This study explores the perceptions of Norwegian nurses who have received assisted dying requests from terminally ill patients. Assisted dying is illegal in Norway, while in some countries, it is an option. Nurses caring for terminally ill patients may experience ethical challenges by receiving requests for euthanasia and assisted suicide. We applied a qualitative research design with a phenomenological hermeneutic approach using open individual interviews. A total of 15 registered nurses employed in pulmonary (...) and oncology wards of three university hospitals and home care in one municipality were recruited. Four themes emerged from the analysis: (1) unprepared for the request; (2) meeting direct, indirect, and nonverbal requests; (3) working in a gray zone, and (4) feeling alone and powerless. The study found that nurses were unsure how to handle such requests due to professional uncertainty about assisted dying. Working in an environment where the topic is taboo made nurses morally uncertain, and some perceived this as moral distress. The hospital chaplain played a significant role in providing support to these nurses. (shrink)

When medical assistance in dying (MAiD) was legalized in Canada in June 2016, the question of allowing decisionally capable persons to make advance requests in anticipation of later incapacity was reserved for further consideration during the mandatory parliamentary review originally scheduled to begin in June 2020 (but since delayed by COVID-19). In its current form the legislation does not permit such requests, since it stipulates that at the time at which the procedure is to be administered the (...) patient must give “express consent” to receiving it. Since express consent presupposes decisional capacity, this requirement rules out administering MAiD to a patient who has lost capacity. Amendments to the legislation passed by Parliament in March 2021 open the door slightly by allowing advance requests by patients after they have been approved for MAiD, if they fear losing capacity before the procedure can be administered. But this provision would apply only to patients whose natural death was deemed to be “reasonably foreseeable”, and would continue to exclude (a) requests made after diagnosis of a “grievous and irremediable medical condition” but in advance of approval for MAiD, and (b) requests made before such a diagnosis. My aim in this paper is twofold: to explore the ethical and legal issues concerning advance requests for MAiD, and to argue for expanding provision for such requests to include both of these further scenarios. (shrink)

In the paper, titled ‘Choosing death in unjust conditions: hope, autonomy and harm reduction,’ Wiebe and Mullin argue that people living in unjust social conditions are sufficiently autonomous to request medical assistance in dying (MAiD). The ethical issue is that some people may request MAiD primarily because of unjust social conditions, not their illness, disease, disability or decline in capability. It is easily agreed that people living in unjust social conditions can be autonomous. Nevertheless, Wiebe and Mullin fail to (...) appreciate that autonomy is only a necessary condition for MAiD. In addition to autonomy, one must decide that providing assisted dying to a patient because they are living in unjust social conditions is ethical. Central to making this ethical decision is the principle of non-maleficence, famously articulated as ‘do no harm.’ The authors admit that performing MAiD in response to unjust social circumstances is harmful, but they justify this harmful action by appealing to the principle of harm reduction. A fundamental flaw of their approach is that it relies on the legislative definition of intolerable suffering, which is based on circular reasoning and given that 99.2% of patients that have applied for MAiD satisfied this criterion, it is essentially equivalent to no standard/criterion. Canadian society is struggling with the ethical implications of its permissive MAiD programme, and, fundamental to this debate, will be determining the proper balance between autonomy and non-maleficence for people living in unjust social conditions. (shrink)

In May 2013 a new Assisted Dying Bill was tabled in the House of Lords and is currently scheduled for a second reading in May 2014. The Bill was informed by the report of the Commission on Assisted Dying which itself was informed by evidence presented by invited experts.

Some form of assisted dying (voluntary euthanasia and/or assisted suicide) is lawful in the Netherlands, Belgium, Oregon, and Switzerland. In order to be lawful in these jurisdictions, a valid request must precede the provision of assistance to die. Non-adherence to the criteria for valid requests for assisted dying may be a trigger for civil and/or criminal liability, as well as disciplinary sanctions where the assistor is a medical professional. In this article, we review the (...) criteria and evidence in respect of requests for assisted dying in the Netherlands, Belgium, Oregon, and Switzerland, with the aim of establishing whether individuals who receive assisted dying do so on the basis of valid requests. We conclude that the evidence suggests that individuals who receive assisted dying in the four jurisdictions examined do so on the basis of valid requests and third parties who assist death do not act unlawfully. However, further research on the elements that may undermine the validity of requests for assisted dying is warranted. More research on the reasons why requests for assisted dying are refused is also desirable. (shrink)

Some form of assisted dying (voluntary euthanasia and/or assisted suicide) is lawful in the Netherlands, Belgium, Oregon, and Switzerland. In order to be lawful in these jurisdictions, a valid request must precede the provision of assistance to die. Non-adherence to the criteria for valid requests for assisted dying may be a trigger for civil and/or criminal liability, as well as disciplinary sanctions where the assistor is a medical professional. In this article, we review the (...) criteria and evidence in respect of requests for assisted dying in the Netherlands, Belgium, Oregon, and Switzerland, with the aim of establishing whether individuals who receive assisted dying do so on the basis of valid requests. We conclude that the evidence suggests that individuals who receive assisted dying in the four jurisdictions examined do so on the basis of valid requests and third parties who assist death do not act unlawfully. However, further research on the elements that may undermine the validity of requests for assisted dying is warranted. More research on the reasons why requests for assisted dying are refused is also desirable. (shrink)

When an individual facing intractable pain is given an estimate of a few months to live, does hastening death become a viable and legitimate alternative for willing patients? Has the time come for physicians to do away with the traditional notion of healthcare as maintaining or improving physical and mental health, and instead accept their own limitations by facilitating death when requested? The Universities of Oxford and Cambridge held the 2013 Varsity Medical Debate on the motion “This House Would Legalise (...) Assisted Dying”. This article summarises the key arguments developed over the course of the debate. We will explore how assisted dying can affect both the patient and doctor; the nature of consent and limits of autonomy; the effects on society; the viability of a proposed model; and, perhaps most importantly, the potential need for the practice within our current medico-legal framework. (shrink)

