This week (10-16 May) is National Palliative Care Week in Australia. This year’s campaign theme is Getting to the Heart of It: Big Questions. Real Answers. It’s an invitation for all of us to start conversations about dying, end-of-life care, and what it means to live well right up until the end.
This blog is about my reflections on who truly holds the space for those dying and their loved ones, and on the gaps that remain in this support.
First, some introductions
If you’re not familiar with the world of end-of-life care, a few terms are worth knowing.
Palliative care is specialised medical and allied health support for people living with a serious, life-limiting illness. It isn’t only for the final days of life; it can begin at any stage of illness and focuses on comfort, dignity, and quality of life rather than cure. It addresses physical symptoms like pain and nausea, as well as emotional, social, and spiritual wellbeing. Palliative care, as a discipline, is young; barely 50 years old in Australia and even younger in the United States. According to Palliative Care Australia, more than 450 people in Australia die from a life-limiting or terminal illness every day. That is an extraordinary number, and it puts into perspective just how much this work matters.
A spiritual care practitioner is a trained professional who provides spiritual support to patients, families, and sometimes staff. Spiritual care practitioners work with people of all faiths and none. They are skilled at sitting with the questions that illness and dying tend to surface: questions of meaning, identity, legacy, grief, and what, if anything, comes next. Part of the role is tailoring support to a person’s own beliefs and practices, whatever those may be. Most spiritual care practitioners in Australia are employed by institutions, such as hospitals, residential aged care facilities, and hospices. Some work in community settings and private practice, though this is less common.
A death doula (also called an end-of-life doula or death midwife) is a non-medical companion who supports dying people and their families through the process of dying. The role is broad, and intentionally so. A death doula might help someone reflect on and document their life story, plan a meaningful vigil, navigate difficult family conversations, assist with an advance care directive, or simply sit in companionable silence through the long hours of a night watch. Unlike spiritual care practitioners, death doulas are not employed by institutions; they typically work privately, engaged directly by individuals and families.
Voluntary Assisted Dying is another space where both death doulas and spiritual care practitioners can offer meaningful support, though it tends to be even less discussed. In my own practice, I serve as a VAD witness — one of the people required to be present for the paperwork that makes a person’s choice legal.
Dying used to be ours
Palliative care, as a formal medical specialty, is new. In the sweep of human history, fifty years is barely a breath. Before it existed, and before the medicalisation and industrialisation of dying that made it necessary, the care of the ill and dying was done at home, by family, in community, by people embedded in the fabric of daily life. That is, women, largely — mothers, daughters, sisters, aunties, the herbalist who knew how to wash and lay out a body, the elder who had sat with many dying people.
To be clear, women have always worked. Caring for the sick and dying was never a leisure activity; it was labour, even if it was rarely named as such. And industrialisation changed things not by taking women out of caregiving, but by adding other demands on top of it. When dying moved into hospitals and aged care facilities, it didn’t mean women stopped tending to the dying. It meant they were doing so within a new, more fragmented set of conditions, often without the community structures that had previously held that work together. Women still carry the majority of domestic labour and caregiving today, alongside paid employment and everything else.
I also want to name something this piece won’t do justice to, but that deserves acknowledgement. The communal and ceremonial tending of the dying is not only a pre-industrial Western story. For many First Nations communities in Australia, it is a living practice that the medicalisation of dying, and the broader history of colonisation, has disrupted in specific and serious ways. That history warrants its own careful conversation, and I’m not the right person to lead it here.
This shift to institutional dying has brought important gains, such as better pain management, expert care, and relief of suffering. Yet it has also created gaps in how families, communities, and individuals experience and understand dying, disrupting the connections and support that once defined end-of-life care.
In The social nature of dying and the social model of health, Allan Kellehear, one of the most important thinkers in this field, has observed that seriously ill and dying people spend about 5% of their final year of life in the direct care of health services. The palliative care team visits and then they leave. The medical system provides a framework, but it does not fill the hours. The other 95% of the time is filled by family, friends, and others. And the community containers that once held this work — the networks of kin and neighbours who knew what to do and showed up to do it — are not always there anymore.
The woman I met at the hospital
I want to tell you about someone I encountered at work. She was a mother. Every morning, after dropping her children at school, she drove to the hospital and sat with her own mother, who was seriously ill and for whom she was the sole carer. She stayed all day, every day, leaving in time to collect her children, get them home, help with homework, and make dinner. Then she returned to the hospital from six until eight in the evening. I asked if she had any time for herself after that. She said no; by the time she got home, she would do laundry and other chores until she could finally sleep.
She was doing what humans have always done. She was tending to her unwell mother. And she was doing it almost entirely alone, folding it into the rest of her life, with no container to hold her own exhaustion, fear, or grief.
Support does exist. My Aged Care and, in some circumstances, the NDIS can provide assistance, and community palliative care services offer some in-home support. But navigating these systems takes time, a clear head, and sustained energy that most people in this situation simply don’t have. The paperwork, the eligibility criteria, the waiting: none of it is designed for someone who is already at capacity.
Where death doulas come in
A death doula can make a real difference. A doula can sit with a seriously ill or dying person so that a family carer can sleep, take a breath, or simply exist outside of a caregiver role for a few hours. They can hold the practical and emotional complexity that a grieving family may not be able to manage. They can help someone think through what they want their final days to look like and advocate for those wishes. They can offer the consistent, unhurried presence that a stretched medical system isn’t structured to provide.
