Amicus Curiae Brief — Cruzan Ex Rel. Cruzan v. Director, Missouri Department of Health

Supreme Court, US,

F1li.z# D

‘| sep 2b 1969

. aten P. SPANIOL, oR.

t

No. 88-1503

IN THE

Supreme Court of the United

Ci ERK

OCTOBER TERM, 1989

NANCY BETH CRUZAN, by her parents and co-guardians,

LESTER L. and JOYCE CRUZAN,

‘ Petitioners,

DIRECTOR OF MISSOURI DEPARIMEN) OF TIRALTH,

and ADMINISTRATOR OF THE Mossour

REHABILITATION CieNntvink AQ

MY. VieKnon,

Rr HMICILLS,

v.

Tran Cc. McCanseE, © dint, A Lite

I> ]

re Pott Cait,

On Writ of Certiorari to the

Supreme Court of the State of Missoeur:

BRIEF OF

SOCIETY OF CRITICAL CARE MEDICINE,

PRESBYTERIAN-UNIVERSITY HOSPITAL,

AND TRUSTEES OF THE

UNIVERSITY OF PENNSYLVANIA AS AM/C] CURIAE

IN SUPPORT OF PETITIONERS

STEPHAN E. LAWTON

Counsel of Record

THOMAS N. BULLEIT, JR.

REED SMITH SHAW & MCCLAY

1200 18th Street, N.W.

Washington, D.C. 20036

(202) 457-6100

ELLEN COVNER WEISS

3400 Spruce Street

Philadelphia, PA 19104

(215) 662-6746

September 1, 1989 Attorneys for the Amicus Curiae

ee ee —_

BEST AVAILABLE COPY

, D.c. 20001

QUESTION PRESENTED

Whether the decision of the Missouri Supreme Court

denying petitioner the power, through her parents and

co-guardians, to refuse continuation of life-sustaining

medical treatment, is incompatible with the public policy

of maintaining the ethical integrity of the medical pro-

fession, and violates petitioner’s constitutional right of

privacy?

(i)

TABLE OF CONTENTS

QUESTION PRESENTED ccccccccccccccccssssssssssssssssssse-s

TABLE OF AUTHORITIES ...................... a

INTEREST OF AMICI CURIAE oocccccccccccc-ccscsssssseoooeeee

A

I. THE DECISION OF THE MISSOURI SU-

PREME COURT IS INCOMPATIBLE WITH

THE PUBLIC POLICY OF MAINTAINING

THE ETHICAL INTEGRITY OF THE MEDI-

eR

A. A Physician Has An Ethical Obligation, De-

riving From Respect For The Dignity And

Autonomy Of The Patient, To Secure The In-

formed Consent Of The Patient Prior To

Rendering Medical Treatment, And To Ter-

minate Such Treatment Upon The Patient’s

a cecunmeveonsoccsccs

B. The Ethical Obligation To Honor A Patient’s

Decision To Forego Medical Treatment Ap-

plies To Refusal Of Life-Sustaining Medical

_ ae

C. The Ethical Obligation To Honor The Pa-

tient’s Decision To Forego Life-Sustaining

Medical Treatment Does Not Depend On The

Presence Of A Terminal Illness. ...................

D. The Ethical Obligation To Honor The Pa-

tient’s Decision To Forego Life-Sustaining

Medical Treatment Applies Equally To Deci-

sions To Withhold Treatment Initially, And

To Withdraw Treatment Already Begun. _..

E. The Ethical Obligation To Honor The Pa-

tient’s Decision To Forego Life-Sustaining

Medical Treatment Applies To Artificial Nu-

trition And Hydration. ...................022200000......

(iii)

11

12

13

14

iv

TABLE OF CONTENTS—Continued

F. The Ethical Opligation To Honor The Pa-

tient’s Decision To Forego Life-Sustaining

Medical Treatment Applies To Patients Who

Once Had, But No Longer Possess, Decision-

ETI, cnicitreniteneeassctteeuetiodicnnenies

G. The Ethical Obligation To Honor The Pa-

tient’s Decision To Forego Life-Sustaining

Medical Treatment Applies To A Patient In

A Persistent Vegetative State. 0000000000000...

Bis CI, eciccussticcnsccsenictenniahibaniiis lhl alia

II. THE DECISION OF THE MISSOURI SU-

PREME COURT VIOLATES NANCY CRU-

ZAN’S CONSTITUTIONAL RIGHT OF PRI-

WERNER | ssn tevsteiinsetiniainiadammpsniiaaanmannimatmbiedimaats

A. The Cases Of This Court Recognize A Right

Of Privacy Which Protects, Among Other

Things, The Bodily Integrity Of The Indi-

vidual Where Protection Of Such Integrity

Is Deeply Rooted In This Nation’s History

BRIN TD wetiistilsinssnieiicntesedentdarciaaeidaameteaians

B. Cases From Other Courts Have Concluded

With Near Unanimity That The Right Of

Privacy Necessarily Includes The Right To

Forego Unwanted But Life-Sustaining Medi-

GE TIE, ccossttonicceuenitenattenbitiaciaiccenmisccs.

C. While Reasonable Regulation In Areas Pro-

tected By The Right Of Privacy Is Permitted

In Support Of Other Important State Inter-

ests, Such Regulation May Not “Unduly Bur-

den” Exercise Of The Right. ..........0000..00...

D. The Missouri Supreme Court’s Decision Un-

duly Burdens Exercise Of The Right Of Pri-

vacy By Denying Any Right To Withdraw

Life-Sustaining Nutrition And Hydration. ___

TUITE . <xanscienssiicinstnintienininneneeeeibietianemaatneypemeliduniinn

Page

15

19

20

21

22

23

25

30

Vv

TABLE OF AUTHORITIES

CASES Page

Bowers v. Hardwick, 478 U.S. 186 (1986) ............ 23

Brophy v. New England Sinai Hospital, Inc., 398

Mass. 417, 497 N.E.2d 626 (Mass. 1986) ........... 24

In re Coyler, 99 Wash.2d 114, 660 P.2d 738 (Wash. -

RR Series aren are MEN. Sirs Ne Ree PP OR 24, 25

Cruzan v. Harmon, 760 S.W.2d 408 (Mo. 1988) ....passim

In re Drabick, 200 Cal.App.3d 185, 245 Cal. Rptr.

840 (Cal. App. 6 Dist.), cert. denied, 109 S.Ct.

ee nn scicabiiiiadeedaannaamnieiena 24

Gray v. Romeo, 697 F. Supp. 580 (D.R.I. 1988) .. 24

Griswold v. Connecticut, 381 U.S. 479 (1965) _....... 22

Moore v. City of East Cleveland, 431 U.S. 494

IIIT cis cat cstectiaet sanimandunennannasenmnndaansemmenmesieabeeiaber 23

Palko v. Connecticut, 302 U.S. 319 (1987) ........... 23

In re Quinlan, 70 N.J. 10, 355 A.2d 647 (N.J.),

cert. denied sub nom. Garger v. New Jersey,

A ye omiasenentas 24, 25

Roe v. Wade, 410 U.S. 118 (1978) .........0..2.00.2.... 22, 23, 25

Skinner v. Oklahoma, 316 U.S. 535 (1942) 0.000.000... 22

In re Storar/In re Eichner, 52 N.Y.2d 363, 438

N.Y.S.2d 266, 420 N.E.2d 64 (N.Y.), cert. de-

nied sub nom. Storar v. Storar, 454 U.S. 858

I i hacdeabciddsbadaiindansaemenian 25

Superintendent of Belchertown State School v.

