Sunday, July 12, 2015

A big surge in medical child abuse

I have posted about Justina Pelletier, a kid who was seized by Massachusetts after conflicting medical diagnoses. Now there are many other such cases:
The term “medical child abuse” dates from the mid-1990s, as a condition related to Munchausen syndrome by proxy, a mental disturbance in which a parent induces illness in a child to get attention. It has caught on with doctors over the last decade. But what constitutes “unnecessary medical care” — the heart of the test for medical child abuse — is vague and subjective. After all, doctors often disagree with one another when it comes to the diagnosis and treatment of complicated conditions. ...

As I’ve researched medical child abuse over the past year, several advocacy and support groups for patients with rare diseases told me they had seen an alarming rise in medical child abuse charges: MitoAction (which supports patients with mito); the American Partnership for Eosinophilic Disorders (disorders relating to white blood cells); the Ehlers-Danlos National Foundation (a rare disorder of the connective tissues); and Dysautonomia International (autonomic nervous system disorders). Through these groups, I’ve surveyed 95 parents who have been accused, in 30 states.

Dr. Frances D. Kendall, the geneticist in Atlanta who diagnosed my daughter’s mitochondrial disease, told me that she has seen a rising number of cases in which the parents of children with mito had been wrongly charged. Dr. Mark S. Korson, the geneticist who treated Justina Pelletier at Tufts, also said that such charges have snowballed in recent years.

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.
Child neglect used to mean not getting the basic necessities of food and clothing. Now it means CPS gets to second-guess expert medical opinion.
As I’ve researched medical child abuse over the past year, several advocacy and support groups for patients with rare diseases told me they had seen an alarming rise in medical child abuse charges: MitoAction (which supports patients with mito); the American Partnership for Eosinophilic Disorders (disorders relating to white blood cells); the Ehlers-Danlos National Foundation (a rare disorder of the connective tissues); and Dysautonomia International (autonomic nervous system disorders). Through these groups, I’ve surveyed 95 parents who have been accused, in 30 states.

Dr. Frances D. Kendall, the geneticist in Atlanta who diagnosed my daughter’s mitochondrial disease, told me that she has seen a rising number of cases in which the parents of children with mito had been wrongly charged. Dr. Mark S. Korson, the geneticist who treated Justina Pelletier at Tufts, also said that such charges have snowballed in recent years.

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.
This is a big attack on parental rights. Parents should always have the right to get a second medical opinion, and to choose which medical advice to follow.
OUR legal system protects parents’ rights to make decisions for their kids, even if those decisions are sometimes less than ideal.

Courts have long dealt with cases of neglect, in which parents are charged with denying kids necessary care. In these cases, courts have allowed the state to require care only when doctors agree about the treatment, its medical benefits are clear, and its risks are small. This exception is narrow because courts recognize that parents are usually far better positioned — and motivated — than doctors or the state to know and do what is in their child’s best interests. These protections should apply to medical-abuse charges.

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.

No comments: