STATEMENT BY
C. EVERETT KOOP, M.D.
SURGEON GENERAL OF THE PUBLIC HEALTH SERVICE
DEPARTMENT OF HEALTH & HUMAN SERVICES

BEFORE THE
SUBCOMMITTEE ON SELECT EDUCATION
. OF THE
COMMITTEE ON EDUCATION & LABOR

   

U.S. BO

SEPTEMBER 16, 1982
MR. CHAIRMAN, my name is C. Everett Koop. I am a physician and the Surgeon
General of the United States Public Health Service. I am here today as the
Surgeon General to speak for the Department of Health and Human Services.
However, for the subject that is before the Committee this morning, I will
also draw upon my personal experiences of 35 years as a pediatric surgeon.
When I began that career there were only a half dozen people in the weeded who
specialized in surgical procedures for infants and young children. Pediatric
surgery has since become an important life-saving specialty in medicine and I
am very proud to have been part of that history and development. When I came
to Washington last year I had been practicing the specialty of pediatric

surgery longer than anyone in North America.

Before I continue, Mr. Chairman, may I introduce to the Committee my
colleague, Ms. Betty Lou Dotson, who is Director of the Office of Civil Rights
of the Department of Health and Human Services. The two of us look forward to
discussing with you and this Committee some of the many issues surrounding the
issue of care for the newborn child with handicaps or operable defects.

The subject of this hearing is taken from the title of a piece of proposed
legislation called "On Withholding Treatment from Infants with Handicaps and
Other Operable Defects." I hope that as we proceed this morning,

Mr. Chairman, we may be able to move away from the negative viewpoint of that
title and pay more attention to the provision of treatment for such infants.
Page 2

I am sure you will agree that our government —- regardless of the branch or
which political party may be dominant at the time -- is primarily concerned
with the provision of health and medical care, not about withholding it.
Indeed, that point of view was emphasized by President Reagan last spring in
an April 30 memorandum in which the President instructed both the
AttorneyGeneral and the Secretary of Health and Human Services to exercise
their authorities to enforce Federal laws that prohibit discrimination against
the handicapped. President Reagan took special note of Section 504 of the
Rehabilitation Act of 1973, which (and I quote from the President's
memorandum) "forbids recipients of Federal funds from withholding from
handicapped citizens, simply because they are handicapped, any benefit or
service that would ordinarily be provided to persons without handicaps." The
President noted that the law specifically applies to "hospitals and other

providers of health services receiving Federal assistance."

The closing paragraph of the President's memorandum sums up the policy of this
Administration regarding medical care for handicapped infants.

"Our Nation's commitment to equal protection of the law will have little
meaning, if we deny such protection to those who have not been blessed
with the same physical or mental gifts we too often take for granted. I
support Federal laws prohibiting discrimination against the handicapped
and remain determined that such laws will be vigorously enforced."
Page 3

As a follow-up to the President's instruction, Secretary Richard S. Schweiker
asked Ms. Dotson to issue a notice to health care providers which are
reimbursed under Medicaid and Medicare. The Secretary said, "In providing
this notice, we are reaffirming the strong commitment of the American people
and their laws to the protection of human life." With your permission,

Mr. Chairman, I would like to submit for the record both the Department 's
"Notice to Health Care Providers," dated May 18, and the Department's press
release of the same date. Ms. Dotson will then discuss the Notice to
Providers in her remarks.

The President's instructions and the Department's Notice to Health Care
Providers were a result of a recently widely publicized occurrence in which a
handicapped newborn infant, called "Infant Doe," was allowed to die.

Infant Doe was born with Down Syndrome, a form of mental retardation that is
genetically transmitted. We know that Infant Doe also suffered an esophageal
‘ atresia, a malformation of the esophagus which prevents the taking of
nourishment but which may be corrected with surgery. Surgery was not
performed to correct the atresia; Infant Doe was not fed, either orally or by
intravenous method) and, seven (7) days after birth the child died.
Page 4

The basic principle in this case is that the child was allowed to.‘die because someone
else made the judgement that the child's life was not worth living. Mr. Chairman, I can
assure you that there is no way to assess or to estimate the 1.Q. or the potential

of a Down Syndrome child at the time of that child's birth. But whatever the degree

of retardation may be, this handicap is never a justification for witholding treat-

ment.

