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

_ —

LED

. 88-150:

OCT 16 499

IN THE

JOSEPH F. SPANIOL, up.

Supreme Court of the United States™ a

October Term 1989

Nancy BETH CRUZAN, et al.,

Petitioners,

V.

DIRECTOR OF MissouRI DEPARTMENT OF HEALTH, et al.,

Respondents,

Vv. e

THap C. McCAnseE, Guardian ad litem

Respondent.

On Writ Of Certiorari To The Missouri Supreme Court

BRIEF AMICI CURIAE OF THE ASSOCIATION FOR

RETARDED CITIZENS OF THE UNITED STATES, THE

ASSOCIATION FOR PERSONS WITH SEVERE

HANDICAPS, THE ETHICS AND ADVOCACY TASK FORCE

OF THE NURSING HOME ACTION GROUP, AND THE

MEDICAL ISSUES TASK FORCE OF THE UNITED

HANDICAPPED FEDERATION IN SUPPORT OF

RESPONDENTS DIRECTOR OF MISSOURI DEPT. OF

HEALTH, ET. AL.

Stanley S. Herr James Bopp, Jr.

510 W. Baltimore Street Thomas J. Marzen*

Baltimore, Maryland Mary M. Nimz

(301) 328-3295 Daniel Avila

Counsel for the Association Teresa Kealy

for Retarded Citizens of the The National Legal Center for the

United States and The Medically Dependent & Disabled, Inc.

Association for Persons 54 Monument Circle, Suite 825

With Severe Handicaps Indianapolis, Indiana 46204

(317) 632-6245

Counsel for the Ethics and

Advocacy Task Force of the Nursing

Home Action Group and Medical Issues

Tusk Force of the United Handicapped

Federation

*Counsel of Record

Graphics Ltd., Indianapolis, IN 46202 | yi

QUESTION PRESENTED

Is a State required under the United States Constitution to

authorize court-appointed guardians to cause the death of their

incompetent and dependent ward by denying her food and

fluids when she is not terminally ill and assuming there is no

clear and convincing evidence of her intent?

TABLE OF CONTENTS

Page

Table of Authorities ......-----eeeeeereeerererreee iv

Interests of Amici Curiae .......----+eeeerrrrrreeee l

Summary of Argument ......----++seereerreresetees 3

Argume&nt ........ccccccccccssccscccessesssssseses 4

I. The Missouri Supreme Court Ruling Should Not Be

If.

III.

IV.

Disturbed: Reversal Would Thwart The Efforts Of

States To Protect Persons With Mental Disabilities

And Would Jeopardize The Life And Well-Being Of

Not Only Ms. Cruzan, But All Similarly Vulnerable

Person ......cccccscccccccnccccccccssocceses

The Missouri Supreme Court Ruling Is Consistent

With The United States Constitution And Long-

Standing Legal Tradition Governing The Disposi-

tion Of Mentally Incapacitated Adults ......----

The State May Properly Assert An Unqualified

Interest In The Protection Of Life Regardless Of

Degree Of Disability .....-----++++errerrteees

To Authorize Withholding Of Feeding And Hydra-

tion From Ms. Cruzan Would Necessarily Author-

ize Withholding Other Equivalent Or More Socially

Burdensome Forms Of Care From People With Sig-

nificant Mental Disabilities ......----+--+++++++>

The Missouri Supreme Court's Holding Is Consis-

tent With The United States Constitution .......

A. The Missouri Supreme Court Properly Bal-

anced Ms. Cruzan’s Right To Be Free Of Unwar-

ranted Bodily Intrusions With Her Right To

Dive ..cccccccccocsecsesssesseeeeneaeanee

il

qv

17

20

B. The Missouri Supreme Court's Holding Is Con-

sistent With The Constitutional Guarantee Of

Equal Protection ..........-0+0+eseeeeeees 22

VI. The Missouri Supreme Court Decision Is Sup-

ported By Federal And State Law And Policy ... 23

A. The Missouri Supreme Court Decision Is Sup-

ported By The Plain Language And Policy Of

§ 504 Of The Rehabilitation Act Of 1973 ..... 24

B. The Missouri Supreme Court Decision Is Sup-

ported By The Policy Of The Child Abuse

Amendments Of 1984 .......----+seeeeeee: 24

C. The Missouri Supreme Court Decision Is Sup-

ported By Numerous Laws And Policies Of Sev-

re cade cccces coccacsccoccoces 25

errs ee ee ee 30

Appendix A ......... eee ee cece e cree ee eneeereeeeees al

Appendix B .........0c cece cece cece cree eeenereees a2

Appendix C ........ceee cece reer eect eeeceeeeereees a3

ill

TABLE OF AUTHORITIES

Cases Page

Addington v. Texas, 441 U.S. 418 (1979) .........---5- 7

Brady v. United States, 397 U.S. 742 (1969) .......... 7

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

417, 497 N.E.2d 332 (1986) ......... ee eee eens 19

City of Cleburne v. Cleburne Living Center, Inc., 473 U.S.

GR oo bn ccbbebiddbedsnesécedveweus 20, 22, 23

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

Bk vice kbhccebc scwawdl eds veakawss caves 7, 15, 17

DeShaney v. Winnebago Dept. of Social Services, 109 S.

CR ED vc ks ct ccvescevcnscvseescauseacess 6

Fuentes v. Shevin, 407 U.S. 67 (1971) ... 6.6.26 -ee eee 7

Furman v. Georgia, 408 U.S. 238 (1972) ...... 6... eee 21

Grayson v. Linton, 63 Idaho 695, 125 P.2d 318 (1942) .. 11

In re Conroy, 98 N.J. 321, 486 A.2d 1209 (1985) ....... 12

In re Cordes’ Estate, 116 S.W.2d 207 (Mo. Ct. App. 1989) 11

In re Duren, 355 Mo. 1222, 200 S.W.2d 343 (1947) ..... ll

In re Estates of Vicic, 79 Ill. App. 3d 383, 398 N.E.2d 420

CD «5 cc cvccdeenVoncecieeueséncuaueeeeieusen 11

In re Hymes, 102 Mise. 2d 821, 424 N. Y.2d 608 (Sur. Ct.

BR 55556 nns shake knikeaeheaneeneneereens 11

In re Peter, 108 N.J. 365, 529 A.2d 419 (1987) ......... 8

In re Phillip B., 189 Cal. App. 3d 407, 188 Cal. Rptr. 781

iin éccetaddences OGendaeeaucnbapsadent 6, 9, 13

In re Prange, 520 N.E.2d 946 (1988), vacated 527 N.E.2d

SG CD occn dance ccvscisccevesacedseeeee 14

iv

Inre Storar, 52 N. Y.2d 363, 438 N. Y.S.2d 266, 420 N.E.2d

64, cert. denied, sub. nom. Storar v. Storar, 454 U.S.

Re a sr 14

In re Westchester County Medical Center (O’Connor), 72

N.Y.2d 517, 531 N.E.2d 607, 534 N.Y.S.2d 886

SN Gie ot bNedC0 Con cad db hdowe 04 6605000006660 8

In re Quinlan, 70 N.J. 10, 355 A.2d 647, cert. denied, 429

PE Na cavucbcedseecescaceess euedess 6, 11

Lassiter v. Department of Social Services, 452 U.S. 18

aa eee aledc rnddevucenccebtcdetesecs 6

Leach v. Akron General Medical Center, 678 Ohio Misc. 1,

GP OC POD avec ccsdccccscsvcccecess 8

Palmore v. Sidoti, 466 U.S. 429 (1984) ............... 23

Parham v. J.R., 442 U.S. 584 (1979) .............055. 6, 14

Rasmussen v. Fleming, 741 P.2d 674 (Ariz. 1987) ..... 14

Sanchez v. Fairview Developmental Center, No. CV 88-

0129 FFF (Tx) (C.D. Cal. filed Feb. 22, 1988) ..... 5

Scott v. Royston, 223 Mo. 568, 123 S.W. 454 (1909) .... 11

Snyder v. United States, 134 F. Supp. 319 (W.D.N.C.

