Thomas Lynch

Mapping Levels of Palliative Care Development: A Global Update

Palliative care is coming to be regarded as a human right. Yet globally, palliative care development appears patchy and comparative data about the distribution of services are generally unavailable. Our purpose is to categorize hospice-palliative care development, country by country, throughout the world, and then depict this development in a series of world and regional maps. We adopt a multimethod approach, which involves the synthesis of evidence from published and grey literature, regional experts, and a task force of the European Association of Palliative Care. Development is categorized using a four-part typology constructed during a previous review of palliative care in Africa. The four categories are (1) no identified hospice-palliative care activity, (2) capacity building activity but no service, (3) localized palliative care provision, and (4) countries where palliative care activities are approaching integration with mainstream service providers. We found palliative care services in 115/234 countries. Total countries in each category are as follows: (1) no identified activity 78 (33%), (2) capacity building 41 (18%), (3) localized provision 80 (34%), and (4) approaching integration 35 (15%). The ratio of services to population among Group 4 countries ranges from 1:43,000 (in the UK) to 1:4.28 million (in Kenya); among Group 3 countries it ranges from 1:14,000 (in Gibraltar) to 1:158 million (in Pakistan). The typology differentiates levels of palliative care development across the four hemispheres and in rich and poor settings. Although half of the worlds countries have a palliative care service, far more are needed before such services are generally accessible worldwide.

Special ArticleMapping Levels of Palliative Care Development: A Global Update

Our purpose is to categorize palliative care development, country by country, throughout the world, showing changes over time. We adopt a multi-method approach. Development is categorized using a six-part typology: Group 1 (no known hospice-palliative care activity) and Group 2 (capacity-building activity) are the same as developed during a previous study (2006), but Groups 3 and 4 have been subdivided to produce two additional levels of categorization: 3a) Isolated palliative care provision, 3b) Generalized palliative care provision, 4a) Countries where hospice-palliative care services are at a stage of preliminary integration into mainstream service provision, and 4b) Countries where hospice-palliative care services are at a stage of advanced integration into mainstream service provision. In 2011, 136 of the worlds 234 countries (58%) had at least one palliative care service--an increase of 21 (+9%) from 2006, with the most significant gains having been made in Africa. Advanced integration of palliative care has been achieved in only 20 countries (8.5%). Total countries in each category are as follows: Group 1, 75 (32%); Group 2, 23 (10%); Group 3a, 74 (31.6%); Group 3b, 17 (7.3%); Group 4a, 25 (10.7%); and Group 4b, 20 (8.5%). Ratio of services to population among Group 4a/4b countries ranges from 1:34,000 (in Austria) to 1:8.5 million (in China); among Group 3a/3b countries, from 1:1000 (in Niue) to 1:90 million (in Pakistan). Although more than half of the worlds countries have a palliative care service, many countries still have no provision, and major increases are needed before palliative care is generally accessible worldwide.

Barriers to the Development of Palliative Care in the Countries of Central and Eastern Europe and the Commonwealth of Independent States

During the years of communist rule in the countries of Central and Eastern Europe (CEE) and the Commonwealth of Independent States (CIS), there were few significant palliative care developments. Since the political changes of the 1990s, however, there has been a steady development of palliative care services in this region. In 2005, the European Association for Palliative Care Task Force for the Development of Palliative Care in Europe undertook a qualitative survey among boards of national associations to identify barriers to the development of palliative care in CEE and CIS. By July 2006, 44 of 52 (85%) European countries had responded to the survey, but we report here on the specific results from 22 of 27 (81%) countries in CEE and CIS. Data were analyzed thematically by geographic region and by the degree of development of palliative care in each country. Four significant barriers to the development of palliative care were identified: 1) financial and material resources; 2) problems relating to opioid availability; 3) lack of public awareness and government recognition of palliative care as a field of specialization; and 4) lack of palliative care education and training programs. Despite huge variations in the levels of provision across the countries of CEE and the CIS, data collected in the qualitative survey reveal that the development of palliative care in many countries continues to remain uneven, uncoordinated, and poorly integrated across wider health care systems, mainly as a result of inadequate investment and limited palliative care service capacity.

Barriers to the development of palliative care in Western Europe

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.

Official certification of doctors working in palliative medicine in Europe: data from an EAPC study in 52 European countries.

There is an increasing move to recognize palliative medicine as an area of certificated specialization. Drawing on a survey of palliative care provision in the World Health Organization European region, an overview of palliative care specialization and accreditation practices was presented. Within an international survey to key experts in palliative care carried out in 2005, conducted in 52 countries, a question about the certification for palliative care professionals was included. Information was obtained for 43 of the 52 countries surveyed and all 43 countries (83%) provided data on certification. Palliative medicine has specialty status in just two European countries: Ireland and the UK. In five countries it is considered as a sub-specialty, for which a second certification is required: Poland, Romania, Slovakia and Germany and, recently, France. Some 10 other countries have started the process of certification for palliative medicine, in all cases opting for sub-specialty status that follows full recognition in an established specialty. Across countries there is disparity in the certification criteria followed and considerable variability in the demands that are made in order to achieve certification. Further studies are needed to focus in depth on palliative medicine certification and accreditation across Europe. Establishing uniform approaches to certification for palliative medicine in different European countries will contribute to wider take-up of specialty status and the improved recognition of palliative care as a discipline. Palliative Medicine 2007; 21 : 683—687

Coverage and development of specialist palliative care services across the World Health Organization European Region (2005–2012): Results from a European Association for Palliative Care Task Force survey of 53 Countries

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.

