Appendix C to Part 84 - Guidelines Relating to Health Care for Handicapped Infants
45:1.0.1.1.43.9.47.1.25 : Appendix C
Appendix C to Part 84 - Guidelines Relating to Health Care for
Handicapped Infants
(a) Interpretative guidelines relating to the applicability
of this part to health care for handicapped infants. The
following are interpretative guidelines of the Department set forth
here to assist recipients and the public in understanding the
Department's interpretation of section 504 and the regulations
contained in this part as applied to matters concerning health care
for handicapped infants. These interpretative guidelines are
illustrative; they do not independently establish rules of
conduct.
(1) With respect to programs and activities receiving Federal
financial assistance, health care providers may not, solely on the
basis of present or anticipated physical or mental impairments of
an infant, withhold treatment or nourishment from the infant who,
in spite of such impairments, will medically benefit from the
treatment or nourishment.
(2) Futile treatment or treatment that will do no more than
temporarily prolong the act of dying of a terminally ill infant is
not considered treatment that will medically benefit the
infant.
(3) In determining whether certain possible treatments will be
medically beneficial to an infant, reasonable medical judgments in
selecting among alternative courses of treatment will be
respected.
(4) Section 504 and the provisions of this part are not
applicable to parents (who are not recipients of Federal financial
assistance). However, each recipient health care provider must in
all aspects of its health care programs receiving Federal financial
assistance provide health care and related services in a manner
consistent with the requirements of section 504 and this part. Such
aspects includes decisions on whether to report, as required by
State law or otherwise, to the appropriate child protective
services agency a suspected instance of medical neglect of a child,
or to take other action to seek review or parental decisions to
withhold consent for medically indicated treatment. Whenever
parents make a decision to withhold consent for medically
beneficial treatment or nourishment, such recipient providers may
not, solely on the basis of the infant's present or anticipated
future mental or physical impairments, fail to follow applicable
procedures on reporting such incidents to the child protective
services agency or to seek judicial review.
(5) The following are examples of applying these interpretative
guidelines. These examples are stated in the context of decisions
made by recipient health care providers. Were these decisions made
by parents, the guideline stated in section (a)(4) would apply.
These examples assume no facts or complications other than those
stated. Because every case must be examined on its individual
facts, these are merely illustrative examples to assist in
understanding the framework for applying the nondiscrimination
requirements of section 504 and this part.
(i) Withholding of medically beneficial surgery to correct an
intestinal obstruction in an infant with Down's Syndrome when the
withholding is based upon the anticipated future mental retardation
of the infant and there are no medical contraindications to the
surgery that would otherwise justify withholding the surgery would
constitute a discriminatory act, violative of section 504.
(ii) Withholding of treatment for medically correctable physical
anomalies in children born with spina bifida when such denial is
based on anticipated mental impairment paralysis or incontinence of
the infant, rather than on reasonable medical judgments that
treatment would be futile, too unlikely of success given
complications in the particular case, or otherwise not of medical
benefit to the infant, would constitute a discriminatory act,
violative of section 504.
(iii) Withholding of medical treatment for an infant born with
anencephaly, who will inevitably die within a short period of time,
would not constitute a discriminatory act because the treatment
would be futile and do no more than temporarily prolong the act of
dying.
(iv) Withholding of certain potential treatments from a severely
premature and low birth weight infant on the grounds of reasonable
medical judgments concerning the improbability of success or risks
of potential harm to the infant would not violate section 504.
(b) Guidelines for HHS investigations relating to health care
for handicapped infants. The following are guidelines of the
Department in conducting investigations relating to health care for
handicapped infants. They are set forth here to assist recipients
and the public in understanding applicable investigative
procedures. These guidelines do not establish rules of conduct,
create or affect legally enforceable rights of any person, or
modify existing rights, authorities or responsibilities pursuant to
this part. These guidelines reflect the Department's recognition of
the special circumstances presented in connection with complaints
of suspected life-threatening noncompliance with this part
involving health care for handicapped infants. These guidelines do
not apply to other investigations pursuant to this part, or other
civil rights statutes and rules. Deviations from these guidelines
may occur when, in the judgment of the responsible Department
official, other action is necessary to protect the life or health
of a handicapped infant.
