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Motor neurone disease (MND) is a progressive neurodegenerative disorder which is ultimately terminal. It causes muscle weakness which can lead to the need for assistance in breathing, for some with the disease. This paper draws on qualitative research using semi-structured interviews with 32 people bereaved by the death of a family member with MND who was dependent on home mechanical ventilation, from across the United Kingdom. Interviews explored how the end-of-life of a person who had used non-invasive ventilation to assist their breathing was experienced by participants, who had cared about, and for them. Four themes are used to examine the impact of dependent ventilation technology on the experience of dying on the part of bereaved family members. Themes are: accompanied dying, planned withdrawal of ventilation, blurred time of death, time post-death. The perception and experience of time was a key component across all four themes. Ventilator technology played a critical role in sustaining life, but it could also contribute to a complex dynamic where the realities of death were mediated or obscured. This raises ethical, emotional, and existential considerations, both for the individuals receiving ventilator support and their families, as well as for healthcare professionals involved in end-of-life care.

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BACKGROUND: Physician-assisted suicide (PAS) and voluntary euthanasia remain highly debated topics in society, drawing attention due to their ethical, legal, and emotional complexities. Within this debate, the loss of a loved one through suicide may shape the attitudes of survivors, resulting in more or less favorable attitudes towards this topic. AIMS: This study aims to explore and compare the attitudes towards PAS and voluntary euthanasia in a population of suicide loss survivors and the general population, while also considering socio-demographic factors. METHODS: A total of 529 participants, 168 of whom were survivors of suicide loss, completed an online questionnaire on their attitudes (NOBAS) and opinions (open response format) towards PAS and voluntary euthanasia, as well as regarding their legalization in Germany. The analysis consisted of both quantitative and qualitative components. RESULTS: The entire sample showed positive attitudes towards PAS and voluntary euthanasia in terminally ill persons. Participants were more divided in their attitudes towards PAS in the case of a mental health disorder. Individuals without experienced suicide loss were more liberal regarding legalization in Germany and were more likely to understand the wish for PAS. Survivors of suicide loss were mainly concerned about the consequences for relatives. However, differences between both groups are small. DISCUSSION: The experience of a loss by suicide influences attitudes towards PAS and voluntary euthanasia. Both groups showed an accepting attitude towards PAS and voluntary euthanasia, but also expressed concerns and fears regarding easy accessibility and consequences for grieving relatives.

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Objectives: The study aimed to explore how terminally ill individuals in the United States approach medical aid in dying (MAID), including personal, interpersonal and structural factors that influence their decision-making processes. Methods: This embodied phenomenological study incorporated semi-structured (N = 9) interviews with seven terminally ill adults who received a prescription for MAID. Interviews occurred over Zoom between October 2021-January 2023 and was guided by Ashworth's framework for exploring phenomenological lifeworlds. Participants were invited to share perceptions of their lifeworlds in pursuit of MAID including values; embodied health, ability, and emotions; space and place in society; reflections on time/timing; and political and cultural discourse. Data analysis integrated Wertz's phenomenological psychological analysis methods. Results: The phenomenon of choosing MAID is an intricate juggling of lifeworlds between participants' embodied relationships, values, time and agency which lead to co-existing experiences of uncertainty and hard-won relief. Conclusion: Our findings contribute cutting-edge knowledge of the decisional tensions and triumphs terminally ill individuals encounter as they approach MAID and highlight practical implications for health and mental health providers in preparing psychoeducational support for those seeking MAID.

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Background: Many factors, such as religion, geography, and customs, influence end-of-life practices. This variability exists even between different physicians. Objective: To observe and describe the end-of-life actions of patients in the intensive care unit (ICU) and document the variables that might influence decision-making at the end of life. Materials and Methods: This is a cross-sectional study performed in the ICU patients of a private hospital from March 2017 to March 2022. We used the Philips Tasy Electronic Medical Record database of clinical records; 298 patients were included in the study during these five years (2017-2022). The data analysis was done with the statistical package SPSS version 23 for Windows. Results: A total of 297 patients were included in this study, of which more than half were men. About 60% of our sample had private health insurance, whereas the remaining paid out of pocket. Most patients had withholding treatment, followed by failed cardiopulmonary resuscitation, withdrawal treatment, and brain death, and none of the patients had acceleration of the dying process. The main cause of admission to the ICU in our center was respiratory complications. Most of our samples were Catholics. Conclusions: Decision-making at the end of life is a complex process. Active participation of the patient, when possible, the patient's family, doctors, and nurses, can give different perspectives and a more compassionate and individualized approach to end-of-life care.

