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.

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.

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.

[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.

Examining assisted suicide and euthanasia through the lens of healthcare quality.

Many people on both sides of the debate to legalise physician-hastened death are motivated by compassion and a desire to provide better end of life care for others. Assisted dying may include euthanasia and/or assisted suicide (EAS). It is legal in some jurisdictions and under debate in others including Ireland. EAS is a complex, sensitive and can be an emotive issue; detailed and nuanced examination of the subject is needed. To enhance this discussion, we examine EAS through the lens of quality. In examining EAS from this stance, we consider the action, along with the outcomes, the impact of the outcomes from other jurisdictions with legalised EAS, alongside the risks and the balancing measures used, in addition to considering the intervention itself. Progressive expansion of eligibility for EAS has occurred over time in the Netherlands, Belgium and Canada. Given the complexity of assessing coercion, the risks to persons in vulnerable groups (including older persons, persons with mental health conditions and persons with disabilities), the progressive expansion of eligibility for EAS, the lack of safety and the undermining of suicide prevention strategies, the current law is most protective of persons in vulnerable groups in the interest of social justice. Person-centred and compassionate care needs be prioritised with greater access and equitable access to primary and specialist palliative care and mental health care for persons with incurable and terminal illnesses and support for caregivers allowing patients to die naturally with optimised symptom control.

Walking Alongside: Views of Family Members on Medical Assistance in Dying for Mental Illness as the Sole Underlying Medical Condition.

Medical assistance in dying (MAiD) was introduced into Canadian federal legislation in 2016. Mental illness as the sole underlying medical condition (MI-SUMC) is currently excluded from eligibility; such exclusion is scheduled to expire on March 17, 2024. Irremediability, capacity, quality of life, autonomy, family involvement, and healthcare system constraints have been debated intensively. Recent studies have not explored the views of family members of persons with mental illness on MAiD MI-SUMC. This study aimed to fill this knowledge gap. Twenty-five Ontario residents who had a loved one with mental illness participated. A persona-scenario exercise was designed to explore participants' views on MAiD MI-SUMC in hypothetical situations. Reflexive thematic analysis was used to analyze the data. A lived experience-advisory panel was engaged throughout the study. Seven themes were developed: Witnessing suffering; A road with barriers and limitations; Societal barriers; The unknowns of mental illness; Individual choices: the life or death that a person wants; MAiD MI-SUMC as an acceptable choice when suffering cannot be relieved with available treatments and supports; and The emotional outcome. Participants constructed their views based on their experience of supporting a loved one with mental illness. MAiD MI-SUMC was perceived as a multifaceted issue, whose acceptability and potential introduction required a concurrent exploration and discussion of the challenges arising due to limitations of the healthcare system, the opportunities and limits to family involvement, and the value of patient autonomy.

Medical Assistance in Dying in Neurology.

An increasing number of jurisdictions have legalized medical assistance in dying (MAID) with significant variation in the procedures and eligibility criteria used. In the United States, MAID is available for persons with terminal illnesses but is frequently sought by persons with neurologic conditions. Persons with conditions that cause cognitive impairment, such as Alzheimer dementia, are often ineligible for MAID, as their illness is not considered terminal in its early stages, whereas in later stages, they may have impaired decision-making capacity.

Medical assistance in dying in Canada: A scoping review on the concept of suffering.