The practice of medically assisted dying has long been contentious, and the question of what to call it has become increasingly contentious as well. Particularly among U.S. proponents of legalizing the practice, there has been a growing push away from calling it “physician‐assisted suicide,” with assertions that medically assisted dying is fundamentally different from suicide. Digging deeper into this claim about difference leads to an examination of the difference between two kinds of suffering—suffering from physical (...) conditions and suffering from psychological conditions—and therefore leads also toward an examination of whether requests for medical assistance in dying by those suffering from psychological conditions and those suffering from physical conditions should be painted with the same brush. In this article, I aim both to illuminate some of the considerations that ought to be included in discussions related to medically assisted dying and to shed light on what the indirect effects of such discussions can be. I consider some of the reasons commonly given for holding that suicide and medically assisted dying differ fundamentally and then whether the conclusion that medically assisted dying should not be called “suicide” follows from the premises. I ask what else might justify the conclusion that the two acts ought to be called by different names, and I examine possible justifications for accepting this premise, as well as what justifications might exist for emphasizing how the acts are alike. Finally, I argue that we should be cautious before concluding that medically assisted dying should not be called “suicide.” We need more evidence either that the two acts are fundamentally different or that emphasizing differences between them is not likely to do more harm than good. (shrink)

Abstract‘Assisted dying’ (an umbrella term for euthanasia and/or assisted suicide) is frequently defended as an act of autonomous self-determination in death but, given a choice, between 93.3% and 100% of patients are reluctant to self-administer (median 99.5%). If required to self-administer, fewer patients request assisted death and, of these, a sizable proportion do not self-administer but die of natural causes. This manifest avoidance runs counter to the concept of autonomous self-determination, even on the supposition that suicide (...) could truly be autonomous. The avoidance of self-administration does not show that self-administration, when it occurs, is necessarily autonomous. It suggests, rather, that there are other frames by which assisted dying is being understood. One such is desire for medical control, a desire shared by patients and doctors. Such a frame is not directed towards an exacting autonomy (self-directed action by the patient) but towards a comforting heteronomy (letting the doctor take control). (shrink)

Recently, several authors have argued that assisted dying may be ethically appropriate when requested by a person who suffers from serious depression unresponsive to treatment. We here present four arguments to the contrary. First, the arguments made by proponents of assisted dying rely on notions of “treatment-resistant depression” that are problematic. Second, an individual patient suffering from depression may not be justified in believing that chances of recovery are minimal. Third, the therapeutic significance of hope must (...) be acknowledged; when mental healthcare opens up the door to admitting hopelessness, there is a danger of a self-fulfilling prophecy. Finally, proponents of assisted dying in mental healthcare overlook the dangers posed to mental-health services by the institutionalization of assisted dying. (shrink)

Background Victoria was the first Australian state to legalize voluntary assisted dying (elsewhere known as physician-assisted suicide and euthanasia). Some institutions indicated they would not participate in voluntary assisted dying. The Victorian government issued policy approaches for institutions to consider Objective To describe and analyse publicly available policy documents articulating an institutional objection to voluntary assisted dying in Victoria. Methods Policies were identified using a range of strategies, and those disclosing and discussing the (...) nature of an institutional objection were thematically analysed using the framework method. Results The study identified fifteen policies from nine policymakers and developed four themes: (1) extent of refusal to participate in VAD, (2) justification for refusal to provide VAD, (3) responding to requests for VAD, and (4) appeals to state-sanctioned regulatory mechanisms. While institutional objections were stated clearly, there was very little practical detail in most documents to enable patients to effectively navigate objections in practice. Conclusion This study demonstrates that despite having clear governance pathways developed by centralized bodies (namely, the Victorian government and Catholic Health Australia), many institutions’ public-facing policies do not reflect this guidance. Since VAD is contentious, laws governing institutional objection could provide greater clarity and regulatory force than policies alone to better balance the interests of patients and non-participating institutions. (shrink)

The purpose of this text is to tell the story of the implementation of the _Act Respecting End-of-Life Care,_ referred to hereafter as _Law 2_ (Gouvernement du Québec, 2014) with an emphasis on the ambiguous role of ethics in the Interdisciplinary Support Groups (ISGs), created by Quebec's _Ministère de la santé et des services sociaux_ (MSSS). As established, ISGs provide “clinical, administrative and ethical support to health care professionals responding to a request for Medical aid in dying (MAiD)” (Gouvernement (...) du Québec, 2015). It is suggested that their composition includes the participation of a person with an expertise in ethics. These ISGs represent an important innovation for stakeholders involved in MAiD. To date, no scientific research has specifically addressed ISGs and little research has been conducted in other jurisdictions on the roles, operations and practices of MAiD support structures, especially the implication of ethics. Several ISGs have certainly developed promising practices that could benefit all stakeholders in the wider field of ethics and end of life. We will explore the development of ISGs in Quebec as a support structure for MAiD by highlighting the role that ethics has played (and should play) in these morally and humanly challenging situations. (shrink)

In several jurisdictions, irremediable suffering from a medical condition is a legal requirement for access to assisted dying. According to the expressivist objection, allowing assisted dying for a specific group of persons, such as those with irremediable medical conditions, expresses the judgment that their lives are not worth living. While the expressivist objection has often been used to argue that assisted dying should not be legalised, I show that there is an alternative solution available (...) to its proponents. An autonomy-based approach to assisted suicide regards the provision of assisted suicide (but not euthanasia) as justified when it is autonomously requested by a person, irrespective of whether this is in her best interests. Such an approach has been put forward by a recent judgment of the German Federal Constitutional Court, which understands assisted suicide as an expression of the person’s right to a self-determined death. It does not allow for beneficence-based restrictions regarding the person’s suffering or medical diagnosis and therefore avoids the expressivist objection. I argue that on an autonomy-based approach, assisted suicide should not be understood as a medical procedure but rather as the person’s autonomous action. (shrink)

In 20141 and 2016,2 respectively, Québec and Canada adopted legislation permitting medical assistance in dying (MAID). In this context, the question of whether persons with mental disorders should be able to access MAID has received considerable scrutiny.Over the last 5 years, I have been involved in the academic and policy debates about assisted dying for persons with mental disorders. Policymakers and clinicians alike demand that public policy be based on 'evidence' by which they tend to mean empirical, (...) usually quantitative, data. There is little acknowledgement that some questions are not empirical and that facts require interpretation.The debate about whether a request for assistance in dying by a person with a... Read More. (shrink)

