The urgent need for a national palliative care service for dying kids

Monday, 25 November 2024

Halfway into its three-year pilot, Wellington’s philanthropy-funded child palliative care service has three times as many patients as expected, showing how many families have been missing out. The chief children’s commissioner supports a call for urgent funding of a new national service for dying children, calling the current situation “untenable, inequitable and inadequate”.

Even after 14 years steering her fragile daughter through the health system, Lisa Hill didn’t see it coming.

No-one told her ‘I think Meg might die today“. And when she suddenly deteriorated at Nelson Hospital, all their carefully laid plans for a peaceful death fell apart.

“There was a huge hole nobody saw, and we fell straight through it … We were all left heartbroken ‒ her paediatrician, the nurses, hospice. Because we all felt like we failed Meg. Because she didn’t have a good death. She suffered. And I had to watch her suffer.”

Hill wants to remember the plucky little twin who survived at just 25 weeks gestation, but suffered a disabling infection and brain injury. The special soul who loved being hooned around in their old Mini, and brought out the best in people.

But three years on she’s still upset by the memory of that distressing death. Which is why she’s determined no-one else should suffer the same trauma.

Meg’s story appears in a new report by Wellington paediatric palliative care pilot Rei Kōtuku, called Unheard Cries: New Zealand’s Neglect of Palliative Children.

It points out that, like Meg, three out of four dying children do not get specialist help, because the only publicly funded specialist palliative care service is in Auckland.

The report reiterates the urgent need for a funded national service for the 3000 children a year with serious illnesses who need palliative care.

“I just don't understand why we're asking for this,” Hill says. “Because it feels like such a fundamental, essential service that should already exist.”

Rei Kōtuku paediatric palliative care specialist and report author Dr Amanda Evans proposed a national service model two years ago and has been pushing for it since. But nothing has changed, except that the project’s other main advocate ‒ Auckland child palliative care specialist Ross Drake ‒ has moved to Australia.

“It feels like there’s more of a crisis looming,” Evans says. “Knowing how many children are missing out gives me sleepless nights. How is it even possible that we’re turning a blind eye to this?… It feels like we’re in a third world country.”

The one thing that has changed is that the Rei Kōtuku pilot has proved Evans’ proposed hub and spoke model can work. The team of Evans, two clinical nurse specialists and an educational psychologist cover Wellington to Hawke’s Bay, meeting the child and their paediatricians, writing care plans and providing on-call advice.

And with 68 patients in the first 15 months instead of the anticipated 20, it’s shown how many cries have been going unheard.

Evans estimates a national service with four hubs ‒ Northern, Waikato, Central and South Island ‒ would cost $8 million a year. While Hamilton and Christchurch already have partially funded child-focused palliative services, they don’t include specialist paediatric palliative care doctors.

For RJ Abood, Rei Kōtuku was the difference between dying in the care of family at his Ōtaki home and dying in a hospital bed he hated.

In August 2022, the sassy, comedic, TikTok trend-loving 13-year-old was already dealing with the shock news that his mum Maria had incurable metastatic brain cancer. Then he was diagnosed with rare bone cancer Ewing sarcoma.

That left RJ’s sister Jodie Woodman caring for her three young kids, a dying mum and a sick brother in the final stages of his life.

“That was really tough,” the 28-year-old says. “Juggling all the hospital appointments and basically trying to be there for both of them during that really rough time.”

Their mum died in March 2023, and RJ went into remission. But while they were camping at Mangaweka in December, his hip pain returned. The cancer had spread and was now terminal.

“That really broke his heart … From that day we said to him, we are going to do everything in our power to make sure you will not have to be in hospital.”

The one godsend was Rei Kōtuku’s support. Evans organised a meet and greet with RJ’s singing idol SZA; she took 2am calls when RJ had a pain crisis and Woodman was freaking out that she would run out of medication; nurse Mary drove up after-hours to put in a catheter.

“That just made the journey so much easier,” Woodman says. “The way he slipped away was really peacefully. We were all surrounding him, telling him it was OK to go be with our mum.”

Woodman was “really outraged” to discover the service was not publicly funded, and not all families get the same specialist help.

The call for a funded national service is supported by Chief Children’s Commissioner, Dr Claire Achmad.

“The current situation is untenable, inequitable and inadequate. It has been for a long time. It shows that we are still not prioritising children enough in our health system.”

New Zealand does not stack up well internationally, with Britain having 54 child hospices and Australia funding paediatric palliative care in every state, Achmad says.

Funding a national specialist child palliative care service would reduce the “distress and trauma that far too many children and whānau are experiencing right now”, she says.

Health New Zealand group manager of planned and unplanned care, Tim Wood, acknowledges children and whānau have varying access to paediatric palliative care, and that can be distressing.

While providing nationwide specialist child palliative care services is challenging, Health NZ “is committed to ensuring palliative and end-of-life care meets the needs of all New Zealanders”, Wood says.

A national palliative care work programme, which Evans is involved in, will report back next year on possible national care models. But Wood notes no extra funding has yet been secured, as the “funding and implementation requirements” won’t be known until feedback is completed.

Evans fears that, without political backing, the report will go nowhere.

Health Minister Shane Reti says his thoughts are with children facing terminal illnesses and their families, and Health NZ has assured him it is committed to nationally consistent palliative care.

However, when asked if and when the Government would commit to funding a national specialist paediatric palliative care service, he failed to respond.

That’s little comfort to Lisa Hill.

“It’s such a fundamental need for people to die without suffering in this country, and adults get that as their human right. I don’t understand why children don’t.”