Appendix — C. W. ex rel. McKinley v. Wasiek

? el, Be ee Ors

FILED

94 BORN 15 199%

No.

‘

IN THE

SUPREME COURT OF THE UNITED STATES

OCTOBER TERM, 1994

C.W., By Her Guardian Ad Liten,

Loralyn McKinley, Esquire, Petitioner,

Vv.

Dolores Wasiek, Respondent.

On Petition for a Writ of Certiorari

to the Superior Court of Pennsylvania

APPENDIX TO PETITION FOR A

WRIT OF CERTIORARI TO THE

SUPERIOR COURT OF PENNSYLVANIA

PART II

Loralyn McKinley

Counsel of Record

Community Legal Services, Inc.

1424 Chestnut Street

Philadelphia, PA 19103

(215) 981-3814

Mattheyv M. Strickler

Leslie H. Smith

1735 Market Street

Philadelphia, PA 19103

(215) 665-8500

Counsel for Petitioner

TABLE OF CONTENTS TO APPENDIZ

Order of Supreme Court of

Pennsylvania Denying Petition For

Allowance of Appeal... o «eo « « Ae

Superior Court of Pennsylvania

Majority Opinion on Reargument... A-3

Dissenting Opinion on Reargument

(JOMMNGOM, Je) « «© o-2 © 0 0 0 6 0 w AEF

Dissenting Opinion on Reargument

(Huddeck, J.) «- «© «© © © «© «© «© «© «© «© AWG

Decision of Panel Majority .... A-100

Panel Dissent .......... . A=131

Decree and Majority

Opinion Bp Beamc ....+-+.«-«-e. A201

En Banc Dissent .......... . A=-218

Trial Court Opinion ....... . A=227

Preservation of the Federal Question

Excerpt from Guardian’s

Memorandum In Support of Her

Proposed Findings of Fact and

Conclusions of Law ...... . . A=-317

Guardian’s Exceptions to ss aaa

en@ GE@er . «sec ecee 2 « « « A=320

Excerpt from Guardian’s Memorandum

In Support of Exceptions to

Trial Court’s Opinion and Order . . A-333

Excerpt from Brief For

Appellant in Superior

Court of Pennsylvania ...... . A=-341

Orphans’ Court Division

Court of Common Pleas of Philadelphia

O.C. NO. 3107 of 1987

Estate of CYNTHIA WOJCIECHOWSKI,

an alleged incompetent

DECREE

AND NOW, this ist day of August,

1991, the Exceptions filed by Lorrie

McKinley, Esquire, Guardian ad litem, to

the Order and Opinion of Jamison, J. dated

February 28, 1990 are dismissed, and the

Order is affirmed.

Bruno, J. dissents and files a

dissenting Opinion.

BY THE COURT:

Pawelec, A.J.

Administrative Judge

Lorrie McKinley, Esquire

Guardian ad litem

Exceptant

Marta Engdahl, Esquire

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Orphans’ Court Division

Court of Common Pleas of Philadelphia

O.C. NO. 3107 of 1987

Estate of CYNTHIA WOJCIECHOWSKI,

an alleged incompetent

Before: PAWELEC, ADM. Je, BRUNO,

BONAVITACOLA, JJ. and KLEIN and

GUTOWICZ, Senior Judges

(Specially Presiding)

OPINION SUR EXCEPTIONS

PAWELEC, ADM.J. Aug. 01, 1991

Dolores Wasiak, the mother of Cynthia

Wojciechowski (hereinafter referred to as

Cynthia) filed a petition seeking to have

Cynthia declared incompetent, —sTs

appointed as guardian of the person of

Cynthia and authorization for herself as

guardian to consent to a _ laparoscopic

tubal ligation for Cynthia. After exten-

Sive hearings, the hearing judge granted

the relief requested. Exceptions to the

A =~ 202

decree were filed by the guardian ad litem

appointed by the hearing judge to repre-

sent the interests of Cynthia. They are

presently before the court for disposi-

tion.

In her exceptions, the guardian ad

litem contends that the order and opinion

of the hearing judge contravene the

mandate announced In Re Terwillinger, 304

Pa. Super 553, 450 A.2d 1376 (1983) and

are violative of the constitutional rights

of bodily integrity and reproductive auto-

nomy afforded Cynthia by the Fourteenth

Amendment of the United States Constitu-

tion. In essence, exceptant argues the

petitioner failed to prove by clear and

convincing evidence that laparoscopic

tubal ligation is necessary for the

welfare of Cynthia, that less intrusive

methods of contraception were unworkable,

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and that a tubal ligation is the only

practicable alternative.

Our usual scope of review is deli-

neated in Estate of Dembiec, 468 A.2d 1107

(Pa. Super 1983), at p. 1110, wherein the

court stated:

On appeal, the findings of an

Orphans’ Court Judge who hears testi-

mony without a jury are entitled to

the weight of a jury verdict....This

rule is particularly applicable "to

findings of fact which are predicated

upon the credibility of the wit-

nesses, whom the Judge has had the

opportunity to hear and observe, and

upon the weight given to their testi-

mony."...In reviewing the Orphans’

Court findings, our task is to ensure

that the record is free from legal

error and to determine if the

Orphans’ Court findings are supported

by competent and adequate evidence

and are not predicated upon capri-

cious disbelief of competent and

credible evidence.... However, we

are not limited when we review the

legal conclusions that Orphans’ Court |

has derived from those facts.

(Citations omitted).

However, we note that In Re Terwilli-

ger, supra, the Superior Court stated that

A - 204

on appeal, review in a case of this nature

should be of the broadest scope and the

reviewing court need not be bound by the

inferences or deductions of the hearing

judge. We determine these exceptions in

accord with this direction.

The hearing judge, in her comprehen-

sive opinion, extensively reviewed and

analyzed the testimony and the evidence of

both sides. We see no reason to duplicate

her review and analysis.

For the purpose of the creation of a

self-sustaining document, we reiterate

that the following medical evidence is

uncontested. Cynthia has an emotional and

intellectual age of three to five years.

She suffers from cerebral palsy, scoliosis

and grand mal epilepsy seizures (n.t. pp.

9-12). As a result of her medical condi-

tion, she takes various medications.

A =- 205

Despite the medication, her seizure dis-

order is very tenuous, not very stable and

not easily controlled. According to the

medical testimony, her condition is

irreversible.

Based on Cynthia’s history, the

medical experts were in agreement as to

the detrimental effects of pregnancy. The

medical testimony indicated that there

were several possible theoretical medical

alternatives to prevent pregnancy, but

concluded that the risks were too great to

choose any of these alternatives. The

guardian ad litem failed to present any

contrary evidence in regard to the stated

medical problems and dangers to Cynthia

were she to become pregnant. The social

workers and psychologists who testified

focused on alternative methods of contra-

ception and suggested that constant

A - 206

ee

surveillance would prevent pregnancy. In

the event of an unexpected pregnancy,

abortion or adoption were offered as

possible solutions.

When alternatives were presented to

the medical experts testifying on behalf

of the petitioner, they were rejected as

neither viable nor in Cynthia’s best

interests.

Cynthia’s mother, Mrs. Dolores

Wasiak, was called as a witness. Although

Cynthia’s legal residence is with her

mother, she has resided in a Community

Living Arrangement (hereinafter referred

to as C.L.A.) since she was 12 years old.

Mrs. Wasiak stated that her reason for

filing this petition was that Cynthia is

getting older and is a very affectionate

child with a myriad of medical problems,

A - 207

and that a pregnancy would be very harmful

to Cynthia.

No one has indicated that Mrs. Wasiak

has any interest adverse to Cynthia

throughout these proceedings.

Upon completion of testimony and

after a review of the divergence of

opinion as to whether tubal ligation was

an appropriate method of contraception

herein, the trial judge appointed Dr.

Ronald J. Bolognese as an impartial

witness in this matter. The guardian ad

litem objected to Dr. Bolognese’s appoint-

ment. The appointment of an impartial

medical expert is in accordance with the

findings in Terwillinger. The court per-

mitted petitioner the opportunity to

introduce supplemental evidence of changed

circumstances regarding Cynthia’s

A - 208

Ns re HR AS eettee.

behavioral changes and of a particular

incident which occurred at the C.L.A.

In this regard, the testimony of Mrs.

Wasiak indicated that because of certain

serious behavioral problems of Cynthia, a

behavior modification treatment was insti-

tuted. Cynthia’s Dilantin dosage had been

reduced but had to be restored and then

increased because of two severe seizures.

In addition, in March of 1989, a male

C.L.A. resident was seen leaving Cynthia’s

bedroom. On review, we conclude it was

not only appropriate but necessary for the

trial judge to allow this testimony of

changed circumstances. The court correct~

ly stated that from the date the petition

was filed, Cynthia became a ward of the

court and any information of a substantial

nature which bore upon the prayer of the

petition should be heard by the court.

A - 209

Dr. Bolognese, Chairman of the

Department of Obstetrics and Gynecology at

Pennsylvania Hospital was called as the

court’s impartial witness. Dr. Bolognese

is an obstetrician whose area of specialty

is high risk pregnancy and whose medical

credentials are impeccable. He testified

that in his expert opinion, Cynthia should

never conceive unless her medical condi-

tion drastically changes during her

reproductive age bracket. He ruled out

hormonal therapy (as a contraceptive

means) by daily use of birth control pills

or even weekly ingestion of other types of

medication because of potential mixed

reactions to Cynthia’s seizure disorder.

Dr. Bolognese further stated that the risk

complications arising as result of a tubal

ligation were minimal and that, in fact,

the risk of material death, secondary to

A - 210

ee ee ee I

an abortion, is the same. Dr. Bolognese

further states, however, that in his opin-

ion, the issue inherent in a pregnancy and

in tubal ligation were vastly different.

Mr. McFalls, the Director of Ken

Crest’s residential services, admitted

that the C.L.A.’s policy of checking on

Cynthia every 15 minutes to half hour was

instituted as much for the purpose of

preventing Cynthia from engaging in sexual

activity as it was for monitoring her

seizures.

This court makes no comment upon the

correctness of such an approach. It is

not within the purview of this court upon

review to adjudicate whether sexual acti-

vity should or should not be permissible

for this unfortunate woman. The trial

court reviewed the evidence thoroughly and

A- 211

did not abuse its discretion in reaching

the conclusion stated in the record.

In reviewing the guardian ad litem’s

objections, it appears that the ad litem

has misinterpreted the standard applicable

to the case in question. The issue is not

whether sterilization is the least

restrictive means of birth control in

general, but rather, considering Cynthia’s

medical condition, what type of birth

control provides the least intrusion into

Cynthia’s life and does not subject her to

unnecessary risk of her life or health?

The instant case does not present the

facts which were before the court in

Terwilliger, supra. In Terwilliger, the

court was faced with a situation wherein

the alleged incompetent was 25 years of

age, had already given birth to a child

and was, other than for retardation, an

A= 2:42

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ee ee ee eee ee ee era er

ee eee ee ee

otherwise healthy young woman. The

attending physician could not form an

opinion as to whether or not Ms. Terwil-

liger understood her own sexuality and

suggested birth control pills as an

adequate contraceptive measure. Testimony

also indicated that Ms. Terwilliger lived

with her family, had an IQ of 33, and had

continued to be sexually active. The

court determined that under the circum-

stances, a clear and convincing case had

not been presented which would warrant

sterilization as a means of birth control.

In Terwilliger, at 450 A.2d 1383 et

seq., the court set forth the following

guidelines:

(2) The possibility that the

incompetent person will experience

trauma or psychological damage if she

becomes pregnant or gives birth, and,

conversely, the possibility of trauma

or psychological damage from the

sterilization operation.

A - 213

(3) The likelihood that the indi-

vidual will voluntarily engage in

sexual activity or be exposed to

situations where sexual intercourse

is imposed upon her.

(4) The inability of the incompetent

person to understand reproduction or

contraception and the likely perma-

nence of that inability.

(7) The ability of the incompetent

person to care for a child, or the

possibility that the incompetent may

at some future date be able to marry

and, with a spouse, care for a child.

(8) ~ Evidence that scientific or

medical advances may occur within the

foreseeable future which will make

possible either improvement of the

individual’s condition or alternative

and less drastic sterilization

procedures.

(9) A demonstration that the propo-

nents of sterilization are seeking it

in good faith and that their primary

concern is for the best interests of

the incompetent person rather than

their own or the public’s conve-

nience. (Footnote omitted) Id. at

264, 426 A.2d at 483.

In the case at bar, the trial court

utilized all of the above guidelines in

A- 214

nn Bi

reaching a decision. For Cynthia, the

trauma of sterilization, if any, would be

no greater than the trauma of an abortion

or of giving birth. The trial court was

presented with facts from which one could

conclude that Cynthia had engaged in some

form of sexual activity. It is clear from

the evidence that Cynthia lacks the

ability to understand reproduction or

contraception and it is unlikely that her

medical and/or psychological condition

will change in the foreseeable future. It

is also clear that Cynthia is incapable of

caring for a child, unable to marry, and,

with a spouse care for a child. There was

no evidence to indicate that there is any

medical possibility on the horizon which

would afford Cynthia safe contraceptive

results, less drastic than sterilization,

given her unstable grand mal seizure

A - 215

condition. It is particularly noteworthy

that the last guideline enumerated in

Terwilliger was omitted from the guardian

ad litem’s brief. This case is not an

attempt by a parent to impose steriliza-

tion as a means of contraception on a

mentally retarded but otherwise medically

healthy child. There is no question that

the trial court correctly concluded from

competent evidence that Cynthia’s mother

has only Cynthia’s best interest at heart.

The court’s findings of fact are

fully supported by the record and are

appropriate in light of the physical

problems of Cynthia Wojciechowski. These

facts justify the conclusion reached by

the hearing judge. This conclusion is in

accord with the law as enunciated by our

appellate court. -This is not a matter of

the use of a tubal ligation as a method of

A - 216

contraception where other contraceptive

methods will be effective but rather a

matter of authorizing medical care in

Cynthia’s best interest considering her

many physical infirmities.

Accordingly, the Order of the trial

court is affirmed.

BY THE COURT:

Pawelec, A.J.

