Kids Palliative Care in Focus at Action Plan Launch
It’s one of the most confronting challenges imaginable for a child and their family: facing the onset of a life-limiting condition. Now, a national plan aims to break down barriers to care – if it can get the support it needs to keep up advocates’ momentum.
Loughlin Patrick reports.
Emotions ran high at times during the long-awaited launch of the Palliative Care National Action Plan in Melbourne this morning.
Assistant Health Minister Ged Kearney saw the plan over the finish line at Very Special Kids hospice in the city’s south-east. But she noted the federal government funded the plan’s four-year development through a change of party control.
The bipartisan effort saw consultation with healthcare providers and families who’ve faced barriers and fear when seeking support. The fear can emerge from misunderstanding: palliative care doesn’t always mean ‘end of life’.
“So, there’s high degrees of disability,” says Dr Jenny Hynson, who spoke at a panel at the launch. “Those kids will have patches of wellness and then really rough patches over time.”
At least 28 thousand children live with a life-limiting condition and accessing palliative care can be a challenge for many.
One challenge is awareness. It took a nurse in the know to point father Ryan Fowler in the right direction.
“So without her lived experience – even through she was in palliative care and in the social team there – that’s the only reason we found out,” says Fowler, who also spoke at the launch. “There wasn’t much talking about palliative care.”
His son Rio died in 2018. He was 17 months old.
It can be difficult to know how best to care for children like Rio. Many parents can face an uphill battle advocating on their child’s behalf.
The action plan aims to change that. Its first priority is actively involving children and families in the palliative care process.
“Many of them are very little and unable to speak for themselves,” says Dr Hynson. “We may not always have the [literal] voice of the child, but when we’re having conversations with families, we have to hear and focus on the voice of the child.”
Those conversations can be confronting to have. Fowler says starting palliative care felt like ‘giving up’ at first.
“We guide our kids, but when you’re told they’re not going to survive, they sort of take it out of your hands and you don’t know where to go,” says Fowler. “I think this plan helps us to come together.”
So, how can doctors and families involve children with life limiting conditions in their own care?
“It doesn’t have to be about the fact they’re going to die,” says Dr Hynson. “We can listen to them about their experience.”
“What was it like for them when they were in ICU? What’s important to them? Where they want to be. Because that can really guide both us and the parents in making decisions.”
The plan also acknowledges palliative care can happen in a range of regularly changing locations, from hospitals to the home. There’s also a limited number of children’s hospices around Australia – mostly in big cities, not the regions.
Bear Cottage is the only hospice of its kind in New South Wales. It supported the Fowler family through Rio’s care.
“They had us all over for Christmas – they had Nan and Pop,” says Fowler. “They looked after us no matter what. And they said, yeah, everyone’s there. And my daughter was able to be with her brother up until the end.”
Now, what happens next? Each of the plan’s 18 actions are time-bound, with targets for within the next five years. But they’ll take state and federal support to implement, and the plan itself notes it doesn’t reflect current government commitments.
For now, Dr Hynson’s biggest takeaway from the plan is the plan itself.
“Firstly, that it exists!” she says. “[The plan] is a real marker of maturity of this area of clinical work. But I think [another takeaway is] having the families so closely involved in its development and trying to make sure we continue that – because that really grounds it.”
A big plan to make things a little easier for children facing a difficult time.
If this story impacted you, call Griefline on 1300 845 745 or Lifeline on 13 11 14. In an emergency, always call Triple Zero (000).