You would hope for your dying days to be full of calm and care. But our research with people who are dying shows this is far from the reality for many people.

Instead, financial stress plays a huge and increasing role in who can afford a “good death”.

What we did

In our recent study, we interviewed 18 people nearing the end of life in a palliative care unit, as well as six family members and carers, and 20 palliative care professionals.

We asked what it was like to be dying, to care for someone at the end of life, and to work in palliative care.

Palliative care is for people of any age who have a life-limiting illness. This means they have little or no prospect of a cure. So the goal is to prioritise comfort and living well as they approach the end of their life.

In Australia, palliative care is meant to be mainly free, with most costs covered by state and federal governments, as well as private health insurance.

But our research shows the patchwork of public and private funding means many people are confused and overwhelmed about how to pay for this essential care.

But first, how does palliative care work?

Palliative care can be provided at home or in hospital, a hospice or residential aged care.

Who pays for palliative care depends on where it’s being provided (for example, in the private or public hospital system) and whether the patient has private health insurance.

Australia’s health system is a complex hybrid of public funding, private insurance, charity and out-of-pocket payments.

For dying people and their families, navigating this system can be bewildering.

Previous research has explored how palliative care is funded in Australia. But until now we haven’t heard much directly from patients, carers and workers about how this affects them.

‘It’s expensive being ill’

Our research took place at a specialist palliative care unit in a major city hospital.

People working in the unit told us the activity-based funding model – where hospitals are paid for the number and mix of patients they treat – puts the focus on efficiency, rather than quality of care.

Patients spoke about not wanting to leave behind debt, while carers described confusing and stressful costs.

Patients and families told us they often enter palliative care confused by the patchwork of short-term subsidies, waiting lists for government support packages and gaps they must fill themselves.

For example, some people we interviewed said they had been paying out-of-pocket for medications and essential equipment such as oxygen, which they expected government supports to cover.

But securing government funding, such as the Support At Home program, End-of-Life Pathway or Carer Payment, can sometimes take months to organise.

And once secured, this funding is only available for fixed periods of time. This means patients who live longer than expected can be left without financial security.

Diane*, a community team nurse, told us:

We’ve had people who’ve been referred to us [for end-of-life care] and they were told six weeks [until death], and two years down the track they’ve done their superannuation, they’ve spent it all, […] they’ve got no money left and they’ve still got to pay electricity and things like that. […] And they go, ‘Well, what do I do now?’

Emily* told us her first worry when she got to the palliative care unit was not about dying, but whether the cost would impact her kids:

I didn’t want the children to be loaded with any more debt [because of] me. I would rather [die] on the bench in the park […] the last thing you want to leave them is debt.

Another participant, Kevin*, put it bluntly:

It’s expensive being ill.

Participants who were dying also described feeling pressure not to “outstay their welcome” in a palliative care unit because “the beds are needed” or “the insurance won’t keep paying”.

Alana*, who described herself as a “long-hauler” in the unit, said:

Let’s face it, it’s a business. And I know that. They’re not getting as much money from me as they would for patients coming in and out.

Patients were acutely aware that in the current health system, time is money.

The cost of visiting

For family and friends, their concerns were less about medical bills and more about the price of simply being present.

Jane*, whose elderly mother was dying in the unit, noted the prohibitive cost of parking on site:

They make you pay $20 a day. Your loved one’s dying. Really? […] I’m petrified when I stay overnight […] ‘when does [the parking] run out? I’d better go down and repay’.

Financial stress also impacted whether families could make funeral arrangements. A senior nurse, Patricia*, recounted:

They would say, ‘I don’t have a funeral director. I don’t think we are able to pay for the cost for the funeral. Can you arrange something?’

Death is an economic – not just medical – issue

Our research reveals how money, and worrying about it, can affect people’s experiences when nearing the end of life.

To ensure everyone can access a death free from financial stress, we first need to talk more openly about how money factors into dying.

More accessible government funding for palliative care patients and carers could help ensure everyone has an equal chance of a good end of life. This should be available for as long as people need, rather than on fixed terms.

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*Names have been changed for privacy.

Henrietta Byrne, Postdoctoral Research Fellow, Sydney Centre for Healthy Societies, University of Sydney; Alex Broom, Professor of Sociology & Director, Sydney Centre for Healthy Societies, University of Sydney, and Katherine Kenny, ARC DECRA Senior Research Fellow, Sydney Centre for Healthy Societies, University of Sydney

This article is republished from The Conversation under a Creative Commons license. Read the original article.