Browsing the news this AM I ran across this story about Justina Pelletier, a girl with a “medical mystery” being taken into state custody by Boston Children’s Hospital and forced on to a locked psych unit rather than given the medical attention she was referred for.  As someone with a complex medical history and more than one “controversial” diagnosis, I am shaken.

The themes are so familiar to me:  how providers handle disagreements over “controversial” diagnoses; the chicken and the egg etiological conundrum posed by the apparent stress and emotional strain that is seen in people (and families of people) with these physical symptoms – i.e. “is the emotion causing the physical symptoms or the physical symptoms causing the emotion?”; the dehumanizing effects of encounters with medical professionals who seem to operate with a personal deficiency of empathy and/or who have no professional training or model for how to muster and apply it in a medical conflict scenario.

Despite having some appreciation for how the medical staff might have come to wonder if their patient had been “over treated” and mis- or over- diagnosed, could not help but think that they moved from suspicion to conclusion with what in medical timelines is lightning speed.  Need to see a specialist because your systemic symptoms might be caused by a form of cancer or a rare autoimmune disease?  That’ll be 6 months.  Need to invalidate a patient’s symptoms and void another doctor’s diagnosis because it doesn’t fit what you know?  Takes days at most.  What facilitates that transition, and in fact I think what engenders it in the form of feeding negative judgement, is the bad blood that arises when there is a clash between the way that medicine is taught and the way that complex medical ailments work.  It is taught as a science, and in our western tradition this means adherence to the tenets of simple linear cause and effect models only, an emphasis on what can be boiled down into a textbook, a system-wide lack of admission of the limits of knowledge, and a deeply held and unexamined belief that all medical encounters must be dichotomously defined as active agent provider and passive object patient.  When aspects of real world practice shake those tenets,  all hell breaks loose.  It is a nightmare.

Excerpted from “A medical collision with a child in the middle:  Justina has a metabolic disease. Or does she? Her parents and Children’s Hospital deadlocked, she was placed in state custody.” By Neil Swidey and Patricia Wen, Globe Staff, December 15, 2013

….These cases are rare, but not as rare as one might think. In just the last 18 months, Children’s — which given its reputation attracts many of the toughest cases from across the Northeast — has been involved in at least five cases where a disputed medical diagnosis led to parents either losing custody or being threatened with that extreme measure. Similar custody fights have occurred on occasion at other pediatric hospitals around the country.

It happens often enough that the pediatrician who until recently ran the child protection teams at both Children’s and Massachusetts General Hospital said she and others in her field have a name for this aggressive legal-medical maneuver. They call it a “parent-ectomy.”

Typically in these cases, the child had been diagnosed elsewhere with one of several relatively new disorders that are complex, poorly understood, and controversial.

The child’s medical record usually contained references to the parents being highly stressed and difficult to handle. And when the parents in most of these cases rejected the suggestion by doctors that the child’s problems were more psychiatric than physical, that sparked the medical team’s concern, paving the way for the call to the state child-protection agency.

Read the full story, part one of two.

And here’s the irony.  As a child, I was seen at hospitals and even by providers mentioned in this article for GI complaints and fainting.  As a child, I was living in a very abusive home.  Did the hospital staff or my doctor pick up on any of that at all?  Nope.  I was told by my GI doctor to “try to reduce stress” in my life…as a child.  At no point did DCF/DSS get a call to look into whether the stress in my life was perhaps due to something very wrong and very out of my control.  Apparently, since my mother didn’t push the doctors too hard to come up with a unifying diagnosis for my problems or pester them when their treatments failed to control my symptoms, she didn’t trigger any alarm bells.  To me, this is the perfect accompanying piece of evidence that what can trigger conclusions of child endangerment/abuse is not genuine, informed concern as much as a desire to punish pushy people who disagree with doctors.

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  1. I tried to read the whole article and couldn’t due to the damn ghosting, but got the gist. I think your personal example is so powerful in proving what the real issue is here.

    I also thought this was genius: “It is taught as a science, and in our western tradition this means adherence to the tenets of simple linear cause and effect models only, an emphasis on what can be boiled down into a textbook, a system-wide lack of admission of the limits of knowledge, and a deeply held and unexamined belief that all medical encounters must be dichotomously defined as active agent provider and passive object patient.”

    I think when you take the whole, screwed-up system and apply it to juveniles, it becomes magnified and all the flaws become so visible. It’s extremely scary for people like us to know how little control we really have.

    Great post.

    • It really is so scary. I increasingly fear how my life will be when I am a senior. The idea of being more helpless in the hands of the modern medical industry scares the hell out of me. This story shows that the fear is quite well founded.

      • It’s scary enough now. If you recall, I’m desperately trying to find a new GP or internist (prefer the latter but they all suck here too). Granted this is a different story, but I finally found someone with good reviews 45 mins from me. So, I called today and there’s a 2 mo wait and the receptionist was really rude. I said that I wanted to leave word with the med. asst. to see if the doc had heard of EDS (highly unlikely) and she said I’d have to wait to see the doc. I’ll be in my deductible so paying cash! I told her I always ask 1st so she transferred me to the rude MA who had to ask about my question (also mentioned that I needed to see a specialist, not a GP–yeah, have like 12 of them) and then said it was a HIPPA violation to ask the doc and tell me that. Wtf? What if I had diabetes and wanted to make sure my GP knew about that? I asked to be transferred back to the receptionist so I could just make the damn appt for now and got put on hold for 5 mins and then sent to VM, so I hung up and threw away her info. So, no doc for me. It’s like there isn’t even a system now–they also couldn’t tell me if they took my insurance for some reason. I was so pissed and I have no idea what to do and have maintenance meds from the GP that I have now, but not sure if she’s even seeing me since she just dismissed me last time and walked out of the room when I had seen her for help about my weight loss and got nowhere.

        I guess I see 2 systems in place here: the crazy, over-reactive one in your post and the not-interested-in-doing-anything-for-you scenario I chronically get. My rant du jour…

        Oh, I told my counselor that if I could just get all my meds from Mexico w/o issues via the net, I’d do that and never see a doc again. Why bother? I just need my PT as that’s all that helps to a point. I could probably have housing with all the money I’d be saving too!

      • That’s terrible! I keep finding this – it’s hard to find a good doctor AND good office staff. it’s like they’re mutually exclusive or something.

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