Returning to Spirit
It is widely acknowledged that culturally appropriate and holistic health delivery systems improve health outcomes.
Aboriginal and Torres Strait Islander people and communities are diverse. This diversity includes distinct language, kinship and cultural traditions, religious beliefs, family responsibilities and personal histories and experiences. Importantly, this diversity also extends to the health needs of Aboriginal and Torres Strait Islander people and community.1
Evidence shows that Aboriginal and Torres Strait Islander people are more likely to access health services where service providers communicate respectfully, build good relationships, have an awareness of the underlying social issues, as well as some understanding of culture, and where Aboriginal and Torres Strait Islander people are part of the health care team.2
Given the cultural sensitivities surrounding death for Aboriginal and Torres Strait Islander peoples, it is important that cultural beliefs and practices are acknowledged and accommodated during the palliative and end-of-life care journey.
When Aboriginal and Torres Strait Islander peoples are diagnosed with a life-limiting illness, or are approaching the end of their life, they should be able to access quality palliative and supportive care that is consistent with their wishes. By engaging in culturally appropriate, safe and sensitive palliative care communication with the Aboriginal and Torres Strait Islander members of your community, you can provide support in a way that meets the needs of each individual.
Cultural safety is everyone’s business!
A range of materials exists to assist you in your lifelong cultural learning, including education opportunities, resources and reports.
Gwandalan National Palliative Care:
The Gwandalan Project does not address clinical palliative care content but rather, supports the provision of culturally safe and responsive palliative care by upskilling frontline staff to contextualise care for Aboriginal and Torres Strait Islander peoples, and deliver services in a way which supports a good ‘finishing up’.
Education and training materials for the Gwandalan Project aim to support relationships between service providers, frontline staff and Aboriginal and Torres Strait Islander Communities through cross-cultural education and the sharing of knowledge. This will be achieved through the provision of education and training to support increased capacity in those who care for Aboriginal and Torres Strait Islander peoples during their palliative and end-of-life journey.
Access to all Gwandalan education and training materials is free of charge, thanks to funding by the Australian Government under the Public Health and Chronic Disease Care Grant, National Palliative Care Projects.
Final Footprints: My Culture, My Kinship, My Country:
(approximately 12 minutes). Said in their own words, four (4) interviews are held with Aboriginal and Torres Strait Islander people representing their communities outlining different perspectives on ‘palliative care’ and death and dying’. Nations represented are Torres Strait Islands, Kaurna Narungga, Yawuru, and Narungga. This video resource was developed in collaboration with Palliative Care South Australia.
Having a Yarn – Final Footprints: My Culture, My Kinship, My Country:
(approximately 60 minutes). ABC presenter Dan Bourchier launches the video Final Footprints: My Culture, My Kinship, My Country (included in this video) and hosts a discussion with three highly esteemed Aboriginal people who have both ‘lived experience’ and work professionally within Aboriginal and Torres Strait Islander communities to explore the importance of palliative care to our First Nations’ peoples.
Indigenous Program of Experience in the Palliative Approach (IPEPA)
IPEPA is a grassroots approach to breaking down the barriers to palliative care for Aboriginal and Torres Strait Islander peoples across Australia. The program seeks to build the capacity of our Aboriginal and Torres Strait Islander workforce to deliver palliative care, and also to support the culturally-responsive capabilities of mainstream service providers to provide holistic and safe palliative care to Aboriginal and Torres Strait Islander peoples. Click for link
New IPEPA palliative care videos:
Indigenous Program of Experience in the Palliative Approach (IPEPA) have five new videos which explore understanding around palliative care, and what happens when diagnosed with a life-limiting illness. These include:
- What is palliative care?
- Understanding trajectories of serious illness
- Loss, grief and healing
- Pain management
Palliative Care Curriculum for Undergraduates PCC4U (new toolkit):
Topic 2 (Australian Indigenous Peoples) and Topic 4 (Culture-centred Care) may be especially useful. Click for link
Also the newly-released Focus Topic 2 (Caring for Australian Indigenous peoples affected by life-limiting illness), which will help learners to develop the skills needed to provide quality care, across various settings, to Aboriginal and/or Torres Strait Islander people with life-limiting illness, and their families and communities. Click for link
caring@home for Aboriginal and Torres Strait Islander Families
The aim of this project is to support the provision of palliative care at home for Aboriginal and Torres Strait Islander people. When care at home is preferred, it can be provided to help connect family, culture, community, country and the spiritual wellbeing of Aboriginal and Torres Strait Islander people.
