Catherine Ferrier raises concerns about advance requests for medical assistance in dying.
The June 6 deadline for legislation in response to the Carter judgment has come and gone, and our government has yet to adopt a law regulating medical assistance in dying. Too few of us have any idea what we are rushing into.
In the Carter decision the Supreme Court judges stated that the risks associated with physician-assisted death can be limited through a carefully designed and monitored system of safeguards. In contrast, the pressure is on to offer death as a solution for all forms of suffering, available to virtually everyone, including those who fear future suffering or disability.
The Standing Senate Committee on Legal and Constitutional Affairs wants Bill C-14 amended to include the recommendation of the Special Joint Committee on Physician-Assisted Dying, “That the permission to use advance requests for medical assistance in dying be allowed any time after one is diagnosed with a condition that is reasonably likely to cause loss of competence or after a diagnosis of a grievous or irremediable condition but before the suffering becomes intolerable….”
I have spent the last 30 years diagnosing, treating, and caring for people with Alzheimer’s disease and other dementias. It takes no special insight to realize that they are the principal intended “beneficiaries” of this recommendation.
Dutch academic Boris Brummans wrote in his 2007 article Death by Document of his father’s euthanasia death through an advance directive. His father had cancer, not dementia, but the issue is the same.
I used to be in favor of euthanasia… 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 (and us into his cellmates). By signing the euthanasia declaration… my father created a persona of, and for, himself… 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.
The mantra behind advanced directives is “choice,” whereby one chooses to die rather than live with the “indignity” of dementia, of dependence, of becoming a burden. Brummans questions whether one can truly choose for one’s future self. He describes how he and his family members projected themselves into the future “in ways that deprived us, especially my dad, from the very liberty we thought to have signed for”.
A diagnosis of dementia is a major life crisis. Those of us who have been through even lesser crises know that our judgment is not at its best when flooded with overwhelming emotions, fears, and questions. Most of us would be sensible enough to defer life-changing decisions until we are calm enough to think clearly. But for the person diagnosed with dementia the clock is ticking and the advance directive must be signed before decision-making capacity is lost.
Troubling? I think so.
Imagine that a person has reached the stage at which his advance directive authorizes death. Imagine that he is no longer aware of his cognitive deficits and is happy. He doesn’t want to die. Imagine that he has a loving family. Who will give the euthanasia order? How will the family explain it to him? Will that advance directive take precedence over his current wishes? Perhaps he wrote it in order to relieve his family of the burden of caring for him. Instead, they will carry the burden of guilt for the rest of their days if they follow it. Troubling indeed. What if his situation was less happy and he had behavioural problems, incontinence, or wandering? These issues would make care burdensome. Imagine having to request euthanasia in those circumstances. Capital punishment for wetting the bed.
Imagine, now, a family that is less loving. A family that is fighting over the inheritance while their mother is still alive and fighting over how much of it is spent on nursing care. Now, consider who will give the euthanasia order? And in whose interest? Ever more troubling.
Further, imagine that there is no family and the administration of the nursing home is under orders from the health ministry to free up beds for patients to be transferred from the hospital.
Far-fetched? On the contrary, in geriatrics we see all these scenarios on a regular basis. The only thing missing at the time is legal authorization for death.
Only a few weeks ago there was a story in the Montreal Gazette about a patient of mine who lost her freedom and her life’s savings after a protection mandate, later found to be forged, stripped away her rights without anyone speaking to her or questioning the validity of the mandate. Elder abuse is rampant. The system is overburdened. If we allow death to be authorized by a written document we’re giving abusers another, more definitive, tool.