Background Medical Assistance in Dying in Canada came into effect in 2016 with the passing of Bill C-14. As patient interest and requests for MAID continue to evolve in Canada, it is important to understand the attitudes of future providers and the factors that may influence their participation. Attitudes towards physician hastened death in general and the specific provision of MAID are unknown among Canadian residents. This study examined residents’ attitudes towards PHD and MAID, and identified factors that (...) may influence their decision to participate in PHD and provide MAID. Methods A cross-sectional survey was adapted from prior established surveys on MAID to reflect the Canadian setting. All Canadian family medicine programs were invited to participate. The survey was distributed between December 2016 and April 2017. Analysis of the results included descriptive statistics to characterize the survey participants and multivariable logistic regressions to identify factors that may influence residents’ attitudes towards PHD and MAID. Results Overall, 247 residents from 6 family medicine training programs in Canada participated. While residents were most willing to participate in treatment withdrawal, active participation in PHD and MAID by prescription of a lethal drug and lethal injection were less acceptable. Logistic regressions identified religion as a consistent and significant factor impacting residents’ willingness to participate in PHD and MAID. Residents who were not strictly practicing a religion were more likely to be willing to participate in PHD and MAID. Increased clinical exposure to death and dying crudely correlated with increased willingness to participate in PHD and MAID, but when examined in multivariable models, only a few activities had a statistically significant association. Other significant factors included the residents’ sex and location of training. Conclusions Residents are hesitant to provide MAID themselves, with religious faith being a major factor impacting their decision. (shrink)

ABSTRACT Objectives There is little research on moral uncertainties and distress of palliative and hospice care providers (PHCPs) working in jurisdictions anticipating legalising voluntary assisted dying (VAD). This study examines the perception and anticipated concerns of PHCPs in providing VAD in the State of Queensland, Australia prior to legalisation of the practice in 2021. The findings help inform strategies to facilitate training and support the health and well-being of healthcare workers involved in VAD. Design The study used a (...) qualitative approach to examine and analyse the perception and anticipated concerns of PHCPs regarding challenges of providing assisted dying in Queensland. Fourteen PHCPs were recruited using a purposive sampling strategy to obtain a broad representation of perspectives including work roles, geographical locations and workplace characteristics. Data were collected via one in-depth interview per participant. The transcripts were coded for patterns and themes using an inductive analysis approach following the tradition of Grounded Theory. Setting The study was conducted in hospital, hospice, community and residential aged care settings in Queensland, Australia. These included public and private facilities, secular and faith-based facilities, and regional/rural and urban facilities. Participants Interviews were conducted with fourteen PHCPs: 10 nurses and 4 physicians; 11 female and 3 male. The median number of years of palliative care practice was 17, ranging from 2 to 36 years. For inclusion, participants had to be practising palliative and hospice care providers. Results PHCPs are divided on whether VAD should be considered part of palliative care. Expectations of moral distress and uncertainty about practising VAD were identified in five areas: handling requests, assessing patient capacity, arranging patient transfers and logistical issues, managing unsuccessful attempts, and dealing with team conflicts and stigma. Conclusions The possibility of having to practise VAD causes moral distress and uncertainty for some PHCPs. Procedural clarity can address some uncertainties; moral and psychological distress, however, remains a source of tension that needs support to ensure ongoing care of both patients and PHCPs. The introduction of VAD post-legalisation may present an occasion for further moral education and development of PHCPs. (shrink)

The aim of this article is to present and critically investigate a type of argument against legalising assisted dying on request (ADR) for patients who are terminally ill and experiencing suffering. This type of argument has several variants. These—which we call ‘autonomy-based arguments’ against legalising ADR—invoke different specifications of the premise that we ought not to respect requests for assistance in dying made by terminally ill and suffering patients because the basic conditions of autonomy cannot be (...) met in scenarios where such requests are made. Specifically, it is argued either (1) that as a result of pain, anxiety or desperation, terminally ill patients are not competent decision makers or (2) that legalisation of ADR would lead to social pressure or in other ways change the patient's context of choice in ways that make such requests nonautonomous. We argue that these types of arguments are problematic in light both of empirical studies and the fact that we usually judge that it is morally right to respect the wishes and decisions of dying people even if they suffer. (shrink)

This study assessed the attitudes and needs of physicians and health professional staff at a tertiary care hospital in Canada regarding the introduction of physician assisted dying (PAD) during 2015–16. This research aimed to develop an understanding of the wishes, concerns and hopes of stakeholders related to handling requests for PAD; to determine what supports/structures/resources health care professionals (HCP) require in order to ensure high quality and compassionate care for patients requesting PAD, and a supportive environment for (...) all healthcare providers across the moral spectrum. This study constituted a mixed methods design with a qualitative descriptive approach for the study’s qualitative component. A total of 303 HCPs working in a tertiary care hospital completed an online survey and 64 HCPs working in hospital units with high mortality rates participated in 8 focus group discussions. Both focus group and survey data coalesced around several themes to support the implementation of PAD following the decriminalization of this practice: the importance of high quality care; honoring moral diversity; supporting values (such as autonomy, privacy, beneficence); and developing resources, including collaboration with palliative care, education, policies and a specialized team. This study provided the foundational evidence to support the development of the PAD program described in other papers in this collection, and can be a model for gathering evidence from stakeholders to inform the implementation of PAD in any healthcare organization. (shrink)

Background Since the enactment of the euthanasia law in the Netherlands, there has been a lively public debate on assisted dying that may influence the way patients talk about euthanasia and physician-assisted suicide with their physicians and the way physicians experience the practice of EAS. Aim To show what developments physicians see in practice and how they perceive the influence of the public debate on the practice of EAS. Methods We conducted a secondary analysis of in-depth interviews (...) with 28 Dutch physicians who had experience with a complex case of EAS. Respondents were recruited both by the network of physicians working for SCEN as well as via a national questionnaire, wherein participating physicians could indicate their willingness to be interviewed. Results Three themes came up in analysing the interviews. First, the interviewed physicians experienced a change in what patients would expect from them: from a role as an involved caregiver to being the mere performer of EAS. Second, interviewees said that requests for EAS based on non-medical reasons came up more frequently and wondered if EAS was the right solution for these requests. Last, respondents had the impression that the standards of EAS are shifting and that the boundaries of the EAS regulation were stretched. Conclusions The perceived developments could make physicians less willing to consider a request for EAS. Our results also raise questions about the role of physicians and of EAS in society. (shrink)

