Australians are being challenged to confront the uncomfortable topic of caring for dying children, as part of World Hospice and Palliative Care Day on October 12.

The nation’s only children’s hospices – Bear Cottage in NSW, Queensland’s Hummingbird House at Chermside and Victoria’s Very Special Kids – say paediatric palliative care is often misunderstood and can mean some families are not accessing the vital services they need.

“Palliative care is an uncomfortable topic for most people, even more so when it involves children,” said Very Special Kids chief executive officer Michael Wasley.

“But our inability as a community to talk about this difficult topic means children and families who need palliative care are missing out.

“The lack of awareness around what paediatric palliative care entails means both families and those in the health and community sectors are slow to access it.”

Bear Cottage nurse manager Narelle Martin added: “While many think of a hospice as a sad place, it is truly a haven of love, joy, and meaningful connections.

“A children’s hospice is about more than care – it’s about community, resilience and hope.”

An estimated 29,000 children and young people are living with life-limiting conditions in Australia, with the number expected to rise to about 44,500 by 2033.

But just 46 per cent of the children who died in 2021 from a life-limiting illness received specialist palliative care, according to the Australian Institute of Health and Welfare.

Michael Wasley said that unlike adult palliative care, paediatric palliative care starts from the point of diagnosis and focuses on quality of life at every stage of a child’s journey, not just their death.

“With children spending an average 40 per cent longer in palliative care than adults, it is a vital resource in caring for their mind, body and spirit, while also supporting their family,” he said.

Narelle Martin said: “At Bear Cottage, we strive to create an environment that not only supports the child but also embraces the entire family.”

“Our focus is on making every moment count, giving families cherished memories and lifelong friendships, which continue to offer comfort for the rest of their lives.”

Hummingbird House general manager Ellen Whittaker said it is crucial that appropriate care and support is in place to help families through one of the most challenging times they will face.

“Research conducted by Hummingbird House this year found a life-limiting condition has physical, social, emotional and economic impacts on a child and their family,” Ms Whittaker said.

“The death of a child with a life-limiting illness can also profoundly alter a family’s trajectory, leading to prolonged disadvantage and disengagement.

“At Hummingbird House we aim to provide true choice for families about the care they receive, through support that is personalised to their experience and needs.”

Bear Cottage, Hummingbird House and Very Special Kids are the only children’s hospices in their respective states, providing specialised care to children and young people with life-limiting conditions.

About Hummingbird House

Hummingbird House is Queensland’s only children’s hospice. We provide specialised paediatric palliative care services and perinatal hospice care to babies, children and young people with a life-limiting condition, helping them make every moment precious when time is short.

Families can choose to access our services at our purpose-built home away from home in Brisbane, or in their home or community. Our services include short break stays, crisis or symptom management, family support, allied health, end of life and after death care and grief and bereavement counselling.

More info: Donate to help families caring for a child with a life limiting condition. (hummingbirdhouse.org.au)

Main image – staff and carers celebrating the 7th anniversary of Hummingbird House