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:: By Sara Michael

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Investigations ::

Baby steps

By its nature, neonatology is a knotty discipline, concerned as it is with the diseases and disorders of newborns. Crises can crop up quickly, and—for both physicians and parents—the thicket of medical and ethical decisions is often hard to navigate.

But the last 30 years have seen the clearing of a few reliable paths through the woods, says John Lantos, a pediatrics professor at Chicago. Associate director of the MacLean Center for Clinical Medical Ethics, Lantos has authored two books on bioethics. Due in May 2006 is his latest such volume, Neonatal Bioethics: A Success Story (Johns Hopkins University Press). In it Lantos and coauthor William Meadow, professor of neonatology, trace the past several decades of infant care, weaving together accounts of medical advances, regulatory oversight, and ethical reflection.

“What used to take open-ended deliberation by multidisciplinary ethics committees has now been solved,” Lantos says. “The complex, simultaneous equations of professionalism, parents’ rights, economics, and religion that are all wrapped up together have been solved in the sense that, at least in the U.S. today, we have reached a fairly widespread, if tentative, agreement on how to do it.”

That agreement on how to parse neonatal-care conundrums evolved simultaneously on several fronts, Lantos explains. Doctors argued their views in medical journals; malpractice cases brought the issues into the courtroom; philosophers, physicians, and other stakeholders hashed things out in bioethics committees; and the media weighed in on editorial pages.

A typical preemie story, Lantos says—and one made easier by the last 30 years of negotiation—is that of a 1.3-pound, 25-week baby on a ventilator. After 24 hours the baby develops a severe lung disease and cerebral bleeding. The child has a 50 percent chance of dying, and, if he survives, a 30 percent chance of severe neurological disability, Lantos posits. The ethical difficulty lies in how to discuss the baby’s situation with the parents. “A doctor could emphasize the positive or the negative,” Lantos says. “Both are true, but they lead parents in different directions. ... Individual doctors have a tremendous amount of moral freedom. We try to teach them to exercise that freedom responsibly.”

So as physicians have grappled with the mechanics of keeping ailing newborns alive, a parallel system of ethics has developed around what to consider when deciding on care. Generally, that system—an unwritten but widely respected understanding—holds that no one party is uniquely privileged to declare a child better off alive or dead, says Lantos, but that all final decisions should rest with the parents.

At least one component of that understanding, however, is written down; it’s court record. The 1982 case of Baby Doe, an infant born with Down syndrome and esophageal atria, firmly established the primacy of parental prerogative, Lantos says. After hearing contradictory prognoses for surgery to fix their infant’s malformed esophagus (which, untreated, left the baby unable to absorb food), the parents refused consent for the procedure. Pediatricians filed a lawsuit charging neglect, but state courts disagreed. Before the U.S. Supreme Court could hear the case, Baby Doe died.

Out of the ensuing controversy—intensified by the 1983 birth of Baby Jane Doe, a newborn with spina bifida and other complications whose parents, also facing conflicting medical advice, opted against treatment—emerged detailed federal regulations for treating newborns with congenital birth defects. Those were struck down, but in 1984 Congress voted to add the denial of fluids and nutrition for infants with birth defects to the federal definition of child abuse. That law has held, and Lantos says the situation yielded vague limits on what treatments parents can refuse; they can deny care that is “futile,” but nowhere is futility specifically defined.

Today infants in the neonatal intensive care unit (NICU), Lantos says, fall into three categories: full-term babies with an acute medical problem, babies with an unfixable congenital anomaly such as Down syndrome, and preemies. While the first two groups prompt issues of resource allocation and quality of life, premature babies present a particular challenge, he says, because their outcomes are uncertain.

“Presumably, if knowledge is the criteria, then doctors know best,” Lantos says. “But if you go down that slippery slope, you end up in a situation where doctors extend their authority beyond their expertise.” A physician can say that if a newborn survives, his IQ won’t rise above 30, but a doctor cannot judge whether that life is worth living.

Some physicians fear that parents don’t fully grasp the complexities of neonatal care, and that—the Baby Doe cases notwithstanding—parents will want to try any treatment to save their child, despite the emotional and economic costs. But studies have shown that parents do understand the complexities; sometimes they simply disagree with doctors. Not often, though: Lantos says conflicts between doctors and parents are rare.

Yet media outlets amplify the disagreements. According to Meadow, the NICU is often painted as a chaotic place. “The general tenor of most of what is written about ethics in the NICU is that it is sort of whimsical, haphazard, and worrisome from a societal point of view,” Meadow says. For example, in the 1983 book The Long Dying of Baby Andrew, parents chronicled the life of their premature son and their struggles to get reliable information on his condition. Although such devastating cases make headlines, feed memoirs, and influence public opinion, most NICU dilemmas are less black and white. So are their solutions. As with Lantos’s hypothetical 25-week preemie, the usual predicament is discussing the situation with parents, who often are more optimistic and rate the baby’s quality of life with a disability higher.

Not everyone cheers the broad agreement Lantos and Meadow describe. Decrying the state of neonatal bioethics, some parents insist doctors are focused more on the newborn than on parental concerns, while some neonatologists argue parents should have less control. Some policy makers deem NICUs a bad investment altogether.

But Lantos defends neonatology’s 30 years of complex debate. Loose and limited, the resulting consensus doesn’t always avert tragedy, but it nevertheless “balances fundamentally conflicting impulses.”