BackgroundDealing with end of life is challenging for patients and health professionals alike. The situation becomes even more challenging when a patient requests a legally permitted medical service that a health professional is unable to provide due to a conflict of conscience. Such a scenario arises when Victorian health professionals, with a conscientious objection (CO) to voluntary assisted dying (VAD), are presented with patients who request VAD or merely ask about VAD. The Voluntary Assisted Dying (...) Act 2017 (Vic) recognizes the inherent conflict of conscience that may arise for some health professionals when asked to provide VAD and responds by affording broad protection to conscientious objectors who wish to refuse to take part in the VAD process.MethodsSeventeen semi-structured qualitative interviews were conducted with Victorian health professionals with a self-identified CO to VAD in the lead-up to the implementation of VAD in Victoria. Interviews explored how participants anticipated they would manage their CO in practice. Interviews were transcribed verbatim and analyzed thematically.ResultsOur results reveal that the way in which health professionals claimed they would approach CO conversations is variable and was dependant on the strength of their opposition to VAD. We categorized conscientious objectors according to their approach as either dissuasive non-referrers, passive non-referrers, facilitators or negotiators. Our study also explores the perceived difficulties of exercising one’s CO as identified by our participants.ConclusionThe broad protection offered by the Voluntary Assisted Dying Act 2017 (Vic) encourages a range of behaviors from conscientious objectors, due to the minimal obligations imposed. In order to assist conscientious objectors, more policy, institutional guidance, and education needs to be available to conscientious objectors explicitly addressing how to effectively manage one’s CO. Such guidance is imperative to ensuring that their moral integrity is preserved and that they are exercising their CO appropriately. (shrink)

Jukka Varelius1 ,2 and others3 have advocated that medically assisted dying should be made available on request to competent individuals experiencing ‘existential suffering’. Unlike Cassell and Rich, Varelius believes that existential sufferers do not have to be terminally ill before being helped to die. He does not regard ‘existential suffering’ on its own as sufficient to justify voluntary medically assisted dying, but believes it to be one of a set of jointly sufficient conditions . In ‘Medical (...) expertise, existential suffering and ending life’, however, he aims only to show that if physicians have the expertise required to assess when suffering consequent upon illness or injury is unbearable, that they can equally have that expertise when confronted with ‘existential suffering’. In what follows, I will neither be endeavouring to refute his more general claim , nor his argument in the present paper. Rather, I will offer two reasons for thinking that even if it is sound it is of limited practical significance.First, Varelius outlines his position without reference to relevant political considerations. He distances himself from what he terms the ‘conventional view’, namely, that voluntary medically …. (shrink)

In their analysis of the eligibility criteria for assisted dying in Canada, Downie and Schuklenk put forward a strong argument for the ethical defensibility of including mental illnesses and disabilities as underlying conditions driving a person’s request for assisted dying.1 In this commentary, we add a view on these debates from our home state of Victoria, Australia, where voluntary assisted dying has been legal since June 2019. We highlight the more conservative approach to eligibility (...) in our setting compared with Canada, and argue for debates about eligibility criteria to be conceptualised as part of a broader discussion about access to assisted dying that includes clinicians’ roles and perspectives. In our view, clinicians’ perspectives may have a significant impact on individuals’ ability to access assisted dying, regardless of legislative or other changes made to any system. ‘Voluntary assisted dying’ is the terminology used in our context, rather than Medical Assistance in Dying, so we will use that term when referring to the Victorian system. There are several key differences between the Canadian and Victorian approaches that are important in relation to the debates addressed by Downie and Schuklenk. First, the emphasis in Victoria is on patient self-administration of the VAD …. (shrink)

BackgroundNo laws or official guidelines govern voluntary assisted dying (VAD) in Japan. A legislative bill on the termination of life-sustaining measures has yet to be sent to deliberations for legislation, due to strong opposition that has prevented it from being submitted to the Diet. However, Japan has recently witnessed several cases involving VAD.Main textAgainst this backdrop, we argue that Japan should begin discussion on VAD legislation, referring to the Voluntary Assisted Dying Act 2017 (VADA2017), which was (...) established in 2017 in Victoria, Australia. VADA2017 puts in place a wide range of stringent safeguards and is considered worldwide to be the safest and most conservative policy on a physician offering assisted dying based on the patient’s premeditated request. We consider what opposing opinions from society would arise in response to the VADA2017. Among these will include arguments against VAD itself, those against the validation of this act, and opinions that oppose even the initiation of the dialogue on VAD.ConclusionsWe conclude that to protect the right to life among those placed in vulnerable positions and, at the same time, to respect decision-making of those who wish for immediate death due to unbearable suffering, the dialogue must immediately begin with that on introducing a policy more conservative than that of the VADA2017, which solidly considers arguments against VAD. (shrink)

Traditional medical ethics and law draw a sharp distinction between allowing a patient to die and helping her die. Withholding or withdrawing life sustaining treatment, such as by abating technological nutrition, hydration or respiration, will cause death as surely as a lethal injection. The former, however, is a constitutional right for a competent or once-competent patient, while the latter poses a risk of serious criminal or civil liability for the physician, even if the patient requests it.

Introduction: The Dutch Euthanasia Act states that euthanasia is not punishable if the attending physician acts in accordance with the statutory due care criteria. These criteria hold that: there should be a voluntary and well-considered request, the patient’s suffering should be unbearable and hopeless, the patient should be informed about their situation, there are no reasonable alternatives, an independent physician should be consulted, and the method should be medically and technically appropriate. This study investigates whether physicians experience problems with these (...) criteria in medical practice.Methods: In 2006, questionnaires were sent to a random, stratified sample of 2100 Dutch physicians . Physicians were asked about problems in their decision-making related to requests for euthanasia or assisted suicide after enforcement of the 2002 Euthanasia Act.Results: Of all physicians who had received a request for euthanasia or assisted suicide , 25% had experienced problems in the decision-making with regard to at least one of the criteria of due care. Physicians who had experienced problems mostly indicated to have had problems related to evaluating whether or not the patient’s suffering was unbearable and hopeless and whether or not the patient’s request was voluntary or well considered .Discussion: Physicians in The Netherlands most frequently reported problems related to aspects in which they have to evaluate the patient’s subjective perspective. However, it can be questioned whether placing emphasis on these subjective aspects is an adequate fulfilment of the duties imposed on physicians, as laid down in the Dutch Euthanasia Act. (shrink)

