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

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IN THE Seog eigen ann,

Supreme Court of the United States

OCTOBER TERM, 1988

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 Petition for . Writ of Certiorari to the

Supreme Court of the State of Missouri

BRIEF OF

AMERICAN ACADEMY OF NEUROLOGY

AS AMICUS CURIAE

IN SUPPORT OF THE PETITION

JOHN H. PICKERING

Counsel of Record

EVAN H. CAMINKER

SHARON E. CONAWAY

WILMER, CUTLER & PICKERING

2445 M Street, N.W.

Washington, DC 20037-1420

(202) 663-6000

Attorneys for American

May 5, 1989 Academy of Neurology

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TABLE OF CONTENTS

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INTEREST OF AMICUS CURIAE .....................-..---+-

ARGUMENT

%

CONCLUSION

APPENDIX A

THE DECISION BELOW RAISES ISSUES OF

CRITICAL NATIONAL IMPORTANCE BE-

CAUSE IT INTERFERES WITH PHYSI-

CIANS’ ABILITY TO CARE AGGRESSIVELY

FOR UNCONSCIOUS PATIENTS WHILE

HOPE OF RECOVERY REMAINS AND RE-

QUIRES CONTINUED TREATMENT AFTER

HOPE NO LONGER REMAINS .........................

A.

B.

The Persistent Vegetative State Patient and

the Importance of the Decision Below ..........

The Cruzan Majority’s Ruling Requires the

Perpetual Maintenance of Artificial Life

Support for PVS Patients Who, by Defini-

tion, Have No Hope of Recovery ....................

The Irrevocability of an Initial Decision to

Employ Artificial Life-Support Technologies

Will Discourage Their Use in the First In-

stance, Thus Endangering Patients’ Lives

and Violating Accepted Principles of Medical

a

. The Requirement That Physicians Provide

Useless and Unwanted Medical Treatment to

PVS Patients Is Fundamentally at Odds

Both With Principles of Medical Ethics and

With an Accurate Assessment of the Bene-

fits and Burdens of Such Treatment ..............