OBJECTIVES: Medical Assistance in Dying (MAiD) has been legal in Canada since June 2016. A person can receive MAiD if their suffering cannot be relieved under conditions that they consider acceptable. Informed consent requires that the person requesting MAiD has received all the information needed to make their decision; that is, medical diagnosis and prognosis, available treatments including palliative care. The evaluation of unbearable suffering is known to be challenging as suffering is often psychological, existential, and social in nature. While interventions to relieve suffering exist, it is unclear how suffering is assessed and addressed in the literature on MAiD practice. No scoping review exists on the topic in Canada. The aim of this study was to understand how the concept of suffering was approached within the Canadian MAiD grey (GL) and scientific (peer-reviewed) literature (SL), specifically: 1- How suffering is defined and assessed in the context of MAiD in Canada and 2- Which interventions in response to suffering are recommended within the process of obtaining informed consent for MAiD and throughout the process of MAiD itself. METHODS: A scoping review was conducted based on PRISMA-SR guidelines. SL articles (N = 1027) were identified from a review of 6 databases and GL documents (N = 537) were obtained from the provinces of Quebec, Ontario and British Columbia. Documents were analyzed using NVivo with coding by two-raters and continuous team discussions. RESULTS: A multidimensional definition of suffering, akin to the concept of total pain, is used. The assessment of suffering is based upon patients' reports. Tools to aid in the assessment are not comprehensively covered. Specific interventions to address suffering were often focused on active listening and the management of physical symptoms. No specific interventions were mentioned and there was no reference to clinical practice guidelines in the grey literature to address other components of suffering. The use of a multidisciplinary approach is suggested without specifying the nature of involvement. CONCLUSIONS: Our review indicates that published guidelines of MAID assessments could include clearer structure around the assessment and management of suffering, with suggestions of tools that may help clarify types of suffering and reference to clinical practice guidelines and interventions to holistically attend to patient suffering with an attention on non-physical symptoms. Guidelines would benefit from clearer explanations of how members of an interdisciplinary teams could be coherently coordinated.

Ketamine for depression: a potential role in requests for Medical Aid in Dying?

Medical Aid in Dying (MAiD) is the act of a healthcare provider ending a patient's life, at their request, due to unbearable suffering from a grievous and incurable disease. Access to MAiD has expanded in the last decade and, more recently, it has been made available for psychiatric illnesses in a few countries. Recent studies have found that such psychiatric requests are rapidly increasing and primarily involve mood disorders as the primary condition. Nevertheless, MAiD for psychiatric disorders is associated with significant controversy and debate, especially regarding the definition and determination of irremediability - that a given patient lacks any reasonable prospect for recovery. In this article, we report the case of a Canadian patient who was actively requesting Medical Assistance in Dying for severe and prolonged treatment-resistant depression until she experienced remarkable benefits from a course of intravenous ketamine infusions. To our knowledge, this is the first report of ketamine or any other intervention yielding remission in a patient who would have otherwise likely been eligible for MAiD for depression. We discuss implications for the evaluation of similar requests and, more specifically, why a trial of ketamine warrants consideration.

Existential suffering as a motive for assisted suicide: Difficulties, acceptability, management and roles from the perspectives of Swiss professionals.

BACKGROUND: Existential suffering is often a part of the requests for assisted suicide (AS). Its definitions have gained in clarity recently and refer to a distress arising from an inner realization that life has lost its meaning. There is however a lack of consensus on how to manage existential suffering, especially in a country where AS is legal and little is known about the difficulties faced by professionals confronted with these situations. OBJECTIVES: To explore the perspectives of Swiss professionals involved in end-of-life care and AS on the management of existential suffering when it is part of AS requests, taking into account the question of roles, as well as on the difficulties they encounter along the way and their views on the acceptability of existential suffering as a motive for AS. METHODS: A qualitative study based on face-to-face interviews was performed among twenty-five participants from the fields of palliative and primary care as well as from EXIT right-to-die organization. A semi-structured interview guide exploring four themes was used. Elements from the grounded theory approach were applied. RESULTS: Almost all participants reported experiencing difficulties when facing existential suffering. Opinions regarding the acceptability of existential suffering in accessing AS were divided. Concerning its management, participants referred to the notion of being present, showing respect, seeking to understand the causes of suffering, helping give meaning, working together, psychological support, spiritual support, relieving physical symptoms and palliative sedation. CONCLUSION: This study offers a unique opportunity to reflect on what are desirable responses to existential suffering when it is part of AS requests. Existential suffering is plural and implies a multiplicity of responses as well. These situations remain however difficult and controversial according to Swiss professionals. Clinicians' education should further address these issues and give professionals the tools to better take care of these people.

[Euthanasia in mental health care: qualitative study exploring the opinion of psychiatrists]. / Euthanasie in de ggz: kwalitatief onderzoek naar de mening van psychiaters.

