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)
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del Real, Juan A.
United States Department of Health and Human Services. Office of the Secretary
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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)
"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
Notice to Health Care Providers [on] Discriminating against the Handicapped by Withholding Treatment or Nourishment (May 18,
What action should the Department take to more effectively deal
with Infant Doe cases?
This memorandum proposes the issuance of guidelines designed to focus primary responsibilities on State child abuse and neglect
agencies for the protection of Infant Does. The primary thesis of the guidelines is to strengthen the bridge between physician-parent
deliberations regarding medical treatment and existing
State legal and administrative structures for the protection of children. The guidelines would:
1. give notice that HHS interprets existing Section 504 regulations to require health care providers to report to the State
child abuse agency suspected cases of unjustified withholding by parents of available life-sustaining medical treatment to
infants with life-threatening congenital impairments; and
2. give notice to State child abuse agencies that HHS interprets existing section 504 and Child Abuse and Neglect regulations
to require effective action to
protect Infant Does.
The guidelines would be published in the Federal Register, and public comment should be solicited.
On May 18, 1982, in response to instructions from the President to the Secretary, Betty Lou Dotson issued a Notice to Health
Care Providers reminding them of the applicability of Section 504 of the Rehabilitation Act of 1973 to Infant Doe cases.
The Notice was limited to Section 504 responsibilities of health care providers which receive Federal financial assistance,
and did not deal very specifically with the complications involved when parents withhold consent for medical treatment of
an Infant Doe. These guidelines would be an effort to deal with those complications.
Discussion of Significant Issues
1. Guidelines versus regulation.
For several reasons, this memorandum recommends issuance of guidelines rather than regulations. First, guidelines, unlike
regulations, do not need the approval of the Justice Department and OMB, thus avoiding what in a number of instances has
proven to be a very lenghty and cumbersome process. Second, guidelines provide greater flexibility to the Department to adjust
to unanticipated circumstances in an area with which we have had little experience. Third, because nothing in the
guidelines is not supportable on the basis of existing regulations, issuing the substance of the guidelines as a new regulation
is not necessary.
2. Responsibility to provide medical care.
The guidelines seek to establish a standard for when medical care must be provided to an infant with a life threatening congenital
impairment. That standard is embodied in both the section 504 responsibilities of health care providers and child abuse agencies
that receive Federal funding and in the responsibilities of parents under child abuse and neglect laws. In cases where the
withholding of treatment is by a health care facility and does not involve parental withholding of consent, the focus is on
the hospital's section 504 responsibilities. Where the withholding is based on a lack of parental authorization for the
treatment, the focus shifts to the State agency's responsibilities under both section 504 and the Federal child abuse
and neglect program regulations. The "shifting" mechanism is the responsibility of hospitals under section 504 to
report such cases to the State agency.
The substance of the standard for when medical treatrnent must be provided is whether it will benefit the infant. The guidelines
set forth four situations where the infant will not be considered able to benefit: 1) imminent death regardless of the treatment;
2) undue risk of death or worsening the condition; 3) best prognosis for treatment is for noncognitive existence; and 4) best
prognosis is very short life with
extreme pain and suffering.
3. Responsibilities of health care providers.
The guidelines repeat the points made in the May 18 Notice regarding not encouraging parents to discriminatorily withhold
consent for treatment and the responsibility of the hospital concerning physicians with staff privileges. The important new
element is the responsibility of providers to report Infant Doe cases to the State child abuse and neglect agency. This responsibility
is within the existing regulatory requirement that recipients of Federal funding not aid or perpetuate the discriminatory
action of another person. The analysis is that it aids and perpetuates the discriminatory action of the parents for the hospital
to rest upon State law requirements regarding parental consent and fail to undertake the simple, burdenless act of accessing
the system provided by State law to overcome wrongful parental actions. The notion of hospitals reporting to the appropriate
agency suspected cases of child abuse and neglect is not at all new. In fact, all States now require physicians to make such
reports (although it is not clear whether current practice by hospitals and agencies uniformly considers Infant Does to be
In addition, the guidelines do not repeat the suggestion contained in the May 18 Notice regarding the discharge of the infant.
Rather, the guidelines state a hospital's responsibility to report suspected Infant Doe cases is not relieved by the discharge
of the infant.
4. Responsibilities of State child abuse and neglect agencies.
Although the Office of Human Development Services does not have precise data, it appears that all State child abuse and neglect
programs receive Federal funding from HHS under either the child abuse and neglect program or the child welfare services program.
These agencies therefore have responsibilities under both section 504 and the program regulations. The guidelines refer to
both sets of responsibilities in stating that these agencies may not discriminatorily fail to take action on behalf of Infant
Does, and they must, pursuant to programmatic responsibilities, consider the failure to provide adequate medical care to Infant
Does to constitute medical neglect. These responsibilities are not out of line with existing State agency authorities. Presently,
38 States specifically refer to medical neglect in their child abuse and neglect laws, and all of the others have statutory
language apparently broad enough to include medical neglect. No State child abuse and neglect statute appears to have language
restricting jurisdiction in Infant Does cases.
The Department should issue the guidelines described above, and should solicit comment on them.