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New Evidence on Dementia, Identity, and Decision-Making

By James Toomey

In my paper Narrative Capacity (recently published in the North Carolina Law Review), I argue, among other things, that the legal system’s recognition of personal decision-making should be a function of personal identity, not (as it currently is) of an individual’s momentary cognitive functioning.

One of the arguments on this score is as follows. The background purpose of the private law is to facilitate flourishing through private ordering. For this reason, the basic private law framework should broadly correspond to people’s intuitions and lay understandings. But, as it turns out, people do not generally think that cognitive functioning alone is what matters to whether the law ought to recognize their decision-making. Instead, it seems that what people care about is whether they are, in some meaningful sense, still themselves at the time of a future decision.

In the paper, for support of this proposition, I cite myself — the results of a relatively small study I published here and here that revealed that for study participants, personal identity rather than cognitive functioning was the primary way in which they thought about their legal entitlement to make decisions. But this finding has just received additional empirical support, in the form of a larger experimental study (available here as a preprint) by Brian Earp, Ivar Hannikainen, Samuel Dale and Stephen Latham.

The study offered participants a prompt drawn from classical debates in bioethics on the ethical status of advance directives — documents composed while at full cognitive abilities that direct certain medical treatment in the event that the author later loses mental capacity. In the prompt, a character named Robin had filled out an advance directive stating that she did not want medical treatment if she were to lose capacity (or, in the “control condition” participants were given more general information about her lifelong values). However, after developing dementia and losing capacity, Robin is described as apparently happy and contended with her life. She develops a disease that will be fatal if untreated, but which is easily treatable. Participants were asked two relevant questions — (1) is Robin with dementia still her true self? And (2) should she be treated?

The headline result (vindicating the experimental model designed to test advance directive efficacy) was that it indeed made a difference for participants whether Robin had completed an advance directive in assessing whether she was still her true self, and whether she should be treated. But for our purposes here, more relevant was a subsidiary finding — that there was a strong correlation between believing that Robin was still her true self and that she should be treated. And this correlation tracked the finding in my earlier study — participants who believed that she was still her true self believed in general that she should be treated, whereas participants who believed that she was not were divided, but less likely to say so, deferring to the advance directive more often.

In other words, in this study population too — larger and in a different context of decision-making (health care as opposed to private law) — participants found the variable most germane to whether others have an obligation to respect an individual’s decision-making the continuity of their personal identity, of their true self. If they were still the same person they always had been (in the morally meaningful sense; if they were still their true selves, as the authors of the new study put it), then we ought to recognize their updated decision-making. We might presume that they have simply changed their mind. In contrast, if participants concluded that Robin was no longer, in the ethically meaningful sense, the person she had been previously, participants might think we must move beyond our default posture of recognizing personal decision-making, to some other system, perhaps governed by pre-existing advance directives. In short, the study offers further evidence that in disregarding identity, the private law’s test for recognizing personal decision-making is out of step with general intuitions.

Of course, there are many more questions to be answered. For instance, these two studies focused on different kinds of decisions (private law vs. medical decisions), and different perspectives (deciding for one’s hypothetical future self or deciding for Robin, a third-party). Future research can hone in on whether these distinctions make a difference to people’s thinking. Indeed, my study found that there was some variation in people’s thinking regarding different kinds of private law decisions, with participants wanting to retain the prerogative to make personal decisions they considered more intimate longer into the course of dementia. But at any rate, the study is powerful additional evidence bolstering an essential argument in Narrative Capacity — the current legal doctrine of capacity does not reflect general intuitions.

James Toomey

James Toomey is an Assistant Professor of Law at the Elisabeth Haub School of Law at Pace University. Prior to joining the faculty at Pace, James was a Climenko Fellow & Lecturer on Law at Harvard Law School. His scholarly work has appeared in the Virginia Law Review, the North Carolina Law Review, the Harvard Journal on Legislation and more.

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