“Kindness alone is not enough”: The push for paediatric palliative care reform in the ACT

Posted on 11 May, 2026

For Yvonne Anthoney and her family, having access to paediatric palliative care in the ACT would have changed everything.

It would have meant they could have stayed together as a family, instead of living across two cities to care for their daughter, Dainere.

It would have meant stability for their other children. It would have reduced the financial strain that led to the loss of their home. And it would have meant being present for Dainere when she needed it most.

“Not divided, not stretched across distance, but together,” says Yvonne.

“When Dainere chose to die at home in Canberra, that choice mattered deeply.”

Since her death in 2013 at the age of 15, Dainere’s family has tirelessly been advocating and fundraising for brain cancer research through their non-for-profit Dainere’s Rainbow. Now, Yvonne is adding her voice to another important cause: children’s end-of-life care.

On Wednesday 13 May, Yvonne will be joining Palliative Care ACT to bring together families, clinicians and the community for an urgent public conversation about strengthening access to care for children with life-limiting conditions in the region.

The event, Shape the Future of Paediatric Palliative Care in the ACT, will highlight the critical gaps in local paediatric palliative care services. According to Palliative Care ACT, as recently as 2025, families were unable to bring their child back to Canberra to pass at home.

While this has now changed, Yvonne says that more still needs to be done.

“No family should ever have to discover what is missing in care at the very moment they need it most.”

“Palliative care for Dainere was not introduced at diagnosis. It came later, when her cancer had spread to her spine and there were no further treatment options available. The focus then shifted to comfort and quality of life.”

“We were supported in Canberra by compassionate and dedicated professionals, and I will always acknowledge the care and humanity they showed us. They did everything they could within the limits of what existed at the time.”

Explaining that “kindness alone is not enough without specialised paediatric expertise”, Yvonne says that during that time, there was no dedicated paediatric palliative care service in the ACT.

After learning that Dainere had a brain tumour and had flown to Sydney as soon as possible for treatment, Yvonne resigned from her job and relocated to Sydney from March to December in 2009 to be with her daughter.

Her husband remained in Canberra to work and care for their other children, but the practical reality was relentless.

“To have to leave your home when your child is dying is something no family should ever, ever be asked to do,” says Yvonne.

“The financial strain was significant. I had no income, and despite support systems, the costs continued to build. We had already sold our home and had to use those funds to cover living expenses alongside the loss of income. There were times I went without meals.”

“What stays with me is not just the logistics, but the complete restructuring of what it means to be a family under extreme pressure.”

These are the realities that Shape the Future of Paediatric Palliative Care in the ACT will explore.

Featuring paediatric clinicians alongside families with lived experience of caring for a child with a life-limiting condition, speakers will also discuss what it means for children and families when end-of-life care cannot be provided close to home.

“Events like this bring lived experience into the centre of system change,” explains Yvonne.

“Our experience, alongside that of another Canberra family, helped highlight a clear gap in paediatric palliative care in the ACT. It was not just about what was missing, but what that meant for families in real time.”

The Canberra community is invited to attend to hear directly from speakers and contribute to shaping a more responsive and compassionate local system of care. The hope is that the forum will lead to a meaningful system change.

And while she wishes “without a doubt” that Dainere had access to paediatric palliative care in the ACT, Yvonne acknowledges that lived experience like theirs can influence progress – but it has been hard won.

“What happens next is not uncertain. It is a matter of will.”

“It is a decision about whether we continue to accept a system that responds too late and remains fundamentally inadequate for children and their families, or whether we build one that provides coordinated, specialised, and compassionate care from the very beginning,” she says.

“This is a defining moment for the ACT. Lived experience, evidence, and opportunity are now aligned.”

The Anthoney family’s experience didn’t end with Dainere’s care – her life continues to shape and inspire everything they do. Their advocacy has contributed to the establishment of a specialised paediatric palliative care nurse in the ACT, and they continue to share their experience through the co-design of paediatric palliative care resources and participation in workshops to improve how care is delivered. Yvonne will be continuing this work with Shape the Future of Paediatric Palliative Care in the ACT.

“Everything we do is driven by the same purpose. To ensure that no family is left navigating a fragmented system at the most critical time in their lives,” she says.

“Every child deserves care that is compassionate, coordinated, specialised, and close to home.”

The event is free to attend, with registrations required for catering purposes. For more information about Dainere’s Rainbow and its work, visit daineresrainbow.com.au.