Hospital fights court order favoring unconscious baby Most of infant's brain is missing

September 24, 1993|By New York Times News Service

WASHINGTON -- In a case raising timely issues of health care policy as well as profound questions of medical ethics, a hospital suburban Virginia is appealing a Federal District Court's ruling that it must continue to provide life-sustaining treatment for a baby born there 11 months ago with most of her brain missing.

The condition, a congenital defect known as anencephaly, is incurable and quickly fatal without medical intervention. An anencephalic baby has a brain stem, which keeps the heart and other organs working for a time. The baby does not meet the legal definition of brain death. Lacking a cortex, it is permanently unconscious, without sensation or cognitive functions.

The mother in this case, acting out of a "firm Christian faith that all life should be protected," as the court's opinion described her position, has insisted that everything be done to keep the baby alive. The baby, who is being cared for in a nursing home, has periodic respiratory crises, requiring readmission to the hospital's pediatric intensive care unit and the aid of a mechanical ventilator to breathe during those crises.

Although many details of the case have been kept secret under a protective order issued by the court, it has galvanized medical ethics experts around the country who have learned of it. They are watching with fascination and concern to see whether the long-running debate over patient autonomy and the "right to die" is about to take a new turn.

This latest case is a mirror image of some of the most highly publicized cases of the last decade in which parents refused or sought to end treatment that doctors wanted to provide for catastrophically damaged children. As the earlier cases did, this one also poses profound questions about the appropriate limits of parental decision-making and medical intervention.

It is almost unheard of for an anencephalic baby to live as long as this one has, and doctors and lawyers familiar with the case say they know of no other instance of a parent insisting on continued treatment under these circumstances.

The mother has rejected the recommendations of doctors in the case as well as those of a specially appointed panel of the hospital's ethics committee that no further treatment be undertaken. She had rejected doctors' recommendations to have an abortion when the anencephaly was diagnosed before the baby was born at Fairfax Hospital in Falls Church, Va., on Oct. 13.

The hospital, which was uncertain of its legal liability under federal law if it overrode the mother's wishes, took the case to Federal District Court in Alexandria, Va., last spring. The hospital asked for a declaration that it would not be violating any of several federal laws governing either hospital admissions or discrimination against the handicapped if it refused to provide treatment the next time the baby needed it.

The American Academy of Pediatrics filed a brief supporting the hospital, on the ground that life-sustaining treatment for an anencephalic baby was medically inappropriate.

To the hospital's astonishment, Federal District Judge Claude M. Hilton ruled on July 1 that the hospital's refusal to treat the baby's next respiratory crisis would violate not only three federal laws, including the recently enacted Americans With Disabilities Act, but would also violate the mother's constitutional right under the 14th Amendment's due process clause to "bring up children" in the way she thinks best.

Judge Hilton's sweeping ruling, as well as the appeal to be argued next month before the 4th U.S. Circuit Court of Appeals in Richmond, have received almost no public attention. The judge granted the hospital's request for a protective order when the case was filed, placing all documents in the case under seal. The hospital based its request on what it said was the need to maintain the confidentiality of medical records.

Without explanation, Judge Hilton released the opinion for publication last week in a form that continues to shield the identity of the parties, including the hospital. The New York Times learned from a person familiar with the case that the hospital is the 656-bed Fairfax Hospital, a highly regarded medical center that delivers some 8,500 babies a year, more than all but about 10 hospitals in the country.

A lawyer for the hospital then confirmed the identity, but declined to provide further details.

The cost of the baby's care is covered by the mother's private medical insurance, which an outside source identified as the Kaiser Permanente health maintenance organization. The basic charge for room, board and care in Fairfax Hospital's pediatric intensive care unit, in which the baby has spent about four months since her birth, is $1,464 a day.

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