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Words matter, especially in times of crisis. This article analyses the complexities of political discourse on vulnerability by considering the case of the Dutch COVID-19 response. Our study finds that the framing of vulnerability as a predetermined and naturalised condition, linked to old age and pre-existing medical conditions, draws attention away from aspects of precarisation tied to economic position, social class, cultural background and living conditions. This rhetorical strategy can be understood as a practice of de-responsibilisation through which attention is rhetorically diverted from the way(s) in which political authorities are implicated in producing, exacerbating or failing to mitigate vulnerabilities.

Background: National clinical guidelines have been developed internationally to reduce variations in clinical practices and promote the quality of palliative care. In The Netherlands, there is considerable variability in the organisation and care processes of inpatient palliative care, with three types of hospices – Volunteer-Driven Hospices (VDH), Stand-Alone Hospices (SAH), and nursing home Hospice Units (HU). Aim: This study aims to examine clinical practices in palliative care through different hospice types and identify variations in care. Methods: Retrospective cohort study utilising clinical documentation review, including patients who received inpatient palliative care at 51 different hospices and died in 2017 or 2018. Care provision for each patient for the management of pain, delirium and palliative sedation were analysed according to the Dutch national guidelines. Results: 412 patients were included: 112 patients who received treatment for pain, 53 for delirium, and 116 patients underwent palliative sedation therapy. Care was provided in accordance with guidelines for pain in 32%, 61% and 47% (P = .047), delirium in 29%, 78% and 79% (P = .0016), and palliative sedation in 35%, 63% and 42% (P = .067) of patients who received care in VDHs, SAHs and HUs respectively. When all clinical practices were considered, patient care was conducted according to the guidelines for 33% of patients in VDHs, 65% in SAHs, and 50% in HUs (P < .001). Conclusions: The data demonstrate that care practices are not standardised throughout Dutch hospices and exhibit significant variations between type of hospice.

Background Family involvement in nursing homes is generally recognized as highly valuable for residents, staff and family members. However, family involvement continues to be challenging in practice. Aim To contribute to the dialogue about family involvement and develop strategies to improve family involvement in the nursing home. Methods This interpretative synthesis consists of a thematic analysis and care ethical interpretation of issues regarding family involvement from the perspective of families in nursing homes reported in literature. Findings This study reveals the complexities of family involvement in the nursing home by drawing attention to the moral dimension of the issues experienced by families, as seen through the theoretical lens of Baier’s care ethical concept of trust as a theoretical lens. The synthesis of literature resulted in a thematic categorization of issues reported by families, namely, family–staff relationship, psychosocial factors and organizational circumstances. The care ethical interpretation of the synthesis of literature showed that the concept of trust resonates with all reported issues. Trust evolves over time. Early issues are mostly related to getting to know each other. Secondly, families want to experience that staff are competent and of good will. Difficult feelings families may have, such as guilt or loneliness, and dealing with the deterioration of the loved one puts families in a vulnerable position. This power imbalance between family and staff impedes a trusting relationship. Issues related to organizational circumstances, such as understaffing, also undermine families' trust in staff and the nursing home. Discussion and conclusion Baier’s theoretical concept of trust provides a deeper insight into the moral dimension of family involvement from the perspective of families in the nursing home. To improve family involvement in practice, we propose to aim future interventions at reinforcing trust in the relationship between family and staff as well as in the organizational context in which these care relationships occur.

Contains fulltext : 291198.pdf (Publisher’s version ) (Open Access) BACKGROUND: During the course of their disease, patients are, apart from suffering physical discomfort, also confronted with psychological, social, and spiritual challenges. However, healthcare professionals often lack the knowledge and skills to address the spiritual dimension and are in need of support for taking this responsibility. Spiritual caregivers are experts in spiritual care, but their contribution to the integration of this care by other healthcare professionals is largely unknown. OBJECTIVE: The aim of this study was to investigate how Dutch spiritual caregivers view their role in increasing the integration of spiritual care in daily healthcare practice as provided by other healthcare professionals in the Netherlands, and how they address this role. METHODS: An online survey was conducted from May until June 2021 among spiritual caregivers working in Dutch healthcare. Data were analysed using descriptive statistics. RESULTS: The majority of the 174 respondents answered that they already fulfil a role in the integration of spiritual care by, for example, providing education, coaching on the job, or participating in multidisciplinary consultation. However, the majority of respondents experienced barriers to their contribution, such as confusion of terminology and use of language while collaborating with other healthcare professionals and reluctance to share information. CONCLUSIONS: While spiritual caregivers realise having the potential to make important contributions to the further process of integration of spiritual care into the daily practice of other healthcare professionals, some practices and perceptions, especially from within their own discipline, may hamper this.

