Most older Australians are accessing specialist palliative care far too late, with new national data showing many are only referred in the final days of life. Palliative Care Australia (PCA) says the findings point to a major gap in care that is costing families precious time for comfort, planning and connection.
The Australian Institute of Health and Welfare (AIHW) this week released its first linked national dataset examining the end of life experiences of older people. The analysis covers 132,000 Australians aged 65 and over who died from predictable, non sudden causes in 2021 to 22.
The report paints a stark picture. Only 38 per cent of older people received any specialist palliative care in their final year, and for most, the first contact occurred just 12 days before death.
PCA CEO Camilla Rowland said the timing is deeply concerning.
“The median time between a first specialist palliative care service and death was just 12 days. We know from the evidence that outcomes are better when people get early access to palliative care at least 90 days before death,” Ms Rowland said.
“Earlier access is linked with reduced hospitalisations, better symptom control and more supported decision making. That gap represents lost time for comfort, planning and connection for older people and their families.”
The report highlights notable differences across care settings, with residents in aged care homes the least likely to receive specialist palliative care. When they do receive it, it is often even closer to death compared with people using home care or residential respite.
Ms Rowland said this is especially troubling given the complex health needs common in aged care.
“Older people in residential aged care often have frailty, dementia and multiple chronic conditions. They absolutely stand to benefit from palliative care,” she said.
“Yet this data shows they are the least likely to receive specialist support, and when they do, families often receive only a week or two of help at the very end. Families want time to understand what is happening, to manage symptoms well, and to share precious, unhurried moments together.”
Even with its limitations, including the exclusion of palliative care delivered informally or within some service settings, the AIHW report reveals striking patterns.
More than two in three older people (68 per cent) experienced an unplanned hospital admission in their final year. At the time of death, 40 per cent were in hospital or an emergency department, while 36 per cent died in residential aged care.
The findings suggest that many older Australians are spending their last year dealing with significant instability, preventable deterioration and unwanted hospital transfers.
“The report confirms what many families and clinicians have been feeling for a long time, which is that palliative care is often introduced as a late response to dying rather than a supportive approach delivered over months,” Ms Rowland said.
Access varied significantly based on disease trajectory. People dying from cancer were the most likely to receive specialist palliative care at 60 per cent, while those with organ failure received it 28 per cent of the time. Older people following a frailty and dementia trajectory had the lowest access at just 22 per cent.
Age also played a major role. Older Australians aged 65 to 74 were far more likely to receive palliative care, at 50 per cent, compared with only 30 per cent of those aged 85 and over.
Australia is heading into a period of rapid demographic change. The number of people aged over 85 is expected to grow sharply over the next decade, increasing demand for high quality palliative and end of life care.
PCA says the new data must serve as a catalyst for policy and funding reform to ensure older people can access care earlier and more consistently, regardless of diagnosis or setting.
“Every older Australian deserves comfort, dignity and the right support for as long as they need it. We cannot continue to introduce palliative care in the final days and expect the best outcomes for people and the people they love,” Ms Rowland said.
This is so true in aged care. Staff can tell nurses of the deterioration of a resident but it’s hardly paid attention too. I’ve seen to many times resident waiting on the palliative care team or doctors to assess them only for them to die before they see them. And some are hard deaths where they needed end of life comfort measures. It frustrates the staff caring for these people at the end of life.