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.

Access to voluntary assisted dying in Victoria: a qualitative study of family caregivers’ perceptions of barriers and facilitators

“…[3][4] Some barriers are new, such as the impact of institutional objection on access. 30 These barriers are broadly similar to those reported overseas, including the urgency imposed by the progression of a person's illness, 18 difficulties in locating a coordinating practitioner, 19 and the impact of institutional objections. 19,21,31 The experiences of caregivers were generally consistent with those of doctors, and suggest that more needs to be done to ease access for eligible people, including efforts to further mitigate system complexity.…”

“…[12][13][14][15][16] Procedural barriers to and facilitators of access, as reported by people seeking assistance and their caregivers, have also been reported. 10,[17][18][19][20][21] Given the lack of research in Australia, we investigated the early experiences of people seeking an assisted death under the Voluntary Assisted Dying Act 2017 (Vic), 22 focusing on barriers to and facilitators of access.…”

“…Overseas investigations of the personal experience of voluntary assisted dying have examined communication during eligibility assessments 10‐11 and the factors underlying applications for assisted dying 12‐16 . Procedural barriers to and facilitators of access, as reported by people seeking assistance and their caregivers, have also been reported 10,17‐21 …”

Medical Assistance in Dying: A Review of Canadian Health Authority Policy Documents

“…Patients and family are the most important stakeholders in the MAID process, and a robust body of literature is developing around their needs—needs which are overwhelmingly related to care coordination and a patient-centered approach to care ( Oczkowski et al, 2021a , 2021b ). Patients and family want ready access to information about MAID, transparency around the process, anticipatory guidance, choice about location and timing, and emotional and tangible support for what can be a complicated and intense experience ( Brown et al, 2020 ; Smolej et al, 2023 ; Thangarasa et al, 2022 ). Policies reviewed in this manuscript provide important guidance for healthcare providers in supporting informed patient choice, accommodating wishes regarding timing and location of death, obtaining full and informed consent, and providing anticipatory guidance.…”

The Expansion of Medical Assistance in Dying in the COVID-19 Pandemic Era and Beyond

“…Patients usually seek MAiD in Canada because they experience debilitating symptoms that diminish their quality of life, 2,3 perceived burden on family members and informal caregivers, [4][5][6] and loss of dignity. 2,7 The Health Canada first annual report on MAiD has confirmed reasons that have prompted individuals to choose MAiD (Table 1).…”