Revised European Association for Palliative Care (EAPC) recommended framework on palliative sedation: An international Delphi study.

BACKGROUND: The European Association for Palliative Care (EAPC) acknowledges palliative sedation as an important, broadly accepted intervention for patients with life-limiting disease experiencing refractory symptoms. The EAPC therefore developed 2009 a framework on palliative sedation. A revision was needed due to new evidence from literature, ongoing debate and criticism of methodology, terminology and applicability. AIM: To provide evidence- and consensus-based guidance on palliative sedation for healthcare professionals involved in end-of-life care, for medical associations and health policy decision-makers. DESIGN: Revision between June 2020 and September 2022 of the 2009 framework using a literature update and a Delphi procedure. SETTING: European. PARTICIPANTS: International experts on palliative sedation (identified through literature search and nomination by national palliative care associations) and a European patient organisation. RESULTS: A framework with 42 statements for which high or very high level of consensus was reached. Terminology is defined more precisely with the terms suffering used to encompass distressing physical and psychological symptoms as well as existential suffering and refractory to describe the untreatable (healthcare professionals) and intolerable (patient) nature of the suffering. The principle of proportionality is introduced in the definition of palliative sedation. No specific period of remaining life expectancy is defined, based on the principles of refractoriness of suffering, proportionality and independent decision-making for hydration. Patient autonomy is emphasised. A stepwise pharmacological approach and a guidance on hydration decision-making are provided. CONCLUSIONS: This is the first framework on palliative sedation using a strict consensus methodology. It should serve as comprehensive and soundly developed information for healthcare professionals.

Report on palliative sedation medication usage: a survey of palliative care experts in Eight European countries.

BACKGROUND: The practice of palliative sedation continues to raise ethical questions among people, which in turn leads to its varied acceptance and practice across regions. As part of the Palliative Sedation European Union (EU) project, the aim of the present study was to determine the perceptions of palliative care experts regarding the practice of palliative sedation in eight European countries (The Netherlands, Belgium, Germany, UK, Italy, Spain, Hungary, and Romania). METHODS: A specifically designed survey, including questions on the most frequently used medications for palliative sedation, their availability per countries and settings, and the barriers and facilitators to the appropriate practice of palliative sedation was sent to expert clinicians involved and knowledgeable in palliative care in the indicated countries. A purposive sampling strategy was used to select at least 18 participating clinicians per consortium country. Descriptive statistical analysis was conducted on the survey data. RESULTS: Of the 208 expert clinicians invited to participate, 124 participants completed the survey. Midazolam was perceived to be the most frequently used benzodiazepine in all eight countries. 86% and 89% of expert clinicians in Germany and Italy, respectively, perceived midazolam was used "almost always", while in Hungary and Romania only about 50% or less of the respondents perceived this. Levomepromazine was the neuroleptic most frequently perceived to be used for palliative sedation in the Netherlands, Spain, Germany, and the United Kingdom. Between 38- 86% of all eight countries´ expert clinicians believed that opioid medications were "almost always" used during palliative sedation. The perceived use of IV hydration and artificial nutrition "almost always" was generally low, while the country where both IV hydration and artificial nutrition were considered to be "very often" given by a third of the expert clinicians, was in Hungary, with 36% and 27%, respectively. CONCLUSIONS: Our study provides insight about the differences in the perceived practice of medication during palliative sedation between eight European countries. In countries where palliative care services have been established longer perceptions regarding medication use during palliative sedation were more in line with the recommended European guidelines than in Central and Eastern European countries like Romania and Hungary.

Palliative care progress in Benin: a situation analysis using the WHO development indicators.

CONTEXT: Palliative care (PC) in most African countries remains under-assessed. Benin has piloted the implementation of a set of indicators proposed by the WHO to measure PC development. OBJECTIVES: To examine the current status of PC in Benin. METHODS: A workshop with stakeholders was organized to assess the WHO indicators in the Beninese context. Indicators were rated based on relevance and feasibility, data sources were agreed upon, and a survey was adapted. Data were collected between March and May 2023. RESULTS: There is emerging community involvement in PC through the presence of patients' rights promoters, as well as a political commitment expressed in the National PC strategy, the inclusion of PC services in the list of basic health services, and an assigned national authority -within the Ministry of Health-responsible for PC. Although no PC-oriented research has been documented, the celebration of the National PC Conference represents the first step to ground PC delivery in evidence. The reported annual consumption of opioids is 0.18 (ME) milligrams per capita, 34% of healthcare establishments have essential medicines for pain and PC, and 16.5% of patients with palliative needs have access to oral morphine. To date, no medical or paramedical schools offer PC training, and there is no official specialization in palliative medicine for doctors. PC is provided by 11 specialist teams (0.08/100,000 inhabitants), none of which provides pediatric care. CONCLUSION: Despite growing political, professional, and community commitments to palliative care, there are challenges in education, research, essential medicines, and access to PC services.

