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

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( [supreme Court, US. \"

j (0) PILED

No. 88-1503 SEP 1 1989

IN THE L_

Supreme Court of the United States

OCTOBER TERM, 1989

>_>

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

LESTER L. and JOYCE CRUZAN,

Petitioners,

—Y—

DIRECTOR OF MISSOURI DEPARTMENT OF HEALTH, ‘and

ADMINISTRATOR OF THE MISSOURI REHABILITATION

CENTER AT MT. VERNON,

—_V—

THAD C. MCCANSE, Guardian ad litem,

Respondents,

Respondent.

ON A WRIT OF CERTIORARI TO THE

SUPREME COURT OF THE STATE OF MISSOURI

BRIEF OF AMICUS CURIAE CONCERN FOR

DYING IN SUPPORT OF PETITIONERS

Of Counsel: *HENRY PUTZEL, III

GEORGE J. ANNAS

80 East Concord Street

Boston, MA 02118

(617) 638-4626

Suite 1600

530 Fifth Avenue

(212) 382-0066

September 1, 1989 *Counsel of Record

GILES R. SCOFIELD, III

New York, New York 10036-5101

— Raion <6

oh awe *

QUESTIONS PRESENTED

1. Is There a Fundamental Constitutional Right to Refuse

Medical Treatment?

2. Is Artificial Alimentation a Form of Medical Treatment

That Individuals Can Refuse?

3. Do Individuals Automatically Lose Their Right to Refuse

Medical Treatment When They Become Incompetent, or

Can Others Exercise it on Their Behalf?

TABLE OF CONTENTS

QUESTIONS PRESENTED qo... .cccccccccccccccces

SUMMARY OF THE ARGUMENT.................

I. ANGLO-AMERICAN JURISPRUDENCE HAS

Il.

Ill.

IV.

CONSISTENTLY UPHELD THE RIGHT OF

PATIENTS TO CONTROL MEDICAL

TREATMENT DECISIONS, INCLUDING

DECISIONS ABOUT LIFE-SUSTAINING

THE RIGHT TO REFUSE LIFE-SUS-

TAINING TREATMENT INCLUDES THE

RIGHT TO FORGO ARTIFICIAL ALIMEN-

DUR trAtEGSEGubeseneeceasaceecece:

BECAUSE THESE CONSTITUTIONAL

RIGHTS ARE iMPO®t4NT TO INCOM-

PETENT AS WELL AS COMPETENT

PATIENTS, SURROGATE MEDICAL

DECISIONMAKING IS "NECESSARY TO

INSURE THAT THEY SURVIVE A DETER-

MINATION OF INCOMPETENCY .........

THE REASONING UNDERLYING THE

DECISION BELOW LEADS TO RESULTS

CONTRARY TO THE INTERESTS THE

CONSTITUTION PROTECTS AND OUGHT

ill

If Missouri’s Definition of Who is Termi-

nally Il] or Imminently Dying is Permitted to

Condition Patients’ Options, the Right to

Refuse Treatment Becomes Meaningless ...

If Guardians Are Unable to Have Artificial

Alimentation Withdrawn, Some Patients

Who Might Have Benefitted from Artificial

Alimentation May Not Receive It.........

The Balance of Interests Struck by the Mis-

souri Supreme Court Will Cause Treatment

to be Rendered in Situations that Affront an

Individual’s Personal Dignity.............

State Decisionmaking on Behalf of Previ-

ously Incompetent Patients Disenfranchises

the Family and Guardians and Will Substi-

tute State-Determination for Self-Deter-

mination by Those who Know the Patient

PAGE

TABLE OF AUTHORITIES

Cases PAGE

Akron v. Akron Center for Reproductive Health, 462

OD, GER Gh eee ncbdcccccccccdncucctsoseesssi 6, 16

Barber v. Superior Court, 147 Cal. App.3d 1006, 195

Cal. Retr. 404 (IDES)... oc cccccccccccccscess teeeees 6, 20

In re Barry, 445 So.2d 365 (Fla. Dist. Ct. App. 1984) .. 18

Bartling v. Superior Court, 163 Cal. App.3d 186, 209

Cal. Retr. ZO (ISSR) 2. cccccccccccccesccsccccccs 5, 6, 20

In re Bayer, No. 4131 (N.D. Burleigh Co., 12/11/87) .. 25

Bouvia v. Superior Court, 179 Cal. App.3d 1127, 225

Cal. Retr. 207 CIDER). . oc ccccccccsscvcccsccccccces 5, 6

Bowen v. American Hospital Association, 476 U.S. 610

CO nc k0kcbaunbeoetccccchincdeshensssedesesse 17

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

GOT, GBT PET Ge CER cc ccccccccccscccescenss 13, 19

In re Browning, 543 So.2d 258 (Fla. Dist. Ct. App.

SEG cia wed cedcecccedhiessdcdcdenateub bacadeces 13, 21

Cleveland v. Board of Education v. LaFleur, 414 U.S.

GE CI oo weckdbndcacdcdwendévesescusevesennnsas 6

In re Conroy, 98 N.J. 321, 486 A.2d 1209 (1985)...13, 19, 23

Corbett v. D’Alessandro, 487 So.2d 368, (Fla. Dist. Ct.

App.), rev. den. 492 So.2d 1331 (Fla. 1986)......... 13, 20

Cruzan v. Harmon, 760 S.W.2d 408 (1988) ........... 3,4

Delio v. Westchester County Medical Center, 129

A.D.2d 1, 516 N.Y.S.2d 677 (2d Dept. 1987)........ 13

PAGE

In re Doe, 45 Pa. D. & €.3d 371 (Phila. C. P. 1987)... 5

In re Drabick, 200 Cal. App.3d 185, 245 Cal. Rptr. 840

SE sa oneness cawenensedssasensecscasces 13, 19, 20, 27

Eisenstadt v. Baird, 405 U.S. 438 (1972).............. 6

In re Farrell, 108 N.J. 335, 529 A.2d 404 (1987)....... 5

In re Gardner, 534 A.2d 947 (Me. 1987)........... 13, 19, 20

Gray v. Romeo, 697 F. Supp. 580 (D.R.I., 1988)...... 6, 13

Griswold v. Connecticut, 381 U.S. 479 (1965) ......... 6, 7

Harris v. McRae, 448 U.S. 297 (1980)................ 6

Hazelton v. Powhatan Nursing Home, Va. Cir. Ct. Fair-

fax County, No. 98287, August 29, 1986 (slip op. at 6),

appeal den.; record no. 860814 (Va. Sept. 2, 1986)... 22

H.L. v. Matheson, 450 U.S. 398 (1981)............... 17

In re Jobes, 108 N.J. 394, 529 A.2d 434 (1987) ....12, 13, 19

Jacobson v. Massachusetts, 197 U.S. 11 (1905)........ 6, 8

John F. Kennedy Memorial Hospital v. Bludworth, 452

So.2d 921 (Fla. 1984) PE EOLA BED pr eT Ce eee 7,19

In re L.H.R., 253 Ga. 439, 321 S.E.2d 716 (1984) ..... 7, 18

Loving v. Virginia, 388 U.S. 1 (1967) ................ 17

In re Lydia E. Hall Hospital, 116 Misc.2d 477, 455

es a Ps a, HEED bce ncceccecescccsiver 5

Maher v. Roe, 432 U.S. 464 (1977) .......... ccc eeee 6, 16

McConnell v. Beverly Enterprises-Connecticut, Inc., 209

COU, Gia, Fae Gace BD CUE oc cccccccccceects i

PAGE

Meyer v. Nebraska, 262 U.S. 390 (1923).............. 17

Michael H. v. Gerald D., 57 U.S.L.W. 4691 (1989).... 7, 18

Olmstead v. U.S., 277 U.S. 438 (1928) ...........006- 6

Parnam v. J.R., G42 U.5. SOS CISTI). oc ccsccccccccces 17

Pau v. Davis, 434 U.S. God CISTS). occ ccccccccccccses 6

In re Peter, 108 N.J. 365, 529 A.2d 419 (1987)........ 13, 19

Pierce v. Society of Sisters, 268 U.S. 510 (1925)....... 17

Prince v. Massachusetts, 321 U.S. 158 (1944) ......... 17

Fublic Health Trust of Dede County v. Wons, 541 So.2d

I I a eG atl aie ia LN a eid a 20

In re Quinlan, 70 N.J. 10, 355 A.2d 647, cert. den. sub

nom. Garger v. New Jersey, 429 U.S. 922, 97 S. Ct.

Se Sy Se cd odeeekecatveceeses 7

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

SG Las LORS US ASEM E RAEN SED EE LO EREAAD ESCORT 6, 17, 19

In re Requena, 213 N.J. Super. 475, 517 A.2d 886 (Ch.

Div.), aff’d, 213 N.J. Super. 443, 517 A.2d 869 (App.

SG Lect 6h dacddcad cade etacenes éoen odes 12

Rochin v. California, 342 U.S. 165 (1965) .......... +. 6

BODO ©. THE, GED We UBD GIGI occ cccccciccccecccs 6

In re Rosebush, Mich. Cir. Ct., Oakland Co., No. 88-

Pe EE GG, SI ov obec ceebckcccccecosses 18

Satz v. Perlmutter, 362 So.2d 160 (Fla. Dist. Ct. App.

