Doctor's Orders

Parents battle medical authorities for control of their children.

Brian Doherty from the February 2001 issue

(Page 2 of 3)

Similarly, researchers at a Brazilian university published a study in the June issue of the Journal of Acquired Immune Deficiency Syndrome that concluded that HIV-positive infants exposed to AZT were five to six times as likely to develop full-blown AIDS as HIV-positive infants who were not exposed to AZT.

George Kent is chairman of the political science department at the University of Hawaii at Honolulu and works with United Nations task forces on nutrition and human rights. As an expert on the benefits of breast-feeding, he was called in to testify on the human rights implications of the Tyson case. Because he wasn't a medical doctor, he wasn't permitted to take the stand. In the testimony he wasn't allowed to give, Kent outlined a perspective that seems to strike a reasonable middle ground between parental autonomy and the state's interest in the lives of young citizens. "The state may not intervene simply because the parents are not following what the state deems to be optimum child rearing practices," he contends. "Similarly, the state may not intervene when there is no clear consensus regarding the effectiveness and risks of the proposed treatment....Governments may justifiably block individuals from making decisions in which their decision is certain to lead to an extremely bad outcome, such as death or severe injury." Kent notes that a study published last March in The Journal of the American Medical Association found similar mortality rates in breast- and formula-fed children of HIV-positive mothers.

Kathleen Tyson wanted to avoid feeding her child AZT, a powerful cell killer originally designed in 1964 for cancer chemotherapy but abandoned because it killed too many healthy cells as well. Yet she was forced to do so by state authorities.

At least one court has granted a parent the right to refuse anti-HIV drugs for her children. Valerie Emerson, who herself is HIV-positive, watched her daughter, who was taking anti-HIV drugs, die at age 4. As a result of the experience, she refused to give similar treatments to her then-4-year-old son, Nikolas. So the state of Maine tried to take custody of the boy and prescribe their preferred anti-AIDS drug regime.

A state district court in Maine, however, ruled against
the state, noting that doctors had given Emerson "all the information currently available from the limited experience the medical community has had in this treatment for children" and that they "could not give her any definitive information concerning long term effects....In effect, treatment is being provided to sufferers of this illness at the same time as statistics and efficacy studies are being conducted." Since the various treatment regimens were "changing constantly," the district court decided that Emerson should not lose custody of her son because she didn't want him to participate in what was essentially an experimental treatment plan. Maine's Supreme Court eventually upheld the judgement of the district court.

It's hardly surprising that HIV treatment is one of the hot areas of contention between parents and medical authorities. Not only does AIDS pose many serious and legitimate public health concerns, but it's far from clear what the best ways of treating it are. But legal conflicts between child services agents who are convinced they know best and parents who insist on their rights to raise their children as they see fit run the gamut. Representatives of local and state governments have enforced unwanted treatment plans or taken children away from parents in cases involving conditions ranging from hyperactivity to obesity to hepatitis B to ulcerative colitis.

In August, Albuquerque's Children, Youth, and Families Department took a 3-year-old away from her parents because the state decided she was too fat. In October a state district court judge announced an agreement to eventually return the child but cloaked the details under a gag order. (New Mexico news organizations, in concert with the Associated Press, challenged the gag order, but the New Mexico Supreme Court upheld it.) In October in Utica, New York, the parents of 77 middle school kids were threatened with neglect charges by local child protection agencies if they didn't get their kids vaccinated for hepatitis B, a disease almost always spread through intravenous drug use or sex with multiple partners. Vaccines themselves pose possible, if rare, health risks that some parents wanted to avoid.

In July a family court judge in Albany County, New York, ordered Michael and Jill Carroll to continue feeding Ritalin, a popular drug used to treat hyperactivity and other juvenile behavior problems, to their son Kyle. The Carrolls had taken Kyle off the drug because they were unhappy with its effects. They ended up in court after a school counselor reported them to the local child protective services agency for neglect.

"Ritalin solved the problem for the school," says Jill Carroll, "but the side effects were too much. Kyle hardly slept or ate. After a while he started complaining of-this was kind of weird -these pains. There was something wrong with his legs, he'd say: He had 'wigglies' in his leg. Every time he drank water, he said, it felt like it was 'trickling' from his brain." Kyle's insomnia and loss of appetite are not uncommon among kids on Ritalin. Other reported side effects include heart palpitations, nausea, anxiety, and psychoses. And the side effects can often lead to a roller coaster of psychoactive medications as new
drugs are prescribed to cope with them.

Government agents seem quick to drug kids. The Los Angeles Times ran a story in 1998 looking at kids in foster care and other forms of government supervision in California. Reporter Tracy Weber found that "children under state protection in California group and foster homes are being drugged with potent, dangerous psychiatric medications, at times just to keep them obedient and docile for their overburdened caretakers."

Ritalin, like AZT, is embroiled in scientific and cultural controversy, with a dominant medical model being combated by an increasingly vocal minority of doctors who point out Ritalin's chemical and functional similarity to cocaine and amphetamine (normally considered bad for kids). Skeptics also note that the disease for which it is allegedly a cure, "attention deficit hyperactivity disorder," is better recognized as a set of behaviors that teachers find irritating, with no objectively verifiable chemical or organic cause.

Physicians and psychologists who publicly oppose dosing kids with Ritalin, such as Peter Breggin, Fred Baughman, and Richard De Grandpre, all report hearing from many distraught parents who, like the Carrolls, are upset about what the drug does to their children. Such parents commonly report implied pressure from schools to drug their child lest the kid be booted from school. Thus, schools can leverage coercive power without openly bringing in child protective services or the courts.

Facing a court order to continue drugging their son, the Carrolls found another pediatrician, who decided Kyle didn't need Ritalin after all. Since it was a doctor's decision and not theirs, this satisfied the court order (and shed some light on the scientific value of Ritalin diagnoses). Kyle is now off Ritalin, and is in a special education school instead of the traditional public one that called in the cops. He's doing fine, says his mother. Still, the state insists it must drop in from time to time. "The only thing they do is still come out and make sure everything is all right," she tells me. "Every other week, they come in and say, 'Hi, Kyle.' Kyle says 'hi,' and they walk away."

As the Carroll's experience shows, the state doesn't like to step out once it has a foot in your life. This is a lesson also learned by Tina Phifer, a New York City accountant and single mother who homeschooled her daughter, Amkia. In 1997, Phifer brought Amkia, then 9, to Montefiore Medical Center for her ongoing problems with ulcerative colitis, an inflammatory disease of the colon usually characterized by bloody diarrhea and abdominal pain. Phifer is interested in non-Western medicine and kept an especially close eye on the drug treatments Amkia received. Phifer was alarmed when she heard doctors discussing taking out Amkia's colon because her bleeding stool problems were not going away despite all the drugs.

"Not only weren't they paying attention to me, the treatment itself was incompetent in terms of things like blood drawings," says Phifer. "They had student interns who couldn't find veins and would stick her four times and damage her arms. I told them that she'd had allergic reactions to the antibiotic amoxicillin in the past, and they still gave it to her." One of the drugs Phifer questioned was Rowasa. The Food and Drug Administration declared that the drug's promotional materials illegally and mistakenly implied "that Rowasa is effective in all types of ulcerative colitis...when such has not been demonstrated by substantial evidence." A batch of the drug was later recalled by its maker for production flaws. Which doesn't mean that Tina Phifer knew more about medicine or science than the doctors at Montefiore. But it does indicate that just being a medical doctor doesn't bestow flawless discernment such that the law should force your decisions on parents.