How Australia is failing dying children

News.com.au

7 hours ago

EXCLUSIVE
Warning: This story discusses the death of a child and paediatric palliative care
Looking back now, 51-year-old Alix can see the signs that her irreverent, curious youngest child, Sofia, was seriously ill much earlier than anyone realised.
In early 2018, the six-year-old was getting headaches. Somewhat inexplicably – given Sofia's happy and relaxed family and school life – the doctors put the issue down to 'stress'.
Only when Alix, her husband and their eldest daughter holidayed with Sofia in Bali later that year did things become impossible to ignore.
To Alix, Sofia seemed unusually thin, and her stomach was swollen.
On their return to Australia, an ultrasound revealed the devastating truth.
'That's when our lives changed, you know? The doctor phoned me to say I had to come to the clinic immediately. Sofia had a tumour in her tummy, in her liver,' Alix told news.com.au.
The diagnosis was angiosarcoma, a rare and aggressive cancer usually seen in adults, not young children. The prognosis was grim.
Sofia's story is far from unique. In Australia, approximately 32,000 children live with life-limiting conditions.
Yet, according to the Australian Institute of Health and Welfare, in 2021 alone, an estimated 654 children died from these conditions, and less than half received specialist paediatric palliative care.
Palliative care is specialised medical support for people with life-limiting illnesses, focused on improving quality of life rather than prolonging it.
Yet despite its benefits, many families of critically ill children are never offered this care — a gap experts say must urgently be addressed.
In the wake of Sofia's diagnosis, what followed were months of surgeries, chemotherapy, radiotherapy, and unrelenting uncertainty. At one stage, doctors removed a vertebra from Sofia's spine and replaced it with titanium.
The young girl, once so lively and full of energy, woke from surgery unable to walk, plagued by burning sensations and neurological issues.
'When you talk about the treatment, that's what hurts the most,' Alix says, her voice faltering with grief as she recalls the needles, the fever, the feeding tube.
'That is the part that becomes difficult.'
For a while, Sofia returned to school. But the cancer came back, this time in her foot and hip. The doctors understood Sofia would not survive.
'They knew she would die but they didn't tell us: 'This is the path.' 'Communication was absent,' Alix explained.
Instead, a cycle of vague suggestions for further chemotherapy and radiotherapy continued, even after it was clear Sofia's cancer was terminal. Alix remembers the moment she and her husband were encouraged to consider yet more treatment.
'We couldn't understand. If she's going to die and the cancer is going to keep growing, why are you offering her chemo and radio,' she said.
The family had reached breaking point.
'We didn't want to be disrespectful, but we wanted to scream at the doctor and say: 'Are you stupid? Why do you want her to have that?' So, she's going to last six more months and she will die, vomiting, bald, not eating and with a tube. Horrible!'
In that moment, Alix did something many parents never feel empowered to do. She took a deep breath and asked for something radically different.
'I said, 'When the time comes, can you help her to die well? I don't want her to suffer.''
Only then, after Alix specifically requested it, was Sofia referred to specialist palliative care services.
This delay is heartbreakingly common, according to experts like Sara Fleming, an Adelaide-based nurse practitioner with nearly 25 years' experience in paediatric palliative care.
'The most heartbreaking thing that used to happen, and sometimes still does, is when referrals come late, and a family would sit there asking, 'Where have you been? Why didn't we meet you before?''
Sara recalls her early days in the sector when families with dying children were left isolated, afraid, and unsupported.
'There was a level of suffering that didn't need to be there, just because of a lack of knowledge and a lack of outreach from health professionals.'
In the wider community, families face social isolation too. Friends, neighbours and acquaintances often don't know how to cope, so they simply disappear.
'You represent the unthinkable,' Sara says. 'These diagnoses, these things that kill people's kids … it's generally just a s**tful roll of the dice. And so, you reflect, 'There by the grace of God, goes me.''
Alix experienced this first-hand. 'When a kid gets sick, everyone is so panicked, and people don't talk to you anymore because they don't know how to manage,' she explained.
Yet, as Alix and experts like Sara argue, early, honest conversations about prognosis, treatment options, and palliative care could dramatically change families' experiences.
Sara believes paediatric palliative care is fundamentally different from end-of-life care for adults.
Children often live with life-limiting conditions for years, while still navigating normal developmental challenges like puberty, friendships and schooling.
