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Advance Directives (ADs) have traditionally focused on documenting patients' end-of-life (EOL) care preferences. Recently, discussions surrounding post-mortem care as an additional aspect of EOL care planning have gained attention. This study examined ADs across all 50 states and the District of Columbia (referred to as "entities"), assessing their inclusion of two post-mortem categories: funeral planning and anatomical gifts. Results revealed that 29% of entities offered options from both categories, 43% provided options from only one of the categories, and 27% lacked options from either category. Unexpectedly, only one entity (2%) provided all post-mortem options from both categories. These findings suggest a lack of consistency in the availability of post-mortem options across ADs. By emphasizing the importance of comprehensive EOL care planning, this study provides valuable insights into the necessity for AD standardization, particularly regarding post-mortem preferences for patients who choose to express them.

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The current fallback position for the elderly frail nearing the end of life (less than 12 months to live) is hospitalisation. There is a reluctance to use the term 'terminally ill' for this population, resulting in overtreatment, overdiagnosis and management that is not consistent with the wishes of people. This is the major contributor to the so-called hospital crisis, including decreased capacity of hospitals, reduced ability to conduct elective surgery, increased attendances at emergency departments and ambulance ramping. The authors recently conducted the largest randomised study, to their knowledge, attempting to inform specialist hospital medical teams about the terminally ill status of their admitted patients. This information did not influence their clinical decisions in any way. The authors discuss the reasons why this may have occurred, such as the current avoidance of discussing death and dying by society and the concentration of healthcare workers on actively managing the acute presenting problem and ignoring the underlying prognosis in the elderly frail. The authors discuss ways of improving the management of the elderly nearing the end of life, such as more detailed goals of care discussions using the concept of shared decision-making rather than simply completing Advanced Care Decision documents. Empowering people in this way could become the most important driver of people's health care.

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Death Cafes (DCs) explicitly encourage conversation and constitute space to explore the dialogue around death and dying. This study draws on scholarship from communication and dialogue theory to explore the design features and facilitation practices used within DC meetings. Through qualitative analysis of the DC webpage and interviews with facilitators, the study uncovers how DC facilitators structure and manage conversations to help attendees normalize death conversations and manage the death anxiety of others in their lives. The analysis highlights three main tensions within the DC structure and facilitation guidelines: structure versus openness, authority versus equality, and conversation versus information. These fundamental contradictions are inherent in DCs, and facilitators need to manage them in order to promote meaningful dialogue among DC participants. This study deepens the theorizing around DC facilitation practices and has implications for death and dying practitioners hoping to foster dialogue about end-of-life topics.

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Controlled organ donation after circulatory death (DCD) was re-introduced in the UK in 2008, in efforts to increase rates of organs for transplant. Following reintroduction, there were debates about the ethics of DCD, including whether potential DCD donors receive end-of-life care which is in their best interests. Since this time, DCD has become a routine donor pathway in the NHS. In this article, we present findings from an ethnographic study examining the everyday practices of DCD in two English Trusts. Drawing on the concept of death brokering and Bea's (2020) call to consider organ donation as embedded and routine practice within health care, we look at how DCD is integrated into end-of-life care in intensive care units. We show how DCD is made routine at the end-of-life via the practices of health professionals who create an active separation between discussions about death and donation; reproduce usual ways of doing things in end-of-life care; and respect the distinction between patient/donor, dying and death. In doing so, we argue these function to preserve the patienthood of the potential donor, ensuring DCD operates as an integrated part, and culturally accepted form of, good end-of-life care for potential donors, their relatives, and health professionals alike.

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OBJECTIVES: Old age is the stage of life when people are the most vulnerable to existential experience. These concerns intensify in late adulthood when individuals become increasingly prone to reflection and inclined to evaluate their lives. The study aimed to explore how older people who are active learners dealt with their existential concerns. METHOD: The study was based on the qualitative approach and grounded theory. The data collection methods were narrative interviews and semi-structured interviews. Eighteen interviews were conducted. The narrators were students of Universities of the Third Age. RESULTS: An in-depth analysis of the collected empirical material revealed three themes that helped us understand how study participants differentiated their ways of dealing with self-perception of aging, effectiveness, and performing developmental tasks. This also allowed us to distinguish three main strategies educationally active older adults used to cope with existential concerns: repression, escape, and engagement. CONCLUSION: The study's results indicate that confrontation or avoidance of existential problems can be perceived as a factor contributing to developing an older person's identity in two different ways. On the one hand, the readiness to face existential concerns leads to maturity in old age, a high level of social adaptation, supporting others, and, at the same time, focusing on oneself while ignoring existential concerns, which may contribute to held age identities that are younger than actual age.

