‘It’s just so not right’
The postcode lottery for care of dying children If 5-year-old James Swan had died in Hamilton, his family would have had amazing end-of-life support. Instead, in Wellington, they floundered. Specialists have a plan to ensure no-one else misses out because
James Swan’s parents were already drowning in questions that had no answers. Why was their boy’s body failing him, backsliding from walking to wheelchair-bound? What was the rare neuromuscular condition gnawing at his brain? How long did they have?
But to have no-one to ask the questions that did have answers heaped unnecessary stress on top of the unthinkable trauma of dealing with a dying child, mum Nicola Swan says. Will he hear us as he takes his last breaths, she wanted to know. What do we say to his brothers when they ask: ‘Is this going to happen to me?’
The hospice said it couldn’t help because James was too young. And because it wasn’t cancer, he missed out on all the support that comes with that diagnosis.
Worse still, he lived in Wellington which, in 2018, had no specialist palliative care for children. ‘‘There was nothing. We were left to flounder,’’ Swan says.
‘‘We were the full-time carers, 24/7, right through the night. There were days and days of no sleep. So trying to parent through that, and then parent siblings through the fact that they’re watching their brother die in front of them, and have nothing to turn to.
‘‘It’s stuff people don’t want to talk about, but it is reality, and we can’t get away from it. Death happens, and to think it’s OK to just let parents fumble their way through it is just appalling.’’
The Swans have now set up a charity, The Swan Nest, to provide free therapy for children with complex or terminal illnesses.
While considering ways to help, Swan visited Hamilton charity True Colours, one of two special child palliative care services in that city. She could not believe the gulf in support.
‘‘I was heartbroken to think it’s a postcode lottery. If we lived there we would have had the most unbelievable support. But we live in Wellington, the capital city, and we had nothing.
‘‘That was really hard. Because it would have been a completely different experience, particularly for the siblings left behind.’’
The postcode lottery
A 2012 review found palliative care services were inequitable and ‘‘highly variable’’ and recommended a national network to plug the gaps.
But 10 years on, experts say little has changed. Paediatric palliative care specialists Dr Ross Drake and Dr Amanda Evans have written to the new national health authority to plead for urgent funding for a national service to solve ‘‘longstanding and unaddressed issues with access to care, inequity of care, and lack of sustainability’’.
New Zealand still has just one specialist paediatric palliative care team, based at Auckland’s Starship hospital. It’s made up of two specialist doctors, a nurse practitioner and nurse specialist, a social worker, a child and adolescent psychiatrist and a child psychotherapist. It hasn’t grown in 15 years, despite population growth. In theory, as well as caring for dying children from around Auckland, the team also provides advice to the rest of the country. In 2021, it cared for 131 patients (of whom 49 came from outside the region). All on a budget of $985,000.
The 2012 review found the service was not recognised or funded as a national resource. There’s also no funded afterhours support.
‘‘We haven’t even really got the basics right,’’ says Evans, who joined Wellington’s Mary Potter Hospice in January 2021.
‘‘I would describe it as inequitable and inaccessible for most of the children who have palliative care needs throughout New Zealand.’’
Outside Auckland, services are ‘‘piecemeal and unplanned’’, Drake and Evans say.
Hamilton has True Colours and the country’s only childfocused hospice, Rainbow Place. Evans is the only specialist in Wellington, but her role still mostly covers adults and her quest for funding for a regional child service has stalled.
Christchurch has a part-time paediatric oncologist with palliative care expertise and two clinical nurse specialists. Dunedin has one specialist with child experience.
Dr Tess Moeke-Maxwell (Ngā i Tai ki Tā maki and Ngā ti Porou), who researches palliative care on behalf of the Kā hui Kaumā tua of Auckland University’s Te Ā rai research group, also questions the support for dying babies.
When Moeke-Maxwell’s daughter Racheal was about 20 weeks pregnant, she discovered her baby had restrictive cardiomyopathy and could die during pregnancy or birth or, at best, could live for a few months. The doctor said palliative care nursing support could be arranged.
But when Te Minaora was born at her Bay of Plenty home, in April 2020, nothing had been organised. Moeke-Maxwell says Te Minaora’s parents were given morphine, but with insufficient instructions. So when the baby’s back arched like a rainbow in pain, Racheal called a
supposed emergency
number, only to then be put on hold.
‘‘It was awful for my family,’’ Moeke-Maxwell says. ‘‘There was no palliative care support at home. They were just kind of left, and it’s not right.’’
Moeke-Maxwell says she has since discovered others with similar stories. While her family’s experience was complicated by the Covid-19 lockdown, and better support would have been available in hospital, parents of dying babies should have access to palliative care support at home.
Moeke-Maxwell, Drake and others have been awarded funds to develop a paediatric palliative care training programme.
Evans says caring for dying children should not be a postcode lottery. ’’It’s the injustice. It’s just so not right.’’
What does a good death look like?
When Wellington teenager Jemima Gazley was diagnosed with inoperable brain cancer in February last year, her parents Ray and Oliver were told to talk to palliative care.
They put it off – hospices were for old people, Oliver reasoned.
So when they finally contacted Evans about four months before Jemima died, knowing that she specialised in children was ‘‘massive’’.
Evans would visit their home, every week, sometimes twice a week. She talked about dying, and about quality of life. She answered questions they didn’t know to ask.
‘‘Jemima wrote a document with Amanda about how she wanted to be heard, be seen, be spoken to,’’ Oliver says.
