Some infants with AIDS or at risk for the disease are likely being deprived of life-prolonging treatment for unrelated ailments, say researchers who surveyed 247 neonatal specialists. One of the more disturbing findings was the number of specialists who said they would withhold certain treatments in infants considered at risk for AIDS because the mothers had the disease, said lead author Betty Wolder Levin, an anthropologist with Brooklyn College in New York City.
"Some respondents said that children born to women with AIDS would have a poor quality of life whether they were infected or not, because the infant's mother would die and because the infant would have a poor social environment," Levin and colleagues wrote in today's Journal of the American Medical Association.
"For a health-care provider to make decisions on what they perceive to be a social situation for the baby is very dangerous," Levin said.
A baby whose mother is dying of AIDS may have other relatives who can provide a loving environment, she said.
"These are life-and-death decisions," she said. "Because people can live so long with HIV, they may have better quality of life if they do receive treatment for other conditions."
Because the survey posed hypothetical questions, there's no proof that in practice AIDS infants are not receiving appropriate treatment, Levin said.
"It suggests that it's a way that people are thinking about this, and it's likely that in fact decisions are being made this way," she said.
"The results indicate that there is indeed a potential risk," said Dr. Nancy Dickey, an AMA trustee and former member of an AMA ethics council.
Previous studies involving older AIDS patients found similar results, but this is the first survey of its kind that examined treatment choices in infants, Levin said.
Levin and two neonatologists described hypothetical situations in questionnaires given to physicians and other professionals at six New York hospitals in 1989.
For example, participants were asked whether they would recommend cardiac surgery for an infant with a heart defect.
Ninety-seven percent said they would recommend surgery if the infant had no known AIDS risk; 77 percent would choose surgery if the infant's mother had AIDS; and only 42 percent would make the recommendation for an AIDS-infected infant.
Respondents did not recommend withholding invasive treatment because they were afraid of getting AIDS, Levin said.
In most cases, respondents said their recommendations were based on concerns for the infant's potential quality of life, she said.