Administrative Judge

Orphans’ Court Division

Court of Common Pleas of Philadelphia

ESTATE OF CYNTHIA WOJCIECHOWSKI,

AN ALLEGED INCOMPETENT

No. 3107 of 1987

BEFORE: PAWELEC, A.J., BRUNO,

BONAVITACOLA, JJ., and KLEIN and

GUTOWICZ, Senior Judges

(Specially Presiding)

DISSENTING OPINION

BRUNO, J.

I do not disagree with the hearing

judge’s finding that this woman is incom-

petent. I do not disagree with the

hearing judge’s finding that pregnancy

would be "an unmitigated disaster" for

this woman. I do not disagree that

Cynthia’s mother has what she perceives to

be Cynthia’s best interest at heart. I

dc, however, vehemently disagree with the

conclusion of the hearing judge and of my

colleagues on the court en banc that a

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laparoscopic tubal ligation is in the best

interest of this incompetent.

The entire focus of the proceedings

before the hearing judge seemed to be the

effects of a pregnancy on this woman. As

I said above, I do not disagree with her

finding that a pregnancy would be disas-

trous for this unfortunate woman. How-

ever, there was absolutely no evidence

produced by the petitioner that Cynthia is

or ever was sexually active. There was

some evidence that she was’7 sexually

curious. Given her emotional and intel-

lectual age of three to five years, a

certain amount of sexual curiosity is to

be expected. However, sexual curiosity is

not sexual activity. The hearing judge

placed great emphasis on the fact that at

one time a male patient was seen leaving

Cynthia’s room and after that episode

A ~ 263

Cynthia pointed to her pubic area. It is

ridiculous to say that is evidence of

sexual activity. Cynthia also pointed to

her pubic area when she was being inter-

viewed by a psychiatrist. Obviously, the

psychiatrist did not attempt to have sex

with her.

Rather than focusing on the detri-

mental effects of seinen, the hearing

judge should have focused on protecting

Cynthia from rape and sexual intercourse.

The protection of this woman’s physical

person is the real issue in this case.

Sterilization will not and cannot protect

Cynthia from untoward sexual advances and

abuse. It can only present on the

unwanted results of sexual abuse and

activity, pregnancy. What about the

trauma of rape? What about the death

sentence of AIDS and the horrors of

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syphilis? By placing the sole emphasis on

preventing pregnancy by protecting this

woman’s physical person, the hearing judge

completely disregarded the principles

outlined in Matter of Terwilliger, 304 Pa.

Super. 553, 450 A.2d 1376 (1983).

In Matter of Terwilliger, 450 A.2d

1376, 1383, the Superior Court plainly and

clearly stated that it must be established

by clear and convincing evidence that:

less drastic contraceptive methods, in-

cluding supervision, education and train-

ing are unworkable and detailed medical

testimony must show that the sterilization

requested is the least significant intru-

sion necessary to protect the interest of

the individual." (emphasis in original).

By authorizing Cynthia’s guardian to

A - 221

consent to sterilization, the hearing

judge totally ignored the competent evi-

dence produced by the guardian ad litem

that there are a number of less restric-

tive methods of pregnancy prevention. I

read Terwilliger as requiring that those

less restrictive methods of prevention

must be tried and found wanting before a

court can authorize the sterilization of a

retarded person. There was no evidence

produced by petitioner in this case to

show that other, less drastic contracep-

tive measures have proven unworkable.

This woman’s constitutional rights to

privacy and to bodily integrity are being

totally trampled upon because the hearing

judge and my colleagues are focusing on

the easiest method of pregnancy prevention

rather than the protection of the physical

person of this woman. I find it very

a ~-2a2

discomforting that the hearing judge finds

great comfort in the opinions of the

various British judges of the House of

Lords who permitted the sterilization of

an epileptic teenage woman. I would

hesitate to quote an opinion of the House

of Lords in an issue concerning an

intensely personal constitutional right.

British jurisprudence is not American

jurisprudence. British judges routinely

condone governmental action, e.g.,

detention of individuals without informing

them of the charges against them, which

would be unthinkable in this country.

The hearing judge repeatedly states

that she does not want to adopt "A do

nothing" attitude. I do not suggest that

this Court adopt such an attitude. How-

ever, it is absolutely not necessary to

take the most extreme measure possible

a 222

. a?

when it has not been shown that other,

more reasonable measures are unworkable.

The best medical experts and the best auto

mechanics believe that: "When it ain’t

broke, don’t fix it."

If, based on the facts in this case,

this woman is sterilized by a decision not

her own, I pray that we do not find our-

selves starting down that path followed by

others not too many years ago. A path

that led not only to the sterilization of

the "unfit," but also to death.

Because the hearing judge’s finding |

absolutely contradicts the principles

enunciated in Terwilliger, I would sustain

the exceptions of the guardian and vacate

that portion of the Order authorizing the

guardian to consent to the sterilization.

A - 224

ORPHANS’ COURT DIVISION

COURT OF COMMON PLEAS OF PHILADELPHIA

No. 3107 of 1987

ESTATE OF CYNTHIA WOJCIECHOWSKI

Alleged Incompetent

ORDER

AND NOW, this 28th day of FEBRUARY,

1990, upon consideration of the petition

to adjudicate Cynthia Wojciechowski an

incompetent and to appoint Dolores Wasiak

guardian of her person, and following

extensive hearings thereon, and upon

consideration of the briefs submitted, it

is hereby Ordered and Decreed that

Cynthia Wojciechowski is adjudicated

an incompetent.

Dolores Wasiak is appointed

guardian of the person of Cynthia

Wojciechowski.

A- 225

Said guardian of the person is

hereby authorized to consent to a

laparoscopic tubal ligation for Cynthia

Wojciechowski.

A = 226

ORPHANS’ COURT DIVISION

COURT OF COMMON PLEAS OF PHILADELPHIA

No. 3107 of 1987

ESTATE OF CYNTHIA WOJCIECHOWSKI

Alleged Incompetent

OPINION

JAMISON, J.

Dolores Wasiak has petitioned the

court to have her daughter, Cynthia

Wojciechowski (hereinafter Cynthia or

Cindy), adjudicated an incompetent, and to

have herself appointed as guardian of the

person of Cynthia to authorize such medi-

cal or surgical procedures as are neces-

sary to prevent pregnancy. The petition

alleges that Cynthia suffers from severe

mental retardation, and that "a tubal

ligation is the only practical means of

contraception."

A @- 227

The Court appointed Lorrie McKinley,

Esquire, guardian ad litem "to represent

the best interests of the alleged incompe-

tent" in connection with the pending

petition. Ms. McKinley, an instructor in

Clinical law at the University of Pennsyl-

vania Law School, is associated with the

Penn Legal Assistance Office.

Prior to the hearing, the Court

consulted with counsel, reviewed with them

the guidelines set forth in Matter of

Terwilliger, 304 Pa. Super. 553, 450 A.2d

1376 (1982), and suggested that they

retain experts of the highest caliber.

The guardian ad litem took an early

stance that tubal ligation or any form of

contraception is not in Cynthia’s best

interest and, at present, education and

Supervision are the preferred methods of

preventing sexual activity, rape, or

A - 228

Pe

conception. The guardian’s cross-exami-

nation of petitioner’s witnesses and

direct examination of her witnesses

reflect this adversarial posture.

Because of the formidable responsi-

bility of applying principles of law,

ethics and medical practice to the facts

of this case, the testimony will be

reviewed in detail.

I. Review of Evidence

Cynthia Wojciechowski is a 20 year

Old mentally retarded woman, who suffers

from scoliosis, cerebral palsy and grand

mal epilepsy. She is mute, has a very

limited ability to sign, and has an emo-

tional asd intellectual age of three to

five yeers. It is undisputed that her

mental and physical disabilities are

irreversible.

aA =~ 229

Cynthia was present on the first day

of the hearings. She waved to the court

with her "Kermit the Frog" puppet each

time her name was mentioned. Otherwise,

she seemed to be oblivious to the proceed-

ings. Counsel agreed that Cynthia had no

concept of the nature of the hearings and

understood nothing other than her name.

Cynthia remained in the courtroom and was

quite restless throughout the testimony of

the first witness, Ernest F. Keller, who

reported on the high incidence of crime,

particularly rape, in the City of Phila-

delphia. It was agreed it would be pre-

ferable that Cynthia not be present when

her mother and the other witnesses testi-

fied. Additionally,it was obvious that it

would be less distracting and emotionally

painful for her mother to testify out of

Cynthia’s presence. Accordingly, Cynthia

A - 230

Ih Pic Pi a Ly ll ale sla

was not present at any hearing other than

her meeting with the Court in chambers.

At a later stage of the proceeding,

the Court met with Cynthia, in the

presence of counsel and her mother, who

served as an informal interpreter for

Cynthia’s signing and gestures. Communi-

cation with Cynthia was difficult at best.

Cynthia, who appeared anxious to please,

signed "Yes" in response to virtually

every question.

Cynthia was easily distracted, and

showed little change in mood throughout

the session. She concentrated primarily

on a Walkman tape. She signed that she

had brought her nephew, Ricky, into this

world, that girls differ from boys in that

women carry purses. In response to ques-

tioning, she signed, without differentia-

tion, that she would like to have a baby,

A =~ 231

that she would also like to have a puppy,

that babies can be bought in a store and

that here brother and sister-in-law had

bought her nephew, Ricky. When asked to

write her name, she wrote her first name.

She willingly hugged everyone in the roon,

including a male court clerk who was

called in to test her response to an

unknown male. When asked how "babies get

in tummies," she pointed to a necklace on

a doll. She paid scant attention and

drifted from any area on which the Court

tried to focus her attention. She was

able to write "dog" when shown a picture

of the Judge’s puppy and able to distin-

guish between statuettes of a dog and a

rabbit. She was extremely suggestible,

compliant and anxious to please. Her

affect was that of an uncommunicative pre-

school child. It would have been futile

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4 — ee ee eee eee oe ee eee ee

and well beyond her ken to have discussed

reproduction and contraception with her.

She demonstrated affection for and depen-

dence on her mother who had considerable

ability to respond to and communicate her

expressions.

As the first witness, Dolores Wasiak,

natural guardian and custodial parent of

Cynthia, related that she was divorced

from Cynthia’s father, Frederick Wojcie-

chowski, in 1978. She has since re-

married. Mr. Wojciechowski consented to

and joined in Mrs. Wasiak’s petition, but

did not participate in these proceedings.

Petitioner and Mr. Wojciechowski have two

other children, a son who is five years

older than Cynthia, and a daughter three

years older, neither of whom has any

developmental problem.

A > 233

Cynthia’s legal residence is with her

mother and step-father at 3060 Edgemont

Street in the Kensington section of Phila-

delphia. She has resided in a community

living arrangement (CLA) located at 4311

Sentner Street, operated by Ken Crest

Centers, Inc., since she was 12 years old.

Mrs. Wasiak stated her reason for

filing the petition was that Cindy is

getting older and is a very affectionate

child, with "a lot of medical problems,"

for whom pregnancy would be very harmful.

In recounting Cynthia’s medical

history from infancy, the petitioner was

tearful, visibly upset and strained. She

recalled that her delivery was difficult,

and that Cynthia was born with an eye

infection which necessitated placement in

a newborn isolation unit. Mrs. Wasiak

noticed that the infant had excessive

A= 234

ee eae ee

blinking of the yes. When Cynthia was

three months old, she suffered her first

seizure which lasted for about an hour.

Throughout her first year, she had fre-

quent seizures for which she was treated

at Episcopal and St. Christopher’s

Hospitals. At 15 months, she underwent

successful eye surgery under general

anesthesia for correction of a strabismus.

Thereafter, she had follow-up care at St.

Christopher’s Hospital, where, at age two

and a half, she was enrolled in a program

for developmental therapy. At age four,

she went to the Ken Crest Early Interven-

tion Program, and at age five, she

attended a public school program for the

severely and profoundly impaired. Cynthia

has never spoken, although as a baby she

babbled, and at about age four and a half,

She made vowel sounds. As a young child,

A =- 235

she was very stubborn and had frequent

temper tantrums. She often refused to eat

or to sit down at the dinner table and

"disrupted the whole family." Mrs. Wasiak

consulted several physicians and a psycho-

logist regarding Cynthia’s behavior

problems. Counselors recommended that

Cynthia be placed in a group home and, at

age 12, she was placed in the CLA at which

she presently resides. The home is shared

by one other female and three male resi-

dents who range in age from 17 to 22.

Cynthia attends a life skills program

a Northeast High School and on alternate

weeks she attends Swensen Skills Center.

Transportation is provided by school bus.

It was anticipated that upon graduation,

she will go to a sheltered workshop.

Every other week, Mrs. Wasiak takes

Cynthia to her home from Friday evening to

A - 436

Sunday evening. On those week-ends,

Cynthia often visits at her brother’s

home. She looks at books, plays with

toys, particularly Sesame Street’s "Big

Bird" and plays with her five year old

nephew, Ricky. Cynthia also _ spends

holidays with her family.

Cynthia has learned to dress and feed

herself, but she is far from self-suffi-

cient. She will continue to live in a

group home so long as the funding is

available. She takes her anti-seizure

medication under supervision. She

responds to music, likes to dance and

attends dances at the CLA. She enjoys

watching television, particularly the

Sesame Street programs. She has a signing

vocabulary of about 50 signs.

Several recent incidents have in-

creased Mrs. Wasiak’s concern for her

A - 237

—e

daughter’s safety. On one occasion, dur-

ing an outing with her Ken Crest group at

Penn’s Landing, Cynthia had been left

alone in a public bathroom. On another

occasion, during a visit to the CLA, Mrs.

Wasiak observed a young male resident

standing outside Cynthia’s bedroom door

while Cynthia was in her room changing.

Overall, Mrs. Wasiak is pleased with

the care Cynthia receives at Ken Crest and

finds it to be the best placement present-

ly available. However, she has genuine

concerns about continued adequate govern-

ment funding for the CLA, frequent staff

changes, and inconsistencies in their

level of training and ability. With the

recent cutbacks in government support for

the retarded, Mrs. Wasiak is apprehensive

that the CLA may be phased out.

A- 236

—eeeaeaaaa _

Cynthia has had hospitalizations and

Surgery under general anesthesia for

dental work, ear wax removal, extraction

of wisdom teeth and a gingivectomy. None

had have untoward results.

Mrs. Wasiak observed that Cynthia,

who has had a great deal of pain through-

out her young life, is spunky and is able

to let others know when she is in pain.

