The force for good: how patients and families shape VAD
Patient and family voices have been a powerful force in voluntary assisted dying (VAD) law reform for many years.
People across Australia have shared stories and successfully advocated for the introduction of VAD laws which facilitate a new and important end-of-life choice. But patients and families have not stopped at advocacy to legalise VAD.
New PhD research has found that patients and families continue to shape VAD systems, including by influencing ongoing law reform processes and the operation of VAD in practice.
Dr Ruthie Jeanneret, who conducted the research at the Australian Centre for Health Law Research, Queensland University of Technology, explains some of the ways patients and families have been motivated to improve the system for the greater good.
Sharing stories
Storytelling is a central way patients and families shape VAD systems. Many patients and families shared stories of accessing, or supporting a person to access, VAD through television and print media articles, documentaries, podcasts, presentations, and personal discussions with their friends, families, on social media posts, and broader social networks.
Sometimes storytelling focussed on honouring a person’s legacy or bringing awareness to VAD and sometimes on highlighting issues, such as barriers to access. One person said:
‘…that's probably why I participated in some of those media opportunities, was to try to get the people to be aware, to be thinking of it, to start those conversations…’
For some families supporting a person through the process of seeking VAD, being able to see others’ personal stories was a comfort.
Participating in research
Research plays a critical role in understanding and improving VAD systems. Everyone interviewed in this study had participated in research and some commented it was a useful and therapeutic way to share stories and contribute to knowledge on VAD.
Providing feedback or making a complaint
Feedback is an important part of improvement and because VAD systems across Australia are relatively new, this is particularly crucial. Many patients and families provided (or planned to provide) feedback to health care institutions, health professionals, governments, policymakers, and VAD review boards about good and bad aspects of their experience.
‘I think [co-participant] and I each feel very strongly about [the prohibition on registered health practitioners raising VAD with patients in Victoria]. In fact, I'm intending to write a letter to the Review Board on our experience and what have you, and that's going to be one of the things I mention as a bit of a learning experience. Maybe not directly relevant to mum, but for the benefit of others.’
Getting involved in parliamentary processes
Some people also contacted members of parliament to advocate for VAD or provided feedback in support of law reform. One person said:
‘…that's my main bugbear [the prohibition on telehealth being used for VAD in Victoria due to Commonwealth laws] and I've written to a couple of federal MPs about this and the relevance of this law in today's society.’
Some were involved in providing evidence during parliamentary processes.
Taking on a role within the VAD system
Some family members who are medical professionals became VAD providers themselves. Other health professionals, such as nurses and social workers, could also be involved in supporting patients and families through the VAD process in informal roles or by providing information and raising awareness. For those who are not health professionals, one way to get involved was to volunteer as an independent witness for written requests for VAD. There is also strength in numbers. Joining advocacy organisations or peer support groups may help amplify patient and family voices and advocacy to improve VAD systems.
These are just some of the ways in which patients and families shape change in VAD systems. The actions of patients and families reflect a desire by those who have walked the path to make the system a little better for the benefit of others.
More information
This article is based on Dr Ruthie Jeanneret’s PhD thesis, which investigated the role of patients and families in shaping VAD systems, and will be presented at the Trans-Tasman Voluntary Assisted Dying conference in Brisbane on October 28-29.
The PhD research was conducted at the Australian Centre for Health Law Research, Queensland University of Technology, as part of a broader international study led by Professor Ben White, supervised by Dr Eliana Close and Professors Lindy Willmott and Ben White.
Dr Ruthie Jeanneret is a Lecturer at The University of Queensland and can be contacted at: [email protected]