Are we getting palliative care right? The new data says we’re getting there, but not fast enough

This year’s National Palliative Care Week theme was “Getting to the heart of it: Big Questions. Real Answers.” The AIHW’s latest report, released during the week, makes the case for why those questions still matter.

Palliative care use in Australia has grown sharply over the past decade. In 2024-25, around 15,900 people received Medicare-subsidised palliative medicine services, with more than 78,000 services delivered nationally. Palliative care-related hospitalisations grew at 4.9% a year between 2015-16 and 2023-24, double the growth rate of all-cause hospitalisations (2.3%). Prescriptions for palliative care medicines rose 59%, from 908,000 in 2016-17 to 1.4 million in 2023-24.

Almost 4 in 5 people receiving palliative care services are aged 65 or older. That proportion will only increase as the population ages.

The growth in services is real and it reflects genuine progress. Most of the national palliative care measures tracked against the 2018 National Palliative Care Strategy have either improved or held steady. But the AIHW is careful about what the numbers don’t yet show.

There is still no reliable national data on whether people receive palliative care when they need it, whether care is culturally safe, whether advance care planning is happening, or whether people die in the place they would have chosen. These are the questions that matter most to older Australians and their families. We can’t answer them yet.

The workforce picture is lopsided

The palliative medicine physician workforce has grown strongly. Between 2013 and 2023, the number of employed palliative medicine physicians nearly doubled, from 183 to 358, at a 5% annual growth rate in full-time equivalent terms. The palliative care nursing workforce grew far more slowly, from about 3,300 to 3,900 over the same period, less than 1% a year.

Physicians and nurses both matter in end-of-life care, but nurses carry much of the daily load, particularly in aged care settings. That gap in growth rates is worth watching.

A faith-based organisation deciding to speak plainly about death

During the week, Uniting AgeWell released a podcast special on end-of-life care. For a Uniting Church organisation to step forward publicly and lead this conversation is genuinely notable. Religious and faith-based aged care providers have historically been more cautious about discussing dying openly, particularly in ways that acknowledge the full range of what a “good death” might look like for residents with different values and backgrounds.

Uniting AgeWell has been doing practical work in this space: palliative care committees at most of its residential facilities across Victoria and Tasmania, a program to ensure no resident dies alone, and White Lily cafes, community conversations designed to help people talk about death before they’re in crisis.

The White Lily model is worth knowing about. Structured conversations about death, held before someone is seriously ill, give people a chance to say what they want, ask what they don’t understand, and get some of the fear out of a topic most of us avoid until we can’t. That kind of early conversation connects directly to the gap the AIHW flagged: we don’t know enough about advance care planning because not enough of it is happening, or being recorded, or being honoured.

What the data gap means in practice

The AIHW’s report is honest about its own limits. “A full national picture of palliative care quality and equity is still emerging,” it says, citing limited or no national data on cultural safety, advance care planning, preferred place of death, and the proportion of people who receive palliative care when needed.

These aren’t abstract gaps. They describe real experiences: an older Aboriginal person whose family can’t be present at end of life. A woman who wanted to die at home but ended up in hospital because her care package ran out. A man whose advance care plan was never found in his file.

Growing service volumes and increasing expenditure are encouraging. They don’t answer the harder question of whether older Australians are getting the care they actually want, in the place they want it, with the people they love nearby.