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INTRODUCTION: Support staff within social care settings have expressed a need for resources to facilitate end-of-life care planning with people with intellectual disabilities. This study aimed to co-design a preliminary toolkit of end-of-life care planning approaches and resources that can be implemented in adult social care services for people with intellectual disabilities. METHODS: An adapted Experience-Based Co-Design process was applied to develop a toolkit for end-of-life care planning with people with intellectual disabilities. A co-design group (the 'All Together Group') met six times from January to October 2023. The group comprised nine people with intellectual disabilities (including four researchers with intellectual disabilities, who also co-facilitated the workshops), five family members, five intellectual disability support staff, two intellectual disability service managers, and five healthcare professionals. RESULTS: The All Together Group tested resources for and approaches to end-of-life care planning with people with intellectual disabilities, based on findings from a scoping review and a focus group study. Easy-read end-of-life care planning forms were deemed overwhelming and complicated, whilst visual and creative approaches were welcomed. Three new visual resources to support illness planning and funeral planning with people with intellectual disabilities were developed: (i) 'When I'm ill' thinking cards; (ii) 'Let's Talk About Funerals' conversation-starter pictures; and (iii) 'My funeral' planning cards. These three resources, alongside three positively evaluated existing resources, were included in a new toolkit for end-of-life care planning with people with intellectual disabilities. CONCLUSION: Through an iterative, flexible, inclusive, and comprehensive co-design process, a toolkit of three newly developed and three existing resources was created to facilitate support staff in doing end-of-life care planning with people with intellectual disabilities. Following a trialling process with support staff, the final toolkit was made freely available online. PATIENT OR PUBLIC CONTRIBUTION: The research team included four researchers with intellectual disabilities (A.C., D.J., L.J., and R.K.-B). Researchers with intellectual disability have been part of every step of the research process; from study design to data collection and analysis to dissemination of study findings.Intellectual disability service provider representatives (M.W., N.P., and S.S.) were part of the co-design group as well. Two of these representatives were also co-applicants in the overall project (N.P. and S.S.). The co-design group included people with intellectual disabilities, families, intellectual disability support staff and health and social care professionals. The study was supported by a Research Advisory Group comprising a variety of stakeholders, including people with intellectual disabilities families, intellectual disability researchers, representatives from intellectual disability organisations, and policymakers.

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This study investigated the association between multidimensional death anxiety and religiosity in multicultural Singapore by examining potential variations by age and gender. We also explored the possibility of a curvilinear effect, where highly religious or non-religious individuals report lower death anxiety than moderately religious people, forming an inverted U-curve pattern. Data were collected from 110 participants using questionnaires that assessed death anxiety and religiosity. Parametric and non-parametric tests were then conducted. The findings showed that women had significantly higher death anxiety and religiosity than men, and highly and moderately religious people had significantly higher death anxiety than non-religious people. People of all age groups had similar levels of death anxiety. These findings highlight the importance of developing targeted death anxiety interventions that integrate spiritual aspects in Singapore so that clinicians can provide culturally competent care.

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Background and Objectives: Death is an unavoidable experience in any person's life and affects not only the dying person but also their caregivers. The dying process has been displaced from homes to health care facilities in the majority of cases. Facing death and dying has become an everyday life of health care professionals (HCP), especially in palliative care (PC) settings. This study aimed to investigate the death attitudes among HCPs in Serbia. Materials and Methods: The Serbian version of the Death Attitude Profile-Revised (DAP-RSp) was used as a measurement instrument. Results: The average age of the 180 included participants was 42.2 ± 9.9 years; the majority were females (70.0%), with more than 10 years of working experience (73.0%), physicians (70.0%) and those working in a non-oncological (non-ONC) field (57.78%). The mean total score of DAP-RSp was 124.80 ± 22.44. The highest mean score was observed in the neutral acceptance dimension (NA) (5.82 ± 0.90) and lowest in the Escape acceptance (EA) (2.57 ± 1.21). Higher negative death attitudes were reported among nurses compared to physicians (p = 0.002). Statistically significant differences were observed in the fear of death (FD) and death avoidance (DA) domains, favoring PC specialists and oncologists (p = 0.004; p = 0.015). Physicians working in Oncology (ONC) showed lower FD values (p = 0.001) compared to non-ONC departments. Conclusions: Attitudes toward death among HCPs are of great importance for the well-being of both HCPs and patients. Negative attitudes can lead to deficient care. The fear of death is highly represented among Serbian HCPs working in non-ONC fields, including both nurses and physicians. This study emphasizes the need for further research to comprehensively explore and understand HCPs' attitudes toward death. This research highlights the need for the development of an educational curriculum across all levels of medical education, aimed at overcoming the fear of death and enhancing coping strategies, which will improve the care for patients diagnosed with terminal illnesses.