Background One of the objectives of medicine is to relieve patients' suffering. As a consequence, it is important to understand patients' perspectives of suffering and their ability to cope. However, there is poor insight into what determines their suffering and their ability to bear it. Purpose To explore the constituent elements of suffering of patients who explicitly request euthanasia or physician-assisted suicide (EAS) and to better understand unbearable suffering from the patients' perspective. Patients and methods A qualitative study using (...) in-depth face-to-face interviews was conducted with 31 patients who had requested EAS. The grounded theory approach was used to analyse the data. Results Medical, psycho-emotional, socio-environmental and existential themes contributed to suffering. Especially fatigue, pain, decline, negative feelings, loss of self, fear of future suffering, dependency, loss of autonomy, being worn out, being a burden, loneliness, loss of all that makes life worth living, hopelessness, pointlessness and being tired of living were constituent elements of unbearable suffering. Only patients with a psychiatric (co)diagnosis suffered unbearably all the time. Conclusions Unbearable suffering is the outcome of an intensive process that originates in the symptoms of illness and/or ageing. According to patients, hopelessness is an essential element of unbearable suffering. Medical and social elements may cause suffering, but especially when accompanied by psycho-emotional and existential problems suffering will become ‘unbearable’. Personality characteristics and biographical aspects greatly influence the burden of suffering. Unbearable suffering can only be understood in the continuum of the patients' perspectives of the past, the present and expectations of the future. (shrink)

BackgroundFollowing several landmark rulings and increasing public support for physician-assisted death, in 2016, Canada became one of a handful of countries legalising medical assistance in dying (MAiD) with Bill C-14. However, the revised Bill C-7 proposes the specific exclusion of MAiD where a mental disorder is the sole underlying medical condition (MAiD MD-SUMC).AimThis review explores how some persons with serious and persistent mental illness (SPMI) could meet sensible and just criteria for MAiD under the Canadian legislative framework.MethodsWe review (...) the proposed Bill C-7 criteria (capacity, voluntariness, irremediability and suffering) as well as the nuances involved in separating a well-reasoned request for assisted suicide from what might be solely a manifestation of a SPMI.FindingsIn this paper, we argue against the absolute exclusion of patients with SPMIs from accessing MAiD. Instead, we propose that in some circumstances, MAiD MD-SUMC may be justifiable while remaining the last resort. Conducting MAiD eligibility assessments removes the need to introduce diagnosis-specific language into MAiD legislation. Competent psychiatric patients who request MAiD should not be treated any differently from other eligible candidates. Many individuals with psychiatric disorders will be incapable of consenting to MAiD. The only ethical option is to assess eligibility for MAiD on an individual basis and include as legitimate candidates those who suffer solely from psychiatric illness who have the decisional capacity to consent to MAiD. (shrink)

The contentious, topical debate about whether faith-based health care organizations should be granted accommodation on the basis of institutional conscientious objection to medical assistance is dying is addressed through a comparative analysis of arguments on both sides of the issue that references such relevant considerations as: claimed ‘moral-authority’, competing rights-based claims, obligations arising from patient welfare principles, formal justice, dissimilarity in consequences, and two illustrative arguments from analogy. The analysis leads to the conclusion that nonconditional accommodation on the basis (...) of institutional conscientious objection to MAiD is not ethically acceptable in Canada. A compromise mechanism, consisting of a suggested set of pragmatic conditions, is proposed that could effectively balance the competing moral responsibilities that arise from this conclusion and a core assumption of the paper, i.e., that some dominant faith-based health institutions can legitimately request, and expect, that provincial/territorial governments pay them a measure of respect in their operational, health-care-delivery decision making because of these institutions’ long history of providing high quality, health care in Canada. It is further suggested that provincial/territorial governments only allow large, publicly funded, faith-based health care organizations to enact a conditional version of accommodation on the basis of institutional conscientious objection to MAiD in circumstances where the organization has entered into a formal agreement with the relevant health department to meet the proposed, compromise conditions. (shrink)

In Canada, there is interest in expanding medical assistance in dying (MAID) to include advance requests (AR) for people living with dementia (PLWD). However, operationalizing the intolerable suffering criterion for MAID in ARs for PLWD is complicated by the Canadian legal context—in which MAID is understood as a medical intervention and suffering is conceptualized as subjective—and the degenerative nature of dementia. ARs that express a wish to receive MAID when the PLWD develops pre-specified impairments are problematic because people (...) are unlikely to accurately predict the conditions that will cause intolerable suffering. ARs that express a wish to receive MAID when the PLWD exhibits pre-specified behaviors that likely represent suffering are problematic because they are inconsistent with the subjective conceptualization of suffering. Further research is required to determine whether adopting an objective conceptualization of suffering is justified in these cases and, if so, how to reliably identify intolerable suffering in PLWD. (shrink)

This article explores the ethical challenges of providing Medical Assistance in Dying (MAID) in a paediatric setting. More specifically, we focus on the theoretical questions that came to light when we were asked to develop a policy for responding to MAID requests at our tertiary paediatric institution. We illuminate a central point of conceptual confusion about the nature of MAID that emerges at the level of practice, and explore the various entailments for clinicians and patients that would flow (...) from different understandings. Finally, we consider the ethical challenges of building policy on what is still an extremely controversial social practice. While MAID is currently available to capable patients in Canada who are 18 years or older—a small but important subsection of the population our hospital serves—we write our policy with an eye to the near future when capable young people may gain access to MAID. We propose that an opportunity exists for MAID-providing institutions to reduce social stigma surrounding this practice, but not without potentially serious consequences for practitioners and institutions themselves. Thus, this paper is intended as a road map through the still-emerging legal and ethical landscape of paediatric MAID. We offer a view of the roads taken and considered along the way, and our justifications for travelling the paths we chose. By providing a record of our in-progress thinking, we hope to stimulate wider discussion about the issues and questions encountered in this work. (shrink)

Even in the Netherlands, where the practice of physician-assisted death (PAD) has been legalized for over 20 years, there is no such thing as a ‘right to die’. Especially patients with extraordinary requests, such as a wish for PAD based on psychiatric suffering, advanced dementia, or (a limited number of) multiple geriatric syndromes, encounter barriers in access to PAD. In this paper, we discuss whether these barriers can be justified in the context of the Dutch situation where PAD (...) is legally permitted for those who suffer unbearably and hopelessly as a result of medical conditions. Furthermore, we explore whether there are options to address some of the barriers or their consequences, both within the Dutch legal framework or by adjusting the legal framework, and whether these options are feasible. We conclude that although there are insufficient arguments to overrule the doctor’s freedom of conscience in the Netherlands, there are ways to address some of the barriers, mainly by offering support to doctors that would be willing to support a request. Moreover, we believe it is morally required to reduce or mitigate where possible the negative consequences of the barriers for patients, such as the long waiting time for those who suffer from psychiatric disorders, because it is unlikely the adjustments suggested to the system will ensure reasonable access for these patient groups. (shrink)

