Improving the Medical Assistance in Dying (MAID) process: A qualitative study of family caregiver perspectives
Abstract
Objective: The road to legalization of Medical Assistance in Dying (MAID) across Canada has largely focused on legislative details such as eligibility and establishment of regulatory clinical practice standards. Details on how to implement high-quality, person-centered MAID programs at the institutional level are lacking. This study seeks to understand what improvement opportunities exist in the delivery of the MAID process from the family caregiver perspective. Method: This multi-methods study design used structured surveys, focus groups, and unstructured e-mail/phone conversations to gather experiential feedback from family caregivers of patients who underwent MAID between July 2016 and June 2017 at a large academic hospital in Toronto, Canada. Data were combined and a qualitative, descriptive approach used to derive themes within family perspectives. Result: Improvement themes identified through the narrative data (48% response rate) were grouped in two categories: operational and experiential aspects of MAID. Operational themes included: process clarity, scheduling challenges and the 10-day period of reflection. Experiential themes included clinician objection/judgment, patient and family privacy, and bereavement resources. Significance of results: To our knowledge, this is the first time that family caregivers’ perspectives on the quality of the MAID process have been explored. Although practice standards have been made available to ensure all legislated components of the MAID process are completed, detailed guidance for how to best implement patient and family centered MAID programs at the institutional level remain limited. This study provides guidance for ways in which we can enhance the quality of MAID from the perspective of family caregivers.
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Recent studies highlight the need for holistic, interdisciplinary care, relationship building and anticipatory guidance throughout the process, as well as bereavement supports for family and loved ones, and dedicated space for MAiD provision.
“Recent studies have also highlighted the need for holistic, interdisciplinary care, relationship building and anticipatory guidance throughout the process, as well as bereavement supports for family and loved ones, and dedicated space for MAiD provision [25–27].”
Participants identified support needs for both patients and families during and following the MAiD MI-SUMC assessment, including instrumental supports with end-of-life planning, and bereavement supports for families.
“participants identified support needs for both patients and families during and following the MAiD MI-SUMC assessment, including, in alignment with prior studies on MAiD for conditions other than mental illness [26, 58, 59], instrumental supports with end-of-life planning, and bereavement supports for families [60].”
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- Authors
- Hales, B. M., Bean, S., Isenberg-Grzeda, E., Ford, B., & Selby, D.
- Affiliations
- Sunnybrook Health Science Centre (CA)
- University of Toronto (CA)
- Corresponding author
- Hales, Brigette M.
- Venue
- Palliative and Supportive Care
- Publisher
- Cambridge University Press (CUP)
- Published
- 2019-03-19
- Volume
- 17
- Issue
- 5
- Pages
- 590-595
- ISSN
- 1478-9515 (ISSN-L)
- 1478-9523
- OpenAlex
- W2923663325
- Cited by
- 62
- References
- 22
- Citations by year
- 2026: 8 · 2025: 4 · 2024: 15 · 2023: 10 · 2022: 6 · 2021: 11 · 2020: 7 · 2019: 1
- FWCI
- 5.75
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Palliative & Supportive Care (publishedVersion)
- PubMed (publishedVersion)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics and bioethics in healthcare
- Keywords
- medical assistance in dying, family caregivers, person-centred care, clinical judgment, bereavement support, appointment scheduling, institutional implementation, end-of-life care
- MeSH terms
- Adult, Female, Humans, Male, Medical Assistance, Ontario, Surveys and Questionnaires, Caregivers, Suicide, Assisted, Qualitative Research
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