THE

CHILDREN'S

HOSPITAL

OF
PHILADELPHIA


FOUNDED 1855

April 21, 1983

ONE CHILDREN'S CENTER
34th STREET AND
CIVIC CENTER BOULEVARD
PHILADELPHIA, PA. 19104
(215) 596-9100

C. Everett Koop, M.D.
United States Surgeon General
Department of Health and Human Services
Washington, D.C.

Dear Doctor Koop:

  A number of residents at The Children's Hospital of Philadelphia have
found it imperative that we, as a group, express our disagreement with the
Interim Final rule "Nondiscrimination on the Basis of Handicap" and applaud-    ."
its overturning on April 14 by U.S. District Judge Gerhardt Gesell.  We oppose
the posting of the notice:  "Discriminatory failure to feed and care for
ib$i.capped Infants in this facility is prohibited by federal law" and especially
we.oppose the establishment of a hotline which, according to the ruling, is to
be used thus:  "Any person having knowledge that a handicapped infant is bei,ng
discr.imLnatorily denied food or customary medical care should immediately contact:
                                    -.--i-_ -- ---
Handicapped Infant Hotline."

  This rule has also failed to define what is meant by "customary care." As
stated by ihe American Academy of Pediatrics, "As new medical findings are reported,.
new equipment added, and additional experience gained, standards of care are
modified rapidiy an.d frequently.  There are also legitimately differing views of
the appropriate treatment for the same conditions,"  Technology bears with it its
responsibilities, including the need for the continue d dignity of the dying child
and his famiiy.  The issue, in our experience at Children's has never involved the
decision as to whether to support an otherwise stable handicapped child, but rather
the long, thoughtful decision made jointly by physicians, nurses, parents, social
workers and at times clergy, of when not to prclong the life of a desperately ill
child with little chance of leading anything close to a normal life.  We would welcome
the f,?rnmation of a formal b-ioethical committee which, as proposed by the American
Acac!~zmy of Pediatrics, would provide a "more rcas:,ned step-wise course" and guidelines
for Lhe IIl.rmorie resolut.ion of "ethically complex s.i.tuat<.ons."

Children's Hospital is an equal opportunity empl'oyer and patients are accepted without regard to race. creed, color, national origin or sex


  We find it ironic that this ruling should he implemented at the precise
time of flagrant federal budget cutbacks affecting the poor and handicapped,
paralleled by rising infant mortality.  This is exemplified by the 1982
budget changes whereby the school breakfast program was cut by 20X, the school
lunch program by 30%, the Child Care Food program by 30%, the Special Milk
program by 80%; marked curtailment in the benefits to parents with children on
home ventilators such that this program is in jeopardy of being discontinued,
20% cut in the Sprang's Grant - special project for funding of services to severely
handicapped children, e.g., with spina bifida, craniofacial abnormalities, cleft
palate, and speech and hearing deficits to name only a few.,

  We can only conclude from these actions that the government has taken only a

superficial look at these complex issues and does not have at heart the total care
of these children, i.e., their emotional, medical, nutritional and socioeconomic
needs.

   In short, the issues involved are not black-and-white and cannot be dealt
with by simplistic measures.  We need thoughtful, reasoned and loving approaches
to each individual child's needs.

            Cordially,
Members of The Children's Hospital of Philadelphia

Housestaff