1978), approved 379 So.2d 359 (Fla. 1980).......... 5

Schloendorff v. Society of New York Hospital, 211 N.Y.

es Se OT Se I av vb ocavaadeevess¥oeucn6 sn 0% 7

Vii

PAGE

Schmerber v. California, 384 U.S. 757 (1966) ......... 6

Skinner v. Oklahoma, 316 U.S. 535 (1942)............ 6, 17

Skinner v. Railway Labor Executives’ Association, 57

CPt es Ge Ec ce ccccsdsvcvcccccccaveccces 6

Strachan v. John F. Kennedy Memorial Hospital, 109

PE.5. Sab, SHO Ae BOS Gee oc ce cccsscccccsccces 27

Superintendent of Belchertown State School v. Saike-

wicz, 373 Mass. 728, 370 N.E.2d 417 (1977) ........ 9 |

United States v. Rutherford, 442 U.S. 544 (1979)...... 21

In re Westchester County Medical Center, 72 N.Y.2d

SUT, GEE FEO Gee COPMED osc cc ccccescccsccvess 27

Whalen v. Roe, 429 U.S. 589 (1977) ..........eeeeees 6, 16

Winston v. Lee, 470 U.S. 753 (1985) ..........20000e- 8

In re Yetter, 62 Pa. D. & C.2d 619 (Northampton C. P.

EERIE re eT Tee ee Tree eT TT Tee ee Te TT 5

Statute

Mo. Stat. Ann., sections 459.010 (3) and (4) .......... 20

Regulations

ee oo bide occ dadbseentuanddaneda ens 10

ee ee EO a 6 6:9:00,00.6506040000006406bnCnnaS 10

ep Ge ee I io cc ci ee eb esccdeedvavecenceen 14

Vili

PAGE

Miscellaneous

Annas, The Rights of Patients (1989 ed.)............. 5

Annas, ef al., “The Right to Refuse Treatment: A Model

Act’’, 73 Am. J. Pub. Health 918 (1983) ........... 5

Areen, ‘‘The Legal Status of Consent Obtained from

Families of Adult Patients to Withhold or Withdraw

Consent’’, 258 J.A.M.A. 229 (1987) ............... 18

Beauchamp and Childress, Principles of Medical Ethics

RE SR A PO ere Pee Poe ee ee 21

Callahan, Setting Limits (1987).........0cccceeeeeees 28

Dresser and Boisaubin, ‘‘Ethics, Law and Nutritional

Support’’ 145 Arch. Int. Med. 122 (1985)........... 15

Faden and Beauchamp, A History and Theory of

ee cc eeuueeewennne 7, 16

Freed, ‘‘Quality of Life: The Physician’s Dilemma’’, 65

Arch. Phys. Med. Rehab. 109 (1984)............... 28

Fuller, Legal Fictions I a ih i es ae a la ke 17

Hastings Center, Guidelines on the Termination of Life-

Sustaining Treatment and the Care of the Dying

Pap ¢ishCtde awe keee area es Gale ooh. passim

Imbus and Zawacki, ‘‘Autonomy for Burned Patients

When Survival is Unprecedented’’, 297 N. Eng. J.

DERE. FEW CEPT EP oss cvcccccccccsccessccscesetecnce 5

Johnson, ‘‘The Death-Prolonging Procedures Act and

Refusal of Treatment in Missouri’’, 30 St. Louis U. L.

Fi bcs tnéedaccsckesendedubdesudiadases 20

Joint Commission for the Accreditation of Health Care

Organizations, Hospice Care Standards Manual

EN 5 56053440 50SKR ESO ekees besdeabeasieeles 14, 21

PAGE

Joint Commission for the Accreditation of Health Care

Organizations, Long Term Care Standards Manual

Pc. cheb aduvelsundedebaddadesebcuesdeuueess.s 18

Katz and Capron, Catastrophic Diseases: Who Decides

IE 6. 04.066 064606s scenes ceunesteens 6

Keyserlingk, Sanctity of Life or Quality of Life (Law

Reform Commission of Canada, 1979) ............. 28

Landsman, “Terminating Food and Water: Emerging

Legal Rules’’, in Lynn (ed.), infra. at 135-49........ 12

Lo and Dornbrand, ‘‘Guiding the Hand That Feeds’’,

311 N. Eng. J. Med. 402 (1984) ................... 26

Lo and Johnson, ‘‘Clinical Decisions to Limit Treat-

ment’’, 93 Ann. Int. Med. 764 (1980) .............. 23

Lynn (ed.), By No Extraordinary Means (1989) ....... passim

Lynn, ‘‘Legal and Ethical Issues in Palliative Care’’, 12

Seminars in Oncology 476 (1985) .................. 15

Lynn and Childress, ‘‘Must Patients Always Be Given

Food and Water ?’’, in Lynn (ed.), supra, 47-60

DRS sebeedneandentds deaneeeeediadenesee4 15, 23, 26

Major, ‘‘The Medical Procedures for Providing Food

and Water: Indications and Effects’’, in Lynn (ed.),

a ia 0 ech nb kdeb oenceneecdscansaene 11

Maynard and Muth, “The Choice to End Life as a

Ventilator-Dependent Quadriplegic’, 68 Arch. Phys.

I gece eenuwheneankwensé% 5

National Hospice Association, The 1988 Guide to the

ee ooo co ac auceaenvense ses 15

Neu and Kjellstrand, ‘‘Stopping Long-Term Dialysis: An

Empirical Study of Withdrawal of Life-Supporting

Treatment’’, 314 N. Eng. J. Med. 14 (1986) ........ 5

Newman, ‘‘Treatment Refusals for the Critically and

Terminally Ill: Proposed Rules for the Family, the

Physician and the State’’, 3 N.Y.L.S. Hum. Rts. Ann.

Be GED 665500006 k6ise denedaswnnsnadsséa00ense

Pennock, Democratic Political Theory (1979) .........

President’s Commission for the Study of Ethical Prob-

lems in Medicine and Biomedical and Behavioral

Research, Deciding to Forego Life-Sustaining Treat-

PAGE

SRS GD 6 ko ck 66 cdws . Nea deerenestsessccvesse passim

President’s Commission for the Study of Ethical Prob-

lems in Medicine and Biomedical and Behavioral

Research, Making Health Care Decisions, Vol. |

SP ks ou nGc6b0d on anudreeeseee eb hensde ds ances

Reiser and Anbar, The Machine at the Bedsidz (1984)..

Rhoden, ‘‘Litigating Life and Death’’, 102 Harv. L. Rev.

fer ore rete Tee roe eee

Roberts and Kjellstrand, ‘‘Choosing Death: Withdrawal

from Chronic Dialysis Without Medical Reason’’, 223

Acta MieG. Feame. 161 CIGGE). ....ccccccccccccccsces

Ruark, ef al., ‘‘Initiating and Withdrawing Life Sup-

port’? 318 N. Eng. J. Med. 25 (1988)...............

Rulkin and Lukashok, ‘‘Rx for Dying: The Case for

Hospice Care’? 318 N. Eng. J. Med.°376 (1988).....

Schmitz and O’Brien, ‘‘Observations on Nutrition and

Hydration in Dying Cancer Patients’’, in Lynn (ed.),

FL PPP TS OPT CPTETEUTE TTL TT TTT Tere

Starr, The Social Transformation of American Medicine

SE ded ce dededees cekhechudsaaeaeckeeeseen chee

Steinbrook and Lo, ‘‘Artificial Feeding: Solid Ground,

Not a Slippery Slope’’, 318 N. Eng. J. Med. 286 (1988)

PAGE

Story, Commentaries on the Constitution of the United

ck bh ein oe cbadadnnsbencncckseecees 7

Strump and Evans, ‘‘Physical Restraint of the Hospital-

ized Elderly: Perceptions of Patients and Nurses’’, 37

Nursing Research 132 (1988) ..............cccceeee 25

U.S. Congress, Office of Technology Assessment, Life-

Sustaining Technologies and the Elderly (1987) ..... passim

Veatch, Death, Dying and the Biological Revolution:

Our Last Quest for Responsibility (1989) ........... 22

Weber, ‘‘Substituted Judgment Doctrine: A Critical

Analysis’’, 1 Issues in Law and Medicine 131 (1985) . 16

INTEREST OF AMICUS CURIAE

Concern for Dying (hereinafter ‘‘Concern’’) is a national,

private, not-for-profit educational council organized and incor-

porated in 1967 to address the legal, medical, ethical and social

issues involved in the care and treatment of dying patients,

which include respect for a patient’s right to forgo life-

sustaining treatment. Since its founding, Concern has distrib-

uted over eight million copies of the Living Will, the document

first and most frequently associated with an individual’s right

to refuse life-sustaining treatment.

Through educational and other programs, Concern supports

the proposition that decisions to apply, withhold or withdraw

medical care and technology are a matter of personal, not medi-

cal, judgment, and that such decisions should be made in

accordance with a patient’s wishes, values and beliefs.

Concern has participated as amicus curiae in cases concern-

ing these issues and has contributed in an advisory capacity to

major studies of these issues. Because of its expertise in the

practical issues regarding terminal care decisionmaking and the

care of patients who wish to forgo further treatment, Concern

respectfully submits this brief to provide the Court with infor-

mation pertaining to both the legal questions and the ethical,

medical and social aspects of the issues that this case raises.’