The use of qualitative research in empirical bioethics is becoming increasingly popular, but its implementation comes with several challenges, such as difficulties in aligning moral epistemology and methods. In this paper, we describe some problems that empirical bioethics researchers may face; these problems are related to a tension between the different poles on the spectrum of scientific paradigms, namely a positivist and interpretive stance. We explore the ideas of narrative construction, ‘genres’ in medicine and dominant discourses in relation to empirical research. We also reflect on the loss of depth and context that may occur with thematic or content analyses of interviews, and discuss the need for transparency about methodologies in empirical bioethics. Drawing on insights from narrative approaches in the social sciences and the clinical-educational discipline of Narrative Medicine, we further clarify these problems and suggest a narrative approach to qualitative interviewing in empirical bioethics that enables researchers to ‘listen (and read) in new ways’. We then show how this approach was applied in the first author’s research project about euthanasia decision-making. In addition, we stress the important ethical task of scrutinizing methodologies and meta-ethical standpoints, as they inevitably impact empirical outcomes and corresponding ethical judgments. Finally, we raise the question whether a ‘diagnostic’, rather than a ‘problem-solving’, mindset could and should be foregrounded in empirical ethics, albeit without losing a commitment to ethics’ normative task, and suggest further avenues for theorizing about listening and epistemic (in)justice in relation to empirical (bio)ethics.

Objectives Many aspects of palliative care, such as managing (complicated) symptoms, conducting goals-of-care conversations, and repeated exposure to loss, can be stressful to clinicians. Previous research on the emotional impact of providing palliative care was mainly done in specialist settings. However, the majority of palliative care is provided by clinicians who are not specialized in palliative care, and can be supported by palliative care specialists only when needed. Therefore, this study aimed to gain insight into the emotional impact of providing palliative care on clinicians, both palliative care generalists and specialists. Methods A qualitative interview study among 21 clinicians (11 doctors and 10 nurses) working in hospitals, home care, or nursing homes in the Netherlands was conducted. Between February and June 2019, 13 palliative care generalists and 8 specialists were interviewed. Interviews were thematically analyzed by two researchers. Results All clinicians considered the emotional impact of providing palliative care to be substantial and experienced both positive and negative aspects of providing palliative care. Several aspects of providing palliative care can support or undermine emotional stability. These so-called facilitators and barriers, such as practicing self-care and complexity of palliative care, were found at three different levels: individual, team, and organization. Significance of results Although clinicians experience providing palliative care as meaningful and valuable, the emotional impact is considerable. Negative and positive aspects often co-exist. Further insight into the dynamics and magnitude of the emotional impact of providing palliative care is needed in order to create a healthy working environment and develop adequate interventions.

While the COVID-19 crisis has affected people all around the world, it has not affected everyone in the same way. Besides glaring international differences, disparities in personal and situational factors have resulted in strikingly dissimilar effects even on people within the same country. Special attention is required in this regard for people with intellectual disabilities (ID) who are vulnerable to marginalization and precarization during crises as concerns over safety and public health are likely to trump consideration for inclusion and care. This article explores the lived experiences during the pandemic of people with ID living in care institutions in the Netherlands. Particular attention is paid to the challenges involved in living through periods of confinement and separation in what may be called “vulnerable spaces.” Drawing from interviews with individuals with a mild ID who have been restricted in seeing family and friends through the closed access of group homes to visits from outsiders, as well as interviews with their relatives and support workers, the article considers the ways in which stakeholders have responded to these spatial policies and negotiated the meaning of living space in times of crisis.

