Case: American Hospital Association v. Heckler (later Bowen v. Am. Hosp. Ass'n)

In 1982, a newborn child with Down’s Syndrome in Bloomington, Indiana was denied life-saving surgery to repair a blocked esophagus (unrelated to the child’s disability) after the parents of the child refused to consent to surgery. The child’s death generated such widespread public discussion that the President directed the Department of Health and Human Services’ (HHS) Office of Civil Rights to remind healthcare providers receiving federal funding that Section 504 of the Rehabilitation Act of 1973 (“Section 504”) prohibits discrimination on the basis of disabilities, including Down’s Syndrome, and to review existing regulations. Section 504 provides that “no otherwise qualified handicapped individual…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.” 

On March 7, 1983, HHS promulgated interim rules establishing procedures for how to apply Section 504 in situations where treatment for disabled infants is refused. On April 6, 1983, the American Hospital Association (AHA), the Hospital Association of New York State, and an individual hospital filed suit challenging the March 1983 HHS regulations in the Southern District of New York (SDNY). The district court entered a temporary restraining order (TRO) barring enforcement of the regulations on the same day. The regulations were invalidated on April 14, 1983 by the District Court for the District of Columbia, when District Judge Gesell found that HHS’s decision to waive the public comment period violated the Administrative Procedure Act. American Academy of Pediatrics v. Heckler, 561 F. Supp. 395. Following the district court’s decision, HHS proposed new regulations on July 5, 1983. The new regulations were promulgated on January 12, 1984 after a lengthy public commentary period. 

HHS’s 1984 regulations contained guidelines for healthcare providers receiving federal financial assistance on how to interpret Section 504 when treating a handicapped infant; and procedural measures to implement the interpretation and result in compliance. The four basic principles of the guidelines promulgated by HHS for interpreting Section 504 were: (1) healthcare providers could not withhold treatment or nourishment of an infant with a present or anticipated disability if the infant would benefit from the treatment; (2) treatment that would only postpone the death of a terminally ill infant was not required treatment under Section 504; (3) reasonable medical judgments were to be used to determine whether a treatment would be medically beneficial; and (4) if a parent withheld consent to medically-beneficial treatment, the healthcare provider could not decline to report parental neglect solely because the infant was disabled. The regulations also included provisions targeted at state child protective services to prevent medical neglect of children with disabilities, changes to the complaint-review procedure at HHS, and a requirement that hospitals receiving federal funding provide notice to medical professionals that Section 504 prohibits withholding treatment from infants with disabilities. In addition to mandatory provisions, the 1984 regulations included voluntary guidance for hospitals and child protective services that went unchallenged in court. 

On March 12, 1984, after HHS officially promulgated the 1984 regulations, the AHA and other plaintiffs filed an amended complaint in SDNY against HHS and the agency’s then-Secretary Otis R. Bowen, claiming that the new mandatory regulations went beyond the Secretary of HHS’ authority under Section 504. A second suit was filed by the American Medical Association (AMA) on the same day and the two cases were promptly consolidated, before Judge Charles L. Brieant. The district court held that the regulations were beyond the Secretary’s statutory authority and permanently enjoined the Secretary from implementing the regulations and taking any other action under Section 504 to investigate or regulate treatment decisions involving infants with disabilities in programs receiving federal funding. 585 F.Supp. 541.

In a case with no published opinion except the one-word order “affirmed”, 794 F.2d 676. the Second Circuit Court of Appeals summarily affirmed the district court’s judgment on the basis of precedent set in United States v. University Hospital, 729 F.2d 144, in which the same court, several months earlier, had held that Section 504 was inapplicable to the withholding of medical treatment from disabled infants. In University Hospital, parents of an infant with multiple congenital defects decided to forgo corrective surgery that was likely to prolong the infant’s life but would not mitigate the challenges of living with her disabilities. In an opinion written by Judge George C. Pratt, the Second Circuit held that the infant had been denied care not on the basis of her disability but due to a lack of parental consent, removing the circumstances from the purview of Section 504. 

After the summary affirmance, the United States filed a petition for Supreme Court review, which was granted.

Before the Supreme Court, the case focused on four regulatory features of the 1984 rules: (1) mandating hospitals to provide informational notice of obligations to care for infants with disabilities; (2) requiring recipient state child protective services to establish procedures to ensure that infants with disabilities; (3) immediate access for the HHS to patient records without parent consent when a department official assesses information is necessary to protect the health of an infant with disabilities; and (4) elimination of otherwise applicable requirements of notice to hospitals for access to patient records when an HHS official deems immediate access necessary to protect an infant with disabilities. The government sought to justify federal oversight of care for infants with disabilities on the bases that a hospital’s refusal to provide medical treatment solely because of an infant’s disability constitutes discrimination and that a hospital’s failure to report cases of suspected medical neglect to a child protective services agency also violated Section 504. The Court affirmed the Second Circuit in a 4-1-–3 plurality decision on June 9, 1986. 476 U.S. 610.

Concerns about federalism as applied to administrative law weighed heavily in the plurality’s reasoning. The plurality opinion, written by Justice Stevens, opined that Section 504 did not impose a duty to report instances of medical neglect. The plurality also took issue with the methodology of the reporting obligations, which commanded state agencies to require reports when parents refuse consent to recommended procedures, effectively forcing an allocation of state resources. In addition, the plurality held that HHS failed to provide a sufficient evidentiary basis for agency action, and therefore affirmed the injunction. The absence of an evidentiary basis was especially problematic in the plurality’s view because nothing in the language of Section 504 or the legislative history indicated that Congress intended for federal agencies to be able to impose on treatment duties traditionally allocated to states. 

Chief Justice Burger concurred only in the judgment and Justice Rehnquist did not participate.  The dissent, by Justice White, would have reversed the injunction. 

The injunction thus stayed in place.

More broadly, the Bowen decision set a precedent for parental medical decision making and the limited extent of the government’s ability to intervene in medical care. Some elements of HHS’s 1984 regulations were codified in 1984 through an amendment to the Child Abuse Prevention and Treatment Act of 1974. 42 U.S.C. § 5106 provides for HHS to make spending grants to states that allocate resources to child protective services to investigate and intervene in cases where parents neglect infants with disabilities.