Saikewicz, 373 Mass. 728, 370 N.E.2d 417

SIG 7 III ac sinc, sll ceas ceianiapasietintinaimadadetananmmiianinl 25

Webster v. Reproductive Health Services, 57

U.S.L.W. 5028 (July 3, 1989) ................000000000..... 26, 28

OTHER AUTHORITIES

American Academy of Neurology, Position of the

American Academy of Neurology on Certain As-

pects of the Care and Management of the Per-

sistent Vegetative State (1989) —.............. 14, 19, 20, 28

American Medical Association, Opinions of the

Council on Ethical and Judicial Affairs of the

American Medical Association (1986) ............... passim

vi

TABLE OF AUTHORITIES—Continued

Page

The Appleton Consensus: Suggested International

Guidelines for Decisions to Forgo Medical

Treatment, 151 Ugeskrift For Laeger (Jour-

nal of the Danish Medical Association) 700

IE a RRS te ats a RS allel aT passim

Areen, The Legal Status of Consent Obtained from

Families of Adult Patients to Withhold or

Withdraw Treatment, 258 JAMA 229, 232-33

STII 5 sides nttansecinchtcemencehddiaiininianminnaesiaiiiaiadintiiadnidiiide 18

Brett & McCullough, When Patients Request Spe-

cific Interventions, 315 N. Eng. J. Med. 1347

UTI ‘sescsisthcaliaiiatisidinsitlatebhdsicldaeathcdiag dceniidibdraeiiiba asda 8

Emmanuel, A Review of the Medical and Legal

Aspects of Terminating Medical Care, 84 Am.

Is I i 9

The Hastings Center, Guidelines on the Termina-

tion of Life-Sustaining Treatment and the Care

SF RESET te REA OEE passim

Lynn & Childress, Must Patients Always be Given

Food and Water?, The Hastings Center Report

SI 7,15

Meisel et als., Hospital guidelines for deciding

about life-sustaining treatment: Dealing with

health “limbo’’, 14 Critical Care Medicine 239

RR TACTIC 02D Se ATL 11, 14, 16

Mill, On Liberty (Macmillan ed. 1985) (1859) _. 9

Presbyterian-University Hospital, Guidelines on

Foregoing Life-Sustaining Treatment (May

RRNA N ce Paci er vie Ae LO RS PR OE 11, 14, 15, 16

President’s Commission for the Study of Ethical

Problems in Medicine and Biomedical and Be-

havioral Research, Deciding to Forego Life-

Sustaining Treatment (1983)... passim

President’s Commission for the Study of Ethical

Problems in Medicine and Biomedical and Be-

havioral Research, Making Health Care Deci-

I I i 6

vii

TABLE OF AUTHORITIES—Continued

Page

Providence Medical Center, Guidelines On Fore-

going Life-Sustaining Treatment (June 28,

ID vcrocsccnsicsiinitentiniansidcatiiabainaninanpitiniinainitenipmnnanianeenes 11, 16

Ruark, et als., Initiating and Withdrawing Life

Support: Principles and Practice in Adult Medi-

cine, 318 N. Eng. J. Med. 25 (1988) .................. 6, 7,14

Rymer, Courts Differ on Disposition of Patient's

Right to Die Cases, 58 The Citation 92 (1989)... 19

Smith & Wigton, Modeling Decisions to Use Tube

Feeding in Seriously Ill Patients, 147 Arch.

Intern. Med. 1242 (1987) .............................. ee 12

Steinbrook & Lo, Artificial Feeding—Solid Ground,

Not a Slippery Slope, 318 N. Eng. J. Med. 286

CII acncicieenenvissenssctteincenensdtentinhoninapenncesicicetitnnistiinaniniantiaess 14

Thomasma and Pellegrino, The Role of the Family

and Physicians in Decisions for Incompetent

Patients, 8 Theoretical Medicine 283 (1987)... 9,10

United States Office of Technology Assessment,

Life-Sustaining Technologies For The Elderly

ITED scocsieccsosctinsicscniennacecsshcenensdsaansctindadinniaianionentanimavcisinadibin 7

IN THE

Supreme Court of the United States

OCTOBER TERM, 1989

No. 88-1503

NANCY BETH CRUZAN, by her parents and co-guardians,

LESTER L. and JOYCE CRUZAN,

. Petitioners,

DIRECTOR OF MISSOURI DEPARTMENT OF HEALTH,

and ADMINISTRATOR OF THE MISSOURI

REHABILITATION CENTER AT

MT. VERNON,

. Respondents,

THAD C. MCCANSE, Guardian Ad Litem,

Respondent.

On Writ of Certiorari to the

Supreme Court of the State of Missouri

BRIEF OF

SOCIETY OF CRITICAL CARE MEDICINE,

PRESBYTERIAN-UNIVERSITY HOSPITAL,

AND TRUSTEES OF THE

UNIVERSITY OF PENNSYLVANIA AS AMICI CURIAE

IN SUPPORT OF PETITIONERS

INTEREST OF AMICI CURIAE

Amici curiae are an organization of health care pro-

fessionals, and two hospitals employing or affiliated with

numerous health care professionals. Many of the mem-

bers, or professional employees or affiliates, of each amicus

are involved in the care and treatment of critically ill,

2

critically injured, or dying patients. All such health care

professionals share in common and abiding dedication to

promote the public welfare through the maintenance of

the highest professional and ethical standards and the

provision of quality health care.

Amicus Society of Critical Care Medicine (“Society”)

is a private, voluntary, non-profit, multi-disciplinary,

multi-professional organization formed in 1970 by spe-

cialists from Anesthesiology, Internal Medicine, Pediatrics

and Surgery. From 28 individuals the Society has grown

in 19 years to over 3400 persons, including physicians,

nurses, respiratory therapists, pharmacists, scientists,

technologists, engineers, and persons working in health-

related industries. Members of the Society blend the

knowledge, skill and technology from the four medical

specialities, nursing, and allied health professions into a

coordinated effort to achieve an optimal outcome for

critically ill or injured patients. The goals of the So-

ciety include improving humane care for patients with

acute life-threatening illness and injuries, promoting and

developing optimal facilities in which Critical Care Medi-

cine may be practiced, and assuring high educational stand-

ards in Critical Care Medicine.

Amicus Presbyterian-University Hospital is a private

non-profit hospital with 636 licensed beds, and is a major

provider of adult acute health care including specialty

services in neurology and neurosurgery, oncology, organ

transplantation, emergency medicine and trauma, cardiol-

ogy, orthopedics, nephrology, and pediatrics. Founded in

1893, the Hospital is a leading academic medical educa-

tion and research center, employing approximately 600

full-time physicians and 1500 nursing staff, and providing

facilities to more than 800 interns and residents. The

hospital performs more organ transplants, and more types

of transplants, than any other hospital in the world. The

Hospital also serves as a teaching hospital for the Uni-

versity of Pittsburgh School of Medicine and the other

schools of the health sciences.

3

Amicus Trustees of the University of Pennsylvania is a

private, non-profit educational institution and the owner

and operator of the Hospital of the Univervity of Penn-

sylvania, in whose interests the Trustees have joined this

brief. The Hospital opened in 1873 and, with the Uni-

versity School of Medicine, was the first teaching hospital

in the country. It has 701 licensed beds, employs more

than 600 active staff physicians and more than 1,060

nurses, and is a national leader in patient care, educa-

tion, and research.

Amici’s interest in this case stems from the desire of

their members and professional employees and affiliates

to provide medical care of the highest quality, their dedi-

cation to good medical practice and maintaining the ethi-

ca’ integrity of the medical profession, and their commit-

ment to the dignity and autonomy of individual patients

by preserving the freedom of patients to choose whether

or not to receive medical treatment. To further these

interests, health care professionals must be in a position

to discharge their responsibilities to offer care and treat-

ment according to the best clinical judgment consistent

with professional and ethical standards. Similarly, pa-

tients and their families must be free to exercise the pa-

tient’s right to informed consent or refusal to care and

treatments offered, including life-sustaining treatments.

Amici’s interest is not in debating the philosophical, ethi-

cal, moral, or religious issues surrounding a patient’s re-

fusal of life-sustaining medical treatment. Amici do, how-

ever, share an interest in making certain that, when a

patient does face the issue of whether to accept or decline

life-sustaining treatment, state laws do not impermissibly

interfere with the ability of treating health care profes-

sionals to carry out the patient’s informed decision in a

manner consistent with the best ethical and professional

standards and the patient’s particular health needs.

The decision of the Missouri Supreme Court in this case

interferes with the patient’s right to decline unwanted

medical care and treatment, and prevents health care pro-

4

fessionals from providing medical care consistent with

prevailing medical, ethical, and professional standards.