Key Points Question What are the patient characteristics and circumstances associated with the request for euthanasia and physician-assisted suicide (EAS) in cases of multiple geriatric syndromes as reported in the case summaries of the Dutch Regional Euthanasia Review Committees? Findings In this qualitative study of 53 case summaries published by the Dutch Regional Euthanasia Review Committees, a combination of multiple geriatric syndromes, such as visual impairment, hearing loss, pain, and chronic tiredness, may have led, in most cases, to an accumulation of suffering on multiple dimensions, resulting in a request for EAS because of unbearable suffering. Meaning This study suggests that unbearable suffering leading to a request for EAS in older persons without a life-threatening condition is often associated with a combination of medical, social, and existential issues., Importance The Dutch Regional Euthanasia Review Committees (RTEs) reviewed and reported an increasing number of cases of euthanasia and physician-assisted suicide (EAS) requested by older people with multiple geriatric syndromes (MGS). Knowledge of the characteristics of cases of EAS for MGS is important to facilitate societal debate and to monitor EAS practice. Objective To examine the accumulation of patient characteristics, geriatric syndromes, and other circumstances as reported in the case summaries of the RTEs that led to unbearable suffering associated with a request for EAS and to analyze the RTEs’ assessments of these cases of EAS. Design, Setting, and Participants A qualitative content analysis was conducted of all case summaries filed from January 1, 2013, to December 31, 2019, under the category MGS and published in a national open access database. These case summaries were selected by the RTEs from the total of 1605 reported cases of EAS in the category MGS. Results The RTEs published 53 cases (41 [77%] female) under the category MGS. A total of 28 patients (53%) had always perceived themselves as independent, active, and socially involved. None of the patients suffered from life-threatening conditions. Multiple geriatric syndromes, such as visual impairment (34 cases [64%]), hearing loss (28 cases [53%]), pain (25 cases [47%]), and chronic tiredness (22 cases [42%]), were common. The request for EAS was often preceded by a sequence of events, especially recurrent falls (33 cases [62%]). Although physical suffering could be determined in all cases, the case descriptions found that suffering occurred on multiple dimensions, such as the loss of mobility (44 [83%]), fears (21 [40%]), dependence (23 [43%]), and social isolation (19 [36%]). Conclusions and Relevance This qualitative study suggests that an accumulation of geriatric syndromes leading to a request for EAS is often intertwined with the social and existential dimension of suffering. This leads to a complex interplay of physical, psychological, and existential suffering that changes over time., This study from the Netherlands looks at the association between having multiple geriatric syndromes and requesting euthanasia or physician-assisted suicide.

Considerada uma dimensão essencial dos Cuidados Paliativos (CP), a espiritualidade tem sido objeto de rigorosa investigação científica nos Estados Unidos e Europa. No Brasil, a implementação de serviços de CP e a discussão sobre a integração da espiritualidade neste contexto são recentes. Este estudo apresenta o atual estado da arte sobre o tema. Foram realizadas buscas no Portal de Periódicos CAPES, Biblioteca Virtual em Saúde, SciELO e PUBMED. Ao todo, 25 estudos foram selecionados para análise, sendo 17 com foco central sobre espiritualidade nos CP. A literatura evidencia percepção crescente acerca do papel da espiritualidade nesse contexto; necessidade de pesquisas teoricamente fundadas e de modelos práticos de cuidado espiritual; carência na formação profissional em relação ao tema e desconhecimento sobre a importância da assistência espiritual especializada. Para o avanço do conhecimento nesse campo, futuros estudos devem considerar tais lacunas e potencialidades.

