telemedicine as a routine form of care in various venues, the opportunities to use technology to care for the most vulnerable, most ill cancer patients are extremely appealing. Increasingly, evidence supports early integration of palliative care with standard oncologic care, supported by recent NCCN guidelines to increase and improve access to palliative care. This review looks at the use of telemedicine to expand access to palliative care as well as provide better care for patients and families where travel is difficult, if not impossible. When telemedicine has been used, often in Europe, for palliative care, the results show improvements in symptom management, comfort with care as well as patient and family satisfaction. One barrier to use of telemedicine is the concerns with technology and technology-related complications in population that is often elderly, frail and not always comfortable with non-face-to-face physician care. There remain significant opportunities to explore this intersection of supportive care and telemedicine.

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

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

PubMed

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

2017-07-11

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

Palliative Care for People With Hepatocellular Carcinoma, and Specific Benefits for Older Adults.

PubMed

Woodrell, Christopher D; Hansen, Lissi; Schiano, Thomas D; Goldstein, Nathan E

2018-04-01

Hepatocellular carcinoma (HCC), the most common type of primary liver cancer, has a rapidly rising prevalence in the United States and a very poor overall rate of survival. This epidemic is driven by the cohort of aging Baby Boomers with hepatitis C viral infection and the increasing prevalence of cirrhosis as a result of nonalcoholic steatohepatitis. Because curative options are limited, the disease course creates, in patients and their families, distressing uncertainty around prognosis and treatment decisions. Older adults are disproportionately affected by HCC and have more comorbidities, adding to the complexity of the disease. This population would benefit from increased access to palliative care services, which can potentially complement the treatments throughout the disease trajectory. The purpose of this review was to use existing evidence to propose a new model of palliative care integration in patients with HCC. Thus, we focus on the HCC stage and the treatment algorithm, the ways that palliative care can offer support in this population at each stage, as well as elements that can enhance patient and family support throughout the entire disease trajectory, with an emphasis on the care of older adults with HCC. This is a narrative review in which we identify evidence-based ways that palliative care can help younger and older adults with HCC and their families, at each stage of HCC and throughout the disease trajectory. We propose ways to integrate HCC and palliative care based on the existing evidence in both fields. Palliative care offers support in symptom management, advanced care planning, and decision making in ways that are specific to each stage of HCC. We also discuss the evidence that illustrates the palliative care needs of patients with HCC that span the entire course of illness, including coping with the stigmatization of liver disease, addressing informational needs at different stages, and discussing quality of life longitudinally. Integrating palliative care into the treatment of patients with HCC has the potential to improve outcomes, although more research is needed to build this evidence base. Published by Elsevier Inc.

Staged Single Ventricle Palliation and Homozygous Sickle Cell Disease.

PubMed

Maddali, Madan Mohan; Junghare, Minakshi Sandip; Nishant, Arora Ram; Kandachar, Pranav Subbaraya; Valliattu, Johan

2016-04-01

Hypoxemia is a well-known trigger for precipitating a sickling crisis in patients with sickle cell disease. Patients undergoing staged single ventricle palliation have hypoxemia during the initial stages of the Fontan pathway. The successful completion of staged single ventricle palliation in a child with a combination of homozygous sickle cell disease and a single ventricle physiology that tolerate prolonged hypoxemia during earlier stages of Fontan pathway is described. © 2016 Wiley Periodicals, Inc.

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)

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.

Sedation at the end of life - a nation-wide study in palliative care units in Austria.

PubMed

Schur, Sophie; Weixler, Dietmar; Gabl, Christoph; Kreye, Gudrun; Likar, Rudolf; Masel, Eva Katharina; Mayrhofer, Michael; Reiner, Franz; Schmidmayr, Barbara; Kirchheiner, Kathrin; Watzke, Herbert Hans

2016-05-14

Sedation is used to an increasing extent in end-of-life care. Definitions and indications in this field are based on expert opinions and case series. Little is known about this practice at palliative care units in Austria. Patients who died in Austrian palliative care units between June 2012 and June 2013 were identified. A predefined set of baseline characteristics and information on sedation during the last two weeks before death were obtained by reviewing the patients' charts. The data of 2414 patients from 23 palliative care units were available for analysis. Five hundred two (21 %) patients received sedation in the last two weeks preceding their death, 356 (71 %) received continuous sedation until death, and 119 (24 %) received intermittent sedation. The median duration of sedation was 48 h (IQR 10-72 h); 168 patients (34 %) were sedated for less than 24 h. Indications for sedation were delirium (51 %), existential distress (32 %), dyspnea (30 %), and pain (20 %). Midazolam was the most frequently used drug (79 %), followed by lorazepam (13 %), and haloperidol (10 %). Sedated patients were significantly younger (median age 67 years vs. 74 years, p ≤ 0.001, r = 0.22), suffered more often from an oncological disease (92 % vs. 82 %, p ≤ 0.001, φ = 0.107), and were hospitalized more frequently (94 % vs. 76 %, p ≤ 0.001, φ = 0.175). The median number of days between admission to a palliative care ward/mobile palliative care team and death did not differ significantly in sedated versus non-sedated patients (10 vs. 9 days; p = 0.491). This study provides insights into the practice of end-of-life sedation in Austria. Critical appraisal of these data will serve as a starting point for the development of nation-wide guidelines for palliative sedation in Austria.

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

PubMed

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

2016-07-01

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

Companion animals and well-being in palliative care nursing: a literature review.

PubMed

MacDonald, Julie M; Barrett, David

2016-02-01

To evaluate and critique current knowledge regarding the role of animals in palliative care. To explore the impact that animals may have on the well-being of individuals and to identify gaps in the evidence base. There is recognition that having a companion animal will affect patient experience. Similarly, there has been some previous exploration on the use of specific animal assisted therapies for patients with different healthcare needs. A literature review was conducted to identify published and unpublished research about companion animals or animal-assisted therapy in palliative and/or end-of-life care. The primary objective was to explore the impact of animals on well-being at the end of life. A search for literature was carried out using a variety of databases and different combinations of search terms linked to animals in palliative care. Included works were critically appraised and thematically analysed. A limited range of literature was identified. From the small number of studies included in the review (n = 4), it appears that there is some evidence of animals (either companion animals or those used specifically to enhance care) having a positive impact on the patient experience. This study suggests that animals play a large part in the lives of people receiving palliative care. Using animals to support care may also offer some benefits to the patient experience. However, there appears to be a dearth of high-quality literature in this area. More research is therefore required. Nurses providing palliative care need to be aware of the part that a companion animal may play in the life of patients. There may also be the opportunity for nurses in some settings to integrate animal therapy into their provision of palliative care. © 2015 John Wiley & Sons Ltd.

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.

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/.

[Evaluation of 12 pilot projects to improve outpatient palliative care].

PubMed

Schmidt-Wolf, G; Elsner, F; Lindena, G; Hilgers, R-D; Heussen, N; Rolke, R; Ostgathe, C; Radbruch, L

2013-12-01

With a priority programme the German Cancer Aid supported the development of quality-assured outpatient palliative care to cover the whole country. The 12 regional pilot projects funded with the aim to improve outpatient palliative care in different models and different frameworks were concurrently monitored and evaluated. The supported projects, starting and ending individually, documented all patients who were cared for using HOPE (Hospice and palliative care evaluation) and MIDOS (Minimal documentation system for palliative patients). Total data were analyzed for 3239 patients decriptively. In addition to the quantitative data the experiences of the projects were recorded in a number of workshops (2008, 2009, 2010, and 2012). In particular, the experiences reported in the final meeting in July 2012 were considered for this article as well as the final reports for the German Cancer Aid. In the quantitative evaluation 85.6% of 3239 palliative care patients had a cancer diagnosis. In all model projects the goal of a network with close cooperation of primary providers, social support, and outpatient and inpatient specialist services has been achieved. For all projects, the initial financing of the German Cancer Aid was extremely important, because contracts with health insurance funds were negotiated slowly, and could then be built on the experiences with the projects. The participants of the project-completion meeting emphasized the need to carry out a market analysis before starting palliative care organizations considering the different regional structures and target groups of patients. Education, training and continuing education programs contribute significantly to the network. A reliably funded coordination center/case management across all institutions is extremely important. © Georg Thieme Verlag KG Stuttgart · New York.

Palliative Sedation With Propofol for an Adolescent With a DNR Order.

PubMed

Johnson, Liza-Marie; Frader, Joel; Wolfe, Joanne; Baker, Justin N; Anghelescu, Doralina L; Lantos, John D

2017-08-01

Death from cancer is often painful. Usually, the pain can be relieved in ways that allow patients to remain awake and alert until the end. Sometimes, however, the only way to relieve pain is to sedate patients until they are unconscious. This method has been called palliative sedation therapy. Palliative sedation therapy is controversial because it can be misunderstood as euthanasia. We present a case in which an adolescent who is dying of leukemia has intractable pain. Experts in oncology, ethics, pain management, and palliative care discuss the trade-offs associated with different treatment strategies. Copyright © 2017 by the American Academy of Pediatrics.

An Australian casemix classification for palliative care: lessons and policy implications of a national study.

PubMed

Eagar, Kathy; Gordon, Robert; Green, Janette; Smith, Michael

2004-04-01

To provide a nontechnical discussion of the development of a palliative care casemix classification and some policy implications of its implementation. 3866 palliative care patients who, in a three month period, had 4596 episodes of care provided by 58 palliative care services in Australia and New Zealand. A detailed clinical and service utilization profile was collected on each patient with staff time and other resources measured on a daily basis. A statistical summary of the clinical variables was compiled as the first stage of the analysis. Palliative care phase was found to be a good predictor of resource use, with patients fairly evenly distributed across the five categories. Clients treated in an inpatient setting had poorer function and higher symptom severity scores than those treated in an ambulatory setting, a result that is not surprising in this Australian setting. Implementation of the resultant AN-SNAP classification has been proceeding since 1998 in some Australian jurisdictions. The development and implementation of a classification such as AN-SNAP provides the possibility of having a consistent approach to collecting palliative care data in Australia as well as a growing body of experience on how to progressively improve the classification over time.

Enhancing the role of case managers with specialty populations: development and evaluation of a palliative care education program.

PubMed

Howell, Doris; Prestwich, Catherine; Laughlin, Emmy; Giga, Nasreen

2004-01-01

Palliative home care is an important component of the care system for patients at the end of life and case management is considered an essential element of the Canadian home care system. Case managers play a critical role in allocating resources, thus influencing the costs and the viability of palliative home care. Case management education programs focused on care coordination with specialty palliative care populations are nonexistent. An education program targeted at improving the knowledge and skills of case managers in allocating resources to palliative care populations was developed and pilot-tested in a metropolitan Canadian city home care program. Core curriculum was based on an initial learning needs assessment and used case-based problem solving to enhance case-management skills. An improvement in knowledge was noted on posttests and case managers described increased comfort and confidence in their role as case managers to this patient population. Home care organizations caring for palliative care populations must ensure case managers are prepared for case management roles with specialty populations if the home is to be rendered an appropriate and viable care setting for patients at the end of life.

A Summary of Pediatric Palliative Care Team Structure and Services as Reported by Centers Caring for Children with Cancer.

PubMed

Weaver, Meaghann S; Rosenberg, Abby R; Tager, Julia; Wichman, Christopher S; Wiener, Lori

2018-04-01

Little is known about the composition, availability, integration, communication, perceived barriers, and work load of pediatric palliative care (PPC) providers serving children and adolescents with cancer. To summarize the structure and services of programs to better understand successes and gaps in implementing palliative care as a standard of care. Cross-sectional online survey about the palliative care domains determined by the Psychosocial Care of Children with Cancer and Their Families Workgroup. A total of 142 surveys were completed with representation from 18 countries and 39 states. Three-fourths of sites reported having a PPC program available for the pediatric cancer population at their center. Over one-fourth (28%) have been in existence less than five years. Fewer than half of sites (44%) offered 24/7 access to palliative care consultations. Neither hospital-based nor local community hospice services were available for pediatric patients at 24% of responding sites. A specific inpatient PPC unit was available at 8% of sites. Criteria for automatic palliative referrals ("trigger" diagnoses) were reported by 44% respondents. The presence of such "triggers" increased the likelihood of palliative principle introduction 3.41 times (p < 0.003). Six percent of respondents perceived pediatric oncology patients and their families "always" were introduced to palliative care concepts and 17% reported children and families "always" received communication about palliative principles. The most prevalent barriers to palliative care were at the provider level. Children and adolescents with cancer do not yet receive concurrent palliative care as a universal standard.

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

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.

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 the present study highlight the need for more support and education for oncologists less comfortable with EOL care because their patients might receive lower levels of both primary and secondary palliative care. ©AlphaMed Press.

[Single-dose palliative radiotherapy in inoperable non-small-cell lung carcinoma].

