MAID for Dementia
This article first appeared in the Minden Times on March 1, 2023.
Sue Rodriguez, the Canadian right-to-die activist, diagnosed at age 41 with ALS (aka Lou Gehrig’s disease), famously asked a parliamentary committee considering medically assisted death in 1992, 24 years before legislation was eventually passed, two years before Sue ended her life illegally: “If I cannot give consent to my own death, whose body is this? Who owns my life?” Rodriguez had a reasonably foreseeable death, but she didn’t care to participate in the later stages of what she could see, and if she left it too late, she wouldn’t be able to communicate her wish to exit.
Sandra Martin, in her book, A Good Death, published in 2016, just before Canada’s passed Bill C-7, Medical Assistance In Dying (MAID), traces in detail the long and careful exploration of this many-faceted question, in an international context, that eventually led to legislation. The federal government is now struggling with the next layer of complexity, whether/how/under what circumstances the legislation applies to other than ‘reasonably forseeable’ death. The hot button issue seems to be whether intractable mental illness – depression is what is being talked about -- should be sufficient eligibility for MAID. I’m not sure if dementia is being considered a mental illness, but I think it is the very large elephant under the rug.
Amy Bloom, well-known American novelist, in her 2022 book, In Love: a memoir of love and loss, describes assisting her husband to achieve his adamant wish for medically assisted death when he is diagnosed with early onset dementia. It is not locally available, so they arrange to travel to Dignitas in Zurich, Switzerland, the long-time destination for those who seek – and can afford: Bloom’s well-to-do sister provides them with $30,000 to bankroll their journey, $20K for the procedure, $10K for the bucket list – medically assisted death. One of the challenges was neutralizing a diagnosis of depression because it would automatically disqualify him from the procedure. In his case, the diagnosis was an unwarranted, likely careless, perhaps desperate tick-box entry to justify a MRI, but it was the cause of much angst. And confusion: being unhappy, maybe even depressed, might be a reasonable response to being diagnosed with a terrible, terminal disease like dementia.
The thornier consideration, by its nature a cliff-hanger, was whether Bloom’s husband, Brian, would ‘pass’ two psychiatric examinations, conducted by different individuals, in the three days prior to the procedure, to give his ‘informed consent’: did his dementia-muddled mind fully comprehend the decision to end his life? Dementia on a day-to-day basis – heck, an hour-to-hour, situation-to-situation basis! -- is a variable disease. The person’s behaviour fluctuates depending on god knows what inputs. Unfamiliar and stressful circumstances – like, say, taking a plane to Zurich, hunkering down in a hotel room, being surveilled by a bunch of strange people – could cause a sharp dip in functioning: I can absolutely imagine the anxiety that Bloom was suffering as Brian was under the gun to perform.
Martin, in her book, interviews a Swiss doctor with decades of experience of providing medical assistance in dying, who says ‘she would help dementia patients die, but very early in their cognitive decline’. I know the problem the doc is trying to solve, but the dilemmas of Sue Rodriguez and Amy Bloom’s husband’s come to mind – how soon is too soon? How soon is too late? -- and I’m not sure the weight is on the right foot. The thorny question of advance directives has yet to be grasped.
The current debate around whether and how mental illness should be included in our MAID amendments is including discussion about access to appropriate treatment, even backing into the right to the social determinants of health. The ‘right’ to appropriate treatment is going to be a difficult one as it applies to dementia. Particularly since there is no treatment in sight, only management. Particularly when more than half the people diagnosed with dementia in Canada are relatively invisibly cared for at home (and that doesn’t count those who are not yet diagnosed but have the disease). Particularly if/when behaviour attributable to the illness are life-threatening to caregivers, or to co-residents in care facilities. Particularly when there seems to be a rise in diagnoses of early onset dementia when people are physically healthy and life expectancy may be very long.
The balance between the right to life and the right to death is a tricky one. We’ll talk.
