Illness as transformative experience: Implications of philosophy for advance care planning

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Advance care planning has been shown to improve patient outcomes and is recommended as part of routine care for people with a life-limiting illness. Nevertheless, developing an advance care plan can be complex and challenging for both patients and family members, and the clinicians who support them. One complexity is that illness and its treatments often cannot be deeply understood without lived experience. In this paper, we explore this idea, highlighting how lived experience can bring about unpredictable changes in an individual’s values and preferences. We examine the implications of such ‘transformative experiences’ for advance care planning, using the hypothetical case study of Jean, an older person with advanced kidney disease. Finally, we consider consequences for clinical practice and how an understanding of transformative experience might enhance current approaches to advance care planning.
Original languageEnglish
Number of pages14
JournalJournal of Pain and Symptom Management
Early online date1 Mar 2019
Publication statusPublished - 1 Mar 2019


  • Advance care planning
  • Phenomenology
  • Illness experience
  • Shared decision-making
  • Transformative experience
  • Philosophy

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