Regulations on palliative sedation: an international survey across eight European countries.

BACKGROUND: Palliative sedation is a commonly accepted medical practice. This study aims to clarify how palliative sedation is regulated in various countries and whether this may impact its practice. METHODS: An online survey requesting regulations on palliative sedation was conducted in Belgium, Germany, Hungary, Italy, The Netherlands, Spain, Romania and the UK. Purposive sampling strategy was used to identify clinicians from different medical fields and legal experts for each country. Regulations were analyzed using the principles of the European Association for Palliative Care Framework on palliative sedation. Country reports describing how palliative sedation is regulated were elaborated. RESULTS: One hundred and thirty-nine out of 223 (62%) participants identified 31 laws and other regulations affecting palliative sedation. In Spain, 12 regional laws recognize palliative sedation as a right of the patient at the end of life when there are refractory symptoms. In Italy, the law of informed consent and advance directives specifically recognizes the doctor can use deep sedation when there are refractory symptoms. There are also general medical laws that, while not explicitly referring to palliative sedation, regulate sedation-related principles: the obligation of doctors to honour advance directives, informed consent, the decision-making process and the obligation to document the whole process. In Germany, the Netherlands and the UK, palliative sedation is also regulated through professional guidelines that are binding as good practice with legal significance. CONCLUSIONS: Palliative sedation is considered in the general law of medical practice, in laws regarding the patient's autonomy, and through professional guidelines.

Palliative care in the Eastern Mediterranean: comparative analysis using specific indicators.

BACKGROUND: Monitoring the development of palliative care (PC) illustrates the capacity of health systems to respond to the needs of people experiencing serious health-related suffering. AIM: To analyse comparatively the situation of PC in the countries of the Easter Mediterranean region using context-specific indicators. METHOD: An online questionnaire with 15 context-specific PC indicators investigating service provision, use of medicines, policy, education, and vitality was designed. Authors Institution 1 nominated in-country experts to complete the survey. Data were analysed using a comparative description of indicators per domain and a multivariate analysis. RESULTS: In-country experts were identified in 17/22 countries. 12/17 contributed to the survey. In total, 117 specialized PC services were identified. Specialized services per population ranges from 0.09 per 100,000 inhabitants in Lebanon and Saudi Arabia, Qatar and Kuwait; to zero services in the Occupied Palestinian Territories. On average, opioid consumption was 2.40 mg/capita/year. National PC strategies were reported in nine countries. In six countries, PC is officially accredited either as a specialty or sub-specialty, and PC mandatory courses are implemented in 36% of medical schools and 46% of nursing schools. National PC associations were documented in six countries. A higher pattern of development was identified in Jordan, Kuwait, Saudi Arabia, Oman, Lebanon, Qatar. CONCLUSIONS: Despite a higher development in the Arabian Peninsula, the region is characterised by a very low provision of specialized PC services and opioid consumption. Policy improvements represent an opportunity to improve access to PC.

Evaluating the integration of palliative care in national health systems: an indicator rating process with EAPC task force members to measure advanced palliative care development.

BACKGROUND: Palliative care (PC) development cannot only be assessed from a specialized provision perspective. Recently, PC integration into other health systems has been identified as a component of specialized development. Yet, there is a lack of indicators to assess PC integration for pediatrics, long-term care facilities, primary care, volunteering and cardiology. AIM: To identify and design indicators capable of exploring national-level integration of PC into the areas mentioned above. METHODS: A process composed of a desk literature review, consultation and semi-structured interviews with EAPC task force members and a rating process was performed to create a list of indicators for the assessment of PC integration into pediatrics, long-term care facilities, primary care, cardiology, and volunteering. The new indicators were mapped onto the four domains of the WHO Public Health Strategy. RESULTS: The literature review identified experts with whom 11 semi-structured interviews were conducted. A total of 34 new indicators were identified for national-level monitoring of palliative care integration. Ten were for pediatrics, five for primary care, six for long-term care facilities, seven for volunteering, and six for cardiology. All indicators mapped onto the WHO domains of policy and education while only pediatrics had an indicator that mapped onto the domain of services. No indicators mapped onto the domain of use of medicines. CONCLUSION: Meaningful contributions are being made in Europe towards the integration of PC into the explored fields. These efforts should be assessed in future regional mapping studies using indicators to deliver a more complete picture of PC development.

