Advance Care Directives- Why They Matter.
By Embrace - End of Life Services
Advocacy at the end of life is about more than paperwork. It’s about whose voice is protected, whose wishes are honoured, and who is left vulnerable in systems that were never designed with them in mind. One of the most powerful tools we have to safeguard a person’s autonomy is the Advance Care Directive (ACD) — yet the people who could benefit from it most are often the least likely to have one.
This includes Aboriginal and Torres Strait Islander peoples, people with disabilities, and people for whom English is not their first language. Each group faces unique barriers, but they share a common thread: a long history of being marginalised, misunderstood, or excluded by mainstream health systems.
“According to Palliative Care Australia- 88% of Australians think it’s important to talk to their family about how they want to be cared for at the end of life, 50% have not done anything to share those wishes.
What is an Advance Care Directive – and why does it matter?
An Advance Care Directive records your values, preferences, and wishes for future health care, especially if you become too unwell to speak for yourself. It can include:
What matters most to you — comfort, dignity, culture, family, country, spirituality
Treatments you would or wouldn’t want
Who should speak for you if you cannot
Despite its importance, research consistently shows that ACD uptake is low across Australia, and the gap is widest among marginalised communities.
Without an ACD, families can be left guessing, and the person themselves can be carried along by the system rather than directing their own care.
The ACD Gap for our most Vulnerable Populations.
Indigenous populations
Aboriginal and Torres Strait Islander peoples experience:
Higher rates of life‑limiting illness
Strong preferences to die on Country
Deep, justified mistrust of hospital‑based systems
Cultural protocols around “death talk”
Limited access to culturally safe services
Studies show that ACDs are significantly under‑used in Aboriginal communities, not because people don’t want to plan, but because the systems offering ACDs are often rigid, culturally unsafe, or disconnected from community ways of knowing and being.
Despite these barriers, when ACDs are introduced in culturally safe ways, they can be not only accepted, but valued. A qualitative study of Aboriginal people in Western Australia found that participants recognised the potential of ACDs to reduce family conflict and honour the person’s wishes. Other work on Groote Eylandt has shown that when local health workers partner respectfully with Elders and communities, many Aboriginal and Torres Strait Islander people are willing to complete individual advance care plans that reflect kinship, country, and cultural responsibilities.
The problem is not that Aboriginal and Torres Strait Islander peoples “don’t want to plan.” The problem is that the systems and processes have not been designed with them, for them, or in ways that earn trust.
People with disabilities
People with disabilities face a different but equally harmful set of barriers:
Medical ableism, where clinicians may assume a lower quality of life
Communication barriers, especially for people with intellectual disability, acquired brain injury, or complex communication needs
Guardianship systems that can override personal choice
Lack of accessible information about end‑of‑life options
Fear of not being believed or respected when expressing preferences
Research shows that people with disabilities are less likely to be offered advance care planning conversations, and more likely to have decisions made about them rather than with them.
An ACD can be a powerful safeguard against unwanted treatment, misinterpretation of communication, or assumptions about capacity.
People for whom English is not their first language
For people from migrant, refugee, and culturally and linguistically diverse (CALD) backgrounds, the barriers include:
Language barriers that make medical jargon inaccessible
Lack of interpreters or reliance on family members to translate sensitive information
Different cultural understandings of illness, dying, and decision‑making
Fear of authority or institutions, especially for people with refugee backgrounds
Documents and resources rarely available in their language
Studies show that people from CALD backgrounds are less likely to complete ACDs, often because the process is not culturally or linguistically accessible.
For many, an ACD can be a bridge between cultural values, family expectations, and the Australian health system.
“An Advance Care Directive is not just a form. It is an act of self‑determination. A protection. A voice that carries forward when your own becomes quiet, and everyone — regardless of culture, language, disability, or history with the system — deserves that.”
Why Advoacy and ACD’s Matter
End‑of‑life advocacy is not just about speaking up in hospital corridors. It begins much earlier, in the quiet, supported conversations where people are helped to understand their rights, explore their values, name their fears, ask questions safely, and put their wishes into a document the system will recognise.
They outline what matters most to a person, including values, cultural needs, family roles, and preferred care.
They clarify which treatments a person does or doesn’t want, reducing confusion during crises.
They identify who should speak on the person’s behalf, ensuring decisions reflect their wishes.
To improve ACD uptake and end‑of‑life experiences for marginalised communities, we need:
Community‑designed, culturally safe ACD processes
Accessible formats (Easy Read, interpreters, translated documents, AAC‑friendly versions)
Disability‑affirming, trauma‑aware communication
More Aboriginal and CALD health workers
Non‑Indigenous practitioners willing to unlearn, listen, and adapt
Neutral advocates who can bridge the gap between community and system
Without these foundations, individuals risk being carried along by a system that defaults to medical authority rather than personal autonomy. Advance care directives becomes the bridge: a clear concise document that ensures a person’s voice, values, and identity remain at the centre of their care, even when they can no longer speak for themselves.
If this has prompted you to think about your own wishes, you don’t have to work through it alone. Embrace offers personalised support to help you create an Advance Care Directive that reflects your values, culture, communication needs, and the way you want to be cared for.
If you’d prefer to start independently, you can also download a free Advance Care Directive form from Advance Care Planning Australia, which is a helpful way to explore the process at your own pace
