The results of a five-year study designed to “identify what should be, what is, and what could be done to support effective advance care planning and associated end-of-life care” within vulnerable communities among groups known to have increased risk of poor health outcomes in South Australia.
The Advance Care Planning with Vulnerable Populations report documents the activities and findings of research conducted with in-patients, carers, and legal and medical practitioners concerning advance care planning has revealed the need for greater awareness and better resources, including better supporting culturally appropriate planning and decision-making for end-of-life care.
The advance care planning process is intended to enable people to make decisions and plan for their future care and guide those around them, including carers and medical professionals, regarding their wishes if the person becomes unable to do so themselves.
The Northern Community Health & Research Foundation has been actively involved in this project, originally providing funding for the pilot project that provided the necessary data to successfully gain NHMRC funding for the major project. The Foundation also subsequently funded additional scholarships contributing to the research study. The report was officially launched on 26 August 2024 at a special reception at Government House, attended by the Hon Nat Cook Minister for Human Services, the Hon Chief Justice Chris Kourakis SC, Governor’s Deputy, Project Lead A/Prof Jaklin Eliott Project, research team member and NCHRF Board Member, Professor Greg Crawford AM and Dr Katherine Hodgetts.
South Australia has had a free Advance Care Directive document available since 2013 however, a key finding of this study is that advance care planning is not well-understood either in the community or among health and legal practitioners.
The study included individuals with “life-limiting diagnoses” and individuals identifying as Aboriginal or Torres Strait Islanders, along with participants whose first language was other than English. Differing levels of health and computer literacy are also factors in confusion about the process, along with a lack of opportunity for the inclusion of “culturally responsive” processes such as group and oral decision-making about end-of-life care.
The research team recommends improvements to resources and more effective embedding and education about advance care planning in healthcare systems, policy, and practice standards.
Reference: Elliot et al. (2024) Report: Advance care planning with vulnerable populations (NH&MRC Partnership Grant App1133407. The University of Adelaide.
(embedded link) https://health.adelaide.edu.au/public-health-and-palliative-care/ua/media/260/eliott-2024-acp-report.pdf
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