PubMed

Scolaro, T; Bacigalupo, A; Giudici, S; Guenzi, M; Vitale, V

1995-12-01

The treatment of choice for advanced inoperable non-small cell lung cancer (NSCLC) is radiation therapy. Palliative radiotherapy schedules vary considerably in different centers, but a 30-Gy dose given in ten fractions over two weeks is a typical standard schedule. Our study was aimed at investigating whether a shorter course of only one 10-Gy fraction allows good palliation in the treatment of inoperable NSCLC patients whose main symptoms are related to an intrathoracic lesion. Patients of both sexes and any age, untreated with radiotherapy, with inoperable and histologically or cytologically proved NSCLC were examined. Seventeen patients, too advanced for radical "curative" radiotherapy and whose main symptoms were related to primary intrathoracic lesions, entered the study even though they had metastases. On admission, 76% (13/17) of patients had cough 76% (13/17) dyspnea, 70.7% (12/17) chest pain and 23.6% (4/17) hemoptysis. They received a single dose of 10 Gy, delivered with an 18-Mv linear accelerator via anteroposteriorly opposing portals without spinal cord shielding. Treatment volume usually included the macroscopically detected lesion identified with a CT simulator. Palliation of symptoms was achieved in high rates of patients: 46% for cough, 69% for dyspnea, 83% for pain and 75% for hemoptysis. These results were obtained within one month of treatment. Unfortunately, palliation of symptoms did not last long, decreasing to 42% within two months of the end of treatment and to 32% at three months. Four patients were retreated, one patient three months and three patients two months after the end of radiotherapy. Ten Gy to the target volume were administered as retreatment with spinal cord shielding. Side-effects were mild: nausea in 3 patients (17%), vomiting in one patient (5%) and grade-II dysphagia in two patients were observed and classified according to WHO criteria. Pain increased 24 hours after radiotherapy in five patients. We can conclude that single dose radiotherapy yields good, but short, palliation of symptoms with acceptable side-effects.

Providing Optimal Palliative Care for Persons Living with Dementia: A Comparison of Physician Perceptions in the Netherlands and the United Kingdom.

PubMed

Brazil, Kevin; Galway, Karen; Carter, Gillian; van der Steen, Jenny T

2017-05-01

The European Association for Palliative Care (EAPC) recently issued a framework that defines optimal palliative care in dementia. However, implementation of the guidelines may pose challenges for physicians working with dementia patients in practice. To measure and compare the perceptions of physicians in two European regions regarding the importance and challenges of implementing recommendations for optimal palliative care in dementia patients. Cross-sectional observational study. The Netherlands and the United Kingdom. Physicians (n = 317) providing palliative care to patients with dementia. Postal survey. Physicians in the Netherlands and Northern Ireland (NI), United Kingdom, prioritized the same domains of optimal palliative care for dementia and these match the priorities in the EAPC-endorsed guidelines. Respondents in both countries rated lack of education of professional teams and lack of awareness of the general public among the most important barriers to providing palliative care in dementia. NI respondents also identified access to specialist support as a barrier. The results indicate that there is a strong consensus among experts, elderly care physicians, and general practitioners across a variety of settings in Europe that person-centered care involving optimal communication and shared decision making is the top priority for delivering optimal palliative care in dementia. The current findings both support and enhance the new recommendations ratified by the EAPC. To take forward the implementation of EAPC guidelines for palliative care for dementia, it will be necessary to assess the challenges more thoroughly at a country-specific level and to design and test interventions that may include systemic changes to help physicians overcome such challenges.

Laser palliation of the HIV+ patient

NASA Astrophysics Data System (ADS)

Convissar, Robert A.

2003-12-01

Many oral manifestations of HIV infection can be used as markers for degree of immunosupression. These manifestations may be treated with antibiotics, analgesics, and antineoplastics, which may interact and interfere with antiviral agents used to treat the disease, and possibly exacerbate it. Dentists will see more HIV-infected patients as medical research transforms this disease into a chronic illness. Lasers have been shown to be effective instruments in palliation of oral manifestations of HIV infection. The use of lasers to palliate the painful symptoms of three oral manifestations of HIV infection is described. The advantages and benefits to both patient and dentist will be discussed. The paper does not address the use of lasers as a modality to treat or cure HIV infection -- only to palliate some of its symptoms.

[Achievement and Future Direction of the PEACE Project - A National Education Project for Palliative Care Education].

PubMed

Kizawa, Yoshiyuki; Yamamoto, Ryo

2017-07-01

Although palliative care is assuming an increasingly important role in patient care, most physicians did not learn to provide palliative care during their medical training. To address these serious deficiencies in physician training in palliative care, government decided to provide basic palliative education program for all practicing cancer doctors as a national policy namely Palliative care Emphasis program on symptom management and Assessment for Continuous medical Education(PEACE). The program was 2-days workshop based on adult learning theory and focusing on symptom management and communication. In this 9 years, 4,888 educational workshop has been held, and 93,250 physicians were trained. In prospective observational study, both knowledges and difficulties practicing palliative care were significantly improved. In 2017, the new palliative care education program will be launched including combined program of e-learning and workshop to provide tailor made education based on learner's readiness and educational needs in palliative care.

Palliative sedation: not just normal medical practice. Ethical reflections on the Royal Dutch Medical Association's guideline on palliative sedation.

PubMed

Janssens, Rien; van Delden, Johannes J M; Widdershoven, Guy A M

2012-11-01

The main premise of the Royal Dutch Medical Association's (RDMA) guideline on palliative sedation is that palliative sedation, contrary to euthanasia, is normal medical practice. Although we do not deny the ethical distinctions between euthanasia and palliative sedation, we will critically analyse the guideline's argumentation strategy with which euthanasia is demarcated from palliative sedation. First, we will analyse the guideline's main premise, which entails that palliative sedation is normal medical treatment. After this, we will critically discuss three crucial propositions of the guideline that are used to support this premise: (1) the patient's life expectancy should not exceed 2 weeks; (2) the aim of the physician should be to relieve suffering and (3) expert consultation is optional. We will conclude that, if inherent problematic aspects of palliative sedation are taken seriously, palliative sedation is less normal than it is now depicted in the guideline.

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.

Connecting with patients and instilling realism in an era of emerging communication possibilities: a review on palliative care communication heading to telecare practice.

PubMed

van Gurp, Jelle; Hasselaar, Jeroen; van Leeuwen, Evert; Hoek, Patrick; Vissers, Kris; van Selm, Martine

2013-12-01

Appropriate palliative care communication is pivotal to optimizing the quality of life in dying patients and their families. This review aims at describing communication patterns in palliative care and discussing potential relations between communication patterns and upcoming telecare in the practice of palliative care. This review builds on a systematic five-step qualitative analysis of the selected articles: 1. Development of a 'descriptive table of studies reviewed' based on the concept of genre, 2. Open coding of table content and first broad clustering of codes, 3. Intracluster categorization of inductive codes into substantive categories, 4. Constant inter- and intracluster comparison results in identification of genres, and 5. Labeling of genres. This review includes 71 articles. In the analysis, two communication genres in palliative care proved to be dominant: the conversation to connect, about creating and maintaining a professional-patient/family relationship, and the conversation to instill realism, about telling a clinical truth without diminishing hope. The abovementioned two genres clarify a logical intertwinement between communicative purposes, the socio-ethical background underlying palliative care practice and elements of form. Our study supports understanding of current communication in palliative care and anticipates future communicative actions in an era of new communication technologies. Copyright © 2013 Elsevier Ireland Ltd. All rights reserved.

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

PubMed

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

2017-03-01

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

Translating a US Early Palliative Care Model for Turkey and Singapore.

PubMed

Akyar, Imatullah; Dionne-Odom, James N; Yang, Grace Meijuan; Bakitas, Marie A

2018-01-01

The field of palliative care is growing in acceptance and sophistication globally. No longer considered just for patients at end-of-life, palliative care is now being incorporated early in the disease trajectory. Despite professional guidelines supporting early palliative care, there are few models that have been created that can be translated into practice cross-culturally. In the United States, the Educate, Nurture, Advise, Before, Life Ends (ENABLE) early palliative care telehealth model has demonstrated effectiveness in improving quality of life, mood, symptom relief, and survival for patients with cancer and is now being tested in patients with heart failure. Family caregivers of patients who have received ENABLE concurrent with their care recipients have also demonstrated positive outcomes in quality of life and caregiver burden. Internationally, a number of investigators are culturally adapting ENABLE for patients and family caregivers. While some elements of ENABLE, such as symptom management and self-care, and the caregiving role are relevant cross-culturally, others have been built on Western principles of self-determination or represent concepts such as advance care planning which will require more cultural adaptation. In addition, ENABLE was initially an in-person approach that was converted to telehealth to accommodate a rural population-it will be important to understand cultural norms related to receiving care by phone or if an in-person approach will be more culturally acceptable. This paper describes efforts in Turkey and Singapore to culturally adapt the ENABLE early palliative care principles for their countries.

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

PubMed

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

2014-03-01

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

Translating a US Early Palliative Care Model for Turkey and Singapore

PubMed Central

Akyar, Imatullah; Dionne-Odom, James N.; Yang, Grace Meijuan; Bakitas, Marie A.

2018-01-01

The field of palliative care is growing in acceptance and sophistication globally. No longer considered just for patients at end-of-life, palliative care is now being incorporated early in the disease trajectory. Despite professional guidelines supporting early palliative care, there are few models that have been created that can be translated into practice cross-culturally. In the United States, the Educate, Nurture, Advise, Before, Life Ends (ENABLE) early palliative care telehealth model has demonstrated effectiveness in improving quality of life, mood, symptom relief, and survival for patients with cancer and is now being tested in patients with heart failure. Family caregivers of patients who have received ENABLE concurrent with their care recipients have also demonstrated positive outcomes in quality of life and caregiver burden. Internationally, a number of investigators are culturally adapting ENABLE for patients and family caregivers. While some elements of ENABLE, such as symptom management and self-care, and the caregiving role are relevant cross-culturally, others have been built on Western principles of self-determination or represent concepts such as advance care planning which will require more cultural adaptation. In addition, ENABLE was initially an in-person approach that was converted to telehealth to accommodate a rural population-it will be important to understand cultural norms related to receiving care by phone or if an in-person approach will be more culturally acceptable. This paper describes efforts in Turkey and Singapore to culturally adapt the ENABLE early palliative care principles for their countries. PMID:29379831

Palliative sedation: the position statement of the Italian National Committee for Bioethics.

PubMed

Orsi, Luciano; Gristina, Giuseppe R

2017-05-01

In January 2016 the Italian National Bioethics Committee (NBC) published a position statement entitled Deep and continuous palliative sedation in the imminence of death, related to the use of sedation and analgesia for relief from pain and psychological distress in dying patients. In this statement the Committee points out the clinical and ethical appropriateness of palliative sedation as a therapeutic procedure. As a result, today palliative sedation has to be considered useful, scientifically safe and reliable, and acknowledged as an integral part of good clinical practice. At the same time, the position statement, once and for all, makes clear that palliative sedation cannot and must not be equated with the practice of euthanasia. Thus, this document should be known by health professionals caring for dying patients not only in palliative as well as in intensive care settings, but it should be also considered as a milestone aimed to encourage and ease a widespread implementation of this procedure in all health care settings.

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 reporting suffering indicated substantial suffering severity from specific symptoms (ie, a great deal or a lot) including nausea, 52.3% (57 of 109), loss of appetite, 50.5% (49 of 97), constipation 30.4% (21 of 69), pain 30.2% (29 of 96), anxiety 28.6% (22 of 77), depression 28.1% (18 of 64), and diarrhea 23.1% (12 of 52). Few children and parents expressed opposition to early palliative care involvement (2 [1.6%] and 8 [6.2%]) or perceived any detrimental effects on their relationship with their oncologist (6 [4.7%] and 5 [3.9%]), loss of hope (3 [2.3%] and 10 [7.8%]), or therapy interference (3 [2.3%] and 2 [1.6%], respectively). Intradyad concordance was low overall: 26% to 29% for exact concordance and 40% to 69% for agreement within 1 response category. Significant differences in patient-parent attitudes toward aspects of early palliative care included child participants being more likely than their parents (40.3% [n = 52] vs 17.8% [n = 23]) to indicate that palliative care would have been helpful for treating their symptoms (P < .001). Pediatric oncology patients experience a high degree of symptom-related suffering early in cancer therapy, and very few patients or parents in this study expressed negative attitudes toward early palliative care. Our findings suggest that pediatric oncology patients and families might benefit from, and are not a barrier to, early palliative care integration in oncology.

A Person-Centered, Registry-Based Learning Health System for Palliative Care: A Path to Coproducing Better Outcomes, Experience, Value, and Science

PubMed Central

Kamal, Arif H.; Kirkland, Kathryn B.; Meier, Diane E.; Nelson, Eugene C.; Pantilat, Steven Z.