She is an extremely affectionate girl who

hugs and kisses strangers, as well as

people whom she knows. She seems to crave

physical contact with others and will

touch people even if they do not approach

her.

According to her mother, Cynthia has

regular menstrual periods. She is able to

change her own sanitary pads, but doesn’t

know when to stop wearing them. She once

wore a pad for a full month.

B © 239

Mrs. Wasiak does not believe that

Cynthia has been sexually active. Mrs.

Wasiak has spoken to medical professionals

about various methods of contraception for

Cindy.

Mrs. Wasiak stated that Cynthia did

not understand menstruation, reproduction,

intercourse, conception, or fertility, and

was not cognizant that certain parts of

her body should not be touched by others.

Mrs. Wasiak testified that because of

her seizure disorder, Cynthia should not

be left alone for periods of more than

one-quarter to one-half hour at Ken Crest.

She reported one incident, however, in

which Cynthia had a seizure and fell from

her bed while unattended.

Mrs. Wasiak, who herself has had a

laparoscopic tubal ligation, is of the

opinion that sterilization by minilapa-

A - 240

roscopy is the best and safest contracep-

tion for Cynthia. Although Mrs. Wasiak

agreed that Cynthia could participate in

sexuality training, she was doubtful that

Cynthia could understand the program. She

is concerned that Cynthia continues to

embrace strangers after being told that

such behavior is inappropriate.

Marna Sternbach, M.D., Cynthia’s

treating physician since September 1986,

testified that she see Cynthia at German-

town Hospital for regular checkups for her

seizure disorder and cerebral palsy. In

November 1987, Cynthia was hospitalized

for seizure disorder related tegrital

toxicity, difficulty in walking, nausea,

vomiting, and possible pneumonia. Cynthia

also sees a neurologist on consultation.

Her medication in 1988 was Phenobarbital

90 milligrams two times a day, 300

A - 241

milligrams of Dilantin at night and 800

milligrams of Tegrital four times a day.

Although the medication generally controls

the seizures, viral illnesses or any

infection may promote a seizure. Without

medication, she could have a fatal status

epilepticus.

Dr. Sternbach reported that Cindy is

unable to give a medical history or

discuss pregnancy. When questioned as to

possible methods of birth control, she was

of the opinion that barrier methods would

not be appropriate; that because of pain

and possible pelvic infection, an intra-

uterine device (IUD) would be too risky

for Cindy; and that oral contraceptives

are not recommended because of possible

side effects. Dr. Sternbach added that a

pregnancy would be harmful for Cynthia’s

mental and physical health. She

A - 242

recommended a tubal ligation as_ the

simplest most definitive procedure for the

prevention of pregnancy with the fewest

risks for Cindy. Dr. Sternbach explained

that the medications Cindy takes are all

teratogenic and each could cause congeni-

tal abnormalities in a fetus.

Dr. Sternbach reported that in her

practice she had one case of a mentally

retarded young woman living in a super-

vised CLA who became pregnant. The

pregnancy was not discovered until about

the twentieth week and the patient under-

went a mid-trimester abortion.

Dr. Sternbach characterized a tubal

ligation through a laparoscope as a

"pretty simple procedure" which takes 15

minutes and is generally done on an out-

patient basis. In Cindy’s case, an

A. 243

overnight stay and general anesthesia

would probably be required.

Melvin S. Heller, M.D., a board

certified psychiatrist, testified as an

expert witness for the petitioner. Dr.

Heller’s credentials include a degree from

Tufts Medical School in 1948, a residency

in child psychiatry at Yale University

from 1950 to 1954, and a fellowship in

child psychiatry at the Child Study Center

of the Institute of Pennsylvania Hospital.

He has been in private practice in adult

and child psychiatry since 1957, and has,

for over 30 years, been Clinical Professor

of Psychiatry and Director of the Insti-

tute of Law & Health Sciences at Temple

University. He has, inter alia, served a

Chief Psychiatric Consultant to the Court

of Common Pleas of Philadelphia and as

Director of the Division of Forensic

A - 244

“ CN at BNE 2 te Sem GE STEEL FR re mee ee

Psychiatry, Office of Mental Health of the

Commonwealth. Dr. Heller’s credentials

reflect a longstanding interest in

patients’ rights and mental health law.

Dr. Heller examined Cindy at the

offices of Dr. Jerome Knast, a psycholo-

gist who is fluent in sign language. He

also visited her and the staff at the Ken

Crest CLA. Each evaluation lasted over an

hour and a half. Dr. Heller also reviewed

Cynthia’s medical, psychological and

school records.

After reviewing Cynthia’s childhood

developmental history, Dr. Heller testi-

fied that her pre-school records revealed

that she was moderately severely retarded

with an 1.Q. of about 30 to 32. School

reports indicate that Cynthia is "not

educable but trainable," that she is quite

socially isolated and that her cognitive

A~ 443

language skills are fixed at age three and

a half.

Based upon the medical records, Dr.

Heller testified that Cynthia’s tonic

clonic seizures, accompanied by stiffening

and shaking, occur about once or twice a

month and are an element of her cerebral

palsy. Cynthia has some atrophy of the

brain and her mutism is caused by organic

brain damage. She has a partial paralysis

of the left side (stable left hemiparesis)

with residual awkwardness of the left arm

and an awkward gait. Dr. Heller concluded

from the gynecological report of Dr. Nancy

C. Czarnecki, that Cynthia’s hymen is not

intact and she does not have a virginal

tract.

Dr. Heller comment on the various

pejorative connotations of the word

"sterilization." "It is a legal term...

A - 246

CC Ss

Neteeain Ss!"

De ie hate A wiki La OPN a eh An iA” Nala dN ala ser sate

Lee Le AL a

a very generic term and includes a number

of conditions, some of which are remini-

scent of gas chambers, like the removal of

the ovaries, or the surgical removal of

the male testicles." He noted that tubal

ligation, on the other hand, and various

other contraceptive methods, although

called sterilization, are not steriliza-

tion in that sense.

Dr. Heller sharply disagreed with the

opinion in the written report of Elissa

Lewin, an expert witness for the guardian

ad litem, that since Cynthia is never

alone, "a less restrictive and more posi-

tive approach to avoiding rape and

pregnancy would be programming (sic) for

appropriate social skills."

Dr. Heller was of the opinion that

Cynthia has no ability to grant or refuse

informed consent or exercise reasonable

A - 247

judgment. He characterized her as a

"young woman who is substantially retarded

and who is emotionally fixated about the

age of four or five...she is not even at

the pre-school emotional level. She is a

very childish, endearing, snugly kind of a

person, a touching little girl...."

Dr. Heller was pessimistic about

Cindy’s chances of improvement. He con-

cluded that she is going to be a child and

remain a child vulnerable to molestation

for the rest of her life. He is convinced

that "birth control is necessary in this

highly vulnerable person and it cannot be

dismissed on the erroneous and unchecked

conclusion that she is under constant

watch because of her epilepsy...."

Dr. Heller reasoned further that

increased security and more stringent

monitoring would be detrimental to Cindy:

A - 248

"Ken Crest is responding as well as

they can but this custodial approach

to contraception at best is going to

make this child/woman an asexual

sheltered individual with no chance

to relate. She is going to continue

in this highly dependent, abnormal

situation, which is not in her best

interest. She is going to become

increasingly a depressed vegetable.

Her only hope is perhaps to be able

to relate to other human beings,

peers, appropriately, even within the

parameters of how two or three or

four year old children relate to each

other, and this is very, very

important."

Dr. Heller related that he has had

substantial experience and "spent a pro-

fessional lifetime prescribing supervision

for people." Yet, on occasions where he

has written orders in state hospitals for

one on one supervision as suicide precau-

tions, or in the correctional systen,

where there is maximum supervision, he has

nevertheless found people hanging and

women in the county prison system who get

pregnant.

a ~~ 248

In Dr. Heller’s judgment, even the

most heroic and skilled efforts to provide

Cynthia with "programming for appropriate

social skills" as recommended by Ms.

Lewin, is futile. "You can’t teach a

person appropriate social skills if they

can’t communicate with you."

It was Dr. Heller’s opinion that

pregnancy and childbirth would be

traumatic for Cynthia. He hypothesized:

"What would happen if Cynthia became

pregnant and despite her seizures and

hemiparesis had a normal delivery and

a healthy infant? She could not be a

competent mother and would have no

ability to care for the child. Is

the child adoptable? Can Cynthia

sign permission for the adoption?

Cynthia is going to be traumatized.

She could not be separated from her

Kermit the Puppet without kissing it.

She is not going to be separated from

a baby without being terribly, ter-

ribly traumatized."

Dr. Heller wholeheartedly endorsed

tubal ligation for Cynthia. In his consi-

dered opinion, contraception by tubal

A = 280

ARES oS on oe i Nia edb y jee

ligation is:

",.. the least intrusive, least

physiologically harmful approach,

which is reversible in the large

majority of cases... and which would

in no way alter her physiology, her

periods, her ovarian functions, her

secondary sexual characteristics, her

feelings of femininity, or interfere

with her ability to relate to

others."

Dr. Heller was skeptical of the

guardian’s theories of "least restrictive

alternative," "socialization" and "norma-

lization" as applied to Cynthia. In his

judgment, these concepts and policies are

fine in theory; they are not effective in

practice. Dr. Heller is convinced that

Cynthia’s learning ability is so impaired

by irreversible neurological damage that

her prognosis for learning substantially

more than she knows now is not favorable.

Petitioner called Jerome F. Knast,

Ph.D., a psychologist who had evaluated

Cynthia through formal testing and

A = 231

behavior observations and reviewed her

medical and psychological records. Dr.

Knast stated her IQ to be 52 and deter-

mined her adaptive behavior composite at

the equivalent of ages five to eight. He

reported that her poor picture arrangement

sub-test indicates that she has great

difficulty in understanding social clauses

and consequences of behavior. She is not

able to anticipate and plan appropriate

actions in social situations. On the

PPVT-R test, Cindy’s oral receptive

vocabulary was found to be only at the

level of a three year old.

Dr. Knast related that Cynthia twice

displayed instances of inappropriate

behavior with him. During a test in which

Cynthia was attempting to communicate a

story, she lifted her blouse, pulled down

the waistband of her pants to show him her

A= 252

dictiiacs. aac

POM A Ea I tes oe AMS tte Mw

navel and laughed inappropriately.

Earlier, she had reached over to tickle

him on the stomach a couple of times and

to touch his nose.

Dr. Knast believed that Cynthia is

unable to give informed consent and that

pregnancy would create a potential health

risk for her. He concluded that sterili-

zation would be in Cynthia’s best interest

and "should be necessary for her habilita-

tion program for her to function in a more

autonomous manner." He further recommend-

ed that Cynthia be given additional commu-

nication skills training and socialization

activity in a total communications

environment with other developmentally

disabled teenagers and young adults and

should participate in social activities of

other CLA’s.

'

Dr. Knast determined that Cynthia’s

mental retardation, which will not

improve, interferes with her ability to

learn sign language. He found that:

"Cynthia is very interested in

activity that is of a sexual nature

like the tickling and the touching of

myself...likes to sit in people’s

laps, male and female, and be cuddled

and rubbed...she sometimes will slap

men on their buttocks. She is very

sensual and she wants physical con-

tact. She seems to really make

physical contact with other people

even if they don’t approach her

first, and I think she is not aware

of being seductive or flirtatious or

of a foreplay kind of nature."

He was of the opinion that it would take

at least two to three years to develop the

communication skills that are the first

requisite for behavior modification train-

ing.

Dr. Knast stated that sterilization

will improve Cynthia’s level of

rehabilitation and will lead to greater

autonomy for her. She could "develop more

A - 254

normalized kind of dating and pre-dating

kind of behavior as far as being able to

dance, to hold hands, to kiss, to touch;

but it might allow some more of those

kinds of activities to take place for her

without the concern that it might lead to

pregnancy." He doubted that a combination

of education and supervision as proposed

by the guardian ad litem can be effective

in preventing pregnancy for Cynthia.

H. Michael Seitz, Jr., M.D., a board

certified gynecologist and obstetrician,

an associate professor of obstetrics and

gynecology at the University of Pennsy1l-

vania School of Medicine since 1970 and a

staff physician of the Hospital of the

University of Pennsylvania, also testified

as an expert for the petitioner.

Upon review of Cynthia’s medical

records, Dr. Seitz was of the opinion that

A= 255

she was ovulating and could become preg-

nant; that a pregnancy would be detri-

mental to her grand mal epilepsy which

requires toxic levels of anticonvulstants

to maintain her in a seizure free condi-

tion; that statistics indicate she might

be more seizure prone during pregnancy and

that pregnancy for her would be extremely

traumatizing emotionally. In the event

she became pregnant, a therapeutic abor-

tion would be extremely traumatic.

Abortion also carries the risks of

perforation, hemorrhage and infection.

Should a child be born, there is at least

a four-fold greater chance that the child

would inherit the epileptic condition and

a twelve percent greater change of major

congenital defects. If Cynthia were to be

on the high dosage of seizure medication

she presently requires during a pregnancy,

A - 256

Coe ere ee aoe

ci ee

she could spontaneously abort or have a

premature birth, both of which are trau-

matizing to the patient. Dr. Seitz

believes that if Cynthia’s seizure medica-

tion were withdrawn, "she would have

frequent seizures which would be exceed-

ingly dangerous to the fetus, as will as

the maternal organism."

Dr. Seitz recommended a modified bi-

lateral laparoscopic tubal ligation with

high frequency current as the most

effective, least restrictive method of

prevention of pregnancy. He described it

as a safe, simple, out-patient procedure,

following which the patient usually

returns home in a couple of hours and is

back to work within 72 hours. He noted

"one of the important things about it is,

although it is considered to be a perma-

hent sterilization, it really is not."

a ™. 237

The rate of reversibility is upwards of

80%. The risk of failure is one in 300.

Other risks are rare. The mortality rate

is three per 100,000 and generally related

to the anesthetic.

Dr. Seitz ruled out all other means

of contraception, including barrier

methods such as male condoms, diaphragm,

or foam, because Cynthia lacks compliance

or comprehension capabilities and because

of the failure rate of 15 to 25%. Like-

wise, oral contraceptives are inappropri-

ate, because of the risks of thromboembo-

lic disease, hypertension, possible

carcinogenicity and relatively short-tern,

rather than lifelong coverage.

