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EC 162 422

Child Abuse Prevention and Treatment and Adoption Reform Act Amendments of 1983. Hearings before the Subcommittee on Family and Human Services of the Committee on Labor and Human Resources. United States Sentate, Ninety-Eighth Congress, First Session (April 6, 11, and 14, 1933) .

Congress of the U,S,, Washington, D.C. Senate Committee on Labor and Human Resources. Apr 83

601p.; For related document, see EC 162 421. Legal/Legislative/Regulatory Materials (090) Viewpoints (120)

MF03 Plus Postage. PC Not Available from EDRS. ♦Adoption; *Child Abuse; *Child i*2glect; Ethics; Federal Legislation; Intervention, Medical Services

Adoption Reform Act; *Child Abuse Prevention Treatment; Reauthorization Legislation

ABSTRACT

Statements and papers presented to the U.S. Senate during 3 days of hearings on the Child Abuse Prevention and Treatment and Adoption Reform Act Amendments of 1983 are included in this document. Witnesses include physicians, psychologists, human services administrators, parents, heads of social service agencies, and organizations advocating adoption. Witnesses are questioned by members of the Subcommittee on Family and Human Services of the Committee on Labor and Human Resources. In addition, articles and publications on abuse and adoption and copies of letters on abuse and adoption are included. Among aspects addressed are ethical issues involved in the "Baby Doe" case, experiences of adopting children with special needs, status of child abuse demonstration projects, and the prevention of birth defects. (CL)

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* Reproductions supplied by EDRS are the best that can be made *

* from the original document. * ***************************************************** ***********

S. Hrg. 9&-237

ERIC

CHILD ABUSE PREVENTION AND TREATMENT AND ADOPTION REFORM ACT AMENDMENTS OF 1983

CD

HEAEINGS

BEFORE THE

SUBCOMMITTEE ON FAMILY AND HUMAN SERVICES

OF THE

COMMITTEE ON LABOR AND HUMAN RESOimCES UNITED STATES SENATE

NINETY-EIGHTH CONGRESS FIRST SESSION

APRIL 6, 11, AND 14, 1983

U.S. DEPARTMENT OF EDUCATION

NATIONAL INSTITUTE OF EOUCATION

EDUCATIONAL RESOURCES INFORMATION CENTER (ERIC) This docijfTU?nt has heen feproducod as received from the pc-rson or orgnnr/ation ori()in«itin(} it.

Minor chancjes hav«! t;t;en made to improve ft'pfoducnon qunlitv.

Points of view or opinions sralnd in this docu- ment do not n<!Ce!.5afi!v represent oflicini NIE position or policy

^ Printed for the use of the Committee on Labor and H'lman Resources

^ U.S. GOVERNMENT PRINTING OFFICE

\^ li2-024 O WASHINGTON : 1983

COMMITTEE ON LABOR AND HUMAN RESOURCES

ORRIN G. HATCH, Utah, Chairman ROBERT T. STAFFORD, Vermont EDWARD M. KENNEDY, Massachusetts

DAN QUAYLE, Indiana JENNINGS RANDOLPH, West Virginia

DON NICKLES, Oklahoma CLAIBORNE PELL, Rhode Island

GORDON J. HUMPHREY. New Hampshire THOMAS F. EAGLETON, Missouri JEREMIAH DENTON, Alabama DONALD W. RIEGLE, Jr., Mich . fin

LOWELL P. WEICKER, Jr., Connecticut HOWARD M. METZENBAUM, Ohio

CHARLES E. GRASSLEY, Iowa SPARK M. MATSUNAGA, Hawaii

JOHN P. EAST, North Carolina CHRISTOPHER J. DODD, Connecticut

PAULA HAWKINS, Florida

Ronald F. Docksai, Staff Director Kathryn O'L, Higgins, Minority Staff Director

Subcommittee on Family and Human Services

JEREMIAH DENTON, Alabama, Chairman GORDON J. HUMPHREY, New Hampshire CHRISTOPHER J. DODD, Connecticut DON NICKLES, Oklahoma THOMAS F. EAGLETON, Missouri

LOWELL P, WEICKER, Jr., Connecticut HOWARD M. METZENBAUM. Ohio

CHARLES E. GRASSLEY, Iowa EDWARD M. KENNEDY, Massachusetts

ORRIN G. HATCH, Utah (Ex Officio)

(Ex OfTicio)

N. Nabers Cabaniss, Professional Staff Member Michael Navlor, Minority Professional Staff Member

ill)

3

CONTENTS

CHRONOLOGICAL LIST OF WITNESSES Wednesday, April 6, 1983

Page

Koop, C. Everett, M.D., Surgeon General of the United States, and Ms. Betty Lou Dotson, Director, Office of Civil Rights, Department of Health and Human Services g

Little, George A., M.D., American Academy of Pediatrics; Dr. David McLone, pediatric neurosurgeon. Children's Memorial Hospital, Chicago, 111.; Father John J. Paris, S.J., associate professor of social ethics. Holy Cross College; and Dr. Paul Ramsey, professor of religion, Princeton University, a panel 47

