Interdisciplinary research approach based on a mixed-methods design to explore patient altruism at the end of life: a study protocol.

INTRODUCTION: In the end of life context, patients are often seen as somewhat passive recipients of care provided by health professionals and relatives, with little opportunity to be perceived as autonomous and active agents. Since studies show a very high prevalence of altruistic dispositions in palliative care patients, we strive to investigate the concept of patient altruism in a set of six interdisciplinary studies by considering three settings: (1) in the general palliative context-by studying to what extent patient altruism is associated with essential psychological outcomes of palliative care (subproject 1a), how altruism is understood by patients (subproject 1b) and how altruism expressed by patients is experienced by palliative care nurses (subproject 1c); (2) in two concrete decision-making contexts-advance care planning (subproject 2a) and assisted suicide (subproject 2b); and (3) through verbal and non-verbal patient communication in palliative care settings (subproject 3). METHODS AND ANALYSIS: Subproject 1a: a cross-sectional study using validated and standardised questionnaires. Subprojects 1b and 1c: a constructivist grounded theory method aiming at developing a novel theory from semistructured interviews in both patients and nurses. Subproject 2a: a thematic analysis based on (1) audio-recordings of advance care planning encounters and (2) follow-up semidirective interviews with patients and their relatives. Subproject 2b: a qualitative study based on thematic analysis of interviews with patients actively pursuing assisted suicide and one of their relatives.Subproject 3: a conversation analysis based on audio and video-recorded interactions in two settings: (1) palliative inpatient unit and (2) advance care planning discussions. ETHICS AND DISSEMINATION: The study project was approved by the Ethics Committees of the Canton of Vaud, Bern and Ticino (no: 2023-00088). In addition to participation in national and international conferences, each project will be the subject of two scientific publications in peer-reviewed journals. Additional publications will be realised according to result triangulation between projects. A symposium opened to professionals, patients and the public will be organised in Switzerland at the end of the project.

Euthanasia and Physician-Assisted Suicide in People With an Accumulation of Health Problems Related to Old Age: A Cross-Sectional Questionnaire Study Among Physicians in the Netherlands.

Objectives: We explored characteristics of people with an accumulation of health problems related to old age requesting euthanasia or physician-assisted suicide (EAS) and identified characteristics associated with granting EAS requests. Methods: We conducted a cross-sectional questionnaire study among Dutch physicians on characteristics of these people requesting EAS (n = 123). Associations between characteristics and granting a request were assessed using logistic regression analyses. Results: People requesting EAS were predominantly >80 years old (82.4%), female (70.0%), widow/widower (71.7%), (partially) care-dependent (76.7%), and had a life expectancy >12 months (68.6%). The most prevalent health problems were osteoarthritis (70.4%) and impaired vision and hearing (53.0% and 40.9%). The most cited reasons to request EAS were physical deterioration (68.6%) and dependence (61.2%). 44.7% of requests were granted. Granting a request was positively associated with care dependence, disability/immobility, impaired vision, osteoporosis, loss of control, suffering without prospect of improvement and a treatment relationship with the physician >12 months. Conclusion: Enhanced understanding of people with an accumulation of health problems related to old age requesting EAS can contribute to the ongoing debate on the permissibility of EAS in people without life-threatening conditions.

Facing a request for assisted death - views of Finnish physicians, a mixed method study.

