Indigenous patients with life-limiting conditions have complex needs, experience reduced access to and uptake of treatment, and have lower utilisation of palliative care services than the general population. Lack of understanding of the role of palliative care and poor availability of culturally safe specialist palliative care services impact on Indigenous people’s end-of-life decision-making.
The present article has approached learning about end-of life wishes by bringing together insights gained through two different types of discussion about dying and end-of-life wishes with Aboriginal people.
Importance of study:
Despite premature loss of life experienced by Aboriginal people in Australia, little information is known regarding their attitudes to end-of-life discussions and their use of and experiences related to end-of-life care. The Australian literature related to palliative care and Aboriginal people is small, and to date been largely reported on the experiences of Aboriginal people in the Northern Territory, including issues such as dying on country, viewing and caring for the body post-death and ceremonial practices, and traditional post-death rituals such as smoking ceremonies and the wailing associated with sorry camps.
Study type: To understand Aboriginal people’s perspectives and experiences at the end of life, an exploratory study using facilitated group discussions in community settings in a region of Western Australia was undertaken. Local Aboriginal people were engaged to talk frankly about their wishes and concerns around end of life. The community consultations included two meetings at the local Aboriginal corporation, an evening meeting for invited community members, a meeting at the local Aboriginal community controlled health service and two further meetings of community members at local gathering places. These were supplemented by the analysis of previous in-depth video-recorded interviews that were undertaken with Aboriginal people with cancer reporting on their concerns and wishes.
Conclusion: Within a safe space, Aboriginal people were happy to talk about end-of-life wishes, although certain aspects of death remain contentious. Sorting cards, ceremonies, education and care roles involving Aboriginal people offer potential means for effectively engaging Aboriginal people in preparing for death and dealing with grief.
- The community consultations raised considerable discussion about wills, where to die, burial versus cremation, and the cost of funerals.
- Possibilities emerging from participants’ reflections on the issue were public celebrations to honour someone’s life, the potential use of sorting cards to help discussions about end-of-life personal wishes, and interest in making and decorating coffins.
- Aboriginal people with cancer raised similar issues, and focused on avoiding family disharmony by ensuring their family were aware of their end-of-life wishes.