Rossow, Carl and Rachel, accompanied by their 3 natural children and 11 adopted medically fragile children; as introduced by Hon. Lowell S. Weicker, a U.S. Senator from the State of Connecticut 122

McGee, Dr. John, psychologist. University of Nebraska; and Mrs. Karen Green-McGowan, R.in., Glenwood, Iowa : 132

Monday, April 11, 1983

Hodges. Clarence E., Commissioner, Administration for Children, Youth and Families, Department of Health and Human Services, accompanied by James A. Harrell, Director, National Center on Child Abuse and Neglect, Department of Health and Human Services 200

Holder, Wayne M., director, children's division, American Humane Society; Eli Newberger, pediatrician. Children's Hospital, Boston, Mass.; and Greg- ory Loken, senior counsel. Covenant House, New York, N.Y 219

Bigger, Thelma, president. Parents Anonymous, Alabama chapter; Timothy McNalW, group accounting manager, Johnson & Johnson, Skillman, N.J.; Arnie Sherman, national director. Camp Fire, Inc.; Fran Vecchiolla, project coordinator, Connecticut children protection .project; and* Marty Palmer, medical director of ambulatory care. Primary Children's Center, Salt Lake City, Utah 304

Thursday, April 14, 1983

Hardy, Dorcas R., Assistant Secretary for Human Development Services, Department of Health and Human Services 479

Piasecki, Marlene, director. National Adoption Exchange; Toni McHugh, chairman. Board of Directors, National Committee for Adoption, accompa- nied by Candace Mueller, director for public policy and professional prac- tice. National Committee for Adoption; and,Kathy Sreedhar, aidoption rep- resentative. Missionaries of Charity, a panel 490

DeBolt, Robert W., founder. Aid to Adoption of Special Kids; and Clara Valiente-Barksdale, executive director. New York Council on Adoptable Children < 526

Flynn, Laurie, director. North American Council on Adoptable Children, Inc., and Elaine P. Winslow, president, Alabama Friends of Adoption 549

STATEMENTS

American Bar Association, Robert D. Evans, director, prepared statement 465

American Medical Association, prepared statement (with enclosures) 417

Association of Junior Leagues, Inc., prepared statement 406

(III)

IV

Barksdale-Valiente, Clara, New York Council on Adoptable Children (COAC), prepared statement ••• •••••• ^'^^

Bigger, Thelma, president, Parents Anonymous, Alabama chanter; A»ff»^thy McNally, group accounting manager, Johnson & Johnson, Skillman^^N.J.; Arnie Sherman, national director. Camp Fire, Inc.; Fran Vecchiolla, project coordinator, Connecticut children protection project; and Marty Palmer, medical director of ambulatory care, Primary Children's Center, Salt Lake

City, Utah 304

Prepared statement •••••• ;• •; tV" ;!!'

Chadwick, David, M.D., medical director. Children s Hospital and Health Center, of San Diego, Calif., prepared statement - 388

DeBolt, Robert W., founder. Aid to Adoption of Special Kids; and Clara Valiente-Barksdale, executive director. New York Council on Adoptable

Children §26

Prepared statement - •.

Dodd, Hon. Christopher J., a U.S. Senator from the Stale of Connecticut, prepared statements •••••••• 5-199-478

Dotson, Betty Lou, Director, Office for Civil Rights, Department of Health

and Human Services, prepared statement •• 25

F^ynn, Laurie, director, North American Council on Adoptable Children, Inc.,

ahtJ Elaine P. Winslow, president* Alabama Friends of Adoption 549

Prepared statement 553

Gentry, Theartice, Ph. D., consultant. Gentry, Inman, & Associates, prepared statement ••• ;"; J

Grassley, Hon. Charles E., a U.S. Senator from the State of Iowa, prepared statement ; ^ '

Hardy, Dorcas R., Assistant Secretary for Human Development Services,

Department of Health and Human Services 479

Prepared statement ••• ; •• ^'^^

Hart, Stuart N., Ph. D., project director, Indiana University, prepared state-

Hatch,^*Honr'Or^^^^^ the State of Utah, prepared statement ^ ; •• "•.vr* ;v"":v: •;

Hodges, Clarence E.» Commissioner, Administration for Children, Youth and Families, Department of Health and Human Services, accompanied by James A. Harrell, Director, National Center on Child Abuse and Neglect,

Department of Health and Human Services 200

Prepared statement ••• 20d

Holder, Wayne M., diwctor, children's division, American Humane bociety; Eli Newberger, pediatrician, Children's Hospital, Boston, Mass.; and Greg- ory Loken, senior counsel. Covenant House, New York, N.Y 219

Prepared stafement ••• - ;"w "V;"::"

Koop, C. Everett, M.D., Surgeon General of the United States, and Ms. Betty Lou Dotson, Director, Office of Civil Rights, Department of Health and

