Ethnicity, Older People and Palliative Care

This report brings together established and developing work on older people, ethnicity and palliative care from PRIAE (Policy Research Institute on Ageing and Ethnicity) and the National Council for Palliative Care (NCPC). It draws attention to the palliative care needs and experiences of elders from groups most commonly referred to in the UK as being 'minority ethnic'. The recognition of how multiple and simultaneous disadvantages can affect palliative care needs and experiences is an issue of broad relevance to palliative care - and one that is not restricted to the discussion of old age and ethnicity. In this sense, the report also aims to encourage more complex approaches to inequality in palliative care for all service users

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

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

Barriers to the development of palliative care in Western Europe

The Eurobarometer Survey of the <i>EAPC Task Force on the Development of Palliative Care in Europe</i> is part of a programme of work to produce comprehensive information on the provision of palliative care across Europe. Aim: To identify barriers to the development of palliative care in Western Europe. Method: A qualitative survey was undertaken amongst boards of national associations, eliciting opinions on opportunities for, and barriers to, palliative care development. By July 2006, 44/52 (85%) European countries had responded to the survey; we report here on the results from 22/25 (88%) countries in Western Europe. Analysis: Data from the Eurobarometer survey were analysed thematically by geographical region and by the degree of development of palliative care in each country. Results: From the data contained within the Eurobarometer, we identified six significant barriers to the development of palliative care in Western Europe: (i) Lack of palliative care education and training programmes (ii) Lack of awareness and recognition of palliative care (iii) Limited availability of/knowledge about opioid analgesics (iv) Limited funding (v) Lack of coordination amongst services (vi) Uneven palliative care coverage. Conclusion: Findings from the EAPC Eurobarometer survey suggest that barriers to the development of palliative care in Western Europe may differ substantially from each other in both their scope and context and that some may be considered to be of greater significance than others. A number of common barriers to the development of the discipline do exist and much work still remains to be done in the identified areas. This paper provides a road map of which barriers need to be addressed

The Decision Making Process of Being Palliative Volunteer

Palliative care delivery in Surabaya community, Indonesia, is in collaboration with palliative volunteers. The decision to be palliative volunteer was not easy, mainly because of financial matter, time limitation, and role conflict. This study aimed to analyze the decision making process of being a palliative volunteer in Surabaya. This qualitative study involved 13 female palliative volunteers under the supervision of Public Health Center (PHC) of Rangkah. In-depth-interview was used for data collection. Instruments used were interview guideline, observation sheet, and voice recorder. Collaizi method was used for data analysis. The majority was 40-50 years old, married, housewife, and high school graduated. Each participant manages 5-8 patients to be home-visited regularly. The driving force and the reason to persistently be a palliative volunteer was the willingness to help others in need. The major entry point acting as stimulus was health care professional in the Rangkah PHC. The decision making model applied was descriptive model, because despite of insufficient information through various entry points but the decision made was fast and persistent

EAPC task force on education for psychologists in palliative care

It is argued that psychological aspects of care and psychosocial problems are essential components of palliative care. However, the provision of appropriate services remains somewhat arbitrary. Unlike medical and nursing care, which are clearly delivered by doctors and nurses respectively, psychological and psychosocial support in palliative care are not assigned exclusively to psychologists. It is generally expected that all professionals working in palliative care should have some knowledge of the psychological dynamics in terminal illness, as well as skills in communication and psychological risk assessment. On the one hand, palliative care education programmes for nurses and doctors comprise a considerable amount of psychological and psychosocial content. On the other hand, only a few palliative care associations provide explicit information on the role and tasks of psychologists in palliative care. Psychologists’ associations do not deal much with this issue either. If they refer to it at all, it is in the context of the care of the aged, end-of-life care or how to deal with grief

Health care professionals' perceptions towards lifelong learning in palliative care for general practitioners: a focus group study

