Raising awareness and preparation for what may come: next of kin experiences of advance care planning with frail, home-dwelling older adults in geriatric units

TL;DR

This study explores how involving family members in advance care planning helps prepare them for future medical decisions for frail elderly patients.

Contribution

The study provides new insights into next of kin experiences with advance care planning in Norwegian geriatric units.

Findings

Advance care planning increases next of kin's sense of security through open communication and preparation.

Next of kin play a crucial role in supporting patient autonomy during hospital stays.

Documentation and collaboration across service levels are seen as important for effective advance care planning.

Abstract

Acutely ill and frail older adults and their next of kin are often poorly involved in planning of decisions regarding treatment and care during the final phase of life. Although advance care planning is a well-documented tool to strengthen patient autonomy and involve next of kin, it remains underused in hospital settings. We present a qualitative sub-study embedded in a cluster-randomized controlled trial, whose purpose was to implement advance care planning in Norwegian geriatric units. Frail, home dwelling older adults acutely admitted to geriatric hospital units were invited to participate in advance care planning together with their next of kin. The aim of this study was to explore next of kin experiences of advance care planning.

The study has a qualitative design, based on individual semi-structured interviews with 13 next of kin. A purposive sampling was used to select next of kin who had recently participated in advance care planning from five geriatric units in the intervention arm. The analysis was conducted using reflexive thematic analysis by Braun and Clarke.

Four themes were developed from the analysis; (1) Being informed and involved through open communication; (2) Getting prepared for what’s to come; (3) The importance of the next of kin role in providing support and facilitation; (4) The need for documentation and collaboration across service levels.

Advance care planning appears to provide a sense of security among next of kin by addressing their information needs regarding the patient’s prognosis, encouraging discussions on possible courses of action, and clarifying the patient’s end-of-life preferences. Next of kin played a crucial role in supporting the patient’s autonomy, and they considered the hospital stay as an ideal time for advance care planning. Increased awareness of their role as next of kin seems to enhance agreement and trust when confronting challenging situations and existential questions.

ClinicalTrials.gov Identifier NTCT05681585. Registered 03.01.23.

The online version contains supplementary material available at 10.1186/s12913-025-12609-9.