BACKGROUND: Interest in the topic of termination of life has been growing for 2 decades. After legalisation of active euthanasia and assisted suicide (EAS) in the Netherlands in 2002, movements to implement similar laws started in other European countries. However, many people objected to legalisation on the basis of the experiences in the Netherlands and as a matter of principal.
METHODS: This selected and focussed review presents the theoretical discussions about EAS and describes the respective parliamentary discussions in Germany and the data and experiences in the Netherlands. It also considers people with mental disorders in the context of termination-of-life services.
RESULTS: So far, only a few European countries have introduced legislation on EAS. Legalisation of EAS in the Netherlands resulted in an unexpectedly large increase in cases. The number of people with mental disorders who terminate their lives on request remains low.
CONCLUSIONS: Experience from the Netherlands shows that widening criteria for EAS has problematic consequences. KEY POINTS Termination of life on request, which a subgroup of people support, is a matter of ongoing debate. Because of several problematic aspects, including ethical considerations, only a few countries in the world allow active euthanasia or assisted suicide. Even if euthanasia is well regulated, legalising it can have problematic consequences that are difficult to control, such as an unwanted excessive increase in euthanasia cases. The well-documented experiences with the euthanasia law in the Netherlands serve as an example of what is to be expected when euthanasia is legalised. We need to pay close attention to the relationship between suicide and suicide prevention on the one hand and euthanasia acts and promotion of euthanasia on the other. Further ethical, psychological and legal research is needed. In particular, the role of palliative medicine in societies' approach to end-of-life care must be explored in much more detail.
BACKGROUND: The early integration of palliative care significantly improves quality of life for children with cancer. However, cultural, structural, and socioeconomic barriers can delay the integration of palliative care into cancer care, particularly in low-income and middle-income countries. To date, little is known regarding the timing of and barriers to palliative care integration in Eurasia.
METHODS: The Assessing Doctors' Attitudes on Palliative Treatment (ADAPT) survey evaluates physician perceptions regarding palliative care integration into pediatric oncology in Eurasia. This evidence-based survey was adapted to the regional context; iteratively reviewed by US and regional panelists; and piloted in English, Russian, and Mongolian. After distribution to physicians caring for children with cancer, statistical analysis was complemented by qualitative analysis of open-ended responses.
RESULTS: A total of 424 physician responses were received from 11 countries in the Eurasian region. Study findings demonstrated wide variability in access to palliative care experts across countries (18%-96%), with the majority of providers (64%) reporting that the initial palliative care consultation typically occurs when curative options are no longer available. Providers desired an earlier initial palliative care consultation than what currently occurs in their setting (P < .001). Primary barriers to timely consultation included limited access to palliative care services and specialists, lack of physician education, and perceived family resistance.
CONCLUSIONS: The current study is the first to identify physician perceptions of the delayed timing of palliative care integration into childhood cancer care and associated barriers in Eurasia. These findings will inform the development of targeted interventions to mitigate local structural and cultural barriers to access and facilitate earlier palliative care integration in the region.
INTRODUCTION: The collaboration between palliative care and neurology has developed over the last 25 years and this study aimed to ascertain the collaboration between the specialties across Europe.
METHODS: This online survey aimed to look at collaboration across Europe, using the links of the European Association for Palliative Care and the European Academy of Neurology.
RESULTS: 298 people completed the survey-178 from palliative care and 120 from neurology from over 20 countries across Europe. They reported that there was good collaboration in the care for people with amyotrophic lateral sclerosis and cerebral tumours but less for other progressive neurological diseases. The collaboration included joint meetings and clinics and telephone contacts. All felt that the collaboration was helpful, particularly for maintaining quality of life, physical symptom management, psychological support and complex decision making, including ethical issues.
DISCUSSION: The study shows evidence for collaboration between palliative care and neurology, but with the need to develop this for all neurological illness, and there is a need for increased education of both areas.
OBJECTIVES: PACE Steps to Success is a 1-year train-the-trainer program aiming to integrate nonspecialist palliative care into nursing homes via staff education and organizational support. In this study, we aimed to explore whether this program resulted in changes in residents' hospital use and place of death.
DESIGN: Secondary analysis of the PACE cluster randomized controlled trial (ISRCTN14741671). Data were collected on deaths over the previous 4 months via questionnaires at baseline and postintervention.
SETTING AND PARTICIPANTS: Questionnaires were completed by the nurse/care-assistant most involved from 78 nursing homes in 7 European Union countries.