Trends analysis of specialized palliative care services in 51 countries of the WHO European region in the last 14 years.

BACKGROUND: Service provision is a key domain to assess national-level palliative care development. Three editions of the European Association for Palliative Care (EAPC) Atlas of Palliative Care monitored the changes in service provision across Europe since 2005. AIM: To study European trends of specialized service provision at home care teams, hospital support teams, and inpatient palliative care services between 2005 and 2019. DESIGN: Secondary analysis was conducted drawing from databases on the number of specialized services in 2005, 2012, and 2019. Ratios of services per 100,000 inhabitants and increase rates on number of services for three periods were calculated. Analysis of variance (ANOVA) analyses were conducted to determine significant changes and chi-square to identify countries accounting for the variance. Income-level and sub-regional ANOVA analysis were undertaken. SETTING: 51 countries. RESULTS: Forty-two countries (82%) increased the number of specialized services between 2005 and 2019 with changes for home care teams (104% increase-rate), inpatient services (82%), and hospital support teams (48%). High-income countries showed significant increase in all types of services (p < 0.001), while low-to-middle-income countries showed significant increase only for inpatient services. Central-Eastern European countries showed significant improvement in home care teams and inpatient services, while Western countries showed significant improvement in hospital support and home care teams. Home care was the most prominent service in Western Europe. CONCLUSION: Specialized service provision increased throughout Europe, yet ratios per 100,000 inhabitants fell below the EAPC recommendations. Western Europe ratios' achieved half of the suggested services, while Central-Eastern countries achieved only a fourth. High-income countries and Western European countries account for the major increase. Central-Eastern Europe and low-to-middle-income countries reported little increase on specialized service provision.

Palliative care in Africa: a scoping review from 2005-16.

Since the last comprehensive review on the development of national palliative care in Africa was undertaken 12 years ago, in 2005, we did a scoping review of peer-reviewed, published articles on palliative care development between 2005-16 for each African country. The scoping review was conducted by assessing the medical literature and including local expert recommendations of suggested articles. We did a basic quality assessment of the articles using the journals' impact factor, journal quartile, and the number of citations as suitable metrics for quality consideration. Articles published in English, Spanish, Portuguese, and French that mentioned at least one dimension of WHO's palliative care public health strategy (implementation of services, education, policies, or medicine availability) and vitality (activity by professionals or advocates) were included. Of the 518 articles found, 49 met the inclusion criteria. Information on 26 (48%) of 54 African countries was found. Most services were concentrated in Kenya, South Africa, and Uganda, and 14 (26%) countries showed an increase in services during this timeframe. Stand-alone palliative care policies exist in Malawi, Mozambique, Rwanda, Swaziland, Tanzania, and Zimbabwe. Postgraduate diplomas in palliative care are available in Kenya, South Africa, Uganda, and Tanzania. Restricted access to opioids, prescriber restriction laws, and a low prevalence of morphine use remain common barriers to adequate palliative care provision. Although information on palliative care is unevenly distributed, the available information showed an increased development of palliative care services in a subset of African countries. Despite this growth, however, there is still minimal to no identified palliative care development in most African countries.

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.

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

BACKGROUND: 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. AIM: To provide an overview of the barriers to more widespread palliative care integration in the United States. DESIGN AND DATA SOURCES: 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. RESULTS: 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. CONCLUSION: 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.

Policy on palliative care in the WHO European region: an overview of progress since the Council of Europe's (2003) recommendation 24.

BACKGROUND: With the goal of achieving greater unity and coherence, the Council of Europe developed a national palliative care (PC) policy framework-Recommendation (2003) 24. Although directed at member states, the policy spread to the wider World Health Organisation (WHO) European Region. This article aims to present the current situation relating to national PC health policies in European countries. METHODS: A cross-sectional survey was conducted in 53 European countries of the WHO European Region. Relevant data reported (i) the existence of official documents concerning the provision of PC; (ii) the role of health departments and policymakers in the evaluation of PC provision and (iii) the availability of financial resources for PC provision. RESULTS: In total, 46/53 (87%) EU and non-EU countries responded. PC legislation is established in 20 (71%) EU and nine (50%) non-EU countries. A total of 12 (43%) EU countries possess a PC plan or strategy in comparison with six (33%) non-EU countries. Individuals from Departments of Health and designated policymakers have established collaborative PC efforts. Quality systems have been initiated in 15 (54%) EU and four (22%) non-EU countries. Significant differences were not found in the reporting of payments for PC services between European regions. CONCLUSION: An improvement in national PC policy in both EU and non-EU countries was observed. Future priorities include potential initiatives to improve relationships with policymakers, establish quality control programmes and ensure financial support for PC.

