Culturally appropriate palliative care and end-of-life care

There is limited data available relating to Aboriginal and Torres Strait Islander people accessing specialist palliative care services. The Palliative Care Outcomes Collaboration report found that only 1.4% of people accessing specialist palliative care services identified as Aboriginal and/or Torres Strait Islander people in the second half of 2017 [35544]. In addition, the information available from the Australian Institute of Health and Welfare shows an over representation of Aboriginal and Torres Strait Islander people being admitted for palliative care-related hospitalisations, with the rate of palliative care-related hospitalisations in public hospitals being about twice as high for Aboriginal and Torres Strait Islander Australians as for other Australians (47 and 23 per 10,000 population respectively) [33114]. This information suggests that there is additional research opportunities to assess whether access to appropriate palliative care is or isn’t working for Aboriginal and Torres Strait Islander people.

The literature suggests that specific principles assist in the delivery of culturally appropriate palliative care for Aboriginal and Torres Strait Islander people, including:

  • equity of access (i.e. equal opportunity for accessing care)
  • empowerment and autonomy, including shared decision making
  • building a respectful and trusting relationship
  • cultural respect [15970].

Directly referring to ‘death’ and ‘dying’ may make people uncomfortable and instead alternative terms can be considered such as ‘finishing up’, ‘passed on’ and ‘not going to get better’. It is important to talk to the key family members and/or decision makers about what they would like to know. In doing so, relevant information on the symptoms experienced by the person with a life-limiting illness, including pain, and the options to manage these symptoms, can be provided. The family may express specific preferences, such as use of traditional medicine, space to accommodate more than one person to stay overnight and room for multiple visitors at once [29818]. Supporting people to observe their traditions at the end of someone’s life can assist the person with a life-limiting illness, as well as help their family and community with their grief and bereavement.

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Key resources

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Carried Lightly by Brian Robinson

Aboriginal and Torres Strait Islander people should be aware that this website may contain images, voices and names of people who have passed away.
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