DD scbeedeacdeecdhdcehand deuce edabadediene ll

State v. Serebin, 119 Wis. 837, 350 N.W.2d 65 (1984)... 29

State ex rel. Standefer v. England 328 S.W.2d 732 (Mo.

i ME BK nde sl cdbbheeendunsisedseews ll

Superintendent of Belchertown State School v. Saikewicz,

373 Mass. 728, 370 N.E.2d 417 (1977) ........... 11, 13

Thompson v. Oklahoma, 108 S. Ct. 2687 (1988) ....... 6

Trenton Trust v. Western Surety, 599 S.W.2d 481 (Mo.

BY CAC bVGh od uveceecdssandhndedeeernacabeens 11

‘

\

Youngberg v. Romeo, 457 U.S. 307 (1982) ..........5. 6

Other Authorities

39 Am. Jur. 2d Guardian and Ward (1968 & Supp. 1989) 11

Black's Law Dictionary (5th ed. 1979) ........--0005: 10

1 W. Blackstone, Commentaries* .........0-+0+00005 10

S. Brakel, J. Parry & B. Weiner, The Mentally Disabled

and the Law (3d ed. 1985) .......-6ee eee eens 10, 11

Burgdorf & Burgdorf, History of Unequal Treatment:

The Qualifications of Handicapped Persons as a

“Suspect Class” Under the Equal Protection Clause,

15 Santa Clara L. Rev. 855 (1975) ..........0555- 16

Byrn, Compulsory Lifesaving Treatment for the Compe-

tent Adult, 44 Fordham L. Rev. 1 (1975) ........-- 8

Correspondence from William Crochunis, Health Care

Financing Administration, U.S. Dept. Health and

Human Services, to Teresa Kealy (Aug. 29, 1989) . 5

Herr, Civil Rights, Uncivil Asylums, and the Retarded,

43 U. Cin. L. Rev. 679 (1974) ........eeeeeeeeees 16

S. Herr, Rights and Advocacy for Retarded People

SE os coo nk nko denn edeedh ous ddubes ceeerenes ss 10, 16

Hollander, Euthanasia and Mental Retardation: Sug-

gesting the Unthinkable, 27 Mental Retardation 53

SE is ccd oebnncneeeseteukenen060sedVetsueess 9

Johnson, Withholding Fluids and Nutrition; Identifying

the Populations at Risk, 2 Issues L. & Med. 189

PE. scien aeeenssotereene Cennsendantsedacne 5

2 J. Kent, Commentaries*® .........00 cee eeceeceenes 4

Martin, Update on Dementia of the Alzheimer Type, 40

Hospital & Community Psychiatry 593 (1989) ..... 4,19

vi

Munro, Epidemiology and the Extent of Mental Retarda-

tion, 9 Psychiatric Clinics of North America 591

Sc cic uvcad ann eedss kis 04s Rake dip de 0e0 400. 4

Office of Technology Assessment, Congress of The U.S.,

Life-Saving Technologies And The Elderly

ESS ie ee er P tee er re ee 4,19

Office of Technology Assessment, Congress of The U.S.,

Losing a Million Minds: Confronting the Tragedy of

Alzheimer’s Disease and Other Dementias (1987).. = 4

De Praerogativa Regis, 17 Edw. 2, cs 9, 10 (1324) ..... 10

2 J. Reeves, History of English Law (1814) ........... 10

Ritvo, Freeman, Pingree, Mason-Brothers, Jorde, Jen-

son, McMahon, Petersen, Mo & Ritvo, The UCLA-

University of Utah Epidemiologic Survey of Autism:

Prevalence, 146 Am. J. Psychiatry 194 (1989) ..... 4

2 L. Shelford, A Practical Treatise on the Law Concern-

ing Lunatics, Idiots, and Persons of Unsound Mind

Tee ee ec eeee eae eT 10

U.S. Comm’n on Civil Rights, Medical Discrimination

Against Children With Disabilities (1989) ....16, 24, 25

Wolfensberger, The Killing Thought in the Eugenic Era

and Today: A Commentary on Hollander’s Essay, 27

Mental Retardation 63 (1989) .............2.005- i)

Statutes and Regulations

FEDERAL

29 U.S.C.A. § 794 (West Supp. 1989) .............. 24

29 U.S.C.A. § 706(8)(B) (West Supp. 1989) ......... 24

42 U.S.C.A. § 5106a (West Supp. 1989) ............ 25

45 C.F.R. § 13840.15(b)(2) (1988) «2.2... 25

vii

STATE

Ala. Code §§ 22-8A-1 to -10 (1984) ........0eeeeeees 27

Ala. Code §.38-9-5 (Supp. 1989) ........0eeeee seers 28

Alaska Stat. §§ 18.12.010(c), 18.12.040(b) (1986) ..... 26

Alaska Stat. § 47.17.070(6) (Supp. 1989) ......-..++. 28

Ariz. Rev. Stat. Ann. 5 36-3201(4) (1986) ........... 26

Ark. Stat. Ann. § 5-28-1038 (1987) .. 2... 6660s cece 28

Ark. Stat. Ann. § 20-17-206(b) (Supp. 1987) ......-. 26

Cal. Civ. Code §§ 2430 to 2444 (West Supp. 1988).... 27

Cal. Health & Safety Code § 7185-7195 (West Supp.

oll. <£:6004e6ednornenwetwessburdeass 50c0oes 27

Cal. Penal Code § 11165.2 (West Supp. 1989) ........ 28

Cal. Welf. & Inst. Code §§ 15610(c)(4), (d) (West Supp.

icc. du le deseesennthsesbtde ences 28

Colo. Rev. Stat. § 14-6-101(1) (1987) ......----+++-- 28

Colo. Rev. Stat. § 15-18-103(7) (1987) .........+-++- 26

Conn. Gen. Stat. Ann. § 19a-570(1) (West Supp. 1989) 26

Del. Code Ann. tit. 16, §§ 2501-2509 (1983) ........- 27

Del. Code Ann. tit. 31, § 3902(4) (1985) ........-. . 28

D.C. Code Ann. §§ 6-2401 to -2430 (1989) .......... 27

Fla. Stat. Ann. § 39.01(37) (West 1988) ...........- 28

Fla. Stat. Ann. § 400.141(5) (West 1986) .........-- 28

Fla. Stat. Ann. § 415.503(8)(f) (West Supp. 1989) .... 28

Fla. Stat. Ann. § 765.03(3) (West 1986) .......-..+- 26

Ga. Code Ann. § 19-14-2(4) (Harrison 1987) .......-. 28

vill

Ga. Code Ann. § 31-32-2(5)(A) (1985 & Supp. 1989) .. 26

Hav.. Rev. Stat. § 327D-2 (Supp. 1987) ............. 26

Idaho Code § 39-4504 (Supp. 1989) ................. 26

Idaho Code § 39-4505 (Supp. 1989) ................. 27

Ill. Ann. Stat. ch. 110, paras. 801-1 to -12 (Smith-Hurd

SRG Soho nehS48 4602600 setneeseces 27

Ill. Ann. Stat. ch. 110 1/2, para. 702, 2(d) (Smith-Hurd

Ps ciniih ind dchb hen phe onprsecvcece 26

Ind. Code Ann. § 16-8-11-4 (Burns Supp. 1988) ...... 26

Ind. Code Ann. § 31-6-4-3(1), (2) (Burns 1989) ...... 28

Iowa Code Ann. § 144A.2(5) (1989) .............05. 26

Kan. Stat. Ann. §§ 65-28.101 to -28.109 (1985) ...... 27

La. Rev. Stat. Ann. § 13:1600(2) (West 1983) ........ 28

La. Rev. Stat. Ann. §§ 40:1299.58.1 to .10 (West Supp.