SUMMARY OF THE ARGUMENT

This is a straightforward ‘‘right to refuse treatment’’ case,

not a novel ‘‘right to kill’’ case. Dozens of cases like this one

have been litigated across the country since the 1976 case of

Karen Ann Quinlan, where the New Jersey Supreme Court con-

cluded that Karen Quinlan’s parents could refuse life-sustaining

treatment on her behalf. When it first appeared the Quinlan

case was widely hailed, and it has been consistently followed by

other courts. Many, if not most, Americans-have said at one

1 The letters consenting to the participation of amicus curiae in this

case are on file with the Clerk of the Court.

time or another, ‘‘I] hope | never end up like Karen Quinlan,”’

meaning they hope they are never in a permanent coma, kept

alive by machines; that they will be permitted to die naturally.

The case of Nancy Cruzan raises issues just like those raised in

the case of Karen Ann Quinlan, except that while Ms. Quinlan

required both a mechanical ventilator and artificial alimenta-

tion to live, Ms. Cruzan requires only the latter. Both young

women were unexpectedly injured, both in a persistent vegeta-

tive state, both left only general statements of their wishes, and

in both cases, their parents sought to have medical treatment

ended. The inventions of new medical technologies have seemed

to some to require the invention of new laws, as if medical tech-

nologies, not individual citizens, had rights. But new laws are

not needed. Medical care has always been based on consent, not

compulsion. Individuals have a common law and a fundamen-

tal constitutional right to refuse treatment, and this right must

extend to artificial alimentation to be meaningful in the context

of modern medicine. The state does have an interest in preserv-

ing life, but that interest is never greater than the individual’s

own interest in making personal treatment decisions.

Citizens do not lose their common law and constitutional

rights simply by becoming incompetent. On the other hand,

incompetent patients are not able to personally exercise their

right to refuse treatment. In recognition of this many individ-

uals have resorted to executing “‘living wills’’ to record their

treatment preferences, and to appointing surrogates to make

treatment decisions for them in case of incompetence. These

decisionmaking mechanisms have been widely endorsed by both

courts and legislatures. But what if someone is suddenly ren-

dered permanently comatose and has not made her wishes spe-

cifically known regarding the type of treatment that would be

required to maintain her in her permanent coma? We can take

one of three courses: always provide treatment, never provide

treatment, or make a decision based either on what the individ-

ual would want (substituted judgment) or, if this cannot be per-

suasively determined, on what is in the person’s best interests.

Amicus suggests that always treating everyone for the good of

the state, as suggested by the Missouri Supreme Court, is an

insensitive rule that fails to give adequate consideration to val-

ues other than autonomy, including personal dignity and family

decisionmaking. The evidence in this case was sufficient for the

trial judge to conclude as a fact that Nancy Cruzan would

decide to order artificial alimentation discontinued if she were

to speak to us. That the Cruzans went to court for this decision

hardly constitutes ‘‘unfettered autonomy.” Accordingly, the

decision of the Missouri Supreme Court should be reversed and

the trial court’s decision reinstated. In the alternative, the case

should be remanded to the Missouri Supreme Court so it can

develop a decisionmaking procedure that permits guardians to

make treatment decisions consistent with the known wishes or

best interests of their wards, as the law permits everywhere but

Missouri.

1. pane dh ENT ADULTS HAVE A COMMON LAW AND

STITUTIONAL RIGHT TO REFUSE MEDIC

TREATMENT >

The Missouri Supreme Court’s decision to deny the petition

of Nancy Cruzan’s parents and guardians to exercise her right

to refuse medical treatment on her behalf was an almost inevita-

ble result of the court’s misstatement of the case as a “right to

kill” or ‘‘right to die’’ case, rather than a “right to refuse treat-

ment’’ case. In the court’s words, ‘‘This is a case in which we

are asked to allow the medical profession to make Nancy die by

starvation and dehydration. . . We are asked to hold that... . '

[Nancy Cruzan] must die.’’ Cruzan v. Harmon, 760 S.W.2d

‘8, 412 (1988) (emphasis added). The reason for this unique

characterization of the case seems to be the Missouri Supreme

Court's recognition of the centrality of the right to refuse treat-

ment in both common and constitutional law, and of the com-

parative illegitimacy of the “‘right to die.’’ The attempt

however, fails. This case is just like the Karen Quinlan case and

similar to the more than fifty other cases from sixteen states

that the Missouri court summarily dismisses. It is a case where

an adult’s right to refuse medical treatment is being contested.

That this right is at the core of liberty in the United States

requires little elaboration, and it is thus not surprising that a

court seemingly determined to compel medical treatment would

seek to distance its opinion from the well-established right of

the individual to refuse it.

The Missouri Supreme Court itself notes that ‘‘[t]he common

law recognizes the right of individual autonomy over decisions

relating to one’s health and welfare,’’ id., at 416, and further,

that the doctrine of informed consent has been developed by the

courts ‘‘in recognition of the value society places on a person’s

autonomy and as the primary vehicle by which a person can

protect the integrity of his body.’’ Jd. at 417. The common law

right to refuse treatment is not disputed. The Missouri court is

less enthusiastic about including the right to refuse medical

treatment under the ‘‘right of privacy,’’ but ultimately does not

reject this conclusion. Instead the court attempts to narrow the

constitutional right to refuse treatment by saying, ‘‘We carry

grave doubts as to the applicability of privacy rights to deci-

sions to terminate the provision of food and water to an incom-

petent patient.’’ Jd. at 418.

Anticus respectfully suggests that this Court harbor no such

doubts on this central issue. Under any reasonable method of

interpreting the Constitution, the right to refuse invasive medi-

cal treatment is inherent in the fundamental right of liberty, a

right expressly acknowledged by the New Jersey Supreme

Court’s Quinlan ruling in 1976, but a feature of Anglo-

American law since liberty began. Concerning Karen Quinlan’s

constitutional right to refuse treatment the New Jersey Supreme

Court wrote simply:

Presumably [the constitutional right of privacy] is broad

enough to encompass a patient’s decision to decline medi-

cal treatment under certain circumstances, in much the

Same way as it is broad enough to encompass a woman’s

decision to terminate pregnancy under certain conditions.

Matter of Quinlan, 70 N.J. 10, 40, 355 A.2d 647, 663 (1976)

Every appellate court since 1976 that has reached the consti-

tutional issue has agreed with this conclusion. Amicus suggests

that so little effort was expended by the New Jersey Supreme

Court and the others that have followed its lead on this issue,

precisely because the fundamental constitutional status of the

right to refuse treatment is essentially self-evident. Individuals

cannot be treated against their will without forcibly restraining

them and depriving them of their liberty; and invading their

bodies physically against their will demeans them and strips

them of their dignity. Annas, The Rights of Patients, 83-84 (2d

ed., 1989).

Accordingly, the law acknowledges that patients’ wishes con-

trol decisions concerning chemotherapy, radiation treatments,

amputations and other surgeries, respirators, burn treatment,

cardiopulmonary resuscitation, renal dialysis and artificial

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

v. Perlmutter, 362 So.2d 160 (Fla. Dist. Ct. App. 1978), aff’d

379 So.2d 359 (Fla. 1980); Jn re Doe, 45 Pa. D. & C. 3d 371

(Phila. C. P. 1987); Jn re Yetter, 62 Pa. D. & C. 2d 619 (North-

ampton C.P. 1973); Bartling v. Superior Court, 163 Cal.

App.3d 186, 209 Cal. Rptr. 220 (1984); Bouvia v. Superior

Court, 179 Cal. App.3d 1127, 225 Cal. Rptr. 297 (1986); Jn re

Lydia E. Hall Hospital, 116 Misc.2d 477, 455 N.Y.S.2d 706

(Sup. Ct. 1982); Maynard and Muth, ‘‘The Choice to End Life

as a Ventilator-Dependent Quadriplegic’’, 68 Arch. Phys. Med.

Rehab. 862 (1987); Neu and Kjellstrand, ‘‘Stopping Long-Term

Dialysis: An Empirical Study of Withdrawal of Life-

Supporting Treatment’’, 314 N. Eng.*J. Med. 14 (1986);

Roberts and Kjellstrand, ‘‘Choosing Death: Withdrawal from

Chronic Dialysis Without Medical Reason’’, 223 Acta Med.

Scand. 181 (1988); Imbus and Zawacki, ‘‘Autonomy for

Burned Patients When Survival is Unprecendented’’, 297 N.

Eng. J. Med. 308 (1977); Annas, ef a/., ‘‘The Right to Refuse

Treatmert: A Model Act’’, 73 Am. J. Pub. Health 918 (1983);

President’s Commission for the Study of Ethical Problems in

Medicine and Biomedical and Behavioral Research (hereinafter

‘*President’s Commission’’), Deciding to Forego Life-

Sustaining Treatment (hereinafter Deciding to Forego), 43-60

(1983). Informed consent protects more than self-determin-

ation. Its values include: (1) protection of the patient’s dignity

as a human being; (2) avoidance of fraud and duress; (3)

encouragement of professional self-scrutiny; and (4) facilitating

rational decisionmaking. Katz and Capron, Catastrophic Dis-

eases: Who Decides What?, 82-90 (1982 ed.). It is fundamental

to our way of life. President’s Commission, Making Health

Care Decisions, Vol. 1, 44-45 (1982); Pennock, Democratic

Political Theory, 239-241, 266-268 (1979).