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BACKGROUND: Since legalization of Medical Assistance in Dying in Canada in 2016, nurses are increasingly faced with new and evolving communication challenges as patients in a diversity of settings and contexts contemplate their end-of-life options. PURPOSE: The purposes of this study were: 1) to develop an understanding of the nuances and challenges associated with MAID-related communication from the perspective of registered nurses, and 2) to draw on the insights arising from this analysis to reflect on the evolution of MAID communication for nurses over time. METHODS: This study represented a secondary analysis of two primary qualitative data sets, including: 74 interviews of Canadian registered nurses self-identifying as having some exposure to MAID in their clinical practice; and 47 narrative reflections volunteered by respondents to questions posed in an online MAID reflective guide for nurses. RESULTS: Nurses described evolving complexities associated with introducing and engaging with the topic of MAID with their patients, helping patients navigate access to MAID assessment, managing family and community dynamics associated with opinions and beliefs surrounding MAID, supporting patients in their planning toward a MAID death, and being there for patients and their families in the moment of MAID. CONCLUSIONS: MAID communication is highly complex, individualized, and context-specific. It is apparent that many nurses have developed an impressive degree of comfort and skill around navigating its nuances within a rapidly evolving legislative context. It is also apparent that dedicated basic and continuing MAID communication education will warranted for registered nurses in all health care settings.

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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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OBJECTIVE: Contemporary approaches to suicide assessment and treatment incorporate reasons for living (RFL) and reasons for dying (RFD). This study qualitatively explored individuals' self-described RFL and RFD in the context of suicidal thinking and behaviors. METHOD: Within a community United Kingdom (UK) sample, adults (N = 331, aged 16+) responded to eight open-ended questions probing their experiences of suicide, defeat, and entrapment. Utilizing these data, which were collected from a larger online survey examining risk and protective factors for suicidal behaviors, this study explored RFL and RFD within these narratives. After the research team established an initial code book, RFL and RFD codes were subsequently analyzed through inductive and deductive thematic analyses. RESULTS: The present study identified five complimentary RFD-RFL themes: (1) Hopelessness-Hopefulness, (2) Stress of Responsibilities-Duty to Responsibilities, (3) Social Disconnection-Social Connection, (4) Death as Sin-Desire for an Afterlife, and (5) Temporary Escapes as Coping-Entrapment (i.e., a lack of escape). Three subthemes within the RFD theme Entrapment were General/Unspecified, By Feelings, and Within Self. CONCLUSIONS: Identified themes reflect the existing quantitative RFL and RFD literature. The identified RFL and RFD themes are discussed with reference to their clinical applications in advancing suicide-specific assessments and interventions. We propose a dimensional framework for RFD and RFL which informs future suicidal behaviors research and practice.

The study highlights the complex co-existence of reasons for dying and reasons for living.Reasons for living and dying should be explored in parallel in a therapeutic setting.The relative value placed on RFL/RFD by the individual should also be considered.

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BACKGROUND: Dignity is omnipresent in Western ethics, but it also provokes dissension and controversy. One of the most striking examples is the debate on medically assisted death, where dignity is invoked to support antagonistic positions. While some authors conclude that the concept is useless as an ethical reference, many others invite us to deepen our analysis from a multidimensional perspective, to enrich it and make it useful. This scoping study is intended to provide an overview of the different conceptions of dignity used in the assisted dying debate, to better grasp the multiple facets of the concept. METHODS: The Joanna Briggs Institute's JBI Manual for Evidence Synthesis guided the scoping review. Key words were based on the researchers' expertise and were used to identify relevant literature in French and English. Eleven databases covering the last six decades were consulted. Initially, 2,071 references were found in the databases. After excluding duplicates, screening titles, abstracts, and full texts, and after a specific literature search on the concept of relational dignity, 156 papers were found to match the identified inclusion criteria. RESULTS: The literature highlights the stark confrontation between two dominant conceptions of dignity: ontological and autonomist. However, a lesser-known conceptualization of dignity integrates these two perspectives, underlining the relational and social dimensions of dignity. As a result, dignity emerges as a dynamic, experiential, and dialogical concept, that modulates itself according to circumstances. This raises the possibility of breaking through the binary debate and questioning the current frameworks that define dignity. CONCLUSIONS: This multidimensional conceptualization of dignity could lead to a more complete and nuanced understanding of the concept, as well as open richer normative horizons regarding the issue of medically assisted death.

