A key factor in enabling access for Australian Indigenous peoples to quality palliative care is supporting an understanding of palliative care that reinforces its holistic approach.
By viewing the World Health Organization (WHO) definition of palliative care alongside the National Aboriginal Community Controlled Health Organisation (NACCHO) definition of health, it is easy to see the similarities.
|WHO defines palliative care as…||NACCHO states that Aboriginal and Torres Strait Islander health is…|
|…an approach that improves the quality of life of individuals and their families facing the problems associated with life-limiting illnesses, through the prevention and relief of suffering by means of early identification and impeccable assessment and the treatment of pain and other problems, physical, psychosocial and spiritual.1 WHO||…not just the physical well-being of an individual but refers to the social, emotional and cultural well-being of the whole Community in which each individual is able to achieve their full potential as a human being thereby bringing about the total wellbeing of their Community. It is a whole of life view and includes the cyclical concept of life-death-life.2 NACCHO|
In both these definitions, the concept of health is one that focuses not just on physical, but also psychological, social, cultural, and spiritual. A palliative approach also includes the person’s right to choose to be an active participant in their care, which supports the right to self-determination.
It is very important for everyone to be aware, and for Australian Indigenous peoples to understand that palliative care is not a new way of knowing, being and doing; it is the traditional way and view of all aspects of health and wellbeing (as considered in Section 2) but given a Western, biomedical term. This video from the IPEPA Project, helps to develop an understanding of palliative care from an Aboriginal and Torres Strait Islander perspective.
To view more resources from the IPEPA Animations project, refer to the related links section below.
There may not be words in traditional Australian Indigenous languages for ‘palliative care’, but there are ways of speaking about caring for Elders and those at the end of life that are used to help build understanding in communities and health services about what palliative care is. These are closely linked to the spiritual and cultural belief of life as a continuum – Life-Death-Life.
For example, Wiradjuri people say Winhanganhanhal to those who have lost a loved one. It means ‘remember, think, know’ – if you are remembering and thinking about the person then they are never really lost to you.
In another example, when Darug Elders (in Western Sydney) were asked what to call palliative care. The word they suggested was Ngalawan, which means ‘they live, they remain’.
A living model for Aboriginal and/or Torres Strait Islander palliative care
Access this PDF resource to view the diagram and description of the ‘living model’:3
Eight key principles of palliative care were identified in the development of this model and affirmed by experts in Aboriginal health as foundation principles to underpin the model:
- Cultural safety
- The importance of trust
- Humane, non-judgemental care
- Seamless care
- Emphasis on living
- Cultural respect.4
A static model … [should not] be imposed on services or communities but rather a living, flexible model is required to assist with service delivery and health policy. McGrath5
An example of this kind of model in practice can be seen in the Winnunga Care and Support Clinic at the Winnunga Aboriginal Community Health Service in ACT. This involves a regular meeting between the clinic healthcare staff and visiting palliative care team. Together they identify deteriorating patients with life-limiting illness who are approaching end of life. Winnunga then continue to care for the patient and family with the support of the specialist palliative care team. If referral to the specialist home-based or inpatient team is needed, Winnunga remain part of the journey and are involved in the care that is provided, including joint home visits, family meetings and goals of care planning. This model has been described as a ‘fluid and evolving model of care, developed by listening to and learning from the community’.6
The life expectancy for Australian Indigenous peoples is approximately 10 years lower than non-Indigenous Australians, with the leading causes of death being:
- Coronary heart disease
- Lung cancers
- Chronic obstructive pulmonary disease (COPD)
Diabetes and suicide were not in the five leading causes of death for non-Indigenous Australians, which were coronary heart disease, dementia including Alzheimer’s, cerebrovascular disease, lung cancer, and COPD.7
This means that, apart from suicide deaths, the majority of Aboriginal and/or Torres Strait Islanders have an end-of-life trajectory that follows a chronic disease pattern. In this pattern, people experience a gradual decline in health with intermittent acute episodes. Such episodes often require hospitalisation, are accompanied by a significant risk of dying, and usually result in a decline in function.
Refer to PCC4U Core Module 1: Activity 7 to review information on illness trajectories.
It is important to understand that the impact of multiple hospitalisations and the experience that Aboriginal and/or Torres Strait Islander peoples have interacting with various members of the health workforce can have a significant influence on quality of life during the end-of-life journey. Emphasis on culturally-responsive communication, multidisciplinary teamwork and symptom management are key to providing quality, family-centred palliative care.
- Consider the ‘living model’ for Aboriginal and/or Torres Strait Islander palliative care described in this section and reflect on three elements that you, as an individual health professional, can improve to better support Australian Indigenous peoples affected by life-limiting illness. Make some notes on your reflections or discuss with a friend / colleague.
- In the next conversation you have with an Aboriginal and/or Torres Strait Islander person or family you are providing care for, ask this question, “What specific values or cultural considerations would you like us to be mindful of while you are in our care?”. Listen well to their response.
- World Health Organization. Palliative Care. 2020; Available from: https://www.who.int/news-room/fact-sheets/detail/palliative-care.
- National Aboriginal Community Controlled Health Organisation (NACCHO). Aboriginal Community Controlled Health Organisations. 2021; Available from: https://www.naccho.org.au/acchos.
- Indigenous Program of Experience in the Palliative Approach (IPEPA) Project Team, IPEPA Culturally-responsive care workshop presentation. 2020, QUT.
- McGrath, P. and H. Holewa, ‘The Living Model’: A resource manual for Indigenous Palliative Care Service Delivery. 2006, Qld, Australia: Researchmann.
- McGrath, P., The Living Model: An Australian Model for Aboriginal Palliative Care Service Delivery with International Implications. Journal of Palliative Care, 2010. 26(1): p. 59-64.
- IPEPA Project Team, Aboriginal and Torres Strait Islander Stakeholder Engagement Kit 2020-2023. 2021, Indigenous Program of Experience in the Palliative Approach.
- Australian Institute of Health and Welfare, Australia’s Health 2020. 2020.