Background: In Quebec, medical aid in dying is legal under certain conditions. Access is currently restricted to patients who are able to consent at the time of the act, which excludes most people with dementia at an advanced stage. However, recent legislative and political developments have opened the door to an extension of the legislation that could give them access to MAiD. Our study aimed to explore the attitudes of people with early-stage dementia toward MAiD should it become accessible to (...) them. Methods: We used a qualitative descriptive design consisting of eight face-to-face semi-structured interviews with persons living with early-stage Alzheimer’s disease, followed by a thematic analysis of the contents of the interviews. Results and Interpretations: Analysis revealed three main themes: 1) favourable to MAiD; 2) avoiding advanced dementia; and 3) disposition to request MAiD. Most participants anticipated dementia to be a painful experience. The main reasons for supporting MAiD were to avoid cognitive loss, dependence on others for their basic needs, and suffering for both themselves and their loved ones. Every participant said that they would ask for MAiD at some point should it become available to incompetent patients and most wished that it would be legal to access it through a request written before losing capacity. Conclusion: The reasons for which persons with Alzheimer’s disease want MAiD are related to the particular trajectory of the disease. Any policy to extend MAiD to incompetent patients should take their perspective into account. (shrink)

On 11 September 2019, the verdict was read in the first prosecution of a doctor for euthanasia since the Termination of Life on Request and Assisted Suicide (Review Procedures) Act of 2002 was installed in the Netherlands. The case concerned euthanasia on the basis of an advance euthanasia directive (AED) for a patient with severe dementia. In this paper we describe the review process for euthanasia cases in the Netherlands. Then we describe the case in detail, the judgement of the (...) Regional Review Committees for Termination of Life on Request and Euthanasia (RTE) and the judgement of the medical disciplinary court. Both the review committees and the disciplinary court came to the conclusion there were concerns with this case, which mainly hinged on the wording of the AED. They also addressed the lack of communication with the patient, the absence of oral confirmation of the wish to die and the fact that the euthanasia was performed without the patient being aware of this. However, the doctor was acquitted by the criminal court as the court found she had in fact met all due care criteria laid down in the act. We then describe what this judgement means for euthanasia in the Netherlands. It clarifies the power and reach of AEDs, it allows taking conversations with physicians and the testimony of the family into account when interpreting the AED. However, as a practical consequence the prosecution of this physician has led to fear among doctors about prosecution after euthanasia. (shrink)

We are grateful to Jongsma et al 1 for their interest in our article analysing the case of ‘Mrs A’, a Dutch woman with Alzheimer’s disease who received euthanasia based on her advance euthanasia directive.2 Their commentary criticises two elements of our analysis. First, the authors believe our reasons for doubting that Mrs A had the capacity to write and revise an AED rely on ‘partial’ empirical data and rest on normative errors. Second, they use two of our statements to (...) suggest we must endorse some implausible claims, for example, that ‘… in all situations and for all people, current well-being should always take precedence over all other values’. Jongsma et al assert: ‘Miller et al argue that people with dementia are impaired to make decisions.’ This casts our probabilistic claim about Mrs A’s capacity as an absolute claim about persons with dementia in general. It also implies we are using an outdated diagnosis-based view of capacity. The accusation then becomes explicit : > … several empirical studies have shown that patients with dementia are able to actively participate in qualitative studies and can respond to open questions in a meaningful way,[2-8] as well that they are able to complete an advance directive in the early phases of dementia.[9, 10] One can therefore not simply conclude on the basis of the diagnosis of dementia …. (shrink)

The authors of the paper ‘Advance euthanasia directives: a controversial case and its ethical implications’ articulate concerns and reasons with regard to the conduct of euthanasia in persons with dementia based on advance directives. While we agree on the conclusion that there needs to be more attention for such directives in the preparation phase, we disagree with the reasons provided by the authors to support their conclusions. We will outline two concerns with their reasoning by drawing on empirical research and (...) by providing reasons that contradict their assumptions about competence of people with dementia and the importance of happiness in reasoning about advance directives of people with dementia. We will draw attention to the important normative questions that have been overstepped in their paper, and we will outline why further research is required. (shrink)