Human Services

Prepared statement v V

Little, George A„ M.D., American Academy of Pediatrics; Dr. David McLone, pediatric neurosurgeon, Children's Memorial Hospital, Chicago, 111.; Father John J. Paris, S.J., associate professor of social ethics. Holy Cross College;

and Dr. Paul Ramsey, professor of religion, Princeton University, a panel 47

Prepared statement •••• V ' :* V *: nci

, Loken, Gregory A., senior staff attorney. Covenant House, prepared statement Zbb

Marindin, Hope, chairman. Committee for Single Adoptive Parents, prepared statement ; •• :y

McGee, Dr. John, psychologist. University of Nebraska; and Mrs. Karen , Green-McGowan, R.N., Glenwood. Iowa •••

McHugh, Toni. chairman of the board of directors, the National Committee for Adoption, Inc., prepared statement •• 5Uz

McLone. David G., M.D., Ph. D.. associate professor of surgery (neurosurgery), Northwestern University Medical School, and chairman, Division of Pediat- ric Neurosurgery, Children's Memorial Hospital, prepared statement....^....... 65

McNally, Timothy C, group financial manager, Johnson & Johnson Baby Products Co., prepared statement (with attachments)..'... 317

Mueller. Bruce A., senior vice president, Emett & Chandler Illinois, Inc.. prepared statement ; 544

National Child Abuse Coalition. Thomas L. Birch, adviser, prepared state- ment

V

. Page

National Council of State Public Welfare Administrators, Merle E. Ipringer, chair, prepared statement 438

Nesson, H. Richard, M.D., president, Brigham and Women's Hospital, Boston, Mass., prepared statement 190

Newberger, Eli H., M.D., director, family development study. Children's Hos- pital, Boston, Mass.; prepared statement 235

Palmer, William M., medical director of ambulatory care. Primary Children's Center, prepared statement 370

Paris, Father John J., S.J., associate professo.r of social ethics. Holy Cross College, prepared statement 85

Piasecki, Marlene, director. National Adoption Exchange; Toni McHugh, chairman. Board of Directors, National Committee for Adoption, accompa- nied by Candace Mueller, director for public policy and professional prac- tice. National Committee for Adoption; and Kathy Sreedhar, adoption rep- resentative. Missionaries of Charity, a panel , 490

Prepared statement 494

Ramsey, Dr. Paul, professor of religion, Princeton University, prepared state- ment 98

Rossow,- Carl and Rachel, accompanied by their 3 natural children and 11 adopted medically fragile children; as introduced by Hon. Lowell S. Weicker, a U.S. Senator from the State of Connecticut 122

Sherman, Arnold E., national executive director. Camp Fire, Inc., prepared statement 3;i7

Sreedhar, Kathy, adoption representative. Missionaries of Charity, prepared statement 514

Vecchiolla, Francine J., N.S.W., director, Connecticut children's protection project, prepared statement 349

Winslow, Elaine P., president, Alabama Friends of Adoption, Birmingham, Ala., prepared statement 561

ADDITIONAL INFORMATION

Articles, publications, etc.:

Child Abuse: The Current Theory Base and Future Research Needs, by Eli H. Newberger, M.D., Carolyn Moore Newberger, EdD., and Robert L. Hampton, Ph. D 255

Children, Families in Distress: Too Little, Too Late? by Albert J. Nolnit, M.D 361

Courant Interviews Ann Quinn, DCYS Norwich, by Rosemary Keogh, Hartford Courant staff writer 364

E]vents Set for Prevention Month Observance, from Connecticut's Chil- dren, vol. Ill, No. II, spring 1983 860

More Employees Get Adoption Aid, More Companies Aid Employees on Adoptions, by Enid Nemy, from the New York Times, August 18, 1982... 540

Results of Treatment of Children Born With a Myelomenincocele, by David G. McLone, M.D., Ph.D., F.A.C.S., division of pediatric neurosur- gery, Children's Memorial Hospital 70

Communications to:

Heckler, Hon. Margaret, Secretary, Department of Health and Human Services, from Gary L. Curran, legislative consultant, American Life Lobby, Inc., April 5, 1983 (with attachments) 172

Ramsey, Dr. Paul, Department of Religion, Princeton University, Prince- ton, N.J., from Hon. Jeremiah Denton, a U.S. Senator from the State of

Alabama, April 15, 1983 171

Questions and answers:

Responses of Betty Lou Dotson, Director, Office of Civil Rights, Depart- ment of Health and Human Services to questions asked by Senator Nickles 34

Responses of Dr. John McGee to questions asked by Senator Denton 144

Responses of Dr. David McLone, pediatric neurosurgeon. Children's Me- morial Hospital, Chicago, III., to questions asked by:

Senator Denton . 148

Senator Dodd 148

Responses of the Rossow family to questions asked by Senator Dodd ISl

' 6

VI

Questions and answers— Continued

Responses of George A. Little, M.D., chairman, Department of Maternal and Child Health, Dartmouth Medical School, to questions asked by

