Wednesday, December 1, 2021

Comments by DianeOleary

Showing 3 of 3 comments.

  • I appreciate the clarification. I’m an ethicist who runs a nonprofit to advocate for patients mistakenly denied medical care because of reckless diagnosis of somatoform disorder (or something like it). This problem is an epidemic of staggering proportions, and it’s what created the Pelletier case.

    How about instead of setting up courts to make these decisions, doctors just respect the rights of patients (and parents) in cases of somatoform diagnosis, so patients (and parents) just continue to make their own autonomous decisions? If everyone respects patients’ rights from the start these kinds of cases cannot occur.

  • John, I appreciate your concern for children who suffer from these kinds of tendencies in parents, but there’s immense danger in your approach. It rests on a faith in medical diagnostic practice that’s just impossible to support.

    Equating lack of medical diagnosis with presence of mental health diagnosis is common but it’s indefensible – I mean, there exists no evidence of any kind to support the view that unexplained physical symptoms generally have mental health causes.

    There are, for example, as many patients with rare diseases as patients caught up in the “epidemic” of diabetes – that’s 1 in 10 Americans. Because there are 7000 rare diseases, no doctor can be familiar with even a significant portion of them. That means doctors see 2-3 patients every single day with diseases they’re just not likely to recognize without pursuing the unknown. These numbers tell us it’s straightforwardly unethical to suppose that what a doctor has been unable to explain must be a mental health problem.

    Here’s a figure that helps put the proportions of these problems in focus. Justina Pelletier’s diagnosis of mitochondrial disorder was overturned when her parents were charged with medical child abuse. How common are these two disorders? According to studies, mitochondrial disorder is 40 times more common than medical child abuse (1/5000 vs 1/200,000). Presuming rare disease in children is less likely than psych problems in parents is a statistical error of colossal proportions. In the case of mito it’s mistaken 40 times over.

  • A terrific article. You are certainly right that no diagnosis of somatic symptom disorder can support the very severe actions of BCH, DCF or the Court in the case of Justina Pelletier. Criteria for somatic symptom disorder are appallingly vague and subjective. Further, there is so much dissent within the psychiatry community about the validity of SSD that it’s hard to imagine any court using it as the basis for actions of any kind.

    I think it’s likely somatic symptom disorder has actually not been grounds for any of the Court’s actions in this case until very recently. “Somatoform disorder” is the term that’s been used exclusively in the media, by the parents, and in the records released by the media up until this ruling. In reality it’s hard to see how this case could have developed if somatoform disorder had not been the core of the matter from the start.

    A patient with somatoform disorder (still in use through current ICD editions) has physical symptoms that have psychiatric causes rather than medical ones, so in using that label BCH would have said very clearly “there’s a difference of opinion between our staff and staff at Tufts on the medical reality of Justina Pelletier’s symptoms – and the parents are guilty of medical child abuse for not recognizing that we’re right and Tufts is wrong” (sic!).

    On the other hand, a patient with somatic symptom disorder has physical symptoms they worry too much about – so using that label would say nothing at all about a difference of opinion between BCH and Tufts on the medical reality of the girl’s symptoms. Moreover, it would say nothing at all to cast suspicion on the parents’ approach to their daughter’s condition.

    If BCH had taken this case to DCF as somatic symptom disorder a custody challenge could not have ensued, and if DCF had taken it to the Court with that label the whole thing would have ended there. In order for any of these actions to have been possible BCH, DCF and the Court had to be very clear in the shared view that Justina Pelletier’s symptoms were caused by psychiatric problems rather than medical ones – and a diagnosis of somatic symptom disorder just could not have given anyone that clarity.

    There’s something very shifty going on here when it comes to terminology – something that makes it possible for the new ruling to justify the Court’s decision to take the girl into custody, while at the same time justifying its reversal on the medical matter, putting her back in the hands of her medical team at Tufts. There’s a whole lot going on in that bit of slight of hand!