Original Research

Passing on wisdom: exploring the end-of life wishes of Aboriginal people from the midwest of Western Australia

AUTHORS

Sandra Thompson1 PhD, Professor of Rural Health UWA/ Director WA Centre for Rural Health *

Marilyn Lyford2 0

Lennelle Papertalk3 0, Community Engagement Officer

Michele Holloway4 0

AFFILIATIONS

1, 2, 3, 4 Western Australian Centre for Rural Health, The University of Western Australia, 167 Fitzgerald Street, Geraldton, Western Australia 6530, Australia

ACCEPTED: 4 October 2019


early abstract:

Introduction: 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.

Methods: 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 Organisation 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.

Results: 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 focussed on avoiding family disharmony by ensuring their family were aware of their wishes in relation to end-of-life wishes.

Conclusions: Within a safe space, Aboriginal people were happy to talk about end-of-life wishes despite noting that 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.