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.

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.

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.

Medical Aid in Dying: An Overview of Care and Considerations for Patients With Cancer.

BACKGROUND: Medical aid in dying (MAID) is increasingly becoming a legal option for patients with terminal illness who desire greater control over how they end their life. The majority of patients who pursue this option are those with terminal cancer. OBJECTIVES:  This article provides foundational knowledge on MAID, including key considerations for nurses practicing in states where MAID is legalized. METHODS:  Available research and data on MAID are summarized, as well as clinical recommendations for patient education, counseling, and supportive care. A case study is included to illustrate relevant concepts. FINDINGS:  MAID is becoming an accepted practice for patients with terminal cancer through increasing legislation across the United States. Nursing knowledge of critical considerations for patients with terminal cancer who choose to pursue MAID is integral to the provision of optimal clinical oncology care at the end of life.

Debating Euthanasia and Physician-Assisted Death in People with Psychiatric Disorders.

PURPOSE OF REVIEW: Over the last 30 years, medical assistance in dying (MAiD) including euthanasia (EU) and physician-assisted death (or suicide, PAS) has become the center of a large debate, particularly when these practices have involved people with psychiatric illness, including resistant depression, schizophrenia, personality, or other severe psychiatric disorders. We performed a review utilizing several databases, and by including the most relevant studies in full journal articles investigating the problem of MAiD in patients with psychiatric disorders but not in physical terminal conditions (non-terminal, MAiD-NT). RECENT FINDINGS: Literature has shown that a small percentage of people with psychiatric disorders died by MAiD-NT in comparison with patients with somatic diseases in terminal clinical conditions (e.g., cancer, AIDS). However, the problem in the field is complex and not solved yet as confirmed by the fact that only a few countries (e.g., the Netherlands, Belgium, Luxemburg) have legalized MAiD-NT for patients with psychiatric disorders, while most have maintained the practices accessible only to people with somatic disease in a terminal phase. Also, how to make objective the criterion of irremediability of a mental disorder; how to balance suicide prevention with assisted suicide; how to avoid the risk of progressively including in requests for MAiD-NT vulnerable segments of the population, such as minors, elderly, or people with dementia, in a productive-oriented society, are some of the critical points to be discussed. The application of MAiD-NT in people with psychiatric disorders should be further explored to prevent end-of-life rights from contradicting the principles of recovery-oriented care.

Desire to Die Statements in the Era of Voluntary Assisted Dying: An Audit of Patients Known to a Victorian Consultation-Liaison Palliative Care Service.

Objectives: In the new era of voluntary assisted dying (VAD) legislation in Australia, this study aimed to explore (1) underlying reasons for desire to die statements (DTDSs), (2) clinician responses to DTDSs and (3) whether DTDSs were a true request for VAD. Methods: Clinical audit using an existing prospectively collected quality assurance database, supplemented by electronic medical records. Patients known to a consultation-liaison palliative care service who expressed a DTDS between October 2019 and September 2020 were included. Results: Forty-one patients were included; 29 (71%) were male, 29 (71%) had a malignancy and 31 (76%) expressed a DTDS more than once. Uncontrolled psychological symptoms were present more often than physical (n = 30 vs 19 [73% vs 46%]), yet physical symptoms were addressed more frequently than psychological (80% vs 63% of the time). Based on available data, the VAD assessment process was commenced by 7 patients, and death by VAD occurred for 2 patients. Conclusions: In our study, DTDSs were complex, multi-layered requests that more commonly reflected psychological rather than physical suffering. Though VAD is now legally possible, a DTDS was not always synonymous with a request for VAD. Key to responding to these requests are high levels of clinician confidence and communication skills. Training in this area remains critical for the experience of both patients and clinicians.

Suffering is not enough: Assisted dying for people with mental illness.

Persons with mental disorders who are resistant to evidence-based treatment can be referred to as patients with severe and persistent mental illness (SPMI). Some patients with SPMI develop a strong wish for assisted dying. Switzerland has the longest history of non-medicalized assisted dying, which is considered a civil right even in non-pathological situations. Public debate in Switzerland about the issue of suffering in the context of assisted dying is current and ongoing. The Swiss Academy of Medical Sciences recently revised its end-of-life policy and specified intolerable suffering due to severe illness or functional limitations (and acknowledged as such by a physician) as a core criterion for assisted dying. We argue that suffering is a necessary but insufficient condition for assisted dying, and that the criteria should also include decision-making capacity and refractoriness of suffering. We further contend that suffering is a subjective experience that can only be quantified by the patient and cannot be objectively compared across individuals. Some patients with SPMI and refractory suffering who maintain decision-making capacity will meet the criteria for assisted dying. We advocate for palliative psychiatric care that relinquishes any disease-modifying therapy, accepts limited survival chances, and focuses on measures that enhance the patient's quality of life, understood in a very broad sense beyond only health-related quality of life. This approach should also relieve suffering as much as possible while remaining open to the possibility of assisted dying following conscientious assessment of the criteria.

