"Guidelines Applicable to Health Care and Child Protective Services for Infants with Life-Threatening Congenital Impairments
Pursuant to Section 504 of the Rehabilitation Act of 1973 and the Child Abuse Prevention and Treatment Act" (draft)
In response to the "Baby Doe" controversy triggered by the deliberate withholding of medical treatment from a severely
disabled newborn in an Indiana hospital, and his resulting death, the Department of Health and Human Services proposed new
guidelines for health care providers in order to prevent further deaths of this kind. The guidelines, which went through
several revisions, were controversial among department officials because they limited the professional autonomy of physicians
to make decisions about treatment. They were eventually struck down by the courts for the same reason. As a long-time surgeon
but also a firm believer in the medical rights of disabled newborns, Koop supported the guidelines only reluctantly, fearing
at the same time that they intruded too far into the relationship between physicians and parents and lacked the moral authority
of law. For Koop, resolving the controversy over the rights of physicians and parents to determine the fate of disabled newborns
required that physicians undergo continuing medical education in the latest surgical techniques to correct birth defects.
Above all, it required ongoing moral self-examination among health care providers, which Koop considered too often missing
in contemporary medicine.
NOTE: In the original document, page 4 is repeated, once with handwritten notes, and once without.
Item is a photocopy.
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United States Department of Health and Human Services
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Medical Subject Headings (MeSH):
Refusal to Treat
Congenital Birth Defects and the Medical Rights of Children: The "Baby Doe" Controversy
Memorandum from John A. Casciotti, United States Department of Health and Human Services to C. Everett Koop [on proposed "Infant
Doe" guidelines] (November 15, 1982)
Memorandum from Juan A. del Real to the Secretary of the United States Department of Health and Human Services [on proposed
"Infant Doe" guidelines] (Draft) [November 1982]
Notice to Health Care Providers [on] Discriminating against the Handicapped by Withholding Treatment or Nourishment (May 18,