Better access to palliative care at home; 2024 Federal Budget is the next step

The 2024 Federal Budget this May is a key moment in deepening current reforms across the health, aged care, cancer, and disabilities sectors. 

Palliative Care Australia’s (PCA) Federal Budget Submission centres on practical proposals to improve care at home for people under and over 65 years with life-limiting illnesses, including those living with disability.  

“Every dollar invested in palliative care at home delivers a 100% return on investment – keeping people out of hospital and providing quality of life for people with life-limiting illnesses, their loved ones and carers,” says Camilla Rowland, Chief Executive Officer, PCA. 

“The actions we have outlined in our submission to the Health Minister and Treasury come from consultation with our members in every state and territory, we see this as a plan for meeting the increasing need for palliative care which is on track to double before 2050.” 

PCA’s submission outlines a range of proposals deserving of investment, but the three priority areas focus on care at home including: 

Under 65s with life-limiting illnesses, including those with disability.

This year PCA members in every state and territory have reported increasing numbers of people under 65 with a life-limiting illness, including those with disability, who are being refused access to the daily living supports they need to remain comfortably at home during the last phase of their life.  

Until recently the NDIS offered some support to this cohort, but changes to how the NDIS assesses eligibility have made this harder to access.  

Unclear jurisdictional responsibility also means that people are falling between systems, with devastating results. 

“Until a solution is found, those affected will often stay in hospital unnecessarily, unless they are able to fund basic services out of their own pocket or rely on loved ones, including children and young people, to step up and carry the load of caring,” Ms Rowland says. 

“The ripple effects have a profound impact on the people affected and their loved ones. 

“Recent discussions at National Cabinet, suggest that Commonwealth and state and territory governments are aware of this growing problem. However, in the absence of firm solutions, vulnerable people will continue to miss out on vital services.” 

At the centre of PCA’s Budget Submission is a new, interim, program of daily living supports for people under 65 with a life-limiting illness wanting to remain at home. The estimated cost is $77.6 million over three years. 

The interim program could get underway while governments discuss longer term responses to the Independent NDIS Review.  

Over 65s with life-limiting illnesses.

The Aged Care Royal Commission made it clear that palliative care and aged care should go hand in hand. Current reforms are beginning to make this a reality, but the pace of change must be sustained and deepened.  

PCA’s Budget Submission details proposals to ensure people over 65 receive timely palliative care in their own ‘family’ home or in a home like residential facility.  

In terms of residential aged care, PCA believes it is critical that all residents receive a palliative care assessment on entry. The continuation of the national Comprehensive Palliative Care in Aged Care (CPiAC) measure, which has achieved early success, should sit alongside this important next reform. 

“CPiAC is helping to embed palliative care within the aged care environment by linking palliative care services with people in residential aged care; avoiding unnecessary hospital transfers and admissions,” Ms Rowland says. 

“But funding for CPiAC is due to run out in June this year.” 

Cost is $33 million matched by states and territories over three years. 

Improving access to after-hours palliative care services.

Access to after-hours palliative care is an issue for people of all ages, and in some areas of Australia vulnerable people are being let down adding to pressures on local emergency departments.  

“We see the first step in addressing that need is a gap analysis that would identify variabilities in service access and empower all levels of government and primary health providers to co-ordinate a response and design care pathways,” Ms Rowland says. 

Estimated cost of the gap analysis is $300,000. 

“Life-limiting illnesses like dementia, heart disease, and cancer are the leading cause of death in Australia,” Ms Rowland says.   

“Seventy per cent of Australians say they would prefer to spend their final months and weeks at home. That is currently out for reach for most. PCA’s proposals would make it possible for many more people and deliver saving to the health and care systems.” 

A two-page summary as well as PCA’s full 2024 Federal Budget Submission is available on the PCA website. 

Additional facts and figures:

  • When compared to people with life-limiting illness who don’t receive care at home, people who are able to access care at home, visit an emergency department between 2 and 12 per cent less in their last year of life; have a reduction in days spent in hospital in their last year of life, of between 4.5 and 7.5 days and are twice as likely to die at home where 70% of Australians say they wish to die.  
  •  In 2022, of 61,100 patients receiving palliative care nationally only 22 per cent died at home, despite the expressed wishes of the majority. 
  • 95% of people who move to a residential aged care facility will die there within 22 months, PCA believes it is critical that all residents receive a palliative care assessment on entry.  
  •  In June 2022, more than 400,000 people used aged care services in Australia, more than 180,500 of those people lived in residential aged care. 
  • 190,939 people died in 2022, this is an increase of almost 20,000 since 2021. Evidence suggests that 51% of all deaths require palliative care, some studies put the need as high as 90%, which reflects our aging population and growing levels of chronic disease.