The U.S. Supreme Court handed the medical community a significant triumph last week when it struck down federal regulations requiring hospitals to provide life-prolonging treatment to virtually all severely handicapped newborns.
For the moment, the battle over whether it is morally justified to withhold medical care from infants with devastating birth defects has gone against those who argue that the sanctity-of-life principle demands treatment, no matter how bleak a child`s future. For the right-to-life movement, which also suffered a Supreme Court defeat last week on the abortion question, the
”Baby Doe” ruling comes as a bitter blow.
The 5-3 decision, which marks the first time that the court has ventured into the philosophical bog surrounding the so-called ”right to die,”
indicates the justices may well adopt a more liberal attitude in future bioethical cases, emphasizing the right of privacy and individual choice over the authority of government to intervene to preserve the life of its citizens.
Yet, in the wake of the ruling, there was little exultation among the victors, primarily for three reasons.
First, in the words of Dr. Robert Prentice, acting executive director of the American Academy of Pediatrics: ”This is not the kind of thing you gloat over. We are just seeking a reasoned approach to a very difficult problem.”
Second, the ruling does not mean government will stop peering over a physician`s shoulder as he or she treats sick infants. A federal law, which took effect last autumn, in theory already compels hospitals to provide life- supportive care in all but the most hopeless cases.
The law makes states, not federal authorities, responsible for enforcement. Its provisions, while weak and inconsistently enforced, may have had a psychological impact on physicians who, some charge, are being intimidated into overtreating marginally viable infants.
Finally, the medical community suspects that it is not yet out of the woods of federal intervention. There is fear that the Reagan administration, which authored the Baby Doe regulations that were at issue in Monday`s ruling, is getting ready to launch a new effort to pass legislation that would meet the Supreme Court`s objections.
It is a fear not without foundation. ”It`s quite possible we will pursue further action. It`s under study,” said a spokesman for the Department of Health and Human Services, which drafted the now-defunct rules.
And President Reagan himself, at a Wednesday press conference, may have tipped his hand when he said of the court`s action, ”If we interpret the decision right . . . their objection was not to what we were trying to accomplish.” Rather, the President said, it was to how the administration was going about it. ”So what we have to do,” he told reporters, ”is look for what are the proper ways we can do this . . . I just don`t think we`re finished with the problem at all.”
The controversy over handicapped infants has been growing for more than a decade, with the ever-advancing pace of medical technology. The nation`s 700 modern intensive-care nurseries can salvage the lives of thousands of desperately ill newborns whose birth defects formerly would have doomed them to early deaths.
Yet many of these children suffer from additional defects so devastating as to greatly impair their ability to think, move about and relate to other human beings.
In the eyes of some people, the gift of life without the gift of meaningful function is no gift at all. To others, however, all life, no matter how limited or painful, is a precious commodity and is not to be denied to a child at the discretion of another person–even a parent.
The issue of allowing very damaged babies to die without aggressive medical care first surfaced in medical circles in the early 1970s, but it did not really come to national attention until 1982.
In that year, a Bloomington, Ind. couple, told that their child had Down syndrome (a genetic cause of mental retardation) as well as a suspected heart defect and a defect of the esophagus and windpipe that prevented eating, refused to allow an operation to create a makeshift esophagus.
The child, called Baby Doe by the news media, died six days later. This caused the administration to warn hospitals that as recipients of federal funds, they were obliged by Section 504 of the 1973 Rehabilitation Act, which protects the handicapped from discrimination, to treat all disabled infants, regardless of parental preferance.
The warning later was formalized into the Baby Doe regulations, which invited tipsters to call a Washington hotline if they felt an infant was being medically neglected, and empowered Health and Human Services ”flying squads” to descend on accused hospitals to make investigations.
A 1983 episode, involving a Long Island, N.Y., girl with multiple handicaps, including an open spine that would leave her paralyzed and brain damage that ensured profound retardation, became the test case for the new regulations. It pitted the Justice Department against a number of medical organizations, which argued strenuously that the federal government has no business meddling in sensitive and complicated treatment choices that are the proper province of families, in consultation with physicians.
A U.S. appeals court found that Congress did not intend Section 504 to apply to medical care of handicapped infants. An appeal by the Justice Department led to last week`s Supreme Court decision.
In its ruling, the high court took a narrow focus, finding that the government failed to show a single instance in which a hospital discriminated against a handicapped baby or turned away a child whose parents wanted it to be treated.
Where parents had declined consent to treatment, the court said, explanations other than bias against the disabled could be advanced for a hospital`s failure to treat, notably the institution`s fear of being sued.
The court left untouched the more difficult question of whether parents are ever legally or morally correct in denying treatment. Yet the absence of castigation of such parents was notable in itself, and the emphatic language of the opinion left little doubt about the court`s position.
”This case will stand as an important precedent for limiting the role of government in attempting to assert itself in medical decision-making,” says Kirk Johnson, general counsel of the American Medical Association, one of the parties to the suit. ”The strong language of the decision gives it implications that go far beyond its narrow holdings.”
However, right-to-life spokesmen, while deploring the court`s decision, predicted an attempt will be made to circumvent the Supreme Court`s decision. ”It looks like we will simply have to go back to Congress and hold hearings and specifically amend Section 504 to cover disabled babies,” said Clarke Forsythe, staff counsel with Americans United for Life. Reminded that in the Supreme Court`s view, it would still not oblige hospitals to override parents, Forsythe said: ”For 50 years, hospitals have routinely gone to court to reverse parental decisions involving Jehovah`s Witnesses who don`t want blood transfusions for their child. Why is this any different?”
Meanwhile, an amendment to the 1984 federal child abuse law continues to make withholding of treatment from disabled newborns a form of child abuse and compells states to set up procedures to prevent it. So far, states appear to have been lax in enforcing the provisions, and HHS admits it has no real mechanism for evaluating how well states are complying.
Dr. Thomas Gardner, director of neonatology at Evanston Hospital, says that ”other than affecting paperwork,” the new law has had no affect on operations in his nursery. He conceded that right to life activists may try to make things tough, but said: ”I`m naive enough to think that if we handle these types of situations appropriately, involving families, physicians, and family backup teams, we should be able to avoid problems. At least, I hope so.”