Senator Den tori ••

Responses of John J. Paris, S.J., Department of Religious Studies, Holy

Cross College, to questions asked by Senator Denton 163

Responses of C. Everett Koop, Surgeon General of the United States to

questions asked by Senator Dodd •• 166

Responses of Gregory A. Loken, senior staff attorney. Covenant House, to

questions asked by Senator Denton 298

Responses of Francine J. VecchioUa, M.S.W., director, Connecticut chil- dren's protection project to questions asked by Senator Dodd 357

Responses of Wayne Holder, director. Children's Division, American

Humane Association to questions asked by Senator Dodd 442

Responses of Arnold E. Sherman, national executive director. Camp Fire,

Inc., to questions asked by Senator Dodd 455

Responses of Eli H. Newberger, M.D., director, family development study. Children's Hospital Medical Center, to questions asked by Senator

Dodd •• 457

Responses of Thelma Bigger, Parents Anonymous of Alabama, Inc., to

questions asked by Senator Dodd 472

Responses of Candace P. Mueller, MSW., director, public policy and pro- fessional practice. National Committee for Adoption to questions asked

by Senator Denton -'71

Responses of Clara Valiente-Barksdale, executive director, New York Council on Adoptable Children, to questions asked by:

Senator Denton •^'^^

Senator Dodd v "577

Responses of Elaine P. Winslow, president, Alabama Friends of Adoption,

to question asked by Senator Denton 579

Responses of Robert W. DeBolt, to questions asked by:

Senator Denton

Senator Dodd

Responses of Marlene Piasecki, director, National Adoption Exchange to questions asked by: ^

Senator Denton

Senator Dodd ^88

Responses of Dorcas Hardy, to questions asked by:

Senator Denton :^^Y

Senator Dodd

7.

CHILD ABUSE PREVENTION AND TREATMENT AND ADOPTION REFORM ACT AMENDMENTS OF 1983

WEDNESDAY, APRIL 6. 1983

U.S. Senate, Committee on Labor and Human Resources, Subcommittee on Family and Human Services,

Washington, D.C. The subcommittee met, pursuant to notice, at 2 p.m., in room 4:^0, Dirksen Senate Office Building, Senator Jeremiah Denton (chairman of the subcommittee) presiding.

Present: Senators Denton, Nickles, Weicker, and Grassley.

Opknin'g Statement ok Senator Denton

Senator Denton. This hearing will please come to order.

Good afternoon, and welcome. I'll ask you to indulge some hoarseness on my part today.

I want to welcome my colleague and respected friend, the distin- guished Senator from Oklahoma, Senator Nickles. We also expect the Senator from Iowa, Senator Grassley. I understand Senator Weicker, my distinguished colleague from Connecticut will be in- troducing one of our principal witnesses later on.

This afternoon the Subcommittee on Family and Human Serv- ices begins its third hearing of the 98th Congress and its first hear- ing in a series of three on the reauthorization of the Child Abuse Prevention and Treatment and Adoption Reform Act, the Federal program that assists States in combating child abuse and neglect, and that helps facilitate adoption of children with special needs.

We couldn't have a more authoritative witness than the Surgeon General, and I want to welcome him; Ms. Dotson, who is with him; and the others who will soon be called up, as well as all of the in- terested members of the public and the media who have come today.

The hearing this afternoon will focus on a particular type of ne- glect—the withholding of nourishment and medical treatment from infants born with mental or physical impairments.

This issue burst into public view last April with the so-called "Infant Doe" incident in Bloomington, Ind. The public was shocked when an infant "born with Down's syndrome and an incomplete esophagus was starved to death after his parents decided against an operation that could have saved his life.

(1)

Although the State intervened, a judge upheld t:he right of the physicians to withhold treatment upon the parents' request. The judge also refused to stay his ruling to allow time lor appeals.

An appeal to the U.S. Supreme Court was in progress when "Infant Doe" succumbed. The parents, the doctors and the ruling judge were all aware that several couples had expressed an Intercast in adopting "Infant Doe" and permitting the life-saving surgery

This incident presented rather starkly some of the troubling questions about our Nation's attitude about the value of protecting and nurturing one of the most defenseless forms of human life- handicapped infants.

In the Bloomington case, the infant was clearly not dying, but, rather, needed an operation that our Surgeon General, and witness today. Dr. C. Everett Koop, and many other doctors, say is nearly alv/ays successful. , . ^ ^ i

Furthermore, the decision to treat the infant was not made on the basis of the feasibility of medical treatment but, rather, on var- ious predictions about the quality of life the infant would attain.

Finally, in a modern, 20-century American hospital, an infant was denied nutrition and fluids, until he starved to death.

The entire incident suggested that the pediatricians attending the infant were acting more in accord with the expressed interests of the parents rather than with those of the silent infant that they were purportedly serving.

