Ms Ruthie Jeanneret1
1Australian Centre for Health Law Research, Queensland University Of Technology
Abstract: Voluntary assisted dying (VAD) laws have been enacted in all Australian States. Patients are central to VAD because they provide the impetus for legalisation (a compassionate choice for patients suffering at end of life) and they are the most heavily impacted by regulation of VAD systems. Despite the centrality of patients, little is known about the role of patients (or their caregivers) in how VAD is regulated. In this presentation, regulation is conceived of as being broader than law made by the State.
Patients and caregivers influence behaviour and shape law, policy, or practice in Victoria’s VAD system (either intentionally or unintentionally), and therefore have a role as “regulatory actors”. This includes by making complaints and providing feedback about how the VAD system is working in practice; public advocacy (such as radio, podcasts, newspaper articles); contacting politicians; participating in research; and sharing information to increase awareness of VAD.
Semi-structured, qualitative interviews were conducted with 33 individuals in Victoria, Australia, about 28 experiences of VAD. 32 participants were family caregivers of individuals and 1 was an individual patient. Interviews were transcribed and thematically analysed. This presentation reports on the findings of the interviews in relation to the role of patients and caregivers as regulatory actors in Victoria’s VAD regulatory system.
Patients are more than just passive recipients of healthcare. This finding has implications for how the roles of patients and caregivers are conceived and can be utilised to enhance VAD regulation, and safety and quality of healthcare more broadly.
Biography:
Ruthie is a PhD Candidate and Senior Research Assistant. Ruthie’s PhD examines patients’ and caregivers’ role as regulatory actors in Australian and Canadian voluntary assisted dying systems.
Ruthie graduated from the University of Tasmania with a BA/LLB (First Class Honours) in 2017, and practised in litigation prior to commencing her PhD.