Health

A national action plan aims to provide care and comfort for all children with terminal illness, and to ease the isolation their families still face. By Ginger Gorman.

Administering palliative care for dying children

Marmaduke at home with his soft toy Shelley.

Credit: Karen Simons

The start of this story is an ending, which unfolds in a child’s bedroom. Just after 9.30am, on a September morning in 2012, light streams through candy-splotched curtains and across rainbow-striped sheets on a hospital bed.

Aside from this one medical imposition, the space sings with childhood. Scattered among the covers are two large dinosaur plushies, Chupa Chups, a water bottle and an assortment of small figurines – a tiger, a few cows and more dinosaurs.

Simon Waring recalls sitting on a wooden chair at the bedside of his four-year-old son, Marmaduke, holding his hand. “I was just sitting there very calmly. I wasn’t really talking.”

In that moment – precise and fleeting – Marmaduke took his last breath. Simon leaned down close and whispered, “Oh, you’ve gone, haven’t you?”

Simon can’t explain exactly how he knew this. He gives an almost imperceptible shrug: “You could feel it.”

Thirteen years later, the father of four is tearful speaking about his joyful, curly haired boy. But he is happy to think of sitting alongside Marmaduke that bright morning: “I have gratitude for how I feel. If I think of him now, I can just see his smiling face.”

At just 15 months, Marmaduke was diagnosed with stage four neuroblastoma – a rare and aggressive cancer. Despite treatment, he relapsed in 2011 and died the following year.

For the last five weeks of his son’s life, Simon brought him home from hospital, an experience he calls “an extraordinary privilege”.

“A cocoon of love,” is the way he describes Marmaduke’s final days. “He was back home in his own bed, surrounded by all his favourite colours, smells, his brothers and older sister. It was like he never had a moment alone. He always had one of his siblings lying on the bed, morning or night, and constant company and physical affection.”

The way Simon sees it, his family’s experience transcended the fear so many of us have about death and dying: “You become incredibly present … you’re open to the smallest moments and they have great power.”

The care woven around Marmaduke as he died in comfort and dignity at home was possible only because of the access Simon’s family had – over a period stretching back 10 months – to high-quality paediatric palliative care. This is a holistic, family-centred approach that provides expert symptom management, emotional and practical support and 24/7 advice and assistance.

Sadly, not every family with a critically ill child has an experience like this one. More than 32,000 Australian children live with conditions that severely shorten their lives and just over 650 children die from them each year. However, analysis from the Australian Institute of Health and Welfare (AIHW) finds that in 2021 less than half of these children were treated by a specialist paediatric palliative care team.

The same report states that one in three children were referred to a palliative care team less than a month before death – alarmingly late access for many families. Those in regional and remote areas struggle to receive adequate care, with geographic distance and systemic gaps creating a postcode lottery for those in need.

Adelaide-based nurse practitioner Sara Fleming is widely regarded as a pioneer in paediatric palliative care in Australia. She also serves as a senior lecturer in the field at Flinders University.

Before specialist services, families would face their child’s death unprepared and unsupported – followed by long, isolating grief. Fleming can look back 25 years and see just how far we’ve come, but she’s acutely aware of how far there is to go.

She worries the community-wide unwillingness to deal with the truth of children dying young is getting worse, not better. “It’s a painful thing that’s too hard to think about,” she says, “And as medical science has got cleverer and our ability to treat and cure diseases has gone ahead in leaps and bounds, we’ve been lulled into that false sense of security that child death just couldn’t be possible.”

While Fleming is keen to champion medical workers, she knows the system can do better – starting with early referrals to palliative care where appropriate and better communication. “I think everybody who works in the healthcare profession should be trained in how to have sensitive conversations and have the courage to say the unthinkable in instances where a child’s life is limited,” she says.

One of the hardest things her team of specialist paediatric palliative care workers – who go in and out of people’s homes – must grapple with is the loneliness some families face during their child’s illness.

Fleming recalls occasions of sitting among hundreds of mourners gathered for a child’s funeral and feeling bewildered. She says she’s often wondered during those moments: “Where were you?”

As she puts it: “Why did this family not experience this love and concern when they were going through the child’s illness and dying process, instead of turning up for the glory event?”

More advocacy is needed, she says, to expand access to paediatric palliative care in underserved rural areas, so that geography can’t determine “whether you get the support or you don’t”.

Quite aside from the painful stigma and shunning that families of gravely ill children may face in the community, Fleming believes we hold gross misconceptions about palliative care itself.

“In the face of death, we realise how much more precious life seems, and there’s that need to pack everything into whatever time is left. That’s part of the joy of providing this type of support,” she says of specialist paediatric palliative care staff. “What matters is finding that balance for this particular family and being able to hear them.”

As an example, she recalls the triumph of helping a dying teenager achieve a parachute jump from a plane by carefully adjusting their pain medication.

Indeed, she has watched families move from “the blistering agony of diagnosis” to understanding their child wouldn’t live as long as they’d hoped – and then learning to carry that anguish while still finding delight and meaning in their child’s remaining life.

In a first for Australia, the Paediatric Palliative Care National Action Plan aims to tackle the isolation and lack of support many families still face. Released in 2023 after years of consultation with bereaved families, the document is a major step forward. It outlines six priorities: equitable access; timely, integrated care; workforce education and training; clinical guidance; family support; and better communication about paediatric palliative care.

Now in its second rollout stage, the peak body Palliative Care Australia (PCA) is working on nationwide awareness and implementation. The action 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 a groundbreaking Paediatric End-of-life Care Communication course for health professionals.

Camilla Rowland, chief executive of PCA, says this type of critical work is often under-recognised because it is confronting to think about children dying, “so paediatric palliative care can be an area that doesn’t get widely discussed”.

“Not enough data is collected about the children affected, leaving their experiences and needs unheard,” she continues. “Although their numbers may be small, the implications reach far beyond each individual child – carrying emotional and social impacts across entire communities.”

She’s clear-eyed about the limitations of the path mapped out in the national action plan. While the document is “an important step on a pathway to make things better”, there’s work ahead. Her hope is “that there will come a time where every child is able to access specialist or community palliative care from the point of diagnosis of a terminal condition”.

For Rowland, one part of the solution lies in consistency for medical staff working in the field: “The clinical guidelines aim to support healthcare professionals in their decision-making – no matter where they are in the country, at what time of day or what point in their career.”

Simon now describes himself as a palliative care advocate and was involved in the PCA project from the outset. It’s his hope that, one day, every child who requires specialist paediatric palliative care receives it. “I was always conscious that living in a major city, our family could access high-quality support for Marmaduke that isn’t available to every child in Australia. That felt unjust then and it’s still awful now.”

This article was first published in the print edition of The Saturday Paper on August 9, 2025 as "The cocoon".

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