The challenge of transformative experiences for advance directives: predicting a future with Alzheimer’s disease

Abstract

Some of the experiences that are possible in life are not relatable to others, nor can one learn about them in other ways, at least not in the sense of what it is like to have lived the experience. L.A. Paul calls these kinds of experiences transformative experiences. This article will incorporate Paul’s concept into an argument that undermines the moral authority of advance directives in situations where the instructions stated in the directive are in direct conflict with the contemporary interests of a patient who suffers from Alzheimer’s disease. Though the conclusion of this paper will be similar to many others in the literature, namely that advance directives should not in all cases be the final authority on how to respect a patient’s autonomy, this article will argue for this kind of a thesis in a unique way because it will emphasize the importance of that which no one can know. The argument contends that the lived experience of Alzheimer’s disease is a transformative experience, such that one cannot weigh the subjective value of what it is like to be a person with Alzheimer’s disease in the relevant way to properly assess the possible future interests and preferences when creating an advance directive. This article is published as part of a collection on self-knowledge in and outside of illness.