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Starship hospital informed senior doctors in February that theirsole specialist would be unavailable for two months until April. Despite attempts to find a replacement, one has not been found.
The specialist’s absence exacerbates what one expert has labelled a “children’s rights issue”, where many children who need palliative care do not receive it due to lack of resourcing.
“The current situation is untenable, inequitable and inadequate,” Children’s Commissioner Dr Claire Achmad told RNZ.
The country’s only publicly funded paediatric palliative care specialist is on extended leave. Photo / 123rf
A Starship memo stated that while other functions would continue while the specialist was on leave, “prescribing capacity” – the availability of doctors to give out specialist pain medication – would be affected.
RNZ understands Starship management asked general paediatricians to temporarily fill the role, but they were reluctant because they did not have specialist training in the area.
Clinicians have instead been directed to follow the hospital’s palliative care guidelines for prescribing medication, with severe cases referred to acute pain specialists.
Health New Zealand Te Whatu Ora said Starship was using its wider clinical team to ensure children have medications for managing pain.
Specialist: The field requires years of specialised training
The only other paediatric palliative care specialist in the country, Dr Amanda Evans, said the field required years of specialised training and cannot be adequately covered by other specialities.
Evans – who works for Rei Kōtuku – a charity funded by a single anonymous donor covering the lower half of North Island, compared it to paediatric oncology.
She said that adult oncologists would not be expected to treat children with cancer, just as general paediatricians should not be expected to manage complex palliative care.
“In paediatric palliative care the drugs we use are highly specialised, so I would not expect my colleagues to prescribe them, like I would not prescribe chemotherapy,” Evans said.
A report by Rei Kōtuku – Unheard Cries – estimates 3000 children a year need palliative care, but 75% do not receive it because they do not live in Auckland.
A nationwide palliative care service would cost $8 million a year to run, but would save $22m in fewer hospital admissions, it estimated.
Study: Dying kids missing out on ‘basic rights’
A recent Auckland University study published in the New Zealand Medical Journal found dying children were missing out on the “basic right” to end of life care, and Starship’s palliative care team was “small and vulnerable to workforce pressures”.
Jasmine MacGibbon, whose son Caiden died from a brain tumour in November while under Starship’s care, said the small team meant help was not available when they needed it most.
“We could call them during business hours only, Monday to Friday, because there were only three of them on the team, with one doctor that could prescribe medications,” MacGibbon said.
“Even then, you had to leave a voicemail message and wait for someone to return your call. So if your child was in distress there was no quick fix.”
After hours, they were told to call the oncology ward, the emergency department or an ambulance for help.
“We had to call the ambulance out quite a lot in his last week of life, especially over his last 10 hours of life,” MacGibbon said.
“We had three different ambulance officers out the evening he died. He had a very distressing 10 hours of life in those final hours. We were so scared.”
MacGibbon later raised her concerns about her son’s death with Starship.
“They actually agreed. They said they are having the same battle with trying to get better care for these kids. It all comes down to funding.”
It was concerning there was even less help available now, she said.
“If I was going through the same thing now and I knew that, I would be really distressed.
“Adults have 24-7 hospice care. These kids deserve the same care as adults, and they have been neglected and denied. It’s discrimination in my eyes.”
Health NZ actively recruiting
Achmad said all children have the right to the highest attainable standard of healthcare, including expert pain and symptom management for terminally ill children.
“I want to see this aspect of our health system properly resourced as soon as possible, so that all children and whānau who need paediatric palliative care are effectively supported through this extremely challenging journey.”
Achmad said other countries, such as the United Kingdom, make paediatric palliative care available as part of their health system.
In addition to the absence of the specialist doctor, a clinical nurse specialist within Starship’s paediatric palliative care team is also set to leave.
Health New Zealand said it is actively recruiting for additional specialist doctor and nursing roles.
“This is a highly specialised field, and therefore recruitment can take time,” Auckland City Hospital group operations director Michael Shepherd said in a statement.
A national review of paediatric palliative care was also under way.
“A working group has developed advice on potential future options for nationwide care services, and this will soon be shared with stakeholders for feedback. After feedback has been received, a preferred option will be considered by Health New Zealand,” Shepherd said.
In 2012, a report commissioned by the Ministry of Health recommended a National Paediatric Palliative Care Network be established.
RNZ asked Health Minister Simeon Brown whether he would consider funding a national service. Brown said there was a review of a national paediatric palliative care service ongoing, and that he was aware children and their families could experience different levels of access to paediatric palliative care across the country.