i

TABLE OF AUTHORITIES

Cases Page

Bouvia v. Superior Court, 179 Cal. App. 3d 1127,

225 Cal. Rotr. BOT (1GBG) 2nncncccceenccteere ee 9

Brophy v. New England Sinai Hospital, Inc., 39

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

In re Conroy, 98 N.J. 321, 486 A.2d 1209 (1985) .... 9

In re Farrell, 108 N.J. 335, 529 A.2d 404 (1987)... 9

In re Gardner, 534 A.2d 947 (Me. 1987) ................. 9

In re Guardianship of Grant, 109 Wash. 2d 545,

747 P.2d 445 (1987) (en bane) ............................. 9

In re Jobes, 108 N.J. 394, 529 A.2d 434 (1987)... 9

In re Peter, 108 N.J. 365, 529 A.2d 419 (1987) -.... 9

In re Quinlan, 70 N.J. 10, 355 A.2d 647, cert. de-

nied, 429 U.S. BBB (GTO) cncccececceceescoue 5

McConnell v. Beverly Enterprises—Connecticut,

Ine., 209 Conn. 692, 553 A.2d 596 (1989)... 6

Rasmussen v. Fleming, 154 Ariz. 207, 741 P.2d 674

(Ariz. 1987) (en bame) ........-+-.10+..0eeeee 9

Schloendorff _v. Society of New York Hospital, 211

N.Y. 125, 105 N.E. 92 (1914), overruled on

other grounds, Bing v. Thunig, 2 N.Y.2d 656,

143 N.E.2d 3, 1638 N.Y.S.2d 3 (1957) --.............. 10

Winston v. Lee, 470 U.S. 753 (1985).............----...-..- 10

Other Authorities

American Academy of Neurology, Position of the

American Academy of Neurology on Certain

Aspects of the Care and Management of the

Persistent Vegetative State Patient (April 21,

1988), reprinted in Neurology, Jan. 1989, at

| eee sancuccesccoeeseceseseeuesnausnueieesniene passim

American Medical Association, Withholding or

Withdrawing Life-Sustaining Medical Treat-

ment, Current Opinions of the Council on Ethi-

cal and Judicial Affairs, Opinion 2.18 (1986)... 6, 11

Cranford, The Persistent Veqetative State: The

Medical Reality (Getting the Facts Straight),

Hastings Ctr. Rep., Feb. March 1988, at 27_..... 3

Hastings Center, Guidelines on the Termination of

Life-Sustaining Treatment and the Care of the

Dying (1967) ..........:c.-ccss-<sssssese 6

ill

TABLE OF AUTHORITIES—Continued

Lynn & Childress, Must Patients Always Be Given

Food and Water?, Hastings Ctr. Rep., Oct. 1983,

ESSE EES TESISIESOS Oe SO

President’s Commission for the Study of Ethical

Problems in Medicine and Biomedical and Be-

havioral Research, Deciding to Forego Life-

Sustaining Treatment (U.S. Govt. Printing Of-

er scseeuvessvecreunseceees

U.S. Congress, Office of Technology Assessment,

Life-Sustaining Technologies and the Elderly,

OTA-BA-306 (U.S. Govt. Printing Office 1987) ..

Page

IN THE

Supreme Cut of the United Stairs

OCTOBER TERM, 1988

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. McCCANSE, Guardian ad litem,

Respondent.

On Petition for a Writ of Certiorari to the

Supreme Court of the State of Missouri

BRIEF OF

AMERICAN ACADEMY OF NEUROLOGY

AS AMICUS CURIAE

IN SUPPORT OF THE PETITION

INTEREST OF AMICUS CURIAE

The American Academy of Neurology (the “Academy

is a non-profit organization comprised of over 10,000

neurologists throughout the United States. Because the

Missouri Supreme Court’s 4-3 ruling in this case will sig-

nificantly and adversely affect these physicians’ medical

practices, the Academy submits this brief on behalf of

its members in support of the Petition for Writ of Cer-

”)

2

tiorari. Letters from all parties to the case below indi-

eating their consent to the filing of this brief have been

filed with the Clerk of the Court.

Neurologists are called upon routinely to evaluate in-

juries to the brain and to advise patients and their fam-

ilies or guardians regarding appropriate medical treat-

ment. Often, neurologists must decide swiftly in the early

stages of treatment whether to recornmend the use of ar-

tificial life support technologies to sustain bodily func-

tions while they pursue specific treatment strategies.

These decisions are made with the knowledge that such

life support technologies can maintain a patient’s bodily

functions for many years after the treatment strategies

have failed and the patient has permanently lost all con-

sciousness. Because the ruling below renders the initial

decision to employ life support irrevocable in many cases,

the ruling interferes with neurologists’ ability to recom-

mend certain medical procedures and with patients’ and

their families’ ability freely to give informed consent to

such procedures.

The members of the Academy are particularly con-

cerned about the implications of the decision below for

the thousands of patients with the most severe form of

neurologic disability, those in a “persistent vegetative

state’ (“PVS patients’). In an effort to provide medical

and ethical guidance to doctors in this important area,

the Academy has adopted a formal statement of policy

regarding the treatment of such patients. See American

Academy of Neurology, Position of the American Acad-

emy of Neurology on Certain Aspects of the Care and

Management of the Persistent Vegetative State Patient

(April 21, 1988), reprinted in Neurology, Jan. 1989, at

125 ‘hereinafter ““Academy Statement’) (Appendix A).

The Academy Statement reflects careful deliberation

by the Academy after thorough review of medical, ethi-

cal, and legal literature, and the extensive clinical ex-

perience of Academy members with PVS patients and

3

their families. The Statement is founded on the accepted

principle of medical ethics that neurologists, like all

physicians, have a duty to promote aggressive treatment

of unconscious patients for so long as hope of recovery

remains. The corollary principle mandates that when

hope is gone, sound medical ethics permit neurologists

to terminate all treatment, including artificial nutrition

and hydration, if desired by their patients or the patients’

legal representatives. Neurclogists have a strong inter-

est in practicing medicine in a manner consistent with

their code of ethics, an interest severely compromised by

the ruling below.

On behalf of its member neurologists, and on the basis

of its stated interests, the Academy urges this Court to

grant certiorari in this critically important case.

ARGUMENT

I. THE DECISION BELOW RAISES ISSUES OF

CRITICAL NATIONAL IMPORTANCE BECAUSE

IT INTERFERES WITH PHYSICIANS’ ABILITY

TO CARE AGGRESSIVELY FOR UNCONSCIOUS

PATIENTS WHILE HOPE OF RECOVERY RE-

MAINS AND REQUIRES CONTINUED TREAT-

MENT AFTER HOPE NO LONGER REMAINS

A. The Persistent Vegetative State Patient and the

Importance of the Decision Below

It is estimated that more than 10,000 patients—like

Nancy Cruzan—are being maintained in a_ persistent

vegetative state in the United States today, and the num-

ber will increase significantly in the near future.' These

patients are the unfortunate product of advances in med-

ical technology over the past 20 years. Increased use

of various therapeutic measures such as cardiopulmonary

resuscitation, which until recently were either unknown

1 Cranford, The Persistent Vegetative State: The Medical Real-

ity (Getting the Facts Straight), Hastings Ctr. Rep., Feb./March

1988, at 27, 31.