Under those cases that define personal liberty and acknowl-

edge a fundamental right of privacy, the individual’s interest in

controlling which medical procedures will be administered to

him—regardless of other factors to be balanced in reaching a

decision to forgo treatment in a given case—is a fundamental

right protected under the liberty interest of the Fourteenth

Amendment. Jacobson v. Massachusetts, 197 U.S. 11, 26

(1905); Olmstead v. U.S., 277 U.S. 438, 478 (1928) (Brandeis,

J. dissenting); Skinner v. Oklahoma, 316 U.S. 535 (1942);

Griswold v. Connecticut, 381 U.S. 479 (1965); Eisenstadt v.

Baird, 405 U.S. 438 (1972); Roe v. Wade, 410 U.S. 113, 152-53

(1973); Cleveland v. Board of Education v. LaFleur, 414 U.S.

632, 639-40 (1974); Paul v. Davis, 424 U.S. 693, 710-713 (1976);

Whalen v. Roe, 429 U.S. 589, 598-600 (1977); Maher v. Roe,

432 U.S. 464, 471-73 (1977); Harris v. McRae, 448 U.S. 297,

312, n.18 (1980); Akron v. Akron Center for Reproductive

Health, 462 U.S. 416, 426-27 (1982). This Court recently reaf-

firmed that a ‘‘physical intrusion, penetrating beneath the skin,

infringes [a reasonable] expectation of privacy.’’ Skinner v.

Railway Labor Executives’ Association, 57 U.S. L.W. 4324,

4328 (1989); see also, Schmerber v. California, 384 U.S. 757,

772 (1966); Rochin v. California, 342 U.S. 165, 174 (1965). The

gastrostomy tube that invades Nancy Cruzan’s body, without

either her consent or that of her family but solely at the behest

of the State of Missouri, invades her constitutionally protected

interest in liberty and privacy. Gray v. Romeo, 697 F. Supp.

580, 584-86 (D.R.I. 1988); Rasmussen v. Fleming, 154 Ariz.

207, 215-16, 741 P.2d 674, 681-82 (1987); Barber v. Superior

Court, 147 Cal. App.3d 1006, 195 Cal. Rptr. 484 (Ct. App.

1983); Bartling v. Superior Court, supra, 163 Cal. App.3d at

195, 209 Cal. Rptr. at 225; Bouvia v. Superior Court, supra,

ee ee

179 Cal. App.3d at 1137-1138, 225 Cal. Rptr. at 301; McCon-

nell v. Beverly Enterprises-Connecticut, Inc., 209 Conn. 692,

553 A.2d 596 (1989); John F. Kennedy Memorial Hospital v.

Bludworth, 452 So.2d 921, 923-24 (Fla. 1984); In re L.H.R.,

253 Ga. 439, 321 S.E.2d 716 (1984); In re Quinlan, 70 N.J. 10,

355 A.2d 647 (1976).”

While amicus agrees with the courts that have concluded that

the constitutional right of privacy encompasses the right to

refuse medical treatment, one can reach the conclusion that the

right to refuse medical treatment is a fundamental right without

even discussing the right to privacy. This is because the right to

determine who will do what with one’s body is ‘‘deeply rooted

in this nation’s history and tradition’’ and is ‘‘implicit in the

concept of ordered liberty.’’

It is an established part of our constitutional jurisprudence

that the term ‘liberty’ in the Due Process Clause extends

beyond freedom from physical restraint. . . [but] the Due

Process Clause affords only those protections ‘‘so rooted

in the traditions and conscience of our people as to be

ranked as fundamental.’”’

Snyder v. Massachusetts, 291 U.S. 97, 105 (1934). Michael H.

v. Gerald D., 57 U.S.L.W. 4691, 4694 (1989).

The right to refuse treatment meets these criteria. It has been

an enduring principle of American law and medical practice

that:

[Every person] of adult years and sound mind has a right

to determine what shall be done with his body; and a sur-

geon who performs an operation without his patient’s con-

sent commits an assault for which he is liable in damages.

Schloendorff v. Society of New York Hospital, 211 N.Y. 125,

129-30, 105 N.E.2d 92, 93 (1914), and see Faden and Beau-

2». The Ninth Amendment, intended to protect against ‘‘the most dan-

gerous political heresies’, Story, Commentaries on the Constitution of

the United States, 711 (1987 ed.), also guarantees the liberties denomi-

nated under the right of privacy. Griswold, at 492 (Goldberg, J. con-

curring).

champ, A History and Theory of Informed Consent (1986);

President’s Commission, Making Health Care Decisions, Vol. |

(1982).

Even in the case most often cited for the proposition that the

state has a sufficient interest in protecting the health and safety

of its citizens to compel vaccinations, no one was actually com-

pelled to receive even a vaccination against his will (although

amicus concedes that under proper circumstances the state

could demonstrate a sufficiently compelling reason to require

vaccination). Instead, the Court upheld a Massachusetts statute

that punished those who refused smallpox vaccination, by a

fine of $5. Jacobson v. Massachusetts, 197 U.S. 11 (1905).

There is nothing in this case to indicate any public health or

safety interests the state has in compelling Nancy Cruzan’s con-

tinued treatment. Consensual treatment is not demeaning or

violative of individual dignity or respect for persons. But this

Court has consistently recognized that involuntary, invasive

medical procedures cannot be permitted absent a compelling

state interest:

When conducted with the consent of the patient, surgery

requiring general anesthesia is not necessarily demeaning

or intrusive. In such a case, the surgeon is carrying out the

patient’s own will concerning the patient’s body and the

patient’s right to privacy is therefore preserved. In this

case, however, . . . the Commonwealth proposes to take

control of respondent’s body [to remove a ‘billet that

might prove him an armed robber] to drug this citizen—

not yet convicted of a criminal offense—with narcotics

and barbiturates into a state of unconsciousness and then

to search beneath his skin for evidence of a crime. This

kind of surgery involves a virtually total divestment of

respondent’s ordinary control over surgical probing

beneath his skin. ;

Winston v. Lee, 470 U.S. 753, 764-65 (1985).

Nancy Cruzan’s case is, of course, much worse. The state has

taken permanent (rather than temporary) control of her body

and has totally divested her of ‘‘ordinary control over surgical

ak oer mn QP we wee ee

probing’’ beneath her skin. It is not the unconsciousness that

makes surgery demeaning in either case, it is its involuntary

nature.

Rather than explore the common law and constitutional right

to refuse treatment, however, the Missouri Supreme Court con-

cludes that the state’s interests a/ways outweigh those of the

incompetent citizen who can be treated without pain to sustain

life because ‘‘the state’s interest is in life; [and] that interest is

unqualified.’’ In this respect, which is at the core of the Mis-

souri opinion, it should be noted that this argument has been

consistently rejected by virtually every court that has ever heard

it. Most succinctly, the Massachusetts Supreme Judicial Court

has said:

The constitutional right to privacy, as we conceive it, is an

expression of the sanctity of individual free choice and

self-determination as fundamental constituents of life.

The value of life as so perceived is lessened not by a deci-

sion to refuse treatment, but by the failure to allow a com-

petent human being the right of choice.

Superintendent of Belchertown State School v. Saikewicz, 370

N.E.2d 417, 426 (1977).

Amicus suggests that this proposition is also self-evident. We

have historically considered life without liberty not worthy to

be lived, and have set up the state to protect the liberty of its

citizens. Thus the state can have no greater interest in an indi-

_vidual’s life than the individual herself has. The inevitable con-

clusion follows: if Nancy Cruzan were competent, she could

herself reject medical treatment needed to sustain her life.

Only two questions remain: is artificial alimentation a medi-

cal treatment?, and can Nancy Cruzan’s right to refuse treat-

ment be exercised by others, and if so, under what

circumstances? :

Il. THE RIGHT TO REFUSE LIFE-SUSTAINING TREAT-

MENT INCLUDES THE RIGHT TO FORGO ARTIFI-

CIAL ALIMENTATION

Artificial alimentation is an invasive intervention using tubes

or catheters and, in the case of a gastrostomy or jejunostomy,

requiring surgical incision and placement of the tube. The tubes

themselves are regulated as medical devices by the FDA, 21

C.F.R. 876.5980, and as used in Nancy Cruzan, fall within the

government’s functional definition of a life-supporting or life-

sustaining device, 21 C.F.R. 860.3 (e). Regardless of whether

Missouri chooses to define this device as a ‘‘procedure,’’ ‘‘med-

ical procedure’ or a ‘‘death-prolonging procedure,”’ it is un-

deniably a medical treatment. U.S. Congress, Office of

Technology Assessment, Life-Sustaining Technologies and the

Elderly, 275-329, 445 (1987) (hereinafter ‘‘O7TA Study’’); Hast-

ings Center, Guidelines on the Termination of Life-Sustaining

Treatment and the Care of the Dying, 59-62, 140 (1987) (herein-

after ‘‘Hastings Guidelines’’); President’s Commission, Decid-

ing to Forego, at 3.