Integrated palliative care in the Spanish context: a systematic review of the literature.

BACKGROUND: Integrated palliative care (IPC) involves bringing together administrative, organisational, clinical and service aspects in order to achieve continuity of care between all actors involved in the care network of patients receiving palliative care (PC) services. The purpose of this study is to identify literature on IPC in the Spanish context, either in cancer or other advanced chronic diseases. METHODS: Systematic review of the literature about IPC published in Spain between 1995 and 2013. Sources searched included PubMed, Cochrane Library, Cinahl, the national palliative care Journal (Medicina Paliativa), and Google. Evidence on IPC in care models, pathways, guidelines and other relevant documents were searched. Additionally, data were included from expert sources. Elements of IPC were considered based on the definition of IPC and the Emmanuel´s IPC tool. The main inclusion criterion was a comprehensive description of PC integration. RESULTS: Out of a total of 2,416 titles screened, 49 were included. We found two models describing IPC interventions achieving continuity and appropriateness of care as a result, 12 guidelines or pathways (most of them with a general approach including cancer and non-cancer and showing a theoretical IPC inclusion as measured by Emmanuel's tool) and 35 other significant documents as for their context relevance (17 health strategy documents, 14 analytical studies and 4 descriptive documents). These last documents comprised respectively: regional and national plans with an IPC inclusion evidence, studies focused on IPC into primary care and resource utilisation; and descriptions of fruitful collaboration programmes between PC teams and oncology departments. CONCLUSIONS: The results show that explications of IPC in the Spanish literature exist, but that there is insufficient evidence of its impact in clinical practice. This review may be of interest for Spanish-speaking countries and for others seeking to know the status of IPC in the literature in their home nations.

Towards integration of palliative care in patients with chronic heart failure and chronic obstructive pulmonary disease: a systematic literature review of European guidelines and pathways.

BACKGROUND: Despite the positive impact of Palliative Care (PC) on the quality of life for patients and their relatives, the implementation of PC in non-cancer health-care delivery in the EU seems scarcely addressed. The aim of this study is to assess guidelines/pathways for integrated PC in patients with advanced Chronic Heart Failure (CHF) and Chronic Obstructive Pulmonary Disease (COPD) in Europe via a systematic literature review. METHODS: Search results were screened by two reviewers. Eligible studies of adult patients with CHF or COPD published between 01/01/1995 and 31/12/2013 in Europe in 6 languages were included. Nine electronic databases were searched, 6 journals were hand-searched and citation tracking was also performed. For the analysis, a narrative synthesis was employed. RESULTS: The search strategy revealed 26,256 studies without duplicates. From these, 19 studies were included in the review; 17 guidelines and 2 pathways. 18 out of 19 focused on suffering reduction interventions, 13/19 on a holistic approach and 15/19 on discussions of illness prognosis and limitations. The involvement of a PC team was mentioned in 13/19 studies, the assessment of the patients' goals of care in 12/19 and the advance care planning in 11/19. Only 4/19 studies elaborated on aspects such as grief and bereavement care, 7/19 on treatment in the last hours of life and 8/19 on the continuation of goal adjustment. CONCLUSION: The results illustrate that there is a growing awareness for the importance of integrated PC in patients with advanced CHF or COPD. At the same time, however, they signal the need for the development of standardized strategies so that existing barriers are alleviated.

To what degree is palliative care integrated in guidelines and pathways for adult cancer patients in Europe: a systematic literature review.

