A Race to the End: Family Caregivers' Experience of Medical Assistance in Dying (MAiD)-a Qualitative Study

Abstract

Background: The June 2016 legalization of medical assistance in dying (MAiD) provided an added layer of choice to end-of-life care in Canada. Family caregivers play an important role in patient end-of-life decision-making. They may experience unique psychological burden or distress associated with their role. However, we know little about the caregiver experience associated with patient MAiD requests and the nature of psychosocial supports caregivers require before, during, and following MAiD intervention.

Objective: The objective of this study is to better understand the caregiver experience of MAiD within the Canadian legal landscape following Bill C-14.

Design: Caregiver experience was examined based on qualitative, semi-structured interviews.

Participants: A total of 22 caregivers of patients who had requested MAiD were interviewed.

Approach: Transcripts were recorded, transcribed, and analyzed based on grounded theory methodology.

Key results: The caregiver experience of MAiD within the legal framework was found to be understood as a "race to the end," with the ultimate goal of creating an ideal dying experience for the patient while balancing a threat to capacity that would undermine their access to MAiD. Caregivers can be described within the overarching framework as either co-runners or onlookers. Sources of caregiver distress were linked to these roles.

Conclusions: The "race to the end" theoretical model contributes new knowledge and understanding that can inform the development of tailored support services for caregivers, the impact of legislative changes on this population, and future research examining decision-making near end of life and the caregiver experience.

Keywords: assisted dying; caregiver distress; quality of care.