Role and responsibility of oncologists in assisted suicide. Practice and views among members of the German Society of Haematology and Medical Oncology.

BACKGROUND: Physician-assisted suicide (PAS) is a controversial practice and regulatory frameworks differ regarding assigned physicians' roles. This study explores clinical experience and views of German oncologists concerning ethically and legally relevant aspects of PAS after change of the law. MATERIALS AND METHODS: An online survey was conducted among members of the German Society of Haematology and Medical Oncology (DGHO) in March 2021. Descriptive analysis, bivariate and multivariable logistic regression of quantitative data on determinants related to (un)willingness to assist with suicide as well qualitative analysis of free-text comments were carried out. RESULTS: Seven hundred and forty-five of 3588 DGHO members responded (20.8%). Of these, 29.9% reported requests for a lethal drug and 3.0% (n = 22) reported to have assisted with suicide. Almost half of them (47.0%, n = 350) objected to providing PAS, whereas 45.9% indicated a willingness at least under certain conditions. Of those respondents who did not object to PAS, 25.4% would also consider assistance if those willing to die had a psychiatric disease and 10.2% if requestors had no disease at all. A majority viewed a role for physicians regarding different tasks associated with assisted suicide. Respondents with <10 years of professional experience, working in hospital with religious affiliation and with subspecialisation in palliative care were significantly less frequently willing to assist suicide. CONCLUSIONS: Respondents are divided in their personal attitudes towards PAS but a majority supports involvement of physicians regarding different tasks related to assisted suicide. Data about the practice and envisaged professional role may inform development of an acceptable ethico-legal framework for a controversial practice.

Neuro-Oncology Clinicians' Attitudes and Perspectives on Medical Assistance in Dying.

BACKGROUND: Medical assistance in dying (MAiD), also known as physician-assisted death, is currently legal in several locations across the globe. Brain cancer or its treatments can lead to cognitive impairment, which can impact decision-making capacity for MAiD. OBJECTIVE: We sought to explore neuro-oncology clinicians' attitudes and perspectives on MAiD, including interpretation of decision-making capacity for patient MAiD eligibility. METHODS: An online survey was distributed to members of national and international neuro-oncology societies. We asked questions about decision-making capacity and MAiD, in part using hypothetical patient scenarios. Multiple choice and free-text responses were captured. RESULTS: There were 125 survey respondents. Impaired cognition was identified as the most important factor that would signal a decline in patient capacity. At least 26% of survey respondents had moral objections to MAiD. Respondents thought that different hypothetical patients had capacity to make a decision about MAiD (range 18%-58%). In other hypothetical scenarios, fewer clinicians were willing to support a MAiD decision for a patient with an oligodendroglioma (26%) vs. glioblastoma (41%-70%, depending on the scenario). Time since diagnosis, performance status, and patient age seemed to affect support for MAiD decisions (Fisher's exact P-values 0.007, < 0.001, and 0.049, respectively). CONCLUSION: While there are differing opinions on the moral permissibility of MAiD in general and for neuro-oncology patients, most clinicians agree that capacity must be assessed carefully before a decision is made. End-of-life discussions should happen early, before the capacity is lost. Our results can inform assessments of patient capacity in jurisdictions where MAiD is legal.

Physician attitudes to voluntary assisted dying: a scoping review.

BACKGROUND: Voluntary assisted dying (VAD) became legal in the Australian state of Victoria on 19 June 2019 and will be legal in Western Australia from 2021. Other Australian states are progressing similar law reform processes. In Australia and internationally, doctors are central to the operation of all legal VAD regimes. It is broadly accepted that doctors, as a profession, are less in favour of VAD law reform than the rest of the community. To date, there has been little analysis of the factors that motivate doctors' support or opposition to legalised VAD in Australia. AIM: To review all studies reporting the attitudes of Australian doctors regarding the legalisation of VAD, including their willingness to participate in it, and to observe and record common themes in existing attitudinal data. DESIGN: Scoping review and thematic analysis of qualitative and quantitative data. DATA SOURCES: CINAHL, Embase, Scopus, PubMed and Informit were searched from inception to June 2019. RESULTS: 26 publications detailing 19 studies were identified. Thematic analysis of quantitative and qualitative findings was performed. Three overarching themes emerged. 'Attitudes towards regulation' encompassed doctors' orientation towards legalisation, the shortcomings of binary categories of support or opposition and doctors' concerns about additional regulation of their professional practices. 'Professional and personal impact of legalisation' described tensions between palliative care and VAD, and the emotional and social impact of being providers of VAD. 'Practical considerations regarding access' considered doctors' concerns about eligibility criteria and their willingness to provide VAD. CONCLUSION: A detailed understanding of medical perspectives about VAD would facilitate the design of legislative models that take better account of doctors' concerns. This may facilitate their greater participation in VAD and help address potential access issues arising from availability of willing doctors.