BackgroundWith the enactment of Bill C-7 in Canada in March 2021, people who are eligible for medical assistance in dying (MAiD), whose death is reasonably foreseeable and are at risk of losing decision-making capacity, may enter into a written agreement with their healthcare provider to waive the final consent requirement at the time of provision. This study explored healthcare providers’ perspectives on honouring eligible patients’ request for MAiD in the absence of a contemporaneous consent following their loss of decision-making capacity. (...) MethodA critical qualitative methodology, using a feminist ethics theoretical lens with its focus on power and relationality, was used to examine how socio-political and environmental contexts influenced healthcare providers' moral agency and perspectives. Semi-structured interviews were conducted with 30 healthcare providers (13 physicians, six nurse practitioners, nine nurses and two social workers) from across Canada who provide MAiD-related care.ResultsThemes identified include; (1) balancing personal values and professional responsibilities, (2) anticipating strengths and limitations of the proposed waiver of final consent amendment, (3) experiencing ethical influences on decisions to enter into written agreements with eligible patients, (4) recognizing barriers to the enactment of MAiD in the absence of a contemporaneous consent and (5) navigating the potential for increased risks and burden.DiscussionTo our knowledge, this is the first study in Canada to explore healthcare providers’ perspectives on waiving the final consent for MAiD using a written agreement. Most participants supported expanding eligible people’s access to MAiD following loss of capacity, as they believed it would improve the patients’ comfort and minimize suffering. However, the lack of patients’ input at the time of provision and related ethical and legal challenges may impact healthcare providers’ moral agency and reduce some patients’ access to MAiD. Providers indicated they would enter into written agreements to waive final consent for MAiD on a case-by-case basis. This study highlights the importance of organizational, legal and professional support, adequate resources, clear policies and guidelines for the safety and wellbeing of healthcare providers and to ensure equitable access to MAiD. (shrink)

The recent passing of Bill C-7 has placed Advance Requests for MAID on Canada’s legislative agenda. We discuss how ARMs may create ethical and practical challenges for Canadian medical practice.

Advance directives for withholding life-saving treatment are controversial for dementia patients whose previously expressed wishes conflict with their currently expressed desires. To illustrate this ethical dilemma, McMahan conceives a hypothetical case in which an intellectually proud creative woman signs an advance directive stipulating her refusal to receive life-saving treatment if she contracts a fatal condition with dementia. However, when she develops dementia and forgets this advance directive, she contracts pneumonia and now expresses a desire to live. In response to such (...) dilemmas, scholars like Norman Cantor have defended the moral authority of advance directives by giving credence to one’s prior competent wishes over one’s current incompetent preferences. I argue that their arguments, which are rooted in the principle of respect for autonomy, operate under ableist assumptions about incompetent persons and exclude other important features of respect. I propose an ethics of care model as an alternative moral approach that reconceptualises respect as a matter of caring about people’s contemporaneous interests, even if they are not competently conceived. It fosters the virtues of care by encouraging healthcare providers to recognise dementia patients as legitimate narrative agents capable of authoring their own evolving life story. I argue that the ethics of care model not only provides an ethical defence of the creative woman’s current incompetent desire to live despite her advance directive, but also vindicates our moral intuitions about what it means to demonstrate respect to dementia patients. (shrink)

In a recent Dutch euthanasia case, a woman underwent euthanasia on the basis of an advance directive, having first been sedated without her knowledge and then restrained by members of her family while the euthanasia was administered. This article considers some implications of the criminal court’s acquittal of the doctor who performed the euthanasia. Supporters of advance euthanasia directives have welcomed the judgement as providing a clarification of the law, especially with regard to the admissibility of contextual evidence in interpreting (...) advance euthanasia directives, but suggested that the law regarding advance euthanasia directives should be further relaxed to remove the requirement of current suffering and that an unfortunate consequence of the prosecution is that it is likely to deter doctors from performing euthanasia even in more straightforward cases. This article argues that the court’s endorsement of the use of contextual evidence is problematic, that the case for prioritising prior decisions over current interests has not been advanced by the discussion surrounding this case and that worries about the alleged deterrent effect are not well founded. (shrink)

In the Netherlands, in 2002, euthanasia became a legitimate medical act, only allowed when the due care criteria and procedural requirements are met. Legally, an Advanced Euthanasia Directive can replace direct communication if a patient can no longer express his own wishes. In the past decade, an exponential number of persons with dementia share a euthanasia request with their physician. The impact this on physicians, and the consequent support needs, remained unknown. Our objective was to gain more insight into the (...) experiences and needs of Dutch general practitioners and elderly care physicians when handling a euthanasia request from a person with dementia. We performed a qualitative interview study. Participants were recruited via purposive sampling. The interviews were transcribed verbatim, and analyzed using the conventional thematic content analysis. Eleven general practitioners and elderly care physicians with a variety of experience and different attitudes towards euthanasia for PWD were included. Euthanasia requests appeared to have a major impact on physicians. Difficulties they experienced were related to timing, workload, pressure from and expectations of relatives, society’s negative view of dementia in combination with the ‘right to die’ view, the interpretation of the law and AEDs, ethical considerations, and communication with PWD and relatives. To deal with these difficulties, participants need support from colleagues and other professionals. Although elderly care physicians appreciated moral deliberation and support by chaplains, this was hardly mentioned by GPs. Euthanasia requests in dementia seem to place an ethically and emotionally heavy burden on Dutch GPs and elderly care physicians. The awareness of, and access to, existing and new support mechanisms needs further exploration. (shrink)

