Culturally Safe Palliative Care and Advance Care Planning (ACP) for Aboriginal and Torres Strait Islander Peoples

Definition

Culturally safe palliative care is care that is:

respectful
trauma-informed
relationship-based
community-centred
spiritually and culturally responsive

It recognises that experiences of illness, dying, grief, family, spirituality, and decision-making may differ significantly between communities and individuals.

The aim is:

“care with” rather than “care for”
supporting autonomy, kinship, Country, identity, and community connection
reducing fear, mistrust, and institutional trauma
improving dignity, trust, and culturally meaningful end-of-life care.

Why Culturally Safe Care Matters

Healthcare experiences occur within broader historical, social, and cultural contexts.

Many Aboriginal and Torres Strait Islander peoples may associate healthcare systems with:

colonisation
forced removals
racism and discrimination
institutional trauma
family separation
deaths away from Country
exclusion from decision-making.

This may contribute to:

fear and mistrust of hospitals
delayed presentations
disengagement from healthcare
reluctance to discuss ACP or end-of-life care
distress regarding dying away from family or Country.

Culturally safe care aims to:

restore trust
preserve dignity and identity
reduce retraumatisation
support spiritual wellbeing
align care with patient, family, and community values.

Core Principles

Principle	Key Components	Examples
Cultural safety	Respect identity, spirituality, trauma history, community structures	Involve Aboriginal Liaison Officers; avoid stereotyping
Relationship-based care (“yarning”)	Trust-building, listening, conversational approach	Longer consultations; avoid rushed discussions
Shared decision-making	Collaborative care planning	“What matters most to you?”
Family and kinship-centred care	Recognise collective decision-making	Include Elders and key kinship members
Connection to Country	Respect cultural/spiritual importance of Country	Support return to Country if possible
Trauma-informed care	Recognise effects of racism and institutional trauma	Avoid coercive or paternalistic communication
Holistic care	Physical, emotional, spiritual, social, cultural wellbeing	Integrate symptom and spiritual support
Flexible communication	Plain language, culturally appropriate terminology	“Planning ahead” rather than “advance directive”
Respect for Sorry Business	Acknowledge mourning practices and sensitivities	Respect requests regarding names/images of deceased persons
Continuity of care	Long-term trusted relationships	Consistent GP and community team involvement
Accessible care	Address transport, literacy, geographic barriers	Outreach, telehealth, medication delivery

“Care With” Rather Than “Care For”

“Care For”

Traditional biomedical models may unintentionally:

prioritise institutional processes
position clinicians as authority figures
focus narrowly on disease
overlook family and community structures.

This may feel:

paternalistic
disempowering
culturally unsafe.

“Care With”

“Care with” emphasises:

partnership
collaboration
listening first
shared decision-making
recognising the patient and community as experts in their own lives and culture.

Practical examples:

Less Helpful	More Culturally Safe
“This is the treatment plan.”	“Let’s talk about what matters most to you.”
Clinician-led decisions	Shared decisions
Disease-focused	Person, family, culture, and spirit-focused
Rushed consultations	Relationship-building and yarning

Autonomy, Kinship, and Decision-Making

Autonomy may be relational and family-connected rather than purely individualistic. Decision-making may involve:

family
Elders
kinship systems
community consultation
spiritual obligations.

Important considerations:

avoid assumptions regarding “next of kin”
ask who should be involved in discussions
allow time for family consultation
recognise collective decision-making.

Helpful questions:

“Who are the important people involved in decisions?”
“Who would you like included in conversations?”
“Is there someone you trust to help make decisions if needed?”

Connection to Country

Country may represent:

spirituality
identity
ancestry
belonging
healing
family and cultural continuity.

Dying away from Country may be deeply distressing.

Consider:

preferred place of care
returning closer to home/community
outreach palliative care
transport barriers
cultural ceremonies and spiritual practices.

Helpful questions:

“Where do you feel safest and most comfortable?”
“Is being on Country important to you?”
“Are there cultural practices we should support?”

Communication Considerations

Principles

Build trust before sensitive discussions
Use active listening and yarning approaches
Ask permission before discussing prognosis or ACP
Use plain, gentle language
Avoid assumptions about beliefs or family structures
Allow silence and reflection
Check understanding safely
Involve trusted supports where appropriate.

Less Helpful vs More Culturally Safe Language

Less Helpful	More Culturally Safe
“Terminal illness”	“Serious sickness”
“End-of-life planning”	“Planning ahead”
“Do you want resuscitation?”	“What would matter most if health became very sick?”
“Who is next of kin?”	“Who are the important people involved in decisions?”

Language Around Death and Dying

Direct discussion of death may be culturally sensitive or perceived as spiritually unsafe in some communities.

Preferred phrases may include:

Phrase	Meaning / Context
Sorry Business	Mourning, funerals, cultural grieving obligations
Sad Business	Grief and community mourning
Finishing up	Approaching end-of-life
Final footsteps / footprints	End-of-life journey
Journey / pathway	Illness transition
Going back home	Returning to Country or ancestors
Going to the Dreaming	Spiritual return connected to Dreaming beliefs

Using culturally appropriate language may:

reduce distress
improve trust
facilitate ACP discussions
improve engagement with palliative care services.

Advance Care Planning (ACP)

ACP should be:

gradual
relationship-based
flexible
culturally adapted
revisited over time.

Key Components

Explore Values and Goals

Discuss:

what matters most
cultural and spiritual priorities
preferred place of care
fears about illness or hospitalisation
quality of life goals.

Identify Decision-Makers

Clarify:

family spokespersons
substitute decision-makers
involvement of Elders/community supports.

Discuss Medical Preferences

Explore preferences regarding:

hospital vs home/community care
symptom management
resuscitation
transfer preferences
feeding/hydration
culturally important practices.

Document and Share Wishes

May include:

Advance Health Directive
Statement of Choices
other jurisdiction-specific ACP documentation.

Community Supports and Services

Aboriginal Community Controlled Health Services (ACCHSs)

Examples include:

Institute for Urban Indigenous Health
Aboriginal and Torres Strait Islander Community Health Service Brisbane

Services may provide:

Aboriginal Health Workers
outreach nursing
transport assistance
family support
social work
palliative care coordination.

Additional Supports

Support Type	Examples
Transport	Patient travel schemes, community transport
Home support	My Aged Care, HACC, NDIS
Carer support	Carers Queensland
Equipment	Oxygen, hospital beds, mobility aids
Bereavement support	Community grief and spiritual support
Outreach	Rural and telehealth palliative services

Clinician Communication Tips

Helpful prompts include:

“What is most important to you right now?”
“Who would you like involved in decisions?”
“Are there cultural or spiritual practices we should respect?”
“Would support from Aboriginal Health Workers or Liaison Officers be helpful?”
“Where would you feel safest and most comfortable?”

Barriers Commonly Encountered

Common barriers include:

mistrust of healthcare systems
institutional racism
language barriers
remoteness
fragmented services
poor access to specialist palliative care
fear of dying away from Country
limited access to medications or equipment in remote areas.

Outcomes of Good Culturally Safe Care

Effective culturally safe palliative care may:

improve trust and engagement
improve symptom management
improve ACP uptake
reduce avoidable hospitalisations
improve quality of life
support culturally meaningful dying
improve bereavement experiences
reduce intergenerational trauma.