Regional palliative care ‘shortage’ leaves dying with limited end-of-life care options

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Jan Crowley wanted to spend his last days in a peaceful, family-run hospice.

She had recovered from breast cancer in 2014, but as her health deteriorated again in 2021, Jan and her husband, Justin Parry, realized something was wrong.

The cancer had come back.

“It was about 10 more rounds of chemo,” Mr. Parry said.

“But we quickly realized that she was going to be in palliative care because there was no going back. She had metastasized.”

Ms. Crowley was organized. Advance care directives and a power of attorney were in place and she planned to die in a community hospice.

Mr Parry said his wife did not want to die in their central Queensland home because they did not think it was something they could handle and assumed they could opt for hospice instead .

The couple soon learned that this type of care was not readily available if you lived in regional areas.

In August, Ms Crowley died at the couple’s home on the Capricorn Coast.

Mr Parry struggled to find support for Jan when she was diagnosed with terminal cancer.(ABC Capricorn: Michelle Gately)

Looking back on the confusion and grief of that time, Mr Parry described feeling helpless over the lack of choice and alone in making tough decisions as his wife’s health declined.

“We were just looking around to see what we could do,” he said.

No one wants to talk about dying

Palliative Care Queensland chief executive Shyla Mills thought most people were reluctant to talk about how to prepare for death.

But she said talking about end-of-life care was the key to a better life.

“It’s about quality of life with how much time you have left, and it can actually be a very beautiful phase,” she said.

A hospital drip bag hanging on a white wall
Shyla Mills thinks increased funding for palliative care would reduce pressure on hospitals. (ABC News: Maren Preuss)

Ms Mills said ideally palliative care teams would work alongside specialists after any life-limiting condition is diagnosed to ensure patients are aware of advance care planning and can determine what their life has been like. quality of life.

This has not always been possible. Ms Mills said people often only access palliative care in their final months.

“It’s variable across the state…but it often involves a lot of travel,” she said.

Ms Mills said while the state government had taken ‘a small step in the right direction’ by committing new investment, it was still ‘a significant shortfall’ compared to what she thought necessary.

The state government has been contacted for comment.

Lack of after-hours care

Most people who need palliative care in the regions will remain under the care of their GP.

But that leaves a real lack of after-hours care or support for caregivers.

For Mr. Parry and Ms. Crowley, this lack of centralized care meant dealing with the private system for oncology and some palliative home care, and the public system for other palliative services.

Ultimately, this left Mr. Parry feeling lonely when problems arose on weekends or after hours.

Community pushes for hospice

In central Queensland, a group of volunteers came together to address the lack of care.

The Fitzroy Community Hospice has already secured $8 million from the federal government for a new facility in Rockhampton, which would include community care services.

The council purchased a disused convent in Rockhampton for the facility, with concept plans now complete.

However, the organization needs to raise an additional $750,000 by the end of the fiscal year to begin construction.

Home care planned by the hospice could begin as early as December.

Construction plans from a bird's eye view.
Plans are underway to build the Fitzroy Community Hospice on a disused convent site in Rockhampton.( Provided: Facebook: Fitzroy Community Hospice)

Local GP and board member Vicki Richmond has a personal reason for seeing the hospice built, having cared for her father in New Zealand in the weeks before he died five years ago.

“That experience of caring for him in a well-supported service was amazing and a real blessing,” she said.

“I really see a lack of options here in Central Queensland and my story, along with many others, is what brings us to this point.

“We have amazing people doing really good things, especially in the hospital sector, but there’s a real lack of community options.

“I think for too long our healthcare system has really neglected great care for people at the end of life.”

Generic image of palliative care.
In central Queensland, volunteers raise funds for a new hospice in Rockhampton.(ABC News)

“A better quality of life”

Ms Mills said that with Australia’s population growing and aging, this was an issue that needed to be looked at nationally.

“The challenge in Australia’s situation is that each state or jurisdiction operates differently,” she said.

“Because of that, it’s very difficult to talk about the needs in other states, but I believe everyone needs to invest more in palliative care.

“There are also cost savings to the healthcare system if done correctly.”

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