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. Pollocka*, F. Bulli, G. Caswel, H. Kodba-Ceh, U. Lunder, G. Miccinesi, J. Seymour, A. Toccafondi, J. J. M. van Delden, M. Zwakman, J. Rietjens, A. van der Heide

*Corresponding author for this work

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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
Number of pages21
JournalMortality
DOIs
Publication statusE-pub ahead of print - 23 Aug 2022

Bibliographical note

Funding
This work was supported by the European Union’s Seventh Framework Programme FP7/2007-2013
under grant agreement n° 602541; European Union’s Seventh Framework Programme FP7/2007-
2013 [602541]

© 2022 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group

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