I want to be honest with you from the start.
This blog is not a complaint. It is not a criticism of the doctors, nurses, aged care workers and palliative care teams who show up every day to do some of the most demanding work in our health system. The people working in those settings are, overwhelmingly, skilled, compassionate, and deeply committed.
But there is a problem. And it is time we named it clearly.
End of Life Doulas are not well understood in formal care settings. In many cases, we are not understood at all. And that gap (between what we do and what the system thinks we do) is costing people a better death.
End of Life Doulas are not well understood in formal care settings. In many cases, we are not understood at all. And that gap is costing people a better death.
Where the confusion comes from
End of Life Doulas (EOLDs) operate at the edge of formal health care systems. That phrase, from international peer-reviewed research, captures the problem precisely. We exist in the space between the clinical and the human. Formal systems, by their nature, struggle to map or accommodate roles that don’t fit neatly inside their structures.
Research points to the ambiguity of the EOLD role and resulting confusion for healthcare providers, individuals and families. This is not conjecture. It is a documented, peer-reviewed finding from multiple countries, including Australia. The confusion is real, it is widespread, and it has consequences.
When a clinician doesn’t understand what an EOLD does, several things can happen. They may feel protective of the patient (understandably so). They may assume overlap where there is none. They may worry about boundaries, liability, or disruption to care routines. Or they may simply have no framework for where we fit, and so we don’t.
Research shows that building links and collaborations with potential referral organisations is essential, requiring time, knowledge of, and trust in EOLD support. That trust takes time to build. And it cannot be built if the conversation never starts.
The late referral problem
One of the most tangible consequences of this disconnection is when referrals happen too late — or not at all.
Research indicates that over half of EOLDs receive referrals in the patient’s last days of life. A late referral, as the person was close to death, limited the relational support that could be provided, which could amount to a single phone call.
This matters enormously. The work of an EOLD is relational. It requires time (time to listen, to build trust, to understand a person’s wishes, values and fears). When we are called in at the final hour, we can still offer something. But we cannot offer what we could have offered weeks or months earlier.
The reason for late referrals is not malice. Reasons for late referrals are varied, with a key element being stigma around death. When formal systems are themselves uncomfortable naming death (when palliative conversations are delayed, when “dying” is not documented as such until the very end), it follows that referrals to non-clinical death support will be late too.
What we do — and what we don’t
Part of the confusion stems from a genuine lack of clarity about the EOLD role. That is something the profession is working hard to address.
Research from Flinders University makes clear that EOLDs currently provide a service that health professionals do not. This is not a competitive observation. It is a clarifying one. We are not trying to replace nurses. We are not trying to replicate social workers. We are not trying to do what chaplains do, or counsellors, or volunteer visitors.
What we offer is something distinct: a sustained, non-medical, holistic presence. Before death, during dying, and in the immediate aftermath. We help people articulate and document their wishes. We support families to navigate systems they have never encountered before. We sit with people in the dark hours when clinical staff are needed elsewhere. We hold the human side of dying (not because clinicians don’t care about it, but because the system they work within was never designed to give them the time).
We hold the human side of dying — not because clinicians don’t care about it, but because the system they work within was never designed to give them the time.
The EOLD role has emerged over the last decade precisely because gaps exist that impede the ability of palliative care clinicians to truly advocate and deliver the comprehensive services needed for patients, family caregivers and communities.
We are not a threat to that system. We are a response to its limits.
What the evidence says about formal integration
Internationally, there are early but meaningful signs that integration is possible — and that it works.
As of 2024, only six per cent of hospice providers in the United States seek to integrate EOLDs (which tells us both how much work remains and that pioneering organisations are beginning to lead the way). In the United Kingdom, a commissioned NHS evaluation in Leeds found meaningful evidence for the value of the EOLD role within a formal service delivery model.
In Australia, Palliative Care Australia has taken a meaningful step by developing resources to help palliative care services and health professionals understand and work alongside EOLDs. That is a start. But resources alone are not sufficient. What is needed is systemic change (in policy, in education, and in culture).
What needs to happen
I’d like to clarify something: this is not exclusively the responsibility of formal care systems. EOLDs also have work to do. We need to show up as credible, consistent and synergistic. We need clear standards, documented competencies, and a professional framework that official systems can point to. That work is underway in Australia, and it matters.