In eb-easesmof esophgeal atresia, corrective surgery is indicated and is nearly
Witte TeEeATiwg BHid OE FECT

always successful. In my own experiencey I did not loose a full term baby in the
PRwcre se

last eight years that I was a, surgeon and my survival rate for premature babies was

88%. I do not mean to minimize the difficulty for the surgeon, the anxiety for

the parents, or the discomfort of the patient. These are all familiar to me, as

Iwas among the first to perform such an operation nearly 35 years ago and since

then my colleagues and I have done some 475 procedures. Each case was special.

onk
But after recovery, these babies ssweusil able to take nourishment by mouth.

Mr. Chairman, just aszan aside, let me say that one of the benefits of being a
65~year-old pediatric surgeon 4s that now and then I meet some tall, good-looking
man or woman, full of life and health, whom I had first met as 4 newborn lying
on my operating table, struggling with an esophgeal atresia or another condition,

which was successfully corrected.
Page 5

SORCIOA ow THE VeasRen/
Sash procedures,are no longer unusual. And often it seems as though every day

medicine adds another new life-saving procedure to an already impressive list
of victories. More and more therapeutic options are opening up, giving
physicians greater opportunities, in the words of the Hippocratic Oath, "to
help the sick according to my ability and judgment, but never with a view to

injury and wrongdoing."

In other words, Mr. Chairman, to return to the issue before us this morning,
the professional medical question posed by the birth of a disabled infant is
"How can we treat this baby, save its life and improve its potential quality
of life?" The President's memorandum and our Department's notice to
providers, ought to be seen in this context, as indicating the government 's
support for the provision of — not the withholding of -- treatment for
disabled infants. In this respect, an enlightened government becomes the
natural ally of enlightened medical practice.

In my experience, this type of event has two aspects to it, and each one is
important. First, there is the nature of the medical problem presented by the
infant itself. Second, there is the role of the family of the infant, the

people who are responsible for the infant appearing in the first place.
Page §

I indicated that medical and scientific advances constantly provide new ways
to save lives and improve the quality of life for the newborn. But medicine
may never have all the solutions to all the problems that occur at birth. I
personally foresee no medical solution to a cephalodymus or an anancephalic
child. The first is a one-headed twin; the second, a child with virtually no
functioning brain at all. In these casesyi the prognosis is an early and
merciful death by natural causes. There are no so-called "heroic measures"

possible and intervention would merely prolong the patient's process of dying.

Some of Nature's errors are extraordinary and frightening...but Nature also
has the kindness to take them away. For such infants, neither medicine nor
law can be of any help. And neither medicine or law should prolong these
infants process of dying. I would presume that these unfortunate exceptions
are net the center of this Committee's interest.

In mo:t instances, however, the course of treatment is quite clear. The vast
majority of disabled infants are within the realm of treatment. Moreover, Mr.
Chairnan, I believe there is one "bottom line” in all these cases and it is
that you feed the patient - either orally or intravenously. Indeed, in the case
of Infant Doe, the fact that nourishment was witheld probably did more than

any other single fact to shock the medical profession and the general public.

Ganety, 4tr.. .Cheirnan, -we: should eot.-let anyone's emphasis on the most difficult

cases distract our attention from the basic principle-that we must not discrin-

inate against handicapped infants.
Page 7

This point was made on May 18 by Assistant Secretary Dr. Robert Rubin in the
course of his appearance on the evening television show, "The MacNeil-Lehrer
Report." Speaking for the Administration, Dr. Rubin said,
"We're not talking about prolonging a life that inevitably is going to
die. What we're talking about here is discriminating against children
who, if it weren't for the fact that they were handicapped, would be given
appropriate medical treatment."
Mr. Chairman, I want to focus now on another question and draw from my
personal experience as a physician. Once a handicapped child is being cared
for within the realm of medicine, what ought we reasonably to expect from
physicians? | .

let me suggest several principles that some physicians have found useful when
they confront the kinds of situations we are discussing:

First, the physician must know a great deal about the infant's disease process
or disabling condition. As science and medicine continue to evolve, this is
an ever-growing responsibility and requires that the physicians must have
great knowledge about and experience with the lesion in question.

