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.
With the daily number of confirmed COVID-19 cases and associated deaths rising exponentially, social fabrics on a global scale are being worn by panic, uncertainty, fear, and other consequences of the health care crisis. Comprising more than half of the global health care workforce and the highest proportion of direct patient care time than any other health professional, nurses are at the forefront of this crisis. Throughout the evolving COVID-19 pandemic, palliative nurses will increasingly exercise their expertise in symptom management, ethics, communication, and end-of-life care, among other crucial skills. The literature addressing the palliative care response to COVID-19 has surged, and yet, there is a critical gap regarding the unique contributions of palliative nurses and their essential role in mitigating the sequelae of this crisis. Thus, the primary aim herein is to provide recommendations for palliative nurses and other health care stakeholders to ensure their optimal value is realized and to promote their well-being and resilience during COVID-19 and, by extension, in anticipation of future public health crises.
Background: The World Health Assembly urges members to build palliative care (PC) capacity as an ethical imperative. Nurses provide PC services in a variety of settings, including the home and may be the only health care professional able to access some disparate populations. Identifying current nursing services, resources, and satisfaction and barriers to nursing practice are essential to build global PC capacity.
Objective: To globally examine home health care nurses' practice, satisfaction, and barriers, regarding existing palliative home care provision.
Design: Needs assessment survey.
Setting/Subjects: Five hundred thirty-two home health care nurses in 29 countries.
Measurements: A needs assessment, developed through literature review and cognitive interviewing.
Results: Nurses from developing countries performed more duties compared with those from high-income countries, suggesting a lack of resources in developing countries. Significant barriers to providing home care exist: personnel shortages, lack of funding and policies, poor access to end-of-life or hospice services, and decreased community awareness of services provided. Respondents identified lack of time, funding, and coverages as primary educational barriers. In-person local meetings and online courses were suggested as strategies to promote learning.
Conclusions: It is imperative that home health care nurses have adequate resources to build PC capacity globally, which is so desperately needed. Nurses must be up to date on current evidence and practice within an evidence-based PC framework. Health care policy to increase necessary resources and the development of a multifaceted intervention to facilitate education about PC is indicated to build global capacity.
BACKGROUND: In recent decades, issues related to end-of-life care and advance care planning (ACP) have attracted popular attention. Advance care planning has been broadly discussed as one of the potential solutions to protect a patient's rights, autonomy, and dignity at the end of life. To better understand publishing on this topic, we conducted this study to demonstrate the worldwide research productivity, trends, and citations of ACP in the past 3 decades by bibliometric analysis.
METHODS: Articles published on ACP were retrieved from the Web of Science Core Collection database, and the subject terms included "advance directive," or "advance care planning."
RESULTS: Overall, 2126 publications on ACP were retrieved until January 22, 2019. North America, Western Europe, and Australia were the most productive regions. The top 15 countries published 95.9% of the total number of articles. The United States accounted for approximately three-fifths (61.0%) of all publications. When adjusted for population size, Australia had the highest number of articles per million persons (6.64), followed by the Netherlands (6.14) and Belgium (4.61). The most productive authors were Sudore (n = 37), Deliens (n = 29), and Green (n = 24).
CONCLUSIONS: The current study revealed that research in terms of publications on ACP has rapidly increased over the past 3 decades. Developed countries, especially the United States, were more concerned with the ACP research field than developing countries were.
Background: Despite technological innovations and continuous improvement in evidence-based treatments, mortality in the intensive care unit (ICU) remains high. Consequently, a large group of family members may be in need of, and could benefit from, bereavement follow-up support.
Aims and Objectives: To explore the elements, organization, and evaluation of ICU bereavement services in European countries. Specific objectives were to investigate: (a) the model of bereavement follow-up services (elements of support), (b) the workforce model (organization of staff), and (c) the evaluation model (evaluation strategies).
Design: This was a cross-sectional survey of conference delegates.
Methods: A paper-and-pen questionnaire, including a cover letter assuring the respondents of anonymity and confidentiality, was distributed to 250 delegates during the opening ceremony of the 2017 European federation of Critical Care Nurses associations Congress in Belfast. The questionnaire was developed from a previously validated tool describing bereavement care practices in ICUs, including questions about the content and organization of bereavement follow-up services. Frequencies were calculated using yes/no questions, and content analysis was applied in additional free-text comments.
