Dementia and MAiD: A hard needle to thread

Sixty years into his marriage, Dr. George Szasz, had to watch his wife disappear into dementia. A retired family physician who’d practiced in Vancouver, Dr. Szasz wrote about her illness in an article published in the September, 2023 issue of the British Columbia Medical Journal (BCMJ). “The four horsemen of dementia—amnesia, aphasia, apraxia, and agnosia—grabbed hold of my vital, healthy partner. Over a 9-year period, she was devastated and destroyed mentally and physically . . . I could no longer leave her at home alone,” he wrote. “During those years she gradually lost her speech and comprehension abilities and no longer recognized who was who. When touched, she would reflexively hit back; she screamed when being washed or bathed; she became incontinent . . .. At night she became panicky; she yelled out, punched the air and often hit herself.” Dr. Szasz called for a solution.“We must find a way to provide persons suffering from dementia the option to escape this inhumane and intractable condition with medical assistance.” Dr. Szasz emphasized in an email to the Medial Post that he doesn’t question the important safeguards that are fundamental in Canada’s current Medical Assistance in Death (MAiD) legislation. He just wishes it weren’t so difficult for people facing dementia to meet the criteria. Legally eligible, but it’s a reach Bill C-14, passed in May, 2016, clearly stipulates that a person receiving MAiD must be competent—at the specific time of their scheduled provision—and must give their informed consent before the euthanasia can proceed. One evident question is how that could be possible for someone who has advanced dementia? More recently, Bill C-7, passed in March, 2021, allows people who have fully met the qualifying criteria for MAiD (and chosen a date for its provision) to apply for a “waiver of final consent.” That can work, for people who get their dementia diagnosis early enough and who, with their MAiD assessor, have established that they have a “grievous and irremediable medical condition,” as required by track one of Canada’s MAID legislation. Still, the timing can be tricky. Dr. Stefanie Green is a Victoria, B.C., family physician whose practice now focuses on MAiD. “To be clear, patients with dementia have never been excluded from trying to access MAiD,” she said in an interview with the Medical Post. “But they need to have both an advanced state of decline and capacity at the same time, and for many patients that seems an impossibility.” She talked about the difficult “Ten Minutes to Midnight” moments she navigates as a MAiD assessor, diagnosing the potentially brief window of time her dementia patients have when they are still competent, but when their symptoms also seem to be escalating. “They’ve been diagnosed (and fully assessed), have symptoms and they're already starting to struggle,” she said. “They might say to me they want an advanced request. But I can't offer them that because it doesn't exist in Canada. So instead, I say to them, ‘Look, why don't we meet regularly, and I'll get to know you, and what you want, and why you want it, and what your values are. I’ll document how your disease declines . . . when you can no longer dress yourself, can no longer use the telephone, can no longer ride in the elevator .And you’re going to get to a point where you lose the capacity to make this decision. But our current law says only if you still have capacity, you can choose to have MAiD. It says you need to be in an advanced state of decline already. So when is that moment?” So, what if the patient does set a date for MAiD, and that date arrives, only for the patient to be both incompetent, but also seems happy and adjusted to their life? Does the family go ahead with the MAiD, as specified by the patient previously? Do they change the date? Postpone? A waiver of consent can put a lot of pressure on the family members and assessors who have to consent on the dementia patient’s behalf, Dr. Green acknowledged. The same agonizing dilemma might apply to any future form advance requests might take. And they are being considered. In his BCMJ article, Dr. Szasz referred to the second report of Canada’s Special Joint Committee on Medical Assistance in Dying, released in February 2023, which did recommend that the Criminal Code should be amended to allow for advance requests following a diagnosis of a serious and incurable medical condition, disease, or disorder leading to incapacity. That would not be the same as a detailed advance directive (also called a living will)—though the wording sounds interchangeable. Healthy, active people could not write advance requests stating that if they reach a defined degree of dementia they would want to receive MAiD. How would future advance requests functionally improve on the waiver of consent that already exists, if the MAiD applicants in both cases have to already have—in this case, dementia—to qualify? Would advance requests make the legal MAiD process any easier for people facing dementia? These questions remain unanswered for now. Perhaps applicants would be able to qualify at an earlier stage of their disease, easing the currently tight window. The first place to watch will be in Quebec, which actually passed advance request legislation—Bill 11 this past June. It will take time for the fine details of the legislation to be worked out and implemented, but historically with MAiD in Canada, federal legislation has come on the heels of legal decisions first made in Quebec.

Dementia and MAiD: A hard needle to thread

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