BackgroundThe EAPC White Paper addresses the issue of spiritual care education for all palliative care professionals. It is to guide health care professionals involved in teaching or training of palliative care and spiritual care; stakeholders, leaders and decision makers responsible for training and education; as well as national and local curricula development groups.MethodsEarly in 2018, preliminary draft paper was written by members of the European Association for Palliative Care (EAPC) spiritual care reference group inviting comment on the four core elements of spiritual care education as outlined by Gamondi et al. (2013) in their paper on palliative care core competencies. The preliminary draft paper was circulated to experts from the EAPC spiritual care reference group for feedback. At the second stage feedback was incorporated into a second draft paper and experts and representatives of national palliative care organizations were invited to provide feedback and suggest revisions. The final version incorporated the subsequent criticism and as a result, the Gamondi framework was explored and critically revised leading to updated suggestions for spiritual care education in palliative care.ResultsThe EAPC white paper points out the importance of spiritual care as an integral part of palliative care and suggests incorporating it accordingly into educational activities and training models in palliative care. The revised spiritual care education competencies for all palliative care providers are accompanied by the best practice models and research evidence, at the same time being sensitive towards different development stages of the palliative care services across the European region.ConclusionsBetter education can help the healthcare practitioner to avoid being distracted by their own fears, prejudices, and restraints and attend to the patient and his/her family. This EAPC white paper encourages and facilitates high quality, multi-disciplinary, academically and financially accessible spiritual care education to all palliative care staff.

ObjectivesIn palliative care, validated tools for professionals that facilitate day-to-day spiritual conversations with patients and loved ones are scarce. The objective of this study was to validate the Diamond spiritual conversation model across different palliative care settings as well as professional and educational levels.MethodsAn online survey was filled in by 387 professionals providing palliative care for patients in hospice, home care, hospital and nursing home settings. The five polarities of the Diamond model: holding on–letting go, doing–undergoing, remembering–forgetting, me–the other and believing–knowing were operationalised and evaluated on reported occurrence.ResultsIn conversations with patients, palliative care professionals reported letting go of loved ones (81.8%), dealing with pain and suffering (88.1%), dealing with issues from the past (67.2%), dealing with own versus loved one’s wishes (69.4%) and giving meaning to death (66.7%) as themes occurring regularly to very often. In conversations with loved ones, this was 70.8%, 78.5%, 55.4%, 68,8% and 62%, respectively. Respondents working in hospices reported these themes significantly more than those working in home care settings, nursing homes or hospitals. Nurse assistant respondents reported the themes significantly less than nurses or chaplains.ConclusionFrom the perspective of professionals providing palliative care in different palliative care settings, the Diamond model offers a validated framework for addressing relevant spiritual themes for patients and loved ones.

Background: Patients receiving palliative care value attention given to their spiritual needs. However, these needs often remain unexplored as healthcare professionals lack the skills to identify and explore them and to integrate this information into care plans. Aim: To evaluate the effects of an interactive communication training intervention for palliative care teams in order to identify and explore the spiritual dimension and integrate it in patients’ care plans. Design: A mixed methods pre-post study, including self-assessment questionnaires, evaluation of videos with simulated consultations (applied competence) and medical record review (implementation). Setting/participants: Three palliative care teams including nurses ( N = 21), physicians ( N = 14) and spiritual caregivers ( N = 3). Results: The questionnaires showed an improvement on ‘Patient and family-centred communication’ of the End-of-life professional caregiver survey (+0.37, p Conclusions: Our training intervention resulted in increased palliative care professionals’ competence in identifying and exploring patients’ spiritual issues, and their integration in multidimensional proactive palliative care plans. The intervention directly addresses patients’ spiritual concerns and adds value to their palliative care plans.

Dependency is fundamental to caring relationships. However, given that dependency implies asymmetry, it also brings moral problems for nursing. In nursing theory and theories of care, dependency tends to be framed as a problem of self‐determination—a tendency that is mirrored in contemporary policy and practice. This paper argues that this problem frame is too narrow. The aim of the paper is to articulate additional theoretical ‘problem frames’ for dependency and to increase our understanding of how dependency can be navigated in practices of long‐term care. It does so by way of an empirical ethical analysis of how care professionals tackle the problem of dependency in group homes for people with intellectual disabilities. The paper refers to these practices of mitigating the problem of dependency as ‘dependency work’, a phrase borrowed from Eva Kittay. The analysis of dependency work suggests that for care professionals, dependency is a threefold problem: one of self‐determination, one of parity and one of self‐worth. These findings suggest that patient autonomy cannot be a full solution to the problem of dependency in long‐term care relations. But they also show that dependency as such is not a problem that can be solved, as attempts to mitigate it only serve to tighten the dependency relationship further. This is the paradox of dependency work.

