Alignment and mismatch in role relations at end-of-life: A constructivist grounded theory study

Abstract

In this Australian, constructivist grounded theory study, we undertook in-depth interviews with 11 dying people and 8 caregivers to examine their perspectives on role relations at endof-life. We found that situations of role alignment between dying people and their family and friends support positive relational and practical outcomes, whereas role mismatch can cause considerable distress. Factors contributing to role mismatch at end-of-life were: dying people and their caregivers' efforts to shield each other from emotional harm; fear of social exclusion; and unwanted focus on the dying identity. Our findings highlight a need for flexibility and adaptability in end-of-life role relations.

Beyond Patient-Provider Relationships: Expanding the Roles and Boundaries of Families during Patient End-of-Life

“…When families are present, and especially when families show outward and public expressions of grief and distress, HCP often feel pulled or are invited to cross boundaries, by either sharing their emotions or by supporting and caring for the family members who are exhibiting such distress. This may, in turn, increase feelings of role strain or conflict due to HCP, patients, and families not having an accurate or consistent roadmap for managing roles and boundaries at patient EOL (Lowrie et al, 2021). HCP are accustomed to their traditional role where they bring hope, cures, and treatment to their patients, while patients and families are familiar with their need to follow prescribed recommendations to achieve optimal health and healing, while each remaining somewhat detached and personally disconnected from one another.…”