Artificial alimentation devices or systems gain access to the

alimentary tract in any of the following ways: .

— by way of a nasogastric tube placed through the nose,

down the esophagus and into the stomach;

— by way of a naso-enteral tube placed through the nose,

down the esophagus, through the stomach and into

either the duodenum or the jejunum;

— by way of a gastrostomy, endoscopically or surgically

placed through the abdomen into the stomach; or

— by way of a jejunostomy, surgically placed through the

abdominal] wall into the small intestine.

OTA Study, at 280-282. Another form of alimentation is

accomplished by way of a subclavian catheter. Jd., 283-286.

Even the induction of a simple nasogastric tube is no easy

matter.

Insertion of this simple plastic tube is uncomfortable and

its retention is irritating. If awake and able to cooperate,

the patient is asked to swallow water repetitively as the

tube, which is lubricated with a tasteless jelly, is passed

through the nose and pushed through the posterior phar-

ynx and esophagus into the stomach. The tube is irritating

to the nose and causes a gag reflex when it reaches the pos-

terior pharynx, sometimes causing vomiting. The naso-

gastric tube continues to pose significant hazards while it is

in place. It may cause vomiting and aspiration of the gas-

tric contents, producing a serious aspiration pneumonia. It

may irritate the mucosal surfaces, causing bleeding, some-

times severe. Many patients need to be restrained forcibly

and their hands put into large mittens to prevent them

from removing the tube, a thought which all patients with

any degree of consciousness seem to have. These

restrained patients may develop pneumonia and serious

bedsores because of lack of activity and fixed positions.

Patients with some insight are likely to become depressed

or angry over being tied down.

Major, ‘‘The Medical Procedures for Providing Food and

Water: Indications and Effects’’, in Lynn (ed.), By No Extraor-

dinary Means (1989), at 25. Such methods of artificial treat-

ment are very different from a spoon, straw, or other ways in

which people normally feed themselves. McConnell v. Beverly

Enterprises-Connecticut, Inc., supra, 209 Conn. at 705, 553

A.2d at 603.

The substances that provide artificial nutrition bear scant

resemblance to what most people call ‘‘food’’ and are listed in

the Physicians’ Desk Reference (PDR), a compilation of phar-

maceutical references. One patient’s experience illustrates the

undeniably medical nature of such feeding systems.

Originally [Nancy Jobes] was fed and hydrated intraven-

ously, then through a nasogastric tube, then a gastrostomy

tube. In June, 1985, complication: with the gastrostomy

tube necessitated an even more direct approach. Since

then, Mrs. Jobes has been fed through a j-tube inserted—

through a hole cut into her abdmoninal cavity—into the

jejunum of her intestine. Water and a synthetic, pre-

digested formula of various amino acids are pumped

through the j-tube continuously. She has been removed to

Morristown Memorial Hospital at least three times

vecause of complications with the j-tube.

In re Jobes, 108 N.J. 394, 402, 529 A.2d 434, 438 (1987). As

this description makes clear, artificial alimentation is not the

same as eating.

Administering mechanical nutrition and hydration is no

picnic. It is not—like feeding and offering drink o:dinarily

are—close, intuitive, intimate nurturing, emotionally

affecting for caregiver and recipient alike. It is not done by

relatives or !ong-time friends, or intimates. Moreover, for

resistant patients who must be restrained, it really can be

indistinguishable from torture.

Landsman, ‘‘Terminating Food and Water: Emerging Legal

Rules’’, in Lynn (ed.), supra, at 136. See also, In re Requena,

213 N.J. Super. 475, 485-86, 517 A.2d 886, 892 (Ch. Div.)

aff’d, 213 N.J. Super. 443, 517 A.2d 869 (App. Div. 1986).

Thus, artificial alimentation is demonstrably a form of medical

intervention that patients may elect to forgo. .

The vast majority of courts have decided tha: there is no

meaningful iegal distinction between artificially provided nutri-

tion and hydration and other life-sustaining interventions, such

as respirators for breathing or dialysis for elimination, and have

concluded that the right to refuse treatment necessarily includes

the right to refuse artificial alimentation.

[A]rtificial feedings such as nasogastric tubes, gastrosto-

mies, and intravenous infusions are significantly different

from bottle-feeding or spoonfeeding—they are medical

procedures with inherent risks and possible side effects,

instituted by skilfed health-care providers to compensate

for impaired physical functioning. Analytically, artificial

feeding by mears of a nasogastric tube or intravenous

infusion can be seen as equivalent to artificial breathing by

means of a respirator. Both prolong life through mechani-

cal means when the body is no longer able to perform a

vital bodily function on its own.

In re Conroy, 98 N.J. 321, 372-374, 486 A.2d 1209, 1235-37

(1985). See also, Brophy v. New England Sinai Hospital, Inc.,

398 Mass. 417 at 435-39, 497 N.E.2d 626 at 636-38; Jn re Peter,

108 N.J. 365, 380-382, 529 A.2d at 419; Jn re Jobes, supra, 108

N.J. at 413, n. 9, 529 A.2d at 444, n. 9; In re Gardner, 534 A.2d

947, 954-55 (Me. 1987); Jn re Drabick, 200 Cal. App. 3d 185,

195, n.9, 245 Cai. Rptr. 840, 846, n. 9 (1988); Delio v. West-

chester County Medical Center, 129 A.D.2d 1, 516 N.Y.S.2d

677 (1987); Gray v. Romeo, supra, 597 F. Supp. at 587;

McConnell v. Beverly Enterprises-Connecticut, Inc., supra, 209

Conn. at 705, 553 A.2d at 603; Corbett v. D’Alessandro 487

So.2d 368, 371 (Fla. Dist. Ct. App. 1986), ev. den. 492 So.2d

1331 (Fla. 1986); Jn re Browning, 543 So.2d 258 (Fla. Dist. Ct.

App. 1989). -

Implicit in the Missouri court’s opinion that the law does not

permit any patient to die by starvation and dehydration is the

belief that patients who forgo such treatment inevitably die ago-

nizing deaths. Given that one of the premises on which the

court rests its decision to continue treatment is that Nancy Cru-

zan is incapable of feeling pain,’ it is unclear how she could be

pained by the withdrawal of treatment whose administration

she is incapable of sensing.

If decisions about withdrawing treatment were to be prem-

ised on such loose considerations as a desire to prohibit a cer-

tain mode of dying, one might well say that patients could never

refuse treatment that may result in death by suffocation (with-

drawal of respirators), heart attack (cardiopulmonary resuscita-

tion), bacterial infections (antibiotics), a rise in toxins (dialysis),

or gangrer.e (amputation). Nothing in the Missouri Supreme

3. Whether unauthorized contact results in pain is an important, but

not a controlling issue. Unconscious, sleeping, anesthetized and even

dead persons have an interest in preserving their dignity regardless of

the state’s ability or failure to inflict pain. The absence of pain makes

the contact neither less offensive nor more lawful.

Court’s opinion gives parents or guardians the authority to

refuse any medical treatment, no matter that it provides no ben-

efit and may even cause suffering. Natural death legislation

could become death regulation, and an iatrogenic death would

be substituted for a natural, progressive failure of body sys-

tems. Under Missouri’s reasoning, patients would always die

intubated, medicated, catheterized and amputated for the sake

of preserving life. No law can make death other than what it is:

for some peaceful, for others not. President’s Commission,

Deciding to Forego, at 24. By divesting patients of any choice in

the matter, however, the law can make life not worth living

under certain circumstances. The court’s reasoning would com-

pel treatment in pursuit of an unattainable goal—perpetual

life—at the sacrifice of other, equally essential interests. If the

court’s concern is the legitimate one that patients not be aban-

doned by the medical system, that concern is met by permitting

the Cruzan family to have the tube-removed and transferring

their daughter to the hospice section of the hospital, the very

relief they originally sought.

In short, forgoing treatment does not mean that all care is

abandoned. It means forgoing only a particular unwanted treat-

ment. Hospice care provides treatment directed toward the

reduction or abatement of the physical and psychosocial symp-

toms of a patient for whom treatment to cure or control a dis-

ease is no longer appropriate or effective. 42 C.F.R., sections

418.1 et seq.; Joint Commission for the Accreditation of Health

Care Organizations, Hospice Care Standards Manual (1986).

Such comfort care remains available when any life-sustaining

treatment is forgone.

When a life-sustaining treatment is forgone, and whenever

a patient is dying, the treatment team has an obligation to

provide supportive care, to make the patient as comfort-

able as possible and to assure that adequate symptom con-

trol and support will be provided. * * * Such care may

include a wide variety of measures to provide symptomatic

relief, sedation and pain control, skin care, and turning

and positioning.

Hastings Guidelines, supra, at 30.

Thus, the use of water and dextrose in place of liquid nutri-

tion, and of ice chips to maintain moisture, are examples of the

readily available means of comfort for the patient who wishes

not to be artificially fed. Dresser and Boisaubin, ‘‘Ethics, Law

and Nutritional Support’’, 145 Arch. Int. Med. 122, 123 (1985).