The outcome of this case will directly affect the profes-

sional services amici or their members, or professional

employees or affiliates will provide and the patients whom

they serve. Accordingly, amici wish to present their views

concerning the important issues raised in this case.’

ARGUMENT

In the decision below, the Missouri Supreme Court held

that Nancy Cruzan’s right of privacy under the United

States Constitution, if it existed, was not absolute, but

had to be balanced against the state’s interests to the

contrary. Cruzan v. Harmon, 760 S.W.2d 408, 419 (Mo.

1988). The court identified four such interests: preser-

vation of life, prevention of homicide and suicide, protec-

tion of innocent third parties, and the maintenance of

the ethical integrity of the medical profession. Jd. Con-

cluding that only the state’s interest in the preservation

of life was implicated by Nancy Cruzan’s situation, the

court held that this state interest outweighed Nancy’s

right of privacy, assuming that right was infringed upon.

Id.

The Missouri Supreme Court’s decision is flawed in two

fundamental respects. First, as shown in Section I be-

low, the court’s “balancing” of interests is unsound due

to its failure to consider the state’s acknowledged public

policy interest in maintaining the ethical integrity of the

medical profession.* While not in itself a basis for revers-

1 Pursuant to Rule 36 of the Rules of this Court, the parties have

consented to the filing of this brief. The parties’ letters of consent

have been filed with the Clerk of the Court.

?The Missouri Supreme Court was correct in concluding that

the other state interests listed were not implicated by this case.

It is a well-accepted medical and legal judgment that withholding '

or withdrawing life-sustaining medical treatment is not the equiv-

alent of homicide (euthanasia) or assisting suicide. As stated in

the report of a major institute for the study of medical ethical

5

ing the decision of the Missouri Supreme Court, the well-

established ethical tradition of respect for patient autonomy

by medical professionals evidences a public policy weigh-

ing heavily against the “unqualified” interest in preserva-

tion of life pronounced by the court. Jd. at 420. This

public policy, deeply rooted in our Nation’s history and

tradition, is part of the foundation of the constitutional

right of privacy described in Section II. This second sec-

tion dei..onstrates that the Missouri Supreme Court’s de-

cision must be reversed because it violates Nancy Cru-

zan’s right of privacy.

I. THE DECISION OF THE MISSOURI SUPREME

COURT IS INCOMPATIBLE WITH THE PUBLIC

POLICY OF MAINTAINING THE ETHICAL IN-

TEGRITY OF THE MEDICAL PROFESSION.

Prevailing ethical standards among physicians * require

that the decisions of a patient with decisionmaking ca-

issues, “[m]edical tradition and customary practice . . . [do] not

hold the health care professional morally responsible for the death

of a patient when life-sustaining treatment is refused and the pro-

fessional’s purpose is not to cause death, but to honor the refusal.”

The Hastings Center, Guidelines on the Termination of Life-

Sustaining Treatment and the Care of the Dying 128-29 (1987)

(“Hastings Center Report”). Accord, The Appleton Consensus:

Suggested International Guidelines for Decisions to Forgo Medical

Treatment, 151 Ugeskrift For Laeger (Journal of the Danish Medi-

cal Association) 700, 703 (1989) (“Appleton Consensus’’); Presi-

dent’s Commission for the Study of Ethical Problems in Medicine

and Biomedical and Behavioral Research, Deciding to Forego Life-

Sustaining Treatment 38-39 (1983) (“President’s Commission Re-

port”) (Commission has not found any instances in which civil or

criminal liability imposed on health care professionals or others

for acquiescing in patient’s decision to forego life-sustaining treat-

ment).

Likewise, where, as here, the patient’s family and legal repre-

sentatives all concur in the decision to withdraw treatment, there

can be no harm to innocent third parties by honoring that decision.

3 Amici have focused their attention in this brief on the ethical

code of physicians for three reasons. First, it ordinarily will be

the treating physician or physicians who are in a position to give

6

pacity ‘ regarding the withholding or withdrawing of life-

sustaining medical treatments, including artificially-sup-

plied nutrition and hydration, be fully respected, whether

or not the patient currently retains sueh capacity. Be-

cause it denies physicians the authority to respect such

decisions, the Missouri Supreme Court’s decision repre-

sents an unwarranted violation of the medical profes-

sion’s ethical integrity.

A. A Physician Has An Ethical Obligation, Deriving

From Respect For The Dignity And Autonomy Of

The Patient, To Secure The Informed Consent Of

The Patient Prior To Rendering Medical Treat-

ment, And To Terminate Such Treatment Upon

The Patient’s Request. :

The role of the physician in our soeiety follows a long

and honorable history. Several fundamental ethical prin-

ciples are clear. Physicians generally must strive both

to preserve life and to relieve suffering. See, e.g., Ruark,

the orders that will withhold or withdraw life-sustaining medical

treatments or bear the continued care of a patient whose decision

to withhold or withdraw medical] treatment has not been honored.

Second, as the acknowledged leaders of the health professions,

physicians have generated a more clearly documented set of stand-

ards than other health care professionals. Finally, amici believe

that the prevailing standards of ethical conduct applicable to phy-

sicians are consistent with those applicable to other health care

professionals, and therefore represent the appropriate standards to

be applied by other professionals.

* As used in this brief, the term “decisionmaking capacity” (or

“capacity”) has the meaning given it by the President’s Commis-

sion for the Study of Ethical Problems in Medicine and Biomedical

and Behavioral Research, Making Health Care Decisions (1982):

“(1) possession of a set of values and goals; (2) the ability to

communicate and to understand information; and (3) the ability

to reason and to deliberate about one’s choices.” Jd. at 56-57. The

term is used in lieu of legal “competence,” because amici do not

wish to imply that a judicial determination of competence or in-

competence is necessary to trigger the decisionmaking processes

outlined in this brief.

7

et als., Initiating and Withdrawing Life Support: Prin-

ciples and Practice in Adult Medicine, 318 N. Eng. J.

Med. 25, 26 (1988) (“Ruark’’). These two obligations

are often described collectively as the principle of benefi-

cence. Appleton Consensus at 701. Physicians also must

be cautious to provide treatment in accordance with the

principle of non-maleficence, expressedin the maxim,

primum non nocere: “first do no harm.” Ruark at 26;

Appleton Consensus at 701. Medical commentators gen-

erally agree that together, these principles obligate the

physician to provide treatment that will be more benefi-

cial than burdensome to the patient. E.g., Appleton Con-

sensus at 701; Lynn & Childress, Must Patients Always

Be Given Food and Water?, The Hastings Center Report

17, 18 (October 1983) (“Lynn & Childress’’).

Finally, and most importantly for purposes of the case

at bar, physicians are bound to honor the principle of

patient autonomy, which finds its most common expres-

sion in the physician’s obligation to obtain the “informed

consent” of the patient prior to rendering any treatment.

E.g., American Medical Association, Opinions of the Coun-

cil on Ethical and Judicial Affairs of the American Medi-

cal Association, 8.07 (1986) (“AMA Opinions”); Hast-

ings Center Report at 19; United States Office of Tech-

nology Assessment, Life-Sustaining Technologies For The

Elderly 23 (Box 1-A) (1987) (“OTA Report’); Presi-

dent’s Commission Report at 43-44.

These principles of medical ethics may occasionally

conflict, leading to an ethical dilemma. For example, the

principle of autonomy may conflict with the principles

of beneficence or non-maleficence if a patient desires a

particular treatment that the treating physician believes

will be of no benefit, or will be detrimental. In this in-

stance, the obligation to provide treatment that is more

beneficial than burdensome prevails: the care available

from health care professionals “is generally limited to

what is consistent with role-related professional standards

8

and conscientiously held personal beliefs.... Noone...

has an obligation to provide interventions that would, in

his or her judgment, be countertherapeutic.” President’s

Commission Report at 44; Brett & McCullough, When

Patients Request Specific Interventions, 315 N. Eng. J.

Med. 1347 (1986).