Incidents such as that— and there have been several document- ed—raise the question of whether the failure to protect our most defenseless citizens does not undermine one of the most fundamen- tal premises of our Constitution; namely, the equal protection under the law of all human life. Such incidents also raise the ques- tion of whether or not State and Federal child abuse statutes are adequately addressing a particularly egregious form of child abuse— starvation. . i.-

For that reason I have included as part of the reauthorization bill for the Federal child abuse program, language that specifically addresses the treatment of handicapped infants issue ^ Most of you in this room^must be aware of the administration s recent regulation requiring the posting of signs in health care facil- ities stating it is a violation of Federal law discriminatori?y to deny handicapped infants nutrition and medical treatment solely be- cause of their handicaps. ^

That regulation has been challenged in court. Arguments on tne case will be heard April 8, 2 days from now /

Many groups representing handicapped individuals nave ap- plauded the regulation and on March 29, six of these groups an- nounced that they were asking to sign on as codefendan^s in the

The groups that, in contrast, have brought suit against the ad- ministration have raised serious objections to statutory and regula- tory intervention. They have claimed that isolated examples like "Infant Doe" do not warrant Federal intervention, and that there is no evidence that ^'the care of handicapped infants represents a critical national problem." ^ i i.- ^

The contention that the practice of denying treatment is relati^^^^ ly rare is refuted by a recent documentary aired by WNEV-IV in

3

Boston. The reporters involved in compiling the documentary— in- cluding a Pulitzer Prize winner accumulated evidence on about 100 cases where treatment was withheld or withdrawn.

We will see an excerpt from that documentary today, and I com- mend the reporters and the station for courageously exposing this issue.

Furthermore, a paper published by two Yale pediatricians in H)78 stated that fully 14 percent of, the deaths in their nursery were a result of withholding treatment.

I hope that the witnesses today will give further estimates about the withholding of care to handicapped infants, or the incidents of withholding of care.

My personal belief is that this problem is of paramount impor- tance. Allowing the less than perfect amoiig us to die raises the ter- rifying possibility that more and more groups will he labeled as somehow defective and allow to perish. As Dr. Koop and others have often written or orally pointed out, Nazi Germany's final solu- tion was the last phase of a purification program which began in the ll)!30's with the killing of handicapped infants. The^e statistics and their implications demand a response.

The language on the treating of handicapped infants that is in- cluded in the reauthorization bill I intend to introduce today, with Senator Hatch, is identical to that included in the House bill. It will require States to have in place procedures that insure that in- fants at risk with life-threatening congenital impairments will be provided with nourishment, medically indicated treatment, and ap- propriate social services.

The language is not intended to apply to those infants who, to quote Dr. Paul Ramsey, are **born dying," or those infants who have diseases for which there is no known therapy.

However, in the vast majority of cases the indicated treatment is clear, and most handicapped infants can be treated. The language of the bill merely requires equality of treatment, and that all in- fants will be fed.

I am sure that Dr. Koop will further clarify the intent of the ad- ministration's regulation for us today.

There is rampant criticism that this policy might permit contin- ued life for some extremely mentally or physically handicapped children. But there appears to have been rapidly increasing error in the opposite direction error that has resulted in needless kill- ings or needless allowings to die; error that places too high a value on imperfect estimates of the quality of life a child might enjoy; error which ignores unanticipated favorable changes from "natural causes" as well as ignores improvements achievable by the not widely known but notable recent breakthroughs in both pediatric surgery and therapies applied after the infant has left the nursery.

We will hear some fascinating testimony about some cf these breakthroughs today from our panels of witnesses.

We will also address one final aspect of the withholding treat- ment question that is often tragically ignored in discussions about whether to treat handicapped infants. There are many people in this country who are willing even anxious to adopt severely, handicapped infants and to permit life-saving surgery.

The 'Infant Doc' case has already been cited and, in fact, there is currently a waiting list of parents who want to adopt children afflicted with Down's syndrome.

The reauthorization bill contains provisions that make the adop- tion of infants with congenital impairments a priority of the Fed- eral adoption .opportunities program. - , ,

We will meet this afternoon a family from Connecticut that has adopted 11 severely handicapped children. They will share with us some of their experiences in raising these children, and explain what advice they give to prospective adoptive parents.

Before we show our film excerpt, I would invite Senator Nickles for any opening remarks he cares to make. Senator Nickles. Thank you, Mr. Chairman. I would like to commend you for holding this hearing, especially for including in the hearings on the reauthorization of the Child Abuse Act today's hearing on the very sensitive and critical issue of the treatment and care of handicapped infants.

I appreciate your leadership in this field, and also your interest. I'm not that familiar with the legislation which you are introduc- ing, but I commend you for your personal attention that youve given to this very critical, sensitive, and difficult issue that many of us have wrestled with. I've had a personal interest in this area for some time and have been working on it; and I hope that we can make progress in seeing some positive improvement made through- out—not just in Federal policy— but throughout the hospitals and pediatric wards in this counfry.

It wasn't until the Nation became familiar with the plight ot "Baby Doe" about a year ago in Bloomington, Ind., that the gen- eral public really became aware that a problem existed. I believe that most people find that it is unconscionable that physicians and parents would consider it an option to allow a newborn baby to die by starvation or by lack of common medical treatment.

