Deaths and their stories

I was going to write something about Shakespeare, but the Canadian Council of Academies’ report on medical assistance in dying will probably be tabled in Parliament this week. I spent about 18 months on the panel that advised the CCA staff on the writing of this report, and I’m still processing that experience which was, to say the very least, mixed. For today, I want to reflect on how that participation reinforced my sense that people make so-called “ethics” decisions based on what I’ve called their narrative habitus. By that I mean stories that have gained a gate-keeper function in our consciousness. Crucially, these stories mediate which future stories we take seriously–maybe which stories we’re able to hear at all, as opposed to stories that just go by us. And, our narrative habitus mediates how we evaluate what happens in stories we hear: what we think the point of the story is and whether we find that exemplary or cautionary, right or wrong.

As I participated in the MAID panel, I thought a lot about when I heard that my Great-uncle Morton, who had the particular American southern nickname “Mote”, was dying. It’s a memory story, as all stories are, but some especially. In my memory, I remember distinctly that I was playing in my room, constructing the elaborate arrangements of toy soldiers that fascinated me as a child (which shows how not-predictive childhood activities can be of adult life). My mother, in the bedroom across the hallway, got a phone call, which I could tell was from my grandmother. I could also tell something serious was happening. Listening to my mother’s end of that call was one of my first experiences of critical illness.

Uncle Mote was dying of colon cancer, and he was refusing “the operation”. That I could comprehend this euphemism, on which my mother did not offer to elaborate, reflects what’s wrong with my memory. I know about when my great uncle died, and I was way too old to have been playing with toy soldiers. So my memory is one sort of truth of my experience, but it’s also wrong factually. So it goes, as Vonnegut used to write. The evaluation part of the memory is that nobody was questioning my great-uncle’s refusal. A questionable decision received unquestioning, immediate assent. I got a strong message that it was all right to die, even if medical treatment might delay that. What I now call quality of life came first. I remember (a phrase to be careful of) my mother explaining to me that “after the life he’s led”, my great-uncle didn’t want to live with the effects of “the operation”. What kind of life that was, I was left to know without asking. He died within a year, quickly and so far as I ever knew quietly, at home. Now, I might suspect he had assistance.

That’s how, I think, we learn moral life. Uncle Mote’s story reverberates when I engage with issues of dying, refusal of treatment, and assistance in dying. The story–reinforced by like-stories of other family deaths–gives me, or maybe it represents, my predisposition that people should have a presumption of full autonomy about when they die. It’s all right to die, the story tells me; dying can be a good choice. My story sets in place a very different habitus than, for example, that of psychiatric colleagues on the MAID panel, whose crucial story, repeated regularly, was about an ideal-typical patient who wanted to die, then was treated, and at some later time expressed gratitude for being alive. That’s a story (technically a narrative, given its generality) I can hear and even believe, but it’s not compelling for me. For my colleagues, it was the compelling story. Different stories, different narrative habitus, and different ethical predispositions. 

I don’t understand myself or anyone else to be a prisoner of ill-remembered childhood stories. Stories are constantly being revised and reframed, and they can be displaced. But full displacement takes work; the displacing story has to assert itself with particular force, or the old story has to be specifically discredited by events that demand a different understanding. Nobody on the MAID panel (six two-day meetings, plus tele-conferences) told me a story that displaced my memory of Uncle Mote’s choice about dying.

At the most fundamental level, I just cannot see what’s wrong with actions–in this instance decisions about dying–that others find simply wrong. I use the perilous word simply here because the finding of right and wrongness is a sort of bedrock; the wrongness is palpable for them, as much as the rightness is palpable for me. Between our respective narrative habituses, we can hear each other, but we’ll never understand each other. Gadamer’s fusion of horizons will never happen; no “evidence” can effect it, because what counts as evidence is itself mediated by some sort of habitus.

The MAID work isn’t finished for me, in several respects. And the story of Uncle Mote’s dying will affect how I engage in that work.

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