BACKGROUND: There is a decrease in the degree to which treating psychiatrists are willing to perform euthanasia or assisted suicide themselves. There is a guideline that considers it desirable the patient’s own psychiatrist takes up the different phases of a euthanasia request. At the same time, there is an increase in applications to the Euthanasia Expertise Center by patients with a request for euthanasia on the basis of psychological suffering, resulting in a long waiting list. AIM: To explore whether psychiatrists are prepared to investigate and carry out a request for euthanasia, and to determine which factors influence this. METHOD: We held in-depth interviews with 13 psychiatrists working at mental healthcare institutions. RESULTS: Psychiatrists felt incompetent in going through the euthanasia process. They found investigating a request for euthanasia difficult in the context of their therapeutic relationship and the position of hope and perspective they wished to hold. Psychiatrists with experiences with the capriciousness of euthanasia wishes had a greater reluctance to perform euthanasia in the future. CONCLUSION: Investigating a wish for euthanasia within the therapeutic relationship is complex for psychiatrists. There is a feeling of incompetence, ignorance and inexperience. There seems to be a great reluctance to euthanasia by the treating psychiatrist.

The impact on patients of objections by institutions to assisted dying: a qualitative study of family caregivers' perceptions.

BACKGROUND: Voluntary assisted dying became lawful in Victoria, the first Australian state to permit this practice, in 2019 via the Voluntary Assisted Dying Act 2017 (Vic). While conscientious objection by individual health professionals is protected by the Victorian legislation, objections by institutions are governed by policy. No research has been conducted in Victoria, and very little research conducted internationally, on how institutional objection is experienced by patients seeking assisted dying. METHODS: 28 semi-structured interviews were conducted with 32 family caregivers and one patient about the experience of 28 patients who sought assisted dying. Participants were interviewed during August-November 2021. Data from the 17 interviews (all with family caregivers) which reported institutional objection were analysed thematically. RESULTS: Participants reported institutional objection affecting eligibility assessments, medication access, and taking the medication or having it administered. Institutional objection occurred across health settings and was sometimes communicated obliquely. These objections resulted in delays, transfers, and choices between progressing an assisted dying application and receiving palliative or other care. Participants also reported objections causing adverse emotional experiences and distrust of objecting institutions. Six mediating influences on institutional objections were identified: staff views within objecting institutions; support of external medical practitioners and pharmacists providing assisted dying services; nature of a patient's illness; progression or state of a patient's illness; patient's geographical location; and the capability and assertiveness of a patient and/or caregiver. CONCLUSIONS: Institutional objection to assisted dying is much-debated yet empirically understudied. This research found that in Victoria, objections were regularly reported by participants and adversely affected access to assisted dying and the wider end-of-life experience for patients and caregivers. This barrier arises in an assisted dying system that is already procedurally challenging, particularly given the limited window patients have to apply. Better regulation may be needed as Victoria's existing policy approach appears to preference institutional positions over patient's choice given existing power dynamics.

MAiD for geriatric syndromes: Special considerations.

Medical Assistance in Dying (MAiD) brings unique considerations in the context of geriatric syndromes such as frailty and cognitive or functional impairment. These conditions are associated with complex vulnerability across health and social domains and often do not have predicable trajectories or responses to healthcare interventions. In this article, we focus on four categories of gaps in care that are particularly relevant for MAiD in geriatric syndromes, namely, inadequacies in access to medical care, appropriate advance care planning, social supports, and funding for supportive care. We conclude by arguing that appropriately situating MAiD in the context of care for older adults requires careful consideration of these gaps in care to enable real, robust, and respectful healthcare choices for people living with geriatric syndromes and approaching end-of-life.

[End of life and cancer: Understanding the ethical issues of voluntary assisted dying]. / Fin de vie et cancer : comprendre en 2023 les enjeux de la demande d'aide active à mourir.

In its advice No. 139 entitled "Ethical issues related to end-of-life situations: autonomy and solidarity", the National Ethics Committee opens for the first time in France the way to a possible active assistance in dying (assisted suicide or euthanasia). Such an ethical, legal and medical evolution would have major consequences in the palliative approach proposed to cancer patients. This clarification aims to enlighten the reflection, in a very complex societal debate. About thirty issues of the supporters and opponents of the legalization of active assistance in dying are first detailed. The values of autonomy and freedom are confronted with those of medical care and solidarity; the individual approach clashes with the collective interest; the interest of the patient and the place of the physician are considered from different angles. Finally, we propose a reflective path, in order to examine step by step the stakes, by examining successively the diagnosis of end of life conditions in France, then the questions asked and the proposals about: suicide; the principle of active assistance in dying; the procedures for reviewing a request for active assistance in dying; the modalities of implementation (assisted suicide or euthanasia); the place of the physician as agent of this decision. Only an analytical approach will make it possible to avoid amalgams and cognitive biases in a debate that closely mixes rationality and emotions.

