Health care in Australia is delivered in specialised segments across a complex system. Tracking the patient journey through the different segments is an effective way to evaluate how and why the system works – or doesn’t work.
Mapping the patient journey for Aboriginal and Torres Strait Islander patients offers a way to understand the broader implications of accessing health services, particularly for patients living on country in rural and remote areas and travelling for treatment.
Focusing on South Australia and the Northern Territory and building on earlier research, the Managing Two Worlds Together (MTWT) study analysed some of the critical segments and gaps in the Aboriginal patient journey.
Funded by the Lowitja Institute and SA Health, the MTWT research was conducted by a team from Flinders University, the University of Adelaide, South Australian Health and Medical Research Institute, the Aboriginal Health Council of South Australia, and SA Health, working closely with patients and their families, and with health care practitioners in city, rural and remote health sites.
One MTWT case study produced in Port Augusta records the priorities for a long-term dialysis patient wishing to return to her remote home community for end-of-life care. A local Clinical Services Coordinator and Aboriginal Patient Pathway Officer worked closely together using the MTWT tools to map the patient’s journey.
During the journey, the Clinical Services Coordinator spoke to the patient about her end-of-life options, and the patient decided she would rather go home and die than stay in Port Augusta and slowly deteriorate. Once she had made that decision, her health deteriorated rapidly. A series of plans, involving a number of key people (including the patient and her family, health professionals, and community health workers), were made to accommodate the woman’s wishes and get her home as soon as possible.
Travel arrangements, advanced care planning, palliative care, and the provision of services in the patient’s home remote community were all among a range of overlapping and complex elements that had to be thought through and facilitated to enable the woman to return home for her final days. In this instance the patient did make it home to her family, and the MTWT team were advised that she passed very peacefully.
When read in detail, this case study highlights the behind-the-scenes work required when clear pathways and resources are not in place to facilitate culturally appropriate care which meets the patient’s wishes and needs. The mapping process also encourages consideration of opportunities for knowledge sharing and continuous quality improvement within, and across, services. The Renal Focus Group involved in the project is using the study for education and care planning.
The research, case studies, and practical tools produced by the Managing Two Worlds Together project can be used by health professionals, patients and their families to identify what support is needed, and how coordination, communication, collaboration and cultural safety can be improved. Working proactively with Aboriginal and Torres Strait Islander patients to create better patient journeys will deliver better health outcomes for First Nations peoples.
Reports, casebooks and workbook are available at: https://www.lowitja.org.au/publications
Fiona Walls, Communication Officer, Lowitja Institute