Results: We received 85 responses from publicly employed nurses, mainly in mixed adult ICUs. Respondents were 48 (56.5%) bedside nurses, and the remaining respondents represented clinical nurse specialists, researchers, managers, or academic nurses. Bereavement follow up had existed for about 1 to 15 years. Important follow-up elements were: viewing the deceased in the unit, 77 (90.6%); providing follow-up information, 67 (79.8%); sending a letter of sympathy, 17 (20%); and calling the family to arrange a meeting, 27 (31%).
Conclusions: Bereavement follow up is common but variable in European ICUs. We recommend the development, implementation, and evaluation of evidence-based, but culture-specific, bereavement follow-up guidelines for European ICUs.
Relevance to clinical practice: More critical care nurses are realizing the need for bereavement follow-up guidelines. This paper provides an overview of common elements that might be considered.
Background: Despite growing interest from policy makers, researchers and activists in the global development of palliative care, there is still little science to underpin it. This study presents the methods deployed in the creation of a 'world map' of palliative care development. Building on two previous iterations, with improved rigour and taking into account reviewers' feedback, the aim of this recalibrated version of the study is to determine the level of palliative care development in 198 United Nations recognised countries in 2017, whilst ensuring comparability with previous versions. We present methods of data collection and analysis.
Methods and analysis: Primary data on the level of palliative care development in 2017 was collected from in-country experts through an online questionnaire and, where required, supplemented by published documentary sources and grey literature. Data relating to the total population of each country as well as per capita opioid consumption were derived from independent sources. Data analysis was conducted according to a new scoring system and algorithm developed by the research team.
Ethics and dissemination: The study was approved by the University of Glasgow College of Social Sciences Research Ethics Committee. Findings of the study will be disseminated in peer-reviewed journals, as a contribution to the second edition of the Global Atlas of Palliative Care at the End-of-Life, and via social media, including the Glasgow End of Life Studies Group blog and the project website.
Limitations of the study: There are potential biases associated with self-reporting by key in-country experts. In some countries, the identified key expert failed to complete the questionnaire in whole or part and data limitations were potentially compounded by language restrictions, as questionnaires were available only in three European languages. The study relied in part on data from independent sources, the accuracy of these data could not be verified.
BACKGROUND: The World Health Organisation (WHO) endorses integrated palliative care which has a significant impact on quality of life and satisfaction with care. Effective integration between hospices, palliative care services, hospitals and primary care services are required to support patients with palliative care needs. Studies have indicated that little is known about which aspects are regarded as most important and should be priorities for international implementation. The Integrated Palliative Care in cancer and chronic conditions (InSup-C) project, aimed to investigate integrated practices in Europe and to formulate requirements for effective palliative care integration. It aimed to develop recommendations, and to agree priorities, for integrated palliative care linked to the InSuP-C project.
METHODS: Transparent expert consultation was adopted at the approach used. Data were collected in two phases: 1) international transparent expert consultation using face-to-face roundtable discussions at a one day workshop in Brussels, and 2) via subsequent online cross-sectional survey where items were rated to indicate degree of agreement on their importance and ranked to indicate priority for implementation. Workshop discussions used content analysis to develop a list of 23 recommendations, which formed the survey questionnaire. Survey analysis used descriptive statistics and qualitative content analysis of open responses.
RESULTS: Thirty-six international experts in palliative care and cancer care, including senior clinicians, researchers, leaders of relevant international organisations and funders, were invited to a face-to-face workshop. Data were collected from 33 (19 men, 14 women), 3 declined. They mostly came from European countries (31), USA (1) and Australia (1). Twenty one of them also completed the subsequent online survey (response rate 63%). We generated 23 written statements that were grouped into the organisational constructs: macro (10), meso (6) and micro (7) levels of integration of palliative care. Highest priority recommendations refer to education, leadership and policy-making, medium priority recommendations focused on funding and relationship-building, and lower priority recommendations related to improving systems and infrastructure.