Today surveys of doctors and medical journals, both of which are cited by Dr Koop's, indicate that there are physicians advocating nontreatment of handicapped infants. The majority of physicians would support parents' wishes not to feed children with Down s

syndrome. ^ . , i. j u

Unfortunately, we don't know how often it happens today but with the attention this issue has received in recent weeks, there are indications that nontreatment and starvation of. handicapped infants occurs more often than we might care to believe.

The television documentary produced by the CBS affiliate in Boston which aired last month took a detailed look at the problem* Their findings reveal that even the most routine care to handi- capped infants is not usual.. During the confirmation hearing (^i Secretary Heckler, I asked for and later received histories on cases of alleged instances of infanticide. r

I still have some questions concerning the enforcement ol section 504 in these cases. I will address those later in this hearing.

Up until recently this was an issue that was primarily debated in the medical circles. Perhaps one of the greatest values of today s hearing might be to raise the consciousness of society at large, and not just a few select organizations or communities.

11

The issue of ap[)ropi iate medical treatment for handicapped in- fants is very complex, both medically and ethically. However, we, as a society, should not allow this complexity to serve as a barrier to seeking solutions which are now confined to only a few.

It is precisely because of the complex and interdisciplinary nature of the choices being made that we need broad participation in determining public policy. No single group should take sole re- sponsibility for creating and establishing standards for a multifac- eted issue with national implications.

This issue, as I mentioned before, Mr. Chairman, is sensitive; it's a civil rights issue; a moral issue; a national issue; and also a per- sonal issue that affects many people. It cuts across every political affiliation and it begs, I think, a responsible action.

I again wish to commend you for holding this hearing and also for Dr. Koop s participation, as well as Ms. Dotson, and our other panelists. You have assembled quite a cadre of experts to give their thoughts and opinions cn the entire issue of infanticide and I con- gratulate you for that. I hope that we'll be able to move expedi- tiously toward making some improvements in this area.

Senator Denton. Thank you. Senator Nickles. And, again, my admiration for your longstanding interest and activity in this field. It's a pleasure to sit with you today on what should be a porten- tious occasion for progress in the field.

At this point, before showing the film clip and beginning the hearing therewith, I would like to ask unanimous consent that a statement by Senator Dodd, ranking minority member of the sub- committee, be inserted in the record.

[No response.]

Without objection, it is so ordered.

[The prepared statement of Senator Dodd follows:]

PliK!'AKKI) Sta TKMKST aV SkN-AToH Dohl)

Mr. Chairman, I am certain that ue have a ip*eat deal to learn from the distinguished witnesses you have callefl before us this afternoon. I wouUi like to direct special attention, however, to the last fjproui) of witnesses who will te.stify today: namely, the Kossow family.

My connection with Rachel and Carl Rossow (,'oes back to H)75 when I first visited the i^ bed room ranch house they shared with their eight children. Since that time, they've moved to a larger house to accommodate the new additions to their family: six more chiltin n.

The Rosso V- f:imily literally makes the expression "disabled does not mean unable" come nljve. The accomplishments at home and at school of all 14 children deserve our highest praise. The efforts of Rachel and Carl Rossow in promoting their children's accomplishments merit our undivided attention.

Through the Rossows' experience in raising their children we can learn more about the kinds of supports, fiiiancial, educational, and otherwise, which must be provided to other parents of handicapped youngsters. Today, the Rossows will present the subcommittee with a brochure carrying a message of support for new parents of handicapped children. This brochure should be just tlie first step in pro- viding families like the Rossows with the specific assistance they need to insure that their children lead full and productive lives.

Senator Denton. We will begin this hearing by watching a short portion of the WNEV television documentary to which both Sena-

12

tor Nickles and 1 referred, entitled "Death in the Nursery," which aired last month on four consecutive nights in Boston. This is an excerpt of that program, a series of excerpts. [Film excerpt projected.] ^-^ ' ' c t\ r

Senator Denton. Our first panel of witnesses consists ot Ur. Everett Koop, U.S. Surgeon General, and a practicing pediatrician

for some 35 years. t^- r r»fr,^„ ,^f

Joining him is Ms. Betty Lou Dotson, Director of the Ottice ot Civil Rights, Department of Health and Human Services.

I would like to welcome both of you and to acknowledge, that Dr. Koop is not only, by virtue of his position the ranking doctor in the United States, but he is also by his experience and his pediatric practice an extremely authoritative witness on this subject. So, if you care to, please proceed.

STATKMENT OF C. KVERETT KOOP. M.D., SURGEON GENERAL OF ' THE UNITED STATES. AND MS. BETTY LOU DOTSON. DIRECTOR,

OFFICE OF CIVIL RIGHTS, DEPARTMENT OF HEALTH AND

HUMAN SERVICES

Dr. Koop. Thank you, Mr. Chairman. , . , t -i,

I have a prepared statement for the record, which I will summa- rize in the time allotted to me. ,. , , , t c r^r,

I am C. Everett Koop. I am a medical doctor. I am Surgeon Gen- eral of the U.S. Public Health Service.