A Systematic Review of Stakeholder Perspectives of Dignity and Assisted Dying.

INTRODUCTION: The debate on assisted dying and its components, euthanasia and physician-assisted suicide has evolved with the emergence of the right to dignity and the wish to hasten death (WTHD). Whilst shaped by local legal and sociocultural considerations, appreciation of how patients, healthcare professionals and lawmakers relate notions of dignity to self-concepts of personhood and the desire for assisted dying will better inform and direct support of patients. METHODS: Guided by the Systematic Evidence Based Approach, a systematic scoping review (SSR in SEBA) on perspectives of dignity, WTHD and personhood featured in PubMed, Embase, PsycINFO, Cochrane Database of Systematic Reviews, CINAHL, Scopus databases and four key Palliative Care journals was conducted. The review hinged on the following questions: "what is the relationship between dignity and the wish to hasten death (WTHD) in the assisted dying debate?", "how is dignity conceptualised by patients with WTHD?" and "what are prevailing perspectives on the role of assisted dying in maintaining a dying patient's dignity?" RESULTS: 6947 abstracts were identified, 663 full text articles reviewed, and 88 articles included. The four domains identified include 1) concepts of dignity through the lens of the Ring Theory of Personhood (RToP) including their various definitions and descriptions; 2) the relationship between dignity, WTHD and assisted dying with loss of dignity and autonomy foregrounded; 3) stakeholder perspectives for and against assisted dying including those of patient, healthcare provider and lawmaker; and 4) other dignity-conserving measures as alternatives to assisted dying. CONCLUSION: Concepts of dignity constantly evolve throughout the patient's end of life journey. Understanding when and how these concepts of personhood change and trigger the fear of a loss of dignity or intractable suffering could direct timely, individualised and appropriate person-centred dignity conserving measures. We believe an RToP-based tool could fulfil this role and further study into the design of this tool is planned.

Evaluating requests for physician-assisted suicide. A survey among German oncologists.

BACKGROUND: Cancer patients form a notable proportion of requestors for physician-assisted suicide (PAS). This manuscript provides data on German oncologists' views concerning due criteria for the assessment of requests for PAS and quality assurance. METHODS: The German Society of Haematology and Medical Oncology (DGHO) has conducted a survey among its members to elicit data about practices and views on regulating PAS in March 2021. Descriptive analysis and bivariate logistic regression of quantitative data on socio-demographic and other determinants possibly associated with respondents' views on PAS as well as content analysis of qualitative data were performed. RESULTS: About 57.1% (n = 425) of respondents (n = 745) indicated that they had been asked for information about PAS by patients. Information about palliative (92.7%; n = 651) and psychological care options (85.6%; n = 598) was deemed most important in cases of requests for PAS. More than half of the respondents (57.6%; n = 429) were in favour of a formal expert assessment of decisional capacity and about 33.4% (n = 249) favoured a time span of 14 days between the counselling and prescription of a lethal drug. There was no association between participants who received more requests and a preference for disclosing publicly their willingness to assist with suicide. A majority of respondents requested measures of quality assurance (71.3%; n = 531). CONCLUSION: According to respondents' views, the regulation of PAS will require diligent procedures regarding the assessment of decisional capacity and counselling. The findings suggest that the development of adequate and feasible criteria to assess the quality of practices is an important task.

Neuro-oncology clinicians' perspectives on factors affecting brain cancer patients' access to medical assistance in dying: A qualitative study.

In most jurisdictions where medical assistance in dying (MAiD) is legal, patients must have decision-making capacity. Brain cancer often damages the cognitive networks required to maintain decision-making capacity. Using qualitative methodology guided by a relational ethics conceptual framework, this study explored neuro-oncology clinicians' perspectives on access to and eligibility for MAiD for patients diagnosed with brain cancer. We interviewed 24 neuro-oncology clinicians from 6 countries. Participants described the unique challenges facing brain cancer patients, potentially resulting in their inequitable access to MAiD. The findings highlight the importance of early end-of-life conversations, advance care planning, and access to end-of-life treatment options.