The outcome of the ethical dilemma is reversed, how-

ever, when the issue is whether or not to provide a par-

ticular treatment that the physician, or some one other

than the patient, believes will be beneficial, and the pa-

tient refuses such treatment. In this instance, respect

tor the autonomy of the individual, as manifested in the

principle of informed consent, demands that the patient’s

decision be respected and followed.

The resolution of this last ethical dilemma—the one

presented by the case of Nancy Cruzan—is illustrated in

the Opinions of the AMA Council on Ethical and Judi-

cial Affairs (“AMA Council”). As noted above, the phy-

sician’s social commitment includes the often-related obli-

gations to strive to sustain life and to relieve suffering.

Id., 2.18. “Where the performance of one duty conflicts

with the other, the choice of the patient, or his family

or legal representative if the patient is incompetent to

act in his own behalf, should prevail.” Id. (emphasis

supplied). Thus, it is the physician’s ethical obligation

to honor the choice of the patient in determining whether

a particular treatment is more burdensome than bene-

ficial. In other words, where the issue is whether to

accept or forego treatment, the controlling ethical obliga-

tion of the physician is to honor the patient’s decision.

It is not surprising that the principle of patient au-

tonomy, manifested in the requirement of obtaining in-

formed consent to medical treatment, is the cornerstone

of the treatment decisionmaking procss. The first of the

Ethical Principles adopted by the AMA Council states

that a physician shall be dedicated to providing com-

petent medical service “with compassion and respect for

9

human dignity.” AMA Opinions at ix. The fourth such

Principle binds the physician to “respect the rights of

patients.” Jd. There is broad agreement within the pro-

fession that proper respect for the dignity and rights of

patients means first and foremost that the decision

whether to accept or forego treatment is for the patient

alone. As two medical-ethical commentators have put it,

“any violation of strongly expressed patient wishes would

constitute an affront to dignity.” Thomasma and Pel-

legrino, The Role of the Family and Physicians in Deci-

sions for Incompetent Patients, 8 Theoretical Medicine

283, 285 (1987) (“Thomasma & Pellegrino’). The phy-

sician’s obligation to preserve patient dignity thus de-

mands that the patient’s decision to forego medical treat-

ment be honored.

Medical commentators have found the root of the

ethical principle of patient autonomy in treatment deci-

sionmaking in the more general respect which the medi-

cal profession, and our society generally, hold for the

autonomy of the individual to make the choices that will

affect the course of his or her life. “A liberal society

respects persons by permitting them to realize their ulti-

mate ends whether others regard them as worthy or

foolish. In medical care, this means patients must ulti-

mately decide whether they want a particular medical

intervention or not.” Emmanuel, A Review of the Medi-

cal and Legal Aspects of Terminating Medical Care,

84 Am. J. Med. 291, 292 (1988). See also Mill, On

Liberty 13 (Macmillan ed. 1985) (1859) (“the only pur-

pose for which power can be rightfully exercised over

any member of a civilized community, against his will,

ts to prevent harm to others”). The physician’s obliga-

tion to honor “the patient’s right to self-decision,” id.,

thus has its roots deep in our Nation’s history and tradi-

tion.

That the final decision whether to accept or forego

treatment belongs to the patient is not to say that the

physician has no role in the decisionmaking process.

10

“Informed consent” is a two-part process: the patient

consents based on his or her subjective value system and

the information provided by the physician. In the treat-

ment of many conditions, the physician may not be in

a position to recommend a single “best” course of treat-

ment, but may present several options. The patient’s

choice may depend on his or her feelings about which

side effects are more burdensome (e.g., treatment of

breast cancer by surgery or chemotherapy and radiation

therapy), as much as on the chances of the treatment’s

success.

Thus, while agreeing that the final decision must be

the patient’s, several medical commentators have em-

phasized the importance of a dialogue between physician

and patient to assist the patient in arriving at a decision

as to a course of treatment. See, e.g., Thomasma & Pel-

legrino at 285; President’s Commission Report at 43-60.

The American Medical Association has endorsed this posi-

tion unequivocally :

The patient should make his own determination on

treatment. The physician’s obligation is to present

the medical facts accurately to the patient or to the

individual responsible for his care and to make rec-

ommendations for management in accordance with

good medical practice. ... Social policy does not

accept the paternalistic view that the physician may

remain silent because divulgence might prompt the

patient to forego needed therapy.

AMA Opinions, 8.07.

The physician’s important role in the decisionmaking

process points up another important aspect of the ethical

duty to honor the patient’s treatment decisions. As noted

above, the physician has no duty to provide treatment

which he or she believes to be inappropriate. See supra

pp. 7-8. Thus, where the patient demands such treatment,

the physician is ethically bound to refuse. A corollary

to this rule must be that where the physician and patient

concur that further treatment is not called for, an even

11

higher ethical imperative counsels against providing such

treatment.°

In sum, firmly rooted in the respect of the medical

profession for human dignity, the principle of patient

autonomy is one of the fundaments of medical ethics.

The state’s public policy interest in maintaining the

ethical integrity of the medical profession thus demands

that this principle be honored.

B. The Ethical Obligation To Honor A Patient’s De-

cision To Forego Medical Treatment Applies To

Refusal Of Life-Sustaining Medical Treatment.

Nowhere is the principle of patient autonomy placed

under greater strain than in the area of withholding or

withdrawing life-sustaining medical treatments. Here,

the physician’s social commitment to sustain life may

conflict with a patient’s wish that his or her life not be

sustained by artificial means under certain circumstances.

So important is the principle of autonomy, however, that

there is broad consensus that it applies even to the right

to refuse life-sustaining medical treatments. See, e¢.g.,

President’s Commission Report at 43-44; Hastings Center

Report at 7, 19; Presbyterian-University Hospital, Guide-

lines on Foregoing Life-Sustaining Treatment (May

1985) (“Presbyterian-University Hospital Guidelines’),

reprinted in Meisel et als., Hospital guidelines for decid-

ing about life-sustaining treatment: Dealing with health

“limbo”, 14 Critical Care Medicine 239, 243 (1986);

Providence Medical Center, Guidelines On Foregoing

Life-Sustaining Treatment (June 28, 1985); Appleton

Consensus at 702-03. Indeed, one recent study of the

attitudes of clinicians found that the most important fac-

tor in their decision whether to begin artificial nutrition

5 This ethical imperative also has an important practical conse-

quence. Where the patient (or the patient’s surrogate) and physi-

cian concur in the desirability of withholding or withdrawing treat-

ment, a rule of law requiring continuation of such treatment may

find few willing followers in the medical profession.

12

(tube feeding) was the preference of the patient. Smith

& Wigton, Modeling Decisions to Use Tube Feeding in

Seriously Ill Patients, 147 Arch. Intern. Med. 1242

(1987).

The AMA Council also has specifically considered this

issue. The Council analyzes the issue as presenting a

conflict between two aspects of the physician’s social com-

mitment: the duty to sustain life, and the duty to relieve

suffering. AMA Opinions, 2.18. In the Council’s view,

the duty to relieve suffering may encompass permitting

a patient, exercising informed consent, to refuse life-

sustaining medical treatment. “Where the performance

of one duty [to sustain life] conflicts with the other [to

relieve suffering], the choice of the patient, or his family

or legal representative if the patient is incompetent to

act in his own behalf, should prevail.” Jd.

C. The Ethical Obligation To Honor The Patient’s

Decision To Forego Life-Sustaining Medical Treat-

ment Does Not Depend On The Presence Of A

Terminal I]ness.

The medical community is likewise in agreement that

the patient’s right to choose whether to accept life-

sustaining treatment does not depend upon the patient

being terminally ill. Although this is often the context

in which such decisions arise, ‘a patient need not be ter-

minally ill or imminently dying for these decisions to be

ethically permissible.” Hastings Center Report at 5.

The President’s Commission specifically rejected the

presence of “terminal” illness as a decisionmaking factor.

President’s Commission Report at 24-26.

In accordance with the principle of patient autonomy,

the Commission noted that the proximity of death may

seem very different to different patients, and that predict-

ing with any certainty the end of a person’s life is a

“notoriously uncertain” art. Jd. The Commission con-

cluded that “[i]t seems difficult to devise or justify pol-

icies that restrict people’s discretion or to make appro-

13

priate decisions by allowing some choices only to “ter-

minally ill” patients or by denying them other chcices.”

