Advance care planning in dementia: recommendations for healthcare professionals.

BACKGROUND: Advance care planning (ACP) is a continuous, dynamic process of reflection and dialogue between an individual, those close to them and their healthcare professionals, concerning the individual's preferences and values concerning future treatment and care, including end-of-life care. Despite universal recognition of the importance of ACP for people with dementia, who gradually lose their ability to make informed decisions themselves, ACP still only happens infrequently, and evidence-based recommendations on when and how to perform this complex process are lacking. We aimed to develop evidence-based clinical recommendations to guide professionals across settings in the practical application of ACP in dementia care. METHODS: Following the Belgian Centre for Evidence-Based Medicine's procedures, we 1) performed an extensive literature search to identify international guidelines, articles reporting heterogeneous study designs and grey literature, 2) developed recommendations based on the available evidence and expert opinion of the author group, and 3) performed a validation process using written feedback from experts, a survey for end users (healthcare professionals across settings), and two peer-review groups (with geriatricians and general practitioners). RESULTS: Based on 67 publications and validation from ten experts, 51 end users and two peer-review groups (24 participants) we developed 32 recommendations covering eight domains: initiation of ACP, evaluation of mental capacity, holding ACP conversations, the role and importance of those close to the person with dementia, ACP with people who find it difficult or impossible to communicate verbally, documentation of wishes and preferences, including information transfer, end-of-life decision-making, and preconditions for optimal implementation of ACP. Almost all recommendations received a grading representing low to very low-quality evidence. CONCLUSION: No high-quality guidelines are available for ACP in dementia care. By combining evidence with expert and user opinions, we have defined a unique set of recommendations for ACP in people living with dementia. These recommendations form a valuable tool for educating healthcare professionals on how to perform ACP across settings.

Euthanasia and physician-assisted suicide: A white paper from the European Association for Palliative Care.

BACKGROUND: In recognition of the ongoing discussion on euthanasia and physician-assisted suicide, the Board of Directors of the European Association for Palliative Care commissioned this white paper from the palliative care perspective. AIM: This white paper aims to provide an ethical framework for palliative care professionals on euthanasia and physician-assisted suicide. It also aims to provide an overview on the available evidence as well as a discourse of ethical principles related to these issues. DESIGN: Starting from a 2003 European Association for Palliative Care position paper, 21 statements were drafted and submitted to a five-round Delphi process PARTICIPANTS: A panel with 17 experts commented on the paper in round 1. Board members of national palliative care or hospice associations that are collective members of European Association for Palliative Care were invited to an online survey in rounds 2 and 3. The expert panel and the European Association for Palliative Care board members participated in rounds 4 and 5. This final version was adopted as an official position paper of the European Association for Palliative Care in April 2015. RESULTS: Main topics of the white paper are concepts and definitions of palliative care, its values and philosophy, euthanasia and physician-assisted suicide, key issues on the patient and the organizational level. The consensus process confirmed the 2003 European Association for Palliative Care white paper and its position on the relationship between palliative care and euthanasia and physician-assisted suicide. CONCLUSION: The European Association for Palliative Care feels that it is important to contribute to informed public debates on these issues. Complete consensus seems to be unachievable due to incompatible normative frameworks that clash.

Palliative inpatients in general hospitals: a one day observational study in Belgium.

BACKGROUND: Hospital care plays a major role at the end-of-life. But little is known about the overall size and characteristics of the palliative inpatient population. The aim of our study was to analyse these aspects. METHODS: We conducted a one-day observational study in 14 randomly selected Belgian hospitals. Patients who met the definition of palliative patients were identified as palliative. Then, information about their socio-demographic characteristics, diagnoses, prognosis, and care plan were recorded and analysed. RESULTS: There were 2639 in-patients on the day of the study; 9.4% of them were identified as "palliative". The mean age of the group was 72 years. The primary diagnosis was cancer in 51% of patients and the estimated life expectancy was shorter than 3 months in 33% of patients and longer than 1 year in 28% of patients. The professional caregivers expected for most of the patients (73%), that the treatment would improve patient comfort rather than prolong life. Antibiotics, transfusions, treatments specific to the pathology, and artificial nutrition were administered in 90%, 78%, 57% and 50% of the patients, respectively, but were generally given with a view to controlling the symptoms. CONCLUSIONS: This analysis presents a first national estimate of the palliative inpatient population. Our results confirm that hospitals play a major role at the end-of-life, with one out of ten inpatients identified as a "palliative" patient. These data also demonstrate the complexity of the palliative population and the substantial diversity of care that they can require.

Terminal patients in Belgian nursing homes: a cost analysis.

Policy makers and health care payers are concerned about the costs of treating terminal patients. This study was done to measure the costs of treating terminal patients during the final month of life in a sample of Belgian nursing homes from the health care payer perspective. Also, this study compares the costs of palliative care with those of usual care. This multicenter, retrospective cohort study enrolled terminal patients from a representative sample of nursing homes. Health care costs included fixed nursing home costs, medical fees, pharmacy charges, other charges, and eventual hospitalization costs. Data sources consisted of accountancy and invoice data. The analysis calculated costs per patient during the final month of life at 2007/2008 prices. Nineteen nursing homes participated in the study, generating a total of 181 patients. Total mean nursing home costs amounted to 3,243 € per patient during the final month of life. Total mean nursing home costs per patient of 3,822 € for patients receiving usual care were higher than costs of 2,456 € for patients receiving palliative care (p = 0.068). Higher costs of usual care were driven by higher hospitalization costs (p < 0.001). This study suggests that palliative care models in nursing homes 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.

The PRISMA Symposium 4: how should Europe progress end-of-life and palliative clinical care research? Recommendations from the proceedings.

Within aging European populations, the need to progress end-of-life and palliative care policy is becoming increasingly important. PRISMA, a European Commission-funded project, aimed to identify and coordinate research priorities, measurement, and practice in end-of-life care for Europe. PRISMA conducted a three-year multidisciplinary program to advance science and policy and to enhance coordination of cross-national activity. The final PRISMA symposium was convened to disseminate our new knowledge and activities and was held for European Union-level and national-level policy makers, policy influencers, and funders. Nearly 100 international invited delegates participated in the symposium, with the understanding that European research is aided by international partnerships and the free exchange of ideas and resources across states. The series of invited speakers, roundtables, and floor discussions underlined the necessity for clinical and public priorities to inform holistic outcome measurement research supported by government action informed by policy. Sustainable leadership, clear terminology and pan-European collaborative networks, and protected research funding designated for end-of-life or palliative care were identified as essential to progress end-of-life and palliative care research and innovation in Europe. An agreed set of outcome measures for end-of-life and palliative care that builds on previous pan-European projects is fundamental to a cross-national program of development in order to advance research and innovation within Europe.