MEASURES: We measured number of emergency department visits, hospital admissions, length of hospital stay, and place of death. Baseline and postintervention scores between intervention and control groups were compared, and we conducted exploratory mixed-model analyses. We collected 551 out of 610 questionnaires at baseline and 984 out of 1178 at postintervention in 37 intervention and 36 control homes.
RESULTS: We found no statistical significant effects of the program on emergency department visits [odds ratio (OR) = 1.38, P = .32], hospital admissions (OR = 0.98, P = .93), length of hospital stay (geometric mean difference = 0.85, P = .44), or place of death (OR = 1.08, P = .80).
CONCLUSIONS AND IMPLICATIONS: We found no effect of the PACE program on either hospital use in the last month of life or place of death. Although this may be related to implementation problems in some homes, the program might also require a more specific focus on managing acute end-of-life situations and a closer involvement of general practitioners or specialist palliative care services to influence hospital use or place of death.
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.
Background: the World Health Organization (WHO) advocates for early integration of palliative care for all children with life-threatening illness. Provider awareness and misperceptions, however, can impede this imperative. In the Eurasian region, little is known about physician knowledge and perspectives on palliative care.
Methods: The Assessing Doctors' Attitudes on Palliative Treatment survey was developed as an evidence-based and culturally relevant assessment of physician perceptions on palliative care integration into childhood cancer care in Eurasia. Iteratively tested by American and Eurasian palliative care experts, the survey was culturally adapted, translated, and piloted in English, Russian, and Mongolian. The survey was distributed to physicians caring for children with cancer. Fifteen statements were scored in accordance with WHO guidelines to evaluate provider knowledge. The statistical analysis was complemented by a qualitative analysis of open-ended responses.
Results: This study received 424 responses from 11 countries in Eurasia. The mean alignment between provider perspectives and WHO recommendations was 70% (range, 7%-100%). Significant independent predictors of higher alignment included country, prior palliative care education, and greater experience with patient death. Respondents primarily described palliative care as end-o-life care and symptom management. Two-thirds of respondents (67%) reported not feeling confident about delivering at least 1 component of palliative care.
Conclusions: This is the first study assessing physician perspectives and knowledge of palliative care in Eurasia and reveals wide variability in alignment with WHO guidelines and limited confidence in providing palliative care. Study findings will inform targeted educational interventions, which must be tailored to the local political, economic, and cultural context.
This book examines the ethics of end of life care, focusing on the kinds of decisions that are commonly made in clinical practice. Specific attention is paid to the intensification of treatment for terminal symptoms, particularly pain relief, and the withdrawal and withholding of care, particularly life-saving or life-prolonging medical care. The book is structured into three sections. The first section contains essays examining end of life care from the perspective of moral theory and theology. The second sets out various conceptual terms and distinctions relevant to decision-making at the end of life. The third section contains chapters that focus on substantive ethical issues. This format not only provides for a comprehensive analysis of the ethical issues that arise in the context of end of life care but allows readers to effectively trace the philosophical, theological and conceptual underpinnings that inform their specific interests. This work will be of interest to scholars working in the area as well as clinicians, specialists and healthcare professionals who encounter these issues in the course of their practice.
Background/objectives: Opioids relieve symptoms in terminal care. We studied opioid underuse in long-term care facilities, defined as residents without opioid prescription despite pain and/or dyspnoea, 3 days prior to death.
Design and setting: In a proportionally stratified randomly selected sample of long-term care facilities in six European Union countries, nurses and long-term care facility management completed structured after-death questionnaires within 3 months of residents’ death.
Measurements: Nurses assessed pain/dyspnoea with Comfort Assessment in Dying with Dementia scale and checked opioid prescription by chart review. We estimated opioid underuse per country and per symptom and calculated associations of opioid underuse by multilevel, multivariable analysis.
Results: nurses’ response rate was 81.6%, 95.7% for managers. Of 901 deceased residents with pain/dyspnoea reported in the last week, 10.6% had dyspnoea, 34.4% had pain and 55.0% had both symptoms. Opioid underuse per country was 19.2% (95% confidence interval: 12.9–27.2) in the Netherlands, 25.2% (18.3–33.6) in Belgium, 29.3% (16.9–45.8) in England, 33.7% (26.2–42.2) in Finland, 64.6% (52.0–75.4) in Italy and 79.1% (71.2–85.3) in Poland (p < 0.001). Opioid underuse was 57.2% (33.0–78.4) for dyspnoea, 41.2% (95% confidence interval: 21.9–63.8) for pain and 37.4% (19.4–59.6) for both symptoms (p = 0.013). Odds of opioid underuse were lower (odds ratio: 0.33; 95% confidence interval: 0.20–0.54) when pain was assessed.