Background: There is a growing need for palliative care. The majority of palliative patients prefer their general practitioner (GP) to organize their palliative home care. General practitioners need a range of competences to perform this task. However, there has been no general description so far of how GPs keep these competences up-to-date. The present study explores current experiences, views and preferences towards training and education in palliative care among GPs, palliative home-care professionals and professionals from organizations who provide training and education. Methods: Five focus groups were brought together in Belgium, with a total of 29 participants, including members of the three categories mentioned above. They were analysed using a constant comparison method. Results: The analysis revealed that undergraduate education and continuing medical education (CME) while in practice, is insufficient to prepare GPs for their palliative work. Workplace learning (WPL) through collaboration with specialized palliative home-care nurses seems to be a valuable alternative. Conclusions: The effectiveness of undergraduate education might be enhanced by adding practical experience. Providers of continuing medical education should look to organize interactive, practice-based and interprofessional sessions. Therefore, teachers need to be trained to run small group discussions. In order to optimize workplace learning, health care professionals should be trained to monitor each other’s practice and to provide effective feedback. Further research is needed to clarify which aspects of interprofessional teamwork (e.g. professional hierarchy, agreements on tasks and responsibilities) influence the effectiveness of workplace learning

Access to Specialist Palliative Care Services and Place of Death in Ireland

The aim of this report is to provide data, analysis and commentary to stimulate discussion on emerging trends in relation to the provision of specialist palliative care in Ireland. The report mines existing data from four key sources -- the Health Service Executive's (HSE) Minimum Data Set for Palliative Care; the National Cancer Registry; the Hospital Inpatient Enquiry, and HSE population records (2011) -- to compare and contrast administrative regions of the health service against national averages on a number of key indicators (number of hospice beds, waiting times for first assessment of patient, place of death, etc), and to examine the impact of varying levels of investment in palliative care on access to services and service activity. In particular, the report seeks to explore possible relationships between access to specialist palliative care services and place of death. It is clear from the data emerging from all four sources that there is a marked correlation between the availability or otherwise of hospice/palliative care services and where people die

Palliative care and Parkinson's disease : meeting summary and recommendations for clinical research

Introduction: Palliative care is an approach to caring for patients and families affected by serious illnesses that focuses on the relief of suffering through the management of medical symptoms, psychosocial issues, advance care planning and spiritual wellbeing. Over the past decade there has been an emerging clinical and research interest in the application of palliative care approaches to Parkinson’s disease (PD) and outpatient palliative care services are now offered by several movement disorders centers. Methods: An International Working Group Meeting on PD and Palliative Care supported by the Parkinson’s Disease Foundation was held in October 2015 to review the current state of the evidence and to make recommendations for clinical research and practice. Results: Topics included: 1) Defining palliative care for PD; 2) Lessons from palliative care for heart failure and other chronic illnesses; 3) Patient and caregiver Needs; 4) Needs assessment tools; 5) Intervention strategies; 6) Predicting prognosis and hospice referrals; 7) Choice of appropriate outcome measures; 8) Implementation, dissemination and education research; and 9) Need for research collaborations. We provide an overview of these discussions, summarize current evidence and practices, highlight gaps in our knowledge and make recommendations for future research. Conclusions: Palliative Care for PD is a rapidly growing area which holds great promise for improving outcomes for PD patients and their caregivers. While clinical research in this area can build from lessons learned in other diseases, there is a need for observational, methodological and interventional research to address the unique needs of PD patients and caregivers

Palliative home-based technology from a practitioner's perspective: benefits and disadvantages

This critical review paper explores the concept of palliative home-based technology from a practitioner's perspective. The aim of the critical review was to scope information available from published and unpublished research on the current state of palliative home-based technology, practitioner-focused perspectives, patient-focused perspectives, quality of life, and the implications for clinical practice. Published and unpublished studies were included. An example of one UK patient-centered home-based technology is explored as an exemplar. The evidence suggests that despite the challenges, there are numerous examples of good practice in relation to palliative home-based technology. Improvements in technology mean that telehealth has much to offer people being cared for at home with palliative needs. However, some of the evaluative evidence is limited, and further rigor is needed when evaluating future technology-based solutions innovations