Sharing End-of-Life Care Preferences with Family Members: Who Has the Discussion and Who Does Not

Abstract

Background: Research suggests that greater engagement in family discussions concerning end-of-life (EOL) care preferences could improve advance care planning and EOL outcomes. However, a substantial number of people have not had such discussions.

Objective: The study's objective was to understand attitudes and experiences influencing engagement in discussions of EOL care preferences with family members, including the role of healthcare providers in such discussions.

Methods: We conducted focus group interviews with 36 non-Hispanic White, African American, and Hispanic community-dwelling participants. Participants were divided among groups to explore differences between those who had or had not engaged in EOL care discussions. Atlas.ti version 7 was used to analyze data employing an open-coding method.

Results: Participants' mean age was 70 (range: 58-87); three-fourths were female (n = 27). Twenty were white, non-Hispanic; 10 were African American; and 6 were Hispanic. Four themes emerged from the data, (1) being proactive or passive/reactive; (2) perceiving discussion of death as normal or abnormal; (3) response to family resistance/disconnection; and (4) knowledge acquired. A fifth theme, the role of healthcare providers in family EOL care discussions, resulted from facilitators' questions. Theme examination led to identification of a central category, decision-making.

Conclusions: It is important to understand the differing experiences and attitudes of those who do or do not engage in EOL discussions. Research is needed on healthcare practitioners' use of decision-making tools to help patients discuss their EOL care preferences with family and others, the goal of which is to provide care consistent with patients' goals.

Keywords: advance directives; communication; family issues.