4

or not widely practiced, represents an important medical

advance. Through these techniques, patients who suffer

a cessation of respiratory and perhaps cardiac function

can, at times, be restored to physical life. Many such

patients are rescued from the brink of death and re-

stored to a meaningful life. But PVS patients cannot be

restored. While not brain-dead, PVS patients have sus-

tained massive and permanent brain dimage and a com-

plete loss of consciousness from which there can be no

recovery. The persistent vegetative state is the most com-

plete and severe form of neurologic disability.

PVS patients are totally and permanently unconscious

and devoid of thought, emotion, and sensation. The Acad-

emy defines the persistent vegetative state as “a form of

eyes-open permanent unconsciousness in which the patient

has periods of wakefulness and physiological sleep ‘wake

cycles,” but in which the patient is at all times totally

unaware of herself or her environment. Academy State-

ment $I. (App. A at la). This condition results when

a person suffers severe damage to the cerebral hemi-

spheres of the brain, which control the “higher ‘thinking’

functious.” but retains a normal brain stem, which con-

trols reflexive functions. See President’s Commission for

the Study of Ethical Problems in Medicine and Biomedical

and Behavioral Research, Deciding to Forego Life-Sus-

taining Treatment 175 (U.S. Govt. Printing Office 1983)

(hereinafter “President’s Commission”). Thus, PVS pa-

tients exposed to certain stimuli may exhibit reflexive

responses including grimacing, swallowing, unfocused eye

movement, and pupillary response to light. /d. However,

the loss of all cerebral cortical functions means that

“!pjersonality, memory, purposive action, social interac-

tion, sentience, thought, and even emotional states are

gone... as are joy, satisfaction, and pleasure.” Id. at

174-75, 181-82.

Because PVS patients retain a healthy brain stem, they

generally do not lose their capacity tu breathe, a reflexive

function. But they do lose their ability to chew and

swallow in a normal manner, a cognitive function. Acad-

emy Statement $1.A. (App. A at la). Accordingly, a

ra 5

respirator is generally not needed for life support of

PVS patients, but artificial nutrition and hydration are

necessary.

The attempt of the majority below to characterize the

ongoing provision of nutrition and hydration through a

gastrostomy tube as routine care and not medical treat-

ment is not supported by legal, medical, or ethical prece-

dent and contradicts practical medical reality. The tube

must be implanted surgically with prior, written con-

sent for the procedure. After surgery, the patient re-

ceives a pre-mixed solution of nutrients pumped into the

body through a machine. Although nurses perform the

relatively uncomplicated procedure of administering the

solution, the life support process requires continual and

careful monitoring by a physician.’ All learned medical

and medico-ethical organizations agree that provision of

nutrition and hydration through such a tube is a medical

2 The majority refused to recognize that use of a gastrostomy tube

constitutes medical treatment, but noted the finding in Quinlan that

Karen Quinlan’s respirator was medical “treatment . . . so extraor-

dinary and so invasive that the state’s interest paled in comparison.”

Cruzan v. Harmon, Petitioner’s Appendix at A30 (citing In re

Quinlan, 70 N.J. 10, 355 A.2d 647, cert. denied, 429 U.S. 922 (1976) ).

But the medical community finds no basis for distinguishing between

a respirator and a gastrostomy tube in terms of their status as

medical treatment. In each case, as a result of an accident or other

trauma, the body loses the ability to perform certain functions on

its own and a machine takes over. If a patient cannot breathe, air

is pumped in through a respirator; if a patient cannot swallow,

fluids and nutrition are pumped in through a surgically implanted

tube. Both devices replace normal bodily functions which are com-

promised by the illness. Both are medical treatment.

The majority’s attempt to draw a distinction between initial

insertion of the tube (which it considered medical treatment) and

the ongoing use of the tube (which it described as “not heroically

invasive”) is also insupportable. Pet. App. at A34. The power to

consent to treatment necessarily must include the power to order

the treatment stopped once it has proved ineffective. See Presi-

dent’s Commission at 73-77; Academy Statement § IV.B.-C. (App.

A at 6a-7a).

