Problematic Integration and Family Communication about Decisions at the End of Life

Abstract

ABSTRACTMaking a decision on behalf of a family member at the end of life (EOL) is a highly uncertain and anxiety-ridden experience. To examine how families navigate this complex, emotionally stressful situation, Problematic Integration theory was applied as a lens for understanding EOL decision experiences managed in the context of the family. Drawing on qualitative data from interviews with 22 family members who participated in family conversations about an end-of-life decision, this study demonstrated that family members encounter multiple sources of uncertainty and divergence, including questions regarding whether or not a family member’s life is ending, what the decision should be, and who should make or participate in the decision. Family members’ stories also identified ways in which medical professionals and communication about the wishes of the patient helped family members manage problematic integration. Finally, findings revealed experiences where problematic orientations were not transformed after family members made an EOL decision.