It took religious conservative Premier Dominic Perrottet’s anxiety in early June, 2022, about the passing of the NSW euthanasia bill for the government to wake up and try to fix end-of-life care in NSW, promising to flush $743 million into palliative care, the most under-funded service in the system.
This is a much-needed development, but if the money is spent without understanding how palliative care works, it will be flushed away.
Today, 50 per cent of people in NSW will die in a hospital. Only a tiny fraction of these people will benefit from the new easeful death legislation, which ensures forensic scrutiny of the pain levels of those who apply for it. (About 150 people a year, if Victoria is any guide.)
But the remaining 52,335 people who’ll die – or 98 per cent – are often still today badly overlooked, grossly misjudged, and poorly funnelled towards the services that could help them while they die.
Why some people get palliative care and others don’t.
To solve the mystery of why some people get the benefit of the palliative care Premier Perrottet now agrees everyone should get, and why others don’t, a clue comes from looking at how it’s currently offered in modern large teaching hospitals and what people die of.
Australia’s hospitals have committees and groups working hard on implementing the National Palliative Care Standards, a set of nine.
Where they tend to fall down is in standard Five, “transitions in and between services”, in other words when people from different specialist groups come together to work with a patient.
We think palliative care will flow everywhere throughout the hospital. But it doesn’t.
Patients have to be referred to the palliative care team, or have the palliative care team invited to the bedside of another ward, such as the intensive care ward.
And not every other department, the renal, the gastroenterology, the orthopaedics knows what palliative care can do, especially in pain management.
We tend to think of cancer as being the biggest killer in Australia. But it’s not. Between 2015 and 2019, only a little more than 17 per cent of the people who died, died of cancer.
Despite this, there’s something like disease bias when it comes to palliative care referral. Patients with cancers tend to be referred easily and with great success to palliative care units. That’s not surprising, because palliative care grew out of managing cancer deaths.
The four per cent who died of non-cancer respiratory diseases, such as chronic obstructive pulmonary disease, might also have had good access to palliative care. Because respiratory disease has long been recognised as a slow, frightening death, its doctors are very familiar with palliative care.
The biggest losers when it comes to access to palliative care are those with vascular, blood and heart-related diseases. And these tend to be the elderly.
They were 22 per cent of the deaths in the 2015 to 2019 time frame. These deaths were from coronary heart disease, cerebrovascular disease, heart failure, cardiac arrhythmias, high blood pressure diseases and chronic heart failure.
People with these diseases tend not to be perceived as dying soon. So the thinking goes: “We’ll get palliative care in when the calamity happens”, even though the steps towards organising that should have happened well before.
We need to ensure Jane’s death is not the norm.
Jane is a good example of how this plays out. She was 86 when she was hospitalised at a private hospital, at the end of 2021, for surgery to treat a leg ulcer. The elephant in the room, her chronic long-term heart disease of 15 years, was completely overlooked.
Jane died 21 days after her surgery, only getting the benefit of good palliative pain management, including the appropriate dose of morphine, in the last 24 hours before she died. This is a scandal, since the World Health Organisation has declared dying pain-free a human right.
Jane’s behaviours, which in a palliative care setting would have been seen as the concerns of an elderly person who was about to die, were instead wrongly interpreted as the behaviour of someone being difficult – leading to additional indignity. In Jane’s case, palliative care could and should have been twinned with life-prolonging treatment.
Jane’s behaviours were wrongly interpreted as the behaviour of someone being difficult.
To avoid wasting Perottet’s $748 million, we will need to pay professionals – doctors and nurses – from all the other departments in hospitals –- to be trained in palliative care and we will need to pay to replace them while they are trained. This might finally stop tertiary hospitals from treating palliative care education as an extracurricular learning experience.
In other words, it will only be by making palliative care a substantive part of the health system’s fabric that real change that will benefit the lives, and deaths, of all of us will occur.
We spoke with previous NSW Premier, Mike Baird, now CEO of HammondCare, one of the state’s largest providers of care to the aged and he agrees with this proposition.
Hammondcare has run an innovative program, Last Days of Life, which helps patients and their family in the final days of life. They have also run death literacy programs which help people understand what will happen as an aged relative becomes palliative and what steps they can take.
But Baird agrees that educating the consumer about palliative care is not the only requirement. The best place to start is actually in hospitals themselves.
“We need to help hospitals understand what’s possible in palliative care,” Baird said.
With his vast knowledge now of both end-of-life and previously of running a government, let’s hope he sits down with Premier Perrottet and has a meaningful chat about this.
Resources.
See the Guardian Australia’s article on the announcement of increased funding for palliative care, Premier announces $742m for end-of-life care while acknowledging he ‘failed’ to address issue as treasurer:
Looking at the causes of death can be fascinating – and can feel counter-intuitive. For the Australian experience, go to:
“Should heart failure be regarded as a terminal illness requiring palliative care? A study of heart failure patients’, carers’ and clinicians’ understanding of heart failure prognosis and its management” 2021.
https://pubmed.ncbi.nlm.nih.gov/28733461/
‘Palliative cardiovascular care: The right patient at the right time’. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7021658/