With respect to other possible

contraceptives, Dr. Seitz reported that

the sole intrauterine device currently

available is progestasert. a

A =- 258

Pe ee ee ee a ee a pty

unsuitable for Cynthia because it has to

be replaced each year and has the risks of

infection, perforation and abnormal bleed-

ing.

Dr. Seitz explained that laparoscopic

electrocoagulation involves the insertion

of a telescope into the belly button with

a distal light source, identifying and

burning a segment of the Fallopian tubes

so that they are closed. Should the

patient decide to reopen the tubes, they

surgeon can often cut out the obstruction

and successfully bring the two open ends

together again.

Dr. Seitz concurred with the opinion

of Dr. Sternbach that if Cynthia were to

have a laparoscopy, it would be better for

her, because of her seizure condition, to

enter the hospital the day before the

procedure and remain as an in-patient the

a = 289

day after. Cynthia would probably be

given sodium pentathol with a little gas

anesthetic. After adequate pre-operative

preparation and medication, she would not

be at higher than average risk. Following

laparoscopic coagulation, she would be out

of bed in two hours and could resume light

activities within 72 hours. Tylenol or a

little codeine would be given for pain

relief.

Dr. Seitz advocated this procedure as

the ideal and least intrusive method of

birth control for Cynthia. Although "it

is more invasive than popping a pill, it

is, under the circumstances, the most

desirable."

Dr. Della Grossman, who holds a

doctorate in education in counselling

psychology from the University of Pennsyl-

vania, was called as an expert by the

A - 260

ae ee eae a ee nee kee ae

at tod San rt oA alse” pines

guardian ad litem. Dr Grossman found that

Cynthia has a severe neurological deficit

and she determined Cynthia’s full scale IQ

to be 48. Other test results indicate

that Cynthia functions on an intellectual

and social level of a pre-pubescent child.

In her written report, Dr. Grossman con-

Cludes: "Cindy is currently living in an

environment so closely supervised that the

possibility of either voluntarily engaging

in sexual activity or being exposed to

forced sexual activity is extremely

improbable."

Dr. Grossman stated that "since

Cynthia is not sexually active, has no

interest in becoming so, and is so closely

supervised, she is not at risk of becoming

pregnant and does not need birth control."

In Dr. Grossman’s judgment the recom-

mendation of Drs. Heller and Knast that

A - 261

ee ~

Cynthia be sterilized were not consistent

with the "least restrictive alternative"

doctrine, because they did not allow for

any less restrictive alternatives, such as

other forms of contraception and abortion.

She might recommend sterilization for

someone with a higher level of retardation

than Cindy who lives freely in the commu-

nity. Dr. Grossman disagreed with Dr.

Knast’s opinion that sterilization could

increase Cynthia’s level of habilitation

because she would continue to have the

same level of supervision necessitated by

her seizure disorder.

Dr. Grossman also _ stated that

sterilization was inconsistent with the

least restrictive alternative in terms of

dealing with the fear of attack on

Cynthia, because sterilization cannot

prevent rape, nor can it prevent the

A=- 262

trauma and emotional consequences of such

an attack.

Dr. Grossman thought that if someone

made sexual advances to Cindy, she would

communicate what happened.

The guardian next called Elissa

Lewin, a licensed psychologist whose

specialty is "the sexuality of the mental-

ly retarded." Ms. Lewin recalled that she

had administered a basic sex education

program to Cynthia when she was 12 and 13

years old and that Cynthia had been able

to progress through the program. Although

that training program provided identifica-

tion of basic body parts and Cynthia then

could differentiate between male and

female, she cannot presently make that

differentiation and has little knowledge

of body parts.

a ~ 263

Ms. Lewin, who performed two assess-

ments of present sexual knowledge on

Cynthia, concluded that she is not

sexually active, has no awareness of sex,

and her affectionate gestures are not

indications of sexual interest. In her

"Sexuality Evaluation Regarding Steriliza-

tion Report," Ms. Lewin noted that when

she asked permission of Cynthia to touch

her crotch, Cynthia signed "OK" and

emphatically "Yes." Ms. Lewin expressed

her concern about Cynthia’s vulnerability

to being victimized and noted that the

staff believes that if Cynthia was left

alone, she would go with anyone who was

nice to her, that there is a chance of

sexual abuse by a staff person, but that

her risk of sexual abuse or involvement is

"nominal."

A - 264

Ms. Lewin determined that

Cynthia’s sexual activity is limited to

masturbation, that she understands the

concept of masturbation and was able to

demonstrate it. During a discussion of

intercourse, Cynthia gestured to Ms. Lewin

that she engages in intercourse "all the

time" and with every male she knows (her

father, staff and CLA residents). She

found that Cynthia has an early adolescent

awakening of feelings and fantasies, is

keenly aware of her sexuality and femi-

ninity and uses both whenever possible,

even where inappropriate. She engages in

inappropriate touching, especially with

strangers.

Ms. Lewin was of the opinion that the

least restrictive alternative for Cynthia

would be a training program which would

make her less vulnerable. She thought

a * 265

that Dr. Heller, in applying the principle

of least restrictive alternative, did not

fully consider the circumstances of

Cynthia’s life, nor the options available

to her. In her opinion, sterilization

could never be considered the least

restrictive alternative without consider-

ing other available alternatives, such as

supervision and education.

Donna Fey, who holds a bachelor’s

degree in Psychology and Communications

from the University of Hawaii, was called

by the guardian ad litem as an expert in

sexuality and disability. Ms. Fey had not

met Cynthia, but based her opinion upon an

interview with Cynthia’s mother and her

review of Ms. Lewin’s sexuality report.

Ms. Fey stated that since Cynthia is

not sexually active and has no inclination

to be so, and because she is in no real

A - 266

|

danger of sexual abuse, she should not be

sterilized. She added that sterilization

may, in fact, place Cynthia in greater

danger of sexual abuse, because sterilized

people are safer targets than those who

may become pregnant. She suggested that

if Cynthia became pregnant, she should

take the morning after pill. She stated

that there would be less risk for Cynthia

to have an abortion than to take birth

control pills and that sterilization only

addresses the pregnancy risks, not the

abuse risks.

To prevent sexual abuse, Ms. Fey

recommended educational programs for

Cynthia. She believed that Cynthia was a

good candidate for these programs, includ-

ing "circles" and "good touch, bad touch"

which are specifically designed for per-

sons with her level of functioning.

A= 267

Ms. Fey testified that other means of

birth control were a possibility for

Cynthia and that Cynthia would be able to

communicate her discomfort if she exper-

ienced any side effects from the pill.

She thought that Norplants, which are

hormonal inserts placed under the skin and

last for up to five years, could possibly

be used for Cynthia. (Norplants are not

legal in the United States.) In her

opinion, an abortion within 12 weeks is a

safer procedure than sterilization.

James McFalls, the Director of

Residential Services at Ken Crest, who is

a behavior specialist, also recommended

the behavior modification theory of birth

control for Cynthia. He is not involved

in day to day management of Cynthia’s CLA,

but serves in a supervisory capacity. Mr.

McFall is confident that Ken Crest homes

A - 268

"provide adequate supervision and training

and have an adequate on-call system." Ken

Crest has policies for dealing with

sexuality, staffing, application of the

least restrictive alternative, client

abuse, as well as policies for supervision

and training. With respect to the policy

on sexuality, he believes the principles

of least restrictive alternative and

normalization dictate that the need should

match the intervention: that if there is

minimal need, there should be minimal

intervention. Accordingly, contraception

should be ordered only if there was a

compelling need for contraception; steri-

lization only if there was a compelling

need for sterilization.

Mr. McFalls predicted that if Cynthia

were to have a tubal ligation, it would

have no effect on her placement and

A =- 269

treatment, would not cause her = any

psychological harm and in no was affect

her adjustment to her present placement.

At this point in the proceedings, the

petitioner and guardian litem had submit-

ted all of the testimony which they

originally intended to offer and prepared

briefs in support of their positions. An

amicus curiae brief was also submitted by

Pennsylvania Protection and Advocacy,

Inc., which espoused the position of the

guardian ad litem.

Following the Court’s review of the

brief and upon consideration of the high

degree of scrutiny mandated by Terwilli-

ger, the Court deemed it appropriate to

appoint Dr. Ronald J. Bolognese as an

impartial medical expert in the field of

obstetrics and gynecology.

EE

In addition, petitioner requested the

Court to reopen the record to admit

testimony concerning Cynthia’s behavioral

changes and an incident which occurred at

the CLA following the end of the first set

of hearings.

Accordingly, the Court scheduled ad-

ditional hearings to receive petitioner’s

evidence and the testimony of the Court

appointed expert. |

At the supplemental hearing, Mrs.

Wasiak testified that early in 1989

Cynthia exhibited serious behavior

problems; she was self-abusive, biting and

scratching herself, uncooperative and

aggressive toward others. After consul-

tations with a neurologist and a neuro-

psychologist, certain behavior modifica-

tion programs were instituted, and her

dosage of Dilantin was decreased from 300

ma 272

milligrams to 250 milligrams daily. How-

ever, in May, she suffered a seizure, was

hospitalized, and the Dilantin then was

increased to 300 milligrams daily. On

June 21st, She again had ae violent

seizure, fell on the street, cut the area

over her right eye, and was scraped and

bruised. The dosage of Dilantin was then

increased to 400 milligrams daily. In

June, 1989, she graduated from a retarded

trainable class and it was anticipated

that she would enter a sheltered workshop

program in October or November, 1989.

Mrs. Wasiak reiterated her motives if

filing the petition. She testified that:

"[I] just wanted to see her have a

life. I am not trying to stop her

from any kind of life. I want to do

the best I can to protect her from

any new problems happening in her

life."

Under cross-examination, Mrs. Wasiak

noted that Cynthia’s problem behavior had

A@~ 272

Bid tee > dit sbi ed

eogea ath

decreased somewhat from two or three times

a week to about once every two weeks. To

the best of her knowledge, there had been

no one on one education for Cynthia. She

related that there had been substantial

turnover in the Ken Crest staff during the

last year.

Mrs. Wasiak further testified that

she was advised of an incident on

March 13, 1989, at about 9:30 P.M., when

Francis, a male resident of the CLA, was

found leaving Cynthia’s bedroom. Cynthia

indicated to Wilhelmina Brooks, the staff

worker, that Francis had touched her on

her breasts, her arm or waist, and her

pubic area three times. At her next home

visit two weeks later, Cynthia, related

this incident to her mother without

visible agitation.

A - 273

Wilhelmina Brooks, the resident

advisor and the staff supervisor at

Cynthia’s CLA, was called as a witness by

the guardian ad litem. She testified that

on the night of the incident, she came up

from the basement, heard a noise on the

monitor from Cynthia’s room, and noticed

the light was out in the upstairs hallway.

As she switched the hallway light on, she

saw Francis running from Cynthia’s room.

According to Ms. Brooks, Cynthia was

visible upset and signed that Francis had

touched her and pointed to her breasts,

waist and public area. Her nightgown had

been pulled up.

Monica Scott, presently the program

manager at Cynthia’s CLA, is a psychology

Student at Temple University who has

received most of her training over the

past year at Ken Crest. She sees Cynthia

aA = 274

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daily, teaches her household chores and

independent living skills. She observed

that Cynthia is very friendly, lovable and

affectionate. At times, she is stubborn

and non-compliant. She notices that

Cynthia is presently acting somewhat more

appropriately for her age. During the

period when Cynthia was excessively self-

abusive, she rewarded her when some

improvement was shown by approving home

visits with her mother. Attempts have

been made to redirect somewhat her

affectionate manners with strangers. She

reported that Cynthia’s mother is not as

Strict with her as the CLA staff in

discouraging immature behavior.

Cynthia is currently involved in a

Sign language program, a sexual behavior

program, and nutrition and exercise pro-

grams. Ms. Scott stated that plans are

A - 275

being made to move Cynthia and her room-

mate to an all female residence. These

plans are quite tentative, since a site

has not yet been located.

The guardian ad litem objected

strenuously by letter prior to the hearing

and at the hearing to the testimony of Dr.

Bolognese, the court appointed medical

expert. Inasmuch as Terwilliger suggests

that the Hearing Judge call impartial

experts, and the Court has the right and

duty to control the proceedings, the

testimony was received subject to the

objection, and the objection is now over-

ruled.

Dr. Bolognese, a graduate of Prince-

ton University and the University of

Pennsylvania School of Medicine, is board

certified in obstetrics and gynecology and

sub-boarded in maternal/fetal medicine.

A= 276

He is Chairman of the Department of

Obstetrics and Gynecology at Pennsylvania

Hospital. He has written approximately

100 articles and three textbooks in the

field of diagnostic laparoscopy, sterili-

zation, therapeutic abortion and the care

of the high risk patient in obstetrics and

gynecology. Before his examination of

Cynthia, he reviewed the records which had

been forwarded to him by the guardian ad

litem, including the brief of the Amicus

Curiae, the guardian’s Memorandum in

Support of Proposed Findings of Fact and

Conclusions of Law, a letter from German-

town Neurological Associates, a sexual

evaluation regarding sterilization from

Paul Volosov Associates, the Germantown

Hospital records of admission on Noven-

ber 23, 1987 for seizure disorders, the

record of the Audiology Department at

a= are

Temple University, and the report of the

Clinical audiologist from that institution

dated March 15, 1988. He did not review

the testimony of Dr. Heller. Dr. Bolog-

nese testified that:

"Cynthia’s general demeanor was very

pleasant, very friendly, almost

coquettish, during her visit. She

was very cooperative throughout both

my discussing briefly with her mother

what I planned tc do as far as the

examination and during her personal

examination. She seemed to antici-

pate the pelvic portion of the exami-

nation. And on several occasions, as

I did a general physical, beginning

with listening to her lungs and

checking her thyroid function and

examining her breasts, she _ kept

pointing to her genital area as if

implying to me that I should get to

that portion of the examination."

He reported that Cynthia is a well

developed female with normal pelvic find-

ings. "I think the one feature that was

of some surprise to her mother was that

Cynthia does not seem to be virginal."

Cynthia tried to sign with him several

a = 278

Ee ee Fetes AS hea Ach Srna

times - "more demonstrative signs, rather

than word signing." He said that she

easily tolerated the speculum examination

and showed no discomfort since he was not

examining a virginal vagina. His conclu-

sion was:

"I think clearly she requires some

form of contraception . . . one would

be a method of contraception that

would not worsen her general medical

status, largely her epileptic seizure

disorder, and still provide her with

a degree of safety that would be as

close to 100% as possible.

