Authorising euthanasia and assisted suicide with advance euthanasia directives is permitted, yet debated, in the Netherlands. We focus on a recent controversial case in which a Dutch woman with Alzheimer’s disease was euthanised based on her AED. A Dutch euthanasia review committee found that the physician performing the euthanasia failed to follow due care requirements for euthanasia and assisted suicide. This case is notable because it is the first case to trigger a criminal investigation since the 2002 Dutch euthanasia law (...) was enacted. Thus far, only brief descriptions of the case have been reported in English language journals and media. We provide a detailed description of the case, review the main challenges of preparing and applying AEDs for persons with dementia and briefly assess the adequacy of the current oversight system governing AEDs. (shrink)

When patients have progressive and incurable dementia, should their advance directives always be followed? Contra Dworkin, Dresser argues that when patients remain able to enjoy and participate in their lives, directives to hasten death should sometimes be disregarded.

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 It also implies we are using an outdated diagnosis-based view of capacity.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)

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)

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)