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.

They were born with HIV. But Dominique and Jonathan grew up ignorant about their diagnosis because their mother refused to tell them. And health care professionals who had been sporadically treating them at Jackson Memorial Hospitaland the University of Miami would not disclose the information to the siblings without her consent. Not only did the mother withhold the vital information from her children, she also kept them from receiving potentially life-prolonging therapies. As a result Dominique and Jonathan (not their real names; all family members' names have been changed) did not take the necessary antiretroviral drugs, did not participate in clinical trials, and did not receive counseling.

Instead, usually during emergency situations, physicians scrambled to treat symptoms that had long been ignored. Dominique's and Jonathan's broken-down immune systems made them susceptible to any number of illnesses; sicknesses that could have been prevented were not, so life without them was unknown. But until recently the cause of their suffering was a mystery to them.

Finally in February 2000, with the approval of the Department of Children and Families (DCF),a team of specialists from publicly funded Jackson hospital and UM disclosed to then-thirteen-year-old Jonathan and fifteen-year-old Dominique that they had HIV. In Dominique's case the virus had developed into full-blown AIDS. A UM outpatient social worker who requested anonymity was among those who broke the news to the siblings. She remembers the teenagers responding bravely to the information, with few tears and many questions about how they had contracted the virus. "They were better informed about HIV than we expected," the UM social worker reveals.

Unfortunately the intervention came too late for Dominique. She died of complications from AIDS this past February.

To many the yearslong delay in informing teens about their HIV status is unacceptable. Such ignorance can have devastating results, not only for the individual patient but for the greater public health. There is a deadly risk to minors themselves and the chance of infection of others once those infected reach puberty. In this case it wasn't until the Jackson-UM team finally referred the case to DCF as medical neglect, and the state's child-welfare agency took the reins by assenting to disclosure, that at least Jonathan was given a fighting chance to prolong his life.

As a result Alan Mishael, a child-welfare attorney, is representing Dominique and Jonathan's older brother, Antoine, in a lawsuit against the County Public Health Trust (PHT), a Miami-Dade agency created by the county commission to run Jackson Memorial Hospital. Antoine is Jonathan's foster parent and is petitioning to become the personal representative of Dominique's estate. He learned of his family's health status just last year, in the impersonal setting of a courtroom, when a juvenile-dependency judge granted him temporary custody of his brother and sister.

Mishael says Jackson's policy requiring parental consent for disclosure to minors who contract HIV perinatally violates their constitutional rights. In Dominique's case, he adds, such a policy also violated her rights under provisions of the Medicaid Act, which requires public hospitals accepting federal funds provide treatment to Medicaid recipients. For patients under age 21, the federal law also requires public hospitals give early periodic screening and diagnostic and treatment services, none of which Dominique or Jonathan was able to access, though they were covered by Medicaid during most of the time they were patients at Jackson.

In the complaint, filed in federal court this past February 12, Mishael alleges that "as a proximate cause of the PHT's decision to gag [Dominique's] physicians, she was denied the autonomy and self-determination as a human being to take action to resist dying of AIDS, and lost the chance to extend and improve her quality of life."

The suit has highlighted an ambiguous state law that attempts to regulate issues involving AIDS, minors, and parental consent. It's an ambiguity that may have remained unchallenged had this case not come along. "Even though [Dominique] has died, one of the things her older brother wants to see happen is that there are no more Dominiques," Mishael says.

The loosely defined Minors' Consent to Treatment statute 384.30 is up for interpretation, says Jack Hartog, a Miami-Dade County assistant attorney who specializes in health care law and who consults for Jackson. To complicate matters many in the health care industry assert there are no clear guidelines stipulating when to report cases to DCF involving medical neglect of HIV-positive minors. In the end, says Mishael, thanks to Jackson's unwritten policy, the child-welfare system "got left holding the bag." On April 6, 2000, juvenile dependency judge Jeri B. Cohen removed Jonathan and Dominique from their mother's custody. Had DCF known about the case sooner, perhaps the intervention would have made a difference for Dominique. Instead Jackson's policy has resulted in one casualty in Miami-Dade County's fight against AIDS.

Sherry Riley, program administrator in the Florida Department of Health's Bureau of HIV/AIDS, says Dominique's case is the first of its kind in Florida she has come across. At issue is a child's right to know, a parent's right to confidentiality and control, and what the American Academy of Pediatrics (AAP) considers the "ethical obligation" of health care professionals to examine and counsel minor patients independent of their parents. "We really are in a situation where medical practice would indicate that we should have a mechanism to disclosing to teenagers," stresses Dr. Daniel Armstrong, a member of Jackson's Pediatric Bioethics Committee. "As it stands now, it's tremendously unclear. The legal conflict is that the rights of one person are infringing on the rights of another."

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