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Background: The WHO definition of palliative care includes bereavement support as integral to palliative care, yet a previous survey of bereavement support in palliative care in Europe has shown a range of service responses to loss. A rigorous approach to agreeing and implementing a palliative care bereavement framework was required. Aim: The aim of this study was to develop consensus on best-practice recommendations for bereavement care principles, structures, processes and delivery based on current practice and evidence. Design: In accordance with Guidance on Conducting and Reporting Delphi Studies, a consensus-building five-round Delphi technique was performed. A scoping review of research literature informed drafting of 54 statements by the EAPC Bereavement Task Force. Evaluation of the statements was performed by an expert panel using a 5-point Likert scale. ⩾80% agreement were defined as essential items and 75%–79% agreement were defined as desirable items. Items with a consensus rating <75% were revised during the process. Setting/participants: The Delphi study was carried out by an expert panel among membership organisations of the European Association for Palliative Care. Results: In total, 376 email requests to complete Delphi questionnaire were distributed with a response rate of 23% (n = 87) and a follow-up response-rate of 79% (n = 69). Of the initial 54 statements in six dimensions, 52 statements were endorsed with 26 essential statements and 26 desirable statements. Conclusions: The six dimensions and 52 statements agreed through this Delphi study clarify a coherent direction for development of bereavement services in palliative care in Europe. [ABSTRACT FROM AUTHOR]

Background: Outcome measurement plays an increasing role in improving the quality, effectiveness, efficiency and availability of palliative care. Aim: To provide expert recommendations on outcome measurement in palliative care in clinical practice and research. Methods: Developed by a European Association for Palliative Care Task Force, based on literature searches, international expert workshop, development of outcome measurement guidance and international online survey. A subgroup drafted a first version and circulated it twice to the task force. The preliminary final version was circulated to wider expert panel and 28 international experts across 20 European Association for Palliative Care member associations and the European Association for Palliative Care Board of Directors and revised according to their feedback. The final version was approved by the European Association for Palliative Care Board for adoption as an official European Association for Palliative Care position paper. Results: In all, 12 recommendations are proposed covering key parameters of measures, adequate measures for the task, introduction of outcome measurement into practice, and national and international outcome comparisons and benchmarking. Compared to other recommendations, the White Paper covers similar aspects but focuses more on outcome measurement in clinical care and the wider policy impact of implementing outcome measurement in clinical palliative care. Patient-reported outcome measure feedback improves awareness of unmet need and allows professionals to act to address patients’ needs. However, barriers and facilitators have been identified when implementing outcome measurement in clinical care that should be addressed. Conclusion: The White Paper recommends the introduction of outcome measurement into practice and outcomes that allow for national and international comparisons. Outcome measurement is key to understanding different models of care across countries and, ultimately, patient outcome having controlled for differing patients characteristics. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disabilities often present with unique challenges that make it more difficult to meet their palliative care needs. Aim: To define consensus norms for palliative care of people with intellectual disabilities in Europe. Design: Delphi study in four rounds: (1) a taskforce of 12 experts from seven European countries drafted the norms, based on available empirical knowledge and regional/national guidelines; (2) using an online survey, 34 experts from 18 European countries evaluated the draft norms, provided feedback and distributed the survey within their professional networks. Criteria for consensus were clearly defined; (3) modifications and recommendations were made by the taskforce; and (4) the European Association for Palliative Care reviewed and approved the final version. Setting and participants: Taskforce members: identified through international networking strategies. Expert panel: a purposive sample identified through taskforce members’ networks. Results: A total of 80 experts from 15 European countries evaluated 52 items within the following 13 norms: equity of access, communication, recognising the need for palliative care, assessment of total needs, symptom management, end-of-life decision making, involving those who matter, collaboration, support for family/carers, preparing for death, bereavement support, education/training and developing/managing services. None of the items scored less than 86% agreement, making a further round unnecessary. In light of respondents’ comments, several items were modified and one item was deleted. Conclusion: This White Paper presents the first guidance for clinical practice, policy and research related to palliative care for people with intellectual disabilities based on evidence and European consensus, setting a benchmark for changes in policy and practice. [ABSTRACT FROM AUTHOR]

The article presents a study that defines the optimal palliative care in dementia. The study provides a brief overview about the disease. The study invited 89 experts from 27 countries to evaluate a two-round online survey with feedback. It also suggests the availability of immediate and full consensus on the eight domains, including the recommendations person-centered care, communication and shared decision-making and optimal treatment of symptoms.

The article focuses on the White Paper of the European Association for Palliative Care (EAPC) on euthanasia and physician-assisted suicide. It mentions White Paper ignoring the extensive experience and substantial body of relevant empirical evidence in jurisdictions that have legalized euthanasia. It states the Canadian palliative care community reflecting on ways of reconciling traditional palliative care values.

Background: People with dementia requiring palliative care have multiple needs, which are amplified in long-term care settings. The European Association for Palliative Care White Paper offers recommendations for optimal palliative care in dementia integral for this population, providing useful guidance to inform interventions addressing their specific needs. Aim: The aim of this study is to describe the components of palliative care interventions for people with dementia in long-term care focusing on shared decision-making and examine their alignment to the European Association for Palliative Care domains of care. Design: Systematic review with narrative synthesis (PROSPERO ID: CRD42018095649). Data sources: Four databases (MEDLINE, CINAHL, PsycINFO and CENTRAL) were searched (earliest records – July 2019) for peer-reviewed articles and protocols in English, reporting on palliative care interventions for people with dementia in long-term care, addressing European Association for Palliative Care Domains 2 (person-centred) or 3 (setting care goals) and ⩾1 other domain. Results: Fifty-one papers were included, reporting on 32 studies. For each domain (1–10), there were interventions found aiming to address its goal, although no single intervention addressed all domains. Domain 7 (symptom management; n = 19), 6 (avoiding overly aggressive treatment; n = 18) and 10 (education; n = 17) were the most commonly addressed; Domain 5 (prognostication; n = 7) and 4 (continuity of care; n = 2) were the least addressed. Conclusion: Almost all domains were addressed across all interventions currently offered for this population to various degrees, but not within a singular intervention. Future research optimally needs to be theory driven when developing dementia-specific interventions at the end of life, with the European Association for Palliative Care domains serving as a foundation to inform the best care for this population. [ABSTRACT FROM AUTHOR]

