Some jurisdictions that have decriminalized assisted dying exclude psychiatric patients on the grounds that their condition cannot be determined to be irremediable, that they are vulnerable and in need of protection, or that they cannot be determined to be competent. We review each of these claims and find that none have been sufficiently well-supported to justify the differential treatment psychiatric patients experience with respect to assisted dying. We find bans on psychiatric patients’ access to this service amount to arbitrary discrimination. (...) Proponents of banning the practice ignore or overlook alternatives to their proposal, like an assisted dying regime with additional safeguards. Some authors have further criticized assisted dying for psychiatric patients by highlighting allegedly problematic practices in those countries which allow it. We address recent evidence from the Netherlands, showing that these problems are either misrepresented or have straightforward solutions. Even if one finds such evidence troubling despite our analysis, other jurisdictions need not adopt every feature of the Dutch system. (shrink)

Volume 19, Issue 10, October 2019, Page 1-2.

At the height of the COVID-19 crisis in the Netherlands a shortness of intensive care beds was looming. Dutch professional medical organizations asked a group of ethicists for assistance in drafting guidelines and criteria for selection of patients for intensive care treatment in case of absolute scarcity, when medical selection criteria would no longer suffice. This article describes the Dutch context, the process of drafting the advice and reflects on the role of ethicists and lessons learned. We argue that timely (...) interaction between clinical and ethical expertise is necessary since the distinction between medical and non-medical considerations is not as clearcut as sometimes assumed. Furthermore, pragmatic considerations related to the specifics of an epidemic are of importance, for example, in relation to prioritizing health care workers. As a consequence, any protocol already present before the pandemic would need alterations to fit the current situation. The ‘fair innings’ criterion we proposed, rephrased as an argument of intergenerational solidarity, was considered reasonable by professionals as well as patient organizations. While it is desirable to draft ethical guidelines in ‘peacetime’ as a matter of pandemic preparedness, the pressure of an actual crisis facilitates decision-making, although it will also complicate a more democratic approach. (shrink)

Children and adults with dementia are vulnerable populations. Both groups are also relatively seldom included in biomedical research. However, including them in clinical trials is necessary, since both groups are in need of scientific innovation and new therapies. Their dependence and limited decision-making capacities increase their vulnerability, necessitating extra precautions when including them in clinical trials. Beside these similarities there are also many differences between the groups. The most obvious one is that children have an entire life ahead of them (...) and will become persons with certain ideals and preferences, while adults with dementia have lived a life in which they have expressed their ideals and preferences. Some of the available research guidelines recognize these differences, setting one list of specific requirements for groups of incapacitated adults and another list for children. Other documents, however, do not differentiate and only set requirements for subjects unable to consent as a single category of subjects. In this article we analyse to what extent the similarities and differences between the two groups are represented in legal documents and ethical guidelines. The article presents an overview and an analysis of the requirements for doing research with children and dementia patients. We conclude with suggestions about how to better incorporate the morally relevant aspects of these two groups in legislation and ethical guidelines. (shrink)

In order to discover an effective treatment for dementia it is necessary to include dementia patients in clinical research trials. Dementia patients face an increased risk to lose the capacity to consent to research participation, and research possibilities with incompetent participants are legally strictly limited. One solution is for patients to consent to research through an advance research directive whilst still competent. In order to explore whether such a directive would be useful and valuable in practice we conducted a qualitative (...) study. We explored the opinions and arguments of researchers in the field of dementia, aiming to map the possibilities and constraints of ARDs. It was argued that a positive ARD could be valuable to discuss research participation with proxies, and patients with a negative ARD will be excluded from research trials. However, it is argued that an ARD cannot replace the informed consent procedure, and in practice proxy dissent will overrule written consent. The practical use of these directives is thus limited, as most researchers will not comply with positive directives. (shrink)

The American Journal of Bioethics, Volume 11, Issue 6, Page 43-44, June 2011.

Some jurisdictions that have decriminalized assisted dying exclude psychiatric patients on the grounds that their condition cannot be determined to be irremediable, that they are vulnerable and in need of protection, or that they cannot be determined to be competent. We review each of these claims and find that none have been sufficiently well-supported to justify the differential treatment psychiatric patients experience with respect to assisted dying. We find bans on psychiatric patients’ access to this service amount to arbitrary discrimination. (...) Proponents of banning the practice ignore or overlook alternatives to their proposal, like an assisted dying regime with additional safeguards. Some authors have further criticized assisted dying for psychiatric patients by highlighting allegedly problematic practices in those countries which allow it. We address recent evidence from the Netherlands, showing that these problems are either misrepresented or have straightforward solutions. Even if one finds such evidence troubling despite our analysis, other jurisdictions need not adopt every feature of the Dutch system. (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 Act of 2002 was installed in the Netherlands. The case concerned euthanasia on the basis of an advance euthanasia directive 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 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)

The Dutch law states that a physician may perform euthanasia according to a written advance euthanasia directive when a patient is incompetent as long as all legal criteria of due care are met. This may also hold for patients with advanced dementia. We investigated the differing opinions of physicians and members of the general public on the acceptability of euthanasia in patients with advanced dementia.

