According to a survey conducted last week by the Université de Sherbrooke, in Quebec, 91 percent of the family caregivers surveyed would agree to extending euthanasia to terminally ill people who are incapable of decision-making, if there were “signs of distress and a written directive”. These latter “conditions” remind us of what was supposed to be the principal criterion in the Quebec law, that of the person being at the “end of life”, which is already being challenged in the courts at the present time.
As usual, instead of seeing in these results a cry of distress from family caregivers of persons with Alzheimer and other dementias, the spotlight is once again focused on euthanasia with its public aura as a solution to suffering. At the same time, it is a real cold shower on all the organisations that accompany with such dedication incapable people and their families. Could we not also infer from this result that only 9 percent of caregivers in Quebec have access to high-quality professional support?
However, before getting carried away by the frenzy of a debate on euthanasia, it would be wise to consider the implications of extending induced death to incapable persons.
First of all, we must recall that the drive for extension of euthanasia to this group was triggered by the high-profile murder of a woman with Alzheimer’s by her husband who “cracked” because he felt left alone. “No one asked me how I’m doing,” he confessed immediately after his act of homicide. Our political decision-makers have turned this murder motivated by desperation into a Trojan horse to promote including a group of extremely vulnerable people among those eligible for medically induced suicide.
In the event of this extension of euthanasia being accepted – less than two years after the law came into force – two “safeguards” that were deemed fundamental at the outset would automatically fall: decision-making capacity and consent to choose death.
Moreover, in the depth of the current debates, a dramatic message hides behind the possibility of extending euthanasia to people who are no longer able to make their own decisions. Presumably, these people would no longer be fully considered as human beings.
Indeed, their will to live at the moment of their killing would no longer have to be respected, under the pretext of their having written an advance directive in the past. Therefore, it is not a question of consenting or refusing consent to medical care in the event of incapacity – as is the case with the advanced medical directives that are already legal in Quebec. Rather, it is a matter of allowing a person to kill someone who is unable to consent, even when there is no question of artificial life support.
The difference is essential.
In such circumstances, it would be legally – and appear to be morally – possible to explain to them that they are no more than the shadow of a real person who is somehow already dead and who put in writing, in their “true lifetime”, that they would like us to kill them if they became incapable. “You no longer agree? You seem happy now? It does not change anything, you cannot change your mind. Your will to live no longer counts,” we would answer them. “What matters is the document you signed when you were a real person, saying that you must now be put to death. Yes, putting you to death are the exact words since you are in such a vulnerable state that you have become incapable of making an informed decision about yourself or your property. This is the definition of incapacity.”
Thus, by denying their right and even their desire to live, people living with a form of dementia will be implicitly regarded as sub-human beings who will inevitably have to bow to the will of their "former self".
Moreover, this scenario is not some kind of scarecrow. It is not at all hypothetical since we had a concrete example recently in the Netherlands, where a woman with dementia was euthanized against her will. Moreover, the possibility of such a turn of events is reinforced by another result of the Université de Sherbrooke's poll, which reveals that 72 percent of respondents were in favour of euthanasia “even in the absence of a written directive".
Of course, the suffering of family caregivers is very real, but their reaction stems largely from the woeful lack of support for the majority of the people affected by this type of disease. As serious and revealing as it may seem, it has unfortunately become common to hear that death is preferable to life in a CHSLD (nursing home). It seems to me that this would be a good starting point for tackling the problem at the source...
Meanwhile, the dangerous tangent that legal euthanasia installs in every society that has endorsed it continues fatefully its advance in Quebec. It is insinuating into our collective thinking the notion that death – not good health care, quality support and adequate living conditions – is a solution to suffering for you and your loved ones. In the current debate, the logic inherent in assisted suicide now plunges another condition of life into disgrace, such that the death of the people who live with it is presented as preferable.
Yet, in a promotional trailer about the Carpe Diem approach, Ms. Blandine Prévost, 38, suffering from Alzheimer's disease, perfectly sums up the human alternative that should be advocated: "It is in changing the way we are seen by people that lies the hope that I can be a person right to the end."
In other words, beyond debates on euthanasia, it seems therefore urgent to ask ourselves, as a society, how we consider people who have rendered incapable because of illness. Do we still grant them their full humanity?