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.

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Acknowledgements

We would like to acknowledge and sincerely thank each participant for their time and vulnerability and for trusting us with their stories.

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Correspondence to Tharshika Thangarasa MD.

Ethics declarations

We would also like to thank the Canadian Cancer Society for funding this study (grant #705663).

Conflict of Interest

The authors have no conflicts of interest other than their roles within the MAiD programs at University Health Network (ML) and Sunnybrook Health Sciences Centre (DS, SB, EI).

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Thangarasa, T., Hales, S., Tong, E. et al. A Race to the End: Family Caregivers’ Experience of Medical Assistance in Dying (MAiD)—a Qualitative Study. J GEN INTERN MED (2021). https://doi.org/10.1007/s11606-021-07012-z

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Key Words

  • quality of care
  • assisted dying
  • caregiver distress