Dilemmas Adult Children Face in Discussing End-of-Life Care Preferences with Their Parents

This study explored the perceived goals, barriers, and strategies that characterize family interactions about advance care planning (ACP), which is instrumental in guiding end-of-life care. Discussions within the family context can significantly improve end-of-life decision making but are complicated, partly because participants are attempting to achieve multiple, and often competing, goals. Participants (n = 75) responded to a hypothetical scenario about a conversation with a parent about ACP by completing an anonymous online survey. Respondents described their conversational goals, anticipated barriers, and strategies they thought would be helpful. Thematic data analysis identified four dilemmas participants faced while attempting to achieve multiple, conflicting goals: (1) the desire to make the parent feel wanted while discussing them not being around; (2) the need to be gentle but still direct; (3) the practical necessity of designating one decision-maker without provoking family conflict; and (4) the desire to lessen the burden on the designated decision-maker by providing necessary information while still placing them in a decision-making role. Participants reported using several strategies to manage these complex dilemmas. These findings provide support for the utility of Goldsmith's normative theory of social support in the context of discussions about ACP. The results also provide a foundation for developing conversational guides to facilitate high-quality family conversations about ACP between adult children and their parents.