EE cc videens de ade bdbtededednsenisces 27

Me. Rev. Stat. Ann. tit. 22, § 2921(4) (Supp. 1988)... 26

Md. Health-Gen. Code Ann. § 5-605(1) (Supp. 1988) . 26

Adult Health Care Decisions Act, ch. 3, § 145B.03(2)

1989 Minn. Sess. Law Serv. 6, 7-8 (West) ....... 26

Adult Health Care Decisions Act, ch. 3, § 145B.04(6)

1989 Minn. Sess. Law Serv. 6, 7-8 (West) ....... 26

Adult Health Care Decisions Act, ch. 3, § 145B.13(2)

1989 Minn. Sess. Law Serv. 6, 12 (West) ....... 26

Minn. Stat. Ann. § 609.378(a) (West 1987) .......... 28

Minn. Stat. Ann. § 626.556(2) (West Supp. 1989) .... 28

Miss. Code Ann. §§ 41-41-101 to -121 (Supp. 1988)... 27

Mont. Code Ann. § 50-9-202(2) (1987) ............ .. 26

ix

Mont. Code Ann. §§ 53-5-503(1), (2) (1989) .......... 28 Act of Aug. 2, 1989, ch. 914, § 1(9), 1989 Or. Laws

ST ie is ciebueucescaebivadianesds 27

Mo. Ann. Stat. § 210.110(5) (Vernon Supp. 1989) .... 28 Act of Aug. 2, 1989, ch. 914, § 6, 1989 Or. Laws 1752,

Mo. Ann. Stat. § 211.447(2)(2)(d) (Vernon Supp. 1989) 28 A ih i La 27

Mo. Ann. Stat. § 459.910(3) (Vernon Supp. 1989) .... 26 Act of Aug. 2, 1989, ch. 914, § 16(1) 1989 Or. Laws 1752,

Mo. Ann. Stat. §§ 475.010 to 475.480 (Vernon 1956 & UN VuWAN aM aNON She basansedccacscccvecs 28

Supp. 1989) .... 2.66. cee eee cece eee e eee ees 11 Or. Rev. Stat. § 97.050(3) (1987) ........... 0000000. 26

Mo. Ann. Stat. § 475.110 (Vernon 1956 & Supp. 1989) 11 Or. Rev. Stat. § 163.200(1),(2) (1983) ............... 28

Mo. Ann. Stat. § 475.120 (2)(3) (Vernon 1956 & Supp. Pa. Stat. Ann. tit. 11, § 269-1(3) (Purdon 1965) ...... 28

RTS ARORA erie 11 teh.) xe

Mo. Ann. Stat. § 475.120 (6) upp. 1568) .......... = R.I. Gen, Laws §§ 23-4.10-1 to -2 (Supp. 1988) ...... 27

Nev. Rov. Stat. © SUSSES. MG) STNES) .....-.--+--+- - S.C. Code Ann. § 44-77-20(b) (Law Co-op. Supp. 1988) 26

Nev. Rev. Stat. $8 460.560 te S50 (0867) ........... si Tenn. Code Ann. § 32-11-103(5) (Supp. 1988) ........ 26

Nev. Rev. Stat. $§ 449.800 to .860 (1957) ........... ™ Tex. Rev. Civ. Stat. Ann. art. 4590h, §§ 1-11 (Vernon

N.M. Stat. Ann. §§ 24-7-1 to -10 (1986) ............ 27 I one hae riaueke us deudeddéusanidcne 27

N.C. Gen. Stat. §§ 90-320 to -323 (1985) ............ 27 Utah Code Ann. § 75-2-1103(6)(b) (Supp. 1989) ...... 26

N.D. Cent. Code § 23-06.4-02(4) (Supp. 1989) ....... 26 Utah Code Ann. § 75-2-1106 (Supp. 1989) .......... 27

N.J. Stat. Ann. § 9:6-1 (West Supp. 1989) .......... 28 Va. Code Ann. §§ 54. 1-2981 to 2992 (1988 & Supp. 1989) 27

N.J. Stat. Ann. § 9:8.21(c) (West Supp. 1989) ....... 28 Vt. Stat. Ann. tit. 18, §§ 5251-5262 (1987) .......... 27

N.H. Rev. Stat. Ann. § 137-H:2 (II) (Supp. 1988) .... 26 Vt. Stat. Ann. tit. 14, §§ 3451-3467 (Supp. 1988) .... 27

Okla. Stat. Ann. tit. 10, § 1101(4) (West Supp. 1989) . 28 Vt. Stat. Ann. tit. 14, § 3466(b) (Supp. 1988) ....... 27

Okla. Stat. Ann. tit.10, § 1130(B) (West 1987) ....... see V.1. Code Ann. tit. 5, § 2502(20) (Supp. 1989) ....... 28

Okla. Stat. Ann. tit. 21, § 845(B)(1) (West Supp. 1989) 28 Wash. Rev. Code Ann. §§ 70.122.010 to .905 (Supp.

Okla. Stat. Ann. tit. 63, § 3080.4(B) (West Supp. 1989) 28 NG Se ei tt 27

Okla. Stat. Ann. tit. 63, § 3102(4) (West Supp. 1989). 26 W. Va. Code § 16-30-3 (1985) ................00000. 26

Okla. Stat. Ann. tit. 63, § 3080.3 (West Supp. 1989) . 28 Wis. Stat. Ann. § 154.01(5)(b) (1989) ............... 26

Okla. Stat. Ann. tit. 63, § 3080, 4 (West Supp. 1989) . 28 Wyo. Stat. setae mae PDO SEN erage SB 26

INTERESTS OF AMICI CURIAE

The Association for Retarded Citizens of the United States

(ARC) is the largest voluntary organization in the United

States devoted to securing the rights of, and effective services

for, the approximately 6,000,000 citizens with mental retarda-

tion in this nation. ARC has a national membership of more

than 160,000 people. Members include persons with mental

retardation and their parents. ARC has approximately 1,300

state and local chapters throughout the country. Members of

Congress, state legislatures, rulemaking authorities, and the

courts recognize ARC as a leading advocate for citizens with

mental retardation. Since 1973, ARC has publicly and uni-

formly condemned the practice of withholding nutrition and

hydration on the basis of mental disability. See Appendix A.

The Association for Persons with Severe Handicaps (TASH)

(formerly the American Association for the Education of the

Severely/Profoundly Handicapped) was founded in 1974 to

develop, advocate, and implement laws to benefit individuals

with severe or profound disabilities. TASH strongly opposes

any approach authorizing third-party decisionmaking to forgo

nutrition and hydration from incapacitated persons on the

basis of mental disability. See Appendix B.

The Ethics and Advocacy Task Force of the Nursing Home

Action Group advocates needed medical care and treatment for

residents of nursing homes and long-term care facilities. Such

persons are vulnerable to discrimination based on disability,

illness, age, or unjust economic priorities. The Ethics and

Advocacy Task Force is a committee of the Nursing Home

Action Group, a non-profit corporation with membership

throughout the United States. Founded in 1983, the Nursing

Home Action Group promotes the rights and interests of nurs-

ing home residents through legislation, advocacy, counseling,

and networking. The majority of members of the Ethics and

Advocacy Task Force have permanent physical or mental dis-

abilities and are indigent.

l

The Medical Issues Task Force of the United Handicapped

Federation (UHF) has participated as an amicus in several

court cases involving threats to the provision of treatment and

care for persons with disabilities. The United Handicapped

Federation is a national disability rights coalition of 51 organi-

zations with over 15,000 individual members. The UHF Board

of Directors resolved in 1986 that full access to food and fluids,

including sustenance administered by artificial means, is a

basic right of all persons regardless of age or disability. See

Appendix C.

The parties have consented in writing to the filing of this

Brief. Copies of the written consents are on file with the Clerk

of the Supreme Court.

