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AMERICAN ACADEMY OF PEDIATRICS v. HECKLER

April 14, 1983

AMERICAN ACADEMY OF PEDIATRICS, NATIONAL ASSOCIATION OF CHILDREN's HOSPITALS AND RELATED INSTITUTIONS, CHILDREN's HOSPITAL NATIONAL MEDICAL CENTER, Plaintiffs,
v.
MARGARET M. HECKLER, Secretary, Department of Health and Human Services, Defendant



The opinion of the court was delivered by: GESELL

 Background

 This case touches upon one of the most difficult and sensitive medical and ethical problems facing our society -- the question of what sort of life-sustaining medical treatment, if any, should be utilized to preserve the lives of severely mentally or physically defective newborn infants. Sometimes surgery or other life-sustaining treatment allows an otherwise seriously ill infant to attain complete health and develop normally. Frequently, however, correction of a life-threatening physical defect or use of heroic life-sustaining measures preserves the life of an infant who continues nevertheless to suffer from mental or physical defects so great as seriously to impair the infant's expected quality of life and chances for an independent existence. *fn2"

 Some physicians apply all available life-sustaining techniques in these cases, even where the infant's death due to a severe defect is certain. However, traditionally many attending physicians confronted with a severely defective newborn may, after medical consultation and discussion with family members, agree not to undertake corrective surgery or other life-sustaining measures. The decision to forgo life-preserving measures in these desperate cases is complex and may involve a number of potentially conflicting ethical concerns. In some instances parents and physicians deciding upon a course of medical treatment may, among other factors, consider the risks of treatment; the quality of life the infant will enjoy if it survives; the utility of further life-sustaining measures in the face of a prognosis that certain death will occur in weeks or months; and the impact of a severely mentally or physically defective child upon the parents' marriage, other siblings, and the family's financial resources.

 Traditionally, the difficult decision of when to withhold life-sustaining treatment of a defective newborn has been one made within the privacy of the physician-patient relationship, without interference by state or federal authorities. Physicians, after counseling parents on options affecting prognosis and treatment, frequently give great deference to the wishes of the parents who are considered guardians of the best interests of the child. There may be a joint decision that life-sustaining measures should be withheld. However, in other situations physicians may proceed contrary to parental instructions and perhaps even seek court intervention on the child's behalf. There is evidence that the medical judgments being reached are not always free of error, particularly in borderline cases and where parental decisions may reflect primarily economic and familial considerations which some find wholly irrelevant.

 The problem of serious illness or birth defect in newborn infants is, of course, not a new one. But dramatic advances in neonatal care have made it now possible to sustain some form of life in many infants who decades or even years ago usually died shortly after birth. Moreover, recent publicity surrounding certain cases where parents or physicians have determined not to undertake life-sustaining treatment of defective but possibly salvageable newborns has focused public debate on this delicate and sensitive issue.

 Not surprisingly there is heated controversy as to how best to determine the appropriate course of medical care for these infants. These concerns appear to have been sparked by the "Baby Doe" case in Bloomington, Indiana. Baby Doe was born April 9, 1982, afflicted with Down's syndrome (mongolism) and a surgically correctable blockage of his digestive tract which precluded normal feeding. His parents refused to consent to surgery and the hospital turned to the state courts for guidance. Despite appointment of a guardian ad litem and several attempts at appeal, no judicial intervention occurred and the infant died six days later.

 This case was widely publicized and evoked much public discussion. President Reagan sent a memorandum to the Attorney General and the then-Secretary of Health and Human Services (HHS) dated April 30, 1982, citing the "Baby Doe" case and noting that federal law prohibits discrimination against the handicapped. In response, the Secretary issued a May 18, 1982 "notice" to health care providers "to remind affected parties of the applicability of section 504 of the Rehabilitation Act of 1973." 47 Fed. Reg. 26027 (June 16, 1982). That notice stated that section 504 made it unlawful for hospitals receiving federal financial assistance to withhold nutrition or medical or surgical treatment from handicapped infants if required to correct a life-threatening condition. The notice went on to recognize that recipients of federal financial assistance do not have complete control over treatment, especially where parental wishes are otherwise, but suggested that parental withholding of consent for treatment should not be aided by allowing the infant to remain in the receiving institution, and that failure to comply with section 504 subjected recipients "to possible termination of Federal assistance." Id.

 Nearly a year later, on March 7, 1983, a newly-appointed Secretary published the regulation at issue in this case. 48 Fed. Reg. 9630.

 The Challenged Regulation

 The regulation issued by the Secretary is novel and far-reaching. It has provoked strong responses, both favorable and unfavorable, from those sections of the community concerned with the medical care of newborn infants or the civil rights of the handicapped. *fn3" Like the notice of May 18, the regulation was also promulgated under section 504 of the Rehabilitation Act of 1973, which provides that

 
no otherwise qualified handicapped individual in the United States . . . shall, solely by reason of his handicap, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance. . . . 29 U.S.C. ยง 794.

 Invoking this authority, the Secretary for the first time undertook actively to oversee the medical treatment of severely defective newborn infants and to safeguard their lives, acting as what counsel for defendant characterized "the protector of last resort."

 The "interim final rule" became effective March 22, 1983. It requires hospitals and other medical institutions receiving federal financial assistance to post permanently "in a conspicuous place in each delivery ward, each maternity ward, each pediatric ward, and each nursery, including each intensive care nursery," the following sign:

 
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 ...

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