Proactive end-of-life conversations in residential care homes: a qualitative interview study exploring residents' and family members' experiences.

Abstract

Background: Due to population aging, residential care homes are increasingly providing end-of-life care for residents with multiple chronic illnesses and cognitive decline. Proactive end-of-life communication, a component of Advance Care Planning, has been suggested as a means of providing high-quality care aligned with residents' preferences and supporting involved family members. Despite growing knowledge about the benefits of early communication concerning end-of-life care preferences, such conversations are still rare in the context of residential care homes, and little is known about how they are perceived by residents and family members. The aim of this study is to explore the outcomes experienced by residents and family members who have participated in proactive end-of-life conversations in residential care homes.

Methods: This qualitative study is embedded within a participatory action research project implementing proactive end-of-life conversations in five Swedish residential care homes, using a conversation tool. In this study we performed 18 interviews with eleven residents and eight family members after they had participated in staff initiated proactive end-of-life conversations. Data were analyzed using interpretive description.

Results: Residents and family members experienced several outcomes of proactive end-of-life conversations presented in three closely interconnected themes: (1) Enabling open communication, (2) Creating space for knowledge exchange, and (3) Contributing to feelings of confidence and relationship building.

Conclusions: Proactive end-of-life conversations generated several beneficial outcomes for residents and family members, including those with cognitive decline. The study demonstrated that the conversations may strengthen person-centered care and family support in this context. Based on these findings, proactive end-of-life conversations have the potential for use by residential care home staff.