But, for the subject of today's hearing, I will call upon my 6i3 years' experience as a pediatric surgeon, , , ,

When I began my career, sir, there were only half a dozen people in the United States who specialized in surgery for infants and children. When I came to Washington I had been practicing my specialty longer than anyone in North America.

As vou know, regulations protecting the handicapped newborn were issued by the Department of HHS last month. These regula- tions are now the subject of litigation; and while I can discuss the issues of health care for handicapped infants and the Department s policies concerning it, I must decline to offer an opinion, regarding matters presently in litigation. r ^ r>- ^ f v,^

Accompanying me today is Ms. Betty Lou Dotson, Director of the Department's Office for Civil Rights, and we look forward to dis- cussing some of the many issues regarding care of the newborn child with handicaps or operable defects.

I'm sure that you agree, sir, that our government is concerned with the provision of health care and not about withholding it. Ihe withholding of care and treatment from an infant born a year ago this month-as you haye already indicated, known as Baby Doe"— was the chief factor in focusing national attention on this

""As^r result of the "Bahy Doe" case, the President instructed the Attorney General and tihe Secretary of HHS to exercise their powers to enforce Federal laws that prohibit discrimination against

'1 wUl'^iofr^feat what you have already said about "Baby Doe, sir. but will say that the basic principle of this case is that the

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was allowed to die bocause someone else made the judgment that'the child's life was not worth living.

Mr. Chairman, I can assure you that there is no way to predict the I.Q. or the potential of the Down's syndrome child at the time of birth. I believe that the presence of Down's syndrome is never an^indication to withhold the correction of an accompanying defect, like esophageal atresia.

You should know that the surgery in question is nearly always successful. My colleagues and I have performed some 475 such pro- cedures with almost 100-percent survival and good-swallowing func- tion in full-term babies; and 88 percent is our record in prema- 'tures.

The moral, issue here is that no one may judge the quality of life of another, and we must not tolerate the attempts of those who take it upon themselves to do so.

Whether a handicapped person's life is worth living or not is not a medical question. The Government's position ought to be seen in the context of its support for the provision of— not the withholding of— treatment for disabled infants.

Thus, an enlightened Government becomes the natural ally of enlightened medicine.

While I hdve said and believe that medical science constantly provides new ways to save life and to improve it, medicine may never have the answers to all the problems that occur at birth. Let me stress here that some problems eimply are not correctable. Sonie handicapped infants, unfortunately, face imminent death. For such infants it is very important to note that we do not seek to fruitlessly prolong the process of dying; rather, we seek to guaran- tee that. infants who would live, given ordinary care, will not be denied the opportunity for life by those who would decide that their lives are not worth living.

I presume that the unfortunate exceptions I have noted here are not the subject of this subcommittee's interest. The vast majority of disabled youngsters are within the realm of treatment.

Even so, the bottom line in all these cases is that you must nour- ish the patient. When an infant in hospital is denied food and care, or whether an infant at home is denied food and care, the result is the same; it is child abuse.

The willful withholding of therapy, including nutrition, which leads to the death of a child is infanticide. This practice naturally is unlikely to be widely discussed outside a small, tight, circle of those involved in a particular case.

Nevertheless, we believe that "Baby Doe" was not just a singular instance, but rather, representative of a disturbing pattern about which we are becoming increasingly aware.

. Obviously, the number of such patients is difficult to estimate. It is not rare, and it is certainly not an isolated instance.

In 1976, when I was presented with the Ladd Gold Medal for ex- cellence in surgery by the American Academy of Pediatrics, I took that occasion to draw the attention of the academy to the growing practice of infanticide, and pointed out its moral and its ethical im- plications.^

I was aware then of what I said because at that time I had been practicing pediatric surgery for 30 years, and traveled enough as a

14

speaker tu know most of the pediatric surgeons in this country on a familiar basis, and to be aware of what some were doing.

In my role as editor-in-chief of the Journal of Pediatric Surgery for 15 years, I had my finger on the pulse of pediatric surgery and its practices. Let me offer some additional evidence which has been j,iccumulated:

You've already referred to tlie Duff and Campbell report in the New England Journal of Medicine in 1973 from Yale University, where the authors acknowledged that over a 2-year period, 14 per- cent of the deaths in the newborns of their unit had been decided upon and engineered in some way.

In 1977 the journal Pediatrics published a survey of the surgical section of the academy by Shaw and Randolph. A questionnaire had been sent to all pediatric surgeons in the academy and se^cted pediatricians. A great number of those answering the questionnaire felt that what might be a' poor quality of life, in their estimation, was sufficient reason not to treat the child for a defect which may have been incompatible with life but nevertheless was amenable to surgical correction.

Several months ago the CBS television program "Sixty Minutes called attention to several families who had made different deci- sions on the preservation of the lives of their newborn children. And, more recently, there was the Boston documentary, which we have just seen a portion of.

