July 15, 2015 by Robert Franklin, Esq, Member, National Board of Directors, National Parents Organization
Although this article could be better, it at least brings to wider public attention the growing issue of “medical child abuse” (New York Times, 7/12/15). The concept of medical child abuse is yet another way in which the state seeks to second-guess legitimate decisions of parents. I’ve written several pieces about that in the past including the Maryanne Godboldo case in Detroit and the Nikolayev case in California. In both cases, child welfare authorities simply substituted their own opinions about the proper medical care of a child for those of the parents. Having found perfectly sound parenting decisions to be inappropriate, the state proceeded to take the children from the parents and place them in foster care.
The Godboldo case was particularly egregious. There, Ms. Godboldo, in consultation with her daughter’s pediatrician decided to stop certain psychotropic medication that seemed to be making her mental condition worse. Child Protective Services got wind of the change and rushed to court for an emergency order taking the child from Godboldo’s care. Amazingly, it did so without notice to the girl’s mother, without evidence, without a hearing and without a judge. Yes, a court clerk simply stamped the order that had been written by CPS, with the judge’s signature.
When CPS appeared at Godboldo’s door, order in hand, she refused to give up her daughter. The next thing she knew, the SWAT team was out in the street with an armored personnel carrier.
Once out of her mother’s hands, the girl was placed in a psychiatric facility that proceeded to treat her exactly as her mother had, i.e. without the medication. A few weeks later, she was discharged greatly improved. Needless to say, Godboldo is now suing numerous state officials for their outrageous treatment of her and her daughter.
That brings me to one obvious defect in the NYT article. The writer, Maxine Eichner seems to believe that medical child abuse consists solely of parents demanding too much medical treatment for children. She claims it grew out of Munchhausen’s Syndrome by Proxy, i.e. parents who sicken their children or claim they need medical care when the only problem is the parent who craves attention.
As far as it goes, Eichner has a point. There certainly are parents who manifest MSP, although they’re rare. And there are other parents who overmedicate or otherwise over-treat their children. For them, the doctor’s opinion is always defective, the child needs more tests, more specialists, etc. The parent has read extensively on aspects of medicine that may relate to the child’s condition and believes s/he knows more about it than do the doctors. For those parents, a negative test result is bad news or not to be believed.
Yes, those parents exist, but again, they’re the rare exception.
Strangely, Eichner takes as her starting point the well-publicized case of Justina Pelletier that has nothing to do with MSP. Still, if she wants to demonstrate just how outrageously the state is capable of behaving, she could have done worse than the Pelletier case.
Perhaps the most notorious such case is that of Justina Pelletier, a teenager who was being treated for mitochondrial disease, or “mito,” a rare metabolic disorder that interferes with energy production. On the advice of a metabolic geneticist at Tufts Medical Center who was treating her, she was admitted in 2013 to Boston Children’s Hospital, so that she could see her longtime gastroenterologist, who had recently moved there. Without consulting the girl’s doctor at Tufts, Boston Children’s concluded that the girl’s problem was not mito, but largely psychiatric, according to The Boston Globe.
When her parents disagreed and sought to transfer her back to Tufts, Boston Children’s called child protection, asserting that the parents were harmfully interfering in her care. Although the Tufts geneticist supported the mito diagnosis, a juvenile court judge deferred to Boston Children’s assessment, and Justina’s parents lost custody. After more than 16 months in state custody, much of it spent in a locked psychiatric ward, Justina was finally returned to her parents — still in a wheelchair, still sick.
That points out a classic flaw in the whole concept of medical child abuse — that judges, not doctors, end up making medical decisions that often have even medical experts flummoxed. Unsurprisingly, in the Pelletier case as in the Godboldo one, they got it wrong.
But that’s another problem with the NYT piece. Eichner never mentions the glaring flaw in the system that turns medical decisions over to judges who are untrained in medicine. To say the least, it’s a remarkable oversight.
That may be explained by the fact that Eichner’s concern about the issue of medical child abuse stems from her own experience with her daughter who had a hard-to-diagnose medical condition. Eichner was never charged with abuse, but is smart enough to realize that “there but for the grace of God go I.” Unfortunately, her experience plainly skews her understanding of the problem. She believes that medical child abuse charges stem mostly from over-treatment of children when in fact the opposite is probably true. As in the Godboldo and Nikolayev cases, the state stepped in not to stop treatment but to force it.