See also, Ruark, et al., ‘‘Initiating and Withdrawing Life Sup-

port’’, 318 N. Eng. J. Med. 25, 30 (1988); Rulkin and

Lukashok, ‘‘Rx for Dying: The Case for Hospice Care’’, 318

N. Eng. J. Med. 376 (1988); ‘‘Supportive Care for Dying

Patients: An Introduction for Health Care Professionals’’, in

President’s Commission, Deciding to Forego, at 277-297. Stein-

brook and Lo, ‘‘Artificial Feeding: Solid Ground Not a Slip-

pery Slope’’, 318 N. Eng. J. Med. 286, 288 (1988); Lynn,

**Legal and Ethical Issues in Palliative Health Care’’, 12 Semi-

nars in Oncology 476 (1985); Lynn and Childress, ‘‘Must

Patients Always be Given Food and Water?’’, in Lynn (ed.),

supra, at 52-53 (1989); Schmitz and O’Brien, ‘‘Observations on

Nutrition and Hydration in Dying Cancer Patients’’, in Lynn

(ed.), supra, at 29-38. There are at least twenty-seven hospices

available in Missouri, whose expertise is the provision of such

care. National Hospice Association, The 1988 Guide to the

Nation’s Hospices, 96-98 (1988). The specter of a cruel death by

**starvation and dehydration’’ raised by Missouri is, therefore,

a myth, for as the record in this case itself shows, withdrawal of

artificial alimentation does not cause the patient to suffer an

agonizing end.

Ill. BECAUSE THESE CONSTITUTIONAL RIGHTS ARE

IMPORTANT TO INCOMPETENT AS WELL AS

COMPETENT PATIENTS, SURROGATE MEDICAL

DECISIONMAKING IS NECESSARY TO INSURE

THAT THEY SURVIVE A DETERMINATION OF

INCOMPETENCY

Implicit in the concept that the right to refuse treatment is a

patient’s personal right is the idea that patients do not lose their

rights when they lose consciousness. The rights of competent

and of incompetent patients are parallel. If the state’s interest in

preserving an incompetent patient’s life depends primarily on

the technological ability to sustain existence—what Missouri

calls its ‘‘unqualified interest in preserving life’’—there is no

evident reason why such logic does not apply to competent

patients, even to the point of restraining them in order to com-

pel treatment. Thus, the generally accepted view that rights con-

cerning treatment decisions do not lapse when a patient

becomes incompetent is as essential to preserving the rights of

competent patients as of incompetent patients.

To say that a patient’s medical decisionmaking rights—

including the option to forgo treatment—survive incompetency

requires elaboration, since the capacity for the contemporane-

ous exercise of self-determination clearly does not survive. The

right of privacy is often said to include three interrelated inter-

ests: (1) maintaining one’s physical integrity; (2) controlling dis-

closure of personal matters; and (3) independence in making

certain types of important decisions. Akron, supra, at 426-27;

Maher, supra, at 473; Whalen, supra, at 598-600. These inter-

ests correspond to the values that informed consent encourages

and protects. Faden and Beauchamp, supra, at 39-43; section I,

supra. If these rights lapsed with consciousness, incompetent

patients would have no interest in prohibiting the violation of

their physical integrity, limiting the disclosure of private infor-

mation, or in the nature or quality of treatment decisions or of

the treatment itself. In short, they could be treated as things,

not persons. These interests are, therefore, valuable to incom-

petent as well as competent patients, and it is hard to imagine

how respect for individuals couid exist if these values were dis-

carded. The difficulty here is not whether these interests survive

incompetency but how best to safeguard them during incompe-

tency.*

4 Analogies to the rights governing speech, voting or marriage, see,

Weber, “‘Substituted Judgment Doctrine: A Critical Analysis’, 1

Issues in Law and Medicine, 131, 139-40 (1985), are specious. Nobody

is obligated to speak or marry; elections are held, but people are not

It makes no more sense to say Nancy Cruzan must be treated

because she cannot now say no, than to say that she should

never have been treated because she never said yes. Taken to

their logical extremes, neither view reaches a sensible result.

Because society has an interest in ensuring that incompetent

patients receive the treatment they want and need, and in

respecting the dignity of all persons, an intermediate approach

is essential to maintaining this balance. Surrogate decisionmak-

ing furthers the law’s respect for the rights of persons with

regard to medical treatment decisions, and strives to ensure that

incompetent patients may enjoy the fullest possible range of

rights available to competent patients. Rasmussen, supra, 154

Ariz. at 219, 741 P.2d at 686. Unless the rights of liberty, pri-

vacy and informed consent are deemed inapplicable to incom-

petent patients, surrogate decisionmaking must be permitted. It

is not a fraud, but a necessary legal mechanism that remains

truthful to the values of life and liberty. Fuller, Legal Fictions,

49-53 (1967).

This Court has repeatedly affirmed that freedom of personal

choice in matters pertaining to the f mily is one of the liberties

protected under the Fourteenth Amendment’s Due Process

Clause. Loving v. Virginia, 388 U.S. 1, 12 (1967); Pierce v.

Society of Sisters, 268 U.S. 510 (1925); Meyer v. Nebraska, 262

U.S. 390 (1923); Prince v. Massachusetts, 321 U.S. 158, 166

(1944); Skinner v. Oklahoma, supra, 316 U.S. at 541; H.L. v.

Matheson, 450 U.S. 398, 410 (1981); Bowen v. American Hos-

pital Association, 476 U.S. 610, 627 (1986); Parhem v. J.R.,

required to vote. For competent as well as incompetent patients, how-

ever, treatment decisons must be made. Indeed, if the analogy to other

rights were accurate, its inescapable conclusion would be that absent

the consent of the patient herself, treatment could never be rendered.

Such reasoning would bring us to the absolute position that an incom-

petent patient’s liberty or privacy interest may never be violated, since

neither a surrogate, a physician nor the state could abridge that interest

any more than they could compel a citizen to vote, speak or marry.

Because no one would have the 'egal power to override Nancy Cru-

zan’s interest in protecting her physical integrity, the current treatment

would have to be halted.

442 U.S. 584, 602-04 (1979); Michael H. v. Gerald L , 57

U.S.L.W. 4691, 4694 (1989). The law customarily defers tc the

family or, in its absence, to a duly appointed guardian, to act as

the patient’s surrogate in the event of incapacity. Health care

providers assume this is so.

If the patient/resident has been adjudicated incompetent

in accordance with law, is found by his or her physician to

be medically incapable of understanding or exhibits a com-

munication barrier, these responsibilities are assured for

the patient/resident by his or her guardian, next of kin, or

legally authorized person.

Joint Commission for the Accreditation of Health Care Organi-

zations, Long Term Care Standards Manual, 56 (1988). The

family is customarily presumed to be in the best position to

make treatment decisions on behalf of an incompetent child,

sibling or spouse, including the withdrawal of life-sustaining

treatment. Areen, ‘‘The Legal Status of Consent Obtained

from Families of Adult Patients to Withhold or Withdraw

Treatment’’, 258 J.A.M.A. 229 (1987); In re L.H.R., supra,

253 Ga. at 446, 321 S.E.2d at 722; In re Barry, 445 So.2d (Fla.

Dist. Ct. App. 1984); Jn re Rosebush, Mich. Cir. Ct., Oakland

Co., No. 88-349180AZ (July 29, 1988); Newman, ‘‘Treatment

Refusals for the Critically and Terminally Ill: Proposed Rules

Rts. Ann. 35, 44-55 (1985); Rhoden, ‘‘Litigating Life and

Death’’, 102 Harv. L. Rev. 375, 437-46 (1988).

The Missouri Supreme Court, however, rejected as a matter

of law the proposition that the right to refuse treatment may

ever be exercised by any surrogate, family member or guardian

in the event of incompetency, by declaring emphatically that the

court cases holding otherwise simply employed a ‘‘rationale

. . . born to reach the end sought.”’

Extensive explanations of the values underlying surrogate

decisionmaking are readily available in the cases the Missouri

Supreme Court relegated to a footnote. Generally, surrogate

decision-making uses two standards in making treatment deci-

sions for the incapacitated patient: substituted judgment and

best interests. Originating in the law requiring guardianships,

these mechanisms protect self-determination by attempting to

arrive at the same choice the patient would make if capable, and

promote patient welfare by seeking to place reasonable limits

on the use of unduly intrusive, burdensome or futile treatment.

Ideally, courts seek clear evidence of the patient’s wishes, which

the trial court in fact found in this case. Where the patient has

not articulated her preference, or where the testimony regarding

oral statements is consistent, but not sufficiently probative, the

court implements ‘substituted judgment’ by taking into account

all that is known about the patient’s beliefs and values, together

with whatever is known about the treatment in question, to

arrive at the decision the court believes the patient would have

made. As was done below, the court seeks the guidance of fam-

ily and friends, those most likely to know and be concerned for

the patient. When the evidence under either of these standards

is unavailable, the ‘best interests’ test weighs the relative bene-

fits and burdens of treatment in an effort to balance the interest

in preserving life with continued respect for the person who is

the patient.’ President’s Commission, Making Health Care

Decisions, Vol. 1, 177-88 (1982); Deciding to Forego, at 121-96;

OTA Study, at 118-19; Hastings Guidelines, at 28 (1987); Ras-

mussen, supra, 154 Ariz. at 221-223, 741 P.2d at 688-89; Dra-

bick, supra, 200 Cal. App.3d at 193-212, 245 Cal. Rptr. at

844-856; John F. Kennedy Memorial Hospital v. Bludworth,

supra, 452 So.2d at 926; In re Gardner, supra, 534 A.2d at 953;

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

at 433-38, 497 N.E.2d at 631-34; In re Conroy, supra, 98 N.J. at

356-68, 486 A.2d at 1227-33; In re Jobes, supra, 108 N.J. at

413-424, 529 A.2d at 443-447; In re Peter, supra, 108 N.J. at

374-377, 529 A.2d at 423- 430. All of the cited authorities dem-

onstrate that the Missouri Supreme Court’s casual dismissal of

this doctrine is destructive of individual and family values and

rejects the basic principles of informed consent.

