A new study from the University of Sydney has confirmed what many families already know: dying in Australia can be expensive, confusing and stressful in ways nobody warned you about.
The researchers interviewed people nearing the end of life, their carers and palliative care workers. What they found was sobering. People were paying out of pocket for medications and equipment they assumed would be covered. Families were stressed about parking costs while their loved one was dying metres away. And some people had burned through their superannuation — still alive two years after being told they had six weeks.
“It’s expensive being ill.”
The gaps are real.
Australia’s palliative care system does a lot of good work. But it was designed around medical need, not human need. When the clinical team goes home, when the funding period ends, when the paperwork gets too hard, what happens to the person who just needs someone to sit with them? To help them think through what they want. To make sure their family isn’t falling apart in the car park.
That’s where an End-of-Life Doula (EOLD) comes in.
What an EOLD actually does.
An EOLD doesn’t replace doctors, nurses or aged care workers. We work alongside them.
Our role is to provide non-medical support. The kind that doesn’t show up in a funding formula but makes an enormous difference to the quality of someone’s final weeks and months.
EOLD support might look like:
- Sitting with someone and helping them put words to what they want from their remaining time
- Supporting a family to understand the system and ask the right questions
- Helping with legacy work such as writing letters, making recordings or creating stories to leave behind
- Simply being a calm, consistent presence when everything else feels uncertain
An EOLD doesn’t disappear when the funding runs out. We don’t have a ward to return to or a caseload of 40 other patients. When you work with an EOLD, you have someone in your corner for the whole journey.
A question of equity.
The Sydney study raises an important equity question: does a “good death” only belong to people who can afford it?
As an EOLD who works with LGBTQ+ communities, people from culturally diverse backgrounds and others who often feel invisible in mainstream health services, this question matters deeply to me. Everyone deserves to feel safe, seen and supported at the end of life, regardless of their postcode, their income or their family situation.
EOLDs can help bridge that gap. We’re not a luxury add-on for people who can afford extras. We’re a practical, human response to a system that, despite everyone’s best efforts, still leaves people falling through the cracks.
The conversation needs to change.
The Sydney researchers call for more open conversations about money and dying. I’d add we also need more open conversations about what a “good death” actually requires.
It requires more than medical care. It requires time, presence, continuity and someone who isn’t watching the clock or the budget. It requires the kind of support that an EOLD is specifically trained to provide.
If you’re supporting someone at the end of life, or thinking ahead for yourself, I’d love to talk about how I can help.
About the Author
Shannon Beresford is the Director of Your Path Guide Pty Ltd, an Adelaide-based practice dedicated to helping people live and die with comfort, meaning and connection. His work brings together End-of-Life Doula care, sound therapy and compassionate travel experiences that honour each person’s story and choices.
As Chair of HELD Australia Ltd, the national peak body for holistic end-of-life and death-care practitioners, Shannon advocates for stronger recognition of the End-of-Life Doula role across Australia’s health and aged care systems. He also holds a Certificate IV in End-of-Life Doula Services, the only nationally accredited qualification in this field, and volunteers with the Central Adelaide Palliative Care Service (CAPCS), providing practical and emotional support to individuals and families in their final weeks of life.
Reference
Byrne H, Broom A, Kenny K. ‘A “good death” has a price – and a new study shows not everyone in palliative care can afford it.’ The Conversation, 5 March 2026. https://theconversation.com/a-good-death-has-a-price-and-a-new-study-shows-not-everyone-in-palliative-care-can-afford-it-274202
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