Tom Koch is an author and medical ethicist at the University of British Columbia. His most recent book is Ethics in Everyday Places: Mapping Moral Stress, Distress, and Injury.
The Parliamentary Committee reviewing Canada’s current medical assistance in dying (MAID) laws recently recommended the system be broadened to allow people with incurable illnesses such as dementia to make advance requests for euthanasia. The idea is that people with degenerative illnesses could control their own fate and escape suffering after the point when they can legally give consent. However, as someone who has faced issues of dementia and other fragilities for almost 30 years – first as a carer to a parent, then as a consultant, researcher and writer – I worry that in the push for advance directives, lawmakers and advocates are embracing the fear of a potential future that is impossible to truly understand before it arrives.
People facing dementia, and indeed any limiting chronic complaint, worry that the life they lived is ending and the life they might live will be insufficient. The pride we all take in independence is threatened by a new reality, and it’s common for folks to say, “I don’t want to live that way.” Most find, however, that the life still to be lived is one worth living, if different from the one they knew.
I came to understand this first in the 1980s while caring for my father. As his dementia set in, a condition he had always feared, there were moments of beauty and shared intimacy that neither of us had anticipated. Stripped of the ingrained roles of our relationship, I saw the essence of the man my mother married, the person at the core of the father he had been. And, of course, he came to know me in a way that was previously impossible.
I told our story in Mirrored Lives: Aging Children and Elderly Parents. After its publication, I received positive letters from readers for 20 years. Many wanted me to tell their story. Those narratives, published in A Place in Time, described both the richness my narrators found in the carer’s role and the way in which fragile seniors adjusted to lives limited by dementia and neurodegenerative diseases. A final book, Age Speaks for Itself, was based on interviews with fragile seniors themselves.
The message from my past subjects was that none could have anticipated in health the life they learned to live in fragility. An advanced directive written in normalcy would have denied the life experiences of both caregiver and receiver. And this is true of a range of neurodegenerative conditions. Jill Bolte Taylor, a neuroscientist, wrote movingly in My Stroke of Insight about the interior life she experienced after a stroke that left her at best minimally conscious and certainly past any point of consent. Had she signed an advance directive she likely would have been medically terminated. Without MAID, and with a great deal of care and help, she returned to tell the tale.
For studies published in Social Science & Medicine, I surveyed people with a range of limits, including quadriplegia, about what they had known of a disabled life before their injury or diagnosis. All said they had no real prior knowledge, only a fear of future limits. Many had thought of suicide or assisted dying, but after around two years, most found to their surprise that even with extreme limits, life was as fulfilling as that lived in health. Just different.
A 2022 Health Canada report documenting the reasons people request medical termination included fear of a loss of autonomy. But the studies I’ve carried out, and the cases in which I’ve been engaged, demonstrate that cognitive, physical and sensory limits can be surmounted when we accept that total autonomy is a myth. And in fragility, that fact becomes more evident once we learn to accept help from another – help that loved ones are often more than willing to provide.
Another fear reported in the Health Canada survey was that of being a burden to loved ones. But in that sense, MAID is an easy answer for a lack of adequate home and institutional care. Roger Foley, who has a neurodegenerative disease, alleges the care he received from appointed health agency workers at his home was so inadequate that it was the cause of repeated hospital admissions. For more than three years, he has refused to leave his hospital bed in London, Ont., until adequate home care is assured. His case remains mired, in a series of delays, before the Ontario Supreme Court.
Approving MAID as an advanced request is not a kindness for the person in distress. It only gives credence to a fear of the future yet experienced. The question now is whether we, as a country, embrace that fear as a rationale for early death, or focus instead on the richness that is still possible, assuring the necessities of life for those affected by dementia and other limiting conditions.