Notice to Health Care Providers [on] Discriminating against the Handicapped by Withholding Treatment or Nourishment
In its initial response to the "Baby Doe" controversy triggered by the withholding of medical treatment from a severely
disabled newborn in an Indiana hospital, and his resulting death, the Department of Health and Human Services warned that
it would use existing legislation, namely the Rehabilitation Act of 1973, to prevent further deaths of this kind. Section
504 of the act prohibited as discriminatory the withholding of services, including medical services, from any person with
a disability in facilities that received federal funding, among them hospitals. However, officials at the department, most
of whom regarded themselves as allies of hospitals and of the medical profession, were deeply divided over the issue of intervening
in the professional autonomy of physicians in making treatment decisions. As a result of such internal political and ethical
conflicts, the department failed to bring any legal actions under the Rehabilitation Act against physicians who counseled
parents to allow their disabled children to die, and new legislation had to be drafted to address the issue. In October 1984,
federal child abuse was expanded to explicitly prohibit the withholding of fluids, nutrition, and medically indicated treatment
from infants with severe birth defects.
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1982-05-18 (May 18, 1982)
Dotson, Betty Lou
United States Department of Health and Human Services. Office for Civil Rights
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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]
"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) [November
Subject: Discriminating Against the Handicapped by Withholding Treatment or Nourishment
There has recently been heightened public concern about the adequacy of medical treatment of newborn infants with birth defects.
Reports suggest that operable defects have sometimes not been treated, and instead infants have been allowed to die, because
of the existence of a concurrent handicap, such as Down's Syndrome.
This notice is intended to remind affected parties of the applicability of Section 504 of the Rehabilitation Act of 1973 (29
U.S.C. 794). 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 . . . . " Implementing regulations issued by the Department
of Health and Human Services make clear that this statutory prohibition applies in the provision of health services (45 C.F.R.
84.52) and that conditions such as Down's syndrome are handicaps within the meaning of section 504 (45 C.F.R. 84.3(j)).
Under section 504 it is unlawful for a recipient of Federal financial assistance to withhold from a handicapped infant nutritional
sustenance or medical or surgical treatment required to correct a life-threatening condition, if:
(1) the withholding is based on the fact that the infant is handicapped; and
(2) the handicap does not render the treatment or nutritional sustenance medically contraindicated.
For example, a recipient may not lawfully decline to treat an operable life-threatening condition in an infant, or refrain
from feeding the infant, simply because the infant is believed to be mentally retarded.
We recognize that recipients of Federal financial assistance may not have full control over the treatment of handicapped patients
when, for instance, parental consent has been refused. Nevertheless, a recipient may not aid or perpetuate discrimination
by significantly assisting the discriminatory actions of another person or organization. 45 C.F.R. 84.4(b)(l)(v). Recipients
must accordingly insure that they do not violate section 504 by facilitating discriminatory conduct.
In fulfilling its responsibilities, a Federally assisted health care provider should review its conduct in the following areas
to insure that it is not engaging in or facilitating discriminatory practices:
- Counseling of parents should not discriminate by encouraging parents to make decisions which, if made by the health care
provider, would be discriminatory under section 504.
- Health care providers should not aid a decision by the infant's parents or guardian to withhold treatment or nourishment
discriminatorily by allowing the infant to remain in the institution.
- Health care providers are responsible for the conduct of physicians with respect to cases administered through their facilities.
The failure of a recipient of Federal financial assistance to comply with the requirements of section 504 subjects that recipient
to possible termination of Federal assistance. Moreover, section 504 does not limit the continued enforcement of State laws
prohibiting the neglect of children, requiring medical treatment, or imposing similar responsibilities.