CONCLUSIONS: Our findings suggest that amongst a group of international experts there was overall good agreement on the importance of recommendations for integrated palliative care. Understanding expert's priorities is important and can guide practice, policymaking and future research.
Declarations on end-of-life issues are advocacy interventions that seek to influence policy, raise awareness and call others to action. Despite increasing prominence, they have attracted little attention from researchers. This study tracks the emergence, content, and purpose of declarations concerned with assisted dying and euthanasia, in the global context. The authors identified 62 assisted dying/euthanasia declarations covering 1974–2016 and analyzed them for originating organization, geographic scope, format, and stated viewpoint on assisted dying/euthanasia. The declarations emerged from diverse organizational settings and became more frequent over time. Most opposed assisted dying/euthanasia.
Individual differences that might moderate processes of value shifting during and after deliberating one’s own death remain largely unexplored. Two studies measured participants’ openness and relative intrinsic-to-extrinsic value orientation (RIEVO) before randomly assigning them to conditions in which they wrote about their own death or dental pain for 6 days, after which RIEVO was assessed again up to 12 days later. When participants confronted thoughts about their own death over a sustained period, high openness to experience helped them shift toward intrinsic values. Implications for understanding openness’ role in value reorientation from existential deliberation processes are discussed.
End-of-life cancer care has been criticized as frequently inappropriate and aggressive. Providing appropriate care to people with cancer is a public health priority. Quality indicators are considered a valid way to evaluate the appropriateness of end-of-life cancer care within a health care system. We conducted a population-level retrospective observational study of all cancer decedents in Belgium in 2012 to assess end-of-life care and risk factors for exposure to care. We linked eight full-population databases on health care use, cancer diagnoses, and demographic and socioeconomic variables. We used analysis of variance to examine factors associated with exposure to appropriate or inappropriate end-of-life cancer care. Of the 26,464 people in Belgium who died from cancer in 2012, 47 percent received specialist palliative care, and 30 percent died at home. In the last thirty days of life, 17 percent received chemotherapy, and 66 percent received diagnostic testing. For 17 percent, palliative care was initiated only in the last fourteen days of life. Our results suggest a need to focus policy on reducing aggressive and inappropriate care at the end of life and an opportunity to increase the proportion of people who receive specialist palliative care and die at home.
Background: Dementia is the most common neurological disorder worldwide and is a life-limiting condition, but very often is not recognised as such. People with dementia, and their carers, have been shown to have palliative care needs equal in extent to those of cancer patients. However, many people with advanced dementia are not routinely being assessed to determine their palliative care needs, and it is not clear why this is so.
Main Body: An interdisciplinary workshop on "Palliative Care in Neurodegeneration, with a focus on Dementia", was held in Cork, Ireland, in May 2016. The key aim of this workshop was to discuss the evidence base for palliative care for people with dementia, to identify 'gaps' for clinical research, and to make recommendations for interdisciplinary research practice. To lead the discussion throughout the day a multidisciplinary panel of expert speakers were brought together, including both researchers and clinicians from across Ireland and the UK. Targeted invitations were sent to attendees ensuring all key stakeholders were present to contribute to discussions. In total, 49 experts representing 17 different academic and practice settings, attended. Key topics for discussion were pre-selected based on previously identified research priorities (e.g. James Lind Alliance) and stakeholder input. Key discussion topics included: i. Advance Care Planning for people with Dementia; ii. Personhood in End-of-life Dementia care; iii. Topics in the care of advanced dementia at home. These topics were used as a starting point, and the ethos of the workshop was that the attendees could stimulate discussion and debate in any relevant area, not just the key topics, summarised under iv. Other priorities.
Conclusions: The care experienced by people with dementia and their families has the potential to be improved; palliative care frameworks may have much to offer in this endeavour. However, a solid evidence base is required to translate palliative care into practice in the context of dementia. This paper presents suggested research priorities as a starting point to build this evidence base. An interdisciplinary approach to research and priority setting is essential to develop actionable knowledge in this area.
