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Know the Right Time - Why timely referral matters
by Sarah Vercoe
Thursday, October 16, 2025
“I would like for doctors to see that they are actually helping families so much by doing these early referrals.” — Nadine Gale
When Nadine Gale was told her newborn son Archie was dying, she was barely able to sit up in her hospital bed, struggling with severe mastitis while a team of clinicians crowded into her tiny room to deliver the most devastating news a parent can hear.
Days later, a palliative care team arrived. “I had no idea what palliative care was,” she says. “I’d never heard of it before.”
When Nadine researched Bear Cottage, the children’s hospice recommended for Archie, her first reaction was a negative one. “I thought ‘there’s no way he is going there’,” she says. He was meant to be going home with his family, not going to a hospice to breathe his last breath.
But that early referral was a gift, Nadine says now. Although she initially resisted it, Bear Cottage would come to be the most important source of support during Archie’s short life.
Across Australia, healthcare professionals grapple with when and how to refer families to paediatric palliative care.
Now, a newly developed timely referral decision-making guideline tool aims to address this issue.
The tool, which took over 18 months to develop through collaboration between an Advisory Group and Writing Group of health professionals and consumers like Nadine, responds to the critical gap, confirmed in literature reviews.
Annette Vickery PCA Projects Manager, who managed the tool’s development, explains that the process involved specialists across multiple disciplines. “We had neurologists, oncologists, cardiologists, paediatric palliative care teams and consumers all working together,” she says. “It was crucial to have that breadth of expertise.”
The tool prompts reflection across five key areas: condition and referral types; progression and management of conditions; child and family needs; service considerations; and clinician reflection.
“Rather than relying on a set number of indicators, we want clinicians to consider how the overall picture points to unmet needs or growing challenges,” Annette says. “It’s designed to guide conversations, support reflective thinking and ensure families have access to the right support at the right time.”
Three key messages underpin the tool:
Nikki Ritchie, a Sporting Chance Clinical Nurse at Queensland Children’s Hospital who has worked in oncology for close to a decade and played an instrumental role in developing the tool, has seen both sides of the referral equation. She knows on an intimate level just how important it is to have a timely referral.
“We’ve had a child be referred the day they were going to die,” she says, “which is incredibly late.”
When referrals come too late, families miss out on more than medical support. “Symptom management has always been good, but it’s all those other things,” Nikki explains. “It’s experiences and quality of life.”
On the flip side, Nikki’s seen how early referral can transform a family’s journey. She recalls one rural Queensland family whose son continued oral chemotherapy while parents explored treatment options overseas.
“The palliative care team helped get him home, set up community support, and provide experiences,” she says. “They had beautiful memories together while he was well.”
Without that early referral, the family may have had to remain in Brisbane, separated from their community and support systems.
The hesitation to refer often stems from a fundamental misconception: that referral to palliative care means failure as a doctor.
It’s something Nadine, who participated in the tool’s development, observed during the development process. “I found it really bizarre that doctors don’t like to refer people to palliative care, because for them, it’s a failure,” she says. “But for me, I think it’s a failure if it’s not done soon enough, because then people don’t have the resources that they need.”
When Archie was referred to Bear Cottage, that early palliative care involvement opened doors Nadine hadn’t even known existed. “It was so nice to just be around other people that just kind of understood and just got it,” she says. “To have people around you that get it, that’s absolutely priceless.”
It also allowed space for Nadine to be ‘just a mum’.
“You’re able to take a moment and go for a walk and be a normal person and not have to worry about the medical side of things. You’re able to sit with your child and just spend normal time not being a nurse as well as a mum.”
A key principle underlying the tool is that introducing palliative care early matters, even when families aren’t ready to accept it immediately. “Even if people are pushing back on a referral, it is in the back of their mind,” Nadine says. “They are going to look, they are going to research, and hopefully they’ll see that it’s not a scary thing, that it’s a beautiful thing. The earlier that you do it, you’re giving them more time to get their head around it.”
Nikki explains that early introduction also helps create a foundation for when families do need support. “It doesn’t mean you can’t still try treatments, but having the palliative care team introduced earlier helps develop rapport between the family and the team. That way, when things do become quite stressful, it’s not some group of new people just sweeping on in.”
At a time when so much feels out of their control, early referral gives families back a measure of choice.
“I would like for doctors to see that they are actually helping families so much by doing these early referrals. The more they delay, the less time that families have to live life outside of hospital.”
“Palliative care isn’t scary. It’s absolutely beautiful. Doctors honestly have no idea the gift that they give families by taking that step and letting them enter that world in a timely manner.”
With one in three children currently spending less than one month with palliative care support, the timely referral tool aims to change that statistic. “It doesn’t mean you have failed as a doctor. It doesn’t mean anyone has given up,” says Nikki. It’s an invitation to take that step earlier, with confidence.
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