ObjectivesHospice care in the Netherlands is provided in three different types of hospice facilities: volunteer-driven hospices (VDH), stand-alone hospices (SAHs) and hospice unit nursing homes (HU). The organisational structures range from care directed by trained volunteers in VDH to care provided by multiprofessional teams in SAH and HU units.This study aims to characterise the patient populations who access Dutch hospices and describe the patient profiles in different hospice types.MethodsA retrospective cohort study using clinical records of adult hospice inpatients in 2017–2018 from a random national sample of hospices.ResultsIn total 803 patients were included from 51 hospices, mean age 76.1 (SD 12.4). 78% of patients had a primary diagnosis of cancer, 3% identified as non-Dutch cultural background and 17% were disorientated on admission. At admission, all patients were perceived to have physical needs. Psychological needs were reported in 37%, 36% and 34%, social needs by 53%, 52% and 62%, and existential needs by 23%, 30% and 18% of patients in VDH, SAH, HU units, respectively. 24%, 29% and 27% of patients from VDHs, SAHs and HUs had care needs in three dimensions, and 4%, 6% and 3% in all four dimensions.ConclusionsPeople who access Dutch hospices predominantly have cancer, and have a range of physical, psychological, social and existential needs, without substantial differences between hospice types. Patients with non-malignant disease and non-Dutch cultural backgrounds are less likely to access hospice care, and future policy would ideally focus on facilitating their involvement.

To provide insight into the prevalence of persistent death wishes without being severely ill among Dutch older persons aged 75 and above; to describe the characteristics and circumstances of this group; to improve knowledge on the nature of their death wishes.Cross-sectional study.In 2019 we conducted a large survey among a representative sample of 32,477 Dutch citizens aged 55 and above from the TNS-NIPObase. The questionnaire was completed by 21,294 respondents in April 2019 (response rate 65.6%). This article comprises a subanalysis of the respondents aged 75 and above.Of all 3,141 respondents aged 75 and above, 56 were identified as having a persistent death wish and no severe illness (PDW-NSI). The weighted percentage representing the Dutch population indicates PDW-NSI among 2.07% of all older persons aged 75 and above in the Netherlands. Respondents with PDW-NSI had a lower level of education, were of lower social class and lived in highly urbanized areas more often. Important aspects enhancing the death wish were dependence on others, worrying, physical or mental deterioration, health problems and loneliness. The death wish was subject to change and the intensity varied over time.Of older persons aged 75 and above with PDW-NSI, a considerable part stays out of sight of healthcare professionals because they do not communicate about their death wish. This may challenge timely support. Carefully questioning the meaning and nature of the death wish is essential to understand the background and underlying needs of the persons concerned.

CONTEXT: Palliative care aims to support patients' spiritual needs with the intention of promoting their spiritual well-being (SWB), an important dimension of quality of life. SWB is one of the less-studied dimensions of QoL, particularly in a secular country such as the Netherlands.OBJECTIVES: In this study we aimed to get a better understanding of SWB in Dutch patients with advanced cancer. We therefore examined its prominence and associated factors.METHODS: We used the baseline data of a cohort study on experienced quality of care and quality of life (eQuiPe study), which included 1,103 patients with advanced cancer. In addition to sociodemographic and religious/spiritual characteristics, study measures comprised the SWB subscales Meaning, Peace, and Faith of the revised FACIT-Sp-12, spiritual problems and needs (PNPCsv), quality of life (EORTC-QLQ-C30) and satisfaction with healthcare professionals' interpersonal skills (INPATSAT-32).RESULTS: On average, patients experienced quite a bit of Meaning (8.9, SD 2.3), a little bit to somewhat Peace (6.8, SD 2.7), and very low levels of Faith (2.9, SD 3.7). Two-thirds (71%) of patients reported one or more spiritual problems, for which the majority (54%) wanted to receive attention. In the final multivariable models, only a few factors were associated with SWB, such as greater spiritual needs with lower levels of Meaning and Peace.CONCLUSION: Dutch patients with advanced cancer experience medium to low levels of Meaning, Peace, and Faith. More attention for their SWB is warranted.