Id. at 26. Accordingly, ethical medical practice requires

that medical professionals respect a patient’s treatment

decision to refuse treatment whether or not the patient

is ‘terminally ill.”

D. The Ethical Obligation To Honor The Patient’s

Decision To Forego Life-Sustaining Medical Treat-

ment Applies Equally To Decisions To Withhold

Treatment Initially, And To Withdraw Treatment

Already Begun.

Nor is the principle of patient autonomy diminished

when the issue is whether to withdraw treatment already

begun, rather than whether to withhold or begin treat-

ment in the first place. Some health care professionals

traditionally considered it more acceptable not to begin

treatment than to withdraw treatment once begun. See,

e.g., President’s Commission Report at 73-74. The Com-

mission properly attributes this attitude to the related

notion that to bring about death by action is more morally

heinous than to do so by omission. Id. Stopping treat-

ment already under way seems more akin to the former,

and thus could be seen as more immoral.

As the Commission points out, however, considerations

of morality actually cut the other way. Most signifi-

cantly, an ethical or legal rule that makes withholding

treatment more acceptable than withdrawing treatment

could deter the commencement of treatment that might

prove beneficial. In many instances, experience with a

treatment is necessary to establish whether it will be

beneficial, either alone or in conjunction with other po-

tential treatments. Physicians must remain free to offer

and withdraw multiple treatments based on their effec-

tiveness and the views of the patient. For this reason,

the Commission concludes that the same considerations

of patient autonomy and informed consent should guide

decisions to withhold or to withdraw treatment. This

14

view now is widely shared in the medical profession.

See AMA Opinions, 2.18; Hastings Center Report at

130-31; American Academy of Neurology (“AAN”),

Position of the American Academy of Neurology on Cer-

tain Aspects of the Care and Management of the Per-

sistent Vegetative State, IV (1989) (“AAN Statement )

(reproduced in Appendix to Brief of Amicus Curiae

American Academy of Neurology in Support of Petition

for a Writ of Certiorari) ; Appleton Consensus at 702-08 ;

_ Presbyterian-University Hospital Guidelines, reprinted in

Meisel et als. at 243.

E. The Ethical Obligation To Honor The Patient’s

Decision To Forego Life-Sustaining Medical Treat-

ment Applies To Artificial Nutrition And Hydra-

tion.

What constitute “medical treatments” for purposes of

applying the patient’s right to forego them? There is

broad agreement that artificial nutrition and hydration

are medical treatments for this purpose. President’s

Commission Report at 90; AMA Opinions, 2.18; Hastings

Center Report at 59-60; Steinbrook & Lo, Artificial Feed-

ing—Solid Ground, Not a Slippery Slope, 318 N. Eng. J.

Med. 286, 288 (1988); Ruark at 30; Presbyterian-

University Hospital Guidelines, I, reprinted in Meisel et

als. at 243.°

6 The Missouri Supreme Court stated that “[t]here is substantial

disagreement on this point among physicians and ethicists.” 760

S.W.2d at 423 (emphasis supplied). In support of this statement,

the court cited the trial testimony of one physician. Id. The court

also attempted ‘to illustrate its point by citing statements of other

amici organizations, to the effect that nutrition and hydration

ought not be treated as medical treatments for this purpose. ; Id.

at n.19. However, none of the organizations whose briefs were cited

for this proposition purport to represent the views of physicians.

Amici respectfully submit that the Missouri Supreme Court's own

authorities amply support the contrary proposition: that there is

no substantial disagreement among physicians as to the status of

artificial nutrition and hydration as medical treatments.

15

Several commentators have pointed out that there is an

important psychological value, to a patient’s family or

treatment team, to providing food and water to the sick.

See, e.g., Lynn & Childress at 17. But treatment of the

patient should be undertaken for the purpose of promot-

ing the patient’s interests, not simply to ameliorate the

feelings of others. Further, nutrition and hydration pro-

vided through nasogastric, gastrostomy, or intravenous

tubing are not eating and drinking. They are tech-

nological processes, accomplished by surgical procedures,

that provide fluid and nutritional material when the ordi-

nary human processes of swallowing, ingestion, or diges-

tion have failed. As such, they cannot meaningfully be

distinguished from other technological processes that re-

place failed body organs or systems. As with these other

technological advances, the decision whether to forego

them must be based on whether the benefits of treatment

outweigh its burdens in the view of the patient. Jd. at

18.

F. The Ethical Obligation To Honor The Patient’s

Decision To Forego Life-Sustaining Medical Treat-

ment Applies To Patients Who Once Had, But No

Longer Possess, Decisionmaking Capacity.

As explained above, the patient’s right to choose whether

or not to forego medical treatment derives from the re-

spect of the medical profession, and of our society gen-

erally, for the dignity and autonomy of the individual.

It is a fundamental component of that respect that a

patient retains his or her individual dignity and au-

tonomy even after neurological damage or degeneration

destroys the patient’s decisionmaking capacity.’ See, e.g.,

Presbyterian-University Hospital Guidelines, IV, re-

7 Amici recognize that somewhat different considerations might

operate for a patient who has never had decisionmaking capacity.

Without taking a position on this issue, amici note simply that

their remarks are addressed only to the issue facing the Court:

that of an individual who once had, but no longer possesses, deci-

sionmaking capacity.

16

printed in Meisel et als. 241, 245. Accordingly, due re-

spect for the patient’s autonomy demands that the

patient’s decision to forego life-sustaining medical treat-

ment be respected even after the patient no longer has

the capacity to state or reiterate that decision.

The ethical consensus in the medical profession adopts

this view. The AMA Council’s Opinions provide that

“Ta] competent, adult patient may, in advance, formulate

and provide a valid consent to the withholding or with-

drawal of life-support systems in the event that injury

or illness renders that individual incompetent to make

such a decision.” AMA Opinions, 2.19. Accord, Hastings

Center Report at 26-29, 78-84; Presbyterian-University

Hospital Guidelines, V, reprinted in Meisel et als., 245-

46: Providence Medical Center, Guidelines On Foregoing

Life-Sustaining Treatment (1985).

A more complex problem is presented when the patient

has failed to leave explicit instructions while in posses-

sion of decisionmaking capacity. There is consensus

within the medical community for how such a patient’s

wishes should be honored.

The Hastings Center Report suggests a structure for

such decisionmaking which is in accordance with the

AMA Council’s position, with the President’s Commission

Report, with the Appleton Consensus, and with good,

ethical medical practice. In general terms, the meth-

odology recommended would permit a surrogate decision-

maker to determine whether the burdens of life-sustain-

ing medical treatment would be viewed by the patient

to outweigh its benefits.

In consultation with other members of the treatment

team, the physician with primary resronsibility for the

patient’s care, in accordance with policies adopted by

the institution housing the patient, must identify a sur-

rogate decisionmaker. Hastings Center Report at 24-25;

President’s Commission Report at 126-32. Cf. Appleton

Consensus (treaiing physician to act as surrogate).

17

Where the patient has not previously identified a sur-

rogate, and there is no court-appointed surrogate with

the requisite authority,® the physician should turn to a

member of the patient’s family, or close friend. Hastings

Center Report at 24-25; President’s Commission Report

at 126-27. The object, as explained in the Appleton Con-

sensus, is to choose from among those persons “who are

available and competent, have been involved with and

concerned about the patient, are knowledgeable about the

patient’s preferences and values, and are willing to apply

the patient’s values to making the decision.” Appleton

Consensus at 702.

The surrogate’s first’ duty is to apply the patient’s

preferences and values, based on what is known, attempt-

ing to choose as the patient would have wanted. Presi-

dent’s Commission Report at 132-34, 186; Hastings Cen-

ter Report at 28; Appleton Consensus at 702. This stand-

ard for decision is often called a “substituted judgment”

standard. President’s Commission Report at 132; Apple-

ton Consensus at 702. The basis for a substituted judg-

ment decision should be any reliable evidence that the

surrogate has about the patient’s specific views, or, when

these are not known, on the patient’s general values,

goals, and desires. President’s Commission Report at

133-34.

