‘Regulatory Action’ by Patients and Family Caregivers to Overcome Barriers to Accessing Voluntary Assisted Dying: A Qualitative Study in Victoria, Australia

Voluntary assisted dying (‘VAD’) commenced in Victoria, Australia, in 2019. Drawing on qualitative interviews, we investigate how patients’ and family caregivers’ actions to overcome access barriers may be conceived of as ‘regulatory’. We adopt Julia Black’s definition of regulation as sustained, focused, and intentional action to alter behaviour. Participants performed various actions to overcome access barriers, primarily motivated by a desire to support VAD access for individual patients. However, many participants sought to make the VAD system better for others. Participants perceived their actions improved individual experiences of VAD and sometimes also altered the behaviour of key participants in Victoria’s VAD system or impacted the system more broadly. Patients and family caregivers should have opportunities to be involved in regulation if they wish. However, consideration must be given to addressing VAD access barriers to reduce the burden on patients and family caregivers of having to take action to overcome these barriers.