BACKGROUND: Assisted death, including euthanasia and physician-assisted suicide (PAS), is under debate worldwide, and these practices are adopted in many Western countries. Physicians' attitudes toward assisted death vary across the globe, but little is known about physicians' actual reactions when facing a request for assisted death. There is a clear gap in evidence on how physicians act and respond to patients' requests for assisted death in countries where these actions are not legal. METHODS: A survey including statements concerning euthanasia and PAS and an open question about their actions when facing a request for assisted death was sent to all Finnish physicians. Quantitative data are presented as numbers and percentages. Statistical significance was tested by using the Pearson chi-square test, when appropriate. The qualitative analysis was performed by using an inductive content analysis approach, where categories emerge from the data. RESULTS: Altogether, 6889 physicians or medical students answered the survey, yielding a response rate of 26%. One-third of participants agreed or partly agreed that they could assist a patient in a suicide. The majority (69%) of the participants fully or partly agreed that euthanasia should only be accepted due to difficult physical symptoms, while 12% fully or partly agreed that life turning into a burden should be an acceptable reason for euthanasia. Of the participants, 16% had faced a request for euthanasia or PAS, and 3033 answers from 2565 respondents were achieved to the open questions concerning their actions regarding the request and ethical aspects of assisted death. In the qualitative analysis, six main categories, including 22 subcategories, were formed regarding the phenomenon of how physicians act when facing this request. The six main categories were as follows: providing an alternative to the request, enabling care and support, ignoring the request, giving a reasoned refusal, complying with the request, and seeing the request as a possibility. CONCLUSIONS: Finnish physicians' actions regarding the requests for assisted death, and attitudes toward euthanasia and PAS vary substantially. Open discussion, education, and recommendations concerning a request for assisted death and ethics around it are also highly needed in countries where euthanasia and PAS are not legal.

Frequency of self-directed dying in the Netherlands: research protocol of a cross-sectional mixed-methods study.

INTRODUCTION: In the Netherlands, assisting in suicide is allowed for physicians and regulated by the Termination of Life on Request and Assisted Suicide (review procedures) Act. However, some people decide to end their lives outside the medical domain, without a physician's help. Two approaches for such self-directed dying are voluntary stopping eating and drinking (VSED) and independently taking lethal medication attended by a confidant (ILMC). The frequency of deaths by either of these methods in the Netherlands was examined in 2007. Since then, there have been societal, political and healthcare developments which may have had an influence on the frequency of self-directed dying. The primary objective of this study is to estimate how many people in the Netherlands currently die by VSED or ILMC. Secondary objectives include providing insight in the characteristics and quality of dying of people who choose for self-directed dying. METHODS AND ANALYSIS: This cross-sectional study consists of an online questionnaire study (January to February 2024) among a randomly drawn sample (n=37 500) from a representative panel of the Dutch adult population in which participants are asked about potential experiences of close relatives choosing for VSED or ILMC. A two-stage screening procedure will be used to determine whether the respondents' experiences represent a death by VSED or ILMC. Additional interviews (n=40) will be held with questionnaire respondents indicating their willingness to participate (May to September 2024). Quantitative data will be analysed using SPSS software, and qualitative data will be thematically analysed using NVivo software. ETHICS AND DISSEMINATION: The study obtained approval from the Medical Research Ethics Committee of the Erasmus Medical Center, under number MEC-2023-0689. Informed consent will be sought from study participants in line with General Data Protection Regulation legislation. Results of the study will be disseminated through publications in scientific journals and conference presentations. TRIAL REGISTRATION NUMBER: NCT06186791.

Educational content and strategies to support nurses from culturally and linguistically diverse backgrounds caring for patients considering voluntary assisted dying: The Australian experience.

OBJECTIVES: Drawing on findings from a qualitative study that aimed to explore the knowledge and attitudes of nurses from culturally and linguistically diverse (CALD) backgrounds about voluntary assisted dying (VAD). The study also aimed to identify the strategies that assist nurses in their readiness and preparation for exposure to VAD. This paper reports on the educational content and strategies that could assist nurses from CALD backgrounds to be better prepared when they encounter VAD requests. BACKGROUND: Around the world, healthcare professionals have roles to play in caring for patients requesting voluntary assisted dying. Nurses, particularly those from diverse geographic and clinical settings, have voiced inadequate knowledge and understanding about voluntary assisted dying. DESIGN: A qualitative descriptive approach was undertaken. METHODS: Data collection involved one focus group and 16 in-depth interviews. A total of 21 nurses from CALD backgrounds were recruited from one Australian state. Thematic analysis was conducted to interpret the data. FINDINGS: Nurses identified their knowledge gaps and specified the need for education and workplace training on VAD, its legal and ethical aspects, clarity on their role, communication techniques and how VAD intersects with their practice. They suggested various teaching strategies that could prepare nurses to work safely and confidently in a clinical environment where voluntary assisted dying is an option for patients. CONCLUSION: Given the high number of nurses from diverse backgrounds working in the Australian health sector, these nurses need to be fully prepared to care for patients requesting VAD.