2018-01-01

Abstract Background: Palliative care offers an approach to the care of people with serious illness that focuses on quality of life and aligning care with individual and family goals, and values in the context of what is medically achievable. Objective: Measurement of the impact of palliative care is critical for determining what works for which patients in what settings, to learn, improve care, and ensure access to high value care for people with serious illness. Methods: A learning health system that includes patients and families partnering with clinicians and care teams, is directly linked to a registry to support networks for improvement and research, and offers an ideal framework for measuring what matters to a range of stakeholders interested in improving care for this population. Measurements: Measurement focuses on the individual patient and family experience as the fundamental outcome of interest around which all care delivery is organized. Results: We describe an approach to codesigning and implementing a palliative care registry that functions as a learning health system, by combining patient and family inputs and clinical data to support person-centered care, quality improvement, accountability, transparency, and scientific research. Discussion: The potential for a palliative care learning health system that, by design, brings together enriched information environments to support coproduction of healthcare and facilitated peer networks to support patients and families, collaborative clinician networks to support palliative care program improvement, and collaboratories to support research and the application of research to benefit individual patients is immense. PMID:29091509

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.

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 interventions. Physician-reported and nurse-reported difficulties decreased significantly after the introduction of the interventions. Qualitative interviews showed improved communication and cooperation between health-care professionals because of greater opportunities for interactions at various levels. A regional programme of interventions could improve the quality of palliative care. Improvement of communication between health-care professionals is key to improvement of services. Third Term Comprehensive Control Research for Cancer Health and Labor Sciences Research Grants of the Ministry of Health, Labour and Welfare of Japan. Copyright © 2013 Elsevier Ltd. All rights reserved.

Palliative Care Psychiatry: Update on an Emerging Dimension of Psychiatric Practice

PubMed Central

Fairman, Nathan

2013-01-01

Palliative care psychiatry is an emerging subspecialty field at the intersection of Palliative Medicine and Psychiatry. The discipline brings expertise in understanding the psychosocial dimensions of human experience to the care of dying patients and support of their families. The goals of this review are (1) to briefly define palliative care and summarize the evidence for its benefits, (2) to describe the roles for psychiatry within palliative care, (3) to review recent advances in the research and practice of palliative care psychiatry, and (4) to delineate some steps ahead as this sub-field continues to develop, in terms of research, education, and systems-based practice. PMID:23794027

Palliative care in Argentina: perspectives from a country in crisis.

PubMed

De Simone, Gustavo G

2003-01-01

Argentina is a large South American country with a high prevalence of chronic disease-related mortality and a clear need for implementation of palliative care. Primary concerns related to palliative care are cultural, socio-economic and educational. Increasing poverty, patients and families receiving inadequate information about their diagnosis or prognosis, drug availability and costs, and insufficient knowledge by health care providers are obstacles to palliative care. Palliative care programs are developing throughout the country and methods by which they are meeting their needs are described. Several Argentinean palliative care initiatives are described and the role of the Pallium Latinomérica training program is discussed.

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.

Do palliative care interventions reduce emergency department visits among patients with cancer at the end of life? A systematic review.

PubMed

DiMartino, Lisa D; Weiner, Bryan J; Mayer, Deborah K; Jackson, George L; Biddle, Andrea K

2014-12-01

Frequent emergency department (ED) visits are an indicator of poor quality of cancer care. Coordination of care through the use of palliative care teams may limit aggressive care and improve outcomes for patients with cancer at the end of life. To systematically review the literature to determine whether palliative care interventions implemented in the hospital, home, or outpatient clinic are more effective than usual care in reducing ED visits among patients with cancer at the end of life. PubMed, EMBASE, and CINAHL databases were searched from database inception to May 7, 2014. Only randomized/non-randomized controlled trials (RCTs) and observational studies examining the effect of palliative care interventions on ED visits among adult patients with cancer with advanced disease were considered. Data were abstracted from the articles that met all the inclusion criteria. A second reviewer independently abstracted data from 2 articles and discrepancies were resolved. From 464 abstracts, 2 RCTs, 10 observational studies, and 1 non-RCT/quasi-experimental study were included. Overall there is limited evidence to support the use of palliative care interventions to reduce ED visits, although studies examining effect of hospice care and those conducted outside of the United States reported a statistically significant reduction in ED visits. Evidence regarding whether palliative care interventions implemented in the hospital, home or outpatient clinic are more effective than usual care at reducing ED visits is not strongly substantiated based on the literature reviewed. Improvements in the quality of reporting for studies examining the effect of palliative care interventions on ED use are needed.

Palliative care need and management in the acute hospital setting: a census of one New Zealand Hospital

PubMed Central

2013-01-01

Background Improving palliative care management in acute hospital settings has been identified as a priority internationally. The aim of this study was to establish the proportion of inpatients within one acute hospital in New Zealand who meet prognostic criteria for palliative care need and explore key aspects of their management. Methods A prospective survey of adult hospital inpatients (n = 501) was undertaken. Case notes were examined for evidence that the patient might be in their last year of life according to Gold Standards Framework (GSF) prognostic indicator criteria. For patients who met GSF criteria, clinical and socio-demographic information were recorded. Results Ninety-nine inpatients met GSF criteria, representing 19.8% of the total census population. The patients’ average age was 70 years; 47% had a primary diagnosis of cancer. Two thirds had died within 6 months of their admission. Seventy-eight of the 99 cases demonstrated evidence that a palliative approach to care had been adopted; however documentation of discussion about goals of care was very limited and only one patient had evidence of an advance care plan. Conclusion One fifth of hospital inpatients met criteria for palliative care need, the majority of whom were aged >70 years. Whilst over three quarters were concluded to be receiving care in line with a palliative care approach, very little documented evidence of discussion with patients and families regarding end of life issues was evident. Future research needs to explore how best to support ‘generalist’ palliative care providers in initiating, and appropriately recording, such discussions. PMID:23537092

Supportive and palliative care of pancreatic cancer.

PubMed

Fazal, Salman; Saif, Muhammad Wasif

2007-03-10

Pancreatic cancer is one of the most lethal malignancies. An estimated 32,300 patients will die of pancreatic cancer in year 2006. It is the tenth most common malignancy in the United States. Despite recent advances in pathology, molecular basis and treatment, the overall survival rate remains 4% for all stages and races. Palliative care represents an important aspect of care in patient with pancreatic malignancy. Identifying and treating disease related symptomology are priorities. As a physician taking care of these patients it is essential to know these symptoms and treatment modalities. This review discusses symptom management and supportive care strategies. Common problems include pain, intestinal obstruction, biliary obstruction, pancreatic insufficiency, anorexia-cachexia and depression. Success is needed in managing these symptoms to palliate patients with advanced pancreatic cancer. Pancreatic cancer is a model illness to learn the palliative and supportive management in cancer patient. It is important for oncologists to recognize the importance of control measures and supportive measures that can minimize the symptoms of advanced disease and side effects of cancer treatment.

Development and challenges of palliative care in Indonesia: role of psychosomatic medicine.

PubMed

Putranto, Rudi; Mudjaddid, Endjad; Shatri, Hamzah; Adli, Mizanul; Martina, Diah

2017-01-01

To summarize the current status of palliative care and the role of psychosomatic medicine in Indonesia. Palliative care is not a new issue in Indonesia, which has been improving palliative care since 1992 and developed a palliative care policy in 2007 that was launched by the Indonesian Ministry of Health. However, the progress has been slow and varied across the country. Currently, palliative care services are only available in a few major cities, where most of the facilities for cancer treatment are located. Psychosomatic medical doctors have advantages that contribute to palliative care because of their special training in communication skills to deal with patients from the standpoints of both mind and body. Palliative care services in Indonesia are established in some hospitals. Future work is needed to build capacity, advocate to stakeholders, create care models that provide services in the community, and to increase the palliative care workforce. Psychosomatic medicine plays an important role in palliative care services.

[Suicidal drug overdose while receiving palliative home care: a case report].

PubMed

Mosich, Veronika; Müller-Busch, H Christof

2014-05-01

Suicidal thoughts are a common phenomenon in palliative care which can be seen in around 10% of the patients. There is very little knowledge about attempted and committed suicide. This article is a case report about a patient with lung cancer in a terminal state of illness who ingested drugs in a toxic dose while receiving palliative home care. This article deals with ethical issues in medical treatment and various ways of decision-making.

Palliative care and the arts: vehicles to introduce medical students to patient-centred decision-making and the art of caring.

PubMed

Centeno, Carlos; Robinson, Carole; Noguera-Tejedor, Antonio; Arantzamendi, María; Echarri, Fernando; Pereira, José

2017-12-16

Medical Schools are challenged to improve palliative care education and to find ways to introduce and nurture attitudes and behaviours such as empathy, patient-centred care and wholistic care. This paper describes the curriculum and evaluation results of a unique course centred on palliative care decision-making but aimed at introducing these other important competencies as well. The 20 h-long optional course, presented in an art museum, combined different learning methods, including reflections on art, case studies, didactic sessions, personal experiences of faculty, reflective trigger videos and group discussions. A mixed methods approach was used to evaluate the course, including a) a post-course reflective exercise; b) a standardized evaluation form used by the University for all courses; and c) a focus group. Twenty students (2nd to 6th years) participated. The course was rated highly by the students. Their understanding of palliative care changed and misconceptions were dispelled. They came to appreciate the multifaceted nature of decision-making in the palliative care setting and the need to individualize care plans. Moreover, the course resulted in a re-conceptualization of relationships with patients and families, as well as their role as future physicians. Palliative care decision-making therefore, augmented by the visual arts, can serve as a vehicle to address several competencies, including the introduction of competencies related to being patient-centred and empathic.

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

NASA Astrophysics Data System (ADS)

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

2002-06-01

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

The Role of Palliative Surgery in Gynecologic Cancer Cases

PubMed Central

Hope, Joanie Mayer

2013-01-01

The decision to undergo major palliative surgery in end-stage gynecologic cancer is made when severe disease symptoms significantly hinder quality of life. Malignant bowel obstruction, unremitting pelvic pain, fistula formation, tumor necrosis, pelvic sepsis, and chronic hemorrhage are among the reasons patients undergo palliative surgeries. This review discusses and summarizes the literature on surgical management of malignant bowel obstruction and palliative pelvic exenteration in gynecologic oncology. PMID:23299775

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.

Variation in palliative care of esophageal cancer in clinical practice: factors associated with treatment decisions.

PubMed

Opstelten, Jorrit L; de Wijkerslooth, Laetitia R H; Leenders, Max; Bac, Dirk Jan; Brink, Menno A; Loffeld, Boudewijn C A J; Meijnen-Bult, Mariëlle J F; Minderhoud, Itta M; Verhagen, Marc A M T; van Oijen, Martijn G H; Siersema, Peter D

2017-02-01

Various treatments are available for the palliation of esophageal cancer, but the optimal therapeutic approach is unclear. This study aimed to assess the palliative treatment modalities used in patients with inoperable esophageal cancer and to identify factors associated with treatment decisions. A population-based, retrospective cohort study was conducted using data from the nationwide Netherlands Cancer Registry and medical records of seven participating hospitals. Patients diagnosed with stage III-IV inoperable esophageal or gastric cardia cancer in the central part of the Netherlands between 2001 and 2010 were included. Logistic regression analyses were performed to identify determinants of treatment choices. In total, 736 patients were initially treated with best supportive care (21%), stent placement (19%), chemotherapy (18%), external beam radiotherapy (EBRT) (16%), brachytherapy (6%), a combination of EBRT and brachytherapy (6%), a combination of chemotherapy and EBRT (5%) or another treatment (9%). The palliative approach varied for disease stage (P < 0.01) and hospital of diagnosis (P < 0.01). Independent factors affecting treatment decisions were age, degree of dysphagia, tumor histology, tumor localization, disease stage, and hospital of diagnosis. For example, patients diagnosed in one hospital were less likely to be treated with EBRT than with stent placement compared to patients in another hospital (odds ratio 0.20, 95% confidence interval 0.07-0.59). In conclusion, the initial palliative approach of patients with inoperable esophageal cancer varies widely and is not only associated with patient- and disease-related factors, but also with hospital of diagnosis. These findings suggest a lack of therapeutic guidance and highlight the need for more evidence on palliative care strategies for esophageal cancer. © 2016 International Society for Diseases of the Esophagus.

Evaluating an holistic assessment tool for palliative care practice.

