A study published recently in The Conversation made for uncomfortable reading.
Researchers from the University of Sydney interviewed people nearing the end of life in a palliative care unit, along with their families and the professionals supporting them. What they found was not surprising to anyone who works in this space. Yet, it was stark to see it documented so plainly. Financial stress is not a peripheral concern for people at the end of life. For many, it is central.
One participant put it simply: ‘It’s expensive being ill.’
What the research found
Australia’s palliative care system is largely publicly funded, but the reality on the ground is messier than that framing suggests. Patients and families described navigating a patchwork of short-term subsidies, waiting lists for government support packages, and gaps they had not anticipated and were not prepared to fill.
Some had been paying out of pocket for medications and equipment they assumed the system would cover. Others described the funding running out while they were still receiving care, because they had outlived the fixed timeframes the support was designed for. One community nurse described patients who had been referred to end of life care with an expectation they had six weeks to live, only to find themselves two years later having exhausted their superannuation, with no money left for electricity.
For families, the financial pressure was often less about medical costs and more about the price of simply being present. One family member described the anxiety of watching the clock on a $20-a-day hospital parking fee while her mother was dying inside.
The research also raised something harder to quantify: the weight of not wanting to be a burden. Patients spoke about worrying that their illness would leave their families in debt. Some described feeling pressure not to stay too long in the palliative care unit because ‘the beds are needed.’ The financial reality of the health system was not invisible to them. They were living inside it.
This is not new, it is underacknowledged
People who work in end of life care, such as end of life doulas, palliative care nurses, social workers, and counsellors, have long known that the experience of approaching the end of life is shaped by far more than medical care. Practical pressures, financial stress, administrative complexity, and the fear of becoming a burden are all part of what people carry. They simply do not get talked about very much, in public conversation or in policy.
The value of research like this is that it makes visible what is often treated as private, incidental, or beside the point. It is not beside the point. When someone approaching the end of life is spending cognitive and emotional energy on funding applications and parking meters and whether there will be enough money for a funeral, that shapes their experience of this period just as surely as pain management does.
Where end of life doulas come in
End of life doulas are not financial advisers, and they cannot fix the structural problems the research describes. They cannot extend government funding timelines, eliminate waiting lists, or change the way hospitals are funded. What they can do is help people navigate this terrain before it becomes a crisis.
Much of the distress the research captures has a common thread: families encountering unfamiliar, complex systems at the worst possible time, without preparation and without a guide. Doulas work precisely in that space. Part of what a trained end of life doula does is help individuals and those close to them think through practical questions well in advance: what kinds of support are available, what to ask healthcare providers, what decisions will need to be made and when.
That might mean sitting with someone to map out the funding landscape before it becomes urgent. It might mean gently initiating a conversation about after-death care and funeral preferences while there is still time and energy to have it without crisis. It might mean looking into holistic and family-led options for after-death and funeral care, including eco-friendly approaches that can significantly reduce costs. It might mean helping a family understand what Medicare or their private health cover covers and what it does not, so they do not discover gaps at the bedside.
None of this is bureaucratic work. It is relational work done in the context of accompaniment and care. the practical and the relational are not separate at the end of life. Reducing uncertainty reduces suffering. Preparation is a form of compassion.
The conversation we need to be having
The researchers conclude that we need to talk more openly about how money factors into dying. We agree. The end of life is still too often framed as a purely medical event, when the reality is that it is a social, practical, emotional, spiritual and, yes, financial one.
Doulas understand this. It is, in many ways, the premise of the role: that people approaching the end of life need more than clinical care, and that the non-medical dimensions of this experience deserve skilled, sustained attention.
The research is a reminder of why that work matters. It also points to where there is more to do in policy and in the health system, and in how we prepare, as individuals and communities, for the reality that dying costs something and that not everyone bears that cost equally.