Describing time in writing: a shift towards the written statement in euthanasia with dementia
Drawing on extensive research on the end of life with dementia in the Netherlands, Natashe Lemos Dekker discusses how, despite the increasing importance of a written statement, the timing of euthanasia with dementia remains an ethical challenge.
This week, from 13 to 19 February, 2021, is the ‘week of euthanasia’, organized by the Dutch Society for a Voluntary End of Life (NVVE). This year’s theme is euthanasia for people with dementia.
Even though the annual number of cases of euthanasia with dementia has been relatively low, accounting for about 2 percent of the total number of euthanasia cases (RTE 2019), the possibility of euthanasia with dementia has been a major topic of discussion in public debates.
While euthanasia was legalized in the Netherlands in 2002, a 2019 verdict from the Dutch Supreme Court implied that a written statement can in practice replace verbal confirmation of a person’s wish for euthanasia. A medical doctor who in 2016 administered euthanasia based on such a written statement, was initially prosecuted. These charges were refuted by the Supreme Court, which ruled that the physician had acted diligently and in accordance with the law. This verdict seems to have at once reconfigured and sharpened the framework for the debate on how and when euthanasia should be possible in the context of dementia.
Yet, the ethical concerns for euthanasia with dementia, as well as the temporal question of when would be the ‘right time’ for euthanasia, remain highly complicated and largely unresolved. In my research I have addressed the role of time in the management of the end of life with dementia in the Netherlands, showing that time and morality are entangled in the process of striving towards a ‘good’ death. This entanglement, I observed, became particularly pertinent in euthanasia requests. For this study, I conducted ethnographic fieldwork in nursing homes in the Netherlands, and interviewed people with dementia, their family members, and professional caregivers.
Too early – too late
One of the main concerns in the Dutch debate, has been that a person may, due to their dementia, become unable to verbally confirm their euthanasia request. This causes friction in relation to the legal criteria of due care, which state that the person’s suffering must be unbearable, and that their request for euthanasia must be voluntary and well-considered.
As I have discussed elsewhere, people tend to formulate when they would want to receive euthanasia, based on their images of what the future with dementia might look like. They often mentioned the moment they would no longer be able to recognize loved ones, or practice a hobby, such as reading or painting. As other studies have also noted, an important boundary for many was also the moment they would have to move to a nursing home.
However, such boundaries are not fixed. In my research, I noted that sometimes people with dementia would learn to live with the changes in their situation and consider life worthwhile, even if they had previously thought these changes would be unbearable. Hence, what they considered to be ‘unbearable suffering’ would be placed ever further into the future and the moment of euthanasia would be deferred.
Moreover, it may be difficult for a person with dementia to oversee how their illness is progressing, and when they might be reaching the conditions they had set as indicators of their wish for euthanasia. There may be a ‘tipping point’, when it becomes increasingly uncertain if they will still be able to confirm their request, and therefore, whether they will be able to conform to the criteria that the request is well-considered. Postponing the moment for euthanasia is common and in some cases means that it is no longer possible—a dilemma of having to request it ‘too early’ so as to avoid being ‘too late’.
Here, the written statement is considered to offer a way out of this dilemma. It allows the person with dementia to put their wish for euthanasia in writing, for a moment when they will be unable to express this verbally.
Timing euthanasia with a written statement
With the decision of the Supreme Court, the center of gravity has shifted towards the previously established wishes in such a written statement. Therefore, euthanasia may become more accessible for people with dementia.
With a written statement, responsibility is transferred to family and medical professionals. However, making the decision remains difficult. In everyday life, the person with dementia may appear content, even though they are in a situation they had previously described as one they wished to avoid. Families and medical professionals may struggle with the question of whether they should follow the wishes previously established in the written statement, or the current expressions of the person with dementia.
Moreover, family members I spoke with also mentioned feeling responsible to safeguard the boundaries established by the person with dementia, since the person with dementia was unable to do so. They attached particular importance to the idea that ‘she would not have wanted to be in this situation.’
It is, in such a scenario, up to the family and medical professionals to assess when the conditions, set by the person with dementia in their directive, have been reached. Taking such a decision is seldom straightforward, as written directives are often ambiguous and can be interpreted in different ways. Consider the following written statement, as it was formulated (in Dutch) by one of my interlocutors:
“Below, I specifically describe the state of dementia in which I want euthanasia. I wish to end my life before I am no longer able:
- To recognize my (grand)children, family and friends, and communicate,
- To live at home,
- To grasp and control my thinking and conduct,
- To practice the last of my hobby’s: painting.
- My person and character changes (further),
- I become incontinent, difficult and aggressive,
- I need assistance in daily tasks of personal care.”
Some of these conditions are clear and are not likely to cause much uncertainty. Others, however, remain open for interpretation. It can also be unclear whether all, or some of these conditions should have been reached. While the written statement thus offers a guideline, eventually, family members together with the physician will have to decide when these conditions have been met.
So even though the written statement appears to have gained importance, the question of when remains unaddressed. Even if the written statement becomes more important in the consideration, finding the ‘right time’ for euthanasia remains very difficult and is experienced as very challenging by family members.