Assisted dying: principles, possibilities, and practicalities. An English physician's perspective.

It seems probable that some form of medically-assisted dying will become legal in England and Wales in the foreseeable future. Assisted dying Bills are at various stages of preparation in surrounding jurisdictions (Scotland, Republic of Ireland, Isle of Man, Jersey), and activists campaign unceasingly for a change in the law in England and Wales. There is generally uncritical supportive media coverage, and individual autonomy is seen as the unassailable trump card: 'my life, my death'.However, devising a law which is 'fit for purpose' is not an easy matter. The challenge is to achieve an appropriate balance between compassion and patient autonomy on the one hand, and respect for human life generally and medical autonomy on the other. More people should benefit from a change in the law than be harmed. In relation to medically-assisted dying, this may not be possible. Protecting the vulnerable is a key issue. Likewise, not impacting negatively on societal attitudes towards the disabled and frail elderly, particularly those with dementia.This paper compares three existing models of physician-assisted suicide: Switzerland, Oregon (USA), and Victoria (Australia). Vulnerability and autonomy are discussed, and concern expressed about the biased nature of much of the advocacy for assisted dying, tantamount to disinformation. A 'hidden' danger of assisted dying is noted, namely, increased suffering as more patients decline referral to palliative-hospice care because they fear they will be 'drugged to death'.Finally, suggestions are made for a possible 'least worse' way forward. One solution would seem to be for physician-assisted suicide to be the responsibility of a stand-alone Department for Assisted Dying overseen by lawyers or judges and operated by technicians. Doctors would be required only to confirm a patient's medical eligibility. Palliative-hospice care should definitely not be involved, and healthcare professionals must have an inviolable right to opt out of involvement. There is also an urgent need to improve the provision of care for all terminally ill patients.

Rural healthcare professionals' participation in Medical Assistance in Dying (MAiD): beyond a binary decision.

BACKGROUND: Medical Assistance in Dying (MAiD) was legalized in Canada in 2016 and amended in 2021. At the time that this study was conducted, the federal government was considering expanding the eligibility criteria to include patients whose death was not reasonably foreseeable. The purpose of this study was to better understand rural healthcare professionals' experiences with assisted dying set against the backdrop of legislative expansion. METHODS: A qualitative exploratory study was undertaken with general rural practice physicians, nurse practitioners, registered nurses, ethicists, patients, and patient families in rural Southern Alberta, Canada. For this paper, data from 18 audio-recorded and transcribed semi-structured interviews with healthcare professionals were analyzed using thematic analysis. Categories and patterns of shared meaning that linked to an overarching theme were identified. RESULTS: Between the binary positions of full support for and conscientious objection to assisted dying, rural healthcare professionals' decisions to participate in MAiD was based on their moral convictions, various contextual factors, and their participation thresholds. Factors including patient suffering; personal and professional values and beliefs; relationships with colleagues, patients and family, and community; and changing MAiD policy and legislation created nuances that informed their decision-making. CONCLUSIONS: The interplay of multiple factors and their degree of influence on healthcare professionals' decision-making create multiple decision points between full support for and participation in MAiD processes and complete opposition and/or abstention. Moreover, our findings suggest evolving policy and legislation have the potential to increase rural healthcare professionals' uncertainty and level of discomfort in providing services. We propose that the binary language typically used in the MAiD discourse be reframed to reflect that decision-making processes and actions are often fluid and situational.

The association between social connectedness and euthanasia and assisted suicide and related constructs: systematic review.