But the system also needs to move. Here is what I believe needs to change:
Education and awareness. Clinicians, aged care workers and palliative care teams need to understand what EOLDs do (and don’t do). This needs to be part of professional development, not an afterthought. The more familiar the EOLD role becomes to people working in formal settings, the more naturally referrals will happen, and at the right time.
Earlier referral pathways. Formal care settings need to create clear, simple mechanisms for referring patients and families to EOLDs (ideally at or near the point of a serious or terminal diagnosis, not in the final days of life). This is where the greatest difference can be made.
Real collaboration. The relationship between EOLDs and formal care teams should not be adversarial or uncertain. It should be collaborative (rooted in mutual respect, clear communication, and a joint commitment to the person dying and their family). In the best models emerging internationally, EOLDs are part of the extended care conversation, not an afterthought.
Policy recognition. In Australia, EOLDs are not yet formally recognised within aged care or health policy frameworks, beyond limited mention. That needs to change. Recognition within relevant policy (including the Support at Home program and national palliative care strategies) would create a basis for sustainable integration and funding.
A shared language. Perhaps most importantly, we need to develop a shared language around dying (one that clinical teams and EOLDs can use together). When we are all working from the same understanding of what a positive death experience looks like, who is responsible for what, and how to navigate the journey together, the person dying is the one who benefits.
The future we are working towards
I have enormous respect for the people who work in palliative care, aged care, and acute settings. They do extraordinary things in difficult circumstances. I have encountered it firsthand through my volunteering with the Central Adelaide Palliative Care Service.
What I am championing is not a takeover. It is a partnership.
Around 80% of Australians will die in a formal care setting. That means formal settings are where most of the work of dying happens, and where most of the gaps in human support exist. EOLDs are not asking to displace anyone from that space. We are asking to be allowed into it, with clarity, with credibility, and with the shared goal of helping Australians die better.
International reflection on the EOLD movement points to a model for integration pathways within existing health care systems, and identifies that the fundamental developmental issues are similar across countries. Australia is not starting from scratch. We are part of a global conversation, and we have an opportunity to lead it.
We are not asking to displace anyone from that space. We are asking to be allowed into it, with clarity, with credibility, and with the shared goal of helping Australians die better.
The question is not whether EOLDs belong in formal care settings.
The question is how quickly we can build the understanding, the frameworks, and the relationships to make that happen (for the sake of every Australian who deserves to die as themselves).
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.
References
- Krawczyk, M. & Rush, M. (2020). Describing the end-of-life doula role and practices of care: perspectives from four countries. Palliative Care and Social Practice. https://doi.org/10.1177/2632352420973226
- Krawczyk, M., Clare, E., Collins, E., et al. (2023). End-of-life doulas: international reflections on a transnational movement. Palliative Care and Social Practice. https://doi.org/10.1177/26323524231186826
- Prendergast, L., Saltus, R. & Depledge, J. (2025). Mapping the role of the end-of-life doula: a scoping review and logic model framing. Palliative Medicine. https://doi.org/10.1177/00302228251389332
- Rawlings, D. (2023). Identifying the emerging role of death doulas. Caring Futures Institute, Flinders University. https://blogs.flinders.edu.au/caring-futures-institute/2023/04/14/identifying-the-emerging-role-of-death-doulas/
- Thompson, A. & Utz, R. (2024). End-of-life doulas: a systematic integrative review and redirection. The Gerontologist, 64(12). https://doi.org/10.1093/geront/gnae144
- Thompson, A. (2023). End-of-life doulas: exploration of values, goals, and motivations. Innovation in Aging, 7(Suppl 1). https://doi.org/10.1093/geroni/igad104.3301
- Collins, E. et al. (2025). Top ten tips palliative care clinicians should know about end-of-life doulas. Journal of Palliative Medicine. https://doi.org/10.1089/jpm.2024.0261
- Palliative Care Australia. (2023). End-of-life doulas and palliative care. https://palliativecare.org.au/resource/end-of-life-doulas-and-palliative-care/
- Partners In Care / The Peaceful Presence Project. (2025). Partners In Care introduces end-of-life doula program. https://www.partnersbend.org/eoldoulas/
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