How the nature of patients’ and family caregivers’ experiences of assisted dying impacts regulatory action: A qualitative study of Australia and Canada
Ruthie Jeanneret1, QUT Brisbane 1QUT, Brisbane, Queensland, Australia
Abstract
Authors: Ruthie Jeanneret, Eliana Close, Jocelyn Downie, Lindy Willmott, Ben P White
Assisted dying (‘AD’) was legalised federally in Canada in 2016, and all Australian states have passed AD laws since 2017. Evidence is emerging of barriers to access and quality care in both jurisdictions. Prior research in Australia and Canada has found that some patients and family caregivers act as ‘regulatory actors’ who, per Black’s definition, take sustained, focused, and intentional action to alter behaviour. One mediating factor affecting whether a person took regulatory action, which we investigate further in this research, was the nature of their experience.
Sixty semi-structured, qualitative interviews were conducted with 67 participants in Australia and Canada about 61 patient experiences. Our preliminary findings are that four aspects of a person’s experience mediated whether they took regulatory action:
1)encountering regulatory barriers (e.g., institutional objection);
2)encountering wider system-design barriers (e.g., no inbuilt feedback mechanisms);
3)broader social factors (e.g., stigma); and
4)emotional aspects (e.g., grief).
Other regulatory actors in AD systems, such as governments, should respond to address barriers to access or quality AD care where these are highlighted by patients’ and family caregivers’ regulatory actions. Canada has already refined its law via Bill C-7 to address some barriers, responding to advocacy and litigation. Conversely, in Victoria, politicians have signalled laws will not, at this stage, change to address barriers, potentially resulting in the burden of acting to overcome barriers falling to patients and family caregivers. This research highlights the importance of monitoring patient and family caregiver experiences and regulatory actions, and responding, where appropriate.
Biography
Ruthie Jeanneret is a PhD Candidate and Senior Research Assistant in the Australian Centre for Health Law Research at QUT. Her PhD focuses on the role of patients and family caregivers in ‘regulating’ voluntary assisted dying, and draws on qualitative interviews conducted in each country.