Aboriginal and Torres Strait Islander Peoples
Warning: Aboriginal and/or Torres Strait Islander Peoples should be aware that this page contains links to images/voices/names of people who have passed away. It also deals with information and discussion around “death and dying”, “finishing up”, “sorry or sad business” or “sorry camps”, and “palliative care”.
Aboriginal and Torres Strait Islander people and culture are diverse and dynamic, representing many nations and language groups. Indigenous Australians have different backgrounds, traditions, and life experiences, living in both urban and non-urban regions. In the 2016 Australian Census, Aboriginal and Torres Strait Islander people made up approximately 2.8% of the Australian population. The median age of the Aboriginal and Torres Strait Islander population was 23, with 17% of the population aged 50 years and over in 2016. About 90% percent identified as Aboriginal, 6% identified as Torres Strait Islander and 4% identified as both Aboriginal and Torres Strait Islander.
Aboriginal and Torres Strait Islander Australians have lower life expectancies and poorer health outcomes than non-Indigenous Australians, particularly from chronic disease. Aboriginal and Torres Strait Islander people aged 50 and over are considered ‘aged’ or ‘older’. Aboriginal and Torres Strait Islander Australians are often disadvantaged by historical, economic, cultural, social and educational factors, and are more than twice as likely as non-Indigenous Australians to need help with core daily activities due to disability, according to the Australian Institute of Health and Welfare. Inter-generational trauma caused by removing children from families, exists in many families and communities. Inequalities exist for Aboriginal and Torres Strait Islander people accessing health services in both urban and remote areas. These barriers to service and health care access require solutions and policies to address this inequity.
Some of the known challenges to improving health outcomes are:
- community racism
- institutional racism
- cultural unsafe services and health professionals
- inter-generational trauma
- social exclusion
- housing instability and lower home ownership
- lower education
- lower English language proficiency
- language diversity
- family breakdown and cultural dispossession (Stolen Generations)
- geographic isolation
- transport issues
- poor internet access
- workforce and employment issues
- poor income and high living costs
- low health literacy
- higher rates of health risk factors and comorbidity
- health service access barriers
All Australians have the right to access health care that meets their cultural and linguistic needs. but many Aboriginal and Torres Strait Islander Australians experience a high number of these challenges all at once, magnifying their experience of disadvantage.
Aboriginal and Torres Strait Islander Australians often experience complex disadvantage and overlapping forms of discrimination (intersectional risk) compared to non-Indigenous Australians. Aboriginal and Torres Strait Islander people are more likely to commit suicide, be a victim of crime, and be in prison than non-Indigenous Australians. Vulnerabilities are enhanced where Aboriginal and Torres Strait Islander people also belong to other marginalised groups (for example, care leavers, or those with a disability or dementia).
Aged care considerations for Aboriginal and Torres Strait Islander Australians
Overall, there is a lack of information on aged care service provision for Aboriginal and Torres Strait Islander Australians. Aboriginal and Torres Strait Islander Australians, including those living in urban areas, do not have equal access to aged care and health care services. Major barriers to accessing services exist in both rural and urban areas, particularly services that provide culturally appropriate care. Aboriginal and Torres Strait Islander people can access government-funded aged care services when aged 50 years or older, compared with access at 65 years or older for non-Indigenous people. This is consistent with the poorer health outcomes and lower life expectancy Aboriginal and Torres Strait Islander Australians experience. According to AIHW (2018) data around a third of Aboriginal and Torres Strait Islander Australians in permanent or respite residential care in 2004 were under 65 years (compared with fewer than 5% of non-Indigenous Australians) and many Aboriginal and Torres Strait Islander Australians receiving home-based aged care packages were under 65 years.
Many Aboriginal and Torres Strait Islander Australians have negative experiences accessing mainstream health care due to institutional racism and inter-generational trauma. Health professionals and care workers in the aged care sector must provide culturally safe care that is tailored to the needs of the people they care for to minimise the effects of culturally unsafe practices, institutional racism and inter-generational trauma. Care must respond to and avoid the real risk of re-traumatising survivors, particularly for the Stolen Generation. For many Aboriginal and Torres Strait Islander people, living ‘on Country’ is important and aged care services should recognise and where possible deliver services in the place of choice. You may also like to explore options available through the Aboriginal and Torres Strait Islander Flexible Aged Care Program.
My Aged Care provides videos and other resources for providing care to Aboriginal and Torres Strait Islander clients. My Aged Care can also connect Aboriginal and Torres Strait Islander people to an Indigenous interpreting service to provide aged care information in a person's preferred language. To access an indigenous interpreter call My Aged Care on 1800 200 422 and ask for an interpreter in your client's preferred language.