6

treatment that a patient has a right to forgo.* Likewise,

most higher courts that have considered the status of ar-

tificial nutrition and hydration have determined them to

be medical treatment. See, e.g., McConnell v. Beverly

Enters.-Conn., Inc., 209 Conn. 692, 705, 553 A.2d 596,

603 (1989) (‘‘{t|he applicable case law has by and large

concluded that .. . there is no logical distinction between

removal of a respirator and removal of a gastrostomy

tube’) (citing cases). The majority’s contrary conclu-

sion below is both opposed to established medical practice

and offensive to good medical ethics.

Alsy erroneous is the attempt of the Attorney General

of Missouri to characterize the questions surrounding

forced continued provision of artificia! nutrition and hy-

dration to PVS patients as “extremely narrow” and of

little public importance. Brief in Opposition of Respond-

ents Harmon and Lamkins at 12, 16. In fact, proper

treatment—including the use of artificial nutrition and

hydration—for PVS patients has grown into a medical

problem of national significance. This is apparent, not

only from the Academy’s Statement, but also from the

attention given to the matter by a Presidential Com-

mission, the Office of Technology Assessment of the Con-

gress, the American Medical Association, and bio-ethicists

as cited in note 3 above.

3 Academy Statement §§II., III. (App. A at 2a-6a); President’s

Commission at 190; American Medical Association, Withholding or

Withdrawing Life-Sustaining Medical Treatment, Current Opinions

of the Council on Ethical and Judicial Affairs, Opinion 2.18 (1986)

(hereinafter “AMA Opinion 2.18”) (‘“{ilife prolonging medical

treatment includes medication and artificially or technologically

supplied respiration, nutrition or hydration”); Hastings Center,

Guidelines on the Termination of Life-Sustaining Treatment and

the Care of the Dying 59-62 (1987); U.S. Congress, Office of Tech-

nology Assessment, Life-Sustaining Technologies and the Elderly,

OTA-BA-306 at 275-329 (U.S. Govt. Printing Office 1987).

7

B. The Cruzan Majority’s Ruling Requires the Per-

petual Maintenance of Artificial Life Support for

PVS Patients Who, by Definition, Have No Hope

of Recovery

PVS patients are incapable of feeling pain or other-

wise suffering because such sensations are attributes of

consciousness requiring cerebral cortical functioning that

these patients lack. Academy Statement §1.D. (App. A

at 2a). Given this aspect of the persistent vegetative

state, the Missouri Supreme Court’s interpretation and

application of the right to refuse medical treatment pre-

cludes entirely the withdrawal of artificial nutrition and

hydration from a PVS patient until death occurs from

other causes

The majority below grudgingly conceded that a fed-

eral, privacy-based right to refuse treatment might ex-

ist.* It then purported to balance the individual’s inter-

est in exercising this right against the state’s asserted

abstract interest in the preservation of all biological

life, even if devoid of human consciousness. The ma-

jority concluded that the state’s interest will always

supersede the individual’s rights unless (if ever) con-

tinued treatment is painful or imposes some other burden

on the patient. Finding that the continued supply of

nutrients and fluids through a tube surgically implanted

in Nancy Cruzan’s stomach did not impose any burden

on her, the majority held that the state’s interest pre-

vailed and artificial life support must continue.*

4 Pet. App. at A21-A25. The majority also recognized a qualified

common law right to refuge treatment grounded in the doctrine of

informed consent, and it included that right among the interests of

the patient that it weighed against those of the state. Jd. at A20-

A21, A25, A29.

5 See Cruzan, Pet. App. at A36-A37 (central issue “is whether

feeding and providing liquid to Nancy is a burden to her’) (em-

phasis in original); id. at A388 (“[gliven the fact that Nancy is

alive and that the burdens of her treatment are not excessive for

her, we do not believe her right to refuse treatment . . . outweighs

the [state’s interest in preserving her life]’’).

8

As applied to PVS patients, the majority’s “balancing”’