SUMMARY OF ARGUMENT

The Missouri Supreme Court placed appropriate substantive

and procedural limits on the authority of state-appointed

guardians to make medical decisions on behalf of incapacitated

persons. These safeguards protect the lives and well-being of

all similarly vulnerable persons with mental disabilities. ,

The Missouri court’s ruling is consistent. with accepted con-

stitutional norms, federal and state law, and sound public pol-

icy. The court correctly held that a ward’s individual liberties

may not be fully exercised by state-appvinted guardians. The

right of guardians to make decisions governing the disposition

of incapacitated adults stems from the state’s authority to act in

the ward’s best interests. The nature and history of guard-

ianship law amply support the Missouri court’s conclusions.

Petitioners’ counter-assertion of constitutional authority to

withhold food and fluids from Ms. Cruzan would imperil the

lives and well-being of all incapacitated persons whose care

depends on the conduct of guardians or other surrogates.

The Missouri Supreme Court was free under the United

States Constitution to require state-appointed guardians to act

pursuant to a strong interest in the preservation of life. Like-

wise, the court properly considered the non-burdensome

nature of providing food and fluids by tube to Ms. Cruzan. The

court’s reasoning prevents “quality of life” assessments from

being employed that would endanger the lives and well-being of

all persons with long-term mental disabilities.

Finally, the Missouri Supreme Court decision comports with

federal constitutional guarantees, Congressional policy, and

particular laws of the states. The court correctly recognized

the overriding value of Ms. Cruzan’s right to live and her right

to equal protection of the law. Similarly, the court’s decision

mirrored Congressional and state laws by refusing to apply a

standard of care based on level of disability and by refusing to

authorize the withholding of food and fluids without the

express consent of Ms. Cruzan.

ARGUMENT

I. The Missouri Supreme Court Ruling Should Not Be Dis-

turbed; Reversal Would Thwart The Efforts Of States To

Protect Persons With Mental Disabilities And Would

Jeopardize The Life And Well-Being Of Not Only Ms.

Cruzan, But All Similarly Vulnerable Persons.

The outcome of this case potentially threatens the lives and

well-being of countless numbers of persons with mental dis-

abilities in the United States.

There are more than 10,000 people in the United States with

Ms. Cruzan’s condition; all require assistance in obtaining sus-

tenance. Brief of Amicus Curiae American Academy of Neu-

rology In Support of Petitioners at 3. But the circle of similarly

vulnerable persons extends much wider. An estimated 1.5 mil-

lion Americans have severe dementia, and this population is

expected to increase 60 percent by the year 2000. Office of

Technology Assessment, Congress of the U.S., Losing a Mil-

lion Minds: Confronting the Tragedy of Alzheimer’s Disease

and Other Dementias 3 (1987). In addition, 750,000 to 1,000,000

persons have Alzheimer’s Disease. Martin, Update on Demen-

tia of the Alzheimer Type, 40 Hospital & Community Psychia-

try 593 (1989). Four out of every 10,000 (or approximately

100,000) persons in this country have autism. Ritvo, Freeman,

Pingree, Mason-Brothers, Jorde, Jenson, McMahon,

Petersen, Mo & Ritvo, The UCLA-University of Utah Epi-

demiologic Survey of Autism: Prevalence, 146 Am. J. Psychia-

try 194, 199 (1989). Finally; Americans with mental retardation

number as many as 7.5 million persons. Munro, Epidemiology

and the Extent of Mental Retardation, 9 Psychiatric Clinics of

North America 591, 597 (1986). Like Ms. Cruzan, many of these

persons are incapable of making decisions regarding their

treatment or care.

At minimum, 848,100 people each year in the United States

receive tube (enteral) feeding as a “life-sustaining technology”

in hospitals, nursing homes, and in their homes. Office of

Technology Assessment, Congress of the U.S., Life-Sustain-

ing Technologies And The Elderly 294 (1987). Of the 35,518

nursing home residents in the State of Missouri, 13,771 require

some form of assistance in consuming nourishment; an addi-

tional 1,159 receive nutrition and hydration by tube. Corre-

spondence from William Crochunis, Health Care Financing

Administration, U.S. Dept. Health and Human Services, to

Teresa Kealy (Aug. 29, 1989). There are 437,634 nursing home

residents in the United States who require some form of

assistance in consuming nourishment. /d. An additional 35,873

receive nutrition and hydration provided by tube. /d. In Cal-

ifornia alone, almost two thirds (63%) of the 6,880 residents in

state facilities for persons with developmental disabilities

require full or partial assistance in eating. See Brief in Opposi-

tion to Motion for Preliminary Injunction, Appendix C,

Sanchez v. Fairview Developmental Center, No. CV 88-0129

FFF (Tx) (C.D. Cal. filed Feb. 22, 1988) (on Mar. 30, 1988, court

denied motion for preliminary injunction filed by parents/

guardians seeking to terminate provision of food and water

through a gastrostomy tube to ward in “light comatose” state).

See generally, Johnson, Witholding Fluids and Nutrition;

Identifying the Populations at Risk, 2 Issues L. & Med. 189

(1986).

For this Court to hold with the Petitioners and against the

decision of the Missouri Supreme Court, it must decide that the

United States Constitution places the interests and very lives

of these people virtually in the hands of their guardians or

other surrogates without affording the wards any significant

state protection. To the contrary, as your amici will show, the

Constitution fully supports the reasoning of the Missouri

Supreme Court's decision.

II. The Missouri Supreme Court Ruling Is Consistent With

The United States Constitution And Long-Standing

Legal Tradition Governing The Disposition Of Mentally

Incapacitated Adults.

Mentally incapacitated persons such as Ms. Cruzan retain

rights and liberty interests under the Constitution. See Par-

hamv. Jd.R., 442 U.S. 584, 600 (1979); Thompson v. Oklahoma,

108 S. Ct. 2687, 2693 n.23 (1988); DeShaney v. Winnebago Dept.

of Social Services, 109 S. Ct. 998, 1002-03 (1989). The State may

not subject these persons to unnecessary confinement or

unwarranted treatment. Parham v. J.R., 442 U.S. 584, 600

(1979). One way that the State affords protection to persons

with disabilities is through the appointment of guardians,

sometimes family members, to act in the best interests of their

wards. In re Phillip B., 139 Cal. App. 3d 407, 419, 188 Cal.

Rptr. 781, 788 (1983). Parents have independent rights in the

custody and control of their minor children. Lassiter v. Depart-

ment of Social Services, 452 U.S. 18, 27 (1981). Parents or

others in special circumstances may have standing to assert

the rights and interests of others. Youngberg v. Romeo, 457

U.S. 307, 309-10 (1982) (guardian/parent has standing); Jn re

Quinlan, 70 N.J. 10, 34, 42, 355 A.2d 647, 660-61, 664, cert.

denied, 429 U.S. 922 (1976). (guardian has standing to assert

incapacitated person's rights, but no independent r'ght of his

own).

This Court has never held, however, that the liberty inter-

ests of one person are wholly transferred to a surrogate, by

operation of constitutional law, when the person is unable

herself to exercise them. Rather, this Court has held only that

the personal liberties enjoyed by persons incapable of making

their own decisions may only be “meaningful” when “exercised

by agents with the best interests of their principals in mind.”

Thompson v. Oklahoma, 108 S. Ct. at 2693 n.23 (emphasis

added).

Here lies the heart of the urgent controversy now before this

Court: What are Ms. Cruzan’s best interests, and who deter-

mines them?