PubMed

McIlfatrick, Sonja; Hasson, Felicity

2014-04-01

To evaluate a holistic assessment tool for palliative care practice. This included identifying patients' needs using the holistic tool and exploring the usability, applicability and barriers and facilitators towards implementation in practice. The delivery of effective holistic palliative care requires a careful assessment of the patients' needs and circumstances. Whilst holistic assessment of palliative care needs is advocated, questions exist around the appropriateness of tools to assist this process. Mixed-method research design. Data collection involved an analysis of piloted holistic assessments undertaken using the tool (n = 132) and two focus groups with healthcare professionals (n = 10). The tool enabled health professionals to identify and gain an understanding of the needs of the patients, specifically in relation to the physical healthcare needs. Differences, however, between the analysis of the tool documentation and focus group responses were identified in particular areas. For example, 59 (68·8%) respondents had discussed preferred priorities of care with the patient; however, focus group comments revealed participants had concerns around this. Similarly, whilst over half of responses (n = 50; 57·5%) had considered a prognostic clinical indicator for the patient as an action, focus group results indicated questions around healthcare professionals' knowledge and perceived usefulness of such indicators. Positive aspects of the tool were that it was easy to understand and captured the needs of individuals. Negative aspects of the tool were that it was repetitive and the experience of assessors required consideration. The tool evaluation identified questions regarding holistic assessment in palliative care practice and the importance of communication. A holistic assessment tool can support patient assessment and identification of patients' needs in the 'real world' of palliative care practice, but the 'tool' is merely an aid to assist professionals to discuss difficult and sensitive aspects of care. © 2013 John Wiley & Sons Ltd.

The National Tumor Association Foundation (ANT): A 30 year old model of home palliative care

PubMed Central

2010-01-01

Background Models of palliative care delivery develop within a social, cultural, and political context. This paper describes the 30-year history of the National Tumor Association (ANT), a palliative care organization founded in the Italian province of Bologna, focusing on this model of home care for palliative cancer patients and on its evaluation. Methods Data were collected from the 1986-2008 ANT archives and documents from the Emilia-Romagna Region Health Department, Italy. Outcomes of interest were changed in: number of patients served, performance status at admission (Karnofsky Performance Status score [KPS]), length of participation in the program (days of care provided), place of death (home vs. hospital/hospice), and satisfaction with care. Statistical methods included linear and quadratic regressions. A linear and a quadratic regressions were generated; the independent variable was the year, while the dependent one was the number of patients from 1986 to 2008. Two linear regressions were generated for patients died at home and in the hospital, respectively. For each regression, the R square, the unstandardized and standardized coefficients and related P-values were estimated. Results The number of patients served by ANT has increased continuously from 131 (1986) to a cumulative total of 69,336 patients (2008), at a steady rate of approximately 121 additional patients per year and with no significant gender difference. The annual number of home visits increased from 6,357 (1985) to 904,782 (2008). More ANT patients died at home than in hospice or hospital; this proportion increased from 60% (1987) to 80% (2007). The rate of growth in the number of patients dying in hospital/hospice was approximately 40 patients/year (p < 0.01), vs. approximately 177 patients/year for patients who died at home. The percentage of patients with KPS < 40 at admission decreased from 70% (2003) to 30% (2008); the percentage of patients with KPS > 40 increased. Mean days of care for patients with KPS > 40 exceeded mean days for patients with KPS < 40 (p < 0.001). Patients and caregivers reported high satisfaction with care in each year of assessment; in 2008, among 187 interviewed caregivers, 95% judged the quality of doctors' assistance, and 91% judged the quality of nurses' assistance, to be "optimal." Conclusions The ANT home care model of palliative care delivery has been well-received, with progressively growing numbers of patients served. It has resulted in a greater proportion of home deaths and in patients' accessing palliative care at an earlier point in the disease trajectory. Changes in ANT chronicle palliative care trends in general. PMID:20529310

A Call for Integrated and Coordinated Palliative Care

PubMed Central

2017-01-01

Abstract Integrated palliative care is viewed as having the potential to improve service coordination, efficiency, and quality outcomes for patients and family carers. However, the majority of Canadians do not have access to regional, comprehensive, integrated palliative care. Work needs to be directed toward planning palliative care services that is integrated into the healthcare and social care system. To further this goal, it is important to have a conceptual understanding of the meaning of integrated care and its expression in organizational models for the provision of palliative care. PMID:29283874

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

PubMed

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

2016-04-01

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

Opinions of the Dutch public on palliative sedation: a mixed-methods approach

PubMed Central

van der Kallen, Hilde TH; Raijmakers, Natasja JH; Rietjens, Judith AC; van der Male, Alex A; Bueving, Herman J; van Delden, Johannes JM; van der Heide, Agnes

2013-01-01

Background Palliative sedation is defined as deliberately lowering a patient’s consciousness, to relieve intolerable suffering from refractory symptoms at the end of life. Palliative sedation is considered a last resort intervention in end-of-life care that should not be confused with euthanasia. Aim To inform healthcare professionals about attitudes of the general public regarding palliative sedation. Design and setting A cross-sectional survey among members of the Dutch general public followed by qualitative interviews. Method One thousand nine hundred and sixty members of the general public completed the questionnaire, which included a vignette describing palliative sedation (response rate 78%); 16 participants were interviewed. Results In total, 22% of the responders indicated knowing the term ‘palliative sedation’. Qualitative data showed a variety of interpretations of the term. Eighty-one per cent of the responders agreed with the provision of sedatives as described in a vignette of a patient with untreatable pain and a life expectancy of <1 week who received sedatives to alleviate his suffering. This percentage was somewhat lower for a patient with a life expectancy of <1 month (74%, P = 0.007) and comparable in the case where the physician gave sedatives with the aim of ending the patient’s life (79%, P = 0.54). Conclusion Most of the general public accept the use of palliative sedation at the end of life, regardless of a potential life-shortening effect. However, confusion exists about what palliative sedation represents. This should be taken into account by healthcare professionals when communicating with patients and their relatives on end-of-life care options. PMID:24152482

What is a 'secure base' when death is approaching? A study applying attachment theory to adult patients' and family members' experiences of palliative home care.

PubMed

Milberg, A; Wåhlberg, R; Jakobsson, M; Olsson, E-C; Olsson, M; Friedrichsen, M

2012-08-01

Attachment theory has received much interest lately in relation to how adults cope with stress and severe illness. The aim of this study was using the experiences of patients and family members to explore palliative home care as a 'secure base' (a central concept within the theory). Twelve patients and 14 family members were interviewed during ongoing palliative home care. The interviews were analysed with deductive qualitative content analysis. Informants expressed the relevance of sensing security during palliative home care because death and dying were threats that contributed to vulnerability. Palliative home care could foster a feeling of security and provide a secure base. This was facilitated when informants had trust in staff (e.g. due to availability and competence in providing symptom relief), felt recognised as individuals and welcomed to contact the team in times of needs. Being comfortable, informed and having an everyday life also contributed to a perception of palliative home care as a secure base. Family members stressed the importance of being relieved from responsibilities that were too heavy. The underlying meanings of experiencing palliative home care as a secure base involved gaining a sense of control and of inner peace, perceiving that despite a demanding and changed life situation, one could continue partially being oneself and having something to hope for, even if this no longer concerned cure for the ill person. Important aspects of palliative home care as providing a secure base were identified and these have implications for clinical practice. Copyright © 2011 John Wiley & Sons, Ltd.

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.

Prevalence of systemic anticancer therapy for patients within the last 30 days of life: experience in a private hospital oncology group.

PubMed

Wein, L; Rowe, C; Brady, B; Handolias, D; Lipton, L; Pook, D; Stanley, R; Haines, I

2017-03-01

In recent years, there has been a significant increase in the number of cancer treatments that have become available. However, it has remained difficult to choose the most appropriate time to cease active therapy in individual patients. To determine the proportion of patients being treated with palliative intent who received systemic anticancer treatment in the last 30 days of life. This is a retrospective cohort study conducted within the Melbourne Oncology Group at Cabrini Hospital. Patients managed with palliative intent who died between 1 January 2014 and 30 June 2014 were included. Outcomes measured were the percentage of patients who received systemic anticancer treatment in the last 30 days of life, palliative care referral status, Emergency Department presentations, hospital admissions and place of death. A total of 80 patients was included in the study. Of these patients, 21 (26%) received systemic anticancer treatment in the last 30 days of life. There was no statistically significant difference between patients who received treatment in the last month of life and those who did not in terms of the number of patients who were referred to palliative care, presented to an Emergency Department, were admitted to hospital or died in an acute ward. Although over a quarter of patients dying from advanced cancer received anticancer treatment in the last month of life, these patients did not present acutely to hospital more often and had the same extent of palliative care team involvement. © 2016 Royal Australasian College of Physicians.

Sharing is Caring: Minimizing the Disruption with Palliative Care.

PubMed

Abu Dabrh, Abd Moain; Shannon, Robert P; Presutti, Richard J

2018-03-13

There is an upward trend incidence of multiple chronic life-limiting conditions with a well-documented associated impact on patients and their caregivers. When patients approach the end of life, they are often faced with a challenging multidimensional burden while navigating a complex health care system. Patients and families/caregivers are faced with daily decisions, often with little or no frame of reference or medical knowledge. The "what, how, when, and where" puzzle during this challenging time can be overwhelming for patients and their families, and when clinicians do not contemplate this associated workload's impact on patients and caregivers' capacity for self-care, patients and caregivers scramble to find compensatory solutions, often putting their health care at lower priority. This consequently warrants the underlying importance of palliative care and integrating it into the patients' health care plans earlier. There is increasing evidence from recent trials that supported implementing national policies regarding the early integration of palliative care and its role in improving the quality of life, increasing survival, and supporting patients' and caregivers' values when making decisions about their health care while possibly minimizing the burden of illness. The mission of palliative care is to assess, anticipate, and alleviate the challenges and suffering for patients and their caregivers by providing well-constructed approaches to disease-related physical treatments as well as psychological, financial, and spiritual aspects. Communication among all participants (the patient, family/caregivers, and all involved health care professionals) ought to be timely, thorough, and patient-centric. Palliative medicine arguably represents an example of shared decision-making (SDM)-facilitating a patient-centered, informed decision-making through an empathic conversation that is supported by clinicians' expertise and the best available evidence that takes patients values and preferences into consideration. Palliative care teams often consider the burden placed on patients and their caregivers, thus treatment plans would be assessed and introduced into the patients' lives with reflection on the related workload and the potential capacity to take on those plans. Such an approach to pause-and-examine, understand-and-discuss, and assess-and-alleviate might provide a possible example of a health care system that is minimally disruptive to patients and their families. This is an opportunity to replace the information-filled encounter with a more constructive engagement and empowerment to all major stakeholders to participate-an axiom integral to palliative care. Using the best available evidence in caring for patients while enacting SDM, palliative care, primary care, and other subspecialty clinicians need to consider the significant workload and burden that comes with health care and thus explore pathways to minimize the disruption in patients and caregivers' lives. As we collaborate to end cancer and all other mobdeities, we a need a concurrent movement to transform this disease-centered, payer-driven health care era to a rather patient-entered, thoughtful, and minimally disruptive one will benefit patients and physicians alike.

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 writing about these experiences. Students reported finding this model useful in widening their skill-set and understanding of palliative care.

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.

Palliative care in advanced dementia.

PubMed

Merel, Susan E; Merel, Susan; DeMers, Shaune; Vig, Elizabeth

2014-08-01

Because neurodegenerative dementias are progressive and ultimately fatal, a palliative approach focusing on comfort, quality of life, and family support can have benefits for patients, families, and the health system. Elements of a palliative approach include discussion of prognosis and goals of care, completion of advance directives, and a thoughtful approach to common complications of advanced dementia. Physicians caring for patients with dementia should formulate a plan for end-of-life care in partnership with patients, families, and caregivers, and be prepared to manage common symptoms at the end of life in dementia, including pain and delirium. Copyright © 2014 Elsevier Inc. All rights reserved.

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.

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.

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

High-risk single ventricle palliation in children with Down syndrome: single institution experience.

PubMed

Ooi, Yinn K; Sinha, Pranava; Gierdalski, Marcin; Harahsheh, Ashraf

2015-03-01

Of the children with Down syndrome 40-50% have cardiac defects and the majority of these cardiac defects are amenable to biventricular repair. The outcome of single ventricle palliation is improving; nonetheless, there are limited data on Down syndrome patients with associated high-risk factors undergoing single ventricle palliation. Our aim was to study the outcomes of children with Down syndrome and high-risk factors on the single ventricle palliation pathway. A retrospective study on all patients with Down syndrome on the single ventricle palliation pathway from 2005 until 2011 was conducted. Operative, clinical, echocardiographic, haemodynamic data, and follow-up data were reviewed. A total of 310 patients underwent at least one single ventricle surgical intervention. Of those, eight patients had Down syndrome, five of which had associated risk factors - low birth weight, high pulmonary vascular resistance, pulmonary vein stenosis, significant atrioventricular valve regurgitation, and extracardiac anomalies. Mortality in the high-risk group was 80% (4/5), compared with 33% (1/3) in the non-high-risk patients. Overall, after a median follow-up period of 138 days (8-576 days), only 37.5% (3/8) of patients were alive. Despite many improvements in the care of single ventricle patients, the fate of those with Down syndrome and associated high-risk factors remains poor. Further multicentre longer-term studies are needed to validate and quantify the cumulative effects of negative prognostic factors in this complex group of patients.