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Objectives: In the province of Quebec, Canada, interdisciplinary support groups (ISGs) are mandated to support those who are involved in the clinical, administrative, legal and ethical aspects of medical assistance in dying (MAiD). This article presents the results of a mixed-method, multi-phase study carried out in 2021 on ISGs with the aim to describe current ISG practices, critically analyze them and make recommendations on promising practices for provincial implementation. Method: Semi-structured interviews (42) and focus groups (7) with coordinators of 24 ISGs were used to identify promising practices and confirm their utility with participants. Results: We have distributed the ISGs along what we coined an "ISG continuum." Between teams' accountability (decentralization) and ISGs' assumption of responsibility for MAiD requests (centralization), a middle ground approach, focused on the value of support, should be favored. Conclusion: The structuring of ISGs and their practices is intimately linked to their values. Harmonization of ISGs and their practices, while considering their specific values and contexts, can contribute to the equity and quality of services intended for those who request MAiD and those who support them.

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Objectives: Medical Assistance in Dying (MAiD) was legalized in Canada in 2016, necessitating greater education and training in MAiD for physicians and nurse practitioners. To meet this need, the Canadian MAiD Curriculum (CMC) was developed to offer a nationally accredited, comprehensive, bilingual, hybrid (synchronous and asynchronous) educational program to support and enhance the practice of MAiD in Canada. Methods: This work describes the process of developing the CMC, including its guiding principles and framework. The CMC was guided by constructivism and adult learning theory, preliminary literature review, 5 key principles based on a needs assessment survey, as well as consultation with diverse partners. Results: Seven modules were developed: (1) foundations of MAiD in Canada, (2) clinical conversations that includes MAiD, (3) how to do an MAiD assessment, (4) capacity and vulnerability, (5) providing MAiD, (6) navigating complex cases with confidence, and (7) MAiD and mental disorders. An eighth topic on clinician resilience and reflection was woven into each of the 7 modules. Conclusion: This curriculum ensures that consistent information is available to healthcare providers concerning the practice of MAiD in Canada. To ensure sustainability, the CMC will continue to be updated alongside the evolution of MAiD policy and services in Canada.

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PURPOSE: Improving end-of-life (EOL) quality for terminally ill cancer patients is crucial. However, associations between hospice/palliative care and EOL quality, as perceived by patients, are underreported. We aimed to examine the impact of palliative care consultative services on the EOL quality during cancer patients' last six months. METHODS: In this prospective, longitudinal study, 174 cancer patients were divided into a palliative care consultative services group (n = 65) or a non palliative care consultative services group (n = 109). The impact of palliative care consultative services on EOL quality, assessed using the Quality of Dying and Death (QODD) scale at the first and last assessments within the patients' last six months, was analyzed by linear regression with generalized estimating equations, adjusting for covariates. RESULTS: Cancer patients received palliative care consultative services a median of 34.0 days before death. There were significant main effects of groups, indicating that patients receiving palliative care consultative services had better QODD total scores (ß [95% confidence interval] = 2.12 [0.32,3.93], p = .021), death preparation (3.80 [1.71,5.89], p < .001), and treatment preferences than the reference group (3.27 [0.90,5.64], p = .007). No group differences were found in other dimensions, including symptom and personal care, whole person concern, and time with family. CONCLUSION: Palliative care consultative services significantly improved cancer patients' perceptions of death preparation, treatment preferences, and the QODD total score. Therefore, healthcare professionals should offer palliative care consultative services to cancer patients, initiate early referrals for such care, and implement effective and individualized interventions to enhance EOL quality.

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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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As more and more American states legalize medical aid in dying (MAID), Consultation-Liaison Psychiatrists will increasingly be asked to assist medical and surgical colleagues in differentiating this end-of-life practice from suicide. Where suicide is traditionally understood as an act clouded by depression, desperation, or both, MAID represents a terminally medically ill patient's effort to take control of their dying process when death is imminent, likely to occur within 6 months, and inevitable. Rendering opinions on patient suicidality in the setting of a complex co-occurring medical illness is a Consultation-Liaison Psychiatrist's bread and butter. This paper seeks to elucidate 4 points that distinguish MAID from suicide: (1) Hastening death when the end of natural life is approaching is not synonymous with suicide in the vernacular American usage of the term. (2) Unlike suicide, MAID is a highly collaborative process in which dying, mentally capable adults involve their doctors and loved ones in legally recognized decisions to hasten death. (3) The clinical presentation of patients requesting MAID differs from that of individuals whose suicidality is driven by psychopathology. (4) Certain behavioral traits differentiate such MAID patients from suicidal ones. Understanding and applying these distinctions in the consultation-liaison arena will help remove the stigma of suicide from end-of-life care deliberations where it does not belong while ensuring appropriate end-of-life care for dying individuals for whom MAID is the culmination of a carefully considered process of self-determination rather than suicide.

