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Undermining autonomy and consent: the transformative experience of disease
  1. Bjørn Hofmann1,2
  1. 1Centre for Medical Ethics, University of Oslo Faculty of Medicine, Oslo, Norway
  2. 2Institute for the Health Sciences, Norwegian University of Science and Technology Faculty of Medicine and Health Sciences, Gjøvik, Norway
  1. Correspondence to Dr Bjørn Hofmann, Centre for Medical Ethics, University of Oslo Faculty of Medicine, Oslo 0316, Norway; b.m.hofmann{at}medisin.uio.no

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.

  • autonomy
  • personal autonomy
  • informed consent
  • ethics

Data availability statement

All data relevant to the study are included in the article. All data are available in the manuscript.

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Data availability statement

All data relevant to the study are included in the article. All data are available in the manuscript.

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Footnotes

  • Contributors BH is the only author and the gurantor of this manuscript, who accepts full responsibility for the work of the study, had access to the data/content, and controlled the decision to publish.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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