Focus Topics

topic 2 | Activity 11: Barriers to and enablers of palliative care

Barriers

Although Aboriginal peoples and Torres Strait Islander peoples have distinct cultures, their shared experiences of historical and ongoing trauma have created shared barriers to accessing palliative care.

Lack of access to acceptable and appropriate palliative care services for Indigenous peoples is a key concern not just in Australia, but internationally as well. Despite being recognised as a priority group to receive palliative care (given the disproportionately high rates and severity of chronic disease), Indigenous people globally are among those least likely to receive adequate palliative care. In addition to this, the cultural differences around beliefs in relation to dying, death, serious illness, health and healthcare between Indigenous and non-Indigenous people mean that ensuring cultural respect and sensitivity in provision of palliative care is vital.1

A review of literature focusing on the key features of palliative care service delivery for Indigenous peoples in Australia, New Zealand, Canada and the United States describes the following needs, preferences, and barriers:1

Needs
  • Meaningful engagement and collaboration with communities before designing and implementing programs
  • Education and training for the Indigenous community and healthcare staff in palliative care.
Preferences
  • Living with family and within the community at end of life
  • Having families at the centre of decision-making processes
  • Being able to gather as a family
  • Being able to practise specific cultural ceremonies and rituals at the end of life
  • Having open and honest communication from healthcare staff who respect the individual’s choices and demonstrate compassion and kindness
  • Having access to Indigenous healthcare staff.
Barriers
  • Distance and affordability of services
  • Lack of culturally appropriate services
  • Difference between Western medical models and Indigenous cultures in understandings and priorities for end-of-life care
  • Disrespectful and racist treatment by healthcare staff
  • Poor communication of end-of-life care issues by healthcare staff
  • Hospital policies that restricted visitors, especially extended family gatherings
  • Misinformation and misunderstandings regarding palliative care.

Barriers in the Australian context:

Considerable discrepancies in health and life expectancy mean that Australian Indigenous peoples experience the death of family and community members far more frequently, and at much younger ages, than non-Indigenous Australians. The significant health inequalities as well as barriers to healthcare access are of particular importance in the context of palliative care.

Some of the barriers that have been identified include:

  • Lack of awareness / understanding of palliative care
  • Language and communication issues: reluctance to talk about dying and death; poor literacy / health literacy; lack of translated, culturally-appropriate resources
  • Poor access to professional interpretation services
  • Mismatching cultural, religious and/or health beliefs and preferences between individuals and service providers
  • Fear or mistrust of ‘Western’ medicine and/or healthcare providers and services
  • A preference for family-based or kinship-determined decision-making
  • Challenges accommodating cultural practices in palliative care settings
  • Lack of / late referral to, or initiation of, palliative care
  • Racism, discrimination (historical and current) and cultural stereotyping
  • Financial disadvantage.2

The barriers that have been identified here need to be carefully considered by health professionals and services in the provision of palliative care. Specific aspects relating to care provision are covered in Section 5 of this toolkit.

Key Video Resource – PCC4U/IPEPA Yarn: Barriers to accessing palliative care (3:36)

This video excerpt provides a perspective on the shared barriers experienced by Australian Indigenous peoples when it comes to accessing palliative care.3

Check the thinking points below for some questions to consider with regard to this video.

 

Enablers

Overcoming the barriers to palliative care that have been identified is possible through focus on some key enablers. In a similar way to how the barriers were described in Activity 2, enablers can also be described as approaches that target both the consumer, or Australian Indigenous peoples, and service-side, or health professionals and health services:4

Consumer-side enablers Service-side enablers
  • Awareness-building activities targeted at individuals and communities, focusing on what palliative care is and the available services and supports
  • A focus on building long-term relationships, and being inclusive and respectful of Aboriginal and/or Torres Strait Islander cultural practices
  • Strengthening the capacity and capability of families and communities to care for people at home.
  • Ensuring culturally-safe and responsive care in all health service interactions
  • Building the capacity of the non-Indigenous health workforce to provide culturally-responsive care
  • Employing Aboriginal and/or Torres Strait Islander health workers and practitioners in palliative care services
  • Building partnerships and networks between specialist palliative care, primary healthcare and communities.

Key Video Resource – PCC4U/IPEPA Yarn: Deep, genuine listening (2:05)

This video excerpt provides a perspective on the importance of deep, genuine listening in providing culturally-responsive palliative care for Australian Indigenous peoples.3

Check the thinking points below for some questions to consider with regard to this video.

 

Key Video Resource – Greg Chatfield’s Story: An Indigenous Palliative Care Journey (13:57)

Greg Chatfield “Chatty”, was a proud Aboriginal man with strong connections to Kamilaroi and Ngunnawal Country. He was diagnosed with motor neurone disease, a degenerative neurological condition, with limited life expectancy. He was initially very reluctant to engage with the palliative care service because of his past experience with institutions and mainstream health services, and because of his need to look after his mob as the Elder.5

Check the thinking points below for some questions to consider with regard to this video.

  1. View the PCC4U / IPEPA Yarning video resources, ‘Barriers to accessing palliative care’ and ‘Deep, genuine listening’. Identify practical ways through which you, as an individual health professional, can make a difference through the way you approach, communicate, accommodate, and build relationships and trust with Aboriginal and/or Torres Strait Islander people and their families.
  2. View the video ‘Greg Chatfield’s story’ and reflect on the following questions:
    • What were the barriers experienced by Chatty and his family with regard to accessing palliative care?
    • What influenced or enabled the family to access palliative care after their initial reluctance?
    • What benefits do Chatty and his family talk about from their experience of palliative care?
    • Consider the statement that Ros (palliative care nurse specialist) made, “Chatty said, ‘Thank you for making me feel safe’. I think for Chatty it was that he trusted me with cultural care as well. I didn’t pretend to know what I should or shouldn’t do, but I listened to him and he taught me what to do.” What was it about the approach of healthcare staff that supported Chatty’s feeling of safety in the palliative care service?
  1. Shahid, S., et al., Key features of palliative care service delivery to Indigneous peoples in Australia, New Zealand, Canada and the United States: a comprehensive review. BMC Palliative Care, 2018. 17(72).
  2. Australian Government Department of Health, Exploratory Analysis of Barriers to Palliative Care: Issues Report on Aboriginal and Torres Strait Islander Peoples. 2020.
  3. Palliative Care Curriculum for Undergraduates. 2021. PCC4U / IPEPA Yarning about palliative care for Aboriginal and Torres Strait Islander peoples (Playlist).
  4. Gwandalan National Palliative Care Project. 2021. eLearning Modules.
  5. PEPA Project Team. 2021. Greg Chatfield’s Story: an Indigenous Palliative Care Journey.