Creating a Caring Environment

In addition to considerations about person-centred care, steps to provide a caring environment for Aboriginal and Torres Strait Islander people receiving palliative care might include those listed below. Again, the need for these will vary for Aboriginal and Torres Strait Islander individuals, so it is important to discuss their specific cultural needs as early as possible.

Suggestions for a Caring Environment

  • Acknowledge the importance of kinship for many Aboriginal and Torres Strait Islander patients. This includes accommodating and supporting families who may request someone be allowed to stay with the patient at all times. It is especially important that arrangements can be made for the next of kin to stay with the patient while they are in hospital if the situation is critical and/or if the next of kin is the only connection to country or culture that the patient has while there. Note that who is considered next of kin may vary between families. Where possible Aboriginal and Torres Strait Islander patients should not pass away alone because this can be considered important for their passage into the afterlife (spirit world). You may also need to accommodate cultural gatherings that necessitate large numbers of visitors (eg, moving the patient to a larger room near the ward entrance). [1,3,7-9]
  • Recognise the deep relationship of Aboriginal and Torres Strait Islander people to their country, and that place of death can be a core consideration in end-of-life care for some Aboriginal and Torres Strait Islander people. [5,10] Some patients may prioritise their spiritual and cultural needs regarding place of death over their physical distress. [10] While many Aboriginal people have been relocated and no longer live on traditional country, this does not diminish their cultural and spiritual connections to country. The cultural beliefs that that all living things have a spirit, and that life is a continuum cycling through Life-Death-Life, is common amongst Aboriginal and Torres Strait Islander peoples. At the time of death, the spirit leaves the body to return to the Ancestors’ country. For this reason, Aboriginal and Torres Strait Islander people receiving palliative care may desire to return home to country to pass away (or 'Finish up'). [10-12] Assisting the family to help this happen is important. Initiating advance care conversations with patients experiencing life-limiting illness may facilitate these plans. [11,12]  After death, the family and kin are responsible for ensuring the safe passage of the spirit to the ancestors. [1,7,10]
  • Some Aboriginal and Torres Strait Islander patients may benefit from having access to an outside area. There may also be a preference for a bed that allows a consistent view of the outside. This supports spiritual beliefs about the dying trajectory. [8]
  • Access to traditional healers may be important for a patient's health and peace of mind. They can play a valuable role in offering spiritual and emotional support to patients and their families. Supporting and facilitating access to traditional healers when requested assists in meeting the cultural and spiritual needs of patients. [6,8,13] It is also valuable for health professionals to know if their patients are taking traditional bush medicine because there may be potential interactions and side effects involved in using both traditional and western medicines. [13]
  • Make provisions in the care environment for any desired cultural/spiritual rituals and bereavement practices. This might include rituals for the care of the deceased, or smoking ceremonies. [2,4,8] The cultural purpose of smoking ceremonies is to help release the spirit for the journey to country. [1,7-8]
  • For some Aboriginal and Torres Strait Islander people, the use of the terms 'death' or 'dying' may cause discomfort or offence. The terms 'finishing up' or 'passing-on' may be more appropriate references. [1,10] In some Aboriginal and Torres Strait Islander communities, the name of the deceased is not mentioned for a long period of time. This is to ensure that the spirit is not held back or recalled to this world. Clarify whether or not you can use the name of the deceased person, and identify what ‘name’ is suitable. [7-8]
  • The involvement of Aboriginal and Torres Strait Islander people who are part of the Australian health workforce can be an invaluable resource in both hospital and community settings. Creating partnerships with Aboriginal health workers, health practitioners and liaison officers can help ensure culturally relevant requirements are addressed and preferences of the patient and family are considered. [5,7,10]  Liaison with Aboriginal community health organisations and medical services may also be very worthwhile, especially where discharge is considered. The role of primary health care can be particularly important in remote areas, and if a patient chooses to go home to country to 'finish up'. [3,10]
 

And REMEMBER.....

As a matter of principle, an Aboriginal or Torres Strait Islander person should be treated as an individual with individual needs, and not stereotyped. Remember that all Aboriginal and Torres Strait Islander people are not the same and what may be appropriate for one may not be appropriate or relevant for another. [9,11]

  • Every case is different. We’re very flexible. We go by what the family wants, and gently try to find the right time to talk – like, 'as Mum gets weaker, where would you like her to go?' or 'in the event she had a heart attack, do you want the ambulance to come, or are you happy for the nurses to come and give some pain relief?' Talking about what might happen is important because when the time comes, it is important that the family isn’t fighting and everyone has agreed about what to do.

    Registered Nurse with an Aboriginal Health Service Helen Leamy’s story. From Palliative Care for Aboriginal and Torres Strait Islander People magazine. (618kb pdf)
    Source: Kate Sullivan and Associates Pty Ltd on behalf of the Australian Government Department of Health and Ageing. Palliative Care for Aboriginal and Torres Strait Islander People. (618kb pdf) Canberra: Australian Government Department of Health and Ageing, Commonwealth of Australia; 2004. Page 20. Writer: Claire Colyer.
  • Both patients and staff spoke about the importance of trying to meet specific cultural and individual needs of patients, such as same-gender health carers for intimate care and working closely with patients, their families and communities in relation to death and dying.