The second question would be whether

or not, on a long term basis, her

condition is going to be such that

she could carry a pregnancy without

great risk to herself and the fetus

and be capable of handling that child

atter birth. .. =.

I don’t think that any thing has sur-

faced in her records to suggest that

her general medical condition will

improve to the point that five years

or ten years from now that her medi-

cal condition and her general mental

abilities will be significantly

improved to change that prognosis."

A =~ 279

Dr. Bolognese characterized Cynthia

as "a substantial epileptic" based upon

the medication that she is taking. If she

were to become pregnant, there would be

considerable risk for congenital malforma-

tions, as weli as mental and learning

disorders of the newborn.

Dr. Bolognese is concerned that

Cynthia would be at increased risk for

seizure disorders during the course of a

pregnancy. Repetitive seizures would

potentially increase injury to herself and

would place the fetus again at risk. The

high doses of medication would quite

possible have to be raised. A physician

would be reluctant to allow a labor for

her because of the time and medication

involved, and might choose a Caesarean

section which is a major operative proce-

dure. During pregnancy, epileptics have a

A - 280

eect enum mente + eS

greater seizure incidence due to fluid

accumulation in the brain or changes in

vascular supply.

Speaking as an obstetrician whose

area of specialty is high risk pregnancy,

he believes that Cynthia should never con-

ceive unless her medical condition dras-

tically changes during her reproductive

age bracket. Nothing in his gynecological

examination suggested that she is anato-

mically incapable of becoming pregnant or

bearing a child.

He was of the opinion that the ideal

method of contraception for Cynthia is one

that will provide her 100 percent protec-

tion. He ruled out hormonal therapy by

daily use of birth control pills or

injectable Delaluten at weekly intervals

because of mixed reactions to her seizure

disorder. He considered Depo-Provera

A - 281

unsatisfactory because it may cause liver

abnormalities and Cynthia is taking drugs

that require normal liver functions. The

doctor stated that, "The experience of

going through a temporary method that

requires additional medication to prevent

her pregnancy does not seem justified."

He suggested that the best approach would

be a method that would provide her close

to 100 percent protection and proposed a

laparoscopic tubal sterilization. Dr.

Bolognese described the operation, which

is done under general anesthesia, and is

generally an outpatient procedure, in some

detail:

"In a normal patient without the com-

plications of Cynthia, the patient is

discharged about two hours after sur-

gery. The procedure is immediately

protective and is essentially 100%.

In Cynthia’s circumstances, because

of her epilepsy or seizure disorder,

she would require hospitalization the

night before to appropriately modify

A= 262

:

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4

4

her medications, and then hospitali-

zation after the procedure to again

monitor her medications and seizures

following the surgery."

Dr. Bolognese has performed 800 to

1,000 laparoscopies. He prefers his tech-

nique to the mini-laparoscopy described by

Dr. Seitz. Although the mini-laparoscopy

may be reversible, Dr. Bolognese’s method

is not. In the remote event Cynthia would

ever opt to have a child, she could do so

by in vitro fertilization.

When asked about the suggestion by

witnesses for the guardian ad litem that

abortion would be an alternative if

Cynthia were to become pregnant, Dr.

Bolognese replied that Cynthia probably

would not know the symptoms of pregnancy

early and a diagnosis might not be made

during the first or second trimester. The

risk of maternal death, secondary to an

abortion of one in 100,000 cases, and from

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laparoscopic tubal sterilization is the

same. Accordingly, if Cynthia were to

become pregnant and the pregnancy was

terminated by abortion, she would have

experienced the same risk involved in a

laparoscopy and the basic problem of

prevention of pregnancy would not have

been addressed.

After a laparoscopy, there is no

change in the woman’s menstrual cycle, her

psychological affect or feelings of

femininity. In Dr. Bolognese’s judgment,

the risks inherent in a pregnancy and

those of a tubal ligation are "worlds

apart." The laparoscopy is relatively

simple, whereas a pregnancy, complicated

by seizure disorder and the necessity of a

major surgical procedure, such as a Caesa-

rean section and a longer recuperation

A - 284

period, are far more dangerous. and

invasive.

Dr. Bolognese is not aware of any

medical or scientific research that,

within the foreseeable future, would

result in some alternative or long-term

method of birth control which might be

appropriate for Cynthia.

In cross-examination, Dr. Bolognese

did not agree that education, training and

supervision, as proposed by Drs. Lewin and

Grossman, would be effective in preventing

possible victimization or involuntary

intercourse. He stated:

"I guess the only comment I had in

reviewing the records and the testi-

mony that preceded me was the posi-

tion proposed that the likelihood of

this young lady becoming pregnant was

extremely small because of the cir-

cumstances in which she lives and

that because of the severity of her

disorder, someone was checking on her

every 10 to 15 minutes. Perhaps I am

a pessimist, but I truly can’t

believe that over the course of the

A = 285

next 20 years of her reproductive

cycle that that feasibility will be

there all the time, and, secondly,

much can be achieved in 10 to 15

minutes that can cause a pregnancy,

so I would be somewhat pessimistic

that that approach will work. Now,

whether she is capable of being

educated and trained to decipher

advances, again, I think that is sort

of out of my province, but I don’t

understand how one can be trained to

prevent rape."

Dr. Bolognese stated that he would

not be surprised if Cynthia would volun-

tarily engage in sexual intercourse. In

his opinion, Cynthia has a normal level of

male/female interaction or interplay and

she could well be sexually active.

In response to many of the questions

posed by the guardian ad litem with

"assumptions of possibilities," Dr.

Bolognese said, "Anything is possible."

Dr. Marna Sternbach, Cynthia’s

primary treating physician, was recalled.

Dr. Sternbach testified that after

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Pane aa! sf ee ee ee eee

rs Bedi

Cynthia’s serious behavior problems had

surfaced in early 1989, she consulted with

Cynthia’s neurologist, who at first was

reluctant to reduce the dosage of Dilan-

tin. He agreed to do so in March or April

and started her on Xanax (a tranquilizer)

as well. She reported the increases in

dosages of Dilantin after Cynthia’s

seizure in late May, and after the severe

seizure in June. Since June 1989, Cynthia

has been on 400 milligrams of Dilantin

daily and has remained seizure free. Dr.

Sternbach characterized Cynthia’s seizure

disorder as “very tenuous and not very

stable or easily controlled." Dr. Stern-

bach confirmed the conclusions set forth

in reply to an inquiry from Ms. McKinley,

the guardian ad litem, in a letter from

Karen Hartnett and kevin Hepler, M.D.

dated March 7, 1988, that:

& = 267

"a tubal ligation performed under

general anesthesia would pose the

same risks as for the general popu-

lation which are considered relative-

ly minor .. . birth control pills

can cause a multitude of side effects

ranging from nausea, depression,

headaches, weight gain, etc., up to

and including deep venous thrombosis

and stroke. I do not feel Cynthia

has the mental capabilities to

express herself adequately regarding

the many side effects... Cynthia’s

mental status is insufficient to

understand the meaning of pregnancy

and (she) would be incapable of

raising a child.... Furthermore, a

pregnancy could potentially increase

her seizure activity and the seizure

medication she takes could potential-

ly have some harmful effects on the

fetus...general anesthesia would

probably not complicate the seizure

disorder."

Dr. Sternbach believes that for

Cindy, "a pregnancy would be devastating."

The increased dosage of Dilantin makes her

worry even more about the effects of preg-

nancy on Cynthia’s seizures and the

possibility of fetal malformation. Yet,

if the dosage of Dilantin were reduced, in

the event of pregnancy, Cynthia would be

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subject to more frequent seizures. No

good choice would exist.

A notation appears in Dr. Sternbach’s

records of Cynthia’s visit on September

19, 1989 - "Caretaker notes increased

kissing involvement with boyfriend." Dr.

Sternbach concluded that the most reason-

able and best form of birth control for

Cynthia would be a tubal ligation.

The guardian ad litem recalled James

McFalls, who stated that plans were being

made to located additional Ken Crest

housing and to have the women at the

Sentner Street CLA moved to an all female

residence where there would be increased

supervision and which would provide a

"less intense situation and be more age

and socially appropriate." The annual

cost for each resident ranges from $50,000

to $80,000. In Mr. McFalls’ judgment,

A - 289

Cindy’s use of signs was greatly improved

(Mr. McFalls is not fluent in signing).

He stated that Cynthia recognized him and

greeted him with a handshake. Since her

tantrum and self-abusive behaviors are

under some degree of control, he stated

that more emphasis will be placed on good

social interaction. Her present vehavior

program is based on "gentle teaching

philosophy, non-adversive techniques."

Mr. McFalls continues to be of the opinion

that sterilization is not the least

restrictive alternative. He thinks that

Cynthia’s progress over the past year has

provided her with the material to become a

more independent person and to control her

own destiny a little bit more as she moves

from a school situation to a work situa-

tion. Fe

Mr. McFalls was critical of Dr.

Bolognese’s testimony because he thought

Dr. Bolognese did not take into account

the administration of medications and

other controls that the CLA provides, and

that his recommendation of a tubal liga-

tion was "based just on mental retar-

dation."

On cross-examination, Mr. McFalls

stated Cynthia’s mental intellectual age

ranged between months to age seven. He

believes that she is more intelligent and

her adaptive abilities are higher than her

test scores. He agreed that the policy of

checking on Cynthia every 15 minutes to

half hour was as much for the purpose of

preventing sexual activity as for moni-

toring her seizures.

The Court has examined Cynthia’s

medical records which are extraordinarily

A= 291

extensive for such a young woman. They

indicate, inter alia, "grand mal epilepsy,

frequent seizures, heavily medicated."

She is "retarded in the trainable cate-

gory." She has been treated for

vaginitis, pneumonia, and urinary tract

infection. IN 1968, she suffered 8

seizures; in 1970, 35; in 1972, 52; in

1973, 40; in 1974, 61; in 1975, 38; in

1976, 9; in 1977, 36; in 1978, 52; in

1979, 40; in 1980, 40. In 1987, it is

noted that she was receiving "toxic levels

of Tegritol."

II. Discussion and Conclusion

The Court finds, upon consideration

of the voluminous evidence, that Cynthia’s

interest and future welfare will best be

served by appointing her mother guardian

of her person and authorizing her to con-

sent to contraception by tubal ligation.

a = 292

This finding is based not on assump-

tions and possibilities, but rather on the

existing realities of Cynthia’s physical

and mental condition and her present and

anticipated lifestyle. It is further

founded upon a balancing of the risks and

burdens attendant upon guaranteeing abso-

lute protection from pregnancy, against

the risks and uncertainties of "doing

nothing," or reliance on hypothetical,

impractical and theoretical concepts.

The realities, as established by

clear and convincing evidence, are:

(1) Cynthia is an affectionate,

coquettish, vulnerable and endearing young

woman. She is severely retarded and

functions on an intellectual and emotional

level of a three to five year old child.

She has been characterized as "trainable"

but not educable. Cynthia is unable to

A = 293

speak and suffers from scoliosis, cerebral

palsy and a severe seizure disorder. Her

grand mal epilepsy has been controlled by

high, potentially toxic, doses of Dilan-

tin, Phenobarbital and Tegritol. She must

rely on staff at her CLA or her mother to

administer the drugs.

(2) Cynthia does not understand con-

traception, intercourse, or pregnancy and

birth. She lacks the capacity to make a

decision about, or give an informed con-

sent to, any medical treatment, including

contraception and tubal ligation.

(3) Cynthia’s physical and mental

conditions will not improve. Examinations

by competent gynecologists indicate that

she is presumptively capable of bearing a

child, and she will probably be fertile

for at least another 20 years. Her hymen

is not intact, and it is possible that she

A - 294

has engaged in sexual intercourse which

has not resulted in pregnancy. She

exhibits the normal sexual drives and

awareness for her physical age.

(4) Pregnancy would be an unmiti-

gated disaster for Cynthia. The prospects

or regulating or withdrawing her seizure

medication, as well as the trauma atten-

dant on the alternatives of abortion, a

Caesarian section under general anesthe-

sia, or labor and natural childbirth, and

the inevitable separation of the newborn

from Cynthia, are disturbing to contem-

plate. The high probability of fetal

abnormality and the life threatening risks

attendant on pregnancy, including

increased seizure disorder, status

epilepticus and major surgery dictate that

permanent birth control and maximum

protection should be afforded to Cynthia.

A= 295

(5) Tubal ligation, a relatively

minor surgical procedure, is the only

practicable birth control method which can

insure against pregnancy. Other methods,

although less restrictive alternatives,

are not appropriate for Cynthia. She is

already heavily medicated. The possible

negative interaction of the pill or other

hormonal drugs with her present medication

should be precluded, as should additional

supervised administration of drugs. More-

over, oral contraceptives to be taken

daily for the next 20 years have serious

potential side effects. Cynthia is not a

fit candidate for barrier methods, since

these must be self-monitored.

(6) A sheltered environment does

not afford sufficient protection against

sexual advances. Cynthia may "volun-

tarily" succumb to overtures which she

A - 296

perceives as affection or may be the

victim of an attack. Furthermore, there

is no certainty that her environment will

remain as protective as it is presently.

The plans for "education" and supervision

advanced by witnesses for the guardian ad

litem, though well intentioned, presuppose

ideal circumstances in which unlimited

funds exist to provide maximum individual

education, training and supervision.

Reality falls far short of such an ideal.

Furthermore, no amount of supervision

offers total protection. As Dr. Bolognese

stated: "Much can be achieved in 10 to 15

minutes that can cause a pregnancy."

The guardian ad litem chooses to

minimize actualities of which the Court is

mindful. For example, Dr. Sternbach

described a mentally retarded resident of

a supervised CLA, whose late discovered

A- 297

pregnancy necessitated a third trimester

abortion. Dr. Heller also testified about

pregnancies in women under maximum super-

vision in the county prison system. There

are frequent media accounts of rapes in

nursing homes and convents.

This Court decided the distressing

case of Estate of Joyce K., (O.C. Phila.

No. 3343 of 1982), involving Joyce, a

profoundly retarded 33 year old woman at

Ebensburg State Hospital, a maximum

security facility for the mentally im-

paired in Cambria County. She and another

patient were raped and impregnated in that

institution. The Court appointed Joyce’s

mother as her guardian to consent to a

second trimester abortion.