BACKGROUND: Palliative Care (PC) aims to improve the quality of life for patients with cancer and their families and its benefits have been demonstrated by several studies. The objective of this systematic review is to assess the integration of PC in the content of guidelines/pathways of adult cancer patients in Europe. METHODS: We included studies of adult patients with cancer published from 01/01/1995 and 31/12/2013 in Europe in six languages. We searched nine electronic databases, hand-searched six journals and also performed citation tracking. Studies were ranked using Emanuel's Integrated Palliative Care (IPC) criteria, a tool containing 11 domains to assess PC content in guidelines. Two reviewers screened the results and narrative synthesis has been employed. RESULTS: We identified a total of 28,277 potentially relevant articles from which 637 were eligible for full-text screening. The final review included 60 guidelines and 14 pathways. Eighty percent (80%) of the guidelines/pathways emphasize a holistic approach and 66% focus on PC interventions aimed at reducing suffering. Fifty seven percent (57%) did not discuss referral criteria for PC. Of all studies, five fulfilled at least 10/11 IPC criteria. Differences existed with regard to the referral criteria for bereavement care and the continuous adjustment of goals of care. CONCLUSION: Overall, most of the identified guidelines/pathways highlighted the importance of the holistic approach of IPC. The studies that were found to fulfil at least 10/11 Emanuel's IPC criteria could serve as benchmarks of IPC.

Enhancing Global Development of Palliative Care: Insights from Country Experts on ATLANTES Observatory's Role.

Background: Despite a steady increase in palliative care (PC)-oriented research, authentic engagement of stakeholders with findings needs to be more used. Objective: This study aimed to explore how ATLANTES Observatory can effectively promote the global development of PC by engaging with stakeholders and addressing their specific needs and priorities. Design: An international e-survey among Observatory collaborators explored key audiences, best ways to reach them, and priority activities. Answers were evaluated according to respondents' roles (Academics, Policymakers, and clinicians) and toward impact on diverse key stakeholders. Correlation between respondents' roles with select products was studied. Results: One hundred fifty-five collaborators participated. The collaborators suggested addressing ATLANTES Global Observatory's activities to policymakers (5,6/7), professional associations (5,2/7), and health care practitioners (4,4/7). Preferred activity to reach all stakeholders is the use of websites and social networks, while particularly for policymakers, academics, and general practitioners, the conduction of atlases and articles stand out. Conclusions: Our study emphasizes prioritizing policymakers and all health care practitioners as key stakeholders in promoting PC and driving global development and integration into health care systems. By leveraging innovative web tools and social networks for dissemination, our aim is to extend the reach of our efforts beyond the PC community.

Region-specific macro-indicators for palliative care development in the Eastern Mediterranean Region: a Delphi study.

Background: The World Health Organization Office for the Eastern Mediterranean Region (WHO/EMRO), and the recently created palliative care experts network for the Eastern Mediterranean Region (EMR), decided to develop region-specific indicators for monitoring national palliative care development in the Region. Aims: To identify relevant and feasible macro-indicators for palliative care development for the EMR. Methods: Palliative care experts from the EMR were nominated and invited to complete a 2-round Delphi study to rate macro-indicators from previous studies and propose new ones based on the EMR regional characteristics. All indicators were assessed according to regional relevance (R) and feasibility (F). A content validity index (CVI) was calculated. Indicators with CVI ≥ 0.7/1, and scoring ≥ 7/9 for the R and F averages were selected. Results: Twelve of the 22 countries in the Region were represented in the study. In the first round, 11 indicators were selected and 13 new ones proposed. In the second round, 15 indicators matched R, F and CVI criteria. Top-scored indicators were: existence of a current national palliative care strategy (R = 8, F = 8, CVI = 1); ratio of specialized services (for adults and children) in the country per population (R = 8, F = 7, CVI = 1); allocation of funds for palliative care in the national health budget by the Ministry of Health or equivalent government agency (R = 8, F = 6, CVI = 1); education for prequalification of doctors/nurses (R = 8, F = 8, CVI = 0.9); and availability of morphine and other strong opioids (R =8, F = 8, CVI= 0.9). Conclusion: A baseline set of 15 region-specific indicators for measuring the development of palliative care were validated by experts in the EMR.

Development of an atlas of palliative care in the Eastern Mediterranean Region through a stakeholder participative process.

Background: The increasing number of people experiencing serious health-related suffering due to severe illness is an urgent issue in the WHO Eastern Mediterranean Region (EMR). Although palliative care can mitigate much of this suffering, its current development and indicators to measure progress remain unknown. Aims: To describe the development of the Atlas of palliative care in the Eastern Mediterranean Region 2021. Methods: Recently, the WHO Regional Office for the Eastern Mediterranean, together with a network of palliative care experts, identified the best indicators and collected data across the Region. These indicators include national palliative care strategies, number of specialized palliative care services per population, inclusion of palliative care in the health benefits package and national health budget, and the use of pain medication. These and other useful information form the Atlas of palliative care in the Eastern Mediterranean Region 2021. Results: The Atlas shows that provision of specialized palliative care services and pain medication in the Region is low. Several of the indicators suitable to the region are new and include the level of public awareness of palliative care, inclusion of palliative care in health insurance plans, availability of centres of excellence for palliative clinical care, and availability of grants to finance palliative care research. Conclusion: Adoption of favourable policies, educational initiatives, and the involvement of stakeholders, represent an opportunity for future development of palliative care in the EMR.

