Extending euthanasia to people ‘who have become incapable of expressing their wishes’: overview of hearings on a controversial bill

At present, the law provides that only people who have fallen into an irreversible coma may be euthanised on the basis of an advance directive. According to the authors of the proposed law, this leads people suffering from neurodegenerative disease or dementia to request euthanasia ‘too early’ for fear of no longer being able to consent at the time of the act and of being refused euthanasia.

A bill of uncertain scope
The major difficulty of this law in defining the terms ‘incapacity’, ‘dementia’, ‘irreversible’, ‘conscious’ and ‘unconscious’ was raised by many speakers, both experts and MPs. The scope of the law therefore seems dangerously vague, open to subjective interpretation by the doctor who will have to apply the advance declaration and the relatives who will be consulted. What responsibility will the doctor have in interpreting an advance directive? Can we really determine the point at which the person is no longer capable of requesting euthanasia? Determining the ‘opportune moment’ to carry out euthanasia in this context will prove perilous and could lead to abuse of patients who are no longer capable of consenting to euthanasia. According to Jurn Verschaegen of the Flemish Dementia Expertise Centre, it is illusory to believe that an advance declaration can make explicit the person's wishes, given the hypothetical nature of the situation covered by the declaration. Objective, present suffering would have to be established.

From current suffering to anticipated suffering: a criterion that has become superfluous?
During his hearing, neurologist Eric Salmon raised the need to better define the terms and to reintroduce essential criteria that are absent from the proposal, such as that of unbearable and unavoidable suffering. As he pointed out, it is possible to have advanced Alzheimer's disease and not suffer. Describing the moment when suffering becomes unbearable in an advance declaration is tantamount to denying this possible evolution in the experience of the disease. One of the major questions is whether it will be possible to change one's mind if consent is no longer required at the time of the procedure.
Many MPs have also raised the issue of suffering. In the case of dementia, can we still talk about suffering at the time when euthanasia is to be carried out? According to Frieda Gijbels (MP), it is possible that it is more the fear of suffering that leads to the drafting of an advance declaration of euthanasia. According to Bacquelaine, the suffering lies in people's idea of dementia. This last point raises the question of society's view of old age and dementia: as Frieda Gijbels raised, if a law allows people to be euthanised if they are no longer capable of expressing their wishes as a result of dementia or cognitive loss, will euthanasia not be encouraged in practice, to the detriment of solutions that give priority to supporting the person without ending their life? Els van Hoof (MP) stressed the need for multidisciplinary consultation to assess suffering for each euthanasia planned on the basis of an advance declaration for a person with advanced dementia.

Is a negative perception of dementia behind the proposed law?
The explanatory memorandum to the proposed law refers to an ‘Alzheimer's tsunami’, and describes people with dementia as being in a ‘vegetative’ state. These terms reflect a negative perception of dementia and deny the ambivalence of this state, in which people can experience positive moments, as Jurn Verschaegen pointed out. These people move from a cognitive, rational life to an emotional life. They feel love and emotions that are not only negative. It is therefore important, according to the Flemish Dementia Expertise Centre, that euthanasia is not seen as a ‘solution to the lack of funding and the poor image of dementia’.
In turn, the Alzheimer's League, through the voice of its president Sabine Henry, stressed that the extension of active euthanasia to people suffering from degenerative loss seems complex in its application. Guaranteeing patients' autonomy means publicising the assistance available to “give them a perspective on life”. It is essential to counterbalance the disease, which creates a lot of anxiety and false beliefs. The lives of these patients are not necessarily unworthy or painful,’ stresses Sabine Henry. It is important to provide clear and comprehensive information about the disease and the help available, and to facilitate access to palliative care. ‘Believe in life, death is part of life (...) sometimes it doesn't take much for this vision of the inevitability of Alzheimer's disease to become an opportunity to live, hard, important and embarrassing though it may be, but an opportunity to live nonetheless , and not just to stop living as a solution’. Will the choice of life still be possible if a law indicates that illness and dementia ultimately merit a premature death?
In this context, the question arises as to where the patient's wishes really lie. It is from this crucial angle that the European Bioethics Institute has chosen to examine the ethical implications of the proposed law, for which it has been asked to provide a written opinion.