If not enough is known to permit a responsible sub-

stituted judgment decision, the surrogate should choose

to promote the patient’s interests as they would probably

be conceived by a reasonable person in the patient’s cir-

cumstances. President’s Commission Report at 134-36;

S Amici do not contend that court appointment is required or

even desirable. Rather, amici merely take the position that if

legal processes have been invoked, the resulting appointments must

be honored. Amici believe the recommendations of the President’s

Commission are in accord with medical ethics and the best medical

practice, that “the cumbersomeness and costs of legal guardianship

strongly militate against its use... .” President’s Commission Re-

port at 131.

18

Hastings Center Report at 28; Appleton Consensus at

702. This corresponds to the AMA Council’s “best inter-

ests” standard. AMA Opinions, 2.18. Guideposts for

making this decision might include, for example, the

belief that ordinarily, “persons would want to preserve

identity, be able to maintain independence and control,

be able to interact with others, have pleasurable experi-

ences, avoid pain and suffering, and avoid being a severe

burden upon others.” Appleton Consensus at 702; see

also President’s Commission Report at 182-83.

A surrogate decisionmaker is not, of course, a perfect

substitute for the patient. In addition to the difficulty of

accurately exercising a patient’s substituted judgment,

or even of determining what a reasonable person in the

patient’s situation would choose, there is the possibility

that the surrogate might have a conflict of interest with

the interests of the patient. See, Areen, The Legal Status

of Consent Obtained from Families of Adult Patients to

Withhold or Withdraw Treatment, 258 JAMA 229, 232-

33 (1987). Because of the possibility of conflict of in-

terest, good medical practice requires that the decision

of a surrogate-to withhold or withdraw life-sustaining

medical treatment be subject to challenge in circum-

stances where it appears that the surrogate’s decision

has been reached in ignorance or in bad faith. See id.

at 234. As Professor Areen suggests, there would be

a presumption in favor of the surrogate’s decision, but

one that could be challenged for good reason. Jd. Ideally,

consensus should be reached among the surrogate, the

patient’s family, and the treatment team. A variety of |

administrative mechanisms for resolving challenges, in-

cluding consultation with religious advisors or a hospital

ethics committee, would comport with good medical prac-

tice. See Hastings Center Report at 32; Appleton Con-

sensus at 702.

19

G. The Ethical Obligation To Honor The Patient’s

Decision To Forego Life-Sustaining Medical Treat-

ment Applies To A Patient In A Persistent Vegeta-

tive State.

Finally, there is broad agreement that when a patient

is irreversibly unconscious, the prior expressed prefer-

ence of that patient, who then had decisionmaking ca-

pacity, to forego life-sustaining treatment should be hon-

ored. As the AMA Council has put it:

Even if death is not imminent but a patient’s coma

is beyond doubt irreversible and there are adequate

safeguards to confirm the accuracy of the diagnosis

and with the concurrence of those who have respon-

sibility for the care of the patient, it is not unethical

to discontinue all means of life-prolonging medical

treatment.

AMA Opinions, 2.18. A commentator employed by the

AMA elsewhere has explained that persons in a persistent

vegetative state (“PVS’) are in an irreversible coma

within the meaning of this opinion. Rymer, Courts Differ

on Disposition of Patient’s Right to Die Cases, 58 The

Citation 92 (1989). Relying on the President’s Commis-

sion Report, the AMA commentator notes that PVS

patients lack any awareness of their environment,

“{p].rsonality, memory, purposive action, social inter-

action, sentience, thought, and even emotional states .. .

pain and suffering . . . joy, satisfaction, and pleasure.”

Id. (quoting President’s Commission Report at 174-75,

180-81).

The view that life-sustaining treatment must ethically

be withdrawn or withheld, in accordance with the prior

expressed wishes of the PVS patient, is shared by the

AAN. As explained in the AAN’s official position state-

ment, PVS is “a form of eyes-open permanent uncon-

sciousness in which the patient has periods of wakeful-

ness and physiologic sleep/wake cycles, but at no time is

the patient aware of himself or his environment.” AAN

Statement, I. The statement explains that primitive re-

20

flexes, such as breathing, are present because the patient’s

brain stem remains functional. However, all voluntary

functions and more complex reflexes are absent, due to

the total loss of cerebral cortical functioning. The AAN

states that the diagnosis of PVS can usually be made

with a high degree of medical certainty in cases of

hypoxischemic encephalopathy ® after a period of one to

three months. The AAN has also concluded that patients

in PVS do not experience pain or suffering, which are

attributes of consciousness requiring cerebral cortical

functioning.

Accordingly, in the view of the AMA and the American

Academy of Neurology, the PVS patient is in a state in

which a medical professional may, indeed must, ethically

honor the stated preference of a patient with capacity

to forego life-sustaining medical treatment. AMA Opin-

ions, 2.18; AAN Statement, III.”

H. Summary.

Prevailing medical ethical standards require that phy-

sicians honor the decisions of patients concerning whether

® A degenerative condition of the brain brought on by oxygen

deprivation.

10 Many medical professionals would go further. In 1988, Law-

rence University sponsored a program entitled “Proceedings of

Guidelines for Non-Treatment Decisions: An International Work-

ing Conference.” Thirty-three delegates (twenty-five physicians

__representing eleven different medical specializations, seven bioethe-

cists and one medical economist) from ten different countries par-

ticipated in drafting The Appleton Consenus: Suggested Inter-

national Guidelines for Decisions to Forgo Medical Treatment, 151

Ugeskrift For Laeger (Journal of the Danish Medical Association)

700 (1989). The delegates agreed that the patient who has been

reliably diagnosed as PVS “has no self-regarding interests. Unless

the patient in the past has requested or the family or caregivers

now can justify continuing life-sustaining treatments, there is no

reason to use those treatments.” Jd. at 703. Five delegates dissented

from this language, stating that they were “unable to accept a cate-

gorical statement which rules out life-sustaining treatments.” Id.

at 705.

21

to accept or forego medical treatment, including life-

sustaining artificial nutrition and hydration. The founda-

tion of these standards—the respect of the medical pro-

fession for the dignity and autonomy of each patient—

demands that they apply just as forcefully to patients

who once had, but no longer possess, decisionmaking

capacity. The ethical integrity of the medical profession

thus depends on maintaining the freedom to participate

with patients and their families (and the surrogates of

patients without decisionmaking capacity) in decisions

concerning the foregoing of life-sustaining medical treat-

ment, and to honor those decisions once made by or on

behalf of a patient.

II. THE DECISION OF THE MISSOURI SUPREME

COURT VIOLATES NANCY CRUZAN’S CONSTI-

TUTIONAL RIGHT OF PRIVACY.

This Court’s cases recognize that the federal Constitu-

tion contains a right of privacy that prohibits the state

from interfering with an individual’s exercise of certain

basic freedoms which are deeply rooted in this Nation’s

history and tradition. Cases from other courts have held

that the patient’s interest in retaining the decisional au-

tonomy to forego life-sustaining treatment is such a

freedom." Because it unduly burdens Nancy Cruzan’s

'! The principles of medical ethics described above—that respect

for the dignity and autonomy of an individual require a physician

to obtain the informed consent of the patient or the patient’s sur-

rogate prior to rendering medical treatment, and to honor the

decision of the patient or surrogate regarding the withdrawal of

such treatment—have found expression in the common law of the

states. As the Missouri Supreme Court recognized, it has long been

well-established that a battery occurs when a physician performs a

medical procedure without valid consent. Cruzan, 760 S.W.2d at

417. This principle applies as well to the continuation of a proce-

dure once the patient has withdrawn consent. However, the Mis-

souri court concluded that under the common law of that State

this right could not be exercised under “hypothetical elroum

stances.” Jd. Thus, the court apparently held that in Missouri

the common law right to informed consent to medical treatment

does not permit an individual with decisionmaking capacity to leave

22

exercise of this right, the decision of the Missouri Su-

preme Court must be reversed.

A. The Cases Of This Court Recognize A Right Of

Privacy Which Protects, Among Other Things, The

Bodily Integrity Of The Individual Where Protec-

tion Of Such Integrity Is Deeply Rooted In This

Nation’s History And Tradition.