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The demands and costs of health care resulting from increasingly ageing populations have become a major public health issue in the United Kingdom and other industrially developed nations. Concern with cost containment and shortage of resources has prompted a progressive shift in responsibility from state provision of care to individual patients and their families, and from the institutional setting of the hospital to the domestic home. Under the guise of choice and patient centredness, end-of-life care is framed within a discourse of the 'good death': free from distress and discomfort and accompanied by significant others in the preferred place, usually assumed to be home. The promotion of the 'good death' as a technical accomplishment enabled by pre-emptive discussion and advance care planning has sidelined recognition of the nature and significance of the pain and suffering involved in the experience of dying. There has been little research into the disparity between policy and professional assumptions and the lived reality of end of life. In this paper, we present findings from a qualitative study of how terminally ill patients, bereaved family members, and members of the public understand, anticipate, and experience death and dying. These findings contribute to an important and timely critique of the normative idealisation of death and dying in health policy and practice, and the need to attend closely to the real-world experiences of patients and the public as a prerequisite for identifying and remedying widespread shortcomings in end-of-life care.

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Ninety-one percent of surviving spouses in the U.S. cared for their spouses before they died. This review explores the challenges of the transition from caregiving to widowhood and different coping strategies used by widowed spousal caregivers. A systematic review of literature on the transition from caregiving to widowhood was conducted using four major academic search engines. Overall, 280 articles were identified, with 22 meeting the inclusion criteria. Challenges for widowed caregivers included experiencing care burden, letting go of the caregiver role, grief, and triggers. Widowed caregivers' coping strategies included social support and services use, filling the time gap, finding spirituality, and engaging in unhealthy behaviors. Future research is needed to determine the efficacy of widowed caregivers' coping strategies. Concerted and collaborative action by health professionals, community organizations, and policymakers is needed to develop programs and other approaches to support widowed caregivers.

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BACKGROUND: Research evidence suggests that a lack of engagement with palliative care and advance care planning could be attributed to a lack of knowledge, presence of misconceptions and stigma within the general public. However, the importance of how death, dying and bereavement are viewed and experienced has been highlighted as an important aspect in enabling public health approaches to palliative care. Therefore, research which explores the public views on strategies to facilitate engagement with palliative care and advance care planning is required. METHODS: Exploratory, qualitative design, utilising purposive random sampling from a database of participants involved in a larger mixed methods study. Online semi-structured interviews were conducted (n = 28) and analysed using reflexive thematic analysis. Thematic findings were mapped to the social-ecological model framework to provide a holistic understanding of public behaviours in relation to palliative care and advance care planning engagement. RESULTS: Three themes were generated from the data: "Visibility and relatability"; "Embedding opportunities for engagement into everyday life"; "Societal and cultural barriers to open discussion". Evidence of interaction across all five social ecological model levels was identified across the themes, suggesting a multi-level public health approach incorporating individual, social, structural and cultural aspects is required for effective public engagement. CONCLUSIONS: Public views around potential strategies for effective engagement in palliative care and advance care planning services were found to be multifaceted. Participants suggested an increase in visibility within the public domain to be a significant area of consideration. Additionally, enhancing opportunities for the public to engage in palliative care and advance care planning within everyday life, such as education within schools, is suggested to improve death literacy and reduce stigma. For effective communication, socio-cultural aspects need to be explored when developing strategies for engagement with all members of society.