Conclusion: Opioid underuse differs between countries. Pain and dyspnoea should be formally assessed at the end-of-life and taken into account in physicians orders.
BACKGROUND: Research requires high-quality ethical and governance scrutiny and approval. However, when research is conducted across different countries, this can cause challenges due to the differing ethico-legal framework requirements of ethical boards. There is no specific guidance for research which does not involve non-medicinal products.
AIM: To describe and address differences in ethical and research governance procedures applied by research ethics committees for non-pharmaceutical palliative care studies including adult participants in collaborative European studies.
DESIGN: An online survey analysed using descriptive statistics.
SETTING/PARTICIPANTS: Eighteen principal investigators in 11 countries conducting one of three European-funded studies.
RESULTS: There was variation in practice including whether ethical approval was required. The time to gain full approvals differed with the United Kingdom having governance procedures that took the longest time. Written consent was not required in all countries nor were data safety monitoring committees for trials. There were additional differences in relation to other data management issues.
CONCLUSION: Researchers need to take the differences in research approval procedures into account when planning studies. Future research is needed to establish European-wide recommendations for policy and practice that dovetail ethical procedures and enhance transnational research collaborations.
OBJECTIVES: The number of older people dying in long-term care facilities (LTCFs) is increasing globally, but care quality may be variable. A framework was developed drawing on empirical research findings from the Palliative Care for Older People (PACE) study and a scoping review of literature on the implementation of palliative care interventions in LTCFs. The PACE study mapped palliative care in LTCFs in Europe, evaluated quality of end-of-life care and quality of dying in a cross-sectional study of deceased residents of LTCFs in 6 countries, and undertook a cluster-randomized control trial that evaluated the impact of the PACE Steps to Success intervention in 7 countries. Working with the European Association for Palliative Care, a white paper was written that outlined recommendations for the implementation of interventions to improve palliative and end-of-life care for all older adults with serious illness, regardless of diagnosis, living in LTCFs. The goal of the article is to present these key domains and recommendations.
DESIGN: Transparent expert consultation.
SETTING: International experts in LTCFs.
PARTICIPANTS: Eighteen (of 20 invited) international experts from 15 countries participated in a 1-day face-to-face Transparent Expert Consultation (TEC) workshop in Bern, Switzerland, and 21 (of 28 invited) completed a follow-up online survey.
METHODS: The TEC study used (1) a face-to-face workshop to discuss a scoping review and initial recommendations and (2) an online survey.
RESULTS: Thirty recommendations about implementing palliative care for older people in LTCFs were refined during the TEC workshop and, of these, 20 were selected following the survey. These 20 recommendations cover domains at micro (within organizations), meso (across organizations), and macro (at national or regional) levels addressed in 3 phases: establishing conditions for action, embedding in everyday practice, and sustaining ongoing change.
CONCLUSIONS AND IMPLICATIONS: We developed a framework of 20 recommendations to guide implementation of improvements in palliative care in LTCFs.
The purpose of this article is to analyze the main medical, legal, and ethical issues and challenges of euthanasia in the digital age. The methods that were used in this study are historical, logical, empirical, as well as comparative legal method for comparison of laws and practices of the EU and post-Soviet countries, including Ukraine. This choice determined by the fact that both groups of countries have common features and relations, while the features of their development affect approaches to regulating such sensitive and potentially open to abuse problems as euthanasia. There is no final legal answer as to whether to legalize, decriminalize or prohibit euthanasia in any of its forms. The features and legal terms of active and passive, voluntary and non-voluntary euthanasia and assisted suicide, especially for psychiatric and minor patients were researched, as well as conflicting arguments, which include individual autonomy, right to choose, the opportunity to get rid of suffering, as well as undermining the practice of palliative care, abuse in cases of vulnerable and dependent patients, moral burden on the doctors. The issue of control of the practice of euthanasia is complicated, given the extent to which it is possible to obtain informed consent, establish criteria for suffering and hopelessness, check the persistence, conviction and validity of requests for euthanasia, especially in the digital era. The potential legislation and judicial practice should provide for strict and effective guarantees, respect for the beliefs of each person and the right not to participate in any contentious practices, the balance of human rights and social values.