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.

Two steps forward, one step back: changes in palliative care consultation services in California hospitals from 2007 to 2011.

PubMed

Pantilat, Steven Z; O'Riordan, David L; Bruno, Kelly A

2014-11-01

The number of palliative care consultation services is growing, yet little is known about how program characteristics change over time. Compare changes in the characteristics of palliative care programs and palliative care consultation services in 2007 and 2011. We surveyed all hospitals in California in 2011 and compared palliative care program and palliative care consultation service characteristics with survey results from 2007. There were 41 new palliative care programs since 2007; 17 programs closed between 2007 and 2011. Hospital characteristics associated with the closure of a palliative care program included a hospital size of 1-149 beds versus 150 or more (p=0.03), for-profit status (p=0.001), and having no system affiliation (p=0.0001). The prevalence of palliative care consultation services was 33% in 2007 and 37% in 2011 (p=0.3). At both time periods nearly all palliative care consultation services (98%) were available onsite during weekday business hours and only half were available at other times (p=0.4). There was an increase (p=0.002) in nurse/physician full-time equivalent (FTE; 2007, mean=1.5; 95% confidence interval [CI]=1.3-1.7; 2011, mean=1.9; 95% CI=1.6-2.2) but fewer teams reported having social workers (58% versus 80%, p=0.002) and chaplains (58% versus 77%, p=0.0001) in 2011. Over half of the palliative care consultation services reported seeing less than 50% of patients who would benefit from a consultation (2007: 59%, 2011=50%, p=0.2), yet most also reported struggling to cope with patient volume (2007: 62%; 2011: 66%, p=0.5). Fewer than half of hospitals in California offer a palliative care program and many close over time. Making palliative care consultation services a condition of participation by insurers could make hospital palliative care consultation services universal. Mechanisms need to be established to improve staffing levels, maintain the interdisciplinary nature of palliative care consultation services, and accommodate demand for services.

A Systematic Review of Palliative Care Intervention Outcomes and Outcome Measures in Low-Resource Countries.

PubMed

Potts, Maryellen; Cartmell, Kathleen B; Nemeth, Lynne; Bhattacharjee, Gautam; Qanungo, Suparna

2018-05-01

To meet the growing need for palliative care in low-resource countries, palliative care programs should be evidence based and contextually appropriate. This study was conducted to synthesize the current evidence to guide future programmatic and research efforts. This systematic review evaluated palliative care outcome measures, outcomes, and interventions in low-resource countries. After title searches, abstracts and full-text articles were screened for inclusion. Data were extracted to report on intervention models, outcome measures used, and intervention outcomes. Eighteen papers were reviewed, reporting on interventions conducted across nine low-resource countries. These interventions evaluated home-based palliative care models; a community-managed model; palliative care integrated with hospitals, hospices, or HIV clinics; and models focused on patients' self-management. Three studies were randomized controlled trials. Other studies used nonrandomized trials, cohort studies, mixed methods, pre-post test evaluation, cost-accounting evaluation, and cross-sectional surveys. Thirteen studies measured physical outcomes, 10 using multidimensional instruments. Nine studies measured psychological outcomes, eight using multidimensional instruments. Nine studies measured social outcomes, seven using multidimensional instruments. Nine studies measured outcomes across multiple domains. Across outcomes evaluated, results were reported in the direction of benefit associated with palliative care interventions. Many palliative care intervention models exist to serve patients in low-resource countries. Yet, limited high-quality evidence from low-resource countries is available to document intervention outcomes. Rigorous experimental studies and greater measurement of multidimensional aspects of palliative care are needed to advance the science of palliative care in low-resource settings. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Communication in palliative care: the applicability of the SAGE and THYME model in Singapore.

PubMed

Martin, Ang Seng Hock; Costello, John; Griffiths, Jane

2017-06-02

Majority of the progress and development in palliative care in the last decade has been improvements in physical aspects of treatment, namely pain and symptom management. Psychosocial aspects of care have improved, although not enough to meet the needs of many patients and family members. This is evident in many parts of the world and notably in Singapore, where palliative care is seen as an emerging medical and nursing specialty. To discuss the implementation of the SAGE and THYME communication model in a palliative care context. The article examines the use of the model and how its implementation can improve communication between patients and nurses. The model works by reviewing contemporary developments made in relation to improving communication in palliative care. These include, highlighting the importance of meeting individual needs, therapeutic relationship building, and advanced communication training within a Singaporean context. The implementation of the SAGE and THYME model can be a useful way of enabling nurses to improve and maintain effective communication in a medically dominated health care system. The challenges and constraints in educating and training nurses with limited skills in palliative care, forms part of the review, including the cultural and attitude constraints specific to Singaporean palliative care.

An exploration of the word 'palliative' in the 19th century: searching the BMJ archives for clues.

PubMed

Taubert, Mark; Fielding, Helen; Mathews, Emma; Frazer, Ricky

2013-03-01

Palliative care went through a significant evolution in the 20th century, but the 19th century has been seen my some scholars as the real turning point toward the more modern concept of hospices and palliative care. To investigate some examples of earlier uses of the word 'palliative', a literature search was conducted within the earliest available BMJ archive sections, the years 1840 to 1842. This provided a glimpse into how the word was used in the medical literature in Victorian times, mid-nineteenth century. Search results brought up a number of case reports, and the word was employed to describe medicines ('use of palliatives') as well as passive, non-active treatment approaches, probably best described as a watch-and-wait strategy. Of note is that the first recorded use of the word in the archives is by a surgeon. Some doctors associated the word palliative with there not being any prospect for cure and only for the relief of symptoms and greater comfort of the patient. There were, however, early reflections on whether palliative treatments may in some cases increase the length of patients' lives.

A painful experience of limited understanding: healthcare professionals' experiences with palliative care of people with severe dementia in Norwegian nursing homes.

PubMed

Midtbust, May Helen; Alnes, Rigmor Einang; Gjengedal, Eva; Lykkeslet, Else

2018-02-13

People dying with dementia have significant healthcare needs, and palliative care, with its focus on comfort and quality of life, should be made available to these patients. The aim of this study was to explore and increase knowledge of healthcare professionals' experiences with palliative care to people with severe dementia in nursing homes. To describe the phenomenon under investigation, we used a phenomenological research approach grounded in the philosophy of Husserl. Data were collected using in-depth interviews with 20 healthcare professionals from four Norwegian nursing homes. The general meaning structure of the healthcare professionals' experiences with providing palliative care to people with severe dementia is painfulness, due to their limited understanding of patients' individual modes of expression. The painfulness is illustrated by the following themes: challenges related to "reading" the patients' suffering, coming up short despite occasional success, handing the patients over to strangers, and disagreeing on the patients' best interests. The healthcare professionals struggled to understand patients by "reading" their suffering. Occasionally, they succeeded and were able to calm the patients, but they often had the feeling of coming up short in situations related to pain relief and coping with behavioural symptoms, such as aggression and rejection of care. They also found it painful when the weakest patients were moved from the sheltered unit to a somatic long-term unit and were handed over to strangers who did not know the patients' ways of expression. Although the healthcare professionals emphasized the importance of good collaboration with the patients' relatives to ensure the best possible palliative care, they frequently found themselves in difficult situations when they disagreed with the family on the patients' best interests. We found healthcare professionals' experiences of providing palliative care to people with severe dementia to be painful. To be able to understand the patients better, long-term familiarity and knowledge of how to "read" and observe patients with severe dementia are necessary. Openness in cooperation with the patients' relatives and with the professional team may increase healthcare professionals' understanding of the patients' situations and hence improve the quality of care.

Cancer rehabilitation and palliative care: critical components in the delivery of high-quality oncology services.

PubMed

Silver, Julie K; Raj, Vishwa S; Fu, Jack B; Wisotzky, Eric M; Smith, Sean Robinson; Kirch, Rebecca A

2015-12-01

Palliative care and rehabilitation practitioners are important collaborative referral sources for each other who can work together to improve the lives of cancer patients, survivors, and caregivers by improving both quality of care and quality of life. Cancer rehabilitation and palliative care involve the delivery of important but underutilized medical services to oncology patients by interdisciplinary teams. These subspecialties are similar in many respects, including their focus on improving cancer-related symptoms or cancer treatment-related side effects, improving health-related quality of life, lessening caregiver burden, and valuing patient-centered care and shared decision-making. They also aim to improve healthcare efficiencies and minimize costs by means such as reducing hospital lengths of stay and unanticipated readmissions. Although their goals are often aligned, different specialized skills and approaches are used in the delivery of care. For example, while each specialty prioritizes goal-concordant care through identification of patient and family preferences and values, palliative care teams typically focus extensively on using patient and family communication to determine their goals of care, while also tending to comfort issues such as symptom management and spiritual concerns. Rehabilitation clinicians may tend to focus more specifically on functional issues such as identifying and treating deficits in physical, psychological, or cognitive impairments and any resulting disability and negative impact on quality of life. Additionally, although palliative care and rehabilitation practitioners are trained to diagnose and treat medically complex patients, rehabilitation clinicians also treat many patients with a single impairment and a low symptom burden. In these cases, the goal is often cure of the underlying neurologic or musculoskeletal condition. This report defines and describes cancer rehabilitation and palliative care, delineates their respective roles in comprehensive oncology care, and highlights how these services can contribute complementary components of essential quality care. An understanding of how cancer rehabilitation and palliative care are aligned in goal setting, but distinct in approach may help facilitate earlier integration of both into the oncology care continuum-supporting efforts to improve physical, psychological, cognitive, functional, and quality of life outcomes in patients and survivors.

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…

[Hospice and palliative care in the outpatient department].

PubMed

Ikenaga, M; Tsuneto, S

2000-10-01

In the medical environment, information disclosure to patients and respect of autonomy have spread rapidly. Today, many terminally-ill cancer patients wish to spend as much time at home as possible. In such situations the patient who has been informed that curative treatments are no longer expected to be beneficial can now hope to receive home care and visiting care from hospice/palliative care services. The essential concepts of hospice/palliative care are symptom management, communication, family care and a multidisciplinary approach. These concepts are also important in the outpatient department. In particular, medical staff need to understand and utilize management strategies for common symptoms from which terminally-ill cancer patients suffer (ex. cancer pain, anorexia/fatigue, dyspnea, nausea/vomiting, constipation, hypercalcemia and psychological symptoms). They also need to know how to use continuous subcutaneous infusion for symptom management in the patients last few days. The present paper explains the clinical practices of hospice/palliative care in the outpatient department. Also discussed is support of individual lives so that maximum QOL is provided for patients kept at home.

'Death is difficult in any language': A qualitative study of palliative care professionals' experiences when providing end-of-life care to patients from culturally and linguistically diverse backgrounds.

PubMed

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

2018-05-01

Ethnic minority patients have unique challenges in accessing health services. These include language difficulties, unfamiliarity with the health system, lower rates of cancer screening and survival, higher rates of reported side effects from cancer treatment and poorer quality of life. Little is known about this patient group when transitioning to palliative care. To elicit the experiences of palliative care health professionals when providing care for patients from culturally and linguistically diverse backgrounds which differ from mainstream Australian language and culture. An emergent qualitative design, informed by theoretical and procedural direction from grounded theory research. Four focus groups held with palliative care staff ( n = 28) in a single specialist palliative care service in Australia. The following themes emerged: (1) determining the rules of engagement around discussion of diagnosis and prognosis, (2) navigating the challenge of language to patient understanding, (3) understanding migration experiences to establish trust, (4) maintaining the balance between patient safety and comfort care, (5) providing a good death experience through accommodation of beliefs, and (6) navigating the important role of family members while privileging patient preferences. Underlying provider perceptions of caring for patients was that death is difficult in any language. Care was conceptualised as considering cultural and linguistic backgrounds within individualistic care. Understanding the migration experience and building trust were key elements of this individualised approach. Acknowledgement of the key role played by families in patient care and safety are strategies to minimise barriers and understand the concerns of this patient group.

