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.

Yet Peter Havens, also an AAP board member, warns that real-life situations aren't always that black and white. "You got doctors saying treat the kid; you got the family saying the child looks pretty good and the medicine makes him sick. It's not an easy equation. It really puts the rights of a family to determine their child's health care against the rights of a doctor to say do this. It's a very complex interaction."

Jack Hartog, the assistant county attorney who represents Jackson, admits he's not familiar with the AAP's recommendations. Instead he holds firm to what he calls the general rule of law.

Jackson pediatricians, however, many of whom also teach at UM (Jackson is UM's teaching hospital), know the AAP's guidelines well. But in order for the AAP perspective to take effect, there have to be statutory changes, says Dr. Daniel Armstrong. "[Jackson's Pediatric Bioethics Committee] is trying to develop a policy to effect legislation that will help to clear the air and provide a framework for national policy," Armstrong says.

Jackson and UM staff members who work with pediatric AIDS patients and who have sporadically dealt with Dominique and Jonathan are frustrated with the bureaucracy. "If a parent is adamant about a child not knowing about his or her illness, then there's nothing we can do," complains a Jackson employee. "The child may continue receiving treatment though they won't know what for. They can't be educated on their illness, and they can't participate in support groups with other infected children. They can't get counseling; the hospital cannot better prepare them throughout their developmental years. It becomes especially problematic when they start entering sexual maturity. This case has divided so many people."

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