‘‘Because, for so many people to come around and be upset and sad, Jem didn’t need that. So rules were put in place. That was the stuff you don’t think of, but Amanda did.
‘‘Some of the convos we had to have, about how she wanted to die, and the funeral, all these things that a 15-year-old should never, ever have to go through. Amanda helped us go through all of that.’’
Child palliative care specialists provide pain and symptom relief, measured to tiny doses. They’re used to prescribing – and switching – opioid drugs.
But they also provide the gift of time. While general paediatricians do an amazing job of caring for dying kids, they have to juggle that with urgent work, Drake says.
‘‘Palliative care is about the physical, emotional and spiritual, and the added thing for children is the family, whā nau.
‘‘Just being present, without a time agenda, you can be with the family for however long it takes. That enables conversations that perhaps would be more difficult to get.’’
When Evans interned with Drake as a medical student, she spent a lot of time crying. But you develop coping mechanisms, she says: ‘‘We’re used to helping with decision-making. We’re used to sitting in the shit. And we don’t need to run away. We’ve developed the tools over time to be able to walk alongside whatever comes.’’
Research suggests good specialist palliative care can actually reduce health costs.
Drake points to a Canadian study which found that, in their last year, children in a region with specialist child palliative care had 27% fewer healthcare days, 46% fewer intensive care days and an overall 29% drop in healthcare costs.
‘‘Those are quite striking figures when you’re looking at a healthcare system very similar to ours,’’ Drake says.
On those numbers, the cost of acute and home care for the 289 children who died in New Zealand in 2020 could be cut from $29.3m without specialist paediatric palliative care to $20.8m with.
Nothing can erase the pain of losing a child. But for Jemima’s family, having in-person, child specific support made the process easier, Oliver says.
’’You need a relationship with somebody that is going to visit your house, check on your family, make sure your motherin-law that’s visiting is OK as well. That can’t be done on a zoom call from a person in Auckland. That’s absolute BS.
’’Amanda gave Jemima a good death,’’ Oliver says, choking up. ‘‘ . . . she gave Jemima a voice, and it was so important, for us and for her.’’
But, as Evans puts it, ‘‘specialist paediatric palliative care is not a team of one’’.
How would a national service work?
Evans previously worked in Australia, which shares New Zealand’s problem of a spreadout population. But she believes it also holds the solution.
In Melbourne, Evans’ team would get referrals from farflung spots and meet the child and family wherever they were. They worked with the local health team to provide education and a plan for that family’s specific needs, and then gave oncall support.
‘‘That really worked. Often during the day I would be on the phone talking to adult community nurses who were out in the middle of Bendigo or even Tasmania and walking them through.
‘‘They’d be my eyes, but because I’d already met them, we had such a strong relationship and I could easily give them any symptom management plans and the support they needed to provide the care for the families.
‘‘It kind of breaks down that whole postcode lottery, because you’ve always got specialist reach.’’
Evans and Drake propose three regional paediatric palliative care hubs to support doctors and nurses in smaller centres. Auckland, Wellington and Christchurch would each need at least one specialist doctor, a nurse specialist, social worker, psychologist, bereavement coordinator, admin support and care co-ordinators. There would also be a Mā ori liaison worker and education co-ordinator.
While about 350 children die annually from terminal illnesses, about 10 times that number live with life-limiting conditions that could benefit from palliative care.
Drake estimates a national service would cost less than $10m a year. For context, the Government set aside $11.9m to fund assisted dying for an estimated 350 Kiwis a year.
Evans tried to get funding for a service for the Wellington region, but says she was told it was not a funding priority.
Peter Guthrie, Health NZ’s Wellington planning and performance strategy acting director, says they have been working to better understand the need for paediatric palliative care. The work is ‘‘in its very early stages’’, and is ongoing.
Children’s Commissioner Judge Frances Eivers says Evans’ model of remote training and support from regional hubs seems an effective national solution.
‘‘No-one would disagree that all children in the final stages of life should ideally receive the appropriate child-expert palliative care. Not only is this consistent with article 24 of the Children’s Convention, it’s simply the right thing to do,’’ Eivers says.
Nicola Swan believes every main centre should also have a child-focused hospice similar to Hamilton’s Rainbow Place.
‘‘It shouldn’t be a privilege to have support when your child is dying, but that’s what it felt like. We should be proud of what we’re offering. We should be amazing, and we’re not. We’re appalling with how we do palliative care for kids. Unless you’ve got cancer.’’
Hamilton’s Rainbow Place looks after more than 50 children with life-limiting illnesses, providing respite for families, nursing support and sending healthcare assistants into homes to spend time with siblings.
Hospice Waikato chief executive Craig Tamblyn says it costs about $450,000 a year.
‘‘We wrap the palliative-care cloak around the families and other siblings that need support. That’s the important part.’’
Asked if it plans to address inequity in child palliative care services, the Health Ministry says the current system of general paediatricians supported by advice from Starship’s child pain team ‘‘provides a service for children across the country’’.
However, the new national health body would provide ‘‘opportunities for national service planning and sustainable funding models’’.
Evans says people don’t want to consider children needing palliative care. ‘‘Your heart breaks . . . people want to look away and don’t even want to think about this being a thing.
‘‘But if we’re by the bedside, there’s a lot of joy, there’s a lot of life that comes from these relationships. So don’t look away. Because we actually need to get it right.’’