process is a meaningless exercise. As explained above,

continued medical treatment of any kind can never be

painful or physically burdensome to a PVS patient be-

cause she lacks the cognitive capacity to experience such

sensations. Hence, the Cruzan majority’s reasoning dic-

tates that artificial life support, once initiated for a PVS

patient, must be continued indefinitely in all cases. Such

support may be discontinued only when some other phys-

iological breakdown occurs—perhaps only after many

years—that neither the support system in place nor

other medical procedures can remedy.°

C. The Irrevocability of an Initial Decision to Employ

Artificial Life-Support Technologies Will Discour-

age Their Use in the First Instance, Thus Endan-

gering Patients’ Lives and Violating Accepted

Principles of Medical Ethics

Until an unconscious patient is reliably diagnosed as

being in a persistent vegetative state, the prognosis for

recovery of cerebral cortical functions is uncertain. The

diagnosis of PVS usually cannot be made with medical

certainty “until the patient’s complete unconsciousness has

lasted a prolonged period—usually one to three months

.’ Academy Statement §IV.A. (App. A at 6a). A

physician’s ethical duty aggressively to seek to cure pa-

tients while there is still hope of recovery dictates that

a physician treating an unconscious patient urge the

patient to accept (through her family or legal represent-

ative) artificial life support. Artificial life support

measures, including gastrostomy feeding tubes, ensure

that the patient will benefit from any spontaneous re-

covery of consciousness or from successful medical treat-

ment. At present such advice is ordinarily followed.

® There was medical testimony in the trial court that Nancy, who

was then only 30 years old, could exist as long as 30 years in the

same vegetative state if the artificial nutrition and hydration were

continued. Pet. App. at A8, A26, A38.

§

But such advice is much less likely to be either given

or heeded if, as the Cruzan majority’s holding requires,

the initial decision to employ artificial life support is

irrevocable. Because of an understandable desire to avoid

the considerable risk that such authorization will con-

demn the patient to years of PVS status, physicians will

hesitate to advise, and families will be much less likely

to authorize, artificial nutrition and hydration for pa-

tients whose prognosis is grim but not hopeless. As one

court stated, “|s]uch a rule [of irrevocability] could

discourage families and even doctors from even attempt-

ing certain types of care and could thereby force them

into hasty and premature decisions to allow a patient to

die.” In re Conroy, 98 N.J. 321, 370, 486 A.2d 1209,

1234 (1985).7 Thus, the Cruzan majority’s rule not only

would discourage the practice of ethical medicine,* but

ultimately would undermine the state’s asserted interest

in preserving life.’

7 See also Brophy v. New England Sinai Hosp., Inc., 398 Mass.

417, 438, 497 N.E.2d 626, 638 (1986); Lynn & Childress, Must

Patients Always Be Given Foud and Water?, Hastings Ctr. Rep.,

Oct. 1983, at 17, 19-20.

8 Numerous state courts have relied on principles of medical

ethics to guide them in cases concerning PVS patients. See Ras-

mussen v. Fleming, 154 Ariz. 207, 217, 741 P.2d 674, 684 (Ariz.

1987) (en banc); In re Gardner, 534 A.2d 947, 954 (Me. 1987);

Brophy, 398 Mass. at 439, 497 N.E.2d at 638; In re Johes, 108 NJ.

394, 417, 529 A.2d 434, 446 (1987); In re Peter, 108 N.J. 365, 381-

82, 529 A.2d 419, 427-28 (1987); In re Farrell, 108 N.J. 335, 350-51,

529 A.2d 404, 411-12 (1987); In re Guardianship of Grant, 109

Wash. 2d 545, 554-55, 747 P.2d 445, 450 (1987) (en banc); Bouvia

v. Superior Court, 179 Cal. App. 3d 1127, 1141, 225 Cal. Rptr. 297,

303-04 (1986).

® It may be possible to interpret Cruzan so as to avoid this result,

but doing so would create an even worse nightmare. The state

might attempt to preclude doctors and families from taking irrevo-

cability into account during early treatment decisions by compelling

them to employ all available means of artificial life support in the

first instance.

Given the majority’s conclusion that the state’s interest always

outweighs the patient’s rights where treatment imposes no burden

10

D. The Requirement That Physicians Provide Useless

and Unwanted Medical Treatment to PVS Patients

Is Fundamentally at Odds Both With Principles of

Medical Ethics and With an Accurate Assessment

of the Benefits and Burdens of Such Treatment

A physician’s duty aggressively to promote the well-

being of a patient presumes that some chance of improve-

ment or recovery remains. However, the Cruzan major-

ity held that artificial life support must be maintained

even after hope is lost, apparently on the assumption that

physicians still have a duty to “care”: “|W|hen we

permit ourselves to think that care is useless if it pre-

serves the life of the embodied human being without

restoring cognitive capacity, we fall victim to the old

delusion that we have failed if we cannot cure and that

there is, then, little point to continue care.” Pet. App. at

A36 (citation omitted) (emphasis in original).

In the context of a PVS patient’s existence, “care’’ may

have symbolic meaning for the caregiver, the family, and

society, but it has no meaning for the patient. The pa-

tient cannot understand or even perceive her care, much

less be comforted by it. Therefore, she cannot be re-

garded as benefitting from care in any meaningful sense.