Includes resources to assist Aboriginal and Torres Strait Islander people who choose to be cared for and remain at home for the final stage of their life-course. Click for link
Palliative Care Australia (PCA):
Palliative Care Australia (PCA) aims to improve the quality of life of all Australians living with a life-limiting illness/condition and their families, and represents all who work in palliative care services. They have developed resources to assist the Aboriginal and Torres Strait Islander Peoples, their communities, and health professionals working within communities to ensure approaches and practises are culturally safe and respectful. Click for link
‘Into the Dreaming’: A Palliative Care Guide for Aboriginal and Torres Strait Islander people through ‘Sorry Business’
This resource kit was developed in NSW to provide culturally sensitive, respectful, responsive and appropriate methods of communication when dealing with health care and Sorry Business with Aboriginal & Torres Strait Islander people. Intended to help local Aboriginal communities feel more welcome in palliative care settings and start inclusive and culturally appropriate conversations about end of life planning. Click for link
IPEPA Resource Directory: IPEPA Culturally-Responsive Palliative Care Workshop
Resources include reading materials, videos and activities Click for link
Australian Indigenous HealthInfoNet
The Australian Indigenous HealthInfoNet Palliative care and end-of-life portal is designed to assist the health workforce who provide care for Aboriginal and Torres Strait Islander people, their families and communities. It seeks to support both clinicians and policy-makers in accessing resources, research and projects on palliative and end-of-life care for Aboriginal and Torres Strait Islander people. Click for link
CareSearch (Flinders Uni SA)
This site brings together a range of resources and information to help the health care workforce and carers in providing palliative care for Aboriginal and Torres Strait Islander peoples, acknowledging that culturally safe and responsive care is an essential part of good care. Click for link
Queensland Centre for Palliative Care Research & Education (CPCRE)
CPCRE aims to increase health professionals’ understanding of the needs of Aboriginal and Torres Strait Islander patients and families, and increase knowledge about palliative care amongst Aboriginal and Torres Strait Islander Health Workers, Liaison Officers and other health professionals. Click for link
Palliative Care Queensland
Includes Queensland Health’s ‘Sad News, Sorry Business: Guidelines for caring for Aboriginal and Torres Strait Islander people through death and dying’, researched and developed by the Aboriginal and Torres Strait Islander Cultural Capability Team. Click for link
Also includes a toolkit aimed at providing quality and user-friendly resources to support appropriate palliative care provision for Aboriginal and Torres Strait Islander peoples.
The Yarning about Sad News and Sorry Business – An Engagement and Consultation Toolkit was developed in collaboration with Health Consumers Queensland, gathered insights and perspectives from Aboriginal and Torres Strait Islander peoples living in Queensland on engagement and consultation processes in relation to palliative care. Click for link
palliAGED Palliative Care Aged Care Evidence – Aboriginal and Torres Strait Islander peoples
Includes resources which may be useful to those providing care to Aboriginal and Torres Strait Islander peoples, noting that Aboriginal and Torres Strait Islander people are a diverse group of peoples, made up of many different nations and language groups. Aboriginal and Torres Strait Islander culture is a living culture, made up of both contemporary and traditional practices. Click for link
Aboriginal Health and Medical Research Council of New South Wales (AH&MRC)
The AH&MRC Resource Centre contains the downloadable My Journey to Dreaming Diary, which can be used by patients to keep personal and medical information in one place. Click for link
And also the Journey to Dreaming Toolkit, which to provide high quality information to help Aboriginal and Torres Strait Islander families and their healthcare workers provide family-centred palliative and end-of-life care for a loved one. It also contains some important information that might be useful for individuals needing end-of-life care. Click for link
Australian Government Department of Health Report (2019) on barriers and enablers to palliative care for Aboriginal and Torres Strait Islander people
Australian Institute of Health and Wellness (AIHW) Regional insights for Indigenous Communities, with statistics available by community/region
AIHW data (Sept 2021) by Primary Health Network (PHN) on Practice Incentive Program Quality Improvement (PIP QI) data for Aboriginal and Torres Strait Islander people attending general practices
- National Cultural Respect Framework for Aboriginal and Torres Strait Islander Health 2016-2026
- Australian Government, Department of Health 2014, Aboriginal and Torres Strait Islander Health Curriculum Framework, Canberra: Commonwealth of Australia