Medical assistance in dying: just an ethical or legal issue?

According to current vital statistics suicide appears as a growing public health problem in most Western countries. However, suicide is rarely discussed in scientific journals, possibly because of a persisting moral stigma. As a consequence, the diverse bases of suicidal behavior are little understood while the role of Chronic-Degenerative Terminal Diseases (CDTD) has been poorly investigated. In the present study, the topic of suicidality was addressed in a clinical, holistic, perspective in an attempt to clarify how, in some chronically ill patients, the decision to end their own life is taken independently from mental disorders, being conversely, the expression of a rational psychological pattern which copes with the burden of chronic illnesses to become an integral part of their clinical spectrum. An assisted suicide (AS) request should therefore be considered from a clinical point of view and not only as an ethical or legal issue, in fact a holistic evaluation of the patient's situation must be performed, conferring the decisions making process a further in-depth line of thinking. In this study we first examined the relationship between suicide and CDTD as reported in the medical literature; then we reviewed the psychological theories which allegedly explain suicidal behavior; finally we discussed the possible role of a full-fledged palliative care in preventing suicide and in managing death requests by CDTD patients.

End-of-life decision making by Austrian physicians - a cross-sectional study.

BACKGROUND: Austria has recently been embroiled in the complex debate on the legalization of measures to end life prematurely. Empirical data on end-of-life decisions made by Austrian physicians barely exists. This study is the first in Austria aimed at finding out how physicians generally approach and make end-of-life therapy decisions. METHODS: The European end-of-life decisions (EURELD) questionnaire, translated and adapted by Schildmann et al., was used to conduct this cross-sectional postal survey. Questions on palliative care training, legal issues, and use of and satisfaction with palliative care were added. All Austrian specialists in hematology and oncology, a representative sample of doctors specialized in internal medicine, and a sample of general practitioners, were invited to participate in this anonymous postal survey. RESULTS: Five hundred forty-eight questionnaires (response rate: 10.4%) were evaluated. 88.3% of participants had treated a patient who had died in the previous 12 months. 23% of respondents had an additional qualification in palliative medicine. The cause of death in 53.1% of patients was cancer, and 44.8% died at home. In 86.3% of cases, pain relief and / or symptom relief had been intensified. Further treatment had been withheld by 60.0%, and an existing treatment discontinued by 49.1% of respondents. In 5 cases, the respondents had prescribed, provided or administered a drug which had resulted in death. 51.3% of physicians said they would never carry out physician-assisted suicide (PAS), while 30.3% could imagine doing so under certain conditions. 38.5% of respondents supported the current prohibition of PAS, 23.9% opposed it, and 33.2% were undecided. 52.4% of physicians felt the legal situation with respect to measures to end life prematurely was ambiguous. An additional qualification in palliative medicine had no influence on measures taken, or attitudes towards PAS. CONCLUSIONS: The majority of doctors perform symptom control in terminally ill patients. PAS is frequently requested but rarely carried out. Attending physicians felt the legal situation was ambiguous. Physicians should therefore receive training in current legislation relating to end-of-life choices and medical decisions. The data collected in this survey will help political decision-makers provide the necessary legal framework for end-of-life medical care.

Death without distress? The taboo of suffering in palliative care.

Palliative care (PC) names as one of its central aims to prevent and relieve suffering. Following the concept of "total pain", which was first introduced by Cicely Saunders, PC not only focuses on the physical dimension of pain but also addresses the patient's psychological, social, and spiritual suffering. However, the goal to relieve suffering can paradoxically lead to a taboo of suffering and imply adverse consequences. Two scenarios are presented: First, PC providers sometimes might fail their own ambitions. If all other means prove ineffective terminal sedation can still be applied as a last resort, though. However, it may be asked whether sedating a dying patient comes close to eliminating suffering by eliminating the sufferer and hereby resembles physician-assisted suicide (PAS), or euthanasia. As an alternative, PC providers could continue treatment, even if it so far prove unsuccessful. In that case, either futility results or the patient might even suffer from the perpetuated, albeit fruitless interventions. Second, some patients possibly prefer to endure suffering instead of being relieved from it. Hence, they want to forgo the various bio-psycho-socio-spiritual interventions. PC providers' efforts then lead to paradoxical consequences: Feeling harassed by PC, patients could suffer even more and not less. In both scenarios, suffering is placed under a taboo and is thereby conceptualised as not being tolerable in general. However, to consider suffering essentially unbearable might promote assisted dying not only on an individual but also on a societal level insofar as unbearable suffering is considered a criterion for euthanasia or PAS.