Loma Linda hospital is in the news again. Two years ago, it was for going too far -- implanting a baboon heart in a dying Baby Fae. This year, for not going far enough: for refusing, initially, to seek a (human) heart to transplant into Baby Jesse, dying from the same heart anomaly that killed Baby Fae.
Why the refusal? According to the parents, because they are unmarried. This story was soon amplified in the press. Good angle: Moral Disapproval of Parents' Life Style Leads to Death Sentence for Tot.
Wrong angle. True, Loma Linda's decision did center on the parents. Not their flouting convention, however, but the stability of their relationship and their commitment to the child. Loma Linda has eight criteria a patient must meet to be eligible for transplant. No. 8 is "ability of parents to understand and follow a complex treatment program." The doctors figured that a 17-year-old unwed mother would not be able to give the excruciatingly demanding care a post-transplant infant needs.
The doctors figured wrong. Baby Jesse's mother and father went to their priest, lobbied the hospital and enlisted the media to reverse the decision. That kind of effort is itself good evidence that the hospital misjudged the parents. Indeed, Loma Linda did reverse itself (the legal device was to give custody of the child to the grandparents) and within days transplanted a heart into Baby Jesse.
Misjudging a set of parents is one thing. But should the life of an innocent baby ever hinge on its parents' life style? The offense people felt about the Baby Jesse case came not from the misapplication of rule 8 but from the rule itself.
The offense might be greater if it were widely known that, in fact, all transplant programs in the country have criteria for deciding who lives and who dies. And, notes Dr. Arthur Caplan of the Hastings Institute on medical ethics, practically everyone includes "psychosocial" factors, such as the family's ability to care for the patient.
This is not as unreasonable as it seems. Unless the state is willing to take full responsibility for a patient, the "life style" rule can be important in protecting a child, by ensuring that in the end it is not made to suffer unnecessarily. In such exotic procedures as heart transplants, the quality of after-care is as important to survival as the skill of the surgeon. Even with the best care, things can go horribly wrong. With inadequate care they almost certainly will.
There are fates worse than death, and slow, miserable death -- the kind Barney Clark and other brave artificial heart volunteers have suffered -- is one of them. Conditions necessary to prevent that fate (including competent parents) are reasonable conditions for transplant.
But there are other selection criteria that have little to do with averting suffering or ensuring survival of the patient. The real offense is not Loma Linda's criterion No. 8. It is criterion No. 5: "normal neurological evaluation." Under this rule, mild retardation or even, say, a hearing defect can mean a death sentence. Neurological normality does not necessarily reflect the baby's chances for survival. It is, instead, a quality-of-life judgment.
Quality of life has long been used in deciding who gets scarce, life-giving treatment. In the early days of kidney dialysis, you needed a briefcase, a bank account and maybe a (dependent) baby to get dialysis. In the '60s, the average kidney dialysis patient was 30-45, white, working and head of household (i.e., mostly male). This kind of triage caused quite a fuss. It erupted with particular virulence at the Seattle Artificial Kidney Center over the "God squads" that reviewed candidates for the few available kidney dialysis machines. The Pacific Northwest, went the saying at the time, was no place for a Thoreau to go into kidney failure.
The Thoreau problem was finally cured by the federal government. It solved the problem by solving the scarcity: the government decided to pay for kidney dialysis for all. At a cost of over $2 billion annually, today there is no involuntary triage for kidney dialysis.
If you want it, you get it. Not so with transplants. That scarcity problem cannot be cured with money alone. Money can't buy hearts. Transplants must still be governed by lifeboat ethics. Yet even a lifeboat has rules. Lifeboat ethics might justify throwing someone overboard if he cannot be adequately cared for and will suffer a lingering death. It does not justify throwing him overboard because he flunks a neurological exam. When A and B have equal survival chances, the only just way to choose between them, in transplants as on the lifeboat, is by lottery, not by looks.
As long as hearts are scarce, there will be no getting around having to play God in the nursery. But if we must, at least let us, as philosopher Paul Ramsey once put it, "play God as God plays God."
For all the fuss, the real problem is not a rule concerning the "ability of parents to understand and follow a complex treatment program." A baby who has a transplant will need that. The real problem is the rule to save babies that are neurologically perfect -- and rules like it across the country that make aesthetics a criterion for saving the lives of critically ill, neurologically impaired "Baby Doe" newborns.
The real ethical scandal is not what might have happened to Baby Jesse, but what happens daily to Baby Does. Society prefers neurological perfection. But a baby can live without it. Unless, that is, we let the baby die first.