BackgroundThe terminal illness of late-stage Alzheimer’s and related dementias is progressively cruel, burdensome, and can last years if caregivers assist oral feeding and hydrating. Options to avoid prolonged dying are limited since advanced dementia patients cannot qualify for Medical Aid in Dying. Physicians and judges can insist on clear and convincing evidence that the patient wants to die—which many advance directives cannot provide. Proxies/agents’ substituted judgment may not be concordant with patients’ requests. While advance directives can be (...) patients’ last resort to attain a peaceful and timely dying consistent with their lifelong values, success depends on their being effective and acceptable. A single flaw can provide opponents justification to refuse the directive’s requests to cease assisted feeding.AimThis article considers 24 common advance directive flaws in four categories. Process flaws focus on how patients express their end-of-life wishes. Content flaws reflect drafters’ selection of conditions and interventions, and how they are described. Inherent flaws can make advance directives unacceptable to authorities concerned about premature dying. Strategies are needed to compel physicians to write needed orders and to prevent third parties from sabotaging these orders after they are implemented. The article includes excerpts from “dementia-specific” directives or supplements that exemplify each flaw—mostly from the US and Europe. No directive critiqued here included an effective strategy to resolve this long-debated bioethical conflict: the past directive requests “Cease assisted feeding” but the incapacitated patient apparently expresses the desire to “Continue assisted feeding.” Some opponents to the controversial request, cease assisted feeding, use this conflict as a conceptual wedge to practice hard paternalism. This article proposes a protocol to prevent this conflict from emerging. These strategies may prevent authorities from requiring patients to fulfill authorities’ additional clinical criteria as a prerequisite to honor the requests in patients directives.ConclusionThis critique of flaws may serve as a guide to drafting and to selecting effective and acceptable advance directives for dementia. It also poses several bioethical and clinical questions to those in authority: Does your paternalistic refusal to honor patients’ wishes respect their self-determination? Protect vulnerable patients from harm? Force patients to endure prolonged suffering? Violate the principles of bioethics? Violate the very foundation of patient-centered care? (shrink)

Following a Canadian Supreme Court ruling invalidating an absolute prohibition on physician assisted dying, two reports and several commentators have recommended that the Canadian criminal law allow medical assistance in dying (MAID) for persons with a diagnosis of mental disorder. A key element in this process is that the person requesting MAID be deemed to have the ‘mental capacity’ or ‘mental competence’ to consent to that option. In this context, mental capacity and mental competence refer to ‘decision-making (...) capacity’, which is a distinct area of clinical study and research in the theory of informed consent. The purpose of this discussion is to bring several controversial but insufficiently acknowledged problems associated with decision-making capacity to the forefront of the proposed extension of MAID to persons diagnosed with mental disorders. Open-ended access to MAID by persons who suffer from mental health conditions already exists in Belgium and the Netherlands, where the issues raised here are equally relevant. In this paper, we highlight the serious limitations of relying on capacity assessments to allow access to MAID/Euthanasia. (shrink)

Background: After over 4 years since medical assistance in dying legalization in Canada, there is still much uncertainty about how this ruling has affected Canadian society. Objective: To describe the positive aspects of medical assistance in dying legalization from the perspectives of hospice palliative care providers engaging in medical assistance in dying. Design: In this qualitative descriptive study, we conducted an inductive thematic analysis of semi-structured interviews with hospice palliative care providers. Participants and setting: Multi-disciplinary hospice palliative (...) care providers in acute, community, residential, and hospice care in Vancouver and Toronto, Canada, who have engaged in end-of-life care planning with patients who have inquired about and/or requested medical assistance in dying. Ethical considerations: The research proposal was approved by University of British Columbia Research Ethics Board in Vancouver and University Health Network in Toronto. Participants were informed regarding the research goals, signed a written consent, and were assigned pseudonyms. Results: The 48 participants included hospice palliative care physicians, nurses, social workers, and allied health providers. The average interview length was 50 min. Positive aspects of medical assistance in dying legalization were identified at the individual level: a new end-of-life option, patients’ last chance to express control over their lives, patient and family comfort and relief, and a unique learning experience for hospice palliative care providers; the team level: supportive collegial relationships, broadened discussions about end-of-life and palliative care, and team debriefs provide opportunities for education and support; and the institutional level: improved processes to facilitate the implementation logistics. Conclusion: While being involved in the medical assistance in dying process is complex and challenging, this study sheds light on the positive aspects of medical assistance in dying legalization from the hospice palliative care provider’s perspectives. Medical Assistance in Dying legalization has resulted in improved end-of-life conversations between hospice palliative care providers, patients, and their families. Improved communication leads to a better understanding of patients’ end-of-life care plans and bridges some of the existing gaps between hospice palliative care and medical assistance in dying. (shrink)

This paper focuses on the _ethics of how_ to approach the introduction of MAiD as an organizational ethics challenge, a focus that diverges from the traditional focus in healthcare ethics on the _ethics of why_ MAiD is right or wrong. It describes a method co-designed and implemented by ethics and medical leadership at a tertiary hospital to develop a values-based, grassroots response to the decriminalization of assisted dying in Canada. This organizational ethics engagement method embodied core tenants that (...) drew inspiration from a variety of sources, including poetic ones. These tenants are: make the problem bigger; focus on values; cultivate open moral spaces; and trust emergence. The paper describes how these tenants were put into practice in order to create a rigorous and sustainable MAiD program that delivers high-quality care to patients and families while honoring the moral diversity of the hospital workforce. One of the goals in sharing this method is to provide a roadmap for healthcare organizations in Canada and other jurisdictions around the world that are facing the challenge of responding to patient requests for MAiD following the decriminalization of this care option. (shrink)