Review of European Guidelines on Palliative Sedation: A Foundation for the Updating of the European Association for Palliative Care Framework.

In 2009, the European Association for Palliative Care (EAPC) developed a framework on palliative sedation, acknowledging this practice as an important and ethically acceptable intervention of last resort for terminally ill patients experiencing refractory symptoms. Before and after that, other guidelines on palliative sedation have been developed in Europe with variations in terminology and concepts. As part of the Palliative Sedation project (Horizon 2020 Funding No. 825700), a revision of the EAPC framework is planned. The aim of this article is to analyze the most frequently used palliative sedation guidelines as reported by experts from eight European countries to inform the discussion of the new framework. The three most reported documents per country were identified through an online survey among 124 clinical experts in December 2019. Those meeting guideline criteria were selected. Their content was assessed against the EAPC framework on palliative sedation. The quality of their methodology was evaluated with the Appraisal Guideline Research and Evaluation (AGREE) II instrument. Nine guidelines were included. All recognize palliative sedation as a last-resort treatment for refractory symptoms, but the criterion of refractoriness remains a matter of debate. Most guidelines recognize psychological or existential distress as (part of) an indication and some make specific recommendations for such cases. All agree that the assessment should be multiprofessional, but they diverge on the expertise required by the attending physician/team. Regarding decisions on hydration and nutrition, it is proposed that these should be independent of those for palliative sedation, but there is no clear consensus on the decision-making process. Several weaknesses were highlighted, particularly in areas of rigor of development and applicability. The identified points of debate and methodological weaknesses should be considered in any update or revision of the guidelines analyzed to improve the quality of their content and the applicability of their recommendations.

Estimating the Number of Patients Receiving Specialized Palliative Care Globally in 2017.

CONTEXT: Palliative care is an emerging health-care service essential for every health-care system. Information on the current status of palliative care service delivery is needed to understand the gap between need for palliative care and current capacity to deliver. OBJECTIVES: To estimate the number of providers delivering palliative care worldwide and the patients they served in 2017. METHODS: Estimates were obtained from a sample of countries from each World Bank income group using typical case purposive sampling methods. Reliable data from the United States and eight additional countries were used for the high-income group. For low- and middle-income countries (LMICs), to determine an estimate of the number of patients served, 30 countries representative of palliative care service delivery in each region and income group were surveyed. RESULTS: Results from the mapping levels of palliative care development survey identified a total of approximately 25,000 palliative care service delivery teams globally. The total estimate of patients served in 2017 was approximately seven million. CONCLUSION: Significant disparities in palliative care access exist both by region and income group. The European and Pan-American regions had most while the Eastern Mediterranean, Southeast Asian, and African regions had least. Much more needs to be done to develop and deliver palliative care in LMICs where 80% of the need for palliative care exists. With about 70% of operating palliative care services in high-income countries and only 30% in LMICs, a major effort to develop palliative care in these settings is urgently needed.

Palliative Care Coverage across European National Health Systems: Proposal of a Synthetic Indicator.

BACKGROUND: The coverage of palliative care (PC) may be understood as a country's capacity to offer prevention and relief from serious health-related suffering in relation to an existing need. The aim of this study is to estimate European countries´ coverage capacities. METHOD: Secondary analysis of three indicators, including the number of specialized services (SSPC), integration capacity scores (ICS) and the PC needs. By means of a K-medians clustering supervised algorithm, three coverage profiles were obtained: (1) Advanced: countries with high ICS and SSPC, and low PC needs; (2) Limited: countries with low ICS and SSPC, and low PC needs; and (3) Low: countries with low ICS and SSPC and high PC needs. RESULTS: On average, the ratio of specialized services per population was 0.79 per 100,000 inhabitants, the average ICS was 19.62 and the average number of deceased patients with SHS per 100,000 inhabitants was 5.69. Twenty countries (41%) reached an advanced coverage profile. Nine countries (18%) demonstrated a limited coverage profile; and 20 countries (41%) fell under a low-coverage capacity. CONCLUSION: The level of palliative care coverage across Europe shows that 59% of European countries have either limited or very low availability of PC resources as regards their palliative care needs.