In Estate of Barbara G. (O0.C. Phil.

No. 3039 of 1989), Dr. Jeffrey Buchhalter,

Professor of Neurology at the University

A - 298

:

aad ie a

of Pennsylvania, and a neurologist at

Children’s and Graduate Hospitals testi-

fied:

", . . It is a matter of common know-

ledge that every so often someone

like Barbara with significant mental

retardation, with oor without a

seizure disorder, becomes pregnant

either from a staff member of from

another patient."

(7) Despite the admonition in Ter-

williger that only the disabled person’s

interests are involved, one cannot dis-

regard the emotional and economic toll of

such a case on the family, the caretakers,

counsel, experts in medicine and psycho-

logy, the court and its personnel. To ask

that the Court review what, if any, form

of contraception is appropriate, every

year or two is to deny any remedy, as the

process is extremely burdensome.

It would be patently unfair to wait

another two years, and other subsequent

A - 299

intervals, to rehear this case. The Court

is convinced that the matter has been com-

prehensively and exhaustively researched

and presented. To postpone the decision

further would serve no one’s interest.

(8) The simplistic alternative pro-

posed by the guardian ad litem -- "Do

nothing" -- is untenable.

As Dr. Heller stated when questioned

by the guardian ad litem about least

restrictive alternatives:

"One should try less restrictive

alternatives but not capriciously,

not with the idea that one can go

back to the drawing board if it

doesn’t work, because there are

timely intervals of intervention

beyond which we have missed the boat

- - » « We need to avoid our tendency

to rely too heavily on what we call

benign neglect because neglect is not

always benign."

The amicus curiae, who has filed a

brief on behalf of the Disabilities Law

Project, has also taken the position that

A - 300

es

ha Reina SOG itive sinha

sterilization is not in Cynthia’s best

interest. The amicus nonetheless urges

the Court to utilize the doctrine of

substituted judgment as an analytical

method for deciding this case. Although

this doctrine does not appear to be the

teaching in Terwilliger, the New Jersey

Supreme Court in In Re Grady, 85 N.J. 235,

426 A.2d 467 (1981), said:

"We believe that an appropriate court

must make the final determination

whether consent to. sterilization

should be given on behalf of an

incompetent individual. It must be

the court’s judgment and not just the

parents’ good faith decision that

substitutes for the incompetent’s

consent." (426 A.2d at 475).

In substituting this Court’s judgment

for that of Cynthia, who since birth has

lacked capacity to make a choice, the

Court must assess the wants and needs of

Cynthia and determine what is in her best

A = 301

interest. (In the Matter of Moe, Mass.

555, 432 N.E.2d 712 (1982)).

As to the "Do nothing" alternative,

the Court is without power to enforce the

close supervision, education and main-

tenance that Cynthia requires. Several

years ago, Cynthia had the "good touch-bad

touch" training. She had completely

forgotten these lessons by 1988, although

the program is once again being adminis-

tered. It is beyond the reach of a Court

to order further training, to assure

funding for such programs, or to ensure

that Cynthia will understand and utilize

those lessons. Further, the possibility

that she might be raped or, in her own

way, acquiesce in or submit to sexual

intercourse cannot be ruled out. Since

she cannot communicate, how would anyone

know if and when she had intercourse? In

A - 302

the event she were to become pregnant,

assuming that abortion is still legal, how

could it be ascertained that the pregnancy

was safely within the first trimester?

How would Cynthia respond to the bodily

changes of a pregnancy -- the nausea and

morning sickness, the movements of the

fetus, the pain and discomforts of labor

and delivery? What psychological damage

or trauma will result from the pregnancy

or birth, or the termination of the

pregnancy? How can the effects of her

anti-convulsant medication or a seizure on

the fetus be predicted? Assuming, against

great odds, a safe delivery and a healthy

infant, who would adopt the child? There

are over 25, 000 young children in Phila-

delphia requiring foster care. What paint

would take the child of Cindy and an

unknown father?

A - 303

How comfortable can a Court be which

makes the easy decision to "do nothing"?

Admittedly, on any given day there is

a greater probability, assuming that she

continues to be closely supervised, that

Cynthia will not become pregnant. How-

ever, the petitioner’s fears and concerns

that she might are not imaginary.

The decision to sterilize Cynthia

rests on the advice, opinions and clear

and convincing evidence of her attending .

physician, a psychiatrist, two gynecolo-

gists, and a psychologist, all of whom are

highly qualified and concerned. Each

believes that it is in her best interests

to be protected from pregnancy, and

recommends that the optimum method of

contraception for Cynthia is a tubal

ligation. All are confident that the

risks are minimal, and that other

A - 304

ae hina ONAN tobe aan Ornate ne AOL Ee hited

alternative contraceptive methods are not

only less reliable, but possibly harmful,

given her seizure condition. Further, in

the purely hypothetical and implausible

event that Cynthia would in the future

choose to have a child, 75% of tubal liga-

tions by mini-laparoscopies are rever-

sible, according to Dr. Seitz, and in

vitro fertilization would be an option,

according to Dr. Bolognese.

If the doctrine of substituted judg-

ment were applicable, this Court could not

delude itself that its choice would be

Cynthia’s choice. Cynthia has never had

the ability to formulate or express a

meaningful choice. Nor is the Court

convinced that a judge, rather than the

incompetent’s mother, a zealous guardian

ad litem, or the many experts in psycho-

logy, psychiatry, gynecology, and related

A = 305

disciplines who have expressed differing

opinions will make the most compassionate

and considered choice. The Court has

reviewed over a score of opinions from

various jurisdictions, as well as law

review and medical journal articles.

Although safeguards and guidelines are set

forth, there is little definitive law. No

reference could directly dictate the best

interests of the vulnerable, fragile,

unique individual who is Cynthia

Wojciechowski.

The Terwilliger court’s warning that

the interests of the parents and society

should play no part in the decision is

questionable. Rarely has this Court

observed such pain and devotion as was

manifested by Dolores Wasiak, Cynthia’s

mother, both in direct examination and

under harsh cross-examination. It is

A - 306

apparent to the Court that the petitioner

is acting in good faith and solely for the

protection and best interests of her

daughter. The Court fails to find a

conflict of interest between Cynthia and

her mother, or between Cynthia and a

caring and protecting society.

Ms. Wasiak’s desire to let Cynthia

have as much autonomy and normalcy as

possible, but beyond that to protect and

shield her to the greatest extent possible

is commendable. As it is appropriate that

a fit parent of a five year old child

should be the principal decision maker

about the care and welfare of the child,

it is similarly appropriate that a parent

of an adult child, who, because of a

disability functions as a five year old,

should be the principal decision maker for

that child. In the opinion of this Court,

A - 307

the decision making should be primarily

that of the parents and their chosen

physicians and counsellors, subject to the

review of the Court.

The paramount right and prerogative

of a parent to make such decisions is

supported by Professor Elizabeth Scott,

Associate Professor and Director of the

Center for the Study of Children and the

Law at the University of Virginia School

of Law. In her comprehensive commentary,

"Sterilization of Mentally Retarded Per-

sons: Reproductive Rights and Family

Privacy;" Duke Law Journal, Volume 1986,

806, she concludes, at page 865:

"The desire to correct the abuses of

the past is admirable. We should

only take care that in pursuing this

goal, we do not create a new set of

problems for the future... . The

law’s objectives are best met by

leaving the sterilization decision to

the retarded person who is competent

to make her own reproductive choices

with only as much intervention as is

A - 308

necessary to facilitate her deci-

sions. For retarded persons who

cannot make their own decisions,

parents - not courts - are the best

surrogates."

(9) The decision to authorize a

tubal ligation for Cynthia has nothing to

do with the doctrines related to compul-

sory eugenic sterilization, or the specter

of Justice Holmes’ anachronistic statement

in Buck v. Bel], 274 U.S. 200 (1927) that

"three generations of imbeciles are

enough." This is not an instance of

involuntary sterilization based on fear

that Cynthia’s disabilities will be

inherited by her offspring. On the con-

trary, considering her family history and

medical uncertainty as to genetic trans-

mission of seizures or organic brain

damage and retardation, it cannot be

predicted that Cynthia’s potential off-

spring would be impaired solely on a

A - 309

genetic basis. The risk of fetal abnor-

mality is not the critical consideration

in reaching the conclusion to permit the

tubal ligation. Questions of eugenics,

public policy, societal interests and

basic civil rights of retarded persons

other than Cynthia Wojciechowski are

wholly irrelevant to these proceedings.

(10) Tubal ligation is a simple,

minimally invasive low risk, permanent and

virtually 100 percent reliable method of

contraception.

Before tubal ligation procedures were

perfected in the 1930’s, hysterectomy was

the only method of permanent female steri-

lization. Surgical sterilization in women

has changed dramatically in the past 40

years. From 1950 to 1980, the number of

tubal ligations increased from three

million to more than 13 million, and

a = 310

~

Nast TL cet i Seve Pik SET walk ca ll ie CM ea nll de LAL Dias Sorel

during the period 1970 to 1980, an

estimated 5,526,000 women, ages 15 to 54,

underwent tubal sterilization procedures

in the United States, in non-federal

short-stay hospitals. (See: The Number

One Birth Control Method Worldwide, Sexual

Medicine Today, February 1981, p. 11;

ductive Age, United States, Update for the

1979-1980; Morbidity and Mortality Weekly

Report, Volume 32 No. 3 SS.)

The American College of Obstetricians

and Gynecologists Committee on Technical

Bulletins (ACOG Technical Bulletin No.

113, February 1988) reports:

"It is estimated that over the past

decade, 800,000 to 1 million or more

sterilization operations have been

performed yearly in the United

States."

Doctors Seitz and Bolognese report

that the health risks, trauma and

a = 333

psychological damage attendant upon

sterilization are minimal compared to the

risks and trauma of abortion, pregnancy

and delivery. As Professor Scott has

commented, "Physicians may generally be

relied on to recommend the treatment that

best promotes the patient’s welfare with

minimal risks." :

Dr. Knast, the psychologist called by

the petitioner, as well as all the physi-

cians who testified, agree that steriliza-

tion would lead to greater autonomy and

normalization for Cynthia. Even Mr.

McFalls, director of Ken Crest, conceded

that much of Cynthia’s supervision was

motivated by the effort to avoid sexual

activity, as much as to observe possible

seizures.

The eloquent opinions of the British

judges in the case of Re B (2 All ER, 2

A - 312

=

5

we

ee SS Pe PES

yen

WLR 1213, FLR 314) decided by the House of

Lords on April 30, 1987, are impressive.

The facts are strikingly similar. "B" was

a mentally handicapped and epileptic 17

year old girl who had a mental age of five

or six. She had no comprehension of

reproduction, was unable to give informed

consent, and would be unable to care for a

child. She lived in a local authority

home and spent weekends at her mother’s

home. Five Judgments were issued by the

Lords affirming the family court’s order

of sterilization by occlusion of the

fallopian tubes. Lord Hallsham of St.

Marylebone held:

"To talk of the ‘basic right’ to

reproduce of an individual who is not

capable of knowing the causal con-

nection between intercourse and

childbirth, the nature of pregnancy,

what is involved in delivery, unable

to form maternal instincts or to care

for a child

-" (under-

lining supplied).

a =~ 313

In agreeing that a tubal ligation was

appropriate, Lord Bridge of Harwick

observed:

". . .This case has nothing whatever

to do with Eugenic theory or with any

attempt to lighten the burden which

must fall on those who have the care

of the ward. It is concerned, and

concerned only, with the question of

what will promote the welfare and

serve the best interests of the

ward."

These eminently logical and sensible

expressions of the British Court prompt

this Court to express its skepticism about

the reasonableness of the opposition of

the guardian ad litem to the tubal liga-

tion.

Judicial proceedings for the authori-

zation of sterilization are extraordi-

narily difficult, time consuming,

expensive and stressful to all concerned.

Cynthia’s mother is of modest means. Her

counsel has expended enormous amounts of

A - 314

time on this matter, as has the guardian

ad litem who serves without compensation.

The prospect of serial proceedings as

various improbable alternatives are tried

and discarded simply because of their

appeal to the over-zealous libertarian

mocks the judicial process.

The basic human right to reproduce is

meaningful only when such procreation is

the result of informed choice. Certain

retarded and mentally impaired individuals

may be capable of making such a choice and

their right to choose must be safeguarded.

Because of organic brain damage and retar-

dation, Cynthia is incapable of making

Such a choice. Thus, the loss of choice

is the loss of an illusory right only.

Her welfare and best interests are best

promoted by providing maximum protection

against pregnancy.

A- 315

Accordingly, the petition to appoint

Dolores Wasiak guardian of the person of

Cynthia Wojciechowski to consent to her

sterilization by tubal ligation is

granted.

__Jamison /s/

DATED: February 28, 1990

A- 3i6

PHILADELPHIA COUNTY

COURT OF COMMON PLEAS

ORPHANS’ COURT DIVISION

NO. 3107 of 1987

Estate of CYNTHIA WOJCIECHOWSKI,

Alleged Incompetent

GUARDIAN’S MEMORANDUM IN SUPPORT OF

HER PROPOSED FINDINGS OF FACT AND

CONCLUSIONS OF LAW

introduction

On September 4, 1987, Delores Wasiek

petitioned this court for an order

appointing her as guardian over the person

of her daughter, Cynthia Wojciechowski,

for the purpose of consenting to sterili-

zation by tubal ligation on her daughter’s

behalf. On October 30, 1987 the court

appointed the undersigned as Guardian Ad

Litem to represent the best interests of

Ms. Wojciechowski in this proceeding.

Five hearings were held at which testimony

for and against the propriety of the

A - 317

proposed sterilization was taken. The

case now stands ready for decision.

It is respectfully suggested that the

present record does not support the re-

quest for sterilization and that there-

fore, the petition should be denied.

Petitioner has failed to establish by

clear and convincing evidence that steri-

lization is necessary in order to advance

the best interests of Ms. Wojciechowski as

required by Matter of Terwilliger, 304 Pa.

Super. 553, 450 A.2d 1376 (1983). The

unrebutted evidence concerning Ms. Wojcie-

chowski’s life circumstances make sterili-

zation a far greater intrusion than

necessary to protect her from pregnancy.