The Missouri Supreme Court held that Ms. Cruzan’s guard-

ians would exceed their otherwise legitimate statutory author-

ity by refusing her food and fluids because this would not be in

Ms. Cruzan’s best interests. The court based its holding on a

careful evaluation and balancing of state public policy consid-

erations, constitutional values, the logic of conflicting claims —

and finally and most importantly on its belief that care provided

by “artificial hydration and nutrition” is not “oppressively bur-

densome to Nancy in this case,” especially since death was the

inevitable consequence of nontreatment. Cruzan v. Harmon,

760 S.W.2d 408, 423-24 (Mo.bane 1988)(emphasis in original).

Rather, sustenance is more properly to be regarded as a benefit

to Ms. Cruzan — an act of caring and compassion for another.

The Petitioners as guardians [hereinafter “guardians”

argue, however, that “[sJince Nancy can no longer speak and

since she did not execute express directives before her acci-

dent, her right to have her family or any other surrogate

decisionmaker participate in her medical treatment decisions,

and her right to be free from unwarranted, state-ordered

physical invasion of her body, are lost in Missouri.” Brief for

Petitioners at 20 [hereinafter “P.B.”]. The United States Con-

stitution, they claim, demands a different result: “the right to

have. . . [the] decision [to withhold food and fluids from her]

made by an appropriate surrogate decisionmaker — her fam-

ily.” P.B. at 29.

Assuming the validity of the Missouri Supreme Court's find-

ing that there was no clear and convincing evidence of Ms.

Cruzan’s intention regarding the provision of food and fluids to

her,! your amici argue that the Constitution provides no sup-

! Your amici take no position on whether or not the Missouri Supreme

Court properly concluded that there was insufficient evidence regarding Ms.

Cruzan's intent regarding the provision of food and fluids to her. The clear and

convincing standard of proof required by the Missouri court is, however,

appropriate in view of the constitutionally protected rights at stake in declin-

ing sustenance necessary for life. See this Brief at 20-23. Brady v. United

States, 397 U.S. 742, 748 (1969)(“waivers of constitutional rights must be

knowing, intelligent acts done with sufficient awareness of the relevant

circumstances and likely consequences”); Fuentes v. Shevin, 407 U.S. 67, 94

n.31 (1971)(“in the civil no less than the criminal area, courts indulge every

reasonable presumption against waiver [of constitutional rights].”);

Addington v. Texas, 441 U.S. 418, 433 (1979) (“clear, unequivocal and convine-

(footnote continued)

8

port for the guardians’ attack on the Missouri court's decision.

Ms. Cruzan’s liberty interest in refusal or acceptance of a

“bodily intrusion” necessary to prevent death by dehydration

and malnutrition is not “lost” in Missouri as the result of that

state’s Supreme Court decision. She is unable to exercise her

interest in one way or the other as the result of her accident. If

her liberty interest is to be “meaningful” at all, therefore, then

it must be exercised by another in her best interests. Her

guardians claim that the Constitution bestows upon them the

unreviewable authority to exercise her right to refuse food and

fluids. They urge that the “state should not be involved at all” in

this decisionmaking (P.B. at 39), and their position would bar

any judicial review in cases such as this. The Missouri court, as

the final arbiter of Ms. Cruzan’s best interests, determined that

it was not in her interests to die from lack of sustenance.

The liberty interest in refusing bodily intrusions claimed by

Ms. Cruzan’s guardians against the Missouri court decision is

exceedingly broad, arising from the common lawW rule that any

unconsented touching is battery. See Byrn, Compulsory Life-

saving Treatment for the Competent Adult, 44 Fordham L.

Rev. 1, 5-6 (1975). [f this liberty interest may be exercised by a

surrogate without supervision by civil authority, then the sur-

rogate might not only be empowered to refuse food and fluids,

Footnote 1 continued

ing” burden of proof must be met before guardian can waive another's con-

stitutionally protected freedom against confinement). See also In re West-

chester County Medical Center (O'Connor), 72 N.Y.2d 517, 532 n.4, 534

N.Y.S.2d 886, 893 n.4, 531 N.E.2d 607, 614 n.4 (1988)(clear and convincing

evidence standard is appropriate burden for proving an intent to refuse life-

sustaining care since “there are numerous instances in which the law refuses

to recognize the exercise or waiver of an important right unless the intent to

do so is clearly manifested”); Jn re Peter, 108 N.J. 365, 378, 529 A.2d 419, 425

(1987)(clear and convincing standard applied to determination of patient's

treatment preferences); Leach v. Akron General Medical Center, 678 Ohio

Misc. 1, 11, 426 N.E.2d 809, 815 (1980)(“because of the nature and importance

of the issues involved, this court would be remiss if it did not adopt the highest

possible civil standard of clear and convincing”).

but also, in principle, reject any form of treatment or care. Ms.

Cruzan, were she competent, could refuse to eat by s} .0n or

drink by straw; she could refuse to be turned to prevent bed

sores; she could refuse a single aspirin even if this were all that

were necessary to restore her to full capacity and health. And if

Ms. Cruzan’s liberty to consent to care or to refuse care were

fuily exercised by her guardians, then her guardians would be

likewise free to refuse “any touching” of Ms. Cruzan. Such

authority would expose countless persons to the idiosyncratic

predilections of their guardians and other surrogates. It would

risk the termination of treatment and care of all kinds for whole

populations of incapacitated people. See, e.g., /n re Phillip B.,

139 Cal. App. 3d 407, 188 Cal. Rptr. 781 (1983) (parents refused

to give consent to surgery for child with Downs syndrome);

Hollander, Euthanasia and Mental Retardation: Suggesting

the Unthinkable, 27 Mental Retardation 53 (1989); Wolf-

ensberger, The Killing Thought in the Eugenic Era and

Today: A Commentary on Hollander’s Essay, 27 Mental

Retardation 63, 64 (1989).

The guardians suggest, however, that the State could inter-

vene if such decisions were “irrational and abusive.” P.B. at 39

n.24. They thus concede that the State througi its legislative or

judicial functions may intervene to protect the best interests of

principals in some cases. But if Missouri could legitimately

decide as a matter of state policy and contrary to a surrogate’s

personal judgment that, for example, a principal's best inter-

ests are furthe’ -d by educational or rehabilitative services, the

provision of pain killers, or ordinary nursing care, then surely

the State might also conclude that Ms. Cruzan’s best interests

are served by continuing to provide her nutrition and hydration

necessary to sustain her life.

The guardians’ claim that Ms. Cruzan has been denied the

“right” to have an “appropriate surrogate decisionmaker”

decide that she should die by malnutrition and dehydration is,

from this perspective, plainly misconceived. The “appropriate

surrogate decisionmaker” for incapacitated adults like Ms.

10

a

Cruzan is finally the civil authority with ultimate jurisdiction

over her person — the Missouri Supreme Court — and it has

decided that she should not die in this fashion.

The guardians can make no superior claim to the authority of

the Missouri Supreme Court in this regard. Guardianship has

been, from its very inception, a creature of the State. In early

medieval England, guardianship of the person and property of

people with mental disabilities originally vested in the lord of

the manor. S. Brakel, J. Parry & B. Weiner, The Mentally

Disabled and the Law 369 (3d ed. 1985) [hereinafter “The

Mentally Disabled and the Law”). In the fourteenth century,

the duty of caring for people with mental disabilities or ill-

nesses was assumed by the Crown, which delegated the

responsibility to the Chancellor. /d. (citing De Praerogativa

Regis, 17 Edw. 2, es 9, 10 (1324)). Chancery courts thus

assumed the duty to determine whether a person was so inca-

pacitated that he or she required appointment of a committee of

the person, and they maintained the duty of supervising and

controlling the committee to guard against abuse of the person

or the person's interests. Jd. See also S. Herr, Rights and

Advocacy for Retarded People 9-15 (1983). “For the lord chan-

cellor is, by right derived from the crown, the general and

supreme guardian of all infants, as well as idiots and lunatics;

that is, of all such persons as have not discretion enough to

manage their own concerns.” 1 W. Blackstone, Commentaries*

463.

