Experiences with and outcomes of Advance Care Planning in bereaved relatives of frail older patients: a mixed methods study

Abstract

Background: Advance Care Planning (ACP) may prepare relatives of frail older patients for future decision-making.

Objective: to investigate (1) how bereaved relatives of frail older patients experience ACP conversations and (2) whether ACP has an effect on relatives' preparation for decision-making and on their levels of anxiety and depression.

Design: cluster randomised controlled trial.

Setting: residential care homes in the Netherlands and community setting.

Subjects: bereaved relatives of care home residents and community-dwelling frail older patients.

Methods: we randomised 16 residential care homes to either the intervention group, where patient-participants were offered facilitated ACP, or the control group (n = 201), where they received 'care as usual'. If patient-participants died, we approached relatives for an interview. We asked relatives who had attended ACP conversations for their experience with ACP (open-ended questions). Furthermore, we compared relatives' preparation levels for decision-making and levels of anxiety and depression (HADS) between groups. This trial was registered (NTR4454).

Results: we conducted interviews with 39/51 (76%) bereaved relatives (intervention group: n = 20, control group: n = 19). Relatives appreciated the ACP conversations. A few considered ACP redundant since they were already aware of the patients' preferences. Nine of 10 relatives in the intervention group felt adequately prepared for decision-making as compared to 5 of 11 relatives in the control group (P = 0.03). Relatives' levels of anxiety and depression did not differ significantly between groups.

Conclusions: in our study, bereaved relatives of frail older patients appreciated ACP. ACP positively affected preparedness for decision-making. It did not significantly affect levels of anxiety or depression.

Keywords: Advance Care Planning; Aged; Family; Frailty; Older people; Randomised controlled trial.