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.
Final Trick 