As such, sterilization would unconstitu-

tionally impinge upon her right to bodily

integrity and her right to reproductive

autonomy. For these reasons and the

A - 318

reasons that follow, an order authorizing

sterilization would be inappropriate, and

the request for it should be rejected.

1. Terwilliger and The Governing

Legal Standards

Proposed sterilizations of the men-

tally retarded in Pennsylvania are strict-

ly governed by Matter of Terwilliger, 304

Pa. Super, 553, 450 A.2d 1376 (1983).

Recognizing the constitutional implica-

tions which sterilization has for a

mentally retarded person, the Pennsylvania

Superior Court took pains in Terwilliger,

a case of first impression in the Common-

wealth, to "ensure that when sterilization

is sought, the incompetent’s rights are

jealously guarded." Id., 450 A.2d at

1382. That court held that no steriliza-

tion could be ordered without clear and

a 329

a A Ae ne a A

convincing proof that it is in the best

interest of the mentally retarded person.

This standard cannot be satisfied without

strict proof that "sterilization is the

only practicable means of contraception,

i.e., all less drastic contraceptive

methods, including supervision, education,

and training are unworkable." Id., 450

A.2d at 1383. Furthermore, testimony must

show that "the sterilization procedure

requested is the least significant intru-

sion necessary to protect the interests of

the individual." Id.

Although Terwilliger was the first

official pronouncement by a Pennsylvania

court in recent years on the sterilization

issue, the decision was consistent with

those of courts from other states in which

the issue had been analyzed and standards

developed. These cases were premised upon

A - 320

two separate aspects of the constitutional

right of privacy -- the right to bodily

integrity and the right of procreative

choice. See e.g., Matter of Moe, 385

Mass. 555, 432 N.E.2d 712 (1982). In Re

Grady, 85 N.J. 235, 426 A.2d 467 (1981).

Matter of CDM, 627 P.2d 607 (Alaska 1981);

North Carolina Association of Retarded

v. No ina, 420 F.Supp.

451 (1976). Recognition of these rights

on behalf of the mentally retarded coin-

cided with belated societal acknowledge-

ment that the retarded are entitled to the

same basic civil and constitutional rights

as other citizens, and changing views con-

cerning the capabilities of the retarded

as well. By the 1970’s, the negative

stereotypes which previously governed our

treatment of the retarded had been re-

placed with a developmental approach which

a * 33

WE

recognized the potential of every retarded

person to grow, develop and learn. See

generally Macklin & Gaylin, Mental

Retardation and Sterilization (1981).

Principles of normalization, which dic-

tated that to the greatest extent possible

the retarded person should be treated as

if no handicap existed, and the closely

allied doctrine of least restrictive

alternative, through which normalization

principles were implemented, became the

keystones of service delivery to the

mentally retarded community. See gen-

erally, Turnbill, The Least Restrictive

alt hive: Brinein} a:

(1981). 9 They were further reflected

9 These principles have been adopted

by both the Pennsylvania Legislature and

the Pennsylvania Supreme Court for all ‘

matters relating to the mentally retarded

in this case. In Re Schmidt, 494 Pa. 86,

A = 382

SRT al SS ethers. tas

not only in sterilization decisions

nationwide, but in other cases involving

the care, treatment, and education of the

regarded. See e.g., Youngberg v. Romeo,

457 U.S. 307 (1982); Pennhurst State

School & Hospital v. Halderman, 451 U.S. 1

(1981), 612 F.2d 84 (3d Cir. 1979), 446 F.

Supp. 1295 (E.D. Pa. 1977); Rennie v.

Klein, 462 F. Supp. 1131 (D. N.J. 1978),

modified and remanded, 653 F.2d 836 (3d

Cir. 1981). See also, In Re Schmidt,

Supra.

This result was not only consistent

with prior sterilization decisions, but

was required by the dictates of the Four-

teenth Amendment to the United States Con-

429 A.2d 631 (1981); Mental Health Proce-

dures Act, Act of 1976, July 0 [sic], P.L.

817, No. 143, § 101, 50 P.S. § 7101.

a ~ 3243

Ne NE ne,

stitution as well. Terwilliger recognized

the importance of procreational freedom,

even for those mentally retarded persons

unable to choose between reproductive

alternatives. Clearly, where infringement

upon constitutional rights is at stake,

the least drastic alternative to achieve a

particular purpose must be utilized.

Shelton v. Tucker, 364 U.S. 479 (1960).

See _ also, In Re Schmidt, supra (least

restrictive alternative governs decisions

affecting the mentally retarded in Penn-

sylvania).

The United States Supreme Court, too,

has made clear that where educational or

Supervisional alternatives can reduce a

mentally retarded person’s need for bodily

restraint, the Fourteenth Amendment re-

quires that such methods be pursued before

more restrictive alternatives are insti-

A - 324

tuted. The right to bodily integrity of

course, was firmly embedded in the common

law ?° and has long been recognized as

one of our most sacred constitutional

rights. Justice Brandeis referred to it

as "the right to be left alone -- the most

(

comprehensive of rights and the right most

valued by civilized men." Olmstead v.

United States, 227 U.S. 438, 478 (1927).

Freedom from arbitrary invasions of bodily

integrity and personal security are at the

core of the liberty protected by the Due

Process Clause. Vv. eo, 457

U.S. 307 (1982). They are implicit in the

- See generally Cantor, "A

Patient’s Decision to Decline Life Saving

Treatment: Bodily Integrity Versus the

Preservation of Life", 26 Rutgers L. Rev.

228, 236 (1973). See also In Re A.C., 533

A.2d 611 (1987); In Re Gardner, 534 A.2d

947, 951 (Maine, 1987); Matter of Conroy,

486 A.2d 1209 (N.J. 1985). Matter of Moe,

Supra; In Re Guardianship of Grant, 747

P.2d 445 (Wash. 1988); Matter of Welfare

of Colver, 660 P.2d 738 (Wash. 1983).

A = 325

hc

Fourth and Ninth Amendments as well, and

are deemed to be fundamental. See gen-

erally "Federalism and Fundamental Rights:

The Ninth Amendment", 38 Hastings Law J.

305 (1987). See also, Scott v. Plante,

532 F.2d 939, 946 n.9 (1976); Runnels v.

Rosendale, 499 F.2d 733, 735 (9th Cir.

1974); Matter of Quinlan, 355 A.2d 647

(N.J. 1976). The right to bodily inte-

grity is not dependent, of course, upon

intellectual capacity, but is an inherent

aspect of personhood not diminished in any

way by mental incompetence. Youngberg;

see_also, Brophy v. New England Sinai

Hospital, 497 N.E.2d 626 (Mass. 1986).

The U.S. Supreme Court addressed this

issue in Youngberg _v. Romeo, supra, in

which the issue presented involved the

restrictiveness of a mentally retarded

man’s program at Pennhurst State School

A - 326

and Hospital. Nicholas Romeo, who had

I.Q. of 8 or 9, was constantly placed in

physical restraints which caused him to

hurt himself and left him open to abuse by

other patients. Mr. Romeo’s mother sued

Pennhurst, alleging that its treatment of

her son violated his right to be free from

bodily restraint, and arguing that with

appropriate education Mr. Romeo would re-

quire far less restrictive treatment. The

Supreme Court required training in order

to protect Mr. Romeo’s liberty interests

in safety and a minimum of physical re-

straint, since with appropriate education

his behavior could be improved, enabling

him to participa%e in the therapeutic

community under less restrictive circum-

stances. Id., 457 U.S. at 319.

This principle is just as applicable

in the sterilization context, as Terwil-

A © .327

liger and its predecessors implicitly

recognized. Where educational and/or

supervisional programs can be utilized to

increase a mentally retarded person’s

level of social functioning, and thereby

reduce the risk of pregnancy, and thus the

need for contraception of an kind, such

methods must be employed. Surgical alter-

natives are simply not warranted under

such circumstances, and by definition are

11 Likewise, if

not least restrictive.

contraceptive methods are available which

could provide pregnancy effectively and

more normatively without the need for

bodily invasion, sterilization is not the

least restrictive alternative. This was

11 The fact that the tubal ligation

is a relatively simple operation under

ordinary circumstances is irrelevant to

this analysis. Any invasion of the body

which can be avoided by appropriate educa-

tion and/or supervision is inappropriately

restrictive.

A - 328

De ee ee ee. oe ee ee ee ee eee aoe a eek Oe

Pe, Ee eS aes Sees

the case with sexually active Mildred

Terwilliger. As will be discussed more

fully below, it is also true with Cynthia

Wojciechowski, who is not sexually active,

and whose chances of becoming pregnant in

the foreseeable future were conceded by

petitioner’s own experts to be slight.

A = 329

PHILADELPHIA COUNTY

COURT OF COMMON PLEAS

ORPHANS’ COURT DIVISION

NO. 3107 of 1987

Estate of CYNTHIA WOJCIECHOWSKI,

Alleged Incompetent

GUARDIAN ’S EXCEPTIONS

TO OPINION AND ORDER

Cynthia Wojciechowski, through her

Guardian Ad _ Liten, Lorrie McKinley,

Esquire, hereby makes the _ following

exceptions to the February 28, 1990

Opinion and order of the Honorable Judith

Jamison which authorized Ms. Wojciechow-

ski’s mother, Delores Wasiek, to consent

to a laparoscopic tubal ligation on her

behalf:

1. The opinion and order contravene

controlling principles announced in In Re

Terwilliger, 304 Pa. Super. 553, 450 A.2d

1376 (1983) and In Re Rubis, Fid. Rep. 412

(1984), both of which prohibit steriliza-

A ~.330

tion of an incompetent without clear and

convincing evidence that sterilization is

the only practicable means of contracep-

tion; i.e. "that all less drastic contra-

ceptive methods, including supervision,

education, and training are unworkable:

and that "the sterilization procedure

requested is the least significant intru-

Sion necessary to protect the interests of

the individual". The court’s rejection of

less restrictive methods of pregnancy pre-

vention, including education, supervision,

and training, was not supported by clear

and convincing evidence. See also In Re

Schmidt, 494 Pa. 86, 429 A.2d 631 (1981)

(requiring least restrictive alternatives

in all matters affecting the mentally

regarded).

2 The opinion and order further

disregard Ms. Wojciechowski’s constitu-

A = 331

: : ;

tional rights of bodily integrity and

reproductive autonomy as defined by the

United States Supreme Court. See e.g.

Youngberg v. Romeo, 457 U.S. 307 (1982),

Roe v. Wade, 410 U.S. 113 (1973).

2 The opinion and order, being

contrary to law and fact, are not in Ms.

Wojciechowski’s best interest.

Respectfully submitted,

Ls/

LORRIE MCKINLEY

Guardian Ad Litem for

Cynthia Wojciechowski

Date: March 7, 1990

A - 332

PHILADELPHIA COUNTY

COURT OF COMMON PLEAS

ORPHANS’ COURT DIVISION

NO. 3107 of 1987

Estate of CYNTHIA WOJCIECHOWSKI,

Alleged Incompetent

4. The Court’s Decision Failed To

Acknowledge or Protect Ms.

Wojciechowski’s Constitutional

Rights to Bodily Integrity and

Reproductive Autonomy.

The Trial court in its decision fail-

ed to acknowledge at all Ms. Wojciechow-

ski’s liberty interest in bodily integrity

and characterized her right to reproduc-

tive autonomy as "illusory". Adopting the

wording of a 1987 decision by the House of

Lords, the Judge concluded that:

To talk of the "basic right" to

reproduce of an individual who

is not capable of knowing the

causal connection between inter-

course and childbirth, the

a * 333

nature of pregnancy, what is

involved in delivery, unable to

form maternal instincts or to

care for a child appears to me

by trial court)

One would search in vain for an

American decision during the past twenty

years which so cavalierly disposes of an

incompetent ’s right to reproductive

autonomy. The numerous American courts,

including Terwilliger, which have addres-

sed this issue have been unanimous in

their concern for this basic freedom. It

is precisely because the sterilization

decision impinges so directly on a consti-

tutional right that the least restrictive

alternative approach was adopted in such

cases. Beginning with Shelton v. Tucker,

364 U.S. 479 (1960) the Supreme Court had

required this approach where infringement

upon constitutional rights is at stake.

A - 334

The United States Supreme Court has

made clear that where educational or

supervisional alternatives can reduce a

mentally retarded person’s need for bodily

restraint, the Fourteenth Amendment re-

quires that such methods be pursued before

more restrictive alternatives are insti-

tuted. This is premised upon the right to

bodily integrity, which of course, was

firmly embedded in the common law. 24

Although it is not specified in the

Constitution, it is an aspect of the right

to privacy which arises from the penumbras

of the First, Third, Fourth, Fifth and

= See generally Cantor, "A

Patient’s Decision to Decline Life Saving

Treatment: Bodily Integrity Versus the

Preservation of Life", 26 Rutgers L. Rev.

228, 236 (1973). See also In Re A.C., 533

A.2d 611 (1987); In Re Gardner, 534 A.2d

947, 951 (Maine, 1987); Matter of Conroy,

486 A.2d 1209 (N.J. 1985). Matter of Moe,

aunee: In_Re Guardianship of Grant, 747

-2d 445 (Wash. 1988); Matter of Welfare

a dee 660 P.2d 738 (Wash. 1983).

A © 325

Ninth Amendments. Freedom from arbitrary

invasions of bodily integrity and personal

security are thus within the core of the

liberty protected by the Due Process

Clause. Youngberg v. Romeo, 457 U.S. 370

(1982). Justice Brandeis referred to this

as "the right to be left alone -- the most

comprehensive of rights and the right most

valued by civilized men." Olmstead v.

United States, 227 U.S. 438, 478 (1927).

Accord, Union Pacific Ry Co. v. Botsford,

141 U.S. 250 (1891). See generally

"Federalism and Fundamental Rights: The

Ninth Amendment", 38 Hastings Law J. 305

(1987). See also, Scott v. Plante, 532

F.2d 939, 946 n9 (1976); Runnels v. Rosen-

dale, 499 F.2d 733, 735 (9th Cir. 1974);

Matter of Quinlan, 355 A.2d 647 (N.J.

1976); Foody v. Memorial Hospital, 482

A.2d 713 (Conn. Super. 1984). The right

A =- 336

ee Ee

7

:

:

to bodily integrity is not dependent, of

course, upon intellectual capacity, but is

an inherent aspect of personhood not

diminished in any way by mental incompe-

tence. Youngberg; see also, Brophy v. New

England Sinai Hospital, 497 N.E.2d 626

(Mass. 1986).

