‘My Advocacy is Not About Me, My Advocacy is About Canadians’: A Qualitative Study of how Caregivers and Patients Influence Regulation of Medical Assistance in Dying in Canada

Abstract Medical assistance in dying (MAiD) was legalised federally in Canada after the Supreme Court decision in Carter v Canada (Attorney General) [2015] 1 SCR 331. The federal legislative framework for MAiD was established via Bill C-14 in 2016. Caregivers and patients were central to Carter and...

Full description

Saved in:
Bibliographic Details
Published in:Medical law review 2024-08, Vol.32 (3), p.301-335
Main Authors: Jeanneret, Ruthie, Close, Eliana, Downie, Jocelyn, Willmott, Lindy, White, Ben P
Format: Article
Language:English
Subjects:
Assisted suicide
Canada
Caregivers - legislation & jurisprudence
Euthanasia
Female
Humans
Law reform
Male
Medical care
North American People
Original
Patient Advocacy - legislation & jurisprudence
Qualitative Research
Suicide, Assisted - legislation & jurisprudence
Citations: Items that cite this one
Online Access:Get full text
Tags: Add Tag
No Tags, Be the first to tag this record!
Description
Summary:Abstract Medical assistance in dying (MAiD) was legalised federally in Canada after the Supreme Court decision in Carter v Canada (Attorney General) [2015] 1 SCR 331. The federal legislative framework for MAiD was established via Bill C-14 in 2016. Caregivers and patients were central to Carter and subsequent litigation and advocacy, which resulted in amendments to the law via Bill C-7 in 2021. Research has primarily focused on the impacts of regulation on caregivers and patients. This qualitative study investigates how caregivers and patients influence law reform and the operation of MAiD practice in Canada (ie, behave as ‘regulatory actors’), using Black’s definition of regulation. We found that caregivers and patients performed sustained, focused, and intentional actions that influenced law reform and the operation of MAiD in practice. Caregivers and patients are not passive objects of Canadian MAiD regulation, and their role in influencing regulation (eg, law reform and MAiD practice) should be supported where this is desired by the person. However, recognising the burdens of engaging in regulatory action to address barriers to accessing MAiD or to quality care, and MAiD system gaps, other regulatory actors (eg, governments) should minimise this burden, particularly where a person engages in regulatory action reluctantly.
ISSN:1464-3790
0967-0742
1464-3790
DOI:10.1093/medlaw/fwae012