The challenges of uncertainty and interprofessional collaboration in palliative care for non-cancer patients in the community: A systematic review of views from patients, carers and health-care professionals

PubMed Central

Murtagh, Fliss EM

2014-01-01

Background: Primary care has the potential to play significant roles in providing effective palliative care for non-cancer patients. Aim: To identify, critically appraise and synthesise the existing evidence on views on the provision of palliative care for non-cancer patients by primary care providers and reveal any gaps in the evidence. Design: Standard systematic review and narrative synthesis. Data sources: MEDLINE, Embase, CINAHL, PsycINFO, Applied Social Science Abstract and the Cochrane library were searched in 2012. Reference searching, hand searching, expert consultations and grey literature searches complemented these. Papers with the views of patients/carers or professionals on primary palliative care provision to non-cancer patients in the community were included. The amended Hawker’s criteria were used for quality assessment of included studies. Results: A total of 30 studies were included and represent the views of 719 patients, 605 carers and over 400 professionals. In all, 27 studies are from the United Kingdom. Patients and carers expect primary care physicians to provide compassionate care, have appropriate knowledge and play central roles in providing care. The roles of professionals are unclear to patients, carers and professionals themselves. Uncertainty of illness trajectory and lack of collaboration between health-care professionals were identified as barriers to effective care. Conclusions: Effective interprofessional work to deal with uncertainty and maintain coordinated care is needed for better palliative care provision to non-cancer patients in the community. Research into and development of a best model for effective interdisciplinary work are needed. PMID:24821710

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

PubMed

Runacres, Fiona; Gregory, Heidi; Ugalde, Anna

2017-07-01

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

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.

Raising the bar for the care of seriously ill patients: results of a national survey to define essential palliative care competencies for medical students and residents.

PubMed

Schaefer, Kristen G; Chittenden, Eva H; Sullivan, Amy M; Periyakoil, Vyjeyanth S; Morrison, Laura J; Carey, Elise C; Sanchez-Reilly, Sandra; Block, Susan D

2014-07-01

Given the shortage of palliative care specialists in the United States, to ensure quality of care for patients with serious, life-threatening illness, generalist-level palliative care competencies need to be defined and taught. The purpose of this study was to define essential competencies for medical students and internal medicine and family medicine (IM/FM) residents through a national survey of palliative care experts. Proposed competencies were derived from existing hospice and palliative medicine fellowship competencies and revised to be developmentally appropriate for students and residents. In spring 2012, the authors administered a Web-based, national cross-sectional survey of palliative care educational experts to assess ratings and rankings of proposed competencies and competency domains. The authors identified 18 comprehensive palliative care competencies for medical students and IM/FM residents, respectively. Over 95% of survey respondents judged the competencies as comprehensive and developmentally appropriate (survey response rate = 72%, 71/98). Using predefined cutoff criteria, experts identified 7 medical student and 13 IM/FM resident competencies as essential. Communication and pain/symptom management were rated as the most critical domains. This national survey of palliative care experts defines comprehensive and essential palliative care competencies for medical students and IM/FM residents that are specific, measurable, and can be used to report educational outcomes; provide a sequence for palliative care curricula in undergraduate and graduate medical education; and highlight the importance of educating medical trainees in communication and pain management. Next steps include seeking input and endorsement from stakeholders in the broader medical education community.

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.

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.

Assessment of safety and efficacy of an indigenous self-expandable fully covered esophageal metal stent for palliation of esophageal cancer.

PubMed

Padhan, R K; Nongthombam, S K; Venuthurimilli, A; Dhingra, R; Sahni, P; Garg, P K

2016-01-01

Patients with unresectable esophageal cancer require palliation for dysphagia. Placement of a self-expandable metal stent (SEMS) is the procedure of choice for palliation of dysphagia. To evaluate the safety and efficacy of an indigenous fully-covered SEMS in patients with esophageal cancer. Eligible patients with unresectable esophageal cancer requiring palliation for dysphagia were included in the study. An indigenous fully covered SEMS of appropriate length was placed under endoscopic and fluoroscopic guidance. Outcome measures assessed were adverse events and improvement in dysphagia. Twenty one patients (mean age 57.71±13.14 years; 17 males) were included. After stenting, dysphagia score decreased from 3.2+0.4 to 0.35+0.74 at 4 weeks. Adverse events included retrosternal pain, respiratory distress and aspiration pneumonia in 12, 2 and 1 patients respectively. Five patients required repeat stenting due to stent migration in 4 (following radiotherapy in 3) and tumour ingrowth in 1. There was primary stent malfunction in one patient. The median survival of patients was 140 (76-199) days, which was higher in those who received radiotherapy. The stent was reasonably safe and effective to relieve dysphagia due to unresectable esophageal cancer.

Dyspnea Management in Palliative Home Care: A Case Series in Malaysia

PubMed Central

Thongkhamcharoen, Rojanasak; Breaden, Katrina; Agar, Meera; Hamzah, Ednin

2012-01-01

Managing dyspnea at home is a challenging task. Although a competent palliative home care team can assist a patient to live at home with better pain control, dyspnea is usually not as well managed. In the Asian context, there are few research studies in dyspnea management in palliative home care. This paper aims to illustrate the cultural context that has an impact on dyspnea management at home and the assessment and management of dyspnea in a community palliative care setting in Malaysia. This paper reports on a study of 5 dyspneic patients suffering from both cancer-related and non–cancer-related dyspnea. Its focus is on a unique Asian cultural belief system that affects communication about prognosis and the role of family in palliative home care. In addition, this paper also describes dyspnea assessment, the barriers to morphine use, benzodiazepine prescription, oxygen therapy, and nonpharmacologic intervention in this center. PMID:23093829

[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 in India: successes and limitations.

PubMed

Rajagopal, M R; Venkateswaran, Chitra

2003-01-01

Palliative care in India is in a relatively early stage of development and consequently faces numerous problems. The extent of problems relating to the lack of such care is not well described for cancer or nonmalignant diseases. Opioid availability is seriously limited. Many inexpensive drugs are not readily available and some very expensive drugs are often prescribed, adding to the patients' burden. Enormous psychosocial needs often are neglected in busy clinics. The government's palliative care policy has not been implemented. There are clear needs for improvement in multiple areas that must be addressed as new services develop. A system based on outpatient care has proven cost-effective, empowering families to care for patients at home. Whenever possible, inpatient facility and home visits should be available for those who need them. Some measures of quality assurance should develop concurrent with growth of the palliative care movement. Successes and problems in the development of palliative care in India are discussed.

[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.

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

PubMed Central

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

2015-01-01

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

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 participate and to improve their lifestyle behaviors.

Hospice and palliative social workers' experiences with clients at risk of suicide.

PubMed

Washington, Karla T; Albright, David L; Parker Oliver, Debra; Gage, L Ashley; Lewis, Alexandria; Mooney, Megan J

2016-12-01

We sought to determine the frequency with which hospice and palliative social workers encounter patients, family caregivers, and other clients at risk of suicide, and to discover the extent to which hospice and palliative social workers feel prepared to address issues related to suicide in their professional practice. We conducted a cross-sectional survey of hospice and palliative social workers, recruiting a convenience sample of volunteer respondents through advertisements at professional conferences and listservs, and via social media accounts associated with national organizations, state hospice and palliative care associations, and individual healthcare professionals. Most respondents reported having worked with patients, family caregivers, or other clients who had exhibited warning signs of suicide during the previous year. Fewer respondents indicated that they had worked with patients and family members who had attempted or died by suicide. While the majority of respondents believed they possessed sufficient knowledge and skills to intervene effectively with individuals at risk of suicide, they indicated that additional education on this topic would be valuable for their professional practice. These study results suggest that suicide-related competencies are important in the practice of hospice and palliative social work. Future education and training efforts should include skill development in addition to knowledge building.

Qualitative Research in Palliative Care: Applications to Clinical Trials Work.

PubMed

Lim, Christopher T; Tadmor, Avia; Fujisawa, Daisuke; MacDonald, James J; Gallagher, Emily R; Eusebio, Justin; Jackson, Vicki A; Temel, Jennifer S; Greer, Joseph A; Hagan, Teresa; Park, Elyse R

2017-08-01

While vast opportunities for using qualitative methods exist within palliative care research, few studies provide practical advice for researchers and clinicians as a roadmap to identify and utilize such opportunities. To provide palliative care clinicians and researchers descriptions of qualitative methodology applied to innovative research questions relative to palliative care research and define basic concepts in qualitative research. Body: We describe three qualitative projects as exemplars to describe major concepts in qualitative analysis of early palliative care: (1) a descriptive analysis of clinician documentation in the electronic health record, (2) a thematic content analysis of palliative care clinician focus groups, and (3) a framework analysis of audio-recorded encounters between patients and clinicians as part of a clinical trial. This study provides a foundation for undertaking qualitative research within palliative care and serves as a framework for use by other palliative care researchers interested in qualitative methodologies.

Provision of Palliative Care Services by Family Physicians Is Common.

PubMed

Ankuda, Claire K; Jetty, Anuradha; Bazemore, Andrew; Petterson, Stephen

2017-01-01

Provision of palliative care services by primary care physicians is increasingly important with an aging population, but it is unknown whether US primary care physicians see themselves as palliative practitioners. This study used cross-sectional analysis of data from the 2013 American Board of Family Medicine Maintenance of Certification Demographic Survey. Of 10,894 family physicians, 33.1% (n = 3609) report providing palliative care. Those providing palliative care are significantly more likely to provide non-clinic-based services such as care in nursing homes, home visits, and hospice. Controlling for other characteristics, physicians reporting palliative care provision are significantly ( P < .05) more likely to be older, white, male, rural, and practicing in a patient-centered medical home. One third of family physicians recertifying in 2013 reported providing palliative care, with physician and practice characteristics driving reporting palliative care provision. © Copyright 2017 by the American Board of Family Medicine.

Factors supporting good partnership working between generalist and specialist palliative care services: a systematic review.

PubMed

Gardiner, Clare; Gott, Merryn; Ingleton, Christine

2012-05-01

The care that most people receive at the end of their lives is provided not by specialist palliative care professionals but by generalists such as GPs, district nurses and others who have not undertaken specialist training in palliative care. A key focus of recent UK policy is improving partnership working across the spectrum of palliative care provision. However there is little evidence to suggest factors which support collaborative working between specialist and generalist palliative care providers. To explore factors that support partnership working between specialist and generalist palliative care providers. Systematic review. A systematic review of studies relating to partnership working between specialist and generalist palliative care providers was undertaken. Six electronic databases were searched for papers published up until January 2011. Of the 159 articles initially identified, 22 papers met the criteria for inclusion. Factors supporting good partnership working included: good communication between providers; clear definition of roles and responsibilities; opportunities for shared learning and education; appropriate and timely access to specialist palliative care services; and coordinated care. Multiple examples exist of good partnership working between specialist and generalist providers; however, there is little consistency regarding how models of collaborative working are developed, and which models are most effective. Little is known about the direct impact of collaborative working on patient outcomes. Further research is required to gain the direct perspectives of health professionals and patients regarding collaborative working in palliative care, and to develop appropriate and cost-effective models for partnership working.

Blood transfusion practice in the UK and Ireland: a survey of palliative care physicians.

PubMed

Neoh, Karen; Stanworth, Simon; Bennett, Michael I

2018-03-23

Red cell (blood) transfusions are used in palliative care to manage patients with symptomatic anaemia or when patients have lost blood. We aimed to understand current blood transfusion practice among palliative medicine doctors and compare this with National Institute for Health and Care Excellence (NICE) guidance. NICE guidance advocates more restrictive transfusion practice but is based on clinical trials in non-palliative care contexts; the extent to which these findings should be applied to palliative care remains unclear. Four clinical vignettes of common clinical palliative care scenarios were developed. Members of the Association for Palliative Medicine were invited to complete the survey. Results were compared with acceptable responses based on current NICE recommendations and analysed to determine the influence of respondents' gender, experience or work setting. 27% of 1070 members responded. Overall, ideal or acceptable responses were selected by less than half of doctors to all four vignettes. Doctors were more liberal in prescribing blood transfusions than NICE guidance would advocate. Senior doctors were less likely to choose an acceptable response than junior colleagues. Palliative care practice is varied and not consistent with a restrictive blood transfusion policy. More recently trained doctors follow less liberal practices than senior colleagues. More direct evidence of benefits and harms of blood transfusion is needed in palliative care to inform practice. © 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.

Threading the cloak: palliative care education for care providers of adolescents and young adults with cancer

PubMed Central

Wiener, Lori; Weaver, Meaghann Shaw; Bell, Cynthia J; Sansom-Daly, Ursula M

2015-01-01

Medical providers are trained to investigate, diagnose, and treat cancer. Their primary goal is to maximize the chances of curing the patient, with less training provided on palliative care concepts and the unique developmental needs inherent in this population. Early, systematic integration of palliative care into standard oncology practice represents a valuable, imperative approach to improving the overall cancer experience for adolescents and young adults (AYAs). The importance of competent, confident, and compassionate providers for AYAs warrants the development of effective educational strategies for teaching AYA palliative care. Just as palliative care should be integrated early in the disease trajectory of AYA patients, palliative care training should be integrated early in professional development of trainees. As the AYA age spectrum represents sequential transitions through developmental stages, trainees experience changes in their learning needs during their progression through sequential phases of training. This article reviews unique epidemiologic, developmental, and psychosocial factors that make the provision of palliative care especially challenging in AYAs. A conceptual framework is provided for AYA palliative care education. Critical instructional strategies including experiential learning, group didactic opportunity, shared learning among care disciplines, bereaved family members as educators, and online learning are reviewed. Educational issues for provider training are addressed from the perspective of the trainer, trainee, and AYA. Goals and objectives for an AYA palliative care cancer rotation are presented. Guidance is also provided on ways to support an AYA's quality of life as end of life nears. PMID:25750863

Culture and Palliative Care: Preferences, Communication, Meaning, and Mutual Decision Making.