Promoting perioperative advance care planning: a systematic review of advance care planning decision aids.

This systematic review identifies possible decision aids that promote perioperative advance care planning (ACP) and synthesizes the available evidence regarding their use. Using PubMed, EMBASE, Cochrane, SCOPUS, Web of Science, CINAHL, PsycINFO and Sociological Abstracts, researchers identified and screened articles for eligibility. Data were abstracted and risk of bias assessed for included articles. Thirty-nine of 5327 articles satisfied the eligibility criteria. Primarily completed in outpatient ambulatory populations, studies evaluated a variety of ACP decision aids. None were evaluated in a perioperative population. Fifty unique outcomes were reported with no head-to-head comparisons conducted. Findings are likely generalizable to a perioperative population and can inform development of a perioperative ACP decision aid. Future studies should compare the effectiveness of ACP decision aids.

Why don't end-of-life conversations go viral? A review of videos on YouTube

Objective To identify videos on YouTube concerning advance care planning (ACP) and synthesise existing video content and style elements. Methods Informed by stakeholder engagement, two researchers searched YouTube for ACP videos using predefined search terms and snowballing techniques. Videos identified were reviewed and deemed ineligible for analysis if they: targeted healthcare professionals; contained irrelevant content; focused on viewers under the age of 18; were longer than 7 min in duration; received fewer than 150 views; were in a language other than English; or were a duplicate version. For each video, two investigators independently extracted general information as well as video content and stylistic characteristics. Results The YouTube search identified 23 100 videos with 213 retrieved for assessment and 42 meeting eligibility criteria. The majority of videos had been posted to YouTube since 2010 and produced by organisations in the USA (71%). Viewership ranged from 171 to 10 642. Most videos used a documentary style and featured healthcare providers (60%) rather than patients (19%) or families (45%). A minority of videos (29%) used upbeat or hopeful music. The videos frequently focused on completing legal medical documents (86%). Conclusions None of the ACP videos on YouTube went viral and a relatively small number of them contained elements endorsed by stakeholders. In emphasising the completion of legal medical documents, videos may have failed to support more meaningful ACP. Further research is needed to understand the features of videos that will engage patients and the wider community with ACP and palliative and end-of-life care conversations.

Learning from challenges in the recruitment of patients with advanced cancer from hospice day care

Abstract Background The background literature suggests that recruiting patients with advanced cancer from hospice day care to participate in a research study may be challenging. Aim This paper describes such challenges and considers whether those faced by researchers in this study reflect those recorded in the literature. Method Six hundred and twenty-six patients with advanced cancer from hospice day care units in the north-west region of England were recruited as part of a multi-centre mixed methods study to determine the prevalence, aetiology, and natural history of depression and demoralization. Results A number of challenges were reported (i) data collection sometimes presented researchers with ethical dilemmas, although the ability to respond appeared to be influenced by disciplinary background and training, (ii) emotional impact of the research may force researchers to face a variety of emotional responses, and (iii) dilemmas relating to the setting and maintenance of role boundaries included determining the level of emotional connection required to establish relationships of trust between researchers and participants, and imbalances in power and status. Discussion Many of the challenges faced by researchers to recruit patients with advanced cancer from hospice day care to participate in this research study were similar to those described in the literature. Conclusion Most researchers reported that the overall experience was positive, although a number of moral and ethical dilemmas required ongoing reflection and continuing support and supervision to resolve. It is hoped that other researchers engaging in similar forms of research in the future can learn from the challenges that have been identified.

A review of paper-based advance care planning aids

BackgroundAdvance care planning (ACP) aids can help prepare patients, family members, and physicians for in-the-moment medical decision-making. We wished to describe the content and approach of paper-based ACP aids in order to characterize existing aids and inform the development of a new ACP aid.MethodsPaper-based ACP aids were identified through an environmental scan and screened for eligibility. ACP conceptual frameworks and data were gathered via stakeholder engagement and used to inform the coding framework that two investigators used to independently code each aid. A directed content analysis was conducted on these eligible aids. Aids were categorized through a deliberative process with an investigator abstracting general information for each aid.ResultsFifteen aids met the eligibility criteria. They ranged in length from 6 to 78 pages with the average aid written at an eighth-grade reading level. The content analysis revealed that many aids encouraged choosing a surrogate decision maker and informed users about legal medical documents. Fewer than half of the aids facilitated patient clarification of values regarding quality of life issues. The authors identified and termed the following three categories of aids: informative; semi-action oriented; and action-oriented. It was often unclear whether patients contributed to the development or testing of the ACP aids reviewed.ConclusionsMost existing paper-based ACP aids address legal matters such as completing an advance directive. Only a minority elicited patient values and it was unclear whether any were developed in partnership with patients. Future development of ACP aids should account for patient preferences with a goal of supporting in-the-moment medical decision-making.