In a line of cases beginning with Griswold v. Con-

necticut, 381 U.S. 479 (1965), this Court has recognized

that an unenumerated right of privacy deriving from

various provisions of the federal Constitution prohibits

the state from interfering in an individual’s free choice

of whether and how to engage in certain intimate activi-

ties. Under Griswold, the decision protected is whether

a married couple will make use of contraceptives; under

Roe v. Wade, 410 U.S. 118 (1973), and its progeny,

the decision protected is whether a pregnant woman will

carry a fetus to term, or submit to an abortion; under

an earlier case, Skinner v. Oklahoma, 316 U.S. 535

(1942) (later recognized in Griswold, 381 U.S. at 485,

to deal as well with the right of privacy), the decision

protected is whether to procreate.

A common thread connecting all of these cases is that

the Constitution protects individuals from many state-

ordered invasions of or control over their persons. While

the Court has declined to go so far as to find “an un-

instructions concerning the sorts of medical treatments—life-

sustaining or not—to which that individual refuses consent. The

court also held that the Missouri constitution confers no “un-

fettered” right of privacy such as would permit the withdrawal of

Nancy Cruzan’s nutrition and hydration, id. at 417, and that the

right conferred under the State’s living will statute does not ex-

tend to refusal of nutrition or hydration. Jd. at 419-20. Because

Missouri law is so restrictive, the only protection available to a

Missouri resident who wishes to refuse in advance to be kept alive

by artificial nutrition or hydration should he or she enter a state of

irreversible unconsciousness must be found in the federa] Constitu-

tion.

23

limited right to do with one’s body as one pleases,” Roe,

410 U.S. at 154, or to extend the right of privacy to all

decisions implicating bodily integrity, Bowers v. Hard-

wick, 478 U.S. 186 (1986) (right to privacy does not

encompass right to engage in homosexual sodomy), the

Court has consistently recognized that the interests quali-

fying for protection under the right of privacy include

“those fundamental liberties that are ‘implicit in the con-

cept of ordered liberty,’ such that ‘neither liberty nor

justice would exist if [they] were sacrificed.’” Bowers,

478 U.S. at 191-92 (quoting Palko v. Connecticut, 302

U.S. 319, 325-26 (1937)). Fundamental liberties that

are “deeply rooted in this Nation’s history and tradition”

are protected by the right of privacy. Bowers, 478 U.S.

at 192 (quoting Moore v. City of East Cleveland, 431

U.S. 494, 503 (1977) (Opinion of Powell, J.) ).

Both of these formulations of the interests protected by

the right of privacy are descriptive of the interest of a

patient in deciding for himself or herself whether to sub-

mit to or forego medical treatment. It is difficult to

imagine that liberty or justice could exist in a society

that so ignored the dignity and autonomy of an individ-

ual that the law permitted (or, as here, required) medical

practitioners to perform unwanted medical treatments

on his or her person. Moreover, as the above discussion

of the ethical obligations of the medical profession amply

demonstrates, the rights of patient autonomy and _ in-

formed consent, broadly embraced by the medical pro-

fession, are “deeply rooted in this Nation’s history and

tradition.” Bowers, 478 U.S. at 192.

B. Cases From Other Courts Have Concluded With

Near Unanimity That The Right Of Privacy Neces-

sarily Includes The Right To Forego Unwanted

But Life-Sustaining Medical Treatments.

Only one federal court so far has considered the ques-

tion of whether the constitutional right of privacy encom-

passes the decision whether to forego unwanted but life-

24

sustaining medical treatment. In Gray v. Romeo, 697 F.

Supp. 580 (D.R.I. 1988), the federal district court con-

sidered the case of Marcia Gray, a 49 year-old woman in

a persistent vegetative state due to a cerebral hemor-

rhage. Her husband and legal guardian sought a declara-

tory judgment authorizing him to direct the hospital hous-

ing his wife to remove the gastrostomy tube that provided

her with artificial nutrition and hydration.

In a thoughtful opinion, the trial court concluded that

Marcia Gray’s right of privacy included the right to

refuse life-sustaining medical treatment. Jd. at 586. The

court also concluded that nutrition and hydration sup-

plied through a gastrostomy tube were a form of medical

treatment that could properly be refused. id. Finally,

recognizing that the “value of human dignity” extends to

both competent and incompetent patients, the court con-

cluded that Marcia Gray’s right to forego life-sustaining

nutrition and hydration could be exercised by a court-

appointed Guardian Ad Litem. Id. As explained above,

each one of these decisions by the court permitted the ex-

ercise of Marcia Gray’s right of privacy in a manner

wholly consonant with the ethical standards of the medi-

cal profession. See supra pp. 6-21.

Numerous decisions from the courts of other states

have reached the identical conclusions regarding the scope

of the right of privacy, and the manner of its exercise

on behalf of a person who has lost decisionmaking ca-

pacity. See, e.g., In re Drabick, 200 Cal.App.3d 104, 245

Cal. Rptr. 840 (Cal. App. 6 Dist.) (upholding right of

family member as surrogate to order withdrawal of ar-

tificial nutrition and hydration from PVS patient), cert.

denied, 109 S.Ct. 399 (1988); Brophy v. New England

Sinai Hospital, Inc., 398 Mass. 417, 497 N.E.2d 626

(Mass. 1986) (same) ; Jn re Colyer, 99 Wash.2d 114, 660

P.2d 738 (Wash. 1983) (upholding _ of oe poccad

r as surrogate to order withdrawal of respirator fro

ve ae as In re Quinlan, 70 N.J. 10, 355 A.2d 647

ae

25

(N.J.) (same), cert. denied sub nom. Garger v. New

Jersey, 429 U.S. 922 (1976). Accordingly, as even the

Missouri Supreme Court acknowledged, the great weight

of judicial authority is to the effect that the constitutional

right of privacy encompasses the right of a person who

has lost decisionmaking capacity, through a surrogate, to

forego life-sustaining medical treatment, including arti-

ficial nutrition and hydration. See Cruzan, 760 S.W.2d

at 412 n.4 and accompanying text (citing cases).

C. While Reasonable Regulation In Areas Protected

By The Right Of Privacy Is Permitted In Support

Of Other Important State Interests, Such Regula-

tion“May Not “Unduly Burden” Exercise Of The

Right.

The decisions of this Court also recognize that the

right of privacy is not absolute. The Court stated in Roe

that “some state regulation in areas protected by that

right is appropriate.” 410 U.S. at 154. As the Court

2 The Missouri Supreme Court makes much of the assertion

that the right recognized in Quinlan, the leading case in this area,

was limited “to circumstances in which the patient is terminally

ill.” Cruzan, 760 S.W.2d at 415, 421. The court seemed critical of

the “everbroadening” application of the right in subsequent cases

to persons who were not terminally ill. Jd. at 421. While not

specifically approving the decision in Quinlan itself, the court’s

characterization of that case as demonstrating “restraint” sug-

gests that it is the application of the right to patients not termi-

nally ill after Quinlan that is truly problematic. Jd. at 415.

Amici note that the Missouri Supreme Court’s premise is flawed.

In only one of the three cases cited by the court was the patient

terminally ill. Superintendent of Belchertown State School v.

Saikewicz, 373 Mass. 728, 370 N.E.2d 417 (Mass. 1977) (death

predicted to occur in a matter of weeks or months without treat-

ment). Karen Quinlan was a PVS patient, of whom the court found

that “exactly how long she would live without [her respirator] is

unknown.” Quinlan, 355 A.2d at 655. Similarly, in In re Storar/In

re Eichner, 52 N.Y.2d 363, 438 N.Y.S.2d 266, 420 N.E.2d 64 (N.Y.),

cert. denied sub nom. Storar v. Storar, 454 U.S. 858 (1981), the

patient for whom the court upheld the decision to withdraw life

Support was a PVS patient. The New York Court of Appeals made

no finding that he was terminally ill.

