One month after the premature birth of her son Andrew, Peggy Stinson wrote in her journal:
What threatened to be a simple, private sorrow has changed unexpectedly into something so altogether different, so altogether complicated that thoughts and feelings tangle hopelessly and give no guidance.
Andrew is not our baby anymore—he’s been taken over by a medical bureaucracy. The bureaucracy controls Andrew—access to Andrew, information about Andrew, decisions about what will happen to Andrew. It rolls inexorably onward, oblivious to our attempts to communicate, participate; oblivious equally to angry reaction and attempts to reconcile.
If this sounds bad, it’s not half so bad as it will be if President Reagan gets his way. The Stinsons’ problem was that they had doctors who followed a rigid ethic of preserving life at virtually any cost, and they could not get their son out of the hands of their doctors. Now, however, the president who promised to cut back on the intrusion of big government into the private lives of American citizens is taking steps to ensure that even when parents, doctors, and a hospital “Infant Care Review Committee” agree on the best course of action for an infant born severely handicapped, there will be another layer of bureaucracy—the federal government—to step in and see that the baby is treated, regardless of what the parents and their doctors think.
The Long Dying of Baby Andrew consists of the daily journals in which Peggy and Robert Stinson recorded their private thoughts between December 1976 and June 1977. At the beginning of that period, Mrs. Stinson was twenty-four weeks pregnant and the pregnancy was going seriously wrong. The Stinsons contemplated an abortion to avoid the risk of a life-threatening hemorrhage, but decided against it. A few days later the pregnancy began to miscarry. Mrs. Stinson was rushed to the hospital (in a town she does not identify) where, to everyone’s surprise, a baby was born alive, weighing one pound twelve ounces. The doctors expected the baby to die, but Andrew struggled on.
Against the Stinson’s better judgment, they were persuaded to allow him to be taken from the local community hospital to a downtown specialist pediatric hospital with a neonatal intensive care unit. There, despite a host of problems including periodic fits, infections, and a very uncertain prognosis for mental development, Andrew was put on a respirator and all the resources of modern medical technology were used to keep him alive. The Stinsons repeatedly made it plain that they did not want these heroic measures to be taken. Their wishes were ignored. Not until June 14 did Andrew die. Mrs. Stinson wrote in her journal, “Modern medicine makes possible a sad new epitaph: He died too late for grief.” The hospital sent the Stinsons a statement listing charges of $104,403.20. The doctor in charge told them: “We were all lucky to get out of this as easily as we did.”
The most unusual thing about Andrew Stinson’s case is that he had educated, articulate parents who were angry at what had happened and chose to write about it. More often, parents either do not fully understand what is happening to their baby, or they feel so powerless that they do not even protest. For instance, in doing research on this issue, we received a letter from a distinguished British pediatrician describing a visit to an American university hospital. During a ward round in the neonatal intensive care unit, an eighteen-month-old infant suffered a cardiac arrest and was resuscitated. The pediatrician was told that the infant had no forebrain, which means it had no potential for intelligent life. Moreover this cardiac arrest was the infant’s twentieth—it had been resuscitated each time. When the British pediatrician expressed his amazement at such a practice, his American colleague privately agreed that it was both pointless and very expensive, but said that the pressure from “pro-life” groups and the law was so great that he felt he must persist in attempting to preserve life.
The Stinsons’ book is timely, for it presents the parent’s point of view at a time when the Reagan administration is trying to impose its conservative and religiously motivated moral attitudes on the rest of the community. Apparently unable to do anything to stop women from making their own decisions about terminating pregnancy (unless the women happen to be poor), Reagan has shown his support for the pro-life groups by interfering with family decisions in that most tragic, personal, and delicate of situations, the birth of a severely handicapped infant.
Reagan’s actions stem from the now-famous “Baby Doe” case (not to be confused with the more recent case of Baby Jane Doe in New York). The original Baby Doe was born on April 9, 1982, in Bloomington, Indiana, with Down’s syndrome (also known as mongolism) and a blockage in the digestive system. Without surgery to remove the blockage, such a baby will die. The prospects for successful surgery were fair, but even if surgery were successful, of course, the underlying mental retardation would be unaffected. For this reason the parents refused to consent to surgery. Both the county court and the Indiana Supreme Court upheld the parents’ right to make this decision. Before an appeal to the United States Supreme Court could be mounted, Baby Doe died.
