Selective nontreatment of handicapped newborns: moral dilemmas in neonatal medicine.

BEYOND INFANT DOE

Selective Nontreatment of Handicapped Newborns: Moral Dilemmas in Neonatal Medicine, by Robert F. Weir (Oxford, 229 pp., $27.95)

In April 1982 a severely deformed baby boy was born in Bloomington, Indiana. Known to the public only as "Infant Doe," the baby became the center of a stormy controversy when his physicians found themselves divided over the question of his treatment. One group wanted to transfer him to Riley Children's Hospital in Indianapolis, where they anticipated positive results from surgery; another group, less optimistic about the baby's chances, felt that no extraordinary measures should be taken to save his life. When the baby's parents were consulted, they chose to keep him in Bloomington, without surgery and without intravenous feeding.

Over the weekend that followed, the administrators of Bloomington Hospital tried to obtain a court order to override the parents' wishes, but the judge ruled that "the parents had the right to withhold medical treatment in order that the baby would die." An appeal to the Indiana Supreme Court also failed, "apparently because "the justices] were concerned about second-guessing physicians on medical matters." Prosecutors then planned to appeal to the U.S. Supreme Court and were en route to Washington when Infant Doe died, on the seventh day after his birth.

The Infant Doe case generated wide publicity and much comment. It also raised a host of unsettling questions about medical technology and our attitudes toward those on the fringes of life: Are there times when death would be preferable to severely handicapped life? Should all available medical means be brouth to bear on seriously deformed infants? Who decides for life or death--the parents? physicians? the courts? In this book Robert F. Weir, a professor of religious studies at Oklahoma State University, examines these and other questions, and concludes that there are times when infanticide or "selective nontreatment of handicapped newborns" is "in the best interests of the child."

The problem of infanticide is as old as the human race. At times past, infants were left to die of exposure if they were female and unwanted or if the family could not support them. Deformed babies were thought to be "changelings," servants of the devil, and were often beaten to death in attempts at exorcism. Unrecognized bastards were consigned to the tender mercies of homicidal wetnurses or overcrowded foundling hospitals where their chances for survival were slender at best. Even today we read of newborn babies found abandoned in dumpsters or alleyways, victims of their own mothers. If acts of infanticide have anything in common it is this: "The younger the child, the more vulnerable to acts of destruction."

Although the problem is an old one, the high level of life-sustaining technology available to modern physicians in neonatal intensive-care units (NICUs) provides "the modern context for instances of infanticide." Some 200,000 infants each year are admitted to NICUs with deformities of varying degrees. In the overwhelming majority of these cases the infants either die from their afflictions or respond to treatment and eventually return home. In some cases, however, infants die because a conscious decision has been made by NICU physicians, generally in consultation with the parents, to withhold treatment.

The decision to withhold treatment from seriously defective infants depends on the medical evaluation of each case and the personal values of the physicians involved. While "a national survey of pediatricians and pediatric surgeons revealed substantial agreement with a policy of selective nontreatment," there is little consensus as to when treatment should be withheld. Raymond Duff of Yale-New Haven Hospital, for example, would trate "the vast majority of children with handicapping abnormalities or diseases," but would withhold treatment "if there is little or no prospect of brain function sufficient to allow a personal life of meaning and quality . . ." Where deformities are so severe that the children involved have "little or no capacity to love or to be loved," Dr. Duff believes that "choosing death sometimes is viewed as an act of love because some life can only be wrongful." During a period of thirty months after a policy of selective nontreatment was instituted at Yale-New Haven, 43 infants died after treatment was withdrawn.

A far different opinion is held by Dr. C. Everett Koop, U.S. Surgeon General and former surgeon-in-chief at Children's Hospital in Philadelphia. Dr. Koop faults many of his colleagues for overestimating the severity of defects and for basing their judgment on the impact a defective infant may have on its family. For Dr. Koop, "the question which must be answered is not 'Should we treat?' but 'How should we treat?'" As a Christian, Dr. Koop holds the firm belief that all life is a sacred gift from God, which leads him to withhold extraordinary measures only from infants whose maladies are "terminal regardless of their age." Quality-of-life considerations do not enter into treatment decisions, because "disability and unhappiness do not go hand in hand"--"there is remarkable joy and happiness in the lives of most handicapped children," even though many of them have handicaps that he personally "would find difficult to endure."

It is not possible in a short review to examine the opinions of the other pediatricians cited by Mr. Weir. What is important to remember is that many infants die each year because doctors and families lack consistent, clear legal or ethical guidelines. This confusion and uncertainty extend to the legal community, which has not yet made up its mind whether to enforce existing criminal sanctions more vigorously, to legalize euthanasia in cases where infants suffering from "severe, incurable, and irremediable medical conditions" would be "better off dead," or to give more discretion to parents and physicians.

Nor is there consensus among ethicists. At one end of the ethical spectrum is Paul Ramsey, formerly of Princeton University, who believes that quality-of-life considerations should not be the basis for withholding treatment for two reasons: first, the deformed infant "inevitably loses out in the comparison with a normal infant who will have a 'life worth living'"; second, we further devalue the lives of birth-defective children when we assume that "a particular human life is replaceable by another." Ramsey would replace quality-of-life standards with an "equality-of-life" principle, whereby decision-makers emphasize "the equal and independent value of each and every young life . . . regardless of their state or condition." Physicians are encouraged to focus on the medical indications for treatment, Asking, "Will a particular medical procedure succeed, regardless of the infant's other problems?" Generally speaking, "for virtually all . . . nondying infants, whether defective or normal, parents and physicians have a normal duty to provide treatment."

Mr. Weir aligns himself with those ethicists who believe the focus of attention should be on the best interests of the child: "As potential persons, neonates have prima facie claims to life and medical treatment necessary to prolong life. Although there are some instances in which these prima facie claims are justifiably overridden by other considerations, such considerations should have only one focal point: the best interests of the anomalous child. No potential or actual child should be deprived of life without good reason ..." What circumstances would constitute a "good reason" to deprive a child of life? Mr. Weir discusses four: a "prognosis of extremely short life expectancy," which he defines as death within the first year of life; conditions for which there are "no curative or corrective treatments" and which mean "progressive neurological and physical deterioration that is simply impossible to prevent or minimize"; "serious neurological deficiencies"; and a "multiplicity of other serious medical problems" (emphasis his). When these conditions exist, the decision to withhold treatment should be made by "a serial ordering of decision-makers" including the attending physician, the parents of the child, a neonatal-intensive-care-unit review committee, and, in some cases, the courts.

Mr. Weir has written a book that deserves to become a standard text in the continuing debate on infanticide. However, this reviewer ultimately disagrees with the assumption that one person can ever decide that another human being would be better off dead. Once the sanctity of life is lost we find ourselves on a very slippery slope, exposed, as Jacques Maritain said, "to the mercy of all the devouring forces which threaten the life of the soul, exposed to relentless actions and reactions of conflicting interests and appetites."