In recent years, some within chaplaincy have advocated for a stronger focus on outcomes, including outcome research, whereas others in the field have questioned an outcome-oriented perspective. In this article, existing outcome studies are reviewed in relation to the ongoing discussion about a process- or outcome-oriented approach to chaplaincy. A central question emerges from this discussion: how can outcome research be designed that respects the integrity of the profession of chaplaincy? A literature search in MEDLINE/Pubmed produced twenty-two chaplaincy outcome studies that met the inclusion criteria. A review of these studies shows that thus far most have focused on secondary chaplaincy outcomes (e.g., satisfaction) using quantitative designs. To respect the integrity of chaplaincy, it is recommended that future studies should also focus on characteristic chaplaincy outcomes, use mixed methods designs, and articulate more clearly how their chosen outcomes, outcome measures, and interventions relate to the work of chaplaincy.

This paper examines the prevalence of the ideal of “independence” in intellectual disability care in the Netherlands. It responds to a number of scholars who have interrogated this ideal through the lens of Michel Foucault’s vocabulary of governmentality. Such analyses hold that the goal of “becoming independent” subjects people with intellectual disabilities to various constraints and limitations that ensure their continued oppression. As a result, these authors contend, the commitment to the ideal of “independence” – the “ethic of autonomy” – actually threatens to become an obstacle to flourishing in the group home. This paper offers an alternative analysis. It does so by drawing on a case study taken from an ethnographic study on group home life in the Netherlands. Briefly put, the disagreement stems from differing conceptualizations of moral life. Put in the vocabulary of moral anthropologist Cheryl Mattingly, the authors propose to approach the group home more from a “first-person” perspective rather than chiefly from a “third-person” perspective. They then draw on Mattingly to cast the group home as a “moral laboratory” in which the ethic of autonomy is not just reproduced but also enacted, and in which the terms of (in)dependence constantly get renegotiated in practice. What emerges is not only a new perspective on the workings of the “ethic of autonomy” in the group home, but also an argument about the possible limitations of the vocabulary of governmentality for analysing care practices.

Het is voor iedereen die in de zorg gaat werken zinvol om na te denken over wat zorg nu eigenlijk precies is. En wat je als zorgprofessional precies tot je domein rekent. Waar begint en eindigt goede zorg voor jou? Beperkt die zich noodzakelijkerwijs tot het lichaam? Reken je de manier waarop mensen met hun klachten omgaan ook tot je werkterrein? En wat als je mensen niet kunt genezen, en er bijvoorbeeld meer existentiele – of zingevingsvragen aan bod komen? Praat je daar ook over met je patienten? Hoe ga je om met de voortdurende confrontatie met lijden die onvermijdelijk bij werken in de zorg hoort? Behandel je als dokter het lichaam, de geest of allebei?

Context. Providing palliative care can lead to work-related stress and ultimately to burnout. The need for palliative care will further increase due to population aging and people living longer with life-threatening diseases. Therefore, a healthy palliative care workforce is vital. Objectives. This study aims to get insight into the experienced work-related stress among healthcare professionals providing palliative care in the Netherlands and their strategies and needs in relation to maintaining a healthy work-life balance. Methods. A cross-sectional online survey among members of the Dutch Association for Palliative Care Professionals was conducted between February and March 2020. Burnout was assessed by the validated Burnout Assessment Tool. Self-constructed questions assessed strategies and needs of healthcare professionals providing palliative care regarding workrelated stress. Results. In total 179 eligible respondents responded (response rate 54%). Respondents were mostly female (79%) and older than 50 years (66%). Most respondents were nurses (47%) and physicians (39%). Two-thirds of respondents (69%) experienced a median level of burnout and 2% a (very) high level. Furthermore, 7% had been on sick leave due to burnout. Although healthcare professionals engage on average in 3.7 coping activities, a quarter (23%) felt that these activities were not sufficient to maintain balanced. Respondents feel a need for activities aimed at the team and organisation level such as feeling emotionally safe within their team. Conclusion. Symptoms of burnout are quite prevalent among healthcare professionals providing palliative care in the Netherlands. Healthcare professionals have a need for team and organisation approaches to maintain a healthy work-life balance. J Pain Symptom Manage 2021;62:e38-e45. (c) 2021 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Using the spiritual needs questionnaire has a moral dimension. In this contribution we reflect on this dimension from the perspective of the ethics of care. Because care is both an attitude and a practice in the use of the spiritual needs questionnaire four phases of caring can be distinguished with four qualities or ethical elements: caring about, caring for, caregiving and care receiving. Parallel to these phases using the spiritual care questionnaire requires a caring attitude that is characterized by attentiveness, responsibility, competency and responsiveness.