Public reaction to this case began with outraged protests from the “right-to-life” movement, but soon spread beyond these circles, with The Washington Post and The New York Times both editorially deploring the decision. Letters of protest began to flow into Congress and the White House. The White House responded with unusual speed. In a memorandum dated April 30, 1982, President Reagan ordered Richard Schweiker, Secretary of Health and Human Services, to ensure that federal laws protecting the rights of handicapped citizens were being adequately enforced. In particular, the president instructed Secretary Schweiker to notify all who provide health care that section 504 of the Rehabilitation Act of 1973 forbids medical institutions receiving federal funds to withhold from handicapped citizens, simply because they are handicapped, any benefit or service that would ordinarily be provided to people without handicaps. Regulations under this law, the president continued, prohibit hospitals receiving federal assistance from discriminating against the handicapped. President Reagan then instructed the attorney general to report on constitutional and legal means of preventing the withholding from the handicapped of potentially life-saving treatment. His memorandum concluded with the following words:
Our Nation’s commitment to equal protection of the law will have little meaning if we deny such protection to those who have not been blessed with the same physical or mental gifts we too often take for granted. I support Federal laws prohibiting discrimination against the handicapped, and remain determined that such laws will be vigorously enforced.
In accordance with the president’s instructions, the Secretary of Health and Human Services sent 6,800 hospitals a “Notice to Health Care Providers.” The notice told hospital administrators that it was
unlawful for a recipient of Federal financial assistance to withhold from a handicapped infant nutritional sustenance or medical or surgical treatment required to correct a lifethreatening condition if
(1) the withholding is based on the fact that the infant is handicapped; and
(2) the handicap does not render treatment or nutritional sustenance contra-indicated.
Hospital administrators were told that they would have federal government funds cut off if they allowed handicapped infants to die when nonhandicapped infants to in similar circumstances would be saved. The “Notice” was saying, in effect, that no matter how severe an infant’s handicap might be, the efforts made to preserve its life must be no less than the efforts that would be made to preserve the life of a nonhandicapped infant in an otherwise similar condition.
When confronted with complex ethical questions, one is tempted to look for a simple answer. The Reagan administration has found its simple answer in the idea that all human life is of equal worth. That is the answer that lies behind the “Notice,” and its appeal to a principle of “nondiscrimination” against infants born with severe handicaps.
This simple line about the equal worth of all human lives is the basis of Reagan’s own excursion into moral philosophy, his article “Abortion and the Conscience of the Nation,” in the spring 1983 issue of The Human Life Review. After writing proudly of his action in applying civil rights regulations to “protect” handicapped newborns, he quotes both the Declaration of Independence and Abraham Lincoln to make the point that we must regard all lives as being of equal value.
We shall soon see that this position cannot be taken seriously. No one, not even Reagan’s own surgeon general, Dr. C. Everett Koop, a man much admired by right-to-life groups and praised by Reagan himself in the article just mentioned, can carry it out in practice. But to appreciate this, we must first return to the story of the administration’s response to the Baby Doe case.
Strong as its language was, the “Notice” was not sufficient for the White House. In March 1983 the Department of Health and Human Services therefore issued a more forceful follow-up regulation. Officially, the new regulation had the contradictory title “Interim Final Rule,” but it has become known as the “Baby Doe guidelines.” These guidelines specified that a poster was to be conspicuously displayed in each delivery ward, maternity ward, pediatric ward, and intensive care nursery. The department sent out large, seventeen-by-fourteen-inch posters with heavy black lettering which read as follows:
Department of Health and Human Services Office for Civil Rights
DISCRIMINATORY FAILURE TO FEED AND CARE FOR HANDICAPPED INFANTS IN THIS FACILITY IS PROHIBITED BY FEDERAL LAW.
SECTION 504 OF THE REHABILITATION ACT OF 1973 STATES THAT
“NO OTHERWISE QUALIFIED HANDICAPPED INDIVIDUAL SHALL, SOLELY BY REASON OF HANDICAP, BE EXCLUDED FROM PARTICIPATION IN, BE DENIED THE BENEFITS OF, OR BE SUBJECTED TO DISCRIMINATION UNDER ANY PROGRAM OR ACTIVITY RECEIVING FEDERAL FINANCIAL ASSISTANCE.”
Any person having knowledge that a handicapped infant is being discriminatorily denied food or customary medical care should immediately contact:
Handicapped Infant Hotline
US Department of Health and Human Services
Washington, D. C. 20201
Phone 800-368-1019 (Available 24 hours a day) TTY Capability
In Washington, D. C., call 863-0100
Your State Child Protective Agency.
Federal Law prohibits retaliation or intimidation against any person who provides information about possible violations of the Rehabilitation Act of 1973.
Identity of callers will be held confidential.
Failure to feed and care for infants may also violate the criminal and civil laws of your state.
Later in the year, the administration worked out the finer details of how to enforce the notice. It was decided to set up a special “Baby Doe Squad.” According to a March 4, 1983, memo from the deputy director of program operations to Betty Lou Dotson, director of the Office for Civil Rights within Health and Human Services, the Baby Doe Squad was to consist of “cadres especially selected and trained” who would be provided with individually numbered copies of “Baby Doe complaint” investigation procedures, which were not to be duplicated or released outside the Office for Civil Rights. Depending on the nature of the complaint, one, two, or three squad members would be immediately dispatched to the hospital site, where they would have power to demand hospital records and to interview all relevant personnel. These “special squad assignments” were to “take precedence over any and all assignments.”