Patient and family caregiver perspectives of Advance Care Planning: qualitative findings from the ACTION cluster randomised controlled trial of an adapted respecting choices intervention

K. Pollock*, F. Bulli, G. Caswell, H. Kodba-Čeh, U. Lunder, G. Miccinesi, J. Seymour, A. Toccafondi, J. J.M. van Delden, M. Zwakman, J. Rietjens, A. van der Heide, M. Kars

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

Abstract

Advance Care Planning (ACP) is widely regarded as a component of good end-of-life care. However, findings from a qualitative international study of patient and family caregiver attitudes and preferences regarding ACP highlight participants’ ambivalence towards confronting the future and the factors underlying their motivation to accept or defer anticipatory planning. They show how ACP impacts on, and can be determined by, relationships between patients and their family caregivers. Although some patients may welcome the chance to engage in ACP a tendency towards either therapeutic optimism or fatalism can limit its perceived appeal or benefit. The focus on individual autonomy as an ethical principle underlying ACP does not resonate with real world settings. Many patients naturally orient to share responsibility and decision making within the network of significant others in which they are embedded, rather than exert unfettered freedom of ‘choice’.

Original languageEnglish
Pages (from-to)69-89
Number of pages21
JournalMortality
Volume29
Issue number1
DOIs
Publication statusPublished - 2024

Keywords

  • Advance Care Planning
  • cancer
  • end of life care
  • qualitative research
  • Respecting choices

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