What is cultural safety and why is it important to Aboriginal and Torres Strait Islander Australians?
Cultural safety represents a philosophy of practice regarding how health professionals treat their clients and patients, and is defined by the recipients of care or services. Cultural safety takes into account peoples’ unique needs and requires professionals to undertake ongoing self-reflection and cultural self-awareness. Providing culturally safe health care is the practice of respecting and supporting an individuals’ identity and well-being as defined by the person themselves. This is why having meaningful conversations with clients and their families about their culture, values and beliefs is important to ensure that their care is appropriate. Cultural safety education and training for staff and supervisors can enhance communication between health care, aged care and palliative care staff, and Aboriginal and Torres Strait Islander clients and residents. Many Aboriginal Community Controlled Health Organisations and associated Aboriginal and Torres Strait Islander services can provide cultural safety training for health care organisations. CATSINaM have released a Cultural Safety Position Statement, and further elaborate on key terms and concepts. HealthInfoNet have more information on cultural safety for health professionals.
Cultural safety can reduce inequalities in health care access and delivery of high quality care. Within a cultural safety approach, models of health can be decolonised, racism can be challenged at personal and institutional levels, and white privilege and social determinants of health can be acknowledged through discussion, dialogue, and power sharing, fostering trust in health provision. Unsafe cultural practice compromise and diminish cultural identity and well-being, causing unnecessary distress for Aboriginal and Torres Strait Islander people, their families, carers and communities. Previous negative experiences through an individual’s lifetime and throughout preceding generations mean Aboriginal and Torres Strait Islander Australians often do not trust information from health organisations. They may fear their personal stories will be lost or stolen, due to prior experiences of trauma. Beliefs about health and illness among older Indigenous Australians can differ from Western views. There are useful case studies provided by the Department of Health Actions to support older Aboriginal and Torres Strait Islander people – A guide for aged care providers. Palliative Care Curriculum for Undergraduates (PCC4U) provides modules on communicating with and caring for Aboriginal people.
Cultural safety is essential to providing person-centred care. The new Aged Care Standards require a person-centred approach, respecting consumer dignity and choice. Aged care providers and staff should understand, respect and support the role of Elders, family and community in Aboriginal and Torres Strait Islander cultures. It can be challenging to provide aged care and palliative care that recognises and supports Aboriginal and Torres Strait Islander people who have experienced complex disadvantage. The following strategies and considerations have been provided by Aboriginal and Torres Strait Islander organisations as ways to start to foster culturally safe and responsive aged care environments for Aboriginal and Torres Strait Islander clients and residents:
For the individual:
- reflect on your own cultural identity, beliefs and values (as these factors influence the care you provide).
- acknowledge assumptions, lived experiences, different conceptions of health, and the historical context of illness, racism, and power inequalities in our health services.
- avoid questioning someone’s Aboriginal and/or Torres Strait Islander background (e.g. ‘You don’t look Aboriginal’). Recognise that cultural stereotyping can cause offense and lead to incorrect assumptions about patient and family needs.
- consider the cultural factors and life experiences which may be responsible for challenging behaviours. For example; some issues or conversations may be considered as mens or womens business or some health practices may be considered as having important spiritual connections and the client may consider them inappropriate.
- understand and value informal caregivers. Spiritual and traditional healers can also play an important role in Aboriginal and Torres Strait Islander peoples’ well-being.
- recognise that beliefs about health and illness among Aboriginal and Torres Strait Islander people can differ from Western views. All people, including clients and staff, have unique understandings based on their history and experiences. Ask about and support clients’ spiritual, cultural and religious beliefs.
- ensure the availability of interpreters as required.
- talk with Aboriginal and Torres Strait Islander clients about any literature, artworks, displays, imagery, books, videos, flags, posters, and décor you may have in your service. Storytelling plays a big role in Aboriginal and Torres Strait Islander culture.
- implementing a Reconciliation Action Plan (RAP) in your service will assist greatly in ensuring you meet the person-centred requirements in the new Aged Care Standards. Click the link above for more information on how to go about implementing a RAP in your service.
- make sure you have on display or available literature, arts, imagery, books, videos, flags, posters, and décor that are meaningful to Aboriginal and Torres Strait Islander people. If you don’t know what they are, make it someone’s responsibility to ask.
- ensure cultural visibility by making physical environments and imagery specific and relevant to local groups.