Hence, ethical principles recognize that where the family,

(of the sort recognized by the majority), the majority’s reasoning

usually would sustain such state compulsion. However, the result—

forced irrevocable artificial support for all patients under all circum-

stances—is clearly incompatible with the principle of bodily in-

tegrity inherent in the Fourteenth Amendment. Cf., e.g., Winston

v. Lee, 470 U.S. 753, 761 (1985) (state cannot compel criminal

defendant to undergo surgery to retrieve bullet necessary for state’s

prosecution because of “intrusion upon the individual’s dignitary

interests in personal privacy and bodily integrity”) ; id. at 765 (sur-

gery absent patient’s informed consent is demeaning and intrusive) ;

Schloendorff v. Society of N.Y. Hosp., 211 N.Y. 125, 129-30, 105

N.E. 92, 93 (1914) (Cardozo, J.) (recognizing the “right to deter-

mine what should be done with [one’s] own body”), overruled on

other grounds, Bing v. Thunig, 2 N.Y.2d 656, 143 N.E.2d 3, 163

N.Y.S.2d 3 (1957).

11

speaking for the patient, feels that “care” has become a

euphemism for the meaningless prolongation of vegetative

life, the physician has no contrary duty to maintain

such care. Academy Statement §§ II.A., III. (App. A at

2a-5a) ; AMA Opinion 2.18.

Moreover, a physician’s ethical duty is not to preserve

life or well-being at all costs, but rather to do so in a

manner consistent with the patient’s right to self-

determination. See Academy Statement § II.D.1. (App.

A at 4a) (“The recognition of a patient’s right to self-

determination is central to the medical, ethical, and legal

principles relevant to medical treatment decisions.’’).

Hence, state-compelled maintenance of useless and unde-

sired artificial life support for PVS patients not only di-

rectly infringes the patient’s constitutional guarantee of

fundamental liberty, but it does so in a manner that

interferes with physicians’ ethical responsibility to avoid

harming the dignity of their patients. The Cruzan ma-

jority ignored the established principle of medical ethics

that, “[a]t all times, the dignity of the patient should be

maintained.” '*° In the process, it withheld from Nancy

Cruzan a core aspect of humanity by requiring her and

many others sharing her misfortune to be kept “alive”

for years to come in an undignified vegetative state."' As

another high state court realized,

10 AMA Opinion 2.18. Furthermore,

[ijn deciding whether the administration of potentially life-

prolonging medical treatment is in the best interest of the

patient who is incompetent to act in his behalf, the physician

should determine what the possibility is for extending life

under humane and comfortable conditions and what are the

prior expressed wishes of the patient and attitudes of the fam-

ily or those who have responsibility for the custody of the

patient.

Jd. (emphasis added).

11 As recounted in the Petition for Certiorari, Nancy Cruzan

is completely dependent upon others for care. Her body is stiff

and so severely contracted that her fingernails cut into her

12

In certain, thankfully rare, circumstances the burden

of maintaining the corporeal existence degrades the

very humanity it was meant to serve. ... The duty

of the State to preserve life must encompass a recog-

nition of an individual’s right to avoid circumstances

in which the individual himself would feel that efforts

to sustain life demean or degrade his humanity.

Brophy v. New England Sinai Hosp., Inc., 398 Mass. 417,

434, 497 N.E.2d 626, 635 (1986).

By insisting on the preservation of life at all costs

and regardless of circumstances, the decision below pre-

vents physicians from taking into account patients’, their

families’, and society’s interests in maintaining dignity.

It thus precludes physicians from “caring” for their

PVS patients in the only way that “care” has any mean-

ing once the PVS diagnosis has been confirmed.

CONCLUSION

For the foregoing reasons, and for those stated in the

Petition for a Writ of Certiorari, the Petition should be

granted.

Respectfully submitted,

JOHN H. PICKERING

Counsel of Record

EVAN H. CAMINKER

SHARON E. CONAWAY

WILMER, CUTLER & PICKERING

2445 M Street, N.W.

Washington, DC 20037-1420

(202) 663-6000

Attorneys for American

May 5, 1989 Academy of Neurology

wrists. Her face is red, puffy and swollen, and ske drools on

herself. She is missing teeth. Her bathing, oral care and per-

sonal feminine hygiene, including menses, are cared for by

others. She must be turned every few hours to prevent bedsores.

Petition for Writ of Certiorari at 5 (citation omitted).