PubMed

Cain, Cindy L; Surbone, Antonella; Elk, Ronit; Kagawa-Singer, Marjorie

2018-05-01

Palliative care is gaining acceptance across the world. However, even when palliative care resources exist, both the delivery and distribution of services too often are neither equitably nor acceptably provided to diverse population groups. The goal of this study was to illustrate tensions in the delivery of palliative care for diverse patient populations to help clinicians to improve care for all. We begin by defining and differentiating culture, race, and ethnicity, so that these terms-often used interchangeably-are not conflated and are more effectively used in caring for diverse populations. We then present examples from an integrative literature review of recent research on culture and palliative care to illustrate both how and why varied responses to pain and suffering occur in different patterns, focusing on four areas of palliative care: the formation of care preferences, communication patterns, different meanings of suffering, and decision-making processes about care. For each area, we provide international and multiethnic examples of variations that emphasize the need for personalization of care and the avoidance of stereotyping beliefs and practices without considering individual circumstances and life histories. We conclude with recommendations for improving palliative care research and practice with cultural perspectives, emphasizing the need to work in partnerships with patients, their family members, and communities to identify and negotiate culturally meaningful care, promote quality of life, and ensure the highest quality palliative care for all, both domestically and internationally. Copyright © 2018 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

[Secondary traumatization/trauma among employees in palliative care units--the products of prolonged repeated exposure to suffering and death].

PubMed

Samson, Tali; Shvartzman, Pesach

2012-11-01

The palliative care philosophy accepts the dying process as a natural phase in the life cycle and provides quality end of life care for terminal patients and their family members. Prolonged exposure to the physical symptoms and pain, as well as the psychological, spiritual, and existential suffering of the dying patient, may be fertile ground for the development of post-traumatic stress symptoms among palliative care teams. Work-related positive outcomes (such as compassion, satisfaction and meaning) and work-related negative outcomes (such as compassion fatigue, secondary traumatization and burnout) can exist side by side, and the unique balance between them will determine the quality of life of the worker. This review presents the current knowledge about the prevalence and causes of work-related stress outcomes among palliative care teams and measurement tools that are available. The literature review discusses secondary traumatization in palliative care teams and relevant messages for the development of treatment options, burnout prevention programs and support interventions for professionals who lead the care for terminal patients in Israel.

An exploration of self-management support in the context of palliative nursing: a modified concept analysis

PubMed Central

2014-01-01

Background The role of self-management is often ambiguous, yet, it is an important area in clinical practice for palliative nurses. A clear conceptual understanding, however, of what it represents is lacking. Method This paper reports an analysis of the concept of self-management support in palliative nursing. Avant and Walker’s method was used to guide this concept analysis. A search of electronic databases (1990–2013), use of internet search engines and supplementary hand searching produced an international data set of reviews, empirical research, editorials, protocols and guidelines. Results Based on the analysis self-management support in palliative nursing has been defined as assessing, planning, and implementing appropriate care to enable the patient to live until they die and supporting the patient to be given the means to master or deal with their illness or their effects of their illness themselves. Conclusions Clarity with the concept of self-management support and palliative nursing could enable nurses to provide more patient and family centred care to people facing life threatening illnesses. PMID:25120381

Palliative care in the home: a scoping review of study quality, primary outcomes, and thematic component analysis.

PubMed

Hofmeister, Mark; Memedovich, Ally; Dowsett, Laura E; Sevick, Laura; McCarron, Tamara; Spackman, Eldon; Stafinski, Tania; Menon, Devidas; Noseworthy, Tom; Clement, Fiona

2018-03-07

The aim of palliative care is to improve the quality of life of patients and families through the prevention and relief of suffering. Frequently, patients may choose to receive palliative care in the home. The objective of this paper is to summarize the quality and primary outcomes measured within the palliative care in the home literature. This will synthesize the current state of the literature and inform future work. A scoping review was completed using PRISMA guidelines. PubMed, Embase, CINAHL, Web of Science, Cochrane Library, EconLit, PsycINFO, Centre for Reviews and Dissemination, Database of Abstracts of Reviews of Effects, and National Health Service Economic Evaluation Database were searched from inception to August 2016. Inclusion criteria included: 1) care was provided in the "home of the patient" as defined by the study, 2) outcomes were reported, and 3) reported original data. Thematic component analysis was completed to categorize interventions. Fifty-three studies formed the final data set. The literature varied extensively. Five themes were identified: accessibility of healthcare, caregiver support, individualized patient centered care, multidisciplinary care provision, and quality improvement. Primary outcomes were resource use, symptom burden, quality of life, satisfaction, caregiver distress, place of death, cost analysis, or described experiences. The majority of studies were of moderate or unclear quality. There is robust literature of varying quality, assessing different components of palliative care in the home interventions, and measuring different outcomes. To be meaningful to patients, these interventions need to be consistently evaluated with outcomes that matter to patients. Future research could focus on reaching a consensus for outcomes to evaluate palliative care in the home interventions.

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.

An official American Thoracic Society workshop report: assessment and palliative management of dyspnea crisis.

PubMed

Mularski, Richard A; Reinke, Lynn F; Carrieri-Kohlman, Virginia; Fischer, Mark D; Campbell, Margaret L; Rocker, Graeme; Schneidman, Ann; Jacobs, Susan S; Arnold, Robert; Benditt, Joshua O; Booth, Sara; Byock, Ira; Chan, Garrett K; Curtis, J Randall; Donesky, Doranne; Hansen-Flaschen, John; Heffner, John; Klein, Russell; Limberg, Trina M; Manning, Harold L; Morrison, R Sean; Ries, Andrew L; Schmidt, Gregory A; Selecky, Paul A; Truog, Robert D; Wang, Angela C C; White, Douglas B

2013-10-01

In 2009, the American Thoracic Society (ATS) funded an assembly project, Palliative Management of Dyspnea Crisis, to focus on identification, management, and optimal resource utilization for effective palliation of acute episodes of dyspnea. We conducted a comprehensive search of the medical literature and evaluated available evidence from systematic evidence-based reviews (SEBRs) using a modified AMSTAR approach and then summarized the palliative management knowledge base for participants to use in discourse at a 2009 ATS workshop. We used an informal consensus process to develop a working definition of this novel entity and established an Ad Hoc Committee on Palliative Management of Dyspnea Crisis to further develop an official ATS document on the topic. The Ad Hoc Committee members defined dyspnea crisis as "sustained and severe resting breathing discomfort that occurs in patients with advanced, often life-limiting illness and overwhelms the patient and caregivers' ability to achieve symptom relief." Dyspnea crisis can occur suddenly and is characteristically without a reversible etiology. The workshop participants focused on dyspnea crisis management for patients in whom the goals of care are focused on palliation and for whom endotracheal intubation and mechanical ventilation are not consistent with articulated preferences. However, approaches to dyspnea crisis may also be appropriate for patients electing life-sustaining treatment. The Ad Hoc Committee developed a Workshop Report concerning assessment of dyspnea crisis; ethical and professional considerations; efficient utilization, communication, and care coordination; clinical management of dyspnea crisis; development of patient education and provider aid products; and enhancing implementation with audit and quality improvement.

Using Experience-based Co-design with older patients, their families and staff to improve palliative care experiences in the Emergency Department: A reflective critique on the process and outcomes.

PubMed

Blackwell, Rebecca Wright Née; Lowton, Karen; Robert, Glenn; Grudzen, Corita; Grocott, Patricia

2017-03-01

Increasing use of emergency departments among older patients with palliative needs has led to the development of several service-level interventions intended to improve care quality. There is little evidence of patient and family involvement in developmental processes, and little is known about the experiences of - and preferences for - palliative care delivery in this setting. Participatory action research seeking to enable collaborative working between patients and staff should enhance the impact of local quality improvement work but has not been widely implemented in such a complex setting. To critique the feasibility of this methodology as a quality improvement intervention in complex healthcare settings, laying a foundation for future work. an Emergency Department in a large teaching hospital in the United Kingdom. Experience-based Co-design incorporating: 150h of nonparticipant observation; semi-structured interviews with 15 staff members about their experiences of palliative care delivery; 5 focus groups with 64 staff members to explore challenges in delivering palliative care; 10 filmed semi-structured interviews with palliative care patients or their family members; a co-design event involving staff, patients and family members. the study successfully identified quality improvement priorities leading to changes in Emergency Department-palliative care processes. Further outputs were the creation of a patient-family-staff experience training DVD to encourage reflective discussion and the identification and application of generic design principles for improving palliative care in the Emergency Department. There were benefits and challenges associated with using Experience-based Co-design in this setting. Benefits included the flexibility of the approach, the high levels of engagement and responsiveness of patients, families and staff, and the impact of using filmed narrative interviews to enhance the 'voice' of seldom heard patients and families. Challenges included high levels of staff turnover during the 19 month project, significant time constraints in the Emergency Department and the ability of older patients and their families to fully participate in the co-design process. Experience-based Co-design is a useful approach for encouraging collaborative working between vulnerable patients, family and staff in complex healthcare environments. The flexibility of the approach allows the specific needs of participants to be accounted for, enabling fuller engagement with those who typically may not be invited to contribute to quality improvement work. Recommendations for future studies in this and similar settings include testing the 'accelerated' form of the approach and experimenting with alternative ways of increasing involvement of patients/families in the co-design phase. Copyright © 2017 Elsevier Ltd. All rights reserved.

Effectiveness of "palliative care information booklet" in enhancing nurses' knowledge.

PubMed

David, Anita; Banerjee, Sonali

2010-09-01

Patients diagnosed with a disease like cancer require not only physical control of disease but also they need psychological reassurance, social and spiritual support in coming to terms with their disease. Nurses working in the specialized cancer hospitals play a significant role in the care of terminally ill patients. They must be knowledgeable, skilled and sensitive to the needs of these patients and their families in order to provide active, holistic care. In this study, we attempted to assess the level of knowledge about palliative care among nurses working in the oncology department using a self administered structured questionnaire and also to assess the effectiveness of information booklet designed on various aspects of palliative care on their knowledge. Indo American Cancer Hospital, Hyderabad, AP, India. The design adopted for this study was One Group pretest - posttest, pre - experimental design. Hundred nurses working in Indo American Cancer Hospital, Hyderabad, AP, India were selected by using the non probability purposive sampling technique. A structured self administered questionnaire was prepared and administered as a pretest. An information booklet was developed pertaining to the general concepts of palliative care, care components (physical, social, emotional and spiritual) and role of the nurse in palliative care and it was given to the participants. As a post test, the same questionnaire was re-administered after four days to the same study subjects. Pretest and post test knowledge scores were compared and the findings were analyzed statistically. Microsoft Excel and Statistical Package for Social Science package. The post test scores were significantly higher than the pretest knowledge scores, which indicate that the developed information booklet regarding palliative care was highly effective in enhancing the knowledge levels of the nurses. The information booklet was effective in enriching the knowledge of nurses on palliative care. Enhancing the nurse's knowledge about palliative care will promote their understanding of the needs of the advanced stage patients and will enable them to provide quality care.

The role and significance of nurses in managing transitions to palliative care: a qualitative study

PubMed Central

Kirby, Emma; Broom, Alex; Good, Phillip

2014-01-01

Objectives Nurses are generally present, and often influential, in supporting patient and family acceptance of medical futility and in assisting doctors in negotiating referral to palliative care. Yet the specificities of the nursing role and how nurses may contribute to timely and effective referrals is not well understood. This study aimed to systematically explore hospital-based nurses’ accounts of the transition to palliative care, and the potential role of nurses in facilitating more effective palliative care transitions. Design Qualitative study using semistructured interviews. Setting Two health services with public as well as private clinical environments in a major metropolitan area of Australia. Participants Hospital-based nurses (n=20) who regularly work with patients at the point of referral and in managing transitions to palliative care. Results Four significant themes emerged from thematic analysis. These include: (1) professional dynamics and the roles played by nurses in initiating the transition to palliative care; (2) the value of nurses’ informal interactions in timely and effective transitions; (3) the emerging challenge of managing task-oriented nursing versus intense emotional nursing work at the point of medical futility and (4) the emotional burden experienced by nurses within this clinical context. Nurses self-reported occupying critical albeit complex roles in the management of medical futility and the transition to palliative care. They reported experiencing significant emotional burden in balancing interpersonal and interprofessional relationships during this time. Conclusions The results suggest that nurses may be utilised in a more formalised and systematic fashion in the context of managing medical futility and the need to topicalise the transition, with the focus shifted away from medical referrals towards more team-based and patient-centred timely transitions. Further research focused on the experiences of doctors, allied health professionals, patients and families is required to provide a broader interdisciplinary understanding of futility and contributions to the negotiation of palliative care. PMID:25270859

[Integration and utilization of physiotherapy in hospice and palliative care : A survey on clinical practice in Germany].

