Much like mental health, palliative care is living through its fair share of stigma, confusion, and fear. With a lot of people too scared to accept a referral because they believe death’s going to be imminent, there’s myth-busting to be done.
A new report by Palliative Care Victoria sets out to do some debunking with the first solid dataset in the state’s history. What it reveals is sobering but encouraging – the challenge has been set but the steps to get there aren’t as insurmountable as they appear.
What is palliative care?
If someone has a life limiting or terminal illness, palliative care helps to improve quality of life and help them live as fully as possible. It includes treatments to help reduce physical pain, offers emotional and spiritual support to patients and their families, and guidance for navigating complex medical decisions and care planning.
Different to hospice care, palliative care can start at diagnoses and work with other treatments. In Victoria in 2024, it’s estimated that one in three people could have benefited from palliative care. It’s a gap that’s been steadily improving, but the report spotlights just how much more there is to do.
Inside Victoria’s first detailed statewide palliative care report
The State of Palliative Care in Victoria report gives us the deepest insight into palliative care the state has ever witnessed. The first of its kind, it draws on data from multiple sources, including a one-of-a-kind dataset from the Centre for Victorian Data Linkage (CVDL).
Violet Platt, CEO of Palliative Care Victoria, is excited about the report’s potential – not just now, but for years to come.
“In Victoria we’re fortunate with some of the data linkages that have been created,” she explains, “and we’ve got a health economics team at the University of Melbourne who understand palliative care. We had a board and a membership that really wanted to know our data – all of that helped us create the report we’ve got now.”
Palliative care is less than 1% of the state budget, a relatively small part of health, which has made it difficult to tell the true story. People can be cared for in so many places and in so many ways, which is why a report like this hasn’t been attempted before.
Across nine key findings, a story emerges that at first glance sounds alarming, but actually reveals a huge amount of opportunity for growth and improvement. And the places where it intersects with aged care are both the most pressing and the most in need of clarity.
Access to palliative care
When delivered, the quality of care in Victoria is some of the best in the country, according to Palliative Care Outcomes Collaboration (PCOC) data. However, palliative care is often accessed too late, with fewer than 1 in 3 people with a cancer diagnosis receiving a referral in a timely way.
“One of the more telling statistics was how many people were introduced to palliative care in an emergency department in their last two weeks of life,” Violet explains. “That tells us there was a distressed person, and probably an exhausted carer, who couldn’t manage anymore and hadn’t had any support in place.”
A lack of access isn’t the sole fault of GPs, doctors, or care workers – it may be systemic. But part of the solution lies in the availability of workers who are trained to deliver this very specialised form of care.
The training and education mismatch
The report not only spotlights a $6.5 million funding gap for specialist services, it also pinpoints a massive workforce risk in the demand for palliative carers. The current specialist service capacity meets less than 34% of estimated needs, which leaves the remaining 66% without support or a plan.
It takes around ten years to train a palliative care specialist – whether they’re a nurse or a doctor. Current demand modelling points to a 50% increase in palliative care by 2032 and 150% by 2050. So while this isn’t aged care’s problem to fix, it will become a factor in the years to come as the ageing 85+ cohort requires care.
“I don’t think it’s aged care’s job to become palliative care specialists,” she firmly states. “I don’t think they should put that pressure on themselves. They’re experts in looking after the older person: that’s their skill set. But everyone has a responsibility to understand the palliative care approach: those gentle conversations about what’s important to someone and what they’d like to achieve.”
The urgent challenge facing palliative care
If action isn’t taken now, providers won’t be able to keep up with growing demand. In a rather bleak statistic, by 2045 this looks like 76 Victorians dying each day without access to care.
“Aged care has to have one eye on palliative care,” Platt suggests. “Thinking about residents regularly, acknowledging where they’re at, understanding their choices and what’s important to them. Do they want to go in an emergency ambulance when they’ve got a chest infection, or stay where they are and be managed by the GP? It’s not rocket science – it’s the ability to ask: if you became unwell, what would be important for you?”
Platt will know her job is done where in the future there’s a day, like R U OK? Day, where people share their end of life plans with their loved ones. Where it’s less about a formalised document, and more about having those conversations to make sure everyone’s wishes are known and respected.
What aged care leaders can do
Platt recommends starting with the End of Life Directions For Aged Care (ELDAC) website, a government-funded resource with a range of different toolkits and services. Making your staff aware of resources like ELDAC can help build their confidence and facilitate more informal conversations about advanced care planning around dining tables and across facilities.
There’s a strong and mutually beneficial relationship to be found between aged care and palliative care, and Platt is nothing if not encouraging towards collaboration.
“One thing [leaders] could look at is the deaths that have occurred in residential aged care, and how many of those people had access to specialist palliative care – what the connectors were, the in-reach teams, the GP support – so we can start to tell that story as a system.”
When the different parts of Australia’s health and care systems link up and work together, the flow on effects impact not only the workers, but the people at the other end of the chain – the ones the systems are (or should be) designed for.