APPENDIX

la

APPENDIX A

POSITION OF THE AMERICAN ACADEMY OF

NEUROLOGY ON CERTAIN ASPECTS OF THE

CARE AND MANAGEMENT OF THE

PERSISTENT VEGETATIVE STATE PATIENT *

Adopted by the Executive Board,

American Academy of Neurology,

April 21, 1988, Cincinnati, Ohio

I. The persistent vegetative state is a form of eyes-

open permanent unconsciousness in which the patient has

periods of wakefulness and physiological sleep/wake cy-

cles, but at no time is the patient aware of him- or her-

self or the environment. Neurologically, being awake but

unaware is the result of a functioning brainstem and the

total loss of cerebral cortical functioning.

A. No voluntary action or behavior of any kind is

present. Primitive reflexes and vegetative functions that

may be present are either controlled by the brainstem or

are so elemental that they require no brain regulation at

all.

Although the persistent vegetative state patient is gen-

erally able to breathe spontaneously because of the in-

tact brainstem, the © .pacity to chew and swallow in a

normal manner is lost because these functions are volun-

tary, requiring intact cerebral hemispheres.

B. The primary basis for the diagnosis of persistent

vegetative state is the careful and extended clinical ob-

servation of the patient, supported by laboratory studies.

Persistent vegetative state patients will show no _ be-

havioral response whatsoever over an extended period of

et ee ko a

* Reprinted in Neurology, Jan. 1989, at 125.

2a

time. The diagnosis of permanent unconsciousness can

usually be made with a high degree of medical certainty

in cases of hypoxic-ischemic encephalopathy after a pe-

riod of 1 to 3 months.

C. Patients in a persistent vegetative state may con-

tinue to survive for a prolonged period of time (“pro-

longed survival”) as long as the artificial provision of

nutrition and fluids is continued. These patients are not

“terminally ill.”

D. Persistent vegetative state patients do not have the

capacity to experience pain or suffering. Pain and suffer-

ing are attributes of consciousness requiring cerebral

cortical functioning, and patients who ure permanently

and completely unconscious cannot experience these

symptoms.

There are several independent bases for the neurologi-

eal conclusion that persistent vegetative state patients do

not experience pain or suffering. ¥

First, direct clinical experience with these patients

demonstrates that there is no behavioral indication of any

awareness of pain or suffering.

Second, in all persistent vegetative state patients stu-

died to date, postmortem examination reveals overwhelm-

ing bilateral damage to the cerebral hemispheres to a

degree incompatible with consciousness or the capacity to

experience pain or suffering.

Third, recent data utilizing positron emission tomo-

graphy indicates that the metabolic rate for glucose in

the cerebral cortex is greatly reduced in persistent vege-

tative state patients, to a degree incompatible with con-

sciousness.

II. The artificial provision of nutrition and hydration

is a form of medical treatment and may be discontinued

in accordance with the principles and practices govern-

3a

ing the withholding and withdrawal of other forms of

medica! treatment.

A. The Academy recognizes that the decision to dis-

continue the artificial provision of fluid and nutrition

may heve special symbolic and emotional significance for

the parties involved and for society. Nevertheless, the

decision to discontinue this type of treatment should be

made in the same manner as other medical decis.vas, i.e.,

based on a careful evaluation of the patient’s diagnosis

and prognosis, the prospective benefits and burdens of

the treatment, and the stated preferences of the patient

and family.

B. The artificial provision of nutrition and hydration

is analogous to other forms of life-sustaining treatment,

such as the use of the respirator. When a patient is

unconscious, both a respirator and an artificial feeding

device serve to support or replace normal bodily func-

tions that are compromised as a result of the patient’s

illness.

C. The administration of fluids and nutrition by medi-

cal means, such as a G-tube, is a medical procedure,

rather than a nursing procedure, for several reasons.

1. First, the choice of this method of providing fluid

and nutrients requires a careful medical judgment as to

the relative advantages and disadvantages of this treat-

ment. Second, the use of a G-tube is possible only by the

creation of a stoma in the abdominal wall, which is un-

questionably a medical or surgical procedure. Third, once

the G-tube is in place, it must be carefully monitored by

physicians, or other health care persennel working under

the direction of physicians, to insure that complications

do not arise. Fourth, a physician’s judgment is neces-

sary to monitor the patient’s tolerance of any response to

the nutrients that are provided by means of the G-tube.

2. The fact that the placement of nutrients into the

tube is itself a relatively simple process, and that the

4a

feeding does not require sophisticated mechanical equip-

ment, does not mean that the provision of fluids and

nutrition in this manner is a nursing rather than a

medical procedure. Indeed, many forms of medical treat-

ment, including, for example, chemotherapy or insulin

treatments, involve a simple self-administration of pre-

scription drugs by the patient. Yet such treatments are

clearly medical and their initiation and monitoring re-

quire careful medical attention.

