The Hardest Choice

In Baltimore three years ago, the parents of a newborn Mongoloid baby refused to allow an operation to correct a fatal defect in the infant's digestive tract. Despite pressure from doctors and hospital personnel, they refused to change their minds, and the child slowly starved to death.

In Portland, Me., last month, when parents made a similar decision about their severely deformed infant, hospital officials asked a court to decide. A judge, holding that the baby had a right to live, issued an order that allowed doctors to operate on the child. Despite the surgery, the infant died 15 days after birth.

These cases illustrate a vexing dilemma now confronting modern medicine: Should lives of retarded infants or those with multiple birth defects be prolonged--at great cost in manpower, money and anguish--especially if the life that is preserved will almost certainly be one of pain or merely vegetable-like existence?

Doctors have long withheld lifesaving medical support from grossly malformed infants, allowing them to die at birth and often only telling the parents that their babies were stillborn. But public discussion of this unpleasant alternative is a relatively new phenomenon. Doctors and hospital officials across the U.S. are now openly acknowledging that there are cases in which all concerned agree that the best--and perhaps even the most humane--treatment for a severely deformed infant is none at all.

The main factor behind this change is not indifference to life but rather a new concern for what has come to be called the quality of life. Many doctors, clergymen and parents no longer believe that it is enough to enable a badly deformed child to survive. They hold that an infant is entitled to a reasonable chance of achieving what Professor Joseph Fletcher, who teaches medical ethics at the University of Virginia Medical School, calls humanhood, a state that includes "self-awareness, a sense of futurity, an ability to relate to others."

Few, if any, doctors are willing to establish guidelines for determining which babies should receive lifesaving surgery or treatment and which should not. But many recognize that there are cases, particularly those involving multiple anomalies, when a hands-off attitude is probably for the best. Says Dr. Joan Hodgman, professor of pediatrics at the University of Southern California School of Medicine: "If we have a baby that I know is malformed beyond hope, I make no attempt to preserve life."

Time of Need. Other doctors, too, are speaking out on the subject. Drs. Raymond Duff and A.G.M. Campbell reported in the New England Journal of Medicine on a study of 299 deaths among 2,171 children treated in the special-care nursery at Yale-New Haven Hospital over a 2 1/2-year period. They found that 43 of the infants died after parents and doctors decided jointly to discontinue treatment. The other 256, who received the best treatment modern medicine could provide, fared no better; few lived longer than the infants who received no special care. Furthermore, their short existence in many cases bore little relation to human life. One infant, who could not breathe on his own, was kept alive for five months as a virtual extension of a mechanical respirator.

Duff and Campbell believe that in such cases doctors must at least consider whether or not their efforts are in the infant's best interests. "Pretending there is no decision to be made is an arbitrary and potentially devastating decision by default," they write. "It may constitute a victimizing abandonment of patients and their families in times of greatest need."

Not all doctors agree. Some feel that they are bound by the Hippocratic oath to do all they can to preserve life. Others, aware that an incurable condition today may be a manageable one tomorrow, fear making the wrong decision. "No matter how expert we are, we can't predict outcome," says Dr. Judah Folkman, surgeon in chief at Children's Hospital Medical Center in Boston.

Painful Decision. The courts have provided little guidance in the issue. Judges have overruled parents and ordered such lifesaving measures as blood transfusions or surgery in cases involving older children with life-threatening illnesses. But they have yet to rule definitively on the question of withholding treatment from the grossly malformed newborn; no legal action has yet been brought against a parent for refusing to authorize such treatment.

As a result, the painful decision to treat or not to treat a deformed infant rests squarely on the shoulders of the parents and their physicians. To help parents make their decision, doctors in major hospitals now meet with parents of a deformed baby as soon as possible after deli very, explain the nature of the child's problems, and outline the steps that must be taken if life is to be preserved. They also try to provide an honest evaluation of the kind of life their efforts may succeed in preserving. Despite the shock and disappointment of having a deformed child, most parents automatically opt for life and urge doctors to do whatever they can to maintain it. This may change with the more open debate on whether allowing a baby to die is preferable to dooming it to an inhumanly handicapped existence.

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