According to Kant’s ethics, at least on one common interpretation, persons have a special worth or dignity that demands respect. But personhood is not coextensive with human life; for example, individuals can live in severe dementia after losing the capacities constitutive of personhood. Some philosophers, including David Velleman and Dennis Cooley, have suggested that individuals living after the loss of their personhood might offend against the Kantian dignity the individuals once possessed. Cooley has even argued that it is morally required (...) on Kantian grounds for those who realize that they will lose their personhood as a result of dementia (e.g. Alzheimer’s) to hasten their deaths (e.g. commit suicide). This article specifies circumstances in which post-personhood living might indeed involve an affront to the Kantian dignity of a person who once was. However, the article contends, Kant implies that it is neither morally required nor even morally permissible for someone in an early stage of Alzheimer’s to hasten their death to avoid such an affront, even if they have autonomously chosen to do so. The article adds an ethical perspective to debate on physician-assisted dying, in particular on the moral permissibility of the soon-to-be-demented ending their lives. (shrink)

In the article “On Avoiding Deep Dementia,” Norman Cantor defends a position that I suspect many readers share. In my years writing and speaking on advance directives and dementia, I've found that most people support one of two positions. They are convinced either that advance choices should control the treatment dementia patients receive or that the welfare of a person with dementia should sometimes take priority over earlier choices. As Cantor points out, I support the second position.I agree with several (...) of Cantor's arguments. Where Cantor and I part ways is over the degree of control that advance directives should exert over the care of persons with moderate dementia. Although I don't welcome the prospect of living with dementia, I believe that people with the condition should be represented in the debate over treatment standards. It's not surprising that many, perhaps most, people unaffected by dementia think that their preferences should control the care they would receive as dementia patients. But people taking this position are neglecting the concerns and interests they may have as dementia patients. (shrink)

It is sometimes said by legal scholars that ‘hard cases make bad law’, by which they mean an extreme case provides a poor lens through which to view general laws. It can be said in retort that ‘bad laws make hard cases’; implying that the case may be a controversial one only because the general laws that govern it are poorly formulated. The same tension may be found in medical ethics. Perhaps extreme cases provide a poor lens through which to (...) view general ethical standards, or perhaps the case is controversial by virtue of the prevailing ethical standards being poorly formulated. It becomes important to consider whether a case is controversial or extreme. At first blush, the case of ‘Mrs A’—outlined in this edition by Miller et al 1—is both. The article by Miller et al raises a series of ethical questions concerning Advanced Euthanasia Directives and highlights weaknesses in the Dutch regulatory procedures. Also included in this edition are responses to the Miller et al article, by Menzel2 and Jongsma et al.3 These responses challenge some of implications that Miller et al seek to draw from the case. Miller et al have also replied to Jongsma et al in this edition.4 While the Miller et al article provides a detailed account of the formulation …. (shrink)

The case of Mrs A is a provocative example of euthanasia by advance directive to avoid increasingly severe dementia. It is also a ‘perfect storm’ of a disturbing case, revealing both the challenges that can arise with advance euthanasia directives generally and particular issues in the Dutch procedures. Kim, Miller and Dresser have done a distinct service to bioethics in detailing the case, in explaining the basis of the regional euthanasia review committee reprimand of the administering geriatrician and in highlighting (...) some significant deficiencies in Dutch procedures.1 Many readers, after encountering the case, may find themselves sceptical that AEDs can be an ethically viable vehicle for avoiding living into severe dementia. I will argue that caution and care, not resistance to AEDs for dementia, is in order. Real dilemmas of implementation are inherent in advance directives, to be sure, dilemmas that can be aggravated by a patient’s dementia. Yet much can be done in writing an AED to make its implementation in dementia less problematic, and the Dutch emphasis on intolerable suffering as a necessary condition for euthanasia is not the appropriate legal framework. The difficulties in the case begin with the directive itself. Any advance directive, whether for refusing lifesaving treatment or for physician-assisted death, needs to be clear about what is and is not to happen and when. At first Mrs A’s directive seems to provide a trigger point: ‘I want to make use of the legal right to … euthanasia when I am still at all mentally competent and am no longer able to live at home with my husband. I absolutely do not want to be placed in an institution for elderly dementia patients’. In a revision added a year before her death, the time had become ‘whenever I think the time …. (shrink)

Hastings Center Report, Volume 52, Issue 5, Page 24-31, September–October 2022.

In euthanasia and/or assisted suicide of persons with dementia, the controversy has mostly focused on decisionally incapable persons with very advanced dementia for whom the procedure must be based on a written advance euthanasia directive. This focus on advance euthanasia directive-based EAS has been accompanied by scant attention to the issue of decision-making capacity assessment of persons with dementia who are being evaluated for concurrent request EAS. We build on a previous analysis of concurrent request EAS cases from the Netherlands, (...) which showed that many such cases involve persons with significant cognitive impairment. We use illustrative cases to describe the difficulty of determining decisional capacity in persons whose stage of dementia falls between severely impaired and mildly impaired. We show that the Dutch practice of capacity assessment in such dementia cases is difficult to reconcile with the widely accepted functional model of capacity—a model explicitly endorsed by the Dutch euthanasia review committees. We discuss why such deviations from the standard functional model might be occurring, as well as their ethical implications for dementia EAS policy and practice. (shrink)