As the global cancer burden grows, so too will global inequities in access to cancer and palliative care increase. This paper will describe the cancer and palliative care landscape relative to nursing practice, education, and research, and emerging global collaborations in the United States (U.S.), Turkey, and Malawi. It is imperative that nurses lead efforts to advance health and strengthen education in these high-need areas. Leaders within the University of Alabama at Birmingham School of Nursing, through a Pan American Health Organization/World Health Organization Nursing Collaborating Center, have initiated collaborative projects in cancer and palliative care between the U.S., Turkey, and Malawi to strengthen initiatives that can ultimately transform practice. These collaborations will lay a foundation to empower nurses to lead efforts to reduce the global inequities for those with cancer and other serious and life-limiting illnesses.
Bereavement is an inevitable event in our life. This paper employs the Taiwanese panel Survey of Health and Living Status of the Elderly (SHLSE) to evaluate the impact of losing a spouse on self-assessed health and subjective well-being measured by depression and life satisfaction. Propensity score matching methods are used to generate a hypothetical bereavement date and a weight for the non-bereaved to create a comparable non-bereaved cohort and a difference-in-differences (DiD) approach is used to estimate the impact of spousal bereavement.
The results show that spousal bereavement increases depression scale by 1.81 points but this increment decreases by 0.43 points every year after bereavement. It takes approximate 4 years to restore to the level prior to bereavement. We also examine the demographic and socioeconomic differences in the spousal bereavement impact and find that the spousal bereavement impact is greater on the bereaved in the higher income group in terms of self-assessed health and depression. Our results only represent a lower boundary of the possible impact of spousal bereavement on self-assessed health and subjective wellbeing due to data restrictions.
Purpose of review: Chronic breathlessness is common in patients with advanced illness who require palliative care. Achieving good symptom control can be challenging. More people with advanced illness live in low and middle income than in high-income countries, but they are much less likely to receive palliative care. Most of the emerging evidence for the palliative management of chronic breathlessness is from high-income countries. This review explores the context of chronic breathlessness in low-income settings, how evidence for control of chronic breathlessness might relate to these settings and where further work should be focused.
Recent findings: Systems for control of noncommunicable diseases (NCDs) in these low-income contexts are poorly developed and health services are often overwhelmed with high levels both of NCD and communicable disease. Multidisciplinary and holistic approaches to disease management are often lacking in these settings. Developing an integrated primary care approach to NCD management is increasingly recognized as a key strategy and this should include palliative care. Most evidence-based approaches to the control of chronic breathlessness could be adapted for use in these contexts
Summary: Hand held fans, breathing techniques, graded exercise and use of low-dose morphine can all be used in low-income settings particularly in the context of holistic care. Research is needed into the most effective ways of implementing such interventions and palliative care needs to be promoted as a fundamental aspect of NCD management.
Background: A feasibility evaluation of a comprehensive quality indicator set for palliative care identified the need for a minimal selection of these indicators to monitor quality of palliative care services with short questionnaires for the patients, caregivers, and family carers.
Objectives: To develop a minimal indicator set for efficient quality assessment in palliative care.
Design: A 2 round modified Research ANd Development corporation in collaboration with the University of California at Los Angeles (RAND/UCLA) expert consultation.
Setting/Patients: Thirteen experts in palliative care (professionals and patient representatives).
Measurements: In a home assignment, experts were asked to score 80 developed indicators for "priority" to be included in the minimal set on a scale from 0 (lowest priority) to 9 (highest priority). The second round consisted of a plenary meeting in which the minimal set was finalized.
Results: Thirty-nine of the 80 indicators were discarded, while 19 were definitely selected after the home assignment, and 22 were proposed for discussion during the meeting; 12 of these survived the selection round. The final minimal indicator set for palliative care consists of 5 indicators about the physical aspects of care; 6 about the psychosocial aspects of care; 13 about information, communication, and care planning; 5 about type of care; and 2 about continuity of care.
Conclusion: A minimal set of 31 indicators reflecting all the important issues in palliative care was created for palliative care services to assess the quality of their care in a quick and efficient manner. Additional topic-specific optional modules are available for more thorough assessment of specific aspects of care.
