The Reagan administration has issued an executive order requiring placement of a prominent sign in every delivery room and nursery stating that it is a federal offense to withhold food or ordinary medical care from infants on the basis of their handicaps. Also displayed on the sign will be a toll-free hot- line number that anyone suspecting a violation may use to report to Washington anonymously, causing an immediate investigation by the federal government.
The hospital is held responsible for the actions of each of its doctors, and the penalty for violation is loss of all federal funds, including Medicaid, Medicare and federal grants. In today's situation of increasing costs and curtailed resources, this is capital punishment for the institution, amounting to bankruptcy.
This seemingly harmless, well-meaning decree presents serious problems in four major areas:
First, the federal government proposes to intervene directly in the practice of medicine, countermanding the decisions of doctors and families and even when necessary overriding the actions of state courts. The basic reference point will be the personal moral views of the president and his administration. The legislative basis for this executive action is a law intended to protect the rights of handicapped children to rehabilitative services in the schools.
Second, the terms "handicap" and "customary medical care" are broad and unspecific. If handicap is construed to include extreme conditions such as massive cerebral hemorrhage, anencephaly and even brain death, the discretion taken away from doctors and families as to how far to continue with massive life-support systems is disastrous. Potential exists in this rule for indefinite prolongation of futile life support with attendant pain and suffering of the family, misuse of scarce and vital medical resources and enormous expense to the community. It is not reassuring that decisions in these highly personal and highly technical matters will be made according to the guidelines of federal bureaucrats.
Likewise, "customary medical care" is so open-ended that its interpretation is crucial to the effect of this executive order. If the interpretation is limited to those means of care intended to support the comfort and well-being of the infant, few would quarrel with the ruling. But if it includes all medical, surgical and life support maneuvers that are technically possible regardless of prognosis and likelihood of success, then those of us who give intensive care to newborns have been rendered blind technicians, robbed of our faculties of judgment. Again, I doubt if the federal bureaucracy can do this scientific and humanistic work as well as can I and my colleagues, whose life work it is.
Third, there is the problem of the enforcement mechanism. Of course, delicate medical and ethical decisions, to be faced jointly by parents and their doctors, occur in every delivery room and nursery. But to be reminded by prominently displayed signs that violations of federal law may be going on, with the suggestion that families should be constantly alert for possible criminal behavior, and with even anonymous bystanders encouraged to make judgments and call the hot-line if they have any doubts--this seems like unnecessary roughness. Both physician and parent are put on notice that Big Brother is watching them. I cannot believe it is comforting for the parents of a desperately ill baby.
Fourth, this ruling is inconsistent with the other policies of this administration concerning handicapped children. If life is to be given reverence regardless of quality and if care is to be continued regardless of prognosis, then great demands are inevitably created for resources to support prolonged hospitalization and the aftercare of handicapped children. Yet in the interest of reducing the federal deficit and making funds available for military buildup, the Reagan administration has drastically cut funds for crippled children. Most states are so short of federal Medicaid funds that they will pay for no hospitalization longer than 20 days, regardless of diagnosis. Hospitals may become so terrified of losing federal funds that they place stultifying restrictions on their medical staffs.
Worse yet, families required to bear the burden of the administration's intervention in medical and family decision-making are left helpless and unsupported, with a lifetime of misery and debts ahead of them and precious little assistance from the community. To be morally valid, reverence for life must be lifelong.