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One criticism of medical aid in dying (MAID) is the expressivist objection: MAID is morally wrong because it expresses judgments about disabilities or persons with disabilities, that are offensive, disrespectful, or discriminatory. The expressivist objection can be made at the level of individual patients, medical providers, or the state. The expressivist objection originated with selective abortion, and responses to it in that context typically claim either that selective abortion does not express specific judgments about disabilities, or that any judgments expressed are not offensive. This response is inadequate: MAID often does express negative judgments about disabilities, which could reasonably be seen as offensive. But, does this offensiveness make MAID wrong? Drawing on Joel Feinberg's account of offense, I argue that it is unlikely that the offensiveness of the judgments expressed by individuals who seek MAID or through the state's legalization of MAID is enough to make it morally impermissible.

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BACKGROUND: Awareness-raising and education have been identified as strategies to counter the taboo surrounding death and dying. As the favoured venue for youth education, schools have an essential role to play in informing future decision-makers. However, school workers are not comfortable addressing the subjects of death and dying, which, unlike other social issues, have no guidelines to influence awareness of these subjects in youth. OBJECTIVES: To systematically explore the knowledge and practices on raising awareness about death and dying in schools, the viewpoints of the people involved (young people, school workers; parents), and the factors that either promote or hinder awareness practices. METHOD: The scoping review method of Levac and Colquhoun (Implement Sci 5(1):69, 2010) will be used. Using a combination of keywords and descriptors, a body of literature will be identified through 15 databases and through grey literature searches, manual searches, consultation of key collaborators, and the list of relevant literature. Publications since 2009 will be selected if they relate directly to awareness-raising about death and dying in schools. Writings will be selected and extracted by two independent people, and conflicts resolved by consensus. The extracted data will be synthesized using a thematic analysis method. Experts from a variety of disciplines (health sciences, humanities, social sciences, and education) will be consulted to enhance the interpretation of the preliminary results. Results will be presented in narrative form and will include tables and diagrams. CONCLUSION: The results of this scoping review will contribute to the development of educational practices adapted to young people and to the identification of future avenues of research on awareness of death and dying.

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OBJECTIVES: To investigate the current literature on healthcare policies and cost analyses around international Voluntary Assisted Dying (VAD) laws. The study design is a mapping literature review following Preferred-Reporting-Items-for-Systematic-Reviews-and-Meta-Analyses (PRISMA) guidelines. METHODS: Original research articles published between January 1990 to March 2023, investigating the financial cost and healthcare budget effect of VAD laws internationally. Citations were screened for relevance and eligibility, and any non-full-text research that did not explore cost analysis was excluded. The following data sources were screened: MEDLINE, PubMed, EMBASE, CINAHL and any relevant international health authority annual reports were also reviewed. RESULTS: Of the 2790 screened articles, eight studies met the inclusion criteria and three were included in the mapping review. The reviewed studies included prospective studies, two Canadian and one US. Only one of the Canadian studies provided a cost analysis using data from current VAD laws. All three studies showed VAD laws would reduce healthcare spending, with the US approximating $627million in 1995. Canada approximating $17.1 to $77.1million in 2017 and $86.9 to $149.0million in 2021, overall, leading to an average percentage reduction in costs of approximately 87% compared to original costs of end-of-life care. CONCLUSION: This review identifies a scarcity in cost-analysis literature and provides a summary of the latest international VAD laws, from which a potential cost reduction is apparent. The absence of retrospectively collated financial VAD data highlights a need for future research to inform policymakers of the economic factors affecting current policies with a need for annual fiscal reports and to optimise future legislative frameworks internationally.