This paper addresses the stories of volunteers in hospice and palliative care (HPC) from eight European countries. The aims of the paper are to explore the experiences of volunteers in HPC from their insider perspective, to understand why volunteers choose to work in this field and to understand what it means to them to be involved in palliative care in this way. Stories were collected by the European Association for Palliative Care (EAPC) Task Force for Volunteering contacts in each of the eight countries. The majority of stories (n = 32) came from volunteers involved in different settings including adult patient's homes, hospices, hospitals and care homes. Twenty volunteers were female, six were male, and ten did not give their gender. Stories were translated into English, and a qualitative framework analysis was performed. Volunteers were asked two questions: 'What do you do as a volunteer?' 'What does volunteering mean to you?' Three themes were identified from the data: (i) What volunteers do (ii) How volunteers approach their work and (iii) What working in HPC means to volunteers. The analysis revealed that common approaches to addressing and describing HPC volunteering in terms of tasks and roles could be expanded. To volunteers, it is not about tasks, but about a part of their life, the impact upon which can be significant. The results of this paper, therefore, add to the understanding of volunteers, in the sense of giving attention, being with, and of compassion as a community resource to patients and families in difficult situations. Theories about presence and presencing might have value in further underpinning this contribution to palliative care. Understanding the extent and depth of the volunteers' experience will help to prevent the undervaluing of their contribution and increase the impact of their involvement.
Objective: Even when medical treatments are limited, supporting patients’ coping strategies could improve their quality of life. Greater understanding of patients’ coping strategies, and influencing factors, can aid developing such support. We examined the prevalence of coping strategies and associated variables.
Methods: We used sociodemographic and baseline data from the ACTION trial, including measures of Denial, Acceptance, and Problem-focused coping (COPE; Brief COPE inventory), of patients with advanced cancer from six European countries. Clinicians provided clinical information. Linear mixed models with clustering at hospital level were used.
Results: Data from 675 patients with stage III/IV lung (342, 51%) or stage IV colorectal (333, 49%) cancer were used; mean age 66 (10 SD) years. Overall, patients scored low on Denial and high on Acceptance and Problem-focused coping. Older age was associated with higher scores on Denial than younger age (ß = 0.05; CI[0.023; 0.074]), and patients from Italy (ß = 1.57 CI[0.760; 2.388]) and Denmark (ß = 1.82 CI[0.881; 2.750]) scored higher on Denial than patients in other countries.
Conclusions: Patients with advanced cancer predominantly used Acceptance and Problem-focused coping, and Denial to a lesser extent. Since the studied coping strategies of patients with advanced cancer vary between subpopulations, we recommend taking these factors into account when developing tailored interventions to support patients’ coping strategies.
As patients approach the end of life, they often experience a range of distressing symptoms and concerns such as pain, delirium, and breathlessness. Although most symptoms and concerns are amendable to pharmacological and/or nonpharmacological interventions, there may be some symptoms that are very difficult or impossible to treat or where available treatment options fail. These are called refractory symptoms because treatment (1) does not work, (2) the effects take too long to happen, or (3) the side effects are not acceptable to the patient. Refractory symptoms are not restricted to physical symptoms and, therefore, a multidimensional approach is needed to fully assess and manage the patient's condition. For example, existential suffering may be adding to the patient's physical suffering but can be particularly difficult to assess and manage. For this reason, the term intractable suffering is sometimes used. When conventional treatment options are no longer available and symptoms are considered refractory, the option of palliative sedation comes to the fore.
Cette ouvrage présente une réflexion autour du fait de mourir dans un contexte médical comme nouvelle pratique admises par les sociétés occidentales au XXIe siècle. L'auteur s'interroge sur le lien entre cet habitus et le déni global de la mort en Europe et en Amérique du Nord.
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.
Background: The PACE Steps to Success programme is a complex educational and development intervention to improve palliative care in nursing homes. Little research has investigated processes in the cross-cultural adaptation and implementation of interventions in palliative care across countries, taking account of differences in health and social care systems, legal and regulatory policies, and cultural norms. This paper describes a framework for the cross-cultural development and support necessary to implement such an intervention, taking the PACE Steps to Success programme as an exemplar.