S Because the trial court found clear and convincing evidence of

Nancy Cruzan’s wishes, it did not have to consider the evidence under

these tests. Because the Missouri Supreme Court’s opinion precludes

surrogate decisionmaking altogether, it is not known how it would

implement these standards.

IV. THE REASONING UNDERLYING THE DECISION

BELOW LEADS TO RESULTS CONTRARY TO THE

INTERESTS THE CONSTITUTION PROTECTS AND

OUGHT TO ENCOURAGE

Sweeping claims about the need to preserve life ‘‘have an

emotional appeal that facilely avoids the constitutionally

required scrutiny of the state’s authority to act and search for

less restrictive alternatives.” Public Health Trust of Dade

County v. Wons, 541 So.2d 96, 99 (Fla. 1989) (Ehrlich, C.J.

concurring). Although a laudable goal, the preservation of life

is not an unswerving mandate that absolutely extinguishes all

other values. The decision below undermines the values that

informed consent protects.

1. If Missouri’s Definition of Who is Terminally Ill or

Imminently Dying is Permitted to Condition Patients’

Options, the Right to Refuse Treatment Becomes

Meaningless.

Essential to the court’s conclusion that Missouri’s Death-

Prolonging Procedures Act ‘“‘clearly’’ states a policy favoring

life® was its finding that Nancy Cruzan’s case does not satisfy

the statutory definition of terminal illness. Yet the only reason

Nancy Cruzan is not considered ‘‘terminally ill’? is that Mis-

souri’s legislature has defined artificial alimentation as a ‘*pro-

cedure,”’ not a ‘‘medical procedure’’. Mo. Stat. Ann. sections

459.010 (3) and (4). No court other than Missouri’s has condi-

tioned a patient’s right to forgo treatment on satisfying the arti-

ficial definitions contained in a natural death act, or embraced

the concept that treatment rights may be conditioned by verbal

manipulation. Barber, supra, 195 Cal. Rptr. at 49, 147 Cal.

App.3d at 1016; Bartling, supra, 209 Cal. Rptr. at 223, 163 Cal.

App.3d at 193; Corbett v. D’Alessandro, supra, 487 So.2d at

370; In re Gardner, supra, 534 A.2d at 952, n.3; In re Drabick,

supra, 245 Cal. Rptr. at 858-60, 200n Cal. App.3d at 214-16; Jn

6 In fact, it is not that clear. Johnson, ‘‘The Death-Prolonging Proce-

dures Act and Refusal of Treatment in Missouri’, 30 St. Louis U. L.

J. 805, 824-29 (1986).

re Browning, supra, 543 So.2d at 264-270. Similarly, the logic

contained in the court’s observation that Nancy’s death is

‘“‘imminent’’ only if this procedure is halted, implying as it does

that the state’s interest in preserving life depends on medicine’s

ability to keep a patient alive, renders nugatory any meaningful

right to refuse treatment.

As with much of the terminology employed in this area,

words such as ‘terminal’ and ‘imminently dying’ convey no def-

inite meaning and lend little precision to clinical decisionmak-

ing. Beauchamp and Childress, Principles of Biomedical

Ethics, 129 (1983). Contrary to popular belief, a terminal illness

is not always identifiable as such, and most patients who are

dying have not been declared terminally ill. OTA Study, at 7;

United States v. Rutherford, 442 U.S. 544, 556 (1979). The ter-

minology, therefore, must be used cautiously.’

[FJurther definitional requirements, such as ‘‘immi-

nently’’, do little to clarify the situation. Therefore, words

like ‘‘dying’’ are used in this Report in their colloquial

sense and with a caution against regarding them as a

source of precision that is not theirs to bestow.

President’s Commission, Deciding to Forego, at 26 (emphasis

added).

. A functional definition of what constitutes a terminal condi-

tion, in order to be medically precise and respect a patient’s

rights, should be based on the likely prognosis in the absence of

treatment, and discern whether the treatment in question has

curative or restorative potential, or merely prolongs the predict-

ably fatal progression facing the patient. OTA Study, at 447;

JCAHO, Hospice Care Standards Manual, 74, 77 (1986).

Similarly, a technologically dependent definition of an immi-

nent death or a terminal illness replaces a patient’s right to

refuse treatment with the ‘‘right’’ to refuse useless care, that is,

7 Indeed, the Missouri Supreme Court inconsistently applied the word

“‘terminal’’ when discussing three different patients—Karen Quinlan,

Brother Fox and Paul Brophy—each of whom was diagnosed as being

permanently unconscious, demonstrating the difficulties inherent in

tying these matters to semantics.

care that no responsible physician would offer. Thus, the right

to refuse treatment evaporates.

‘‘Imminent’”’ is never defined in law, but if death is immi-

nent it seems that most of the potential advantages that

might be gained by forgoing life-sustaining treatment

would have been lost.

Veatch, Death, Dying and the Biological Revolution: Our Last

Quest for Responsibility, 159-60 (1989). As one court has ruled,

limiting the right to refuse life-sustaining treatment to those

instances where death is imminent

destroys the intent of the statute. There is no need for

intervention by removing life support systems for those for

whom death is only hours away. * * * It is precisely peo-

ple like Harriet Hazelton, who lie between life and death,

enjoying nothing of the sweetness of life, while her body

slowly gives up its remaining functions. . . whom the leg-

islature seeks to protect from the indignity of the artificial

prolongation of life.

Hazelton v. Powhatan Nursing Home, Va. Cir. Ct. Fairfax

County, No. 98287, August 29, 1986 (slip op. at 6), appeal

den.; record no. 860814 (Va. Sept. 2, 1986)

If the reasoning employed below goes unchecked, individual

liberties of competent and incompetent patients will be condi-

tioned on semantics. A state could enact a statute permitting

patients to refuse any medical procedure except a procedure

that provides air (a respirator), sustains a heartbeat (cardiopul-

monary resuscitation or a pacemaker), or rids the body of its

wastes (renal dialysis); and then only when death was ‘‘immi-

nent.’’ This would abnegate society’s responsibility and the

patient’s right to exercise control over technology’s use, and

would enshroud the healing relationship in an atmosphere of

‘therapeutic relentlessness’’ devoid of the humane purposes

medicine is intended to serve and the human values governing

its administration.

[T]he power technology gives us makes it necessary to

ensure that we apply it humanely and efficiently. * * *

[Ml]isuse may not only raise the cost of health care but can

harm the patient. * * * Technology poses [a] challenge

even to the practitioner who masters it technically. It not

only offers the means to improve dramatically the

patient’s quality of life, but also allows us to sustain life

under conditions of great suffering.

Reiser and Anbar, The Machine at the Bedside, xvii (1984).

2. If Guardians Are Unable to Have Artificial Alimenta-

tion Withdrawn, Some Patients Who Might Have Bene-

fitted from Artificial Alimentation May Not Receive It.

A decision to start or attempt any treatment, including a life-

sustaining treatment, should not lock the patient into a situa-

tion as irreversible as her illness. Competent patients are

permitted to begin life-sustaining treatments such as respirators

or dialysis machines on a trial basis, and then gauge the efficacy

and desirability of continuing with them. If guardians and phy-

sicians are unable to reverse decisions to use artificial alimenta-

tion they may become unwilling ever to begin treatment, out of

the fear that if it proves undesirable, they will not be able to

have it withdrawn. Jn re Conroy, 98 N.J. 321, 370, 486 A.2d

1209, 1234 (1985); OTA Study, 264-65 (1987); President’s Com-

mission, Deciding to Forego, 75.

If starting treatment is optional, stopping it must also be; the

alternative view leads to perverse results.

Accepting the distinction between withholding and with-

drawing as morally significant also has a very unfortunate

complication: caregivers may become unduly reluctant to

begin some treatments precisely because they fear that they

will be locked into continuing treatments that are no

longer of value to the patient.

Lynn and Childress, ‘‘Must Patients Always be Given Food and

Water?’’, supra, at 56.

Time-limited trials are often the best method of evaluating

the desirability of any treatment. Lo and Jonsen, ‘‘Clinical

Decisions to Limit Treatment’’, 93 Ann. Int. Med. 764, 764-65

(1980).

