Agencies Displayed by Patients, Medical Teams, and Caregivers at the End of Life from the Perspectives of Family Members – A Qualitative Study

Abstract

Background: End-of-life (EoL) Care is challenging for terminally-ill patients and their caregivers. This research is aimed to examine the relational agencies of the patients, the caregivers, and the medical teams in the context of EoL care, with a particular emphasis on the caregivers. Methods: This study is based on the qualitative analysis of interviews with 12 individuals who were closely supported a loved one to their death from a terminal illness. Results: Information collected revealed several agency-related themes. Family caregivers are significant entities in managing the ‘case’ of a seriously ill individual. At the final or more advanced stages of the EoL process, caregivers gradually shift from a supportive role to being active agents, but not always backed by the necessary experience, knowledge, or the requisite emotional resilience. Conclusions: Based on recognizing their agentic proactivity, a clear and elaborate articulation of the family caregivers' roles is needed.