The next World Congress of Bioethics will be held in Doha, Qatar. Although this location provides opportunities to interact with a more culturally diverse audience, to advance dialogue between cultures and religions, offer opportunities for mutual learning, there are also huge moral concerns. Qatar is known for violations of human rights ‐ including the treatment of migrant workers and the rights of women ‐ corruption, criminalization of LGBTQI+ persons, and climate impact. Since these concerns are also key (bio)ethical concern we (...) call for a broad debate within the bioethics community whether organizing and attending the World Congress in Qatar is ethically problematic and how ethical concerns should be dealt with. (shrink)

Dementia is highly prevalent and incurable. The participation of dementia patients in clinical research is indispensable if we want to find an effective treatment for dementia. However, one of the primary challenges in dementia research is the patients’ gradual loss of the capacity to consent. Patients with dementia are characterized by the fact that, at an earlier stage of their life, they were able to give their consent to participation in research. Therefore, the phase when patients are still competent to (...) decide offers a valuable opportunity to authorize research, by using an advance research directive. Yet, the use of ARDs as an authorization for research participation remains controversial. In this paper we discuss the role of autonomous decision-making and the protection of incompetent research subjects. We will show why ARDs are a morally defensible basis for the inclusion of this population in biomedical research and that the use of ARDs is compatible with the protection of incompetent research subjects. (shrink)

Children and adults with dementia are vulnerable populations. Both groups are also relatively seldom included in biomedical research. However, including them in clinical trials is necessary, since both groups are in need of scientific innovation and new therapies. Their dependence and limited decision‐making capacities increase their vulnerability, necessitating extra precautions when including them in clinical trials. Beside these similarities there are also many differences between the groups. The most obvious one is that children have an entire life ahead of them (...) and will become persons with certain ideals and preferences, while adults with dementia have lived a life in which they have expressed their ideals and preferences. Some of the available research guidelines recognize these differences, setting one list of specific requirements for groups of incapacitated adults and another list for children. Other documents, however, do not differentiate and only set requirements for subjects unable to consent as a single category of subjects.In this article we analyse to what extent the similarities and differences between the two groups are represented in legal documents and ethical guidelines. The article presents an overview and an analysis of the requirements for doing research with children and dementia patients. We conclude with suggestions about how to better incorporate the morally relevant aspects of these two groups in legislation and ethical guidelines. (shrink)

Schuklenk and van de Vathorst's paper is a very welcome addition to the literature on the assisted dying debate and will be of great interest to clinicians working in the field of mental health.1 Many psychiatrists will have had patients who have asked them to allow them to die, to desist in their efforts to prevent their suicide, and one of us has had personal experience, outside of professional life, of being asked to aid in someone's attempt to end (...) their life in the context of an episode of mood disorder. The person with depression asking professionals, friends and family members to aid them in ending their life is a very real phenomenon. In their discussion, Schuklenk and van de Vathorst's paper uses two principles that we endorse and add weight to their argument: namely, the reality of suffering in depression and the parity of mental and physical illness. Indeed, the case Schuklenk and van de Vathorst make is a strong one and our commentary will focus on the premise of the argument around choosing death and some empirical clarification about competence in depression and the nature of treatment-resistant depression (TRD) and its prognosis. The conceptual concern we wish to discuss in relation to assisted dying, endorsed by the state and legislature, is not linked to any moral or religious concern, or even on grounds related to ‘slippery slope’ or ‘abuse’ arguments. Rather the worry is how one could operationalise decisions around assisted dying as based on competence and capacity and view such decisions as rational. I think this concern is not limited to depressive illness, but to all decisions regarding choosing non-existence. Schuklenk and van de Vathorst offer the following useful criteria to regulate assisted suicide:1. (shrink)

Rieke van der Graaf, Karin Jongsma, Martine de Vries, Suzanne van de Vathorst, and Ineke Bolt have done well to voice ethical concerns over the decision of the IAB to host the next WCB in Qatar. Conferences should be more sustainable. Yet, attention to the carbon impact of conferences—and, perhaps, any country that a person might travel to for business or pleasure—are only one small part of environmentally responsible citizenship, especially for those trained in ethics and committed to health. (...) Both bioethics as a discipline and bioethicists as individuals need to interrogate their environmental choices. To this end, some ecological choices are more obvious targets of ethical scrutiny—diet and travel—while others appear sacrosanct, like reproduction and even healthcare use. This underscores the importance of making sustainable and ethical organizational choices, such as where to hold a conference, without absolving environmental accountability in other ethical calculations. Many organizations in academic and clinical medicine need to make drastic alterations in their practices and policies to effectively mitigate carbon. While the burden is not only on bioethics alone, the expectation that it should be remains. (shrink)

Treatment-resistant depression (TRD) holds centrality in many debates regarding psychiatric euthanasia. Among the strongest reasons cited by opponents of psychiatric euthanasia is the uncertainty behind the irremediability of psychiatric illnesses. According to this argument, conditions that cannot be considered irremediable imply that there are possible remedies that remain for the condition. If there are possible remedies that remain for the condition, then patients with that condition cannot be considered for access to euthanasia. I call this the irremediability requirement (IR). I (...) argue that patients with TRD can, indeed, meet the operationalisation of irremediability in the IR. This is because the irremediability it asks for is not some global or absolute irremediability, but rather a present irremediability based on the current state of medical science. I show this by considering irremediability relating to (1) possible future treatments and (2) not trying presently available alternative treatments. I extend Schuklenk nd van de Vathorst’s argument from parity to terminal malignancies, to show that (1) is an unreasonable expectation for all cases of euthanasia. Taking (2) as a more serious opponent to psychiatric euthanasia, I show how the IR, based on how it is presently operationalised, can be realistically applied to cases of TRD. I do this by further developing Tully’s argument on broad-sense treatment resistance with the robust empirical data from the STAR*D trials. If my argument from Tully’s is valid, then we have reasons to, again, seek parity between the operationalisations of irremediability in terminal malignancies and TRD. (shrink)