Some time ago, a friend requested my advice. Her mother was in hospital for the seventh time in one year. The tests just kept coming but the patient was no better. Her body was failing and her cognition faltering. The doctors were openly pessimistic on their daily rounds. And yet, after three weeks, there didn’t seem to be a clear plan, or at least one the family understood.
“Why can’t someone tell us the big picture?” my friend said. Her mother’s downward trajectory was evident, but she felt guilty thinking “bad” thoughts. However, if her mother was dying, she wanted to take her home.
“What you need is palliative care,” I said.
I explained that, judging by her account, her mother was nearing the end of life. Doctors commonly struggled to identify this, and specialist palliative care was best equipped to pull things together. A doctor or nurse would facilitate conversations about the goals of care, manage troublesome symptoms and help figure out the venue of care. If going home mattered, palliative care would help, but if things didn’t work out, they could initiate admission to hospice.
I rattled off this advice as routine for an oncologist, but to my friend it felt like an epiphany. She had heard of palliative care but had little idea of what they did – and no idea she could request it.
Sadly, my friend’s mother died three days after our conversation. Months later, my friend rued that she did not regret her mother’s death as much as the missed opportunity for better end-of-life care.
As the population ages, I suspect this is going to be a more common lament.
Australia’s universal healthcare system is well regarded and widely envied. But the latest evidence paints a serious picture of the state of palliative care. In 2021-22, there were 132,000 predictable deaths of people aged 65 and over. The median age of death was 85, which makes the word “predictable” worth noting. In other words, these were expected deaths associated with stepwise decline. Over half of people were using at least one aged care service in the last year of their life and just under half (47%) were in organ failure.
Let’s turn to the last year of life.
If you are the glass half-full kind, the good news is that today 60% of cancer patients receive palliative care and the younger you are, the more likely you are to receive it. However, only 28% of people with organ failure and a dismal 22% of those with dementia and frailty receive palliative care.
You don’t even have to be the glass half-empty type to appreciate that most vulnerable elders and an awful lot of cancer patients are going without a service which, when properly administered, is known to mitigate the physical and emotional distress of dying for all parties.
Pair this with the evidence that the cost of healthcare in the last year of life is 14 times higher than usual care (10 times higher for those over age 80) and does not include the huge intangible costs, and it’s hard to neglect the practical implications for a society that wants to pride itself on healthcare from cradle to grave.
When I was training, cancer surgeons and even oncologists conflated palliative care with giving up. Today we acknowledge that palliative care can and should go hand in hand with other forms of cancer treatment.
Palliative care is such a regular feature of my work I wouldn’t have guessed that the first specialist palliative care service occurs a median of just 12 days before death. This, when experts say that a three-to-four-month input is ideal to spot needs, marshal resources and prepare stakeholders.
Like my friend’s mother, 68% of dying people had an unplanned admission in the last year of life. Many died in hospitals, and worse, emergency departments. Increasingly, they are people with dementia and organ failure; despite their progressive deterioration being documented by multiple providers, it seems no one thought of palliative care.
Advance care directives are an essential document for all nursing home residents. But despite specifying quality of life over aggressive measures, dying residents are commonly bundled into hospital. When we suggest that residents stay in nursing homes rather than languish in hospital, relatives decline out of fear that nursing homes aren’t equipped for good end-of-life care. The data supports them.
People living in residential care have far less access to specialist palliative care, compared with people using home care and residential respite care (21% v 49%) and receive their first specialist intervention just eight days before death. Some of this gap may be filled by GPs and community providers, but we would want to be sure before getting comfortable.
Thanks to modern medicine, more cancer patients are living longer. Palliative care is no longer synonymous with cancer.
But staggering numbers of people will develop dementia, now the leading cause of death in Australia. And organ failure for most people will be slow and irreversible.
Hence the need for palliative care expertise, which is compassionate, measured and importantly, tailored to the longer trajectory of these conditions compared with cancer.
Better funding, awareness and advocacy is required to include all the people who are missing out.
Earlier and better palliative care is better for patients and their loved ones. It also helps professionals who bear witness to suffering. If we could achieve all this while saving on even a fraction of healthcare costs, all of society would win.
• Ranjana Srivastava is an Australian oncologist, award-winning author and Fulbright scholar. Her latest book is called Every Word Matters: Writing to Engage the Public
