Undermining autonomy and consent: the transformative experience of disease

Abstract

Disease radically changes the life of many people and satisfies formal criteria for being a transformative experience. According to the influential philosophy of Paul, transformative experiences undermine traditional criteria for rational decision-making. Thus, the transformative experience of disease can challenge basic principles and rules in medical ethics, such as patient autonomy and informed consent. This article applies Paul’s theory of transformative experience and its expansion by Carel and Kidd to investigate the implications for medical ethics. It leads to the very uncomfortable conclusion that disease involves transformative experiences in ways that can reduce people’s rational decision-making ability and undermine the basic principle of respect for autonomy and the moral rule of informed consent. While such cases are limited, they are crucial for medical ethics and health policy and deserve more attention and further scrutiny.

Transformative Experience

“…Chan, 2023). 9 For example, it has already been applied in religious studies (e.g., Blanchard & Paul, 2021;Chan, 2019;De Cruz, 2018), education studies (e.g., Paul & Quiggin, 2020;Yacek, 2020;Yacek & Gary, 2020), psychology (e.g., Brouwer & Carhart-Harris, 2021;Forstmann et al, 2020;Yudkin et al, 2022), medical ethics (e.g., Egerton & Capitelli-McMahon, 2023;Hofmann, 2023;Jacobs, 2023;Letheby & Mattu, 2022;McQueen, 2017;Peterson et al, 2022;Walsh, 2020), and other areas of philosophy besides decision theory (e.g., Akhlaghi, 2023;Aumann, 2022;Carel et al, 2016;Carel & Kidd, 2020). Since it is not possible to cover all of these topics, I will focus on work that applies the concept of transformative experiences to illness, medical treatment, and the ethical issues involved.…”

“…Beauchamp, 2010). This raises the question of whether the potentially transformative nature of an intervention precludes informed consent (Egerton & Capitelli-McMahon, 2023;Hofmann, 2023).…”

“…At this, the experience is almost always non‐voluntary (i.e., it is not the result of our actions) or involuntary (i.e., we have not reflected on how our actions promote illness). There are a few cases where illness is a voluntary choice (e.g., some medical treatments can result in illness, see Hofmann, 2023). Second, the transformative nature of illness makes it epistemically inaccessible.…”