Even before the adoption of the laws permitting euthanasia in Quebec and Canada, which require that it be requested by a capable adult, the pressure to extend it to incapable persons was looming. This possibility is now being considered by an advisory panel to the Canadian government (Council of Canadian Academies), and the recently elected political party in Quebec (Coalition Avenir Québec; CAQ) made it part of their platform in the recent provincial election. A group of researchers (Bravo, G. et al.) has surveyed family caregivers, nurses and doctors about it and concluded that most favour extending the law to permit MAID by advance request for persons incapable of decision-making. The pressure is on. If administering death is a good, why refuse it to anyone?
But who says it’s a good? It was sold to the politicians and judges as an extreme answer to an extreme situation. And since when is ethics decided by opinion surveys?
The wish for euthanasia by advance request is a response, not to present suffering, but to fear of hypothetical future suffering. It could be critiqued from many angles. Let us consider a few: the questionable validity of written advance directives as a decision-making tool, the lack of concurrent consent at the time of death, and the very real danger of elder abuse.
The notion of using written directives for medical decisions, in the event of future loss of decision-making capacity, has been popular for a few decades. However, it is not at all clear that they are useful when used alone. Concerns about the applicability of written directives include difficulty envisaging future events while well, and the impossibility of foreseeing all possible medical scenarios. Many have concluded that such documents “promise more control over future care than is possible”.[i] Widely-used education tools now tend to emphasize reflection and discussion over completion of a written document. [ii]
The notion of choosing, when one is well, to have one’s life terminated upon reaching a certain degree of loss of autonomy or incapacity is fraught with ethical concerns. Such a directive is different not in degree, but in kind, from one that authorizes limiting life support in the event of critical or terminal illness, which is simply a choice to allow the illness to run its natural course.
In the case of cognitive disorders, the directive denies the person the right to change his or her mind. It requires the physician to directly cause the death of someone who is not asking to die, as illustrated by the recent case in the Netherlands of a woman who was sedated, restrained and euthanized against her will in obedience to such a directive.[iii] It binds the incapable person to a decision made at a moment in the past, despite the fact that he or she may have a very different outlook on life and different wishes from those expressed while still legally capable. Persons with dementia often rate their quality of life as better than their caregivers rate it.[iv] There is no reason not to respect the wishes of an incapable person as long as they are not harmful to that person.[v]
In the Netherlands euthanasia is permitted by advance directive but remains very controversial and rarely done, primarily because of the impossibility of knowing the patient’s current wishes.[vi] In 2017 a group of Dutch doctors spoke out against the practice: “Our moral reluctance to end the life of a defenseless human being is too big”, they wrote. Some physicians specialized in euthanasia were among the signatories.[vii]
Dutch academic Boris Brummans wrote in his 2007 article Death by Document [viii] of his father’s euthanasia death through an advance directive: “Although the euthanasia was meant to liberate my dad from the conventional constraints of suicide, its textual, declarative form turned him into a prisoner of himself… By signing the euthanasia declaration… my father created a persona of, and for, himself that transcended space and time, based on the person he thought he would be. On what were these thoughts based? Hollow images of a self not yet lived; meager ideas about a life not yet fleshed out.”
Finally, the risk of elder abuse is ever-present.[ix] Even cognitively intact older persons are often dependent on the younger generation, emotionally as well as for help in maintaining their autonomy and navigating a world that has changed since their time. Early cognitive impairment, recognized or not, increases the dependency and the power imbalance. Even caring and well-intentioned families may give a subtle message that the older person’s care is burdensome to them. When the caregivers are abusive this power differential can lead to an undue influence to sign legal documents, such as a will or protection mandate (durable power of attorney) in favour of the abuser.[x] [xi] I have years of experience with such situations and have often testified at court hearings in favour of patients, including the woman whose story was told in a 2016 Montreal Gazette article.[xii] Private residential or home care for a dependent older person is expensive and can rapidly deplete the expected inheritance of the next generation. Advance directives authorizing death would provide a new and more definitive tool for greedy heirs.[xiii]
We can do better for our elders. We can care for them.
Make euthanasia unimaginable.
Sincerely,
Catherine Ferrier
President
i Perkins, Henry S. Controlling Death: The False Promise of Advance Directives. Annals of Internal Medicine, July 3, 2007.
ii http://www.advancecareplanning.ca/
iii http://www.independent.co.uk/news/world/europe/doctor-netherlands-lethal-injection-dementia-euthanasia-a7564061.html
iv Zucchella C et al, Quality of life in Alzheimer disease: a comparison of patients’ and caregivers’ points of view. Alzheimer Dis Assoc Disord. 2015 Jan-Mar;29 (1):50-4
v http://www.alzheimer.ca/en/Living-with-dementia/Caring-for-someone/Making-decisions
vi Pols, H., Oak, S, op. cit.
vii https://nltimes.nl/2017/02/10/dutch-doctors-euthanasia-advanced-dementia-patients
viii Brummans, Boris H. J. M. Death by Document: Tracing the Agency of a Text. Qualitative Inquiry 2007 13: 711.
ix https://cnpea.ca/images/canada-report-june-7-2016-pre-study-lynnmcdonald.pdf
x https://assetsforcare.seniorsrights.org.au/relationship-breaks-down/equity/undue-influence-unconscionable-dealing/
xi http://www.donnellgroup.ca/resources/estate-litigation-articles/undue-influence-canada
xii http://montrealgazette.com/news/veronika-piela
xiii https://www.mercatornet.com/careful/view/elder-abuse-a-real-and-present-danger/20318