The Dr Dorothea Sandars and Irene Lee Churchill Fellowship to investigate palliative care and voluntary assisted dying

A number of issues and recommendations arose from the Churchill Fellowship: 1. National database: Cognisant of difficulties described in other countries, as legislation develops in other states, Department of Health & Human Services (DHHS) officers in Victoria need to advocate with colleagues in other states for the development and agreement on a national minimum dataset. It is important to enlist the assistance of relevant politicians to table this issue at meetings of the Council of Australian Governments at an appropriate time. 2. Care of providers: This was important in all countries and requires urgent consideration by the Department of Health & Human Services, to enable development of support structures for a critical mass of providers in the roll-out of the legislation, particularly in response to the anticipated significant numbers of enquiries in the first few months. Whether formalised or clinician-led, it requires support and leadership direction from DHHS. In particular, some clinicians will be ‘early adopters’ of the new legislation and necessarily become lead clinicians of the process. Those not afraid to speak of their experiences need to be recognised, supported and protected in this leadership role.    3. Coordinating and navigator roles: These were valued as pivotal in providing information to the community and clinicians, leading end-of-life conversations and facilitating access to providers. The Victorian navigators need to be recognised as pioneers, and require close support and supervision. Their caseload requires monitoring (noting the Canadian suggestion of about 15 people at any one time) to prevent burnout.   Additionally, the navigator roles require administrative support, to not distract them from their vital outward-looking role. 4. International links: There is benefit in making international connections with relevant like-roles, for example, with members of reporting Boards, with data managers, and providers and navigators. 5. Public messages on assistance in dying: In many places visited, structural issues inhibit the ready availability of many aspects of healthcare (including assistance in dying), particularly for those who live outside large population areas. Broad public messages need to be about end-of-life care to ensure community understandings about care options.  Additionally, in relation to Voluntary Assisted Dying, there is a need to temper the community expectations of the ‘right to die’ with the ability to deliver, as well as imparting clear messages about eligibility criteria. 6. The medical community: There is benefit in cultivating clear relationships between medical bodies like the Australian Medical Association, relevant Royal Colleges, AHPRA and the Voluntary Assisted Dying Review Board, in order to develop trust in the reporting and accountability roles of the Board. In particular, reporting processes need to ‘close the loop’ on cases, in providing timely feedback to individual providers.  There is a need to harness relevant medical educators and those responsible for curriculum development, to ensure education on end-of-life care is mandated in all medical courses. 7. Information and accountability to the community: There was interest in every place visited as to how assistance in dying was going. Ways of reporting to the community on the status of legislation was evident, with appreciation for transparency and access. Importantly, in the early days of Victorian legislation, there is a need to build community trust in the implementation of the legislation, and confidence that it is working as it should. This would be achieved by the development of a media plan and an agreed set of responses to the media and other groups. 8. Research: There is a need to establish open communication and clear relationships between the Voluntary Assisted Dying Review Board and those wishing to undertake research. Specifically, consent to involvement in research needs to be sought early in the process of assistance in dying. Particular research needs to be directed to aspects not captured by the database – access to end-of-life care, what occurs before a formal request is made, and examining the journey between the individual receiving medication and their death, for example Keywords: Voluntary Assisted Dying, euthanasia, autonomy, suffering