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BACKGROUND: Several mental health outcomes develop following bereavement. Little research has examined bereavement in the workplace and the associated risk factors, particularly in Arab populations. OBJECTIVES: The objectives of this cross-sectional study were to determine the sociodemographic characteristics of bereaved employees, measure the prevalence of their dysfunction, establish the type of closeness and conflict in their relationship with the deceased, determine the available resources to the bereaved, and determine the proportion of bereaved employees who needed help. METHODS: A study was conducted on Arabian Gulf University employees (91) in Bahrain. The revised Two Track Bereavement Questionnaire (TTBQ3-CG11) was utilized to assess bereavement outcomes. RESULTS: The response rate of the study was 28%. The composition of the study population was as follows: 51.6% males, 37.4% in the age range of 40-49 years, 86.8% married, 39.6% Bahraini, and 51.6% academicians. Over half of the participants had biopsychosocial dysfunction, 35.2% had active relational grief and trauma (ARGT), 36.3% had a conflict with the deceased, and half were close to the deceased. Total TTBQ3-CG11 scores showed that 28.6% of the bereaved had a low score (14-22), 61.5% medium (23-28), and 9.9% high (29 or more), with more females than males in the high category. The majority reported receiving adequate support from the administration and colleagues following their loss. CONCLUSION: There is a need to establish bereavement policies and procedures at tertiary educational institutes. This study may inform future policies to advance bereavement services in the educational institutions of the region.

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Medical Assistance in Dying (MAID) legislation has evolved rapidly in Canada with significant impacts on nursing practice. The purpose of this paper is to describe evolving complexities in legislative context and practice standards that influence the experiences nurse practitioners and registered nurses have with MAID. Qualitative interviews were conducted with 25 registered nurses and 10 nurse practitioners from diverse contexts across Canada. Participants described their practices and considerations when discussing MAID as part of advance care planning; their use of, and challenges with, waivers of consent; their practice considerations in negotiating the complexities of clients for whom death is not reasonably foreseeable; and their moral wrestling with the inclusion of MAID for persons whose sole underlying medical condition is mental illness. Findings illustrate the moral complexities inherent in the evolving legislation and the importance of robust health and social care systems to the legal and ethical implementation of MAID in Canada.

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In this study, Indigenous Elders in Canada were interviewed to explore their conceptualizations of death and dying, particularly in relation to suicide. Through reflexive thematic analysis, three key themes were developed: Indigenous conceptions of death and dying, Christian influences on views of suicide, and indirect suicide. The theme of Indigenous conceptualizations of death and dying included the subthemes of spirituality and life after death, highlighting the importance of spiritual beliefs in Indigenous culture and knowledge systems. The impact of Christian influences on views of suicide was also explored, with participants discussing the complex nature of the relationship between Christianity and Indigenous peoples. Finally, the theme of indirect suicide was analyzed, referring to deaths resulting from behaviors that do not necessarily fit within the conventional definition of suicide. Overall, this study highlights the importance of honoring Indigenous cultural knowledge in research related to suicide prevention in Indigenous communities.

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The aim of this study was to explore the post-earthquake experiences, difficulties, and coping strategies of older adults who experienced the Kahramanmaras earthquakes that occurred in Türkiye in 2023. This research was designed as a qualitative descriptive study. The study was conducted with 21 (13 female and 8 male) older adults and the mean age of the participants was 70.2 (in the range of 65-85). In line with the data obtained from the participants, "Fulfilling Basic Needs of Older Adults, Emotional Turmoil in Later Life, Healthcare Disparities in Aging, Adaptive Response of Older Adults" themes and sub-themes related to the theme were formed. Both physical and socio-emotional challenges, as well as coping strategies and support systems that older adults face in the aftermath of earthquakes, demonstrate unique characteristics for this demographic group. Therefore, it is recommended to plan programs by considering these differences while planning intervention programs before, during, and after the disaster.

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The proliferation of assisted dying legislative reforms globally is a significant change in the social and medico-legal landscape of end-of-life care. Understanding the impacts of these legislative reforms on family members who care for a dying person is vital, yet under-theorised in research. In this article, drawing on semi-structured interviews with 42 carers for a person who has sought assisted dying in Australia, and extending ideas of ontological choreography we explore the new and complex choreographies enacted by carers in their endeavour to arrange a 'good death' for the dying person. We find that desires to fulfil the dying person's wishes are often accompanied by normative pressures, affective tensions and complexities in bereavement. Enacting assisted dying requires carers to perform a repertoire of highly-staged practices. Yet, institutional obstacles and normative cultural scripts of dying can constrain carer assisted dying practices. Understanding the nuances of carers' experiences and how they navigate this new end-of-life landscape, we argue, provides critical insights about how assisted dying legislation is producing new cultural touchpoints for caring at the end of life. Moreover, we show how emerging cultural scripts of assisted dying are impacting in the lives of these carers.