[T]he responsible health professiona) should present to the

patient or surrogate the option of starting or continuing a

particular life-sustaining treatment on a trial basis, with

reevaluation after a specific time. Having a trial period

may make it easier to evaluate a life-sustaining ti eatment if

the effectiveness, benefits or burdens are difficult to assess

in advance. It is. . . preferable to try a treatment and

withdraw it if it fails, than not to try at all. A trial period

may reduce the patient’s fears of losing control of a treat-

ment and ‘“‘being stuck on machines’’. It may also reduce

the emotional distress if a decision is later made to forgo

the treatment.

Hastings Guidelines, at 30. In order to make certain that

patients receive treatment, patients must be permitted to have

treatment withdrawn. The Cruzans permitted this treatment in

earnest hope that it would enable Nancy to recover; that choice

should not bar the decision they have now made, based on the

knowledge that she never will.

3. The Balance of Interests Struck by the Missouri

Supreme Court Will Cause Treatment to be Rendered in

Situations that Affront an Individual’s Personal Dig-

nity.

Nancy Cruzan did not lose her human dignity when she lost

consciousness. That interest is worthy of the greatest protection

available under the law, for the incompetent as much as the

competent patient. The decision below is indifferent to what

may have to be done in order to preserve life, and ignores the

fact that modern medicine is a mixed blessing.

In its commitment to preserve life, medical care ironically

has come to symbolize a prototypically modern form of

torture, combining benevolence, indifference and techni-

cal wizardry.

Starr, The Social Transformation of American Medicine, 390

(1987). Taken to its absolute extremes, an unqualified commit-

ment to perpetuate life can allow treatment to become abuse. In

order for treatment to proceed, some patients will be physically

restrained so as to prevent them from removing whatever treat-

ment is being administered. Strump and Evans, ‘‘Physical

Restraint of the Hospitalized Elderly: Perceptions of Patients

and Nurses’’, 37 Nursing Research 132 (1988).

Slavish insistence on providing such treatment can lead to

obnoxious results, as was demonstrated in the case of lona

Bayer. Resuscitated after a heart attack obstructed the flow of

oxygen to her brain for 25 minutes, she was left with permanent

brain damage and no reasonable hope of recovery. Her family,

knowing that she would not wish to be artificially sustained

under such circumstances, obtained a court order to halt the

artificial feeding then being provided through a naso-gastric

tube.

After the tube was removed, Mrs. Bayer’s physician ordered

a feeding regimen of 20 ounces of liquid nourishment four

times a day. This was deposited inside one of her cheeks and

was either ‘‘swallowed,’’ because of her residual involuntary

gag reflex, or ran down her face. A tracheostomy cuff, inflated

for one hour, prevented any ‘‘swallowed’’ food from entering

her lungs. When the family returned to court to compel compli-

ance with its previous order, the doctor argued that this manner

of administering nourishment did not constitute artificial feed-

ing. The court disagreed.

{T]he method of feeding amounts to a ‘‘pouring’’ of nutri-

ents into the respondent in a manner not significantly dif-

ferent than by using an artificial device such as a

naso-gastric tube.

In re Bayer, No. 4131 (N.D. Burleigh Co., 12/11/87) slip op. at

8. The feeding was stopped.

Finally, a blanket prohibition against ever forgoing artificial

nutrition and hydration will cause physicians to administer this

treatment to some patients even in those instances where it

would be futile, of no possible benefit or disproportionately

burdensome.

Sometimes even providing ‘‘food and water’’ to a patient

becomes a monumental task. Consider a patient with a

severe clotting deficiency and a nearly total body burn.

Gaining access to the central veins is likely to cause hemor-

rhage or infection, naso-gastric tube placement may be

quite painful, and there may be no skin to which to suture

the stomach for a gastrostomy tube. * * * The ineffective

efforts to provide nutrition and hydration may directly

cause suffering that offers no counter-balancing benefit

for the patient. * * * To hold that a patient must be sub-

jected to this predictably futile sort of intervention just

because protein balance is negative or the blood serum is

concentrated is to lose sight of the moral warrant for medi-

cal care and to reduce the patient to an array of medical

variables.

Lynn and Childress, ‘‘Must Patients Always Be Given Food

and Water?’’, in Lynn (ed.), supra, at 51. As one of Nancy’s

physicians testified regarding the hydration care of cancer

patients,

[I]f we don’t withdraw it, the edema [i.e. abnormally large

amounts of fluid in the intercellular tissue spaces of the

body] will cause the legs to swell to the point where they

start leaking fluid through the skin and they start losing it

faster than you can replace it. Tr. 335-21 to 25.

As some clinicians have observed, ‘‘caring may be better

expressed by providing attention and affection than by forcing

calories."” Lo and Dornbrand, ‘‘Guiding the Hand That

Feeds’’, 311 N. Eng. J. Med. 402, 404 (1984). Missouri, how-

ever, sets no limits on what has to be done to satisfy its

‘*unqualified’’ interest in preserving life, or on the indignities

that must be suffered in order to stave off death.

4. State Decisionmaking on Behalf of Previously Compe-

tent Patients Disenfranchises the Family and Guardians

and Will Substitute State-Determination for Self-

Determination by Those Who Know the Patient Best.

If surrogate decisionmaking is barred, the goal of individual-

ized treatment decisions will be wholly divested of the values or

best interests of the individual in question. Such considerations

include:

(1) the intention of the patient under existing circum-

stances, to the extent ascertainable from past expressions;

(2) any moral, ethical, religious or other deeply held belief

that would bear on the patient’s probable inclinations; (3)

the medical condition of the patient, including the level of

mental and physical functioning; (4) the nature of the rec-

ommended treatment, including its benefits, risks, inva-

siveness, painfulness and side effects; (5) the prognosis

with and without medical assistance, regarding expec-

tancy, suffering and the possibility of recovery; (6) the sen-

timents of the family, or intimate friends; and (7) the

professional judgment of the physicians involved.

See, In re Westchester County Medical Center, 72 N.Y.2d 517,

537-38, 531 N.E.2d 607, 617-18 (1988) (Hancock, J. concur-

ring); id., 72 N.Y.2d at 551-552, 531 N.E.2d at 626 (Simon, J.

Dissenting). The very values important to the patient when con-

scious would lapse with her into unconsciousness; all treatment

would be presumed to be in the patient’s best interests, a pre-

sumption cast into doubt by the preceding section. Family

members and guardians whose consent was sought would have

no option but to consent, reducing their role to little more than

a mechanistic rubber stamp for the wishes of the state. Jn re

Drabick, supra, 200 Cal. App.3d at 201, 245 Cal. Rptr. at 849-

850. Not only the dying, but even the dead might suffer. Stra-

chan v. John F. Kennedy Memorial Hospital, 109 N.J. 523, 538

A.2d 346 (1988).

Some, but clearly not all persons believe that the prolonga-

tion of biological life is an absolute obligation. Sentiments on

this subject are profound and diverse.

In few areas of health care are people’s evaluations of their

experiences so varied and uniquely personal as in their

assessment of the processes associated with dying. For

some, every moment of life is of inestimable value; for

others, life without some desired level of mental or physi-

cal ability is worthless and burdensome. A moderate

degree of suffering may be an important means of per-

sonal growth and religious experience to one person, but

only frightening or despicable to another.

Deciding to Forego at 276. A monolithic view that life is to be

perpetuated regardless of a patient’s desires and values is incon-

sistent with the pluralism encouraged under the Bill of Rights.

It permits persons to be treated as things, by making the law

indifferent to the consequences that result from a desire to pre-

serve life by whatever means necessary. OTA Study, at 446;

Callahan, Setting Limits, 178-79 (1987); Freed, ‘‘Quality of

Life: The Physician’s Dilemma’’, 65 Arch. Phys. Med. Rehab.

109 (1984); Keyserlingk, Sanctity of Life or Quality of Life

(Law Reform Commission of Canada, 1979).

By dismissing individual, family and medical values, Mis-

souri substitutes the notion of state determination for self-

determination. Ironically, the very standards it rejected affirm

the presumption in favor of life that the court strives to pre-

serve, and protect patients who, unlike Nancy Cruzan, are at

risk of having treatment stopped improperly. President’s Com-

mission, Deciding to Forego at 95 and at 184-85; Hastings

Guidelines, at iv. For the prevailing standard—when in doubt,

treat—it substituted a wholly new one: treat even when there is

no doubt that treatment is not wanted, would not benefit the

patient or would harm the patient.

Such a view replaces the patient’s judgment of what is best

with the state’s, turns the notion of consent on its head and

undermines the fundamental values informed consent pro-

motes. It requires restraining the family, the patient and the

physician from controlling or questioning the techniques

employed in the quest for perpetual life. To disregard the values

of self-determination and patient welfare as the Missouri

Supreme Court has done divests life of its fullest meaning, and

preserves nothing of the values essential to a society that

respects both life and liberty.

CONCLUSION

For these reasons, amicus respectfully urges reversal of the

decision rendered by the Supreme Court of the State of Mis-

souri.

Respectfully submitted,

*HENRY PUTZEL, III

GILES R. SCOFIELD, III

Suite 1600

530 Fifth Avenue

New York, New York 10036-5101

(212) 382-0066

*Counsel of Record

GEORGE J. ANNAS

80 East Concord Street

Boston, MA 02118

(617) 638-4626

This is a copy of a public record, reproduced as it was published. It is not legal advice, and it may not be the version a court would rely on. Check the official source before you cite it.