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

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

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’.

Citation

Pollock, K., Bulli, F., Caswell, G., Kodba-Čeh, H., Lunder, U., Miccinesi, G., …Kars, M. (2022). Patient and family caregiver perspectives of Advance Care Planning: qualitative findings from the ACTION cluster randomised controlled trial of an adapted respecting choices intervention. Mortality, https://doi.org/10.1080/13576275.2022.2107424

• Journal Article Type: Article
• Acceptance Date: May 15, 2022
• Online Publication Date: Aug 23, 2022
• Publication Date: Aug 23, 2022
• Deposit Date: Nov 30, 2022
• Publicly Available Date: Nov 30, 2022
• Journal: Mortality
• Print ISSN: 1357-6275
• Electronic ISSN: 1469-9885
• Publisher: Routledge
• Peer Reviewed: Peer Reviewed
• DOI: https://doi.org/10.1080/13576275.2022.2107424
• Public URL: https://nottingham-repository.worktribe.com/output/10907191
• Publisher URL: https://www.tandfonline.com/doi/full/10.1080/13576275.2022.2107424