Barriers to connecting with the voluntary assisted dying system in Victoria, Australia: A qualitative mixed method study

Abstract

IntroductionVoluntary assisted dying (VAD) is increasingly being legalised internationally. In Australia, all six states have now passed such laws, with Victoria being the first in 2019. However, early research in Victoria on the patient experience of seeking VAD shows that finding a connection to the VAD system is challenging. This study analyses the causes of this ‘point of access’ barrier.MethodsWe conducted semi‐structured qualitative interviews with family caregivers and a person seeking VAD, with participants recruited via social media and patient interest groups. Data were thematically analysed. We also undertook documentary analysis (content and thematic) of publicly available reports from the oversight body, the Voluntary Assisted Dying Review Board.ResultsWe interviewed 32 family caregivers and one patient across 28 interviews and analysed six Board reports. Finding a point of access to the VAD system was reported as challenging in both interviews and reports. Four specific barriers to connecting with the system were identified: (1) not knowing VAD exists as a legal option; (2) not recognising a person is potentially eligible for VAD; (3) not knowing next steps or not being able to achieve them in practice; and (4) challenges with patients being required to raise the topic of VAD because doctors are legally prohibited from doing so.ConclusionLegal, policy and practice changes are needed to facilitate patients being able to find a connection to the VAD system. The legal prohibition on doctors raising the topic of VAD should be repealed, and doctors and institutions who do not wish to be involved in VAD should be required to connect patients with appropriate contacts within the system. Community awareness initiatives are needed to enhance awareness of VAD, especially given it is relatively new in Victoria.Patient or Public ContributionFamilies and a patient were the focus of this research and interviews with them about the experience of seeking VAD were the primary source of data analysed. This article includes their solutions to address the identified point of access barriers. Patient interest groups also supported the recruitment of participants.

Patients' and Caregivers' Suggestions for Improving Assisted Dying Regulation: A Qualitative Study in Australia and Canada

“…Literature in Canada and Australia identifies issues with AD regulatory systems, such as difficulties in finding information about AD and lack of process clarity [ 20 , 21 , 22 , 28 , 29 , 30 ], the impacts of institutional objection [ 25 , 26 , 27 ] and other legal barriers [ 20 , 21 , 22 , 23 , 24 ]. The specific nature of AD grief is also highlighted [ 66 , 67 ].…”

“…Emphasis throughout this Report, in parliamentary debates, and in wider political discourse in Victoria was placed on the plethora of ‘safeguards’ [ 49 , 50 , 51 ]. This focus on safeguards (potentially, at the expense of access) [ 30 ] is reflected in Victoria's conservative AD model, including the 127‐page Voluntary Assisted Dying Act 2017 (Vic), containing ‘68 safeguards’ [ 5 , 51 ].…”

“…They also take actions that influence wider AD systems in ways that have been characterised as ‘regulatory’, including storytelling, making complaints, providing feedback and law reform efforts [ 18 , 19 ]. These actions to influence AD systems relate to identified system issues within Australian and Canadian systems, including overly restrictive legal requirements [ 20 , 21 , 22 , 23 , 24 ], institutional objections [ 25 , 26 , 27 ] and a lack of awareness and information about AD and care pathways [ 20 , 21 , 22 , 28 , 29 , 30 ].…”

Assisted dying: principles, possibilities, and practicalities. An English physician’s perspective

“…Offering MAiD to a patient who has not raised it could be interpreted as meaning that their suffering is likely to become intolerable, and that MAiD is the recommended way out, thereby impacting negatively on the patient's resilience. On the other hand, a total prohibition on raising the subject, as in Victoria, could prevent someone from exercising their legal right through ignorance [25].…”