But most people, including medical professionals, have never heard of a death doula. In a 2020 paper, researchers describe end-of-life doulas as operating “at the edge of formal health care systems” in a role that formal systems struggle to map or accommodate. The consequences of this are tangible. A 2025 research paper indicates that over half of end-of-life doulas receive referrals in the patient’s last days of life. As Shannon Beresford, Director of Your Path Guide and Chair of Holistic End of Life and Death Care Australia (HELD), noted in a piece published recently, a late referral “limited the relational support that could be provided, which could amount to a single phone call.” The doula role is fundamentally relational. It requires time to listen, build trust, and understand a person’s wishes, values, and fears. Called in at the final hour, a doula can still offer something, but not what they could have offered months earlier.
The reasons for late referral are not straightforwardly about indifference. Partly, it is that the profession is still finding its shape. There are emerging professional standards — HELD Australia has developed a Code of Conduct for its members, and Preparing the Way offers a Certificate IV in End-of-Life Doula Services, the first accredited qualification of its kind — but consistency across the field is still developing. When a palliative care nurse or social worker cannot be confident about what a particular doula offers, making a referral is difficult, even if they’re supportive of the role in principle. The stigma around death is a factor: when formal systems are themselves uncomfortable naming dying until very late in the process, referrals to non-clinical support will follow suit.
There is also the question of cost. Doula support is largely a private expense, and while some doulas volunteer or offer sliding scale fees, many cannot. As with so much complementary care, access tends to follow privilege. The woman at the hospital, tending to her mother alone day after day, may well have benefited enormously from a doula’s support. Whether she could have afforded one is another question entirely.
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 are felt. The end-of-life doula role has emerged, as Shannon writes, 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. Doulas are not asking to displace anyone. They are asking to be let in.
That conversation is live and necessary. But I’d add one thing to Shannon’s piece: it needs to include spiritual care practitioners too. The silos run in multiple directions.
Where spiritual care practitioners fit
Spiritual care practitioners operate in a different context. As institutional employees, they have access to patients that doulas typically do not, and they are embedded in the multidisciplinary team, bound by professional codes of conduct and supervision structures.
But spiritual care practitioners are also stretched. Caseloads in hospitals are heavy, and a single practitioner may be responsible for an entire ward or campus. In residential aged care, the situation can be even more acute: a facility may have only one spiritual care practitioner for the entire site, who attends just one or two days a week. This is a resourcing reality that limits what is possible regardless of a practitioner’s skill or commitment.
Some spiritual care practitioners also work in private practice and community settings, and this area deserves greater visibility. The institutional model is not the only one.
The doula role and the spiritual care role are genuinely complementary and, in some respects, distinct. A spiritual care practitioner brings a particular kind of training in theological and existential reflection, professional accountability, and institutional access. A death doula offers availability, flexibility, and sustained presence that institutional roles rarely permit.
A new container is being built without us
As I wrote last month in my review of Edge of Life, psilocybin-assisted therapy is no longer hypothetical in Australia. Since 2023, it has been a legally prescribed treatment, and a small but growing number of authorised psychiatrists are now offering it in clinical settings. The research behind it, including a trial at St Vincent’s Hospital Melbourne, which Edge of Life documents, has consistently shown that the therapy can produce profound spiritual experiences, including significantly reduced death anxiety in people with life-limiting illness. These are not incidental effects. For many patients, they are the point.
And yet the clinical framework being built around this treatment makes no mention of spiritual care practitioners or death doulas. The question of who supports a patient through what may be the most spiritually significant experience of their life — not just during the session, but in the days and weeks that follow — is being answered, right now, by omission. Psychological integration and spiritual accompaniment are related but not the same thing. A person who has encountered something they can only describe as sacred needs someone who can sit with mystery without needing to resolve it, who understands the language of transformation, who can accompany them as meaning continues to unfold. That is work both spiritual care practitioners and death doulas are trained to do, and we can do it in private practice. We are available. The question is whether the people designing these models will think to include us.
This is a patient care issue. The risk is that psilocybin-assisted therapy reproduces the same structural gap visible across palliative care more broadly: excellent clinical intervention, the door closing, and the patient left to integrate something enormous, largely alone.
A note on my position: I’m on the Pastoral Care team at St Vincent’s Hospital Melbourne, the same institution where the trial took place, though I was not there when it ran and have not worked at that site. I am a graduate of Preparing the Way, and continue to work with them. I’m writing here in my own voice, not on behalf of any organisation. I also have a private practice.
So what do we do?
I don’t have a tidy answer, but I think the first step is to talk about it, which is exactly what National Palliative Care Week is asking us to do. This year’s campaign aims to make palliative care easier to understand by encouraging honest questions and clear answers. That’s a good start.
If you are approaching the end of life, or caring for someone who is, I would encourage you to ask your care team about the community support available. Ask about spiritual care. Ask whether there are doula services in your area. You may have to advocate for yourself, and that is not fair, but it is, for now, the reality.
If you are drawn to this work — as a death doula, a spiritual care practitioner, a volunteer, or simply as a community member willing to show up — know that the need is vast. The woman at the hospital is not unusual. She is ordinary. She is everywhere.
Those of us who take the sacred dimension of living and dying seriously have something to offer here. Not as a replacement for medical care, but as its complement. We are the community that gathers in the spaces the system doesn’t reach, the people willing to sit in the liminal hours when the clinical team has finished for the day and the long night begins.
The craft of accompanying the dying has never really gone away. It just needs a new container.