Quality of Bereavement for Caregivers of Patients Who Died by Medical Assistance in Dying at Home and the Factors Impacting Their Experience: A Qualitative Study.

Abstract

Background: Medical Assistance in Dying (MAiD) was legalized in Canada in June 2016. MAiD is available to those who are at least 18 years of age with an irremediable medical condition and an irreversible state of decline causing unbearable suffering. Between June 2016 and December 2019, 13,946 MAiD cases were reported in Canada.3 Although 35.2% have taken place in the home, very little is known about the experience of caregivers in this setting. Objectives: This study explored caregivers' experience with MAiD in the home-setting and their bereavement process. Setting/Subjects: Caregivers of patients of the Temmy Latner Centre for Palliative Care in Toronto, Canada, who underwent MAiD by a physician at home. This study was approved by the Sinai Health Research Ethics Board. Design: This study used a semistructured interview guide and standardized questionnaires. Thirteen caregivers were contacted at least six months post-MAiD to participate in a one-on-one interview. The interviews were transcribed, coded, and evaluated using a thematic analysis approach. Results: The main themes that emerged from the interviews were the caregivers' experience with MAiD, their interaction with the MAiD team, disclosure about MAiD, their bereavement experience, and comparison of experiencing a MAiD death to a natural death. Conclusion: We hypothesize that caregivers in our study were better prepared for the upcoming death due to more certainty as to how and when their loved one would die. Having closure and being able to say goodbye may also have positively influenced the bereavement experience. Finally, MAiD may have spared the caregivers the trauma of witnessing their loved one deteriorate in their final days of life.