Letitia Meynell considers a critique of advance directives for medical assistance in dying and suggests that the wishes of capable persons for their future incapable selves should be respected.
In “Dementia, Advance Directives & MAiD,” Valentina Romano argues for continued restriction on advance directives for medical assistance in dying (MAiD). Her argument takes up the idea that a person with severe dementia is not the same person they were prior to the dementia, and for this reason they should not be allowed to make a life-ending decision for this future ‘other’ person. She writes: “For a person facing dementia to make a life-ending decision for a future self is more equivalent to that patient making such a decision for a complete stranger.”
Although it seems implausible to me that a patient with advanced dementia is a complete stranger to their former self, my main worry with Romano’s position is that it fails to appreciate what actually happens when we die. Once we start thinking clearly about the embodied people who get dementia and die it seems to me that our past selves are likely the best guardian for our future selves.
Watching my mother die “naturally” before the current law came into effect, and currently watching my father’s cognitive decline, informs my view. One of the things that helped my mother come to terms with her terminal cancer diagnosis was that my father had been diagnosed with dementia a month before. As losing their minds was the real horror for both of my parents, my mother figured she’d been dealt the better hand.
[/caption]My father’s diagnosing neurologist (a hero in my eyes for his transparency and honesty), prescribed Donepezil for my father and expressed his hopes that it would keep him competent until he died from something else. Dying from dementia is what my father and I call “the long way out.” It’s the path he watched his mother take. So, when my father says he would rather be dead than in the advanced stages of dementia, his judgement strikes me as a rational one that comes from an intimate knowledge of the relevant facts.
My own fear for my father is coloured by my mother’s death. I imagine what will happen to him once he is no longer competent if he gets pancreatic cancer and is forced, like my mother, to die from that disease because he is not eligible for MAiD.
Opponents of MAiD often tout the capacity of palliative care to deal with the pain that accompanies many terminal diseases without actually addressing what this means, or considering the havoc pain medications can play on a dying body. For my mother, who had excellent palliative care, pain management meant self-medication with hydromorphone. She was instructed to take the smallest possible dose and to “stay ahead of the pain.” Hydromorphone, like other opioids, is constipating. As unpleasant as constipation is for anyone, it posed particular problems for my mother, whose cancer was in her gastrointestinal system. When eating anything is a challenge, consuming unpleasant laxatives is a real battle. When you’re already exhausted and find it difficult to go outside, swinging between constipation and severe diarrhea is even more physically shattering and limiting—a real barrier to making the most of your last few months of life.
Looking at it in Romano’s terms, can we know what it would be like for the incompetent person who comes to inhabit my father’s body to die from pancreatic cancer and whether he would be content with this life? While my mother managed her pain herself, carefully keeping track of her dose and noticing the patterns of her pain as it gradually worsened, an incompetent person cannot do this. Depending on my father’s capacity to express his discomfort he risks being over-medicated or under-medicated some, if not most, of the time. The discomfort and indignities associated with the constipation-diarrhea see-saw are likely to be accompanied by feculence, confusion and anxiety for an infirm and incompetent person. My father’s body, unlike my mother’s, is quite large and still quite strong so if he becomes uncooperative, or even violent, he will be restrained for the safety of those caring for him.
This is my fear for my father, and a possible future to which Romano and others who oppose MAiD for people with advanced dementia are willing to condemn him.
While Romano appears to be concerned about protecting incompetent people who are not suffering from being unjustly killed, she appears to be indifferent to protecting incompetent people from being unjustly forced to live lives of abject suffering. Even if we accept Romano’s somewhat implausible claim that an advanced dementia patient is a complete stranger to their former self, the question remains as to who should be tasked with protecting their interests? Who will protect my father from a fate worse than death when he cannot protect himself? I think if his current self wishes to accept that responsibility, we should respect that wish.
Letitia Meynell is an Associate Professor in the Department of Philosophy at Dalhousie University.