'We're stepping into working alongside a family where their child has been diagnosed with a life-limiting illness or disease,' she said,
'However, in the meantime, what matters is the living of that life. For children, it's also about what happens after they die.
'What memories or mark will they leave behind? For kids, it's important that we have these conversations about what's their legacy.'
Alix's daughter Sofia was a perfect example of this.
'She was always laughing, even since she was four months old. She was so much fun, and even when she grew up, she was always cheeky.'
Sofia loved to paint, read, and collect rocks. Her bedroom is still filled with soft toys, books, and her framed artwork.
'Rocks?' I ask Alix, surprised.
Alix nods, laughing softly through tears. 'She used to pick them up and bring them to the house. And I used to throw them away so much! She was a different [type of] person, and she would speak up her mind.'
In Sofia's final months, Alix kept her promise: no more needles, no more invasive treatments. Her pain was managed, and she was surrounded by loved ones.
The night before she died, Sofia's family gathered for a prayer.
Alix whispered gently to her: 'When you dream, just follow the light, because you're going to be happy again. You're going to run again.'
Sofia died at home on June 7, 2020.
For Alix, one of the most painful parts of the experience remains the absence of clear, compassionate conversations from medical professionals early in Sofia's diagnosis.
'Don't make people suffer because you don't want people to die. It's not your job to save everyone,' she said.
Her message echoes what advocates have been fighting for decades to achieve: a health system where families like hers aren't left to fend for themselves, and where palliative care is offered early, not as a last resort.
A national first for Australia, the Paediatric Palliative Care National Action Plan is aiming to shift that reality.
Released in 2023 by Palliative Care Australia (PCA) after years of research and consultation, the Plan marks a significant step forward for Australian families and health professionals. Now in its second stage, PCA is working on nationwide awareness and implementation.
'This is a really important step for paediatric palliative care in Australia,' Annette Vickery, Projects Manager at PCA, told news.com.au.
'Having a national plan and clear guidelines means families and clinicians will finally have more consistency and support. I hope it makes a real difference in everyday practice — helping teams feel more confident and better equipped to care for children, wherever they are.'
The Plan has also led to the development of Australia's first paediatric palliative care clinical guidelines – which will be made public by the end of this year – as well as the nation's first Paediatric End-of-Life Care Communication course for health professionals.
This whole suite of work was co-designed with bereaved parents.
'Talking and communicating a terminal diagnosis is difficult and especially so when it involves children and young people,' Annette explained.
'It was very important that we equip and empower our health professionals with the right skills and tools to communicate meaningfully across different stages of the care journey and across diverse cultures.'
But Annette is clear: there is still a long way to go.
'Too many children who could benefit from paediatric palliative care are not referred early enough,' she said.
'Systemic barriers like workforce shortages, lack of community-based services, lack of connections between specialists, and the stigma attached to the term 'palliative care' often delay or limit access.'
The Plan specifically acknowledges the inequities faced by families outside major cities, those from disadvantaged backgrounds, and children with non-cancer conditions — groups who often miss out on timely care altogether.
To tackle this, the Plan recommends workforce training, culturally safe care, and expanding outreach services, including for families in rural and remote areas.
Annette also believes it's about reframing how society understands palliative care. 'When palliative care is seen only as end-of-life care, families and health professionals often delay referrals, fearing it means giving up hope,' she explained.
'What's lost is the chance to make memories, and spend the last days, months or years doing what matters most with your loved ones.'
For Sara, it's time for the health workforce to face the uncomfortable truth.
'It's about the clinician saying, 'This is not a failure.' It's not a failure to acknowledge that maybe time might be short.'
Her hope, like Alix's, is for a cultural shift — one that finally brings children's palliative care out of the shadows.
'If we start teaching kids about death, since they are little, they will take it as natural from childhood into adulthood,' Alix added.
And, perhaps, families like hers will no longer have to navigate the unimaginable alone.
For anyone seeking further information and resources about paediatric palliative care, start here.