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Background: Sustainable Development Goal 3.4.1 (SDG3.4.1) targets a one-third reduction in non-communicable disease (NCD) mortality in ages 30-69-years by 2030 (relative to 2015). Directing interventions to achieve this aim requires reliable estimates of underlying cause of death (UCoD). This may be problematic when both cardiovascular diseases (CVD) and diabetes are present due to a lack of consistency in certification of such deaths. We estimate empirically 2013-17 NCD mortality in Fiji, by sex and ethnicity, from CVD, diabetes, cancer, and chronic lower respiratory diseases (CRD), and aggregated as NCD4. Methods: UCoD was determined from Medical Certificates of Cause-of-Death (MCCD) from the Fiji Ministry of Health after pre-processing of mortality data where diabetes and/or hypertension were present in order to generate internationally comparable UCoD. If no potentially fatal complications from diabetes or hypertension accompanied these causes in Part I (direct cause) of the MCCD, these conditions were re-assigned to Part II (contributory cause). The probability of a 30-year-old dying before reaching age 70-years (PoD30-70), by cause, was calculated. Findings: The PoD30-70 from NCD4 over 2013-17 differed by sex and ethnicity: in women, it was 36% (95%CI 35-37%) in i-Taukei and 27% (26-28%) in Fijians of Indian descent (FID); in men, it was 41% (40-42%) in both i-Taukei and FID.PoD30-70 from CVD, diabetes, cancer and CRD in women was: 18%, 10%, 13% and 1·0% in i-Taukei; 13%, 10%, 5·6% and 1·1% in FID; in men was: 28%, 8.4%, 7·6% and 2·2% in i-Taukei; 31%, 8.3%, 3.5% and 3·1% in FID. Interpretation: To achieve SDG3.4.1 goals in Fiji by 2030, effective population wide and ethnic-specific interventions targeting multiple NCDs are required to reduce PoD30-70 from NCD4: from 36% to 24% in i-Taukei, and 27% to 18% in FID women; and from 41% to 27% in i-Taukei and FID men. Funding: Not applicable.

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INTRODUCTION: The topic of death and the dying is a crucial aspect of patient care, especially for individuals with terminal illnesses. However, discussions about death and dying are often avoided during patient interactions. In this article, our aim is to explore the reasons behind our fear of death and dying and to assess the importance of addressing these issues in shaping and cultivating relationships with our patients and in our personal lives. We argue that being open to impermanence is a valuable tool in our work with patients and their families and should be integrated into conversations with them. Furthermore, discussions about death and dying should play a central role in medical and nursing education as well as professional development.

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OBJECTIVES: Advance care planning (ACP), which comprises a living will, durable power of attorney for health care (DPAHC), and end-of-life discussions, is an inherently relational process. However, it is unclear how marital status affects men's and women's ACP over the life course. Drawing on social control and gender as relational frameworks, we examine marital status differences in ACP, and how these patterns differ by gender and age. METHODS: Data are from the 2020 Health and Retirement Study (HRS), a representative sample of U.S. older adults (N = 7,074). We estimate logistic regression models to evaluate whether marital status differences in ACP are moderated by age and gender, and multinomial logistic regressions to examine age and gender differences in DPAHC designations among married parents. Analyses are adjusted for sociodemographic and health covariates. RESULTS: Multivariable analyses revealed significant moderation effects for discussions only. Among married/cohabiting persons, women are more likely than men to have end-of-life discussions, with differences diminishing slightly at oldest ages. Among divorced persons in their 60s and 70s, women are much more likely than men to have had discussions, although this gap converges among the oldest-old. Conversely, young-old widowed men and women are equally likely to have discussions, although women are increasingly likely to do so with advancing age. Men are more likely than women to name their spouse as DPAHC, yet this gap diminishes with age. DISCUSSION: Health care providers can better guide end-of-life consultations if they understand how men's and women's family relationships change with advancing age.

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Background: Some commentators and several professional medical associations have expressed concern that legalizing medical aid in dying ("MAID") will undermine patient trust in the medical profession, particularly among historically disadvantaged patient populations. While this concern remains influential, it has been subject to limited empirical scrutiny. Objectives: This study aims to empirically assess whether MAID legalization undermines patient trust, with considerations of potential trust/demographic correlations in marginalized and minority patient populations. Design: We developed an RCT survey study that assessed patients' trust in the medical professional using the Abbreviated Wake Forest Scale ("AWFS"). Two versions of the survey were used, each distributed at random to half of participants. One survey version included notification that MAID had been legalized in the jurisdiction where patients were receiving care and the other version omitted this information. Setting/Population: We surveyed capacitated, English-speaking adult patients who were receiving care at a not-for-profit, 912-bed academic and research hospital in Washington, D.C. Of those invited to participate, 494 patients (63.2%) completed all AWFS questions, and 70.1% identified as Black or African American and 32.9% as having a physical or mental disability. Conclusions: Most of the participants not notified that MAID was legal in DC were not aware of this fact (92.5%). Patients who were notified that MAID was legal in DC were significantly more likely to report approval of MAID legalization (p = 0.0410), but showed no significant difference in AWFS score for trust in their physicians. The study did not substantiate concerns that legalizing medical aid in dying undermines patient trust in the medical profession.