Journal and authors apologize “unreservedly” for distress caused to deceased child’s family by case report
Neuroskeptic featured an interesting situation over the weekend, involving a case report published in an anesthesiology journal.
The case report in Anaesthesia and Intensive Care — about a six-year-old boy with a rare neurological condition who died following administration of anesthesia — caused the boy’s parents great distress when it appeared in November.
This letter is submitted for publication with the consent of the patient’s parents and of the Queensland State Coroner, Queensland, Australia.
Apparently, that consent wasn’t as broad as the authors thought it was. Here’s the apology from the journal (emphasis ours):
Anaesthesia and Intensive Care would like to apologise unreservedly for the recent publication of a letter describing fatal rhabdomyolysis following volatile anaesthetic induction in a six-year-old boy with Duchenne muscular dystrophy. This apology is to the parents and other family members of the patient. We now recognise that the contents of the letter and the circumstances in which it has been published have caused considerable distress. This is primarily because the contents gave an incorrect impression of several aspects of the patient’s presentation. The parents report that the child was no more unco-operative than any other six-year-old faced with an unexpected surgical procedure, that he was fully mobile and owned but did not as yet use a wheelchair and that while he had some Cushingoid features, he was not obese as could be misconstrued from the description “overtly Cushingoid”. Moreover, they report that he had not had previous anaesthetics between the ages of one and four years for tonsillectomy or grommets. They do not recall any attempt at intravenous cannulation prior to the procedure. They report that he was emotional prior to the induction of anaesthesia, but this was understandable given the way he was managed. They have indicated that they did not give consent to the publication of the letter specifically, only to the communication of information to other doctors, and certainly not in the form that was published. We accept that the distress we have caused is irreparable, but hope that this apology will reduce any ongoing distress.
The parents’ distress and concerns have been communicated to the authors of the letter, who will be responding independently and through their hospital administration.
Nedlands, Western Australia
The authors also apologized:
We offer an unreserved apology, particularly to the patient’s family, for any distress that has been created over the publication. The intention of our letter was always to inform the anaesthetic community in order that others may avoid a similar occurrence in the future. We understood his death to be a major event in a relatively small community and, thus, it was likely his identity may be guessed by some readers. This was taken into account when considering publication. We, therefore, took great care to try to protect the patient’s identity and to try to report the facts in an objective and non-judgemental manner. Any wording in the letter that caused offence or distress to family members by appearing judgemental is deeply regretted.
I wonder if anyone knows of a similar case in the medical literature?
Although we’ve seen a lot of retraction notices that include apologies, the only thing that comes close to an apology for an unretracted paper is what happened when scientists published the HeLa genome. Then, the researchers took the genome offline. As we wrote about that case:
That genome, of course, could be very useful in research, given how widely used HeLa cells are. But the problem was that it also reveals a great deal about the genetics of Lacks’s family, despite an author’s claim in a press release that “We cannot infer anything about Henrietta Lacks’s genome, or of her descendants, from the data generated in this study.” And the family hadn’t given consent for the genome to be published.
That episode led to an agreement between Lacks’ family and the NIH about the use of the cell line’s genomic information.