Australian Centre for Health Law Research, Faculty of Business and Law, Queensland University of Technology, Brisbane, Queensland, Australia.
Health Expect. 2023 Dec;26(6):2695-2708. doi: 10.1111/hex.13867. Epub 2023 Sep 11.
Voluntary 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.
We 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.
We 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.
Legal, 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 The legal prohibition on doctors raising the topic of VAD should be repealed, and doctors and institutions who do not wish to be involved in VAD should be required to connect patients with appropriate contacts within the system.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.
Families 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.
安乐死（VAD）在国际上越来越被合法化。在澳大利亚，所有六个州现在都通过了这样的法律，维多利亚州于 2019 年成为第一个通过该法律的州。然而，维多利亚州早期对寻求安乐死的患者体验的研究表明，与安乐死系统建立联系具有挑战性。本研究分析了造成这种“准入点”障碍的原因。
我们通过社交媒体和患者兴趣小组招募了 32 名家庭护理人员和一名寻求安乐死的患者进行半结构化定性访谈。对数据进行了主题分析。我们还对监督机构自愿协助死亡审查委员会的公开报告进行了文件分析（内容和主题）。
我们在 28 次访谈中采访了 32 名家庭护理人员和 1 名患者，并分析了 6 份委员会报告。在访谈和报告中都报告说，找到进入安乐死系统的途径具有挑战性。确定了与系统建立联系的四个具体障碍：（1）不知道安乐死是一种合法的选择；（2）没有意识到一个人可能有资格接受安乐死；（3）不知道下一步或实际上无法实现；（4）由于法律禁止医生这样做，患者面临提出安乐死话题的挑战。
需要对法律、政策和实践进行变革，以促进患者能够与安乐死系统建立联系。应该废除医生提出安乐死话题的法律禁令，并要求那些不希望参与安乐死的医生和机构将患者与系统内的适当联系人联系起来。需要开展社区宣传活动，提高对安乐死的认识，特别是在维多利亚州，安乐死相对较新。
家庭和患者是这项研究的重点，对他们寻求安乐死的经历进行访谈是分析的主要数据来源。本文包括他们解决已确定的准入障碍的方法。患者兴趣小组也支持了参与者的招募。
