Kill diabetics with insulin instead of seeing that Bcg is widely available in the us
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CHAPEL HILL, N.C. — FEW things are tougher for a parent than dealing with a child’s serious medical condition, particularly if it is complicated and hard to diagnose. The parent has to make hard choices about treatment, navigating conflicting advice from doctors or even rejecting one doctor’s opinion and seeking another.
Recently, the situation of these parents has gotten even harder. Some doctors and hospitals have begun to level a radical new charge — “medical child abuse” — against parents who, they say, get unnecessary or excessive treatment for their kids. That this care is usually ordered by other doctors hasn’t protected parents from these loaded accusations.
Although most of these cases have nothing to do with real child abuse, credulous child welfare officials have too often supported the doctors, threatened parents with loss of custody, and even removed kids from their homes — simply because the parents disagreed with the doctor’s plan of care.
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.
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.
I WRITE from experience. My husband and I are lucky not to have been charged with medical child abuse during the eight years we tried to find answers to our daughter’s mysterious illness.
Her symptoms began when she was 10 and had her firstmigraine. The headaches became so frequent, nauseating and painful that she missed most school for two years. Eventually, at 13, she received a diagnosis of postural orthostatictachycardia syndrome, an autonomic nervous system disorder.
We learned how to deal with this condition, but when our daughter was 15, her health deteriorated once again. She started to fall — first once a day, then five times, then 20 times a day. The dizziness, fatigue and nausea worsened. When her neurologist refused to believe that the falls were caused by anything besides faintness from the nervous system disorder — though we could see that she was fully conscious and that her legs weren’t working properly during the falls — we sought out other experts. None could explain the falls. Meanwhile, our daughter spent two years using a wheelchair to go all but the shortest of distances.
Many doctors suggested that she was exaggerating or even faking her symptoms. A few thought her symptoms resulted from psychological factors like stress. Others surmised that the problem was me: Perhaps because I had migraines when I was younger, I was overly sensitive to her pain. Or perhaps my refusal to accept the doctors’ conclusions was preventing my daughter from dealing with her psychological issues.
When she was 18, our daughter learned that some patients with her nervous-system disorder had been diagnosed with mitochondrial disease, which would also explain her intermittent leg weakness. We consulted a mito expert, and almost wept with relief when she believed our account of our daughter’s symptoms. Tests confirmed that our daughter had mito. With luck and a team of exceptional doctors, she managed to get her life back. She recently finished her third year of college. Her wheelchair gathers dust in our basement.
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.
The precursor to medical child abuse, Munchausen syndrome by proxy, dates from 1977, when a British pediatrician published case studies of two mothers who had intentionally sickened their children — in one case, fatally — to get attention. However, controversy developed about whether this was a genuine psychological disorder, what motivated the mother (it is almost always mothers who are charged) and, critically, how to distinguish Munchausen mothers from those caring for genuinely sick kids. Munchausen charges were generally discredited after several mothers were shown to have been wrongly convicted based on grossly deficient expert testimony.
Sadly, while knowledge of Munchausen traveled across the Atlantic, skepticism about it did not. Starting in the mid-1990s, two doctors — Dr. Carole Jenny, a pediatrician specializing in child abuse, and her husband, Dr. Thomas A. Roesler, a psychiatrist — proposed that Munchausen’s taint could be avoided by reconceptualizing the condition. Doctors, they said, shouldn’t focus on the parent’s mental state (as in Munchausen) but, instead, simply determine whether the child had received unnecessary and harmful, or potentially harmful, care at the behest of a parent. They defined “potentially harmful” to include any unnecessary medicine or diagnostic test that could have harmful side effects, even if the child wasn’t actually harmed. Such care, they argued, should be labeled medical child abuse, and treated like any other kind of child abuse.
But there is no solid evidence that their standard helps to sort out parents who intentionally use medical care to hurt their children from well-meaning, innocent parents. Indeed, Drs. Jenny and Roesler recognized that most kids identified by their criteria were truly sick (though they believe the kids received excessive, inappropriate care) and that their criteria identified far more parents than the standard Munchausen criteria.
Dr. Richard G. Boles, a mitochondrial disease specialist who has worked on some 100 cases involving suspected medical child abuse, said that only about five fit the classic Munchausen situation and should be considered abuse. Of the rest, he says, about two-thirds involved a demanding mother who got on a doctor’s nerves; the remainder involved a parent who was too anxious in dealing with doctors who couldn’t give adequate answers.
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.
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.
In its zealotry, the medical child abuse movement resembles two other panics from the recent past: the sex-abuse panic of the 1980s and 1990s and, more recently, the panic over shaken-baby syndrome. In both panics, experts saw foul play where none existed, government officials took their views at face value, and people were wrongly convicted and imprisoned, their lives ruined. Medical child abuse is causing similar harm.
Jessica and Sean Hilliard of Attleboro, Mass., went through the agony of watching their 5-year-old daughter die in 2011 from what two outside specialists concluded was a genetic disease that affected mitochondrial function. The couple asked Boston Children’s, where the daughter died, to test their 3-year-old son for the disease after he showed symptoms suggestive of it (mito can run in families). A hospital pediatrician specializing in child protection, citing a pattern of behavior that she contended suggested abuse, accused the parents of fabricating their son’s medical issues, though she had not spoken with his outside doctors and therapists.
After the state declared the charges unfounded, the Hilliards transferred their son’s care to Tufts, where he received several diagnoses, including mitochondrial disease. Even so, the Boston Children’s pediatrician called a Tufts doctor who focuses on child abuse, who then reported the parents for “overmedicalization.” The state intervened, over the objections of doctors at Tufts who were treating the boy. To resolve the charges, the Hilliards allowed him to be weaned off his medications. This required a six-week hospitalization, during which his condition deteriorated, until the treatments were restored. Again, the charges were dropped.
(Asked about the Pelletier and Hilliard cases, a spokesman for Boston Children’s disputed the facts but said the hospital could not discuss specifics of these cases because of privacy restrictions; he noted that health providers are obliged by law to report suspected abuse. Tufts said it couldn’t discuss the Hilliard case.)
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.”)
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.
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