A just-released report of the President's Commission on Biomedi- cal Ethics refers to several surveys among pediatricians. A survey of California pediatricians showed that most would honor parents' wishes not to treat Down's syndrome newborns who had life-threat- ening intestinal obstructions, and another survey showed that many pediatricians would do the same with Down's syndrome in children born with congenital heart disease. Finally, a survey of Massachusetts pediatricians showed that 51 percent would not rec- ommend surgery to correct intestinal blockages in newborns with Down's syndrome.

In the past several years, sir, I have personally received about 20 calls from nurses who objected to carrying out orders from doctors to deny food to handicapped newborns. Some of these nurses have been faced with disciplinary actions or the threat of such actions because they opposed the decision to withhold nourishment.

Handicaps and unhappiness do not always go hand-in-hand. Some of the unhappiest children I have known were perfectly normal, physically. Many handicapped youngsters have cheerfully accepted difficulties that I would find hard to bear.

In other words, the quality of life is not measured by material and physical terms alone. j. i i i

I don't believe food should ever be withheld from a disabled infant. If the motivation is to hasten death, deliberate starvation is inhuman.

If treatment is withheld, as it is sometimes indicated, there are several principles: First, the physician must be fully aware of and knowledgeable about the infant's disease process or disabling condi- tion.

Second, the physician has to know as much as possible about his patient.

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9

Third, the physiciiiM has to draw important conclusions* about how that process or condition affects his patient.

And, finally, physicians must be extremely cautious in making any guesses or offering any speculations as to what quality of life the patient may ultimately enjoy.

We usually have no way of predicting accurately how smart or active or productive a person may be at some future time.

The job of the physician is to do all that he can to enhance the patient's enjoyment of whatever he or she ultimately determines is quality.

I don't minimize, sir, the difficulty of sheepherding a family through tough times, of providing access to all available support mechanisms, and of espousing the cause of patient and family until they are figuratively on their feet. I spent my career doing that, and not without some satisfaction.

I think it significant that no patient or parent has ever told me later that he or she wished that we had not tried so hard to save the life of their child. I think that is particularly important when one considers that when I came to Washington, I probably had op- erated upon more newborns than anyone in this country.

point out that the future holds out even more complexity, and for one important reason: it holds out more hope.

What is extraordinary in medicine today will be coii.Tionplace to- morrow. And this is no more true in any medical field than in neonatology.

Advances in medicine enable us to restore and repaii limbs and organs whose malfunctions and malformations previously meant death, deformity, or permanent disability.

As a society, we should help both families and the health care professionals who care for the less-than-perfect newborn to contin- ue their remarkable work.

The most compelling opportunity is for our Government and our Nation's leaders to reaffirm our national commitment to providing compassionate, high-quality medical care for all of our Nation's children.

I thank you, Mr. Chairman. And following Ms. Dotson's remarks at this time, she and I would be most happy to consider whatever questions you may have.

[The prepared statement of Dr. Koop follows:]

If the decisions we face in thi

today seem complex, let me

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Prki'ahki) Statkmknt ok C. ICvKRhriT Ko()i>. M.D., Surgeon General, Public Health Service, Department of Health and Human Services

tir. .Chaimvm, I am C. Everett Koop. I cim a medical doctor and the Surgeon

Genon-il of the United States Public Health Service. For the subject that is

btitore the Conmittee this morning, I will 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 U.S. who specialized in surgical procedures for

infants and young children. Pediatric surgery has since becaie an important

li^s-savin; specialty in nedicine and I- air. very proud to have been part of

that history and development. When I came to Washington In 1981, I had been

practicing the specialty of pediatric surgery longer than anyone in North

AiTkirica.

Before I continue, Mr. Chaiman, may I introduce to the Ccrmittee my colloajue, Ms. Betty lou Dot son, who is Director of the Office for Civil Rights of the Deparbnent of Health and Human Services. The two of us look foryjard to discussir^ with you and this Ccmnittee sane of the mary concerns surrcxindirt] the issue of care for the newborn child with handicaps or operable defects.

T am sure you will agree that our government regardless of the branch or which political party may be daninant at the time is primarily concerned with the prwisior. of health and medical care, not about withholding it. Indeed, that point of view was emphasized last Spring in an April 30 n^morarxium in --jhich the President instructed both the Attorney General and the 5\ecretary of Health and Human Services tc exercise their authorities to

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2.

enforce Federal laws that prohibit discrimination against the handicapped. President Reajan took special note of Section 504 of the Rehabilitation Act of 1973, which (and I quote fran the President's inemorandum) "forbids recipients of Federal funds from withholding fran 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 prov.iders of health services receiving Federal assistance."

As a follow-up to the President's instruction, then-Secretacy Richard S. Schweiker asked Ms. Etotson to issue a notice to health care providers which are reinibursed ^.inder Medicaid and Medicare. The Secretary said/ "In providing this notice, we are reaffinnirg the strong ccmmitment of the American peqplie and their laws to the protection of human life."

Last month, as you know, the Department promulgated regulations which require that reminders of the applicability of Federal law to the protection of handicapped newborns be conspicuously posted in hospitals. The regulations also offer a reans for any person with