Personal transformation and advance directives: an experimental bioethics approach

Some people with dementia are transformed by the disease, to the point that family members may describe them as a “different person.” These transformations may be negative or positive. What factors affect the judgements of ordinary people about whether an advance directive (AD) should be followed in such cases? We conducted three studies to test the influence of (1) positive versus negative transformation and (2) “treat” versus “withhold treatment” AD on the judgements of US participants (n = 1676) as to whether the AD should be followed and the extent to which the late-stage dementia patient had become a different person. We found that participants generally endorsed following the AD, irrespective of condition, but much less so when the patient had a positive transformation. Participants also favored “treat” over “withhold treatment” ADs. Unexpectedly, we found that AD type affected “different person” judgments: participants registered significantly weaker agreement with the proposition that the patient had become a different person when the AD instructed treatment. We discuss these results in the context of Walsh’s (2020) newly proposed normative model for AD decision-making.