D. In caring for hopelessly ill and dying patients,

physicians must often assess the level of medical treat-

ment appropriate to the specific circumstances of each

case.

1. The recognition of a patient’s right to self-

determination is central to the medical, ethical, and legal

principles relevant to medical treatment decisions.

2. In conjunction with respecting a patient’s right to

self-determination, a physician must also attempt to pro-

mote the patient’s well-being, either by relieving suffer-

ing or addressing or reversing a pathological process.

Where medical treatment fails to promote a patient’s

well-being, there is no longer an ethical obligation to

provide it.

3. Treatments that provide no benefit to the patient

or the family may be discontinued. Medical treatment

that offers some hope for recovery should be distinguished

from treatment that merely prolongs or suspends the

dying process without providing any possible cure. Medi-

cal treatment, including the medical provision of artifi-

cial nutrition and hydration, provides no benefit to pa-

tients in a persistent vegetative state, once the diagnosis

has been established to a high degree of medical cer-

tainty.

III. When a patient has been reliably diagnosed as

being in a persistent vegetative state, and when it is

clear that the patient would not want further medical

5a

treatment, and the family agrees with the patient, all

further medical treatment, including the artificial provi-

sion of nutrition and hydration, may be forgone.

A. The Academy believes that this stardard is con-

sistent with prevailing medical, ethical, and legal prin-

ciples, and more specifically with the formal resolution

passed on March 15, 1986 by the Council on Ethical and

Judicial Affairs of the American Medical Association,

entitled “Withholding or Withdrawing Life-Prolonging

Medical Treatment.”

B. This position is consistent with the medical com-

munity’s clear support for the principle that persistent

vegetative state patients need not be sustained indefi-

nitely by means of medical treatment.

While the moral and ethical views of health care pro-

viders deserve recognition, they are in general secondary

to the patient’s and family’s continuing right to grant

or to refuse consent for life-sustaining treatment.

C. When the attending physician disagrees with the

decision to withhold all further medical treatment, such

as artificial nutrition and hydration, and feels that such

a course of action is morally objectionable, the physi-

cian, under normal circumstances, should not be forced

to act against his or her conscience or perceived under-

standing of prevailing medical standards.

In such situations, every attempt to reconcile differ-

ences should be made, including adequate communication

among all principal parties and referral to an ethics com-

mittee where applicable.

If no consensus can be reached and there appear to be

irreconcilable differences, the health care provider has an

obligation to bring to the attention of the family the

fact that the patient may be transferred to the care of

another physician in the same facility or to a different

facility where treatment may be ciscontinued.

6a

D. The Academy encourages health care providers to

establish internal consultative procedures, such as ethics

committees or other means, to offer guidance in cases of

apparent irreconcilable differences. In May 1985, the

Academy formally endorsed the voluntary formation of

multidisciplinary institutional ethics committees to func-

tion as educational, policy-making, and advisory bodies to

address ethical dilemmas arising within health care in-

stitutions.

IV. it is good medical practice to initiate the artificial

provision of fluids and nutrition when the patient’s

prognosis is uncertain, and to allow for the termination

of treatment at a later date when the patient’s condition

becomes hopeless.

A. A certain amount of time is required before the

diagnosis of persistent vegetative state can be made with

a high degree of medical certainty. It is not until the

patient’s complete unconsciousness has lasted a prolonged

period—usually 1 to 3 months—that the condition can

be reliably considered permanent. During the initial pe-

riod of assessment and evaluation, it is usually appro-

priate to provide aggressive medical treatment to sustain

the patient.

Even after it may be clear to the medical professionals

that a patient will not regain consciousness, it may still

take a period of time before the family is able to accept

the patient’s prognosis. Once the family has had suffi-

cient time to accept the permanence of the patient’s con-

dition, the family may then be ready to terminate what-

ever life-sustaining treatments are being provided.

B. The view that there is a major medical or ethical

distinction between the withholding and withdrawal of

medical treatment belies common sense and good medical

practice, and is inconsistent with prevailing medical,

ethical, and legal principles.

7a

C. Given the importance of an adequate trial period

of observation and therapy for unconscious patients, a

family member must retain the ability to withdraw con-

sent for continued artificial feedings well after initial

consent has been provided. Otherwise, consent will have

been sought for a permanent course of treatment before

the hopelessness of the patient’s condition has been de-

termined by the attending physician and is fully appre-

ciated by the family.