Although the principle of least

restrictive alternative and its nexus with

the right to bodily integrity was not

squarely presented in Youngberg, the facts

presented there and the Court’s analysis

are instructive here. The case involved

the restrictiveness of a mentally retarded

man’s program at Pennhurst State School

and Hospital. Nicholas Romeo, who had an

I.Q of 8 or 9, was constantly placed in

physical restraints which caused him to

hurt himself and left him open to abuse by

other patients. Mr. Romeo’s mother sued

A= 337

Pennhurst, alleging that its treatment of

her son violated his right to be free from

bodily restraint, and arguing that with

appropriate education Mr. Romeo would

require far less restrictive treatment.

The Supreme Court required training in

order to protect Mr. Romeo’s' liberty

interests in safety and a minimum of

physical restraint, since with appropriate

education his behavior could be improved,

enabling him to participate in the thera-

peutic community under less restrictive

Circumstances. Id., 457 U.S. at 319.

This principle is just as applicable

here, as Terwilliger recognized. Where

educational and/or supervisional programs

can reasonably be expected to increase a

mentally retarded person’s level of social

functioning, and thereby reduce the risk

of pregnancy, and thus the need for con-

A =- 336

traception of any kind, such methods must

be employed and found unworkable prior to

any order for sterilization. Surgical

alternatives are simply not warranted

under such circumstances. By definition

they constitute an unjustified intrusion

upon the mentally retarded person’s right

to bodily integrity and can never be least

restrictive.

The relative ease with which a tubal

ligation can generally be performed does

not negate this conclusion. Any invasion

of the body which can be avoided by appro-

priate education and supervision is

inappropriately restrictive and intrusive

upon constitutional rights. In this case,

Ms. Wojciechowski’s rights to bodily inte-

grity and procreative autonomy may not be

cast aside on the theory that the unneces-

sary intervention can be easily performed.

A = 339

Terwilliger prohibits such a result absent

a clear and convincing showing that no

other alternative, including education,

supervision, and training, can provide Ms.

Wojciechowski with effective pregnancy

protection. The Fourteenth Amendment

requires no less, and no such showing has

been made here. Since the trial court’s

opinion fails to comport with these

principles, its judgment must be reversed.

IN THE SUPERIOR COURT OF PENNSYLVANIA

IN RE: Estate of Cynthia Wojciechowski,

an alleged incompetent

No. 02970PHL91

BRIEF FOR THE APPELLANT

Appeal From The Order Of The Court

Of Common Pleas Of Philadelphia

County, Orphan’s Court Division,

Docket No. 3107 of 1987

Lorrie McKinley, Esquire

Guardian Ad Litem for

Cynthia Wojciechowski

Penn Legal Assistance Office

International house, 6W

3701 Chestnut Street

Philadelphia, PA 19104

(215) 898-8427

December 2, 1991

Resubmitted November 9, 1993

A - 341

STATEMENT OF QUESTIONS INVOLVED

1)

2)

Did The Orphan’s Court En Banc

inappropriately apply Matter of Ter-

williger, 304 Pa. Super. 553, 450

A.2d 1376 (1983), when it granted

petitioner’s request for steriliza-

tion absent evidence that all less

drastic means [of contraception],

including education supervision, and

training, are unworkable?

Did the Orphan’s Court En Banc by its

order granting petitioner’s request

for sterilization of the appellant

violate the appellant’s constitution-

al right of privacy, including her

right to bodily integrity and repro-

ductive autonomy?

STATEMENT OF THE CASE

This case comes before the Superior

Court en banc on appeal from the August l,

A - 342

1991 opinion and decree of the Court of

Common Pleas of Philadelphia County,

Orphans’ Court Division En Banc, which

granted petitioner the authority to

consent to tubal ligation on behalf of

Cynthia Wojciechowski, the appellant in

this action. Ms. Wojciechowski, through

her undersigned guardian ad litem, seeks

reversal of the court’s order since it is

contrary to law and unsupported by the

record. Specifically, the court erred by

concluding that clear and convincing

evidence exists that sterilization is

necessary to advance the best interests of

Cynthia Wojciechowski as required by

Matter of Terwilliger, 304 Pa. Super. 553,

450 A.2d 1376 (1983). Terwilliger is of

course controlling here. Furthermore, the

court’s opinion fails to protect Ms.

Wojciechowski’s constitutional right to

A - 343

privacy by impinging upon her interests in

bodily integrity and procreative autonomy.

These errors of law require that the trial

court’s opinion be reversed.

Proposed sterilizations of the

mentally retarded in Pennsylvania are

strictly governed by Matter of Terwil-

liger, 304 Pa. Super. 553, 450 A.2d 1376

(1983). Recognizing the constitutional

implications which sterilization has for

persons with mental retardation, this

Court took pains in Terwilliger, a case of

first impression in the Commonwealth, to

"ensure that when sterilization is sought,

the incompetent’s rights are jealously

guarded." Id., 450 A.2d at 1382. The

court held that no sterilization can be

A - 344

ordered without clear and convincing proof

that it is in the best interest of the

mentally retarded person. This standard

cannot be satisfied without strict proof

that "sterilization is the only practic-

able means of contraception, i.e., all

less drastic contraceptive methods,

including supervision, education, and

training are unworkable." Id. 450 A.2d at

1383. Furthermore, testimony must show

that "the sterilization procedure re-

quested is the least significant intrusion

necessary to protect the interests of the

individual."

The decision of the Orphans’ Court

falls far short of establishing that the

sterilization of sexually inactive and

highly supervised Cynthia Wojciechowski

meets Terwilliger’s exacting standard.

While the Court purported to apply Terwil-

A =- 365

liger, many of its most crucial findings

are not supported by the record. Its

reliance upon such findings to authorize

the sterilization at issue here contra-

venes the teachings of Terwilliger and

trammels upon Ms. Wojciechowski’s consti-

tutional right to privacy. As such, the

lower court’s ruling must be reversed.

Il. Terwilliger and The Right to Privacy

Although Terwilliger was the first

official pronouncement by a Pennsylvania

court in recent years on the steriliza-

tion issue, it was consistent with deci-

sions from other states in which the issue

had been analyzed and standards developed.

These cases were premised upon two separ-

ate aspects of the constitutional right of

privacy -- the right to bodily integrity

and the right of procreative choice. See

e.g., Matter of Moe; 385 Mass. 555, 432

A - 346

N.E.2d 712 (1982); In Re Grady, 85 N.J.

235, 426 A.2d 467 (1981); Matter of CDM,

627 P.2d 607 (Alaska 1981); North Carolina

Association of Retarded Children v. North

Carolina, 420 F. Supp. 451 (1976). Recog-

nition of these rights on behalf of per-

sons with mental retardation coincided

with belated societal acknowledgement that

persons with retarda-tion are entitled to

the same basic civil and constitutional

rights as other citizens, and changing

views concerning the capabilities of per-

sons with retardation as well. By the

1970’s, ‘the negative stereotypes which

previously governed our treatment of

persons with retardation had been replaced

with a developmental approach which recog-

nized the potential of every retarded

person to grow, develop and learn. See

generally Mackin & Gaylin, Mental

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iia

Retardation and Sterilization (1981).

Principles of normalization, which

dictated that to the greatest extent

possible the person with retardation

should be treated as if no handicap exist-

ed, and the closely allied doctrine of

least restrictive alternative through

which normalization principles were imple-

mented, became the keystones of service

delivery to the mentally retarded commu-

nity. See generally, Turnbull, The Least

e ictiv ive:

Practice (1981). They were further

reflected not only in sterilization deci-

sions nationwide, but in other cases

involving the care, treatment, and educa-

tion of the retarded. See e.g-., Young-

berg v. Romeo, 457 U.S. 307 (1982);

Pennhurst State School & Hospital v.

Halderman, 451 U.S. 1 (1981), 612 F.2d 84

A - 348

(3d Cir. 1979), 446 F. Supp. 1295 (E.D.

Pa. 1977); le v. in, 462 F.Supp.

1131 (D.N.J. 1978), modified and remand-

ed, 653 F.2d 836 (3d Cir. 1981). Prior to

Terwilliger the Pennsylvania legislature

and Supreme Court determined that these

principles should govern all matters

relating to the mentally retarded in this

state. In Re Schmidt, 494 Pa. 86, 429

A.2d 631 (1981); Mental Health Procedures

Act, Act of 1976, July 8, P.L. 817, No.

143, § 101, 50 P.S. § 7101.

Against this backdrop Terwilliger

required that any proposed sterilization

be proven by clear and convincing evi-

dence as the least restrictive alterna-

tive for the individual. By definition,

any alternative not the least restrictive

of the individual’s capacities and/or

potential for growth could not be in the

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person’s best interest. This view was

consistent with previously decided steri-

lization cases and has been adopted by

subsequent courts as well. E.g., In Re

Grady, supra; In Re: Hillstrom, 363 N.W.2d

871 (Minn. 1985).

In addition to its consistency with

state law and the views of other courts,

the result in Terwilliger was constitu-

tionally required. At least since Shelton

v. Tucker, 364 U.S. 479 (1960), where

infringement upon fundamental rights is

concerned, the least restrictive means

must be utilized by courts and govern-

mental entities in pursuit of legitimate

objectives to preserve as far as possible

individual liberty. See also NAACP v.

Alabama, 377 U.S. 288 (1964); Rennie v.

Kline, 653 F.2d 836 (3d Cir. 1982);

A= 350

:

4

3

:

:

3

Vv. WwW j Wi ing-

boro, 535 F.2d 786 (3d Cir. 1976). In

other words, the government can do no more

than is necessary to accomplish its objec-

tive. There can be no question that the

sterilization of a person with mental

retardation permanently extinguishes the

right to procreate, a fundamental consti-

tutional interest, and at the same time

impinges upon another fundamental privacy

right, the right to bodily integrity. See

e.-g., Winston v. Lee, 470 U.S. 753 (1984);

Matter of Moe, 385 Mass. 555, 432 N.E.2d

712 (1982); In re Grady, 85 N.J. 235, 426

A.2d 467 (1981); Matter of CDM, 627 P.2d

607 (Alaska 1981); Matter of Quinlan, 70

N.J. 10, 355 A.2d 647 (1976); North Caro-

1; Lees! ; :

North Carolina, 420 F. Supp. 451 (1976).

a= 3393

As such, the least restrictive alter-

native approach is constitutionally man-

dated. Justice Brandeis described the

right to bodily integrity as "the right to

be left alone -- the most comprehensive of

rights and the right most valued by civil-

ized men." Olmstead _v. United States,

227 U.S. 438, 478 (1927). Accord, Union

Pacific Ry Co. v. Botsford, 141 U.S. 250

(1891). See generally "Federalism and

Fundamental Rights: The Ninth Amendment",

38 Hastings Law J. 305 (1987). See also,

s Vv e, 532 F.2d 939, 946 ng

(1976); Runnels _v. Rosendale, 499 F.2d

733, 735 (9th Cir. 1974); Matter of

Quinlan, 355 A.2d 647 (N.J. 1976); Foody

v. Memorial Hospital, 482 A.2d 713 (Conn.

Super. 1984).

The constitutional interest in bodily

integrity, sometimes referred to as per-

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PIII Sos Tats vneO ih Ae

sonal autonomy or freedom from non-con~

sensual bodily invasion, belongs to both

competent and incompetent individuals.

v. Missouri ’

____—SsU.S. __, 110 8.Ct. 2481 (1990),

Matter of Quinlan, 70 N.J. 10, 355 A.2d

647 (1976). As stated in Browning v.-

Herbert, 568 So.2d 4 (Fla. 1990): "the

primary concern ... is that this valuable

right should not be lost because the ...

condition of the patient prevents 4

conscious exercise of the choice to refuse

... treatment." Accord, Quinlan, 355 A.2d

at 664. See also, Youngberg, supra;

Brophy v. Mount Sinai Hospital, 497 N.E.2d

626 (Mass. 1986); Terwilliger, supra.

Indeed, it is the fact of Ms. Wojcie-

chowski’s incompetence, and that of others

like her, which makes the right to bodily

integrity so significant. The most power~

A=- 353

less numbers of society need to rely most

on constitutional barriers against bodily

intrusion because they are unable to

communicate decisions concerning their

wishes. The significance of their rights

can be easily trivialized by those in a

position to make those decisions for them,

even despite the most benign motives.

This problem was well exemplified at

several points during the trial in this

case. It was the singular fact of Ms.

Wojciechowski’s mental retardation that

led petitioner’s experts to recommend the

invasive sterilization procedure rather

than some less restrictive alternative.

Without exception, petitioner’s experts

conceded that with a medical profile iden-

tical to Ms. Wojciechowski’s, they would

not recommend sterilization for a woman

who was not mentally retarded. N.T. at

A=- 384

ee ee

ee ee ee

110, 213-214, 248. See also N.T. 8/17/89

at 59-60. This undermines completely the

testimony given by these experts as to the

urgency of sterilization to protect Ms.

Wojciechowski from untoward medical conse-

quences, and demonstrates how something

which would be considered a dramatic inva-

sion on the personhood of one with normal

intelligence is seen as not significant to

the person with retardation. This dis-

tinction is even more stark, considering

the fact that the normal person would have

the opportunity to consent to the proce-

dure, where there can be no consent here.

So reluctant would these experts be to

effectuate such an extinguishment of a

fundamental right, that they would not

recommend or perform the procedure even

if requested by a normal adult of Ms.

Wojciechowski’s age.

A = 335

The trial court’s treatment of the

issue suffered from the same insensitivity

to the significance of Ms. Wojciechowski’s

right to privacy. As did the court En

Banc, the trial court failed to acknow-

ledge any interest Ms. Wojciechowski might

have to bodily integrity. Her perception

that Ms. Wojciechowski’s right to procre-

ative autonomy was illusory, and the ease

with which that right could be extin-

guished, were dispositive for the trial

judge. Obviously, this misses the point.

Any invasion of the body to accomplish

something which can just as effectively be

achieved through education and supervision

is inappropriately restrictive and intru-

Sive upon the right to bodily integrity,

which is not diminished in any way by the

fact of incompetence. See Youngberg,

Supra (where training could reduce the

A - 356

level of bodily restraint and permit

functioning with fewer restrictions, it

must be provided).