Following a Canadian Supreme Court ruling invalidating an absolute prohibition on physician assisted dying, two reports and several commentators have recommended that the Canadian criminal law allow medical assistance in dying (MAID) for persons with a diagnosis of mental disorder. A key element in this process is that the person requesting MAID be deemed to have the ‘mental capacity’ or ‘mental competence’ to consent to that option. In this context, mental capacity and mental competence refer to ‘decision-making (...) capacity’, which is a distinct area of clinical study and research in the theory of informed consent. The purpose of this discussion is to bring several controversial but insufficiently acknowledged problems associated with decision-making capacity to the forefront of the proposed extension of MAID to persons diagnosed with mental disorders. Open-ended access to MAID by persons who suffer from mental health conditions already exists in Belgium and the Netherlands, where the issues raised here are equally relevant. In this paper, we highlight the serious limitations of relying on capacity assessments to allow access to MAID/Euthanasia. (shrink)

Patients in Quebec can legally obtain medical assistance in dying (MAID) if they are able to give informed consent, have a serious and incurable illness, are at the end of their lives and are in a situation of unbearable suffering. Since the Supreme Court of Canada’s 2015 Carter decision, access to MAID, under certain conditions, has become a constitutional right. Quebec physicians are now likely to receive requests for MAID from their patients. The Quebec and Canadian laws recognize (...) a physician’s right to conscientious objection, but this right is contested both in the medical ethics literature and in the public sphere. This paper presents the results of a qualitative study conducted with twenty Quebec physicians who did not integrate MAID into their medical practice, either because they were opposed to or deeply ambivalent about MAID. The interviews aimed to explore the reasons – religious and secular – for opposition to or ambivalence towards MAID. The secular reasons given by participants were grouped into four main categories: 1) the ends of medicine and professional identity, 2) the philosophy of palliative medicine and resource allocation in palliative care, 3) benevolent paternalism, the “good death”, and the interests of future selves, 4) the risk of a slippery slope and the protection of vulnerable people. (shrink)

Following an initial study of the needs of healthcare providers (HCP) regarding the introduction of Medical Assistance in Dying (MAiD), and the subsequent development of an assisted dying program, this study sought to determine the efficacy and impact of MAiD services following the first two years of implementation. The first of three aims of this research was to understand if the needs, concerns and hopes of stakeholders related to patient requests for MAiD were addressed appropriately. Assessing (...) how HCPs and families perceived the quality of MAiD services, and determining if the program successfully accommodated the diverse needs and perspectives of HCPs, rounded out this quality evaluation. This research implemented a mixed-methods design incorporative of an online survey with Likert scale and open-ended questions, as well as focus groups and interviews with staff and physicians, and interviews with MAiD-involved family members. There were 356 online surveys, as well as 39 participants in six focus groups with HCP, as well as fourteen interviews with MAiD-involved family members. Participants indicated that high-quality MAiD care could only be provided with enabling resources such as policies and guidelines to ensure safe, evidence-based, standardized care, as well as a specialized, trained MAiD team. Both focus group and survey data from HCPs suggest the infrastructure developed by the hospital was effective in delivering high-quality MAiD care that supports the diverse needs of various stakeholders. This study may serve as a model for evaluating the impact and quality of services when novel and ethically-contentious clinical practices are introduced to healthcare organizations. (shrink)

In the Netherlands, in 1995 approximately 9700 people explicitly requested euthanasia or assisted suicide, and EAS was performed approximately 3600 times. The most important reasons for not performing EAS when requested by a patient were that the patient died before EAS was performed, or that the physician refused the request.

According to the “discrimination argument,” it would be discriminatory and hence impermissible to categorically exclude people with mental illness (PMI) from access to assisted suicide (AS) if AS is accessible to people with somatic illnesses. In objection to this, it could be argued that excluding PMI is not discriminatory, but rather based on their inability to meet certain eligibility criteria for AS. Which criteria are deemed necessary depends on the approach taken to justifying AS. In this article, we describe (...) two distinct ethical approaches to justifying AS and the eligibility criteria they entail and examine whether PMI can fulfill these criteria. A widespread “joint” approach based on beneficence and autonomy assumes that AS is justified when it alleviates the severe and irremediable suffering of a person who autonomously requests AS. An alternative, exclusively autonomy‐based approach assumes that providing AS is justified when a person's request is autonomous, regardless of whether AS is in her best interests. The latter approach underlies an important judgment of the German Federal Constitutional Court from 2020. We argue that PMI can in principle fulfill both beneficence‐ and autonomy‐based eligibility criteria for AS, and that a blanket exclusion of all PMI from AS is thus discriminatory on either approach. However, depending on which approach is taken, there are differences regarding the subgroups of PMI that would be eligible for AS. Whether the exclusion of specific PMI is discriminatory therefore depends on how we understand and justify AS. (shrink)

In this article I intend to describe an issue of the Dutch euthanasia practice that is not common knowledge. After some general introductory descriptions, by way of formulating a frame of reference, I shall describe the effects of this practice on patients, physicians and families, followed by a more philosophical reflection on the significance of these effects for the assessment of the authenticity of a request and the nature of unbearable suffering, two key concepts in the procedure towards euthanasia or (...) physician-assisted suicide. This article does not focus on the arguments for or against euthanasia and the ethical justification of physician-assisted dying. These arguments have been described extensively in Kimsma and Van Leeuwen (Asking to die. Inside the Dutch debate about euthanasia, Kluwer Academic Publishers, Dordrecht, 1998). (shrink)

Medical assistance in dying was legalized by the Supreme Court of Canada in June 2016 and became a legal, viable end of life care option for Canadians with irremediable illness and suffering. Much attention has been paid to the balance between physicians’ willingness to provide MAiD and patients’ legal right to request medically assisted death in certain circumstances. In contrast, very little attention has been paid to the challenge of making MAiD accessible to vulnerable populations. The purpose of (...) this paper was to examine the extant literature and resources that are available on the provision of MAiD in Canada. We found that the provision of EOLC in Canada offers insufficient access to palliative and EOLC options for Canadians and that vulnerable Canadians experience disproportional barriers to accessing these already limited resources. Consequently, we argue that palliative care, hospice care and MAiD must be considered a spectrum of EOLC that is inclusive and accessible to all Canadians. We conclude by imploring Canadian healthcare professionals, policy makers and legislators to consider MAiD as a viable EOLC option for all Canadians. (shrink)