In the United States, the same jurisdiction over incapaci-

tated persons was assumed by the courts of equity; ultimate

authority was vested in the people rather than the Crown. The

Mentally Disabled and the Law 369 (citing 2 L. Shelford, A

Practical Treatise on the Law Concerning Lunatics, Idiots,

and Persons of Unsound Mind (1833); 2 J. Reeves, History of

English Law 307-8 (1814)). See also 2 J. Kent, Commentaries*

226. This power of the parens patriae (“parent of the country”)

emanates from the State's traditional role as sovereign and

guardian of persons under legal disabilities. Black’s Law Dic-

ll

tionary 1003 (5th ed. 1979); State ex rel Standefer v. England,

328 S. W.2d 732, 738 (Mo. Ct. App. 1959). The authority inher-

ent in equity courts was later codified in state guardianship

laws (e.g., Mo. Ann Stat. §§ 475.010 to 475.480 (Vernon 1956 &

Supp. 1989)). See The Mentally Disabied and the Law 370

(citing In re Estates of Vicic, 79 Ill. App. 3d. 383, 398 N.E.2d

420 (1979)). See also 39 Am. Jur. 2d Guardian and Ward § 24

(1968 & Supp. 1989). Courts retain the dirty to supervise guard-

ians to assure that the guardians act in the best interests of

their wards. Standefer, 328 S.W.2d at 738; In re Hymes, 102

Misc. 2d 821, 823, 424 N. Y.2d 608, 610 (Sur. Ct. 1979); Mo. Ann.

Stat. §§ 475.110, 475.120(2)(3) (Supp. 1989); 39 Am. Jur. 2d

Guardian and Ward § 62 (1968 & Supp. 1989). Guardians are

themselves officers of the court. Jn re Cordes’ Estate, 116

S.W.2d 207, 209 (Mo. Ct. App. 1989); Snyder v. United States,

134 F. Supp. 319, 322 (W.D.N.C. 1955).

Case law emphasizes the guardian's inferior relationship by

affirming that the court with jurisdiction over a guardianship

matter is “the superior guadian.” 39 Am Jur. 2d Guardian and

Ward § 1 (1968) (citing Jn re Duren, 355 Mo. 1222, 1229, 200

S.W.2d 343, 347 (1947); Grayson v. Linton 62 Idaho 695, 701,

125 P.2d 318, 320 (1942)). A guardian’s authority is civil in origin,

not personal; the guardian has no authority other than that

vested by civil authority. Trenton Trust v. Western Surety, 599

S.W.2d 481, 489 (Mo. 1980); Scott v. Royston, 223 Mo. 568, 609,

123 S.W. 454, 466 (1909). This authority is subsidiary to the

State’s and therefore must be informed by objective evalua-

tions of the best interests of wards by the State.

A state might choose to delegate to guardians the authority

to terminate life-sustaining treatment or care. See, e.g., In re

Quinlan, 70 N..J. at 42, 355 A.2d at 664. A state might instead

subject such decisions to judicial review without dispositive

regard to a guardian's views. See, e.g., Superintendent of

Belchertown State School v. Saikewicz, 373 Mass. 728, 758-59,

370 N.E.2d 417, 434-35 (1977). Or, as in the present case, a state

might choose to scrutinize closely the care provided to protect

12

particularly vulnerable persons or to further the policies of

specific state statutes. See also, e.g., In re Conroy, 98 N.J. 321,

381-84, 486 A.2d 1209, 1240-42 (1985).

Our law and tradition have never dictated a pre-ordained

distribution of powers between civil authority and guardian.

They have required only that the civil authority and the guard-

ian that it appoints act in a ward's best interests — with final

power to determine what those best interests are resting with

the civil authority. Surely, ifa guardian cannot “seek admission

of his ward to a mental health or mental retardation facility for

more than thirty days for any purpose without court order”

(Mo. Ann. Stat. § 475.120(5) (Supp. 1989)), then guardians

cannot legitimately claim that they should have unreviewabie

discretion to order the deaths of their wards by dehydration

and malnutrition.

Aware of the weakness of claiming a right for a guardian to

exercize Ms. Cruzan’s constitutionally recognized rights, the

guardians instead stress the parental rights and familial inter-

ests of Mr. and Mrs. Cruzan, appointed as guardians in this

case. P.B. at 22-29.

If Ms. Cruzan were an unemancipated minor, then they could

have asserted independent, constitutionally recognized rights

to her custody and control as parents. But Ms. Cruzan was 25

years old and married at the time of her accident. She was an

independent adult. Her parents could not then and can not now

claim any special constitutional prerogative over her. They may

have a prior claim to be appointed her guardians and, in prac-

tice, their decisions might be given a certain deference because

of their relationship to her. Their legal authority over her is not,

however, broader in scope than that of any other legal guardian

— whether family member or stranger.

In any case, the guardians’ assertion that “family decision-

making” should govern withdrawal of life-sustaining care from

adult members, if accepted, would be practically unworkable in

many cases. Guardians are often appointed precisely because

]

13

there is conflict within or neglect by the family regarding the

interests of an incapacitated member. See, e.g., In re Guard-

ianship of Phillip B., 139 Cal. App. 3d 407, 188 Cal. Rptr. 781

(1983) (court determined that biological parents were not

appropriate guardians for minor and that the court had juris-

diction to determine who will act in the ward’s best interests).

It is unclear for many incapacitated adults who should be

properly designated as a representative of that person’s “fam-

ily” or what the relative decisionmaking authority of each mem-

ber should be. These problems may be further compounded by

divorce and remarriage within families, alienation and hostility

among family members, the self-interest of some family mem-

bers, and the now common phenomenon of relocation of family

members at wide distances. Ali of these considerations may

make the maintenance of the continuing, intimate family rela-

tions suggested by the guardians here improbable or delusory.

And what of the many older incapacitated people and people

with mental retardation, illnesses, or other disabilities who

have no families or have been abandoned by them? See, e.g.,

Superintendent of Belchertown State School v. Saikewicz, 373

Mass. 728, 731, 370 N.E.2d at 417, 420 (1977)(family of institu-

tionalized 67-year-old man with severe mental retardation

refused to become involved in decision concerning consent to

medical treatment or any aspect of his life).

Moreover, the guardians’ appeal to family decisionmaking

authority suggests either that family members who have been

appointed guardians should have special powers to withdraw

life-sustaining care that guardians unrelated to the incapaci-

tated person do not, or that unrelated guardians should be

regarded as though they were family members and have the

same authority to withdraw such care.

The former argument, if accepted, would apparently render

the guardianship statutes of every jurisdiction unconstitu-

tional for failure to provide special latitude to family members

who have been appointed guardians. It would demand a dual

system of guardianship in which guardians who are family

14

members might withdraw life-sustaining care from wards at

will, while those who are unrelated to their wards could not.

The latter argument, if accepted, would impute to strangers,

institutions, and bureaucrats the same kind of intimate rela-

tionship that inheres to the family, bestowing upon them what-

ever privileges are acknowledged vider the Constitution to

arise from common blood or marriage. Public guardians seek

the same authority that Ms. Cruzan’s guardians here seek. See,

e.g., In re Prange, 520 N.E.2d 946 (1988), vacated, 527 N.E.2d

303 (Ill. 1988); Rasmussen v. Fleming, 741 P.2d 674 (Ariz.

1987). To bestow upon them the authority to withhold or with-

draw life-sustaining care from their wards at will and without

court supervision would pose unprecedented danger to the

lives and well-being of the many incapacitated persons who are

alone, abandoned, or unloved — and who could then rely only

on often indifferent bureaucracies to maintain their well-being

and their very lives. See Parham v. J.R., 442 U.S. at 637-39

(Brennan, J., concurring in part, dissenting in part).

