At the end of last semester, I conducted an online survey and series of interviews seeking to understand the perspectives of seniors on questions of dementia and decision-making. In particular, I asked people to consider what things about themselves they wouldn’t want to make decisions without: what kinds of changes to who you are and to mental capabilities, induced by dementia or otherwise, would you want your family to be allowed to step in and prevent you from making?
The answers, perhaps unsurprisingly, showed no real consensus. Some people cared only about their cognitive abilities at the time the decision was being made. Others saw their personality as a determinate set of values without some of which they would consider themselves a different person. Still others were concerned only about the safety of themselves and their loved ones.
If I was looking for any clear answers to what people care about (I was), then that seems to be a fool’s errand.
But maybe not so fast. There were patterns to the answers people gave. And in analyzing the explanations people gave for why they chose the things they did, it still seems to me that there may be something there, some deep thing that people are worried about when they think about dementia, some truth to the concern that their diseased future self might make decisions that they don’t want it to. Here is one theory: people think of their lives as stories, their selves as stories, and don’t want a future self inconsistent with that story to be able to deeply alter it.
This is a philosophically compelling idea. Professor Marya Schechtman, among others, argues that narrative is what people care about when they think about themselves. Ronald Dworkin applied an idea of narrative continuity to the issue of dementia and advance care directives. The question for me however (in addition to the question whether this theory is actually a unifying theme of my data, an issue I will here sidestep), is whether this idea of narrative is a determinate one such that a legal doctrine could incorporate it.
At first glance, it may seem impossible that it could. Indeed, Schechtman endorses a fairly weak conception of narrative that likely lacks the determinacy a legal doctrine would require. Dworkin, too, seems more or less agnostic to whether the organizing principles of a life that he would want enshrined in enforceable advance directives are narrative in any traditional way. And, of course, anthropologists and comparative literature scholars love to tell us that the forms of story to which we are accustomed are in whole or in part the peculiar and contingent result of Western history.
I think it might be possible.
In The Storytelling Animal, Jonathan Gottschall argues that narrative is a universally human way of understanding the world, that it presumably has its basis in the structure of our brains, and that it takes certain determinate forms across cultures. If this is true, it gives some hope to the aspiration of a determinate legal standard based on peoples’ narrative self-conceptions.
The standard would look something like this: as people develop dementia, and want to make any changes that are contested by family members, the court will ask whether the change is narrative. That is, if it’s the kind of change that follows in a narrative way from what was happening before. Is this the kind of change we would find plausible in a character? So, for example, if someone changes their mind about leaving their estate to all three daughters after two of them betray him, that would be a narrative. If the person changes their mind because they just woke up one morning that way, they should not be allowed to make the change.
Of course, the difficult question here is what I mean by narrative change. I am provisionally defining it as a change that is causally exogenous to the character of the person. That is, from the perspective of the character, was this change caused or merely happening? A change caused exogenously by the behavior of one’s family members (from the hypothetical perspective of that person), would be narrative, while one caused ultimately by the degradation of the person’s brain and nothing else would be endogenous to the character (and likely imperceptible), and therefore not narrative.
As I’m working through these questions, I would love feedback on and challenges on any of them. Is narrative a determinate concept, or is Gottschall wrong (or am I pushing his points further than they can bear)? If it is, then how do we go about determining what is and what isn’t narrative? Does my exogenous-endogenous distinction capture what we care about, or is there something more?
I think there is something here, some reality to the idea that what people care about is being a person defined as a narrative, and that that aspiration is one worthy of being reflected in law. But I’m still working out the details of what that would look like, and I would love input to get a sense of whether I’m on the right track.