Support at home for people with terminal illness – a birthday lottery?

Palliative Care Australia

The 2024 Federal Budget represents the continuation of some critical programs within the palliative care sector, however the opportunity for bolder, deeper change has been kicked further down the road.

“The two-year funding extension for the Comprehensive Palliative Care in Aged Care (CPiAC) measure is a $25 million investment that has been welcomed by the sector,” says Camilla Rowland, Chief Executive Officer, Palliative Care Australia (PCA).

“CPiAC was one of three key priorities PCA and our members highlighted in our 2024 Federal Budget Submission and it is great to see this important program continue.

“It’s an initiative that builds on the recommendations of the Aged Care Royal Commission and was due to finish at the end of this financial year – in just a matter of weeks.”

CPiAC has achieved some early success when it comes to embedding palliative care within the aged care environment – developing models, links and pathways to specialist palliative care services for people and staff in residential aged care and helping to avoid unnecessary hospital transfers and admissions. 

“This is especially significant because CPiAC is a strong example of State/Territory Governments, the Australian Government, and providers working together to meet a need and align services. It’s a great example that should inspire action in other parts of the health and care budget,” Ms Rowland says.

PCA and our members also welcome $10.8 million over two years to extend the Palliative Aged Care Outcomes Program (PACOP) and the Program of Experience in the Palliative Approach (PEPA) program. PACOP and PEPA do integral and outstanding work in upskilling the aged care and primary care workforce to further embed palliative care capacity across care settings.

The Budget also invests $900,000 in the continuation of paediatric palliative care services in Queensland through the children’s hospice Hummingbird House, Brisbane.

“One of our other Budget priorities was addressing the gaps that exist in after-hours palliative care,” Ms Rowland says.

“PCA and our members we will be pressing the Government to do better as part of its current review of after hours primary care.”

The third priority in PCA’s Budget Submission related to care at home for people under 65 years.

“Our role is to point out where as a country we need to do better for some of our most vulnerable people and families,” Mr Rowland says.

“It’s heartbreaking to realise that this week’s Budget does little to support the urgent needs of people under 65 with a life limiting illness, who need basic care and support at home during their last months and weeks.

“These are people with a range of terminal illnesses and disabilities who end up in hospital or in emergency departments simply because the day to day living supports they need to stay at home are beyond reach.

“Considering that 70% of Australians say they would prefer to die at home, this is far from the patient-centred approach we all aspire to.

“Federal, state and territory governments have acknowledged the gap that exists and have agreed something needs to be done. While aged care reforms are vital and necessary for people over 65 years, we are yet to see meaningful reform for people under 65 who can’t access the NDIS, but who still need support at home – it’s become a birthday lottery.

“These people simply can’t wait for governments to work out who should pay for basic care at home. We estimate there will be at least 3,000 people in this position this year – people who don’t have much time left.

“The longer it takes to get a solution, the more people will die without getting the support they need – unless they pay for it out of their own pocket.

“We have presented solutions and will keep working with the Government and pushing for better care for these people and their loved ones,” Ms Rowland says.

Palliative Care Australia’s 2024 Federal Budget Submission can be

/Public Release.