The guardians improperly rely on an abstract, generalized,

familial interest in making decisions regarding their family

members extrapolated from the decisions of this Court in other

contexts to urge that it endows constitutional protection on

familial decisions to deprive adult family members of life-sus-

taining care. To the contrary, our consistent law and tradition

do not vest families with ultimate authority to determine the

best interests of incapacitated adults. From the English

Crown, to chancery court, to equity court, and through the

guardianship statutes of the several states, the final authority

over incapacitated adults has always been understood to reside

with civil authority exercising inherent or statutorily codified

parens patriae power — as the Missouri Supreme Court did in

this case. See also, e.g., In re Storar, 52 N.Y.2d 363, 381, 438

N.Y.S.2d 266, 275, 420 N.E.2d 64, 73, cert. denied, sub. nom.

Storar v. Storar, 454 U.S. 858 (1981).

There is no federal constitutional basis upon which to under-

cut this authority. To do so would fly in the face of a long legal

tradition that has attempted to protect incapacitated people

15

through court supervision of guardians and that has flatly

denied guardians and other surrogates final authority over

their persons or property.

Ms. Cruzan unquestionably retains rights or liberty inter-

ests in her incapacitated state. But because she is physically

and mentally unable to issue her own instructions, true respect

for her rights and interests can only be manifested through an

objective assessment of her best interests. The Missouri

Supreme Court’s evaluation of Ms. Cruzan’s best interests is

consistent with the Constitution and does not encroach upon

any of her constitutionally protected interests.

III. The State May Properly Assert An Unqualified Interest

In The Protection Of Life Regardless Of Degree Of

Disability.

The Missouri court asserted that Missouri's “unqualified

interest” in the preservation of life, together with Ms. Cruzan’s

liberty interest in accepting treatment and the relatively non-

burdensome and beneficial nature of her care, warranted con-

tinuation of her feeding and hydration. Cruzan, 760 S.W.2d at

420. The court properly rejected a rule that discounts the

state’s interest in life on the basis of an assessment of its

“quality.” Jd. In contrast, the guardians assert that such an

unqualified interest prevents “quality of life” assessments that

are “critical to preservation of individual liberty.” P.B. at 38.

The freedom to implement decisions made by persons relat-

ing to the quality of their lives and circumstances is implicit in

the liberties guaranteed by the Constitution. But the guard-

ians’ claim is relevant to the controversy now before this Court

only if the Constitution demands that the state’s interest in the

preservation of life must diminish as “quality of life” declines.

The implications of such a proposition deeply disturb your

amici, who represent and seek to improve the quality of oppor-

tunities for people with disabilities and their families. It plainly

suggests a constitutionally imposed, sliding-scale standard of

16

treatment and care that devalues the lives and well-being of

persons with disabilities and others who fail some notion of

“quality control.”

If the Constitution requires that the state's interest in the

preservation of life must be entirely discounted for all persons

like Ms. Cruzan, then why should it not also be discounted for

others with disabilities? And if the state’s interest in life itself

must be so discounted, then why not in relation to the entire

range of state interests that support the various social and

economic laws intended to improve the lives and well-being of

the population?

The guardians dismiss such concerns by implying that “irra-

tional” quality assessments would be subject to judicial review.

P.B. at 39 n.24. But the sad history of neglect and abuse of

persons with disabilities is far too fresh for your amici to take

comfort in such bland reassurances. See U.S. Comm’n on Civil

Rights, Medical Discrimination Against Children With Dis-

abilities 23-25 (1989); Herr, Civil Rights, Uncivil Asylums,

and the Retarded, 43 U. Cin. L. Rev. 679, 697-98 (1974); Bur-

gdorf & Burgdorf, A-Aistory of Unequal Treatment: The Qual-

ifications of Handicapped Persons as a “Suspect Class” Under

the Equal Protection Clause, 15 Santa Clara L. Rev. 855 (1975);

S. Herr, Rights and Advocacy for Retarded People 18-36 (1983).

A constitutionally required “quality of life” assessment could

not be confined only to those persons as seriously disabled as

Ms. Cruzan without relying upon arbitrary distinctions

between her condition and other impairments that cause per-

manent mental disabilities. Ms. Cruzan was held to be in a

“persistent vegetative state,” which simply denominates a set

of characteristics somewhere on the continuum between full

consciousness and total unconsciousness. There is no constitu-

tional basis for drawing a bright line on this continuum ** one

point or another. Such a distinction would stand on the shiiting

sands of somewhat arbitrary medical categories, classifica-

tions, and assessments based on changing diagnostic and tech-

nological expertise and developments.

17 -

Medical science may inform us whether the physical basis for

consciousness exists in light of observable phenomena, at least

as the phenomenon of consciousness is commonly understood.

“Consciousness” is not, however, a thing that can be easily

quantified or understood in its fullness, complexity, or mys-

tery. Ms. Cruzan and those with similar conditions may not be

conscious in the same sense that those who read this Brief may

be. Whatever loss of “consciousness” they may have is, in

another sense, simply a measure of their disability. But where

in the Constitution is the level or, indeed, the existence of

consciousness deemed a prerequisite to the assertion of a state

interest in the protection of the lives of human beings?

The same “unqualified” state interest in the protection of

human lives asserted by the Missouri Court supports the homi-

cide codes of the several states. Neither the common law nor

any state statute has ever recognized that taking the lives of a

class of human beings is justified or excused on account of the

biological status of persons whose lives are taken. From this

perspective, the Missouri court was not only justified to assert

an unqualified state interest in protection of human life, it was

perhaps obliged to do so.

IV. To Authorize Witholding Of Feeding And Hydration

From Ms. Cruzan Would Necessarily Authorize With-

holding Other Equivalent Or More Socially Burden-

some Forms Of Care From People With Significant

Mental Disabilities.

The Missouri court “refuse[d] to succumb to the semantic

dilemma created by medical determinations of what is [medi-

cal] treatment. . . .” Cruzan, 760 S.W.2d at 423. “The issue is

not whether the continued feeding and hydration of Nancy is

medical treatment; it is whether feeding and providing liquid to

Nancy is a burden to her.” Jd. (emphasis in original). Indeed,

whether or not feeding and hydration by tube is categorized as

“medical treatment” is constitutionally irrelevant. The liberty

interest that requires deference here is the freedom to accept

18

or to reject bodily intrusions of any form — whether proposed

under the aegis of a physician, nurse, rehabilitation therapist,

or layman.

The issue thus before this Court is not simply whether Ms.

Cruzan’s guardians may withhold feeding and hydration pro-

vided by tube to her. It is whether the Constitution commands

the State to empower surrogates to withhold or withdraw any

and all forms of treatment or care from incapacitated persons

— or at least those forms deemed similar to feeding and hydra-

tion by tube.

If surrogates may at will withhold or withdraw such a bene-

ficial and minimally burdensome form of life-sustaining care as

tube-feeding, then it would follow that surrogates would also

be constitutionally authorized to order the withholding from

incapacitated persons of a large number of treatments and

services necessary to the well-being, rehabilitation, or inde-

pendence of people with disabilities. Many forms of care com-

monly given to persons with disabilities are far more

“intrusive” or “burdensome” than feeding and hydration by

tube.

If Ms. Cruzan were not turned with some frequency, then

she would quickly develop decubitus ulcers (bed sores) that

would, in time, result in infections. Left untreated, they would

cause her death. If her room were not heated in the winter,

then she might die of hypothermia. Both ordinary nursing care

and environmental maintenance require some level of technical

expertise and may be as costly, intrusive, or burdensome to

others as the enteral feeding the guardians wish to withhold

from her. Yet if the guardians are constitutionally authorized to

withhold food and fluids from their ward, then they might just

as easily decide to decline her nursing care or room tem-

perature maintenance.

It is generally no more difficult to provide sustenance by

tube to persons like Ms. Cruzan than through the usual manner

in which food and drink is prepared and provided either in a

19

hospital or at home. Complications may arise in the delivery of

sustenance by tube that require medical attention. But this is

true with regard to almost any mode of delivery, including

eating by mouth, or any type of diet. And if persons like Ms.

