Deputy Health and Disability Commissioner Dr Vanessa Caldwell has called for changes to informed consent processes around allograft surgery. Image / Shutterstock, xmee
A teen who received a bone graft procedure without proper informed consent will get an apology from medical authorities who have also been told to make cultural changes.
The 14-year-old girl fractured her shin bone in June 2023 and was admitted to hospital where she subsequently underwent orthopaedic surgery three days later.
She received bone tissue from a deceased person during the operation.
Her mother completed a consent form for the surgery but later raised concerns they were only told about the use of donor bone immediately before the procedure and were not provided any information on the origin of the bone.
Now the Health and Disability Commissioner has found those responsible for looking after the girl lacked effective communication and culturally appropriate care.
In a decision released today, Deputy Health and Disability Commissioner Dr Vanessa Caldwell said her office had received multiple complaints relating to the informed consent process for the procedures, which highlighted a wider systemic issue.
“Currently, there is no national policy or guidance on obtaining informed consent for the use of allograft bone (tissue or organ transplanted from one human to another who is genetically non-identical), particularly in relation to Māori consumers,” she said in her finding.
A doctor and a hospital have been told to apologise to the woman and her daughter after it was found there was inadequate record keeping.
The girl’s mother told the commissioner she would have liked to have received the information earlier to enable them to process it and engage the correct tikanga processes and protocols, rather than doing it postoperatively.
She expressed distress as the bone was to be inserted into her daughter’s body and eventually would be absorbed by it.
According to the decision there was nothing in the clinical records to indicate a potential bone graft was discussed with the pair during the initial consent process.
There was also no information provided to indicate senior members of the orthopaedics team or other staff discussed surgical options with the pair on the following day.
There were conflicting versions regarding what information was provided on the day surgery commenced.
A doctor recalled speaking to the pair about the likelihood of bone transplantation in the surgery.
The doctor recalled explaining the bone came from the bodies of deceased people from overseas.
However, the mother said she was advised about the use of another person’s bone at the point that her daughter was prepped and ready to be taken for surgery, and that she was not told the bone was from a person of unknown origin.
Until that point, she understood her daughter would have surgery that involved the insertion of a metal rod.
She told the commissioner she was handed the anaesthetic consent form and, while she was trying to read and sign it, the doctor was talking to her and mentioned a bone graft.
She said she asked questions about the bone but was told that it would be discussed later.
The doctor disputed her account, telling the commissioner he had previously postponed or cancelled surgeries where he was not satisfied that the person wished to proceed.
The mother told the commissioner that, at the time, she felt alone, vulnerable, worried and felt pressured to consent.
She felt conflicted between her daughter’s need for surgery, fear of it being cancelled, and her strong belief in not having bone placed inside her daughter without information on where it came from, or without the opportunity to digest the information and perform appropriate karakia.
There was no information on the consent form or other clinical records to indicate an explanation of the procedure.
The doctor offered an apology and noted the information “should have been delivered earlier” to allow the pair to consider the operation.
The hospital also offered an apology and acknowledged there was “certainly an opportunity to discuss the procedure with the whānau earlier”.
It acknowledged that ideally the pair would have been provided with information about the bone graft before being in the preoperative area.
However, the hospital stated that it felt the pair were given “adequate opportunity to consider the information, ask questions, and either withdraw consent or request a delay to the operation”.
Having reviewed all the information, Dr Caldwell found no evidence of bone transplantation communicated to the pair before the girl was placed in the preoperative area.
Caldwell accepted the doctor was placed in a pressurised situation to provide information critical to the informed consent process, which should have been communicated by orthopaedic teams earlier.
“For this reason, I consider the failure to communicate key information effectively prior to surgery is a systemic issue rather than an individual one.”
Caldwell said there were multiple opportunities for the hospital to effectively communicate critical information about the procedure.
The pair had a right to an environment that enabled open, honest, and effective communication with health providers, but the hospital hadn’t created it, according to the decision.
The commissioner noted that in ao Māori, allograft (tissue or organ transplanted from one human to another who is genetically non-identical) bone and its use is viewed as kōiwi (Māori skeletal remains or human bones) and that it holds cultural architectural significance for Māori, with the key part of kōiwi being “iwi” (as in strength, bone/s, and people, including DNA).
“DNA is a physical embodiment of whakapapa, mauri, tapu and wairua connections to tīpuna (ancestors), which remain strong and do not diminish with time or quantum.
“Therefore, kōiwi is regarded as tapu, as the essence of the kōiwi becomes woven into the whakapapa of the person receiving it.”
Dr Caldwell said she was aware the hospital was in the process of developing a national informed consent policy, and she intended to engage in the process to strengthen the obtaining of appropriate informed consent for the use of allograft bone and the information that should be provided to consumers.
Al Williams is an Open Justice reporter for the New Zealand Herald, based in Christchurch. He has worked in daily and community titles in New Zealand and overseas for the last 16 years. Most recently he was editor of the Hauraki-Coromandel Post, based in Whangamatā. He was previously deputy editor of the Cook Islands News.