Like many other people, doctors are required by law to report suspected abuse or neglect of children. Doctors also get paid for testing and treating patients. It’ seems very likely that a parent who refuses certain testing or treatment of a child stands a greater chance of being reported to CPS than one who seeks too much care.
Despite her article’s flaws, Eichner gets a lot right and, in the process, provides valuable information.
Most states lump “medical child abuse” into general child abuse or neglect statistics, and can’t break out separate numbers. Michigan is an exception. Its figures show that, on average, 51 charges of medical abuse have been made against caretakers each year between 2010 and 2013. Extrapolating this to the national population would mean more than 1,600 charges each year.
If that figure is anywhere near accurate, it suggests that medical child abuse charges are very rare. After all, the Administration for Children and Families reports that there were about 3.2 million reports of child abuse or neglect made to CPS agencies last year. So one in 2,000 of those were medical child abuse claims.
It’s no surprise that state officials want us to believe that medical child abuse is far more widespread than it actually is. It seems any opportunity to increase state power at the expense of families is an opportunity not to be missed.
Compounding the problems with the overly broad definition of medical child abuse is the considerable misinformation spread by its proponents. In 2013, a governor’s task force in Michigan stated that “many cases of Medical Child Abuse go undetected because caregivers are skilled at deceiving the medical community.” No hard evidence, however, suggests that such parents are anything but rare. Medical child abuse is far more likely overcharged than undercharged.
Again, the system incentivizes doctors to over-report.
The task force identified these warning signs of medical child abuse: a “highly attentive parent” who is “unusually reluctant to leave his/her child’s side”; a parent who “demands second and third opinions”; a parent who “is not relieved or reassured when presented with negative test results and resists having the child discharged from the hospital”; and a parent who has “unusually detailed medical knowledge.” These warning signs accurately describe many, if not most, loving parents of medically fragile children.
Yes, it seems that, when it comes to state child welfare officials, a parent can never win. Do less than what’s described above and a parent runs the risk of being judged neglectful. Do more and he/she is “medically abusive.” The broader the definitions of “abuse” and “neglect,” the easier it is for the state to exercise power over family life and parents’ decisions about their children’s welfare. We of course have seen this before in the astonishingly inclusive “definition” of domestic violence that has been used for decades now to remove parents from their children’s lives.
This of course is invariably defended with the claim that we all want to err on the side of caution when dealing with children’s well-being. The problem is that “erring on the side of caution” is usually the term applied to doing the opposite. Eichner provides an example:
Sara and Paul Mayo of Arlington, Tex., checked their 16-year-old daughter into Cook Children’s Medical Center in Fort Worth last November. It was her third admission in two months for acute stomach pain with no clear cause. This time, she had difficulty walking after taking her prescribed medications. A hospitalist and a neurologist who had not treated their daughter previously diagnosed a psychological disorder, and said she required in-patient treatment. When the Mayos disagreed, asserting they wanted a second opinion from the Mayo Clinic (no relation) in Rochester, Minn., the Texas hospital called the authorities to report their suspicions of medical child abuse. The charges were dropped only after the Mayo Clinic found that the daughter had gastric ulcers, among other ailments.
(A spokeswoman for Cook Children’s said that she could not discuss the case because of confidentiality rules, but added that the hospital was “morally and ethically obligated to protect children” and would “always err on the side of caution for that child.”)
When Cook Children’s “erred on the side of caution,” it in fact misdiagnosed the medical issue and attempted to stop the parents from receiving correct information and effective treatment for their child. That’s not erring on the side of caution, it’s medical malpractice.
Eichner’s article could have been much better, but it highlights an as-yet small but growing problem for children’s welfare. Medical child abuse is just one more concept whose result I predict will be less the protection of children than the enhancement of state power over them. The inevitable result will be more foster care that’s been proven to be detrimental to children’s physical and mental well-being.
Eichner understands that well:
Government should not get involved when doctors disagree about a diagnosis or course of treatment, the doctors have full knowledge of the child’s medical record, and a parent chooses one doctor’s opinion over another’s. It should intervene only when there is evidence that a parent has intentionally provided significant misinformation to physicians, fabricated elements of the medical history or induced medical symptoms. Parents should always be allowed to seek second (and third) opinions.
We must protect children from the rare disturbed parent. But medical child abuse, as it has been understood, is far too big and blunt an instrument to accomplish this purpose. It has harmed too many genuinely sick kids, and made life hell for too many loving parents. It is time to end the medical abuse panic.
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