Transformative experience and the principle of informed consent in medicine

Egerton, Karl; Capitelli-McMahon, Helen

Abstract

This paper explores how transformative experience generates decision-making problems of particular seriousness in medical settings. Potentially transformative experiences are especially likely to be encountered in medicine, and the associated decisions are confronted jointly by patients and clinicians in the context of an imbalance of power and expertise. However in such scenarios the principle of informed consent, which plays a central role in guiding clinicians, is unequal to the task. We detail how the principle’s assumptions about autonomy, rationality and information handle transformative experiences poorly, appealing to several difficult cases for medical decision-making to illustrate the resulting problem, and we consider how the existing literature on complications with consent fails to offer a resolution. We argue that recognition of the problem has a role to play in achieving a more effective response to transformative decisions. In Sect. 1 we introduce several representative cases of challenging patient decision-making that clinicians might face. In Sect. 2 we detail how transformative experience has been analysed in the recent literature, before outlining in Sect. 3 the theoretical basis of the principle of informed consent, which plays a central role in how clinicians are expected to support decision-making. In Sect. 4, having laid the groundwork for a clear description, we return to the cases given in Sect. 1 to confirm how their transformative nature presents a problem: either clinicians treat the decisions faced by these patients as ‘normal’, encouraging them to focus on information provision that patients may be unable to act on, or they treat them as transformative, in which case they lack the resources to recognise whether they are helping patients make (subjectively) good decisions. In Sect. 5 we argue that the existing literature does not offer any escape from this problem. We close in Sect. 6 by noting the significant impact that appreciating the problem of transformative experience could have on supporting transformative decisions in medicine and briefly suggesting how we might aim to develop new approaches to dealing with these.

• Journal Article Type: Article
• Acceptance Date: Jun 29, 2023
• Online Publication Date: Aug 18, 2023
• Publication Date: Aug 18, 2023
• Deposit Date: Aug 23, 2023
• Publicly Available Date: Aug 23, 2023
• Journal: Synthese
• Print ISSN: 0039-7857
• Electronic ISSN: 1573-0964
• Publisher: Springer Science and Business Media LLC
• Peer Reviewed: Peer Reviewed
• Volume: 202
• Issue: 3
• Article Number: 65
• DOI: https://doi.org/10.1007/s11229-023-04258-4
• Keywords: Informed consent, Rationality, Transformative experience, Medical ethics, Decision-making capacity, Autonomy
• Public URL: https://nottingham-repository.worktribe.com/output/24569490
• Publisher URL: https://link.springer.com/article/10.1007/s11229-023-04258-4
• Additional Information: Received: 2 January 2023; Accepted: 29 June 2023; First Online: 18 August 2023; : ; : The authors have no conflicts of interest to report.