- employ Indigenous staff where possible to facilitate a culturally safe service.
- be supportive of visits and involvement from families and communities.
- recognise and celebrate significant historical and annual events.
- calendar appropriate national or state cultural events, activities and hobbies, and support participation in them.
- provide appropriate food (e.g. bush tucker).
- make sure important care information is available in plain language in a variety of media (written, video, pictorial). Many older Aboriginal and Torres Strait Islander Australians have English as their fourth or fifth language and may not be able to read English.
- provide opportunities for clients to re-visit Country for spiritual and emotional well-being.
- partner and collaborate with local Aboriginal and Torres Strait Islander organisations. Such organisations are often happy to provide opportunities for mainstream services to learn more about Aboriginal and Torres Strait Islander perspectives on health and well-being.
- develop and deliver more holistic services in line with Aboriginal and Torres Strait Islander models of health. Aboriginal Community Controlled Health Organisations in your state or territory can help you to locate appropriate resources and services to facilitate this. For more information, visit National Aboriginal Community Controlled Health Organisation (NACCHO), and search for state-based resources.
Cultural safety is also relevant to Aboriginal and Torres Strait Islander health professionals. Non-Indigenous staff must address how they create a culturally safe, racism-free work environment for their Aboriginal and Torres Strait Islander colleagues.
Palliative care and advance care planning considerations for Aboriginal and Torres Strait Islander Australians
There is limited research and data on palliative care services for Aboriginal and Torres Strait Islander Australians. Palliative care services are more accessible in urban than rural areas. For Aboriginal and Torres Strait Islander people in rural and remote areas, practical barriers and issues exist in the provision of appropriate palliative services, including:
- unreliable power supplies
- appropriate settings
Mainstream palliative care services are largely culturally disconnected from Aboriginal and Torres Strait Islander communities, further adding to access barriers, isolation and limiting social participation. The Department of Health has released an exploratory analysis of barriers to palliative care and advance care planning report on people from Aboriginal and Torres Strait Islander backgrounds, which contains approaches for improving access and quality of care for this group. It is important that providers foster respectful, honest, trusting and productive relationships with Aboriginal and Torres Strait Islander clients and residents. These websites provide links to resources on conversation starters and digital discussion starters for additional support when working with Aboriginal and Torres Strait Islander people.
Palliative care must be provided recognising the need for cultural safety and local accessibility, as Aboriginal and Torres Strait Islanders people may feel a sense of cultural isolation and fear when accessing mainstream services. In addition to physical well-being Aboriginal and Torres Strait Islander views of health often extend to the social, emotional and cultural well-being of the whole community. Concepts of life and death are often interwoven and interrelated. It is important to recognise that there are often cultural differences in the way illness and death are dealt with and understood by Aboriginal and Torres Strait Islander Australians, compared to non-Indigenous Australians. Australian General Practice Accreditation Limited (AGPAL), in partnership with Palliative Care South Australia and with funding from the Federal Department of Health co-developed a suite of tailored education and training materials to support cultural safety within palliative care services for Aboriginal and Torres Strait Islander peoples. These resources are provided to support increased capacity for caregivers of Aboriginal and Torres Strait Islander peoples during their palliative and end-of-life journey.
Caring for family members is an important responsibility among Aboriginal and Torres Strait Islander people. Families often want to care for individuals ‘on Country’ rather than in hospital settings. ‘On Country’ is a term that describes the land where an individual or their family are from; the place where they connect with their culture, traditions and lore. Culture and family are central to Aboriginal and Torres Strait Islander peoples’ ways of living. For Aboriginal and Torres Strait Islander Australians, family may be distantly related, or may be related through traditional kinship or cultural groupings, rather than blood relatives. It is necessary to be aware of these relationships to ensure appropriate communication and information is provided to the family that an Aboriginal or Torres Strait Islander person has chosen to be present, and responsible in co-partnering with the client or resident in their care.
Some considerations for palliative care among Aboriginal and Torres Strait Islander communities:
- develop models of care with Aboriginal and Torres Strait Islander people to better address their palliative care needs at their preferred place of care with their primary care providers such as telehealth consultation with specialist palliative care services.
- consider the health literacy of your clients. Many Aboriginal and Torres Strait Islander people speak one or multiple Aboriginal or Torres Strait Islander languages and may not be proficient in English or the way in which mainstream services manage and treat health issues.
- acknowledge the history and heritage of Aboriginal or Torres Strait Islander Australians, and common experiences with loss and grief. Earlier life experiences often compound these experiences for Aboriginal or Torres Strait Islander people. Knowing about the individual stories of your clients can greatly assist in providing person-centred and trauma informed care.
