I thank the committee for the invitation.
I was, as professor of law and bioethics, a member of the Council of Canadian Academies' expert panel on advance requests for MAID. I have studied MAID and euthanasia law and practice, particularly also in the Belgian and Dutch regimes.
As others, I come to this with previous experience. I think of my late mother, who lived in Belgium, where euthanasia based on an advance request is only possible when a person is no longer conscious. Belgium has relatively good elder care, and my mother had some reassurances that she would be treated with the care our elders with dementia deserve and their inherent dignity requires. I think of my Montreal father-in-law, who had a supportive spouse and the means to receive good quality home care.
Many Canadians, however, face he prospect of being warehoused in substandard long-term care homes. We already see how lack of resources and quality care lead persons who are not dying to request MAID. It is in this context that AR for MAID is put forward as a solution to what is referred to as a loss of dignity—yet, we know that quality care is possible and can preserve dignity.
If some recent recommendations are followed, health care providers would need to introduce MAID when informing a patient of a devastating diagnosis of, say, early Alzheimer's. This ignores, in my view, the dynamics of doctor-patient relations and the pressure that can result from professionals suggesting that medicalized death is a solution in a context where lack of social and good elder care support are already undermining consent.
ARs for MAID further raise insurmountable ethical and human rights concerns. We should reconsider them and, in my view, not expand them further. The concerns they raise are reflected in this: Belgium only allows MAID based on advance requests when persons are permanently unconscious, to avoid euthanizing people who still enjoy life and may resist. The Netherlands originally had difficulty with MAID based on advance requests, since they considered it impossible to defend it on the basis that persons “suffer unbearably” if they could no longer confirm this. It now has permitted it for persons, even when they appear to resist.
Neither regime involves explicit, contemporary consent, arguably constitutionally required if we take the Supreme Court's emphasis on “clear consent” in Carter v. Canada seriously. Allowing AR for MAID reflects the idea that prior wishes of patients who cannot fully appreciate what future illness will bring have priority over current interests; that this can be done by procedures that give third persons clarity about levels of suffering and patients' real wishes; and that there are no serious implications for family members, health care providers, other disabled persons and society at large. AR for MAID is, in this view, a question of management.
The Council of Canadian Academies' expert report shows that there is no evidence that procedural solutions can easily address the legal and ethical concerns. Even its discussion of communication tools to reduce uncertainty shows that these solutions are theoretical and speculative.
The International Convention on the Rights of Persons with Disabilities explicitly recognizes in its article 12 the inherent legal capacity of persons with cognitive disabilities. This implies a duty to enable expressions of current interest.
Evidence from the Netherlands, the only jurisdiction that allows euthanasia of persons with advanced dementia who are still conscious, shows what this means. It inevitably involves third party consent and evaluation of the person's suffering. It usually involves surreptitious medicating of patients to suppress resistance and then actively ending life. Contrary to withholding treatment in other health care contexts, it involves an active invasion of a person's bodily integrity. Surreptitious medicating and suppressing resistance violate ethical norms and run counter to the duty to enable an expression of current interests of cognitively disabled persons, which the international convention requires. It moves us into involuntary ending of life. It expresses in law also the view that life with cognitive disability involves loss of dignity.
I urge the committee to read a recent article by Belgian and Dutch experts, who argue that Belgium should avoid the Dutch approach. Belgium legalized euthanasia in 2002. Twenty years later, and informed by the practice in the neighbouring country, it still hasn't expanded its AR regime for MAID. Our current AR regime for MAID already goes beyond Belgian law, while our social and health care support is below the OECD average.
We should listen to experts who tell us, based on the Dutch experience they've studied—and these are not people who are against legalized MAID—that ARs for MAID create insurmountable ethical and legal concerns—