BACKGROUND: Euthanasia and assisted suicide (EAS) requests are common in countries where they are legal. Loneliness and social isolation are modifiable risk factors for mental illness and suicidal behaviour and are common in terminal illness. Our objective was to summarise available literature to clarify whether these and related measures of social connectedness might contribute to requests for EAS. METHODS: We conducted a pre-registered (PROSPERO CRD42019160508) systematic review and narrative synthesis of quantitative literature investigating associations between social connectedness and a) requested/actual EAS, b) attitudes towards EAS, and c) a desire for hastened death (DHD) by searching six databases (PsycINFO, MEDLINE, EMBASE, Scopus, Web of Science, Google Scholar) from inception to November 2022, rating eligible peer-reviewed, empirical studies using the QATSO quality assessment tool. RESULTS: We identified 37 eligible studies that investigated associations with a) requested/actual EAS (n = 9), b) attitudes to EAS (n = 16), and c) DHD (n = 14), with limited overlap, including 17,359 participants. The majority (62%) were rated at medium/high risk of bias. Focussing our narrative synthesis on the more methodologically sound studies, we found no evidence to support an association between different constructs of social connectedness and requested or actual EAS, and very little evidence to support an association with attitudes to EAS or an association with DHD. CONCLUSIONS: Our findings for all age groups are consistent with a those of a previous systematic review focussed on older adults and suggest that poor social connectedness is not a clear risk factor for EAS or for measures more distally related to EAS. However, we acknowledge low study quality in some studies in relation to sampling, unvalidated exposure/outcome measures, cross-sectional design, unadjusted analyses, and multiple testing. Clinical assessment should focus on modifying established risk factors for suicide and EAS, such as hopelessness and depression, as well as improving any distressing aspects of social disconnectedness to improve quality of life. FUNDING: UKRI, NIHR.

Physicians' views on the role of relatives in euthanasia and physician-assisted suicide decision-making: a mixed-methods study among physicians in the Netherlands.

BACKGROUND: Relatives have no formal position in the practice of euthanasia and physician-assisted suicide (EAS) according to Dutch legislation. However, research shows that physicians often involve relatives in EAS decision-making. It remains unclear why physicians do (not) want to involve relatives. Therefore, we examined how many physicians in the Netherlands involve relatives in EAS decision-making and explored reasons for (not) involving relatives and what involvement entails. METHODS: In a mixed-methods study, 746 physicians (33% response rate) completed a questionnaire, and 20 were interviewed. The questionnaire included two statements on relatives' involvement in EAS decision-making. Descriptive statistics were used, and multivariable logistic regression analyses to explore characteristics associated with involving relatives. In subsequent interviews, we explored physicians' views on involving relatives in EAS decision-making. Interviews were thematically analysed. RESULTS: The majority of physicians want to know relatives' opinions about an EAS request (80%); a smaller group also takes these opinions into account in EAS decision-making (35%). Physicians who had ever received an explicit EAS request were more likely to want to know opinions and clinical specialists and elderly care physicians were more likely to take these opinions into account. In interviews, physicians mentioned several reasons for involving relatives: e.g. to give relatives space and help them in their acceptance, to tailor support, to be able to perform EAS in harmony, and to mediate in case of conflicting views. Furthermore, physicians explained that relatives' opinions can influence the decision-making process but cannot be a decisive factor. If relatives oppose the EAS request, physicians find the process more difficult and try to mediate between patients and relatives by investigating relatives' objections and providing appropriate information. Reasons for not taking relatives' opinions into account include not wanting to undermine patient autonomy and protecting relatives from a potential burdensome decision. CONCLUSIONS: Although physicians know that relatives have no formal role, involving relatives in EAS decision-making is common practice in the Netherlands. Physicians consider this important as relatives need to continue with their lives and may need bereavement support. Additionally, physicians want to perform EAS in harmony with everyone involved. However, relatives' opinions are not decisive.

[Suicide prevention in old age : Importance of depressive disorders and implications for the discussion on assisted suicide]. / Suizidprävention im Alter : Bedeutung depressiver Störungen und Implikationen für die Diskussion um den assistierten Suizid.

This article gives an overview of possibilities for suicide prevention in old age, with an emphasis on depression. A broad range of approaches are available, which are described differentiated into universal, selective and indicated strategies. In Germany the working group "Old people" of the National Suicide Prevention Program (NaSPro) has worked out these strategies in a differentiated way and with respect to the international discussions. The influence of the debate on assisted suicide and the influence of cognitive changes on suicidal ideation in old age are discussed. A further large need for concrete measures and also the presence of large gaps in the care structures are determined.