Second, the physician has to know as much as possible about the patient.
Third, based on the first two, the physician has to draw some very important

conclusions about how that process or condition affects this particular

patient.
Page 8

Fourth, physicians should be extremely cautious in making any guesses as to
the "quality of life" the patient will ultimately enjoy. We frequently have
absolutely no way of predicting how happy or smart or active a person may be
at some point down the road in his or her life. The task for the physician is
to do whatever possible so that the patient can enjoy to the fullest whatever
he or she ultimately determines is "quality." l_Owokasmawn 7449 Yau
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Mr. Chairman, I said that there are two aspects of these cases that bear close
study. The first aspect I have just discussed and its focus is directly upon

the infant and the infant's medical condition. The other aspect concerns the

type of support the infant's family is: given by the physician, the hospital

and the community.

-I would like to suggest certain principles which, if followed, will enable
those who care for a handicapped child to work better with the family to achieve
the greatest possible benefits for the child. Having followed these princi-

ples, I can also tell you that I have never had a patienmt-omea parent tell me

    
  
  

that they wished I had not saved these life ommmhat. of their child, And I can
alos tell you that many of these children suffered conditions that/I, personally,

would have found difficult to bear.

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Page 9

First, the physician must sit down with the family and thoroughly go through
the nature of the infant's condition, what the medical experience with such a
condition has been so far, what kinds of things can be done immediately, and
what the options may be later on.

Second, the physician must be familiar with and understand the natural
responses of parents to the disabled newborn...their feelings of sadness,
guilt, anger, even of shame. The parents will be concerned about the
judgments of their neighbors and friends. Therefore, the physician represents

not only medical care -- but the outside world as well.

Third, the physician must demonstrate that the parents are needed as partners
in the processes of medical care and that, for a disabled infant just as for a
"normal" child, there is just no substitute for loving, caring parents.
Gradually, as the network of support grows, the parents will become more
centrally involved and more competent to care for their child and for
themselves, too.
Page 10

Fourth, a physician should try to get the child into the hands of the family
just as soon as possible. Staring through a pane of thick glass at a little
“baby in a covered qeotwete over in the corner is just not my idea of how to
bring parents and any new child together. in-my~owr-expertenee, I suggest
that the parents visit the child as soon as possible. Even though the baby
may be bandaged, intubated, monitored, and fed with a hyperalimentation line,
the parents can and should touch the child -- if possible, hold it and cuddle

it.

Fifth, physicians and hospitals must take a positive, active role in getting
the parents and the child linked up with available social and medical support
groups in the commmity. Continuity of care and total care is important for
all patients -—- it is critical for infants with a disability. And above all
the responsible physician must have the mind set and commitment to assure the
family that he or she will be an advocate for their child and for the parents.

Finally, Mr. Chairman, I want to commend you for holding this hearing and for
focusing congressional attention on this important and complex issue. I
‘believe that the people of our country have demonstrated recently just how
concerned they are about protecting and caring for newborn babies, regardless
of whether they are "perfect", whatever that means.
Page 11

In conclusion, Mr. Chairman, permit me to drift back to science and medicine
for a moment. If the decisions in this area that we face today seem complex,
then the future holds even more complexity, and for one important reason -- it
also holds more hope. What is extraordinary in medicine today will be
ordinary tomorrow. What was extraordinary in medicine yesterday is ordinary
today. And this is perhaps true in no field more than it is in neonatology.

During the past decade we have made progress in neonatology, in intensive care
for newborns and in pediatric surgery that enables us to treat successfully
many conditions that were not treatable only a few years ago. The mechanical
ventilator and various other automatic monitors and devices enable us to
provide the precision care required by very premature and very sick babies.
Advances in pediatric surgery allow us to restore and repair organs and limbs
whose malfunctions and malformations previously caused death, deformity and
permanent disability.
Page 12

We all must work together to enable those who care for the less-than-perfect
newborn to continue their remarkable work. The most compelling opportunity
is for our government and our nation's leaders -- in all fields and at all
levels -- to reaffirm our national commitment to providing compassionate and
high quality medical care for all our Nation's children. The President and
Secretary Schweiker have done that and as the Surgeon General I am pleased

to do so again today.

Thank you, Mr. Ghairman. Ms. Dotson has a short statement describing the
activities of the Office of Civil Rights and then she and I will be happy to

answer questions.