The Stormy Legacy of Baby Doe

By Claudia Wallis

Should the Government try to save severely afflicted infants?

On April 9, 1982, an infant who became known to the world only as Baby Doe was born in Bloomington, Ind. He had an incomplete esophagus and Down's syndrome, which causes moderate to severe mental retardation. Thanks to advances in neonatal medicine, surgeons could ensure Baby Doe's survival by attaching his esophagus to his stomach, but nothing could be done to prevent retardation. His parents were confronted with an agonizing dilemma: to assent to an operation that would save the life of a child who could be hopelessly retarded, or to allow him to die of starvation. Against the wishes of their pediatrician and hospital, they chose the latter. The parents' right to this choice was twice challenged in the courts by the hospital and twice upheld. On April 15, Baby Doe died.

His legacy is today one of the most fiercely debated controversies in medicine. At issue: how to protect the rights of severely handicapped infants, and what role the Federal Government should play. Locked in the battle are three factions-doctors, handicapped citizens' groups and right-to-life organizations. Last week, as the Reagan Administration reviewed its stand, it came under concerted attack by the medical profession in the form of two blistering editorials in the prestigious New England Journal of Medicine.

The Baby Doe debate was ignited by the President. Outraged by the case, Reagan ordered the Department of Health and Human Services to ensure that handicapped infants would receive proper medical care even if their parents or physicians were willing to let them die. In May 1982, the department informed the nation's 5,800 hospitals that they could lose federal funding if they withheld treatment or nourishment from handicapped infants. This edict was followed by a tougher regulation requiring hospitals to post large signs in public places bearing the inscription "Discriminatory failure to feed or care for handicapped infants in this facility is prohibited by federal law." The posters provided the number of a 24-hour, toll-free hotline for anonymous informers who wanted to report violations to federal investigators.

Doctors and medical organizations were outraged by this unprecedented intrusion of the Federal Government into matters that traditionally have been settled privately between physicians and parents. The new rule implied that doctors and parents could not be trusted to act in the best interest of a handicapped child. No less infuriating to physicians was the rule's assumption that all congenital defects could be handled in the same manner, that any child's life, no matter how tenuous, painful and illfated, should be sustained for as long as is technically possible.

The American Academy of Pediatrics, the American Hospital Association and a number of other professional organizations took the HHS to court over the Baby Doe rule and won. District Court Judge Gerhard Gesell last April found the regulation to be "arbitrary" and "ill-considered." Three months later, HHS issued revised regulations, which conceded that there was no need to impose "futile therapies" on terminally ill infants.

The Government argues that the in former system developed by the hotline has been effective. As of last week, there had been 33 accusations that hospitalized infants were not receiving proper care. In eleven cases, the Government dispatched teams composed of doctors and civil rights investigators. The squads found nothing to criticize on eight visits, but were able to help save the lives of three handicapped infants whose doctors seemed to be unaware of new techniques for treating birth defects.

The pediatricians and allied medical groups argue that the best way to help such afflicted babies is by better educating doctors about medical advances, not by sending in federal watchdogs. Hospitals charge that some of the investigative teams disrupted neonatal clinics. Such disturbances led the A.A.P. to protest that "the Government's 'remedy' is potentially harmful to the very infants it seeks to protect."

As an alternative to direct federal interference under the Baby Doe rule, the pediatricians, the A.H.A. and five other medical groups propose that all hospitals be required to create "infant bioethical review committees" to protect the rights of handicapped newborns. These committees, composed of medical experts, laymen, clergy and lawyers, would be consulted in any decision to forgo treatment.

The groups would also try to resolve any conflict between parents and doctors over how to proceed. Should parents refuse to approve treatment that would clearly benefit their child, the committee could ask state agencies and courts to appoint a guardian.

Such an approach is unacceptable to groups representing the handicapped and right-to-life organizations. "The problem is how to ensure the rights of the handicapped to treatment, when the parents, doctors and the hospital agree not to provide it," says Gary Curran of the American Life Lobby. Another worry is that a bioethics committee could not act quickly enough. Warns Paul Marchand, of the Association for Retarded Citizens: "If these infants are not treated within days, hours, they will die."

The Department of Health and Human Services has reservations about the proposal to create ethical review committees. "The problem is there wouldn't be any enforcement," says John Svahn, who was recently promoted from HHS Under Secretary to Assistant to the President for Policy Development. The department hopes to come to a final judgment in the next few weeks. If the hotline and what some doctors deride as investigative "goon squads" are not eliminated, the medical organizations have threatened to take the Reagan Administration to court again. --By Claudia Wallis. Reported by Anne Constable/Washington and Sheila

Gribben/Chicago

With reporting by Anne Constable, Sheila Gribben This file is automatically generated by a robot program, so viewer discretion is required.