Don't Tell, Don't Ask

A teenager born with HIV was never told of her status until it was too late. How this happened, and why, is now a matter of national debate.

Jackson and UM staffers who worked on the difficult case with Mitchell contend he had become frustrated not only with the mother but with Jackson's policy. "Dr. Mitchell is fed up with this case, I'll tell you that much," says the UM outpatient social worker. "Mitchell was pulling out his hair," Mishael adds. "He would go to Jack Hartog and say, I want to disclose it,' and Hartog would say, No, it's illegal.'" (Hartog counsels Jackson on HIV issues and interprets the laws from which the hospital has derived a working policy. He wrote "Florida's Omnibus AIDS Act: A Brief Legal Guide for Health Care Professionals.") Mitchell declined to comment on the case.

Dominique was hospitalized a second time at Jackson in late January 2000; she had suffered from infections and a brain aneurysm. "She was in really bad condition," says the UM outpatient social worker. "She couldn't talk, had trouble eating. We didn't think she was going to survive." During Dominique's monthlong hospitalization, her mother admitted she had not been giving her children any medication. When asked to return the drugs that had been prescribed, she brought in a bagful of 32 unopened pill bottles. "[Mitchell] felt that if Dominique had been taking them regularly, the complication would not have advanced to the point in which it did," UM's outpatient social worker reveals. Though UM nurses attempted to get the family on a pill regimen by labeling medicines and outlining a timetable, "somehow the mother was not registering that accessing treatment, especially for her daughter, would have prevented certain complications," the social worker explains.

On February 15, 2000, the team of specialists held another roundtable and consulted with UM's Dr. Lambert, who recommended they report the case to DCF. Even Leslie Ann Schor, AIDS/HIV educator for staff at Jackson who along with Hartog has interpreted the state law for Jackson, advocated disclosure. "Maybe [the children] would have come up with their own decisions," Schor acknowledges. "[At Jackson] it's not an issue until it blows up into something like this. Silence is safety."

Jackson finally reported the case to DCF, and shortly thereafter, in late February, it was heard by Judge Jeri Cohen in juvenile court. In February, while Dominique remained hospitalized, four team members told her and her brother they had HIV. According to the UM outpatient social worker, Dominique confided in another social worker that she wanted to have a boyfriend and perhaps someday a family. "Does having HIV mean I can't have a family?" Dominique asked. During a second court hearing in April, Cohen ruled that brother and sister would no longer remain under their mother's care. Antoine, their older brother, became the teenagers' guardian just as it was revealed to him in court that his mother and siblings were HIV-positive. "We had to do a lot of education and preparation before placing the children with he and his wife," recalls the unnamed social worker. Dominique lived in foster care for about two weeks before moving in with her older brother, his wife, their child, and Jonathan.

Dominique's stay at Antoine's home lasted seven months. During that time he reported disruptive behavior coming from his sister. "She would break things, throw things," the social worker says. Another time Dominique tried to set her clothes on fire. In October the fifteen-year-old was put into a mental-health unit at Jackson, where she spent two weeks. Then she was placed in a foster home where she stayed until December. This past February Dominique died at the age of sixteen, bedbound, in a hospice unit at North Shore Hospital. She wasn't receiving any antiretroviral medication that suppresses the AIDS virus because it was too late for that. Instead she was on morphine for pain and antipsychotic drugs for dementia. "The medication she was getting was just to ease her suffering," laments attorney Alan Mishael.

Jackson's part in Dominique's suffering resulted from the institution's interpretation of an ambiguous state law and its unusual exception.

The law, known as Minors' Consent to Treatment, was passed in 1986. It states that health care professionals may examine and provide treatment for sexually transmittable diseases to any minor without consent of the parent. "Minors would not be deterred from seeking treatment out of fear that their parents would find out," says Sherry Riley of the Florida Department of Health's Bureau of HIV/AIDS. But the statute does not address the rights of minors who contract HIV perinatally or through blood transfusions. "This is the troublesome group," says Dr. Daniel Armstrong. "That's where we get into a real dicey issue, because at that point disclosure of the diagnosis to the child may also mean indirectly disclosing the parents' HIV status."

Jackson's attorney Jack Hartog insists his own interpretation of the law, on which the hospital has based its practice, is legally sound. "It's not absolutely clear that the provider has the legal right or duty to tell the child under Florida law in a case like this," Hartog explained in an interview before Mishael filed suit. He then allowed, "Every provider will have the same legal dilemma" in issues dealing with consent to minors who did not contract HIV as a sexually transmitted disease. "The way Florida law deals with it is that you call DCF and let the courts deal with a case involving arguable neglect," Hartog adds. "If you leave the responsibility of deciding what's best for a minor who is HIV-positive in the hands of doctors, there will be no uniformity or agreement among them on how to handle the situation. The bottom line is you want some third party.

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