Background: In a previous article, we studied decisions to withhold or withdraw life-sustaining treatment (LST) taken between 1995 and 2001 in 31 French-speaking paediatric nephrology centres. Files were available for 18 of the 31 centres. A grid was used to analyse the criteria on which decisions were based, and the results were enriched by an analysis of interviews with the doctors at these centres (31 interviews with doctors from the 18 centres). The goal was to describe in detail and to specify the criteria on which decisions to withhold or withdraw LST were based, in cases extracted from the files. The second paper deals exclusively with the interviews with doctors and analyses their lifetime's experience and perception.
Methods: We carried out semi-directed interviews with nephrologists from all the paediatric nephrology centres in France and the French-speaking regions of Switzerland and Belgium.
Results: We interviewed 46 paediatric nephrologists. Most were aware that decisions relating to LST are necessary and based on the assessment of the child's quality of life. According to them, decisions are not based on scientific criteria, but on the capacity to accept handicap, the family's past experiences and the doctor's own projections. They report that their task is particularly difficult when their action may contribute to death (withdrawal of treatment or acceleration of the process). They feel that their duty is to help the families in the acceptance of the doctors' decision rather than to encourage their participation in the decision-making process (DMP).
Conclusions: This article shows that paediatric nephrologists differ in their opinions, mostly due to their own ethical convictions. This observation highlights the need to establish common rules taking into account the views held by doctors. This is the only way to establish an ethical code shared by professionals.
Background: Few studies have looked at how decisions are made to withhold or to withdraw potentially life-sustaining treatments (LST) in paediatric nephrology. The aim of this work was to evaluate such practices in all nephrology centres in French-speaking European countries, so that guidelines could be discussed and drawn up by professionals.
Methods: We used semi-directed interviews to question health care professionals prospectively. We also retrospectively analysed the medical files of all children (n = 50) for whom a decision to withhold or to withdraw LST had been made in the last 5 years. The doctors (n = 31) who had been involved in the decision-making process were interviewed.
Résults: All 31 of the French-speaking paediatric nephrology centres in Europe were included in this study. Of these, 18 had made decisions in the previous 5 years about withholding or withdrawing LST. Resultant quality of life, based on long-term living conditions, was the principal criterion used to make the decisions. Relational aspects of life and the child's prognosis were also considered. The decision-making processes were not always collective, even though interactions between doctors and the rest of the medical team seemed to be key elements to them. The parents' involvement in the decision-making process differed between centres.
Conclusions: The criteria used to decide whether to withhold or to withdraw LST are not standardized, and no specific guidelines exist.
Objective: To present the views of a representative sample of neonatal doctors and nurses in 10 European countries on the moral acceptability of active euthanasia and its legal regulation.
Design: A total of 142 neonatal intensive care units were recruited by census (in the Netherlands, Sweden, Hungary, and the Baltic countries) or random sampling (in France, Germany, Italy, Spain, and the United Kingdom); 1391 doctors and 3410 nurses completed an anonymous questionnaire (response rates 89% and 86% respectively).
Main outcome measure: The staff opinion that the law in their country should be changed to allow active euthanasia "more than now".
Results: Active euthanasia appeared to be both acceptable and practiced in the Netherlands, France, and to a lesser extent Lithuania, and less acceptable in Sweden, Hungary, Italy, and Spain. More then half (53%) of the doctors in the Netherlands, but only a quarter (24%) in France felt that the law should be changed to allow active euthanasia "more than now". For 40% of French doctors, end of life issues should not be regulated by law. Being male, regular involvement in research, less than six years professional experience, and having ever participated in a decision of active euthanasia were positively associated with an opinion favouring relaxation of legal constraints. Having had children, religiousness, and believing in the absolute value of human life showed a negative association. Nurses were slightly more likely to consider active euthanasia acceptable in selected circumstances, and to feel that the law should be changed to allow it more than now.
Conclusions: Opinions of health professionals vary widely between countries, and, even where neonatal euthanasia is already practiced, do not uniformly support its legalisation.
Les résultats de cette étude pilote soutiennent l'hypothèse selon laquelle les fournisseurs de soins palliatifs ont des niveaux variables d'auto-compétence. Améliorer la formation pour construire des compétences en soins palliatifs que ce soit chez l'adulte ou chez l'enfant en Afrique sub-saharienne est recommandé.