Demand for palliative care services expected to surge as number of Australians aged over 85 grows

Jan and Frank Kasteel were married for nearly 52 years.   (Supplied: Jan Kasteel)

Jan Kasteel and her late husband Frank were best friends.

In 2017, after nearly 52 years of marriage, Mr Kasteel received a diagnosis of a language variant of Alzheimer’s.

“As the disease progressed there would be a step down … and those steps got bigger,” she said.

“And the last couple of years … I could only understand about 10 per cent of what he was saying.

“It became quite lonely. We were partners all our lives.”

Just two days before her husband died, the 72-year-old connected with the Royal Hobart Hospital’s palliative care team to receive advice on how to best support her dying husband.

She wishes she had accessed assistance earlier.

“I would have been able to have someone to talk through what was happening for me, instead of being involved so much in the moment of caring,” she said.

Demand for palliative care to increase

As Australia embarks upon a rapid aging process, Ms Kasteel’s situation will become all too familiar.

In just six years, the first of Australia’s baby boomers will turn 85.

Before that milestone is met, the number of Australians aged 85 and over will be growing at 60,000 per year by the end of the decade, up from about 20,000 in 2024.

Demographer Bernard Salt likens the accompanying rush on aged and palliative care services to a “freight train”.

Mr Salt says Tasmania, which has the second-highest death rate after the Northern Territory, is an example of why rapid planning is needed to support an older population.

“There are about 14,000 people in Tasmania today aged 85 or more. In the next six or seven years that number is going to increase from a base today of 300 extra people per year to 1,600 people [per year],” he said.

“This is accelerating, it’s gathering pace. It’s like a freight train heading downhill towards us.”

A 2020 KPMG report found that by 2050, national demand for palliative care services will increase by 200% to 188,264 people. Mr Salt says he is hopeful a “calamity” can be avoided by a change in approach.

“This is part of the Australian lifestyle, part of the Australian story,” he said.

“Let’s make it as good a story as we can over the next decade.”

Unpaid carers carrying the load

Palliative Care Tasmania’s new State of Palliative Care report stresses the need for more coordination and planning in supporting those with a life limiting illness.

The report identifies three quarters of Tasmanians in the last year of their life could have benefited from palliative care support such as pain relief, counselling and family assistance.

However, it appears this demand is largely being met by unpaid carers, echoing national findings from a 2014 Grattan Institute study.

The report found there is one unpaid carer providing palliative care work for each Tasmanian requiring support, with family carers providing 75-90 per cent of care to people who have palliative needs.

It also suggested unpaid carers in regional Tasmania, where demand is often greatest, are making up for “disparities” in the spread of paid workers across the state.

Palliative Care Tasmania chief executive officer Venéy Hiller, says the data paints a picture of a system that is “fragmented” and creates barriers to Tasmanians “facing end of life situations” with families having to carry substantial responsibility.

“The way that we look after our sick are dying and our bereaved is a reflection on who we are as a society,” Ms Hiller said.

“We know people find it difficult to talk about end of life and palliative care. We know that in our homes. We know that in our communities. And it seems it’s the same at a government level.”

‘Treat the soul’

Judi Adams, 57, wants to see that shift made as quickly as possible.

After living an active life in Brisbane, Ms Adams had little warning that she had pancreatic cancer when she suddenly lost her appetite.

“It sort of came as a bit of a shock,” she said.

“I thought I’d have more time and I suppose it makes you re-evaluate what really matters, and what’s really important.”

Ms Adams is using that time to encourage a community rethink on how we engage with palliative care.

“A lot of people consider palliative care to be around your final stages of life as opposed to it being about supportive care through a life limiting illness,” she said.

“For me, palliative care may not just begin with me being at the final stages of my life, it becomes part of that process and part of that journey.”

Since returning home to Hobart to be closer to friends and family, she is actively planning for how she wants to be treated through an advance care plan as her health declines.

“Even though you’re losing control of what happens and you’re losing control of life … it still gives you a little bit of comfort to know that you have had a say in what happens with you and what’s most personal to you,” she said.

“You need to be able to treat the soul … and the heart.”

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