Background: In recent years there has been increasing attention for the prevalence and prevention of burnout among healthcare professionals. There is unclarity about prevalence of burnout in healthcare professionals providing palliative care and little is known about effective interventions in this area. Aim: To investigate the prevalence of (symptoms of) burnout in healthcare professionals providing palliative care and what interventions may reduce symptoms of burnout in this population. Design: A systematic literature review based on criteria of the PRISMA statement was performed on prevalence of burnout in healthcare professionals providing palliative care and interventions aimed at preventing burnout. Data sources: PubMed, PsycInfo and Cinahl were searched for studies published from 2008 to 2020. Quality of the studies was assessed using the method of Hawkers for systematically reviewing research. Results: In total 59 studies were included. Burnout among healthcare professionals providing palliative care ranged from 3% to 66%. No major differences in prevalence were found between nurses and physicians. Healthcare professionals providing palliative care in general settings experience more symptoms of burnout than those in specialised palliative care settings. Ten studies reported on the effects of interventions aimed at preventing burnout. Reduction of one or more symptoms of burnout after the intervention was reported in six studies which were aimed at learning meditation, improving communication skills, peer-coaching and art-therapy based supervision. Conclusion: The range of burnout among healthcare professionals providing palliative care varies widely. Interventions based on meditation, communication training, peer-coaching and art-therapy based supervision have positive effects but long-term outcomes are not known yet.

BackgroundPatients receiving palliative care may benefit greatly when their existential or spiritual strengths are fostered. To date however, there has not been a comprehensive literature review of patient and care professional approaches that are available.AimsTo describe and synthesise existential or spiritual strength-based approaches within the context of palliative care.MethodsLiterature search of 2436 articles between January 1999 and March 2019 in Scopus, Web of Science, CINAHL and PsycINFO. Articles were included if they deal with a palliative care situation, focus on the patient, specific existential/spiritual strength, discernible strength approach and an analysis of the workings of that approach. The interpretative synthesis consisted of a thematic analysis of the included articles and an integration of themes.ResultsIn the 14 included articles, 5 different strengths were found to be fostered by 16 approaches: (1) Meaning was fostered by: maintaining normalcy, experiencing sanctuaries, reassessing importance and reconstructing positive self; (2) Connection by: opening up, giving/receiving care and envisioning continuation; (3) Agency by: maintaining control, refocusing goals and continuous adaptation; (4) Hope through: setting special targets, imagining alternate outcomes, building a collection and extending wishes; (5) Faith through: living the tradition and relating to a benevolent force. Strengths and approaches are visualised in an overarching analytical framework: ‘the Propeller’.ConclusionsThe constructed Propeller framework can be used to become aware of, apply and further develop approaches to foster existential or spiritual strengths among patients receiving palliative care.