26

made clear only last term in the context of the right to

choose an abortion, state regulation in support of “ ‘im-

portant and legitimate’ interests” is permissible, even in

an area protected by the right of privacy, as long as

such regulation “does not impose an undue burden on a

woman’s abortion decision.” Webster v. Reproductive

Health Services, 57 U.S.L.W. 5023, 5030 (Opinion of

Rehnquist, J., three justices concurring), 5031 (Opinion

of O’Connor, J.) (July 3, 1989).

In Webster, a majority of five justices agreed that

Missouri’s law requiring a woman seeking an abortion

after the twentieth week to submit to certain tests to

determine if the fetus is viable did not unduly burden

the woman’s liberty to exercise her right. In the context

of the instant case, therefore, Missouri may constitu-

tionally regulate the exercise of the right to forego life-

sustaining medical treatment in support of other state

interests, so long as its regulations do not “unduly bur-

den” the exercise of the right. Examination of the Mis-

souri Supreme Court’s decision conclusively demonstrates

that Missouri law, as pronounced by that court, is un-

duly burdensome to the exercise of the patient’s right to

forego life-sustaining medical treatment.

D. The Missouri Supreme Court’s Decision Unduly

Burdens Exercise Of The Right Of Privacy By

Denying Any Right To Withdraw Life-Sustaining

Nutrition And Hydration.

The constitutional right to refuse further life-sustaining

medical treatment, by withdrawing nutrition and hydra-

tion supplied through a gastrostomy tube, cannot be ex-

ercised in the State of Missouri. This is so because the

Missouri Supreme Court has found that the State’s “un-

qualified” interest in life, Cruzan, 760 S.W.2d at 420,

is so powerful that it will virtually always overcome the

patient’s right to refuse treatment. According to the Mis-

souri Supreme Court, the issue is not whether artificial

nutrition and hydration are medical treatments which can

properly be refused. The issue rather “is whether feed-

eee

27

ing and providing liquid to Nancy is a burden to her.”

Id. at 423 (emphasis in original). Although the court’s

standard is an appropriate one, its application of that

standard to Nancy’s situation creates a rule of law that

violates the ethical integrity of the medi i

cal

and the right of privacy. ata

The Missouri Court based its decision on tw

First, the court found that the evidence of cad po

erences was “woefully inadequate” to permit a court to

approve a substituted judgment decision. Jd. at 424

Second, the court found that, even assuming sufficient

evidence were available, the State’s “unqualified” interest

in life would overcome the expressed preference of an in-

dividual to forego life-sustaining treatment unless it

could be shown that such treatment was more “burden-

some” than beneficial to the individual. Jd. The court

later equates “burden” with pain to the individual. Jd.

On the question of evidence, the trial court found that

about a year prior to the accident which caused her con-

dition, Nancy had expressed to her housemate the feel-

ing “that she would not wish to continue living if she

couldn’t be at least halfway normal.” Jd. at 433 (judg-

ment of trial court quoted in dissenting opinion of Hig-

gins, J.). Her family and friends described Nancy as a

vivacious, active, outgoing, independent person who pre-

ferred to do for herself.” Jd. Based upon Nancy’s own

expression, upon this description of her life style, and

upon “other statements to family and friends,” the court

found by clear and convincing evidence that Nancy

“would not wish to continue her present exi

it j existen

hope as it is.” Jd. P ce without

Tn holding that, as a matter of law, evidence such as

this is insufficient to permit the exercise of substituted

judgment by a surrogate decisionmaker, the Missouri

court rejects the accumulated ethical wisdom of the medi-

cal profession. As described above, medical professionals

would honor the decision of a surrogate to withdraw life-

28

sustaining medical treatment on the basis of reliable evi-

dence of the patient’s specific views, and when these are

not known, of the patient’s general values, goals, and

desires. See supra p. 17. Nancy’s statements to her

housemate—an individual with no incentive to dissemble

—certainly constitute “reliable evidence” of Nancy’s spe-

cific views under any normaitve understanding of the

term. The court’s other findings—of Nancy’s vivacious,

active, outgoing and independent nature—likewise con-

stitute “reliable evidence” that her general values, goals,

and desires would be incompatible with a vegetative ex-

istence, and further support her housemate’s description

of her views.

Moreover, the Missouri Supreme Court’s decision

would never permit a “best interests” judgment to be

made by a surrogate. The court’s decision thus condemns

the PVS patient who, like most, has not executed some

formal expression of his or her preferences, to a long

vegetative existence, regardless of the affront to dignity

which that person would feel at being artificially main-

tained in such a state.

More important, even if the court were prepared to

accept some evidence of the patient’s preferences as suffi-

cient to permit the exercise of substituted judgment, the

court’s opinion would permit the withdrawal of artificial

nutrition and hydration oniy if it could be shown that

continued treatment was “burdensome”, i.e., painful, to

the patient. As the AAN Statement demonstrates, PVS

patients are insensible to pain; consequently, the court’s

standard could never be met by a PVS patient. Such an

absolute prohibition of a particular course of conduct

within an-area protected by the right of privacy is the

clearest case imaginable of a regulation which is “unduly

burdensome” to the exercise of that right, in violation

of the principle set forth in Webster.”

18 Jt is clear that Missouri’s living will statute cannot be em-

ployed to make a formal expression of a contrary preference. That

29

The Missouri Supreme Court’s error is its arbitrarily

narrow definition of what sorts of medical treatment an

individual might regard as “burdensome.” Nancy Cru-

zan’s family and Guardian Ad Litem have concluded that

Nancy would believe the burdens to Nancy of a persistent

vegetative existence—without feeling, emotion, thought,

pleasure, or hope of recovery, and sustained by artificial

nutrition and hydration—outweigh any benefits of con-

tinued treatment. Nancy’s body also is burdened by the

presence of the artificial feeding tube, and might be

subjected to future imvasive procedures if infection en-

sues. The tube’s access site might break down, requiring

additional surgery. While she would not feel the physical

pain associated with these events, they would be debili-

tating to her overall physical condition, degrading even

further the state to which the Missouri Supreme Court

has condemned her. Under these circumstances, it is

highly reasonable for Nancy’s family and co-guardians

to have concluded that Nancy would find the burdens

of artificial nutrition and hydration to outweigh its bene-

fits, and choose to have these treatments discontinued.

While decrying the right of any person to assume

another’s “right of privacy choices” in the absence of

“clear and convincing, inherently reliable evidence,”

Cruzan, 760 S.W.2d at 425, the court’s decision does pro-

cisely that. By its decision that the only potential burden

that could justify the surrogate exercise of Nancy’s right

to forego life-sustaining medical treatment would be

physical pain to Nancy, the court simply assumes the role

statute specifically exempts artificial nutrition and hydration from

the list of treatment processes that a person may direct to be with-

held or withdrawn. See Cruzan, 760 S.W.2d at 419-20. While the

constitutionality of that statute need not be at issue if the right of

privacy permits alternative means for a person to direct that such

treatments be withheld or withdrawn, the statute would be uncon-

stitutional if it were the exclusive means for directing the with-

holding or withdrawing of treatment in that State. See supra

note 11.

30

of surrogate decis:onmaker itself, and performs its own

exercise of substituted judgment on Nancy’s behalf.

The Missouri Supreme Court has no better knowledge

as to what would be Nancy Cruzan’s preferences in this

matter than her family, friends, and Guardian Ad Litem.

Moreover, by rejecting the collective judgment of those

individuals, arrived at in consultation with the medical

professionals invol .d in Nancy’s case, the court has cre-

ated a rule of law fundamentally at odds with the ethical

obligations of the medical profession. Amici respectiully

submit that the rule of law created by the Missouri

Supreme Court is at odds with the public policy of main-

taining the ethical integrity of the medical profession,

and with the constitutional right of privacy.

CONCLUSION

For the foregoing reasons the decision of the Missouri

Supreme Court should be reversed.

Respectfully submitted,

STEPHAN E. LAWTON

Counsel of Record

THOMAS N. BULLEIT, JR.

REED SMITH SHAW & McCCLAY

1200 18th Street, N.W.

Washington, D.C. 20036

(202) 457-6100

ELLEN COVNER WEISS

3400 Spruce Street

Philadelphia, PA 19104

(215) 662-6746

September 1, 1989 Attorneys for the Amicus Curiae