An urgent transfer meant the young man's family did not have a chance to say goodbye to him before his death. Photo: 123RF
The family of a teenager who died from complications after an operation never got the chance to say goodbye.
They were further distressed by being told they needed to organise his body's repatriation to his hometown.
A complaint about the 19-year-old's care was referred to Health and Disability Commissioner by the coroner.
The young man - who died in 2015 - had undergone an operation in January that year related to his type 2 neurofibromatosis - a genetic condition that causes benign tumours to develop on nerves, particularly those in the skull and spine.
There were complications due to a post-operative infection and meningitis, which was treated successfully at a secondary hospital.
The man - who was referred to in the commissioner's report as Mr B - continued to suffer from fluid building up around the brain and required regular release of cerebrospinal fluid through lumbar puncture.
He was admitted to hospital with ongoing headaches and vomiting in April.
A decision was made to hold off on further lumbar punctures due to concerns it could cause a hernia and to transfer him to another hospital via an air retrieval team.
The transfer was delayed due due to staffing issues and a lack of an available air ambulance.
Deputy commissioner Dr Vanessa Caldwell said at the time Mr B was neurologically stable and his transfer was scheduled for the next day.
However, while waiting he collapsed and his heart stopped.
He was then urgently transferred to another hospital, but his condition deteriorated and at the second hospital he was declared brain dead.
Mr B's family told the commissioner they did not understand why he was not transferred by road when the air retrieval team was not available, and they did not understand why he was transferred to another hospital when his prognosis was poor.
The transfer meant they did not have a chance to say goodbye to him before his death.
The family also said they were asked if they would donate his organs only minutes after being told he was brain dead, which left them little time to consider their options.
They were also told by a social worker it was up to them to organise transport of his body back to where they lived, even though he qualified for travel assistance.
Health NZ apologised for the distress caused by the discussion related to organ donation and the miscommunication regarding transporting Mr B's body.
Dr Caldwell said the care provided to the man was at an appropriate standard and decisions, such as the air transfer, were made appropriately based on the information available to the team at the time.
Incorrect and minimal information was provided to the family once the man died and this had been particularly distressing for them, she said.
She also had concerns about the communication between the air retrieval team and the teams treating Mr B.
Health New Zealand breached the patient's right to information under the Code of Health and Disability Services Consumers' Rights, the commissioner said.
A number of changes had been made since the young man's death, including the establishment of Health NZ, Dr Caldwell said.
"I am also mindful that providing recommendations at this stage for errors that happened some time ago is likely to have limited practical benefit."
She recommended Health NZ Southern and Health NZ Waitaha Canterbury provided a formal written apology for the breaches identified in the report within three weeks.
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