When a young person moves from paediatric to adult palliative care, they're leaving behind more than a setting. A new resource, Navigating Transition in Palliative Care: Empowering Young People -— A Healthcare Professional's Guide, aims to help health professionals make that transition easier.  

“I knew that in the adult system, Madison's care was going to be pieced across different hospitals,” Traci says. “That was quite overwhelming.”  

Traci had spent years getting to know the team at the Children's Hospital, where her daughter Madison had been under the care of specialists who knew her history, her needs, the complexity of the neurological condition that shaped every aspect of her daily life. When the time came to leave, she wasn't ready.  

What Traci describes, the safety of a known world giving way to something unfamiliar, is an experience shared by thousands of Australian families. In 2021, nearly 29,000 children and young people in Australia were living with a life-limiting condition, and with advances in medicine, more are now surviving into adulthood, arriving at health services that were never quite built with them in mind.

Two worlds, one young person  

Dr Naomi Katz has seen the gap between these two worlds. She works across both paediatric and adult palliative care, and has watched what happens when a young person crosses between them without the right support.  

“In paediatrics, care is very much family-centred,” she says. “Parents play a big role in conversations and decisions. In the adult world, the young person is typically central, and sometimes parents might not be included at all. For families used to a particular way of care, that can be quite abrupt and may not actually reflect the young person’s preferences.”  

The consequences of a poorly managed transition can be immediate. Naomi has seen it in her own practice. “Young people can tell when a clinician has taken the time to understand their history. And they can tell when they haven’t,” Naomi says.  

It’s a gap the Shaping the Future of Paediatric Palliative Care Project has worked to address.  

Naomi was part of the working group that helped shape its new resource, Navigating Transition in Palliative Care: Empowering Young People — A Healthcare Professional's Guide, which is designed to help clinicians approach transition with the care and preparation it deserves. The experience, she says, reinforced something she already knew from her own practice. “The key thing is not making assumptions,” she says. “Taking the time to get to know young people, what works, what doesn't work for them, who they want involved in their care, and respecting them as people.”

What doesn't make it into the file

Someone’s history isn’t only wrapped up in their medical records. What matters most in handover, Naomi says, is often what’s hardest to document. “It’s the nuanced things. The family’s values, their fears, their communication style, what’s already been tried. Families and young people carry years of knowledge about what works for them. We don’t always have to start from scratch, if we take the time to ask.”  

The GP is another person who frequently gets left out of the process entirely, despite playing a central role in the adult system, says Naomi. “Making sure the GP is part of handover conversations is really important,” Naomi says. “It often gets missed.” 

Readiness isn't an age

A key message in Navigating Transition in Palliative Care: Empowering Young People — A Healthcare Professional's Guide is that transition planning should follow a young person’s readiness, not their birth date. It’s something Naomi feels strongly about.  

“Chronological age doesn’t tell us whether a young person is ready to take on responsibility for their health,” she says. “Some arrive in the adult system ready for more independence, and haven’t always had the chance to exercise it in a paediatric setting where parents are closely involved. Others want their families beside them at every appointment, for reasons of their condition, culture, or preference.”  

She’s looked after young people in the adult system who preferred their parents as the primary contact, who wanted to be brought into conversations gradually rather than all at once. “We shouldn’t assume,” she says. “We should ask.”  

It's something Traci experienced during Madison's transition. Palliative care was actively involved across multiple adult teams, advocating for Madison and ensuring her needs weren't lost in the complexity. 

Traci's advice to other parents is to get used to being the voice. “Have conversations that might be difficult. Educate yourself early so you don’t get caught by surprise,” she says.   

Feeling seen

One family whose daughter experienced this transition left a wish in the pages of the resource: 

“We wish our daughter and sister had been afforded the opportunity to move between paediatric and adult palliative care with true empathy, deep understanding, and full regard for her dignity. We would have wanted her to feel truly seen, cherished, and supported, while our entire family is cradled in care, tenderly nurtured, and never alone, walking together through every fragile, precious step of her journey.” 

It’s something Naomi comes back to in her own practice. “It’s about taking the time to focus on the young person as a person. Not the medical condition. Their values, what brings them joy, what they’re afraid of, who matters to them.”  

“Young people have been able to tell us a lot about what's important to them, how they'd like their care to be provided. There are opportunities for us to learn, and to look after young people in a way that aligns with their and their loved one’s wishes.” 

It’s what the resource was built for.