Impacts of an advance care planning intervention on close relationships

Abstract

Objectives: To examine how an advance care planning (ACP) intervention based on structured conversations impacts the relationship between patients with advanced cancer and their nominated Personal Representatives (PRs).

Methods: Within the ACTION research project, a qualitative study was carried out in 4 countries (Italy, United Kingdom, the Netherlands, and Slovenia) to explore the lived experience of engagement with the ACTION Respecting Choices^® ACP intervention from the perspectives of patients and their PRs. A phenomenological approach was undertaken.

Results: Our findings show that taking part in the ACTION ACP intervention provides a communicative space for patients and their PRs to share their understanding and concerns about the illness and its consequences. In some cases, this may strengthen relationships by realigning patients' and PRs' understanding and expectations and affirming their mutual commitment and support.

Significance of results: The most significant consequence of the ACP process in our study was the deepening of mutual understanding and relationship between some patients and PRs and the enhancement of their sense of mutuality and connectedness in the present. However, being a relational intervention, ACP may raise some challenging and distressing issues. The interpersonal dynamics of the discussion require skilled and careful professional facilitation.

Keywords: Advance care planning; Cancer; End-of-life care; Qualitative research; Relationship.