Journal and authors apologize “unreservedly” for distress caused to deceased child’s family by case report

aaicNeuroskeptic 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.

Here’s the original case report, which requires free registration to read. It ends with this:
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.
N Gibbs
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.

Neuroskeptic asks:

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.

8 thoughts on “Journal and authors apologize “unreservedly” for distress caused to deceased child’s family by case report”

  1. The authors’ apology is not an apology. “We apologize for any distress that has been created…” Classic wording of a non-apology apology, made by people who believe they actually did nothing wrong. At least the journal’s apology seems to own up the mistake. A qualified apology–of the “We’re sorry IF this caused distress…” variety seen elsewhere–is no apology at all.

  2. I completely agree with Freehlr. AND the non-apology came from the doctors on whose operating table the child died. So they wrote up a report on a child with muscular dystrophy in whom inhalation (?) anaesthetics triggered rhabdomyolysis, which is an often fatal sudden, massive break down of muscle tissue. Some drug currently advertised on US tv has “sudden onset muscle pain” or words to that effect in its list of side effects. That’s referring to rhabdomyolysis. Writing a note, especially in something quicker to publish and more widely read would be great, and responsible. But it doesn’t need all this palaver about how mobility impaired the kid is or that he was freaking out. As for “overtly Cushingoid”, Cushings is a disease where the body produces too much of the hormone cortisol. It’s not diagnosed by eyeballing people. It sounds like their case report, and presumably patient notes, are full of weird irrelevant stuff. Sounds like the journal should not have published the paper as submitted with the irrelevant ‘colour commentary’.

  3. I don’t think I agree with Freehlr and Conn.

    It is reasonable to apologize for distress caused. But from the letters the journal and authors don’t necessarily agree that the report either misrepresented the facts or was published without adequate consent.

    It’s difficult to believe that the parents would have expected to approve the specific text, and it is not reasonable to expect MDs to seek patient or family approval for diagnoses or interpretation of signs and symptoms.

    Case reports are an important part of medicine since controlled studies take years to conduct and will never be done for rare or unusual events. They are always anonymized for privacy and would no doubt be distressing for any family to read.

    1. Sorry Dan, neither the story nor the case were about diagnosis. Nobody expected any doctor “to seek patient or family approval for diagnoses or interpretation of symptoms and signs”. This was about irrelevant derogatory comment in the case report. You are right that case reports CAN be important in diseases. This wasn’t a disease, it was a weird, unanticipatable, accident. Like an unknown penicillin allergy. What should result from this death and from communication about it is hospitals setting up a protocol where when they operate on someone with MD they have all the stuff to treat rhabdomyolysis standing by. As is done now for malignant hyperthermia, another anesthesia induced medical emergency.

      As the story says the hiding of the child’s identity in the journal article didn’t work because he lived in a small town. Medicine is about people. Sometimes about their unbearable pain. The doctors in this story don’t get that.

      1. “This was about irrelevant derogatory comment in the case report.”

        I don’t see anything in this post that shows the original report contained anything either irrelevant or derogatory.

    2. But they didn’t actually acknowledge that they caused distress. And therein lies the non-apology apology. They said, “Any wording…that caused…distress…is deeply regretted.” This is very different from saying, “We messed up, we caused distress, we realize that, and you know what? We’re sorry. We apologize. Our bad.” The kind of “apology” that these authors tendered is the kind I expect from politicians, not actual human beings who are genuinely sorry for their actions (no offense to politicians, of course–well okay, maybe a little). My issue is not so much with case reports and consent and whatnot, it’s that if you’re going to apologize, then actually apologize. These meek half-apologies indicate that the apologists have no idea what they’ve done wrong and therefore don’t know what they’re apologizing for–in which case, why are they apologizing?

      1. Gotta side with Dan here. There is a lot going on:
        There are parents who lost a child and are understandably upset. They consented to communication about the case (which doctors do by publishing) without fully understanding what that meant. Now the journal/authors believes that they had obtained permission properly, but don’t want to upset the parents so they apologize, without admitting that they were wrong.

        I would argue that the details and descriptions mentioned were likely included because they were deemed relevant and accurate in their expert opinions, especially the cushingoid features.

        It is perfectly acceptable to say that you are sorry that your actions hurt someone, that you did not intend to hurt them, however, you stand by your actions. In fact these apologies happen all the time in medicine… I’m sorry that I watched your mother die, but she had a DNR order. I’m sorry that I subjected your husband to futile medical heroics that he would not have wanted, but there was no next of kin to convey this. I’m sorry that I can’t prescribe you that, but in my opinion the societal harm far outweighs the possible benefit to you.

  4. I think the doctors could have gone to far greater lengths to anonymize (with the journal editors’ knowledge):

    They could have changed their own names (though this might have meant not being able to cite the paper which would not have existed if not for their misjudgment).
    They could have changed “dog bite” to “animal bite”, or even “laceration inflicted by an animal”.
    They could have anonymized anything else such as hospital or country that may have been in the article.

    And then they could have placed a disclaimer saying that names, etc… had been changed to protect the family.

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