Background: Research is important internationally, impacting on health service provision and patient benefit. Journals play an important dissemination role, but there may be geographical bias, potentially affecting access to evidence. Aim: To understand if there is a relationship between the continent of journals and that of contributing authors. Design: Bibliometric analysis of journal citation report data (June 2018). Odds ratio of association of an author being from region, region of journal publication, publication model and the number of papers. Setting: Journals specialising in palliative care research, with an impact factor above the median impact factor for their most common indexing category. Results: Five journals: three published in Europe (Palliative Medicine, BMJ Supportive and Palliative Care, and BMC Palliative Care) and two in North America (Journal of Pain and Symptom Management and Journal of Palliative Medicine). Authors were from 30+ countries, but mostly North America (54.18%) or Europe (27.94%). Preliminary sensitivity tests show that the odds of an author being from a North American institution increase 16.4 times (p < 0.01; 95% confidence interval: 12.9, 20.8) if the region of journal publication is North America. The odds of an author being from a European institution is 14.0 times (p < 0.01; 95% confidence interval: 10.9, 17.9) higher if the region of journal publication is Europe. Conclusion: Publishers, editors and authors are concentrated in North America or Europe. North American authors are more present in North American journals and European authors in European journals. This polarised approach, if replicated across readerships, may lead to research waste, duplication, and be sub-optimal for healthcare development. [ABSTRACT FROM AUTHOR]

Background: The evolution of the provision of palliative care specialised services is important for planning and evaluation. Aim: To examine the development between 2005 and 2012 of three specialised palliative care services across the World Health Organization European Region – home care teams, hospital support teams and inpatient palliative care services. Design and setting: Data were extracted and analysed from two editions of the European Association for Palliative Care Atlas of Palliative Care in Europe. Significant development of each type of services was demonstrated by adjusted residual analysis, ratio of services per population and 2012 coverage (relationship between provision of available services and demand services estimated to meet the palliative care needs of a population). For the measurement of palliative care coverage, we used European Association for Palliative Care White Paper recommendations: one home care team per 100,000 inhabitants, one hospital support team per 200,000 inhabitants and one inpatient palliative care service per 200,000 inhabitants. To estimate evolution at the supranational level, mean comparison between years and European sub-regions is presented. Results: Of 53 countries, 46 (87%) provided data. Europe has developed significant home care team, inpatient palliative care service and hospital support team in 2005–2012. The improvement was statistically significant for Western European countries, but not for Central and Eastern countries. Significant development in at least a type of services was in 21 of 46 (46%) countries. The estimations of 2012 coverage for inpatient palliative care service, home care team and hospital support team are 62%, 52% and 31% for Western European and 20%, 14% and 3% for Central and Eastern, respectively. Conclusion: Although there has been a positive development in overall palliative care coverage in Europe between 2005 and 2012, the services available in most countries are still insufficient to meet the palliative care needs of the population. [ABSTRACT FROM AUTHOR]

The Eurobarometer Survey of the EAPC Task Force on the Development of Palliative Care in Europe 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; and (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. [ABSTRACT FROM PUBLISHER]

The European Association for Palliative Care Task (EAPC) Force on the Development of Palliative Care in Europe was created in 2003 and the results of its work are now being reported in full, both here and in several other publications. The objective of the Task Force is to assess the degree of palliative care development in the European Region as defined by the World Health Organization (WHO). The Task Force is a collaboration between EAPC, the International Observatory on End of Life Care, Help the Hospices and the International Association for Hospice and Palliative Care. The University of Navarra have collaborated in the dissemination of results and is involved in further developments of this group. Four studies, each with different working methods, made up the study protocol: a literature review, a review of all the existing palliative care directories in Europe, a qualitative ‘Eurobarometer’ survey and a quantitative ‘Facts Questionnaire’ survey. The work of the Task Force covers the entire WHO European Region of 52 countries. In this article we present a comparative study on the development of palliative care in Europe, drawing on all four elements of the study. Different models of service delivery have been developed and implemented throughout the countries of Europe. For example, in addition to the UK, the countries of Germany, Austria, Poland and Italy have a well-developed and extensive network of hospices. The model for mobile teams or hospital support teams has been adopted in a number of countries, most notably in France. Day Centres are a development that is characteristic of the UK with hundreds of these services currently in operation. The number of beds per million inhabitants ranges between 45–75 beds in the most advanced European countries, to only a few beds in others. Estimates on the number of physicians working full time in palliative care are shown. The countries with the highest development of palliative care in their respective subregions as measured in terms of ratio of services per one million inhabitants are: Western Europe - UK (15); Central and Eastern Europe - Poland (9); Commonwealth of Independent States - Armenia (8). This paper also presents indicators on the development of palliative care based on the bibliometric analysis of scientific journals and on the vitality of the palliative care movement in each country. [ABSTRACT FROM AUTHOR]

This paper explores the implications for palliative care practitioners of the pre-eminence of autonomy as an ethical principle in contemporary health care ethics. It is suggested that some of the consequences of respecting patient autonomy might be unacceptable to carers, particularly when they feel their own autonomy might be compromised or their ethical values threatened. [ABSTRACT FROM AUTHOR]