ST- BY

     C. BVERETT KOOP, M.D.
SURGEON GENERAL OF TEE FUBLIC HRmrll SERVICE
  DBPiiRTMmT OF ERALTE & BlJmt? SBRVICRS

BEFORE TEB

suBmQmTm ON SEIlEcT RDlmTIoN
         OF TEE

COMFSTTEE ON EDUCATION i LABOR


HR. CHAIFMAN, 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

Wrgeon General to speak for the Department of Health and Hum Services.

Hrmever, for the subject that is before the Camittee this morning, I will
also draw upon my personal experiences of 35 years as a pediatric smug.
wzlen I began that career there were only a half dozen people in the a who

specialized in surgical procedures for infants and youug 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 auyone in Worth America.

Before I continue, Mr. Chairman, may I introduce to the Ccmittee my

colleague, Ms. Betty IAN Dotson, who is Director of the Office of Civil Rights

of the Department of Health and Hman Services.  The two of us look forward to

discussing with you and this Cuunittee 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 "Cn Withholding Treatment fVan Infsnts with Handicaps and

Other Cperable 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.


I am sure you will agree that our government - regardless of' the branch or

which political party nray be dauinant at the time - is prirmrily 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 memoranda in which the President instructed both the

AttorneyGeneral and the Secretary of Health and Ruuan 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 19'73, which (and I quote frun the President's

wnorsndm) "forbids recipients of Federal firnds fran 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 sups up the policy of this

Administration regarding medical care for handicapped infants.

"Our Nation's caxnitment 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 Mdicapped

and resmin detemined that such laws will be vigorously enforced."


As a follow-up to the Fresident~s instruction, Secretary Richard S. Schweiker

asked Ms. Dotson to issue a notice to health cam providers which are

reimbursed under Medicaid and Medicare.  The Secretary said, "In providing

this notice, we are reaffirming the strong rvmnil2nent of the knericsn people

and their laws to the protection of humn life." With your permission,

Mr. Chairman, I would like to sutxnit for the record both the Department's

Votice to Health Care Providers ," dated May 18, and the Department's press

release of the same date.  Ms. IMson 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 allawed to die.

Infant Doe was born with Down Syndrane, a form of mental retardation that is

genetically transmitted.  We know that Infant Doe also suffered an esophageal

atresia, a mdlfomation of the esophagus which prevents the taking of

nourishnent but which may be corrected with surgery.  %rgery was not

performed to correct the atresia; Infant Doe was not fed, either orally or by
intravenous metwand, seven (7) days after birth the child died.


The basic principle in this case is that the child was allowed to.!die because someone
t:
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 I.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 e esophgeal atresia , corrective surgery is indicated and is nearly
                     wl?l+ y*cbarcbv1. *MC/J rrSFCc7

always successful. In my own experiencen I did not loose a full term baby in the
                 fYIltWb1 d&

last eight years that I was a/\aurgeon 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

I was 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.

But after recovery, these babies

able to take nourishment by mouth.

Mr. Chairman, just assan aside, let me say that one of the benefits of being a

65-year-old pediatric surgeon is that now and then I meet some tall, good-looking

man or woman, full of life and health, whom I had first met as a newborn lying

on my operating table, struggling with an eaophgeal atresia or another condition,

which vaa successfully corrected.


JOFC'CVt    oA/ 7?t[ AJWU~CJ
8rrek procedures,me no 1-r musual.  And often it seem as though every day
medicine adds another new lifesaving 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 professiohalmedical question posed by the birth of a disabled infant is
Wow csn we treat this baby, save its life and improve its potential quality

of life?"  The President's nmorandun and our DepartmentTs notice to
providers, ought to be seen in this context, as indicating the government's
support for the provision of -   the withholding of - treatment for

disabled infants.  In this respect, an enlightened government becunes 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.


I indmated that medical and scientific advances canstantly provide new mys

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 casesfi 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.

Sane 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 presune that these unfortunate exceptions

are not the center of this &xmitteeqs interest.

In mott instances, however, the course of treatment is quite clear. The vast

majority of disabled infants are within the realm of treatment, Moreover, Mr.

Chaiman, 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.
-~e-.~t~;~~.~t,+st anyone's emphasis on the most difficult

cases distract our attention from the basic principle:&at we must not discrim-

inate against handicapped infants.


This point w8s made on May 18 by Assistant secretary Dr. Robert' &&in in the

wurse of his appearaWe on the evening television show, mIhe MacNeil-Lehrer

Report." speaking for the Administration, Dr. Rubin said,

We're not talking about prolor@ng 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 m handicapped, would be given
appropriate medical treatment ."

Mr. Chainnan, I want to focus now on another question and draw fran my

personal experience as a physician.  Qxe a handicapped child is being cared

for within the realm of msdicine, what ought we reasonably to expect frau

physicians?

let me suggest several principles that sane physicians have found useful when

they confront the kinds of situations m are discussing:

First, the physician mst know a great deal about the infant's disease process

or disabling condition.  As science and medicine oontinue 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 nmch as possible about the patient.

lhird, based on the first two, the physician has to draw scms very important

amclusions about how that process or omdition affects this particuler

                                          `.
patient.


Fourth, physicians should be extremely cautious in making any guesses as to

the WJality of life" the patient will ultimately enJoy. We frequently have

absolutely no way of predicting how happy or amart or active a person= be
at SW point down the road in his or her life.  `Ihe 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."   I uA/PfiLJwwn 7#99 YIU

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.  `he 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 pQssible benefits for the child. having followed these princi-

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

that they wished I had not saved the& life

alos tell you that many of these children

would have found difficult to bear.


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 sc far, what kinds of things can be done imediately, 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

"normlw child, there is just no substitute for loving, caring parents.

gradually, as the network of support grows, the parents will becune more

m&rally involved and mere canpetent to care for their child and for

themselves, too.


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
             t&r Gfw7an
baby in a covered Ss&mHSover in the corner is just not my idea of how to

bring parents and any new child together.  %nqy~w, 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 cm 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 cumuhity.  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 camitment 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 ccmend you for holding this hearing and for

focusing congmssional attention on this important and ccmplex issue. I

.believe that the people of our oomtry have demmstrated recently just how

concerned they are about protecting and caring for newborn babies, regardless

of whether they am "perfect", whatever that means.


page 11

In cawlusion, Mr. Chaiman, permit me to drift back to science and medicine
                                         ,

for a mnent.  If the decisions in #is area that we face today seem cmplex,

then the future holds even more cauplexity, and for one important reason - it

also holds more hope.  Uhat is extraordinary in medicine today will be

ordinary tatmrow. What was extraordinary in medicine yesterday is ordinary

WY.  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

amy conditians 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 I2

We all must work together to enable those who care for the leas-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 Schwelker have done that and as the Surgeon General I am pleased

to do so again today.

Thank you, Mr. Chairman. 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.