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)

BackgroundDementia care is essential to promote the well-being of patients but remains a difficult task prone to ethical issues. These issues include questions like whether manipulating a person with dementia is ethically permissible if it promotes her best interest or how to engage with a person who is unwilling to recognize that she has dementia. To help people living with dementia and their carers manage ethical issues in dementia care, we developed the CARE intervention. This is an intervention focused on (...) promoting the ethical self-efficacy of people living with dementia and carers, i.e., their confidence that they can manage ethical issues when they occur. The purpose of this paper is to explain and discuss how we have developed the CARE intervention to promote the ethical self-efficacy of people living with dementia, their family, and professional carers through a specific and, we believe, new use of literary texts.MethodsThe CARE intervention has been developed in two phases: First, we conducted a needs assessment of the occurrence of ethical issues in dementia care and the need for an intervention to support people living with dementia and their carers in managing such issues. Second, in a design phase, we developed the CARE intervention to meet identified needs.ResultsTo address identified ethical issues in dementia care we designed the CARE intervention as a workshop format where people living with dementia and carers can meet, discuss literary texts, and deliberate on how to solve such issues. The workshop is structured by the following elements: An agenda of ethical issues, a collection of literary cases exemplifying ethical issues, a moderator with an understanding of dementia care, and an overview of the ethical principles relevant to the discussion of ethical issues. >This workshop concept is operationalized in three applications tailored to meet the specific ethical issues of each of the study´s three target groups: people living with dementia and family carers, professional and family carers, and professional carers.ConclusionWe conclude the paper by stating that it is possible to develop an intervention that promotes the ethical self-efficacy of people living with dementia and family and professional carers. (shrink)

The proposal of the new criteria for the diagnosis of Alzheimer’s disease based on biomarker data is making possible a diagnosis of AD at the mild cognitive impairment or predementia/prodromal– stage. Given the present lack of effective treatments for AD, the opportunity for the individuals to personally take relevant decisions and plan for their future before and if cognitive deterioration occurs is one the main advantages of an early diagnosis. Advance directives are largely seen as an effective tool for planning (...) medical care in the event the subject becomes incompetent. Nevertheless, their value has been questioned with regard to people with dementia by scholars who refer to the arguments of personal identity and of patient’s changing interests before and after the onset of dementia. In this paper, I discuss the value of advance directives in Alzheimer’s disease and other kind of dementia. Despite critics, I argue that advance directives are especially advisable in dementia and provide reasons in favor of their promotion at an early stage of the disease as a valuable tool to respect patients’ values and preferences on medical treatment, including participation in research and end of life decisions. I mainly support advance directives that include both decisions regarding health care and the appointment of an attorney in fact. I conclude that patients with AD at a prodromal or early stage should be offered the opportunity to execute an advance directive, and that not to honor a demented individual’s directive would be an unacceptable form of discrimination towards those patients. (shrink)

Volume 20, Issue 8, August 2020, Page 90-92.

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)

Advance directives (ADs) have for some time been championed by ethicists and patient associations alike as a tool that people newly diagnosed with dementia, or prior to onset, may use to ensure that their future care and treatment are organized in accordance with their interests. The idea is that autonomous people, not yet neurologically affected by dementia, can design directives for their future care that caregivers are morally obligated to respect because they have been designed by autonomous individuals. In this (...) paper, we first criticize the idea that ADs can retain moral authority in severe dementia by arguing that it is paradoxical. Second, we consider two arguments that initially seem to refute this critique of ADs, but we eventually dismiss them. The first argument states that ADs retain moral authority in severe dementia because autonomously formed interests, for example, ADs, can only be appropriately discarded by autonomous persons. This we term the historical autonomy argument. We dismiss it by demonstrating how we, in analog cases, are not obligated to continue to respect autonomously formed interests even though they have been discarded under nonappropriate conditions. The second argument is that ADs can be justified by what we term external interests. While we agree that people with severe dementia plausible can be said to have external interests, we show that ADs cannot express such interests and hence cannot be justified by them. We conclude that none of the discussed arguments support the use of ADs and because of this, the idea of ADs should be reassigned. (shrink)