PubMed

Woitha, K; Schneider, N; Wünsch, A; Wiese, B; Fimm, S; Müller-Mundt, G

2017-02-01

Palliative care is an approach that improves the quality of life of patients with incurable and progressive illnesses; therefore, in these situations physiotherapy can play an important role. This study was carried out to examine the integration and utilization of physiotherapy in palliative and hospice care services in Germany. A cross-sectional survey including all palliative care units, specialized outpatient palliative care teams and hospices in Germany (n = 680) in 2013 was carried out. The response rate was 43.5 % (n = 296). Physiotherapy is predominantly applied in palliative care units (79 %) but rarely in hospices (38 %) and outpatient palliative care teams (30 %). A structured physiotherapeutic assessment is rarely carried out even on palliative care units (26 %). Positive effects of physiotherapy are especially described for symptoms, such as edema, pain, constipation and dyspnea. Despite its significant potential to relieve symptoms, physiotherapy is not systematically integrated into palliative care practice in Germany.

Computer screening for palliative care needs in primary care: a mixed-methods study.

PubMed

Mason, Bruce; Boyd, Kirsty; Steyn, John; Kendall, Marilyn; Macpherson, Stella; Murray, Scott A

2018-05-01

Though the majority of people could benefit from palliative care before they die, most do not receive this approach, especially those with multimorbidity and frailty. GPs find it difficult to identify such patients. To refine and evaluate the utility of a computer application (AnticiPal) to help primary care teams screen their registered patients for people who could benefit from palliative care. A mixed-methods study of eight GP practices in Scotland, conducted in 2016-2017. After a search development cycle the authors adopted a mixed-methods approach, combining analysis of the number of people identified by the search with qualitative observations of the computer search as used by primary care teams, and interviews with professionals and patients. The search identified 0.8% of 62 708 registered patients. A total of 27 multidisciplinary meetings were observed, and eight GPs and 10 patients were interviewed. GPs thought the search identified many unrecognised patients with advanced multimorbidity and frailty, but were concerned about workload implications of assessment and care planning. Patients and carers endorsed the value of proactive identification of people with advanced illness. GP practices can use computer searching to generate lists of patients for review and care planning. The challenges of starting a conversation about the future remain. However, most patients regard key components of palliative care (proactive planning, including sharing information with urgent care services) as important. Screening for people with deteriorating health at risk from unplanned care is a current focus for quality improvement and should not be limited by labelling it solely as 'palliative care'. © British Journal of General Practice 2018.

Intrathecal infusions for intractable cancer pain: A qualitative study of the impact on a case series of patients and caregivers

PubMed Central

Hawley, Philippa; Beddard-Huber, Elizabeth; Grose, Cameron; McDonald, William; Lobb, Daphne; Malysh, Louise

2009-01-01

BACKGROUND: The need for intrathecal infusion in a palliative care setting is infrequent. Despite established efficacy, safety and cost effectiveness, this is considered an ‘extraordinary measure’ in Canada. Patients requiring this approach are not typical palliative care patients, having shorter and more uncertain life expectancies. OBJECTIVES: The present study is a qualitative exploration of the impact of intrathecal pump implantation on cancer patients, and also the impact of the intervention on the staff caring for those patients. METHODS: Palliative care unit patients who received an implanted intrathecal pump or dome catheter for intractable cancer pain participated in multiple semistructured interviews. Doctors and nurses caring for each patient were also interviewed. Interviews were recorded and analyzed for themes. The study terminated when saturation was reached. RESULTS: Six patients participated, with up to three interviews each. Twenty-four staff interviews took place. Patients’ hopes and expectations were not always fully met, but the infusions had a profound positive effect on quality of life. Patients expressed anxiety about dependence on the device, and also on a few highly skilled individuals. Staff interviews revealed a significant impact on the ‘culture’ of the palliative care unit. Clear communication of the rationale for infusion was very important, as was regular education about infusion management. CONCLUSIONS: Implanted intrathecal infusion devices are a necessary part of a tertiary level cancer pain management service for the unfortunate minority with intractable pain. Practical recommendations for care are made for palliative care programs contemplating offering intrathecal infusions. PMID:19862372

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

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

PubMed

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

2010-07-01

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

Introducing a model incorporating early integration of specialist palliative care: A qualitative research study of staff's perspectives.

PubMed

Michael, Natasha; O'Callaghan, Clare; Brooker, Joanne E; Walker, Helen; Hiscock, Richard; Phillips, David

2016-03-01

Palliative care has evolved to encompass early integration, with evaluation of patient and organisational outcomes. However, little is known of staff's experiences and adaptations when change occurs within palliative care services. To explore staff experiences of a transition from a service predominantly focused on end-of-life care to a specialist service encompassing early integration. Qualitative research incorporating interviews, focus groups and anonymous semi-structured questionnaires. Data were analysed using a comparative approach. Service activity data were also aggregated. A total of 32 medical, nursing, allied health and administrative staff serving a 22-bed palliative care unit and community palliative service, within a large health service. Patients cared for within the new model were significantly more likely to be discharged home (7.9% increase, p = 0.003) and less likely to die in the inpatient unit (10.4% decrease, p < 0.001). While early symptom management was considered valuable, nurses particularly found additional skill expectations challenging, and perceived patients' acute care needs as detracting from emotional and end-of-life care demands. Staff views varied on whether they regarded the new model's faster-paced work-life as consistent with fundamental palliative care principles. Less certainty about care goals, needing to prioritise care tasks, reduced shared support rituals and other losses could intensify stress, leading staff to develop personalised coping strategies. Services introducing and researching innovative models of palliative care need to ensure adequate preparation, maintenance of holistic care principles in faster work-paced contexts and assist staff dealing with demands associated with caring for patients at different stages of illness trajectories. © The Author(s) 2015.

Why we need more poetry in palliative care.

PubMed

Davies, Elizabeth A

2018-03-23

Although many well-known poems consider illness, loss and bereavement, medicine tends to view poetry more as an extracurricular than as a mainstream pursuit. Within palliative care, however, there has been a long-standing interest in how poetry may help patients and health professionals find meaning, solace and enjoyment. The objective of this paper is to identify the different ways in which poetry has been used in palliative care and reflect on their further potential for education, practice and research. A narrative review approach was used, drawing on searches of the academic literature through Medline and on professional, policy and poetry websites to identify themes for using poetry in palliative care. I identified four themes for using poetry in palliative care. These concerned (1) leadership, (2) developing organisational culture, (3) the training of health professionals and (4) the support of people with serious illness or nearing the end of life. The academic literature was mostly made up of practitioner perspectives, case examples or conceptual pieces on poetry therapy. Patients' accounts were rare but suggested poetry can help some people express powerful thoughts and emotions, create something new and feel part of a community. Poetry is one way in which many people, including patients and palliative care professionals, may seek meaning from and make sense of serious illnesses and losses towards the end of life. It may have untapped potential for developing person-centred organisations, training health professionals, supporting patients and for promoting public engagement in palliative care. © 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.

Pressure Injury Progression and Factors Associated With Different End-Points in a Home Palliative Care Setting: A Retrospective Chart Review Study.

PubMed

Artico, Marco; D'Angelo, Daniela; Piredda, Michela; Petitti, Tommasangelo; Lamarca, Luciano; De Marinis, Maria Grazia; Dante, Angelo; Lusignani, Maura; Matarese, Maria

2018-07-01

Patients with advanced illnesses show the highest prevalence for pressure injuries. In the palliative care setting, the ultimate goal is injury healing, but equally important is wound maintenance, wound palliation (wound-related pain and symptom management), and primary and secondary wound prevention. To describe the course of healing for pressure injuries in a home palliative care setting according to different end-points, and to explore patient and caregiver characteristics and specific care activities associated with their achievement. Four-year retrospective chart review of 669 patients cared for in a home palliative care service, of those 124 patients (18.5%) had at least one pressure injury with a survival rate less than or equal to six months. The proportion of healed pressure injuries was 24.4%. Of the injuries not healed, 34.0% were in a maintenance phase, whereas 63.6% were in a process of deterioration. Body mass index (P = 0.0014), artificial nutrition (P = 0.002), and age <70 years (P = 0.022) emerged as predictive factors of pressure injury complete healing. Artificial nutrition, age, male caregiver (P = 0.034), and spouse (P = 0.036) were factors significantly associated with a more rapid pressure injury healing. Continuous deep sedation was a predictive factor for pressure injury deterioration and significantly associated with a more rapid worsening. Pressure injury healing is a realistic aim in home palliative care, particularly for injuries not exceeding Stage II occurring at least two weeks before death. When assessing pressure injuries, our results highlight the need to also pay attention to artificial nutrition, continuous deep sedation, and the caregiver's role and gender. Copyright © 2018 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Supportive and palliative care for metastatic breast cancer: resource allocations in low- and middle-income countries. A Breast Health Global Initiative 2013 consensus statement.

PubMed

Cleary, James; Ddungu, Henry; Distelhorst, Sandra R; Ripamonti, Carla; Rodin, Gary M; Bushnaq, Mohammad A; Clegg-Lamptey, Joe N; Connor, Stephen R; Diwani, Msemo B; Eniu, Alexandru; Harford, Joe B; Kumar, Suresh; Rajagopal, M R; Thompson, Beti; Gralow, Julie R; Anderson, Benjamin O

2013-10-01

Many women diagnosed with breast cancer in low- and middle-income countries (LMICs) present with advanced-stage disease. While cure is not a realistic outcome, site-specific interventions, supportive care, and palliative care can achieve meaningful outcomes and improve quality of life. As part of the 5th Breast Health Global Initiative (BHGI) Global Summit, an expert international panel identified thirteen key resource recommendations for supportive and palliative care for metastatic breast cancer. The recommendations are presented in three resource-stratified tables: health system resource allocations, resource allocations for organ-based metastatic breast cancer, and resource allocations for palliative care. These tables illustrate how health systems can provide supportive and palliative care services for patients at a basic level of available resources, and incrementally add services as more resources become available. The health systems table includes health professional education, patient and family education, palliative care models, and diagnostic testing. The metastatic disease management table provides recommendations for supportive care for bone, brain, liver, lung, and skin metastases as well as bowel obstruction. The third table includes the palliative care recommendations: pain management, and psychosocial and spiritual aspects of care. The panel considered pain management a priority at a basic level of resource allocation and emphasized the need for morphine to be easily available in LMICs. Regular pain assessments and the proper use of pharmacologic and non-pharmacologic interventions are recommended. Basic-level resources for psychosocial and spiritual aspects of care include health professional and patient and family education, as well as patient support, including community-based peer support. Copyright © 2013 The Authors. Published by Elsevier Ltd.. All rights reserved.

Intervention for depression among palliative care patients and their families: A study protocol for evaluation of a training program for professional care staff.

PubMed

Hallford, David J; McCabe, Marita P; Mellor, David; Davison, Tanya E; Goldhammer, Denisa L; George, Kuruvilla; Storer, Shane

2011-06-13

Clinical depression is highly prevalent yet under-detected and under-treated in palliative care settings and is associated with a number of adverse medical and psychological outcomes for patients and their family members. This article presents a study protocol to evaluate a training intervention for non-physician palliative care staff to improve the recognition of depression and provide support for depressed patients and their family members. Details of the hypotheses and expected outcomes, study design, training program development and evaluation measures are described. A randomised controlled trial will be implemented across two palliative care services to evaluate the "Training program for professional carers to recognise and manage depression in palliative care settings". Pre-, post- and three-month follow-up data will be collected to assess: the impact of the training on the knowledge, attitudes, self-efficacy and perceived barriers of palliative care staff when working with depression; referral rates for depression; and changes to staff practices. Quantitative and qualitative methods, in the form of self-report questionnaires and interviews with staff and family members, will be used to evaluate the effectiveness of the intervention. This study will determine the effectiveness of an intervention that aims to respond to the urgent need for innovative programs to target depression in the palliative care setting. The expected outcome of this study is the validation of an evidence-based training program to improve staff recognition and appropriate referrals for depression, as well as improve psychosocial support for depressed patients and their family members. Australia and New Zealand Clinical Trials Register (ANZCTR): ACTRN12610000183088.

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

PubMed

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

2017-05-01

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