Jan Crowley wanted to spend her final days in a peaceful, home-style hospice.
She had recovered from breast cancer in 2014, but as her health deteriorated again in 2021, Jan and her husband, Justin Parry, realised something was wrong.
The cancer had come back.
"It was a further 10 rounds of chemo," Mr Parry said.
"But it was soon realised that she was going to be in palliative care because there was no comeback. It had metastasised."
Ms Crowley was organised. Advance-care directives and 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 manage and assumed they could opt for a hospice instead.
The couple soon learned that 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.
Looking back on the confusion and grief of that time, Mr Parry described feeling helpless at the lack of choice and alone in making tough decisions as his wife's health declined.
"We were just looking around to know what the heck we could do," he said.
No-one wants to talk about dying
Palliative Care Queensland chief executive Shyla Mills believed most people were reluctant to talk about how to prepare for death.
But she said talking about end-of-life care was key to better living.
"It's about quality of life with the time that you have left, and it can actually be a really beautiful phase," she said.
Ms Mills said, ideally, palliative care teams would work alongside specialists after the diagnosis of any life-limiting condition to make sure patients were aware of advance-care planning and could determine what quality of life looked like for them.
This was not always possible. Ms Mills said often people would only get access to palliative care in their final months.
"It is variable across the whole 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 further investment, it was still "a significant shortfall" of what she believed was needed.
A spokesperson for Queensland Health said the government had committed $171 million over five years for reforms.
As part of that, $55 million had been allocated for new community-based palliative care initiatives to increase home-based and after-hours care for adults and children.
Meanwhile, $102 million would go towards strengthening frontline specialist palliative care workers, the spokesperson added.
Lack of after-hours care
Most people who need palliative care in regional areas will stay under the care of their GP.
But that leaves a real lack of after-hours care or support for carers.
For Mr Parry and Ms Crowley, this lack of centralised care meant dealing with the private system for oncology and some in-home palliative care, and the public system for other palliative services.
Ultimately, this left Mr Parry feeling alone when issues arose at weekends or after hours.
Community pushes for hospice
In central Queensland, a group of volunteers has come together to address the care shortfall.
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 board has purchased a decommissioned convent in Rockhampton for the facility, with concept plans now completed.
However, the organisation needs to raise a further $750,000 by the end of the financial year to start construction.
The hospice's planned in-home care could start as early as December.
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 incredible and it was 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's got us to this point.
"We have some amazing people doing really great things, particularly within the hospital sector, but there's a real lack of community-based options.
"I think for too long our health system has really neglected excellent care for those at the end of life."
'Stronger quality of life'
Ms Mills said with Australia's growing and ageing population, it was an issue that needed to be examined nationally.
"The challenge in Australia's situation is that each state or jurisdiction operates differently," she said.
"Because of that it's very hard to talk on the needs in other states, but I do believe everyone needs further investment in palliative care.
"It's also got some cost savings for the health system if it's done correctly."