- returning to Country is important for many Aboriginal or Torres Strait Islander Australians at the end of life. Ask about each individuals’ preferred place of death early in the process, to plan for or facilitate a return to traditional lands to die if requested. The place of dying and death is culturally and spiritually significant for many Aboriginal or Torres Strait Islander people. Ask your clients how they would like family to be involved.
- include family as chosen by the individual in communications regarding aged care or palliative care options, or other important information or decisions. Kinship-determined decision-making is often preferred over individual decision-making.
- family may wish to visit patients during the palliative period, or post-death. Where possible, do not limit the number of visitors or the hierarchical relationship of family members. There may be many nieces and nephews and cousins involved. Kinship lines in Aboriginal or Torres Strait Islander families are constructed differently to many non-Indigenous families.
- terms such as ‘death’ and ‘dying’ may contribute to a culturally unsafe environment for clients and families. More appropriate terms may include ‘unwell’, ‘very sick’, or ‘finishing up’. If you are uncertain, your local Aboriginal and Torres Strait Islander health clinic or Aboriginal liaison officers/Aboriginal health workers can assist in working through some of these cultural issues.
- direct questioning, prolonged eye contact and care provided by people of the opposite sex can be considered inappropriate in some Aboriginal and Torres Strait Islander cultures. Being conscious of how you talk with Aboriginal clients is useful to try and bridge some cultural differences.
- services and staff should be accommodating of particular requirements and preferences Aboriginal and Torres Strait Islander clients may have in their approach.
- collaborative relationships between clients and their families, staff from various disciplines, health workers, and interpreters are essential. Aboriginal liaison officers and Aboriginal health workers can be vital to the palliative care team’s provision of care.
- culturally safe spaces must be made available to allow Aboriginal and Torres Strait Islander families and communities to come together to celebrate or grieve. A RAP can help you achieve this goal.
- there are specific Aboriginal and Torres Strait Islander mourning and grieving customs, and ceremonies that assist the spirit to leave the physical body and return to its sacred place.
- death and dying rituals vary widely among Aboriginal and Torres Strait Islander families and communities. Talking to the person, their family or an Aboriginal liaison officer/Aboriginal health worker about the individual’s traditions, values and cultural practices is necessary to integrate their beliefs into the care provided during their end-of-life transition.
Service delivery and models of care must be tailored to the needs and preferences of individuals from specific communities. Aboriginal and Torres Strait Islander values of kinship, culture and community are consistent with the values of underlying palliative care. Holistic, family-centred models of care should underpin culturally safe palliative care provision. Person-centred approaches to care for Aboriginal and Torres Strait Islander Australians can be found on the CareSearch website. The following case study on palliative care in remote settings and tips on Talking Together may also be useful. The Australian Indigenous HealthInfoNet outlines considerations for Aboriginal and Torres Strait Islander clients at the end of life.
Quality end of life care for Aboriginal and Torres Strait Islander Australians needs to be based on equity, autonomy, empowerment, trust, non-judgmental care, cultural respect and safety, and collaboration to facilitate person-centred care as per the Aged Care Standards. Collaboration is essential in communicating and building relationships to improve Aboriginal and Torres Strait Islander palliative and end of life care service delivery.
Advance care planning does not appear to be common within Aboriginal and Torres Strait Islander populations, due to taboos or unwillingness to talk about death and dying. Fostering the practice of ’advance care yarning’ and ‘family case conferencing’ can be helpful. These approaches involve including patients and their broader family in decisions about culturally appropriate care. There are case studies within the National Palliative Care Program’s Providing Culturally Appropriate Palliative Care to Aboriginal and Torres Strait Islander people – Practice Principles document. Caring for your mob at the end of their life (1.3MB, pdf) is a Department of Health resource which introduces palliative care, end of life care and advance care planning as concepts for Aboriginal and Torres Strait Islanders. Advance Care Planning Australia have information about advance care planning for Aboriginal individuals.
Palliative Care Australia introduced new video resources ‘Discussing Choices – Indigenous Advance Care Plans’, and 'Having a Yarn - Final Footprints: My Culture, My Kinship, My Country' encouraging conversations around death and dying, and end-of-life care within the context of Aboriginal and Torres Strait Islander Peoples and communities.
For more information, visit the Lowitja Institute, Indigenous Allied Health Australia Ltd (IAHA), Close the Gap, palliAGED, and CareSearch.