Background Some older persons develop a persistent death wish without being severely ill, often referred to as “completed life” or “tiredness of life”. In the Netherlands and Belgium, the question whether these persons should have legal options for euthanasia or physician-assisted suicide (EAS) is intensely debated. Our main aim was to investigate the prevalence and characteristics of older adults with a persistent death wish without severe illness, as the lack of this knowledge is a crucial problem in de debate. Methods We conducted a survey among a representative sample of 32,477 Dutch citizens aged 55+, comprising questions about health, existential issues and the nature of the death wish. Descriptive statistics were used to describe the group with a persistent death wish and no severe illness (PDW-NSI) and several subgroups. Results A total of 21,294 respondents completed the questionnaire (response rate 65.6%). We identified 267 respondents (1.25%) as having a persistent death wish and no severe illness (PDW-NSI). PDW-NSI did not only occur among the oldest old. Although qualifying themselves as “not severely ill”, those with PDW-NSI reported considerable health problems. A substantial minority of the PDW-NSI-group reported having had a death wish their whole lives. Within the group PDW-NSI 155 (0.73%) respondents had an active death wish, of which 36 (0.17% of the total response) reported a wish to actually end their lives. Thus, a death wish did not always equal a wish to actually end one’s life. Moreover, the death wishes were often ambiguous. For example, almost half of the PDW-NSI-group (49.1%) indicated finding life worthwhile at this moment. Conclusions The identified characteristics challenge the dominant “completed life” or “tiredness of life” image of healthy persons over the age of 75 who, overseeing their lives, reasonably decide they would prefer to die. The results also show that death wishes without severe illness are often ambiguous and do not necessarily signify a wish to end one’s life. It is of great importance to acknowledge these nuances and variety in the debate and in clinical practice, to be able to adequately recognize the persons involved and tailor to their needs.

Background: Although compassionate care is considered a cornerstone of quality palliative care, there is a paucity of valid and reliable measures to study, assess, and evaluate how patients experience compassion/compassionate care in their care.Objective: To develop a patient-reported compassion measure for use in research and clinical practice with established content-related validity evidence for the items, question stems, and response scale.Methods: Content validation for an initial 109 items was conducted through a two-round modified Delphi technique, followed by cognitive interviews with patients. A panel of international, Subject Matter Experts (SMEs) and a Patient Advisory Group (PAG) assessed the items for their relevancy to their associated domain of compassion, yielding an Item-level Content Validity Index (I-CVI), which was used to determine content modifications. The SMEs and the PAG also provided narrative feedback on the clarity, flow, and wording of theinstructions, questions, and response scale, with items being modified accordingly. Cognitive interviews were conducted with 16 patients to further assess the clarity, comprehensibility, and readability of each item within therevised item pool.Results: The first round of the Delphi review produced an overall CVI of 72% among SMEs and 80% among the PAG for the 109 items. Delphi panelists then reviewed a revised measure containing 84 items, generating an overallCVI of 84% for SMEs and 86% for the PAG. Sixty-eight items underwent further testing via cognitive interviews with patients, resulting in an additional 14 items being removed.Conclusions: Having established this initial validity evidence, further testing to assess internal consistency, test-retest reliability, factor structure, and relationships to other variables is required to produce the first valid, reliable,and clinically informed patient-reported measure of compassion.

This contribution focuses on palliative care from a care ethical perspective. First the historical background of care ethics is presented by discussing the work of Gilligan, Noddings, Gadow and Tronto. Care ethics is seen as an interdisciplinary field of studies, adopting a moral perspective characterized by special attention to the inherently moral nature of caring, relationships as an integral part of caring, a critical stance towards institutional contexts and technology, the way caring as a social practice is culturally defined, and connecting the moral and the political spheres. After having identified some structural similarities between care ethics and palliative care, a number of critical issues are identified that are not or only partly addressed in contemporary palliative care ethics. These are: power struggles between paradigms; dealing with conflicts; neglect of gender issues and diversity; and struggles with ethical contextuality.

A stroke can have implications for all areas of a person's life. In research on adaptation to stroke, finding meaning is associated with better adaptation. This study focuses on one of the driving principles behind meaning-making processes: global meaning. The aim of this study was to explore whether global meaning (i.e., fundamental beliefs and life goals concerning core values, relationships, worldview, identity and inner posture) is associated with processes and outcomes of rehabilitation, as experienced by people with stroke. In-depth, semi-structured interviews were conducted, and analysed using qualitative research methods. Aspects of global meaning were associated with the following elements of process and outcome of rehabilitation: motivation, handling stress and emotions, physical functioning and acceptance. The influence was mostly positive. If rehabilitation professionals took global meaning into account, respondents tended to associate this with better or faster recovery.