Methods: The PACE Steps to Success programme was implemented as part of the PACE cluster randomised control trial in seven European countries. A three stage approach was used, a) preparation of resources; b) training in the intervention using a train-the-trainers model; and c) cascading support throughout the implementation. All stages were underpinned by cross-cultural adaptation, including recognising legal and cultural norms, sensitivities and languages. This paper draws upon collated evidence from minutes of international meetings, evaluations of training delivered, interviews with those delivering the intervention in nursing homes and providing and/or receiving support.
Results: Seventy eight nursing homes participated in the trial, with half randomized to receive the intervention, 3638 nurses/care assistants were identified at baseline. In each country, 1–3 trainers were selected (total n = 16) to deliver the intervention. A framework was used to guide the cross-cultural adaptation and implementation. Adaptation of three English training resources for different groups of staff consisted of simplification of content, identification of validated implementation tools, a review in 2 nursing homes in each country, and translation into local languages. The same training was provided to all country trainers who cascaded it into intervention nursing homes in local languages, and facilitated it via in-house PACE coordinators. Support was cascaded from country trainers to staff implementing the intervention.
Conclusions: There is little guidance on how to adapt complex interventions developed in one country and language to international contexts. This framework for cross-cultural adaptation and implementation of a complex educational and development intervention may be useful to others seeking to transfer quality improvement initiatives in other contexts.
Background: The Pontifical Academy for Life (PAV) is an academic institution of the Holy See (Vatican) which aims to develop and promote Catholic teachings on questions of biomedical ethics. Palliative care (PC) experts from around the world professing different faiths were invited by the PAV to develop strategic recommendations for the global development of PC ("PAL-LIFE group").
Design: Thirteen experts in PC advocacy participated in an online Delphi process. In four iterative rounds, participants were asked to identify the most significant stakeholder groups and then propose for each, strategic recommendations to advance PC. Each round incorporated the feedback from previous rounds until consensus was achieved on the most important recommendations. In the last step, the ad hoc group was asked to rank the stakeholders' groups by order of importance on a 13 points-scale and to propose suggestions for implementation. A cluster analysis provided a classification of the stakeholders in different levels of importance for PC development.
Results: Thirteen stakeholder groups and 43 recommendations resulted from the first round and, of those, 13 recommendations were chosen as the most important (one for each stakeholder group). Five groups had higher scores. The recommendation chosen for these top five groups were 1) Policy Makers: Ensure universal access to PC; 2) Academia: Offer mandatory PC courses to undergraduates; 3) Health care workers: PC professionals should receive adequate certification; 4) Hospitals and health care centers: Every healthcare center should ensure access to PC medicines, and 5) PC associations: National Associations should be effective advocates and work with their governments in the process of implementing international policy framework. Not chosen recommendations for both this higher scored group, plus for the remaining eight groups, are also presented in order of importance.
Conclusion: The white paper represents a position statementof the PAV with regards to advocacy and promotion of PC.
Cet atlas présente les ressources pays par pays en matière de soins palliatifs : services pour adultes ou enfants, lits dédiés, composition et nombre d'équipes, tendance et objectifs des politiques nationales de santé des pays.
Background: In many countries, the consumption of opioid medicines is too low to meet population needs. Discussions within the Access To Opioid Medication in Europe project indicated that there may be significant differences in the perception of barriers for their adequate use, depending on the stakeholders.
Aim: The aim of this study was to examine the perception of barriers and their impact concerning opioid medicines, comparing policy makers, healthcare professionals working in the field of pain management, palliative care or harm reduction and other stakeholders.
Design: Data were collected using a questionnaire partially constructed from existing surveys, reviewed for content validity by four experts and pilot-tested in Latvia.
Setting/participants: Participants of the Access to Opioid Medication in Europe national conferences were invited to complete the questionnaire. Stakeholder groups were compared using non-parametric rank-sum tests.
Results: In total, 199 participants (54%) in seven countries completed the questionnaire. Most frequently rated major barriers included lack of financial resources and inadequate knowledge, skills and training among policy makers (55%–66%). Overall, policy makers perceived issues less often as major barriers or having major impact (29% barrier, 32% impact) compared to other stakeholders (36%–42% barrier, 39%–51% impact). Significant differences were seen on several aspects. For example, excessive regulation or bureaucracy for prescribing was rated as having major impact by 55%–57% of healthcare professionals in contrast to only 20% of the policy makers (p = 0.002).
Conclusion: Multiple barriers may play an important role, partly depending on the perspective of the stakeholder involved. Hence, when addressing perceived barriers, it is important to include all relevant stakeholder groups. Only then, effective and widely supported solutions can be implemented.