    Clinical Services Coordinator recalls interviews with health staff and patients, from 'Managing two worlds together' (2.97MB pdf)
    Source: Kelly J, Herman K, Martin G, Wilden C, East T, Russell C, et al. Managing two worlds together: Stage 3: Improving Aboriginal patient journeys - Renal case studies. Melbourne: Lowitja Institute and Flinders University; 2015. Page 5.

Don't forget the simple things

There are some simple strategies that health services can implement quickly in order to enhance the physical environment to make it feel more culturally safe for Aboriginal and Torres Strait Islander patients and their families. [1,8] These include:
  • As a sign of respect, display the Aboriginal and Torres Strait Islander flags.
  • Displaying Aboriginal and Torres Strait Islander art work can make people feel more welcome in a space.
  • Windows that provide a view of a garden or the outside can be reassuring.
  • It is useful to have available brochures and resources that are designed for Aboriginal and Torres Strait Islander people.
  • Including an Acknowledgement of Country statement on service documentation can indicate your awareness and respect of Aboriginal and Torres Strait culture and history.
  • Find out if your health service or organisation has a Reconciliation Statement, and if so, familiarise yourself with it. Or, have a look at Palliative Care Australia's Reconciliation Action Plan, March 2018 – February 2020 (2.83mb pdf)
  • Acknowledge and participate in National Aboriginal and Islander Day Observance Committee (NAIDOC) Week (usually the first week in July).
  • Acknowledge and participate in National Close the Gap Day (March of each year).
  • Make sure that photos and videos of Aboriginal and Torres Strait Islander people are only used with informed consent from the appropriate person.
  • Find your local Aboriginal Community Controlled Health Services. The Australian Indigenous HealthInfoNet website provides an interactive map to search for Aboriginal and Islander Medical/Health Services by state/territory.
  • Encourage the involvement of local Aboriginal and Torres Strait Islander Health Workers and Liaison Officers with the Aboriginal and Torres Strait Islander patients who attend your health service.
  • Encourage the involvement of local elders with the Aboriginal and Torres Strait Islander patients in your health service.
  1. PEPA Project Team. Cultural considerations: Providing end of life care for Aboriginal peoples and Torres Strait Islander peoples. Barton ACT: Commonwealth of Australia; 2014.
  2. Arabena K. A guide to care for those with a terminal condition: Honouring the choices of Aboriginal and Torres Strait Islander people in the ACT community (751kb pdf). Canberra: ACT Health; 2006.
  3. Palliative Care Curriculum for Undergraduates (PCC4U). Caring for Aboriginal people with life-limiting conditions [Internet]. 2016 [cited 2020 Mar 17].
  4. Shahid S, Bessarab D, van Schaik K, Aoun S, Thompson S. Improving palliative care outcomes for Aboriginal Australians: service providers’ perspectives. BMC Palliat Care. 2013;12(1):26.
  5. McGrath P. The Living Model: An Australian model for Aboriginal palliative care service delivery with international implications (234kb pdf). J Palliat Care. 2010;26(1):59-64.
  6. National Palliative Care Program. Providing culturally appropriate palliative care to Aboriginal and Torres Strait Islander Peoples: Resource kit. Canberra: Commonwealth of Australia; 2004.
  7. Aboriginal and Torres Strait Islander Health Branch Queensland Health. Sad news, sorry business: Guidelines for caring for Aboriginal and Torres Strait Islander people through death and dying (453kb pdf). Qld: Queensland Health; 2015.
  8. Brooke NJ. Needs of Aboriginal and Torres Strait Islander clients residing in Australian residential aged-care facilities. Aust J Rural Health. 2011;19(4):166-70.
  9. Northern Sydney Local Health District (NSLHD). Didja know: Cultural information & communication guide (17.3MB pdf). Sydney: NSLHD; 2015.
  10. Waran E, O'Connor N, Zubair MY, May P. 'Finishing up' on country: challenges and compromises. Intern Med J. 2016;46(9):1108-11.
  11. Sajiv C. Cultural considerations when providing care to Aboriginal and Torres Strait Islanders (ATSI) opting for conservative care. Nephrology (Carlton). 2013 Apr 16. doi: 10.1111/nep.12080. [Epub ahead of print]
  12. Waran E, Wallace S, Dodson-Jauncey J. Failing to plan is planning to fail: advance care directives and the Aboriginal people of the Top End. Med J Aust. 2017;206(9):377-8.
  13. Shahid S, Bleam R, Bessarab D, Thompson SC. "If you don't believe it, it won't help you": use of bush medicine in treating cancer among Aboriginal people in Western Australia. J Ethnobiol Ethnomed. 2010 Jun 23;6:18.


Next: Changing Your Care Approach

Last updated 17 March 2020