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

Abstract

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. 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. 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. 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. 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.