In their summary and critique, Gamble, Gamble, and Pruski mischaracterise both the central arguments and the primary objectives of our original paper. Our paper does not provide an ethical justification for paediatric Medical Assistance in Dying by comparing it with other end of life care options. In fact, it does not offer arguments about the permissibility of MAID for capable young people at all. Instead, our paper focuses on the ethical questions that emerged as we worked to develop a (...) policy for responding to MAID requests at our tertiary paediatric institution. Following the Supreme Court of Canada’s recent decriminalisation of MAID, our hospital needed to answer immediate on-the-ground questions such as: ‘What are we going to do if an 18-year-old patient in our care requested MAID today, as is now their legal right? How should we protect their privacy? What is the best way to ensure patients are informed when making these decisions?’ On these important questions, Gamble, Gamble, and Pruskiare silent. (shrink)

BackgroundMedical assistance in dying (MAID) has been legal in Québec since December 2015 and in the rest of Canada since July 2016. Since then, more than 60 people have donated their organs after MAID. Such donations raise ethical issues about respect of patients’ autonomy, potential pressure to choose MAID, the information given to potential donors, the acceptability of directed donations in such a context and the possibility of death by donation. The objective of this study was to explore Québec (...) professionals’ perspectives on the ethical issues related to organ donation after MAID.MethodsWe conducted semi-directed interviews with 21 health care professionals involved in organ donation such as intensivists and intensive care nurses, operating room nurses, organ donation nurses and coordinators.ResultsThe participants were all favourable to organ donation after MAID in order to respect patients’ autonomy. They also favoured informing all potential donors of the possibility of donating organs. They highlighted the importance of assessing donors’ reasons for requesting MAID during the assessment. They were divided on directed donation, living donation before MAID and death by donation.ConclusionOrgan donation after MAID was widely accepted among the participants, based on the principle of respect for the donor’s autonomy. The findings of this study only provide the perspectives of Québec health care professionals involved in organ donation. Future studies are needed to gather other stakeholders’ perspectives on this issue as well as patients’ and families’ experiences of organ donation after MAID. (shrink)

Background Bioethics and law distinguish between the practices of "physician-assisted death" and "allowing the patient to die." Discussion Advances in biotechnology have allowed medical devices to be used as destination therapy that are designed for the permanent support of cardiac function and/or respiration after irreversible loss of these spontaneous vital functions. For permanent support of cardiac function, single ventricle or biventricular mechanical assist devices and total artificial hearts are implanted in the body. Mechanical ventilators extrinsic to the body are (...) used for permanent support of respiration. Clinical studies have shown that destination therapy with ventricular assist devices improves patient survival compared to medical management, but at the cost of a substantial alteration in end-of-life trajectories. The moral and legal assessment of the appropriateness and permissibility of complying with a patient's request to electively discontinue destination therapy in a life-terminating act in non-futile situations has generated controversy. Some argue that complying with this request is ethically justified because patients have the right to request withdrawal of unwanted treatment and be allowed to die of preexisting disease. Other commentators reject the argument that acceding to an elective request for death by discontinuing destination therapy is 'allowing a patient to die' because of serious flaws in interpreting the intention, causation, and moral responsibility of the ensuing death. Summary Destination therapy with cardiac and/or ventilatory medical devices replaces native physiological functions and successfully treats a preexisting disease. We posit that discontinuing cardiac and/or ventilatory support at the request of a patient or surrogate can be viewed as allowing the patient to die if--and only if--concurrent lethal pathophysiological conditions are present that are unrelated to those functions already supported by medical devices in destination therapy. In all other cases, compliance with a patient's request constitutes physician-assisted death because of the pathophysiology induced by the turning off of these medical devices, as well as the intention, causation, and moral responsibility of the ensuing death. The distinction between allowing the patient to die and physician-assisted death is pivotal to the moral and legal status of elective requests for death by discontinuing destination cardiac and/or ventilatory medical devices in patients who are not imminently dying. This distinction also represents essential information that must be disclosed to patients and surrogates in advance of consent to this type of therapy. (shrink)

Canada has followed the pattern of Benelux nations by legislating sufferingSuffering as the pivotal eligibilityEligibilitycriterionCriterion for euthanasiaEuthanasia/assisted death without requiring terminal prognosis as is needed in most permissive jurisdictions. This chapter will explore the relationship between sufferingSuffering and Medical Assistance in Dying (MAID) and the ways in which sufferingSuffering is understood in the Supreme Court of Canada, the federal Criminal Code legislation and by health care assessors. Based on this analysis, we will argue that the resulting sufferingSufferingeligibilityEligibilitycriterionCriterion leaves (...) the law open to unintended forms of interpretation, thus instituting perhaps the most unbounded and risk-prone form of assisted death in the world. A review of the literature on sufferingSuffering, the wish to dieWish to die, and reasons for MAIDReasons for MAID requests found sufferingSuffering of severe illness to be frequently associated with unstable mental health, social, and existentialExistential variables that are often amenable to therapy or remediation. While sufferingSuffering remains a powerful motivating force to seek opportunities to relieve distress, its use as an eligibilityEligibilitycriterionCriterion for MAID has significant ambiguity in its’ characterization of ‘enduring’ and ‘irremediable’ and thus fails to protect against abuse for the vulnerable. (shrink)

Background In June 2016, the Parliament of Canada passed federal legislation allowing eligible adults to request Medical Assistance in Dying (MAID). Since its implementation, there likely exists a degree of hesitancy among some healthcare providers due to the law being inconsistent with personal beliefs and values. It is imperative to explore how nurses in Quebec experience the shift from accompanying palliative clients through “a natural death” to participating in “a premeditated death.” Research question/aim/objectives This study aims to explore how (...) Quebec nurses personally and professionally face the new practice of MAID and their role evolution. Research design A grounded theory design was used. Participants and research context We recruited 37 nurses who participated in or coordinated at least one MAID. Semi-structured interviews and focus groups were conducted and audiotaped. Data collection and analysis followed Strauss and Corbin steps. Ethical considerations Ethics approval was received from the investigator’s affiliated University. Participants were informed regarding the research goal, signed a written consent, and were assigned pseudonyms. Findings/results Results show that nurses experienced the wide range of paradoxe during MAID centering around the following eight elements: 1) confrontation abouth death, 2) choice, 3) time of death, 4) emotional load, 5) new Bill, 6) relationship with the person, 7) communication skills, and 8) healthcare setting. The shifting of views and values in this new role is presented by the contradiction of opposites. Conclusions A better understanding of the paradox experienced by nurses involved with MAID paves the way for the development of interventions. (shrink)