(1) Unless impracticable, whenever the Department receives a
complaint of suspected life-threatening noncompliance with this
part in connection with health care for a handicapped infant in a
program or activity receiving Federal financial assistance, HHS
will immediately conduct a preliminary inquiry into the matter by
initiating telephone contact with the recipient hospital to obtain
information relating to the condition and treatment of the infant
who is the subject of the complaint. The preliminary inquiry, which
may include additional contact with the complainant and a
requirement that pertinent records be provided to the Department,
will generally be completed within 24 hours (or sooner if
indicated) after receipt of the complaint.
(2) Unless impracticable, whenever a recipient hospital has an
Infant Care Review Committee, established and operated
substantially in accordance with the provisions of 45 CFR 84.55(f),
the Department will, as part of its preliminary inquiry, solicit
the information available to, and the analysis and recommendations
of, the ICRC. Unless, in the judgment of the responsible Department
official, other action is necessary to protect the life or health
of a handicapped infant, prior to initiating an on-site
investigation, the Department will await receipt of this
information from the ICRC for 24 hours (or less if indicated) after
receipt of the complaint. The Department may require a subsequent
written report of the ICRC's findings, accompanied by pertinent
records and documentation.
(3) On the basis of the information obtained during preliminary
inquiry, including information provided by the hospital (including
the hospital's ICRC, if any), information provided by the
complainant, and all other information obtained, the Department
will determine whether there is a need for an on-site investigation
of the complaint. Whenever the Department determines that doubt
remains that the recipient hospital or some other recipient is in
compliance with this part or additional documentation is desired to
substantiate a conclusion, the Department will initiate an on-site
investigation or take some other appropriate action. Unless
impracticable, prior to initiating an on-site investigation, the
Department's medical consultant (referred to in paragraph 6) will
contact the hospital's ICRC or appropriate medical personnel of the
recipient hospital.
(4) In conducting on-site investigations, when a recipient
hospital has an ICRC established and operated substantially in
accordance with the provisions of 45 CFR 84.55(f), the
investigation will begin with, or include at the earliest
practicable time, a meeting with the ICRC or its designees. In all
on-site investigations, the Department will make every effort to
minimize any potential inconvenience or disruption, accommodate the
schedules of health care professionals and avoid making medical
records unavailable. The Department will also seek to coordinate
its investigation with any related investigations by the state
child protective services agency so as to minimize potential
disruption.
(5) It is the policy of the Department to make no comment to the
public or media regarding the substance of a pending preliminary
inquiry or investigation.
(6) The Department will obtain the assistance of a qualified
medical consultant to evaluate the medical information (including
medical records) obtained in the course of a preliminary inquiry or
investigation. The name, title and telephone number of the
Department's medical consultant will be made available to the
recipient hospital. The Department's medical consultant will, if
appropriate, contact medical personnel of the recipient hospital in
connection with the preliminary inquiry, investigation or medical
consultant's evaluation. To the extent practicable, the medical
consultant will be a specialist with respect to the condition of
the infant who is the subject of the preliminary inquiry or
investigation. The medical consultant may be an employee of the
Department or another person who has agreed to serve, with or
without compensation, in that capacity.
(7) The Department will advise the recipient hospital of its
conclusions as soon as possible following the completion of a
preliminary inquiry or investigation. Whenever final administrative
findings following an investigation of a complaint of suspected
life-threatening noncompliance cannot be made promptly, the
Department will seek to notify the recipient and the complainant of
the Department's decision on whether the matter will be immediately
referred to the Department of Justice pursuant to 45 CFR 80.8.
(8) Except as necessary to determine or effect compliance, the
Department will (i) in conducting preliminary inquiries and
investigations, permit information provided by the recipient
hospital to the Department to be furnished without names or other
identifying information relating to the infant and the infant's
family; and (ii) to the extent permitted by law, safeguard the
confidentiality of information obtained.
[49 FR 1653, Jan. 12, 1984]