A specialist palliative care initiative for children in the lower North Island says the country is neglecting its sickest children by not having a national service.
Rei Kōtuku founder and paediatric palliative care specialist Dr Amanda Evans has released a report called Unheard Cries – NZ’s Neglect of Palliative Children.
“As a parent you’d be absolutely shocked that if you’re getting a diagnosis of a terminal illness for your child that not only do you have to face that diagnosis, but you also have to face it knowing that if your parent or grandparent needed palliative care… they would get the support that they require but if it’s you and your little one, you simply don’t get that support unless you live in Auckland,” she said.
Starship Hospital in Auckland has the only funded specialist child palliative care service in the country, receiving $977,000 annually, according to the report.
Palliative care is defined by Health New Zealand Te Whatu Ora as care for people of all ages with a life-limiting condition.
The report states it is called Unheard Cries “because these children are dying behind closed doors, often in hospital, with exhausted and devastated parents that don’t know the difference that specialist care could have made”.
The report makes the case for $8 million in annual funding to be provided by the Government to establish regional palliative care hubs for children.
“Nationwide paediatric palliative care will lower the number of hospital admissions as more medical care is provided in the child’s home and shorten the length of these stays as hospital teams often are more comfortable discharging patients with ongoing symptoms and pain if they have access to care in the community,” the report read.
The report estimates the reduction in hospital admissions would save the Government $22 million annually.
Rei Kōtuku was established last year as a three-year pilot programme as a result of philanthropic funding.
Specialist medical, nursing and wraparound support is offered to families from Wellington to Hawke’s Bay. Staff include Dr Evans, whose study included six additional years of specialist training after becoming a doctor, two specialist nurses, and an educational psychologist.
When the programme started, Dr Evans said she and specialist nurse Mary Bond expected to support 20 seriously ill children a year. But in the last year-and-a-half, 70 children have been supported, 30 of whom have died.
“That’s 30 children that we’ve supported during their end-of-life period, so we’ve supported them from a medical perspective… we supported the family from an emotional perspective, practical with equipment and also preparing them for what’s to come,” Dr Evans said.
“Then we also know that all of those 30 children who have died, their parents and their brothers and sisters continue to have ongoing support from our service, from myself, from the psychologist and the nurses that I work with.”
Dr Evans said she feels privileged to have supported these children and their families.
“Kids get scared of leaving their families – we coach the parents on how to manage that fear and how to talk with their kids,” she said.
“If we can do that then I feel really, really proud that we’ve had that opportunity to do that.”
Dr Evans said the report shares the stories of some of these children and the impact the service has had so the Government can see a blueprint of what a national service could achieve.
“They can make decisions whether they fund us or fund other regions in New Zealand to be able to provide care for every child who needs palliative care.”
‘Ring them and they’re always there’
Four-year-old Bella Hampton is one of the children receiving specialist care through Rei Kōtuku.
Her life is limited by the rare genetic neurological disorder Rett syndrome. She cannot walk or talk, and is sometimes fed through a tube. Her family is determined for her to live life to the fullest, and she attends daycare and loves music.
“We can be down, we can be sad, angry, and she’ll be sitting there in her own little world and this deep little laugh will come for no reason,” Bella’s nanny Linda Perry told 1News.
“It just takes whatever the problem was, it takes it away and you end up laughing.”
The pilot project has helped Bella access appropriate medicine, as well as provided guidance on medical treatment and psychological support for the whole whānau.
“I had no idea what I was doing,” Bella’s mum Gabby Capies said.
“I didn’t know anything about what services there were or anything I had to do until these guys came along. Now I’m unsure, just ring them and they’re always there.”
Perry said the support has stopped the whānau second-guessing their thoughts about Bella’s medical needs.
The family recently rang Dr Evans for guidance, during which they were told Bella would require hospital care. The four-year-old ended up being diagnosed with pneumonia.
“Thank God because we would have just kept thinking… giving her the Pamol and whatever else we can get into her,” Perry said.
“If we had have left her at home it would have ended up… I mean, it was serious but it would have ended up really serious.”
Perry said she tries not to think about the possibility of Bella’s specialist care ending, with Rei Kōtuku receiving time-limited funding.
“That day I met nurse Mary. Oh my God, it was like this little butterfly was flapping in my house and I didn’t want this butterfly to go.
“Our sick children, don’t let them die in pain. I mean I don’t want to see Bella die in pain.”
The late James Swan features in Rei Kōtuku’s report, with mum Nicola Swan explaining the impact on the five-year-old and his family of not having access to specialist care.
James developed a neurological and neuromuscular condition at around 2-and-a-half years old. The condition was so rare it was never diagnosed but as it progressed and his abilities became more limited, it was likened to motor neurone disease.
James’ parents took him home from hospital to die but nearing the end of his life, they had unanswered questions about the process and had to watch their son suffer in pain without specialist expertise.