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BACKGROUND: The COVID-19 pandemic led to an intensified fear and threat of dying, combined with dying and grieving in isolation, in turn significantly impacting nursing in end-of-life situations. The study aims (1) to understand the lived experiences of nurses who provided care to end-of-life patients during COVID-19; and (2) to explore whether providing care under such circumstances altered the perspectives of these nurses regarding end-of-life care. METHODS: Applying the phenomenological-interpretive qualitative approach, 34 in-depth semi-structured interviews were conducted between March 2020-May 2021 with nurses from eight hospitals in Israel who were recruited through purposive and snowball sampling. Thematic analysis was applied to identify major themes from the interviews. RESULTS: Five main themes emerged from the analysis, including: (1) a different death; (2) difficulties in caring for the body after death; (3) the need for family at end-of-life; (4) weaker enforcement of advance care directives; and (5) prolonging the dying process. DISCUSSION: During the pandemic, nurses encountered numerous cases of death and dying, while facing ethical and professional issues regarding end-of-life care. They were required to administer more aggressive care than usual and even necessary, leading to their increased moral distress. The nurses' ethical concerns were also triggered by the requirement to wrap the corpse in black garbage-like bags to prevent contagion, which they felt was abusing the dead. The findings also demonstrate how family presence at end-of-life is important for the nursing staff as well as the patient. Finally, end-of-life situations during the pandemic in Israel were managed in an individual and personal manner, rather than as a collective mission, as seen in other countries. CONCLUSIONS: The study offers insights into the nurses' attitudes towards death, dying, and end-of-life care. An emphasis should be placed on the key elements that emerged in this study, to assist nurses in overcoming these difficulties during and after medical crises, to enhance end-of-life care and professionalism and decrease burnout.

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AIM: To synthesise nurses' and physicians' experiences with withdrawing life-sustaining treatment in an intensive care unit. DESIGN: The chosen methodology is thematic synthesis. The Preferred Reporting Items for Systematic Review and Meta-Analyses and Enhancing Transparency are used in Reporting the Synthesis of Qualitative Research Statement. METHODS AND DATA SOURCES: A systematic search is conducted in APA PsycINFO, CINAHL Plus, EMBASE, PubMed and Web of Science following the inclusion and exclusion criteria in April 2023. Two reviewers independently screened and extracted the qualitative data. Subsequently, data analysis was conducted using thematic analysis of qualitative research. This study was not registered with any review registry due to the irrelevance of the data to health-related outcomes. RESULTS: From the 16 articles, 267 quotes were extracted and analysed. The findings of the study revealed five analytical themes: (1) tensions between interdependent collaboration and hierarchical roles; (2) tensions between dignified dying or therapeutic perspectives; (3) family members' reflections of patient's wishes; (4) tensions in family members' positions; and (5) double-sidedness of distress. CONCLUSION: This study contributes to nursing knowledge by providing a more nuanced understanding of this complex phenomenon of withdrawing life-sustaining treatment. The findings of this study have revealed significant variations globally in the practices surrounding the withdrawal of life-sustaining treatment in intensive care units, emphasising the need for further research to inform clinical practices that cater to diverse contexts. REPORTING METHOD: Enhancing Transparency are used in Reporting the Synthesis of Qualitative Research Statement (ENTREQ statement). PATIENT OR PUBLIC CONTRIBUTION: Since this study reported a potential collision between the patient's dignified dying and the family member's perceptions and interests, the family member's wishes should be carefully distinguished from the patient's quality of end of life in practice.

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Talking about death and dying is promoted in UK health policy and practice, from a perception that to do so encourages people to plan for their end of life and so increase their likelihood of experiencing a good death. This encouragement occurs alongside a belief that members of the public are reluctant to talk about death, although surveys suggest this is not the case. This paper describes findings from a research study in which people participated in deliberative discussion groups during which they talked about a range of topics related to death, including talking about death, the good death, choice and planning and compassionate communities. Here we report what they had to say in relation to talking about death and dying. We identified three themes: 1. The difference between talking about death as an abstract concept and confronting the certainty of death, 2. how death and dying presents issues for planning and responsibility, and 3. approaches to normalising death within society. For our participants, planning was considered most appropriate in relation to wills and funerals, while dying was considered too unpredictable to be easy to plan for; they had complex ideas about the value of talking about death and dying.