Family Communication About End-of-Life Decisions

Abstract

Purpose: For adults with serious illness nearing the end of life there are difficult decisions to be made about medical care and treatment. However, persons with life-threatening illness are commonly incapacitated, leaving the responsibility for making critical end-of-life decisions to family. To date, research on end-of-life decision-making and communication has framed proxy decision-making as a role for a “key” individual, despite growing evidence that multiple relatives often make decisions together. Also, although the literature examines communication between clinicians and patients or surrogates there is little research focused on family communication and how it relates to end-of-life decisions. The objective of the current study is to move towards bridging these gaps by examining within-family communication and decision-making from the perspectives of the family members themselves. Methods: This qualitative study explored family communication about end-of-life decisions through in-depth family interviews (n = 22). I applied Relational Dialectics Theory 2.0, a framework used for understanding relational communication within a particular context. To examine text derived from interviews, I used contrapuntal analysis, a type of discourse analysis that facilitates identification of competing discourses. Results: Three competing sets of discourses were predominant: 1) families providing care versus families relinquishing care, 2) independent versus interdependent decision-making, and 3) the certainty of knowing the patient’s wishes versus the uncertainty of knowing how to honor those wishes. Conclusions: The results highlight three key aspects of family decision-making. First, because families perceived caring for a loved one at home as normative, relinquishing end-of-life care to hospice or long-term care was a significant source of emotional burden. Second, families engaged in collaborative decision-making rather than having a primary decision-maker acting independently. Third, even when a patient’s wishes were known to the family, decision-makers still struggled with the uncertainty of understanding how to apply those preferences to medical decisions. Implications: This study provides insight into the communicative needs of family decision-makers that can be used to refine communication interventions and improve end-of-life experiences for families. These findings also suggest that more support is needed from clinicians to guide decision-makers with in-the-moment decision-making.