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.
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.”
The current situation
Starship Hospital in Auckland has the only funded specialist child palliative care service in the country, receiving $977,000 annually, according to the report.
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."
