Frail community-dwelling older persons' advance care planning and end-of-life wishes and preferences: A qualitative interview study.

OBJECTIVES

Advance care planning (ACP), including end-of-life (EOL) conversations, helps frail older persons articulate goals and preferences for future treatments and care, ultimately enhancing quality of life. Nevertheless, a substantial gap exists between the many who wish to engage in such conversations and the minority who currently do so. To support earlier and broader engagement, we explored frail community-dwelling older persons' perspectives and attitudes regarding ACP and EOL discussions.

METHODS

We conducted a qualitative, purposively sampled, interview study of frail community-dwelling older persons (N = 16), identified from Dutch general practices. We analyzed the transcripts using reflexive thematic analysis.

RESULTS

We developed 5 themes regarding ACP and EOL conversations: (1) Personal identity as the foundation for ACP and EOL decision-making: personal values strongly shaped EOL preferences and decision-making; (2) external factors - including lived experiences, the social environment, and information channels - influenced EOL perspectives; (3) attitudes and motivations shaped engagement with ACP and EOL conversations, ranging from active engagement to reluctance; (4) organization and conditions of ACP and EOL conversations: the content of conversations varied across conversation partners; and (5) expectations regarding involvement of others in ACP, including EOL conversations: participants expressed a need for proximity to family, close friends, and healthcare professionals and for these others to be involved and take responsibility in supporting decision-making.

SIGNIFICANCE OF

RESULTS

When asked about ACP, participants focused predominantly on preferences and expectations regarding EOL care and the period surrounding death. These reflections, grounded in personal values and identity, were most often shared with family and close friends and less frequently with healthcare professionals. These findings highlight the central role of informal networks in ACP communication, suggesting that healthcare professionals should actively involve these networks in ACP discussions and decision-making. Furthermore, ACP conversations may benefit from starting from persons' underlying values and their priorities in life.