“We needed understanding professionals who could walk us through the realities of a child dying, who could support James with the appropriate medication that was going to keep him comfortable and out of pain rather than us getting to the point where his pain was so high we were having to reach out to say, ‘We need to try something else because he’s in too much pain’.”
Nicola Swan said that without any guidance or even a brochure on what to expert when James died, another person in the community that had lost a child filled the gaps.
“She’s having to relive that trauma of losing her child, trying to support me through now losing our child and really if we had a team, a palliative care team, that’s what they would be doing.”
She questioned why access to specialist care has not occurred for other families outside Auckland in the eight years since James died.
“Every issue is important but these are our children. These are the children of New Zealand and we need to be their advocate and their voice.
“They can’t do that themselves and I honestly believe that if the Health Minister had walked this journey and James was their child, they would not allow this to happen. They would never allow a child and a family to suffer.”
She said the wider family and James’ two older brothers have also been affected by the lack of grief support and guidance.
“Those boys are still suffering in a huge way.”
The current situation
The report states 3000 children with serious illness need specialist palliative care each year in New Zealand, but 75% of this group don’t receive specialist care because they don’t live in Auckland. Of that group, 270-300 children die each year on average.
In a statement, Health New Zealand Te Whatu Ora Planned and Unplanned Care group manager Tim Wood said the care for most palliative children is managed by local services including paediatricians, hospital teams, general practitioners, and occasionally a hospice.
Wood said only some children with complex needs require additional guidance and support from a specialist paediatric palliative care service.
When general paediatricians, general practitioners and paediatric nurses provide palliative care to children, the experience can be less effective because they lack specialist training in this area, according to the report.
Issues can include missing signals that death is nearing for a child; under- and overmedicating, leading to unnecessary pain or over-sedation; and fewer medication options being prescribed, according to the report.
“I get called every single week by families or by clinicians who have had a child die and they’ve died in terrible, severe pain, they’ve died having seizures, they’ve died vomiting,” Dr Evans said.
Woods said Te Whatu Ora acknowledged that children and their whānau across the country “currently experience different levels of access to paediatric PPC”.
“We know this is distressing for those impacted,” he said.
“Given the specialist nature of PPC, providing full palliative care services for children and their whānau in Aotearoa New Zealand is challenging in many parts of the country.”
The report said hospice facilities only support a small per centage of seriously ill children as the palliative care doctor and nurses employed there are trained to care for adults and facilities are not designed for children.
Dr Evans said a person rang her last week about a family wanting their child to stay home to die but this wasn’t possible as they didn’t have the care required for that.
“I know that if we had a service like mine in all of the other regions, in the four regions, then that wouldn’t be the case.”
Govt awaiting recommendations
Wood, Te Whatu Ora’s Planned and Unplanned Care group manager, said Health NZ is committed to ensuring palliative and end-of-life care is effective for all New Zealanders and their whānau.
Last year, a work programme to develop a nationally consistent approach was established by the government agency.
Recommendations for a paediatric model of care were developed this year by experts – including Dr Evans – as well as whānau and sector members.
The report will be delivered to Health Minister Shane Reti after public feedback is sought early next year and recommendations are finalised by the steering group.
Wood stated feedback is being sought “to help us ensure any new services are well integrated, supported, effective, and sustainable long term”.
“Additional funding for paediatric specialist palliative care services has not been secured to date as the funding and implementation requirements for this work will not be known until the feedback process has been completed.”
Wood said Health New Zealand appreciates the work the sector has done to highlight challenges with paediatric palliative care and improve services.
In 2001, when palliative care services were the responsibility of the Ministry of Health, a strategy was launched with a vision for all people who are dying – and their family, who could benefit from palliative care – to have timely access to quality services that are culturally appropriate and provided in a coordinated way.
In 2012, one of the recommendations in a report commissioned by the ministry was to “develop terms of reference and establish a National Paediatric Palliative Care Network”.
1News asked Reti why successive governments have not provided funding.
“Look, that’s a question across multiple governments and it’s challenging to look back and say why that might be the case,” he said.
The minister said a working group “was brought up and from that, recommendations will follow” after a national review of palliative care across the country was carried out last year.
“So we are paying attention to it here now.”
Reti said expert guidance is required to “tell us where we can best apply ourselves to give people the best outcomes” and he is waiting for the final report from the steering group.
“We’ll need to have discussions with officials and with the sector and look at capacity to implement what parts of that report we can implement.
“I would expect those will be discussions that will go into that first quarter of next year. It’s my expectation.”
Reti said health funding is prioritised on a range of measures, as is the case for drug buying agency Pharmac and other government agencies.
“At the end of the day, all of those measures are seeking to get timely access to quality health care. That is what my Government policy statement says and that’s what all of those measures will be measured against.”
Reti said he understood the challenges of families who are dealing with terminal illness and palliative care of a child from his time as a family doctor.