Jasmine MacGibbon, whose son Caiden died of a brain tumor in November, said his son’s final hours were “distressing” due to lack of palliative care.
Photo: MACGIBBON Provided / Jasmin
Fears are growing that children who die are not receiving the end -of -life care they deserve while the only pediatric care expert in the country is on public license.
The Starship Hospital informed senior doctors in February that its only expert would be unavailable for two months until April. Despite attempts to find a substitute, it was not found.
The expert’s absence exacerbates what an expert called the “issue of children’s rights,” where many children who need palliative care do not receive it due to lack of resources.
“The current situation is unsustainable, unequal and inadequate,” Children’s commissioner Dr. Claire Achmad told RNZ.
A stellar ship memorandum stated that while other functions continued while the expert was on leave, “prescription capacity” – the availability of doctors to provide specialized pain medications – would be affected.
RNZ understands that Starship Management asked the general pediatricians to temporarily fill the role, but they were reluctant because they had no specialized training in the area.
The doctors were instructed to follow the hospital palliative care guidelines to prescribe medications, with serious cases referred to acute pain specialists.
Health New Zealand said Starship was using its wider clinical team to ensure that children have drugs to manage pain.
The only other pediatric palliative care expert in the country, Dranda Evans, said the field required years of specialized training and cannot be properly covered by other specialties.
Evans – who works for King Kōtuku – an institution of charity funded by a single anonymous donor that covers the lower half of the North Island compared to pediatric oncology.
She said that adult oncologists are not expected to bring children with cancer, just as general pediatricians should not be expected to manage complex palliative care.
“In pediatric palliative care, the medicines we use are highly specialized, so I would not expect my colleagues to prescribe them, as if I did not prescribe chemotherapy,” said Evans.
A King Kōtuku Report – Unpublished Screams – Estimates 3000 children a year need palliative care, but 75 % do not receive it because they do not live in Auckland.
A palliative service across the country would cost $ 8 million a year to run, but would save $ 22 million in fewer hospital admissions, it estimated.
A recent study by the University of Auckland published in The New Zealand Medical Journal found that dying children were losing their “basic right” to end life care, and Starship palliative care team was “small and vulnerable to labor force pressures.”
Jasmine MacGibbon, whose son Caiden died of a brain tumor in November, while under Starship’s care, said the small team meant that help was not available when they needed it.
“We could call them only during business hours, from Monday to Friday, because there were only three of them on the team, with a doctor who could prescribe medications,” said Macgibbon.
“Even so, you had to leave a voice mail message and wait for someone to return your call. So if your child was distressed, there was no quick solution.”
After the time, they were instructed to call the cancer wing, the emergency department or an aid ambulance.
“We had to call the ambulance a lot in his last week of life, especially in the last 10 hours of life,” Macgibbon said.
“We had three different ambulance officers the night he died. He had a very distressing 10 hours of life at those final hours. We were so afraid.”
Macgibbon later raised his concerns about the death of his son with Starship.
“They really agreed. They said they are having the same battle when trying to take better care of these children. Everything comes down to financing.”
It was worrying that there was even less help available now, she said.
“If I was going through the same thing now and knew that, I would really be distressed.
“Adults have 24-7 palliative care. These children deserve the same care as adults and have been neglected and denied. It is discrimination to my eyes.”
Achman, the children’s commissioner, said all children have the right to the highest health standard, including pain and management of specialized symptoms for children in terminal diseases.
“I want to see this aspect of our health system properly with resources as soon as possible, so that all children and WHānau who need pediatric palliative care are effectively supported by this extremely challenging journey.”
Achmad said other countries, such as the United Kingdom, provide pediatric palliative care as part of their health system.
In addition to the absence of the specialist doctor, there should also be a clinical nurse from the Starship Pediatric Palliative Care Team.
Health New Zealand said it is actively recruiting the specialist doctor and specialized nursing functions.
“This is a highly specialized field and therefore recruitment can take time,” said Michael Shepherd, director of operations at Auckland City Hospital Group in a statement.
A national review of pediatric palliative care was also underway.
“A working group has developed advice on possible future options for service services across the country, and this will be shared soon with stakeholders.
In 2012, a report commissioned by the Ministry of Health recommended that a national pediatric palliative care network be established.
RNZ asked Health Minister Simeon Brown if he would consider funding a national service. Brown said there was a review of a national pediatric palliative care service and that he was aware of children and his families could experience different levels of access to pediatric palliative care across the country.
SUBSCRIBE TO NGā Pytopito Kōrero, a daily newsletter Curated by our editors and deliver it directly to your inbox every day of the week.
