Giving room for the existential response to serious illness: experiences with advance care planning among home-dwelling older persons admitted to acute geriatric care

Purpose Advance care planning (ACP) enables individuals to elicit values and preferences regarding medical treatment and care, and to record and review them before loss of capacity. In Norway as in most European countries, ACP is rarely performed. This is worrisome given the benefits of ACP, and the lack of research and understanding of the patient’s perspective, particularly in contexts where ACP is new. This paper is the first to explore how the initiation of ACP is experienced by older persons living at home with frailty who are encountering ACP for the first time, using a concept of ACP that extends beyond end-of-life decision-making. Methods This qualitative study is part of a cluster-randomized controlled trial in which home-dwelling patients admitted to acute geriatric units were invited to participate in the initiation of ACP with their next of kin. We interviewed ten of these patients about their experiences and conducted a reflexive thematic analysis. Results The patients reported that the initiation of ACP fostered trust and confidence, promoted emancipation and insight, enabled them to remain at home longer, opened up space for emotional and existential issues as precursors to decision-making, and promoted a more direct and honest connection with the physician. Conclusion The initiation of ACP can be integrated into routine geriatric care and may provide important benefits for patients by filling gaps and adding new dimensions to usual care. ACP is an underused tool in communication and decisions concerning severe illness that more patients could benefit from. ClinicalTrials.gov Identifier NTCT05681585. Registered 03.01.23.