Abstract
When it concerns people with dementia, euthanasia is a highly controversial topic also in the countries that permit this. Some politicians advocate for better access for people with dementia. Yet, physicians are hesitant and experience moral dilemmas. 1 Support from the general public increases, perhaps as a result of the debates initiated by dementia interest groups and the sharing of personal narratives. 2
Our 2024 interview study with people with dementia and a euthanasia wish 3 showed that this wish is often motivated not only by the desire to autonomously decide on one’s own death, but also by the desire to do so for the well-being of others, as not to be ‘a burden’ to them. In this article, we aim to explore the moral connotations of and values implied in this language of ‘not wanting to be a burden for others’, ultimately advocating for the involvement of loved ones in the euthanasia decision-making process for people with dementia.
Autonomy and connectedness
I don’t want others to have problems or suffer because of it. I want to carry myself to the grave (. . .). I don't want my wife to witness me becoming someone else. Because who knows how I’ll react. I want to choose the moment to die myself—while I'm still fully conscious. When I won’t know anything anymore, five years down the line, three years down the line . . . who knows what kind of misery I will leave behind. Victor, 76 years
Victor was an independent man, heading an international company and travelling around the world. 3 He wrote a euthanasia directive immediately after he was diagnosed. In the account two things stood out: nobody should suffer because of his dementia and he wanted to determine his own death. Victor received euthanasia 4 years after diagnosis.
Autonomy has always been a main argument in favour of euthanasia in any discussion and legislation. Autonomy is commonly understood in western medical ethics as an individualistic concept, covering independency, intentional self-rule and freedom from interference by others. 4 However, Victor’s quote indicates that autonomy is not so clear cut when it comes to euthanasia. The longing to autonomously decide on the moment of one's own death is expressed in the same breath as the desire to spare others from suffering. Demonstrating that autonomy cannot be seen as separate from connectedness to others.
Feminist philosophers and care ethicists argue that mainstream appeals to individual autonomy are rooted in a denial of dependency as a fundamental aspect of human life. People cannot be seen in isolation from their network of family, friends and loved ones. Humans are ultimately interdependent.5,6 Empirical research into euthanasia and dementia brings that connectedness into sharp focus. First, it shows that the decision to request euthanasia is often made together with loved ones and can be considered a family matter. 3 This is especially true for people with dementia, whose reliance on family increases as illness progresses. Second, it brings to light that protecting relationships from the impact of dementia is an important motivation for a euthanasia request.3,7 ‘Not wanting to be a burden’ is a phrase that frequently appears in advance directives and in patients’ expressions in the media,2,3 which seems to indicate that this way of thinking is morally accepted.
Within the framework of euthanasia legislation, however, this line of reasoning is excluded from considerations. To safeguard the voluntariness of the patient’s decision, legal protocols are predicated on the above, narrowly defined concept of individual autonomy. It is the physician's responsibility to ensure that this legal requirement is adequately met. As a result, euthanasia is approached as an individual process. Family involvement is thus problematic because of the risk of undue pressure, 8 or of having different interests due to the weight of the caregiving duties or the financial consequences. 9 As a result, family and relational aspects are more difficult to include in the euthanasia process, even though people with dementia are particularly dependent on their families.
How to move forward
The desire to protect loved ones from the impact of dementia is an understandable argument for euthanasia, often an expression of love rooted in self-sacrifice even carrying a somewhat heroic undertone. Most people can probably empathize with Victor and can imagine feeling the same way when in his position. However understandable this argument may be, when it is taken into account in a decision on euthanasia, it takes on a different meaning. It would mean that, as a society, we consider it is right for people to want to die in order to spare others suffering, and that death being ‘administered’ by a doctor is justified. Instead of immediately thinking of euthanasia, there are other ways to address the understandable wish not to be a burden. Taking this wish seriously in conversations on euthanasia means we need to take into account not only autonomy, but also connectedness.
Exactly how this will take shape in practice requires further research, but the direction is clear: we need a more relational approach to autonomy. 6 The conviction underlying current euthanasia policy and law is that the influence of family in euthanasia decisions or motivations can – or should – be avoided. But this is an illusionary belief. Their involvement is usually a given, therefore it is more appropriate to acknowledge and address it in professional (family) counselling and legislation than to ignore or try to exclude it. The perceptions, interests, and values of loved ones should be discussed and considered when a wish for euthanasia arises, as they reflect the deeply relational nature of the wish. The specific expertise of spiritual counsellors, as specialists in existential questions, can be essential to address these relational complexities. Regarding Victor for example, this would mean recognizing and deciphering the meaning of his fear of behaving inappropriately as burdensome for the now-self, the then-self and for his wife.
We are aware that this will complicate euthanasia for people with dementia even further in particular for physicians, but for such a weighty matter, we should not seek shortcuts.
