• Tharshika Thangarasa, Sarah Hales, Eryn Tong, Ekaterina An, Debbie Selby, Elie Isenberg-Grzeda, Madeline Li, Gary Rodin, Sally Bean, BellJennifer A HJAHDepartment of Supportive Care, Princess Margaret Cancer Centre, University Health Network, Toronto, Ontario, Canada.Department of Psychiatry, Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada., and Rinat Nissim.
• Department of Supportive Care, Princess Margaret Cancer Centre, University Health Network, Toronto, Ontario, Canada. tthan020@uottawa.ca.
• J Gen Intern Med. 2022 Mar 1; 37 (4): 809815809-815.

BackgroundThe 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.ObjectiveThe objective of this study is to better understand the caregiver experience of MAiD within the Canadian legal landscape following Bill C-14.DesignCaregiver experience was examined based on qualitative, semi-structured interviews.ParticipantsA total of 22 caregivers of patients who had requested MAiD were interviewed.ApproachTranscripts were recorded, transcribed, and analyzed based on grounded theory methodology.Key ResultsThe 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.ConclusionsThe "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.© 2021. Society of General Internal Medicine.

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