Cruzan are incapable of feeling pain, as the guardians assert

(P.B. at 27), then tube-feeding cannot burden them in this

regard. Feeding and hydration by tube through a gastrostomy,

in any event, generally causes no significant pain, discomfort,

or complications. Office of Technology Assessment, Congress

of the U.S., Life-Sustaining Technologies And The Elderly 282

(1987).

Many people with disabilities may be able to swallow, but

they are unable to secure food or liquids, prepare them for

consumption, or lift them to their mouths. Without the

assistance of others, whether described as “medical” or not,

these people would die just as surely as Ms. Cruzan will if the

guardians are authorized to carry out their proposal. Perhaps

there are meaningful distinctions between these forms of care;

perhaps not. What is certain is that the Constitution does not

distinguish between them, and the Missouri court should not

be faulted for likewise refusing to do so.

So anxiously do the guardians and their supporting amici

assert Ms. Cruzan’s right to refuse treatment that they would

sacrifice to it her right to receive humane treatment, disregard-

ing any requirement of a balanced judicial assessment of the

duty of care owed to persons with disabilities. Their concept of

personal autonomy is so expansive that it would survive even

when the potential for its autonomous exercise is no longer

present. And those for whom such personal autonomy is

claimed would be condemned to death by dehydration and

malnutrition — a death that is neither swift nor dignified.*

2 See Brophy v. New England Sinai Hospital, Inc., 398 Mass 417, 444 n.2,

497 N.E.2d 332, 641 n.2 (1986)(Lynch, J., dissenting in part) (citing trial court

findings on effects of withdrawing nutrition and hydration):

{His} mouth would dry out and become caked and coated with thick mate-

rial. His lips would become parched and cracked. His tongue would swell,

(footnote continued)

20

It is a concept of autonomy that must be rejected by this

Court.

V. The Missouri Supreme Court’s Holding Is Consistent

With The United States Constitution.

The Missouri Supreme Court struck a procedural and sub-

stantive balance of the individual, familial, and societal values

at stake in this case. The issue before this Court is whether the

United States Constitution demands some arrangement of

values other than that of the decision of the Missouri court.

Your amici argue that it does not and, indeed, that the Con-

stitution strongly supports the Missouri court's decision.

A. The Missouri Supreme Court Properly Balanced Ms.

Cruzan’s Right to Be Free of Unwarranted Bodily

Intrusions With Her Right to Live.

Ms. Cruzan has severe disabilities and requires total care.

Nonetheless, this Court has affirmed that individuals with “a

reduced ability to cope with and function in the everyday world

. . . rangling] from those whose disability is not immediately

evident to those who must constantly be cared for. . . have and

retain their substantive constitutional rights.” City of

Cleburne v. Cleburne Living Center, Inc. , 473 U.S. 4382, 442-47

(1985).

Footnote 2 continued

and might crack. His eyes would recede back into their orbits and his

cheeks would become hollow. The lining of his nose might crack and cause

his nose to bleed. His skin would hang loose on his body and become dry

and scaly. His urine would become highly concentrated, leading to burning

of the bladder. The lining of his stomach would dry out and he would

experience dry heaves and vomiting. His body temperature would become

very high. His brain cells would dry out, causing convulsions. His respira-

tory tract would dry out, and the thick secretions that would result could

plug his lungs and cause death. At some point within five days to three

weeks his major organs, including his lungs, heart and brain, would give

out and he would die. The judge found that death by dehydration is

extremely painful and uncomfortable for a human being. The judge could

not rule out the possibility that Paul Brophy could experience pain in such a

scenario. Paul Brophy’s attending physician described death by dehydra-

tion as cruel and violent.

21

On one hand, therefore, Ms. Cruzan retains a fundamental

right to live. On the other, she retains a right to be free of

unwarranted bodily intrusions. The Missouri Supreme Court

concluded that Ms. Cruzan’s best interests weigh in favor of

continued life sustained by nourishment. In view of the impor-

tance of her right to live and the contingent and subsidiary

nature of any right against bodily intrusions, together with the

comparative severity of harms should either right be denied,

the Missouri court’s balance is constitutionally faultless.

Because Ms. Cruzan is alive, she is a person who retains the

right to live, as explicitly guaranteed by the plain language of

the Fourteenth Amendment to the Constitution. The right to

exist is essentially “the right to have rights.” Furman v. Geor-

gia, 408 U.S. 238, 290 (1972) (Brennan, J., concurring). Thus,

any right against bodily intrusion is necessarily a lesser con-

stitutional value than the right to live. Conversely, “death is

the ultimate sanction.” Jd. at 286. Because of “its finality and

enormity, death . . . is in a class by itself.” Jd. at 287. Life’s ~

preeminent value may thus override the value attached to the

freedom from bodily intrusion, when the intrusion is for the

purpose of sustaining life and preventing death. The justifica-

tion is compelling: If Ms. Cruzan’s right to reject bodily intru-

sion is deemed paramount, and food and fluids are withheld

from her, then her right to exist — and thus her “right to have

the right” against bodily intrusions, with all her other rights —

would be extinguished by death.

This calculus underlies the best interests test~typically

applied to medical treatment decisions. It is employed in emer-

gency treatment cases, when the patient’s consent is prac-

tically unobtainable, and in those cases where a never-

competent patient needs life-sustaining care. It is consistent

with basic constitutional values and offends no constitutional

guarantees.

The guardians argue in essence that Ms. Cruzan has no right

to live that can be balanced against her right to be free of bodily

intrusions because her life is not “meaningful”. P.B. at 16, 39 n.

22

24. They describe her as “an incompetent person in a persistent

vegetative state without hope of ever recovering cognitive

interaction with the world around her.” P.B. at Question Pre-

sented. In essence, they thus claim that Ms. Cruzan’s perma-

nent mental disability and supposed lack of “cognitive

interaction” prevent “meaningful” life, which in turn negates

any consideration of her right to live — while, paradoxically,

they insist that she retains a right to refuse the life-sustaining

care that she now receives.

Their view is logically inconsistent and conflicts with this

Court’s assertion in Cleburne that disability does not

extinguish substantive constitutional rights. Surely, the

United States Constitution does not stand for the proposition

that people with permanent cognitive impairments have no

right to live, although they nevertheless retain the right to

reject care necessary to sustain their lives.

B. The Missouri Supreme Court’s Holding Is Consistent

With The Constitutional Guarantee Of Equal Protec-

tion.

The Equal Protection Clause of the Fourteenth Amendment

“is essentially a guarantee that all persons similarly situated

should be treated alike.” Cleburne, 473 U.S. at 439. The Mis-

souri court implicitly and correctly held that persons with

permanent cognitive impairments were similarly situated with

non-impaired persons with respect to the state’s interest in

preserving life. It also implicitly and correctly held that per-

sons permanently unable to make medical decisions were dif-

ferently situated from persons competent to make their own

medical decisions with respect to the state’s interest in protect-

ing autonomy.

Governmental distinctions based on mental disability must

be rationally related to a legitimate governmental concern.

Cleburne, 473 U.S. at 446. Thus, “the state may not rely on a

classification whose relationship to an asserted goal is so

attenuated as to render the distinction arbitrary or irrational.”

Id.

ter

23

4

The Missouri court refused to acknowledge a diminished

state interest in preserving life based on the sole fact that

persons in need of life-sustaining care are mentally incapaci-

tated. Mental capacity has no bearing on whether nutrition and

hydration will sustain life. Thus, it would be irrational to

conclude that mental disability diminishes the state's interest

in providing care that restores or supplants the ability to ingest

nutrients. Moreover, denying persons with mental disabilities

food or fluids solely because they lack some cognitive function

would be discrimination based on “mere negative attitudes”

against disability. See, id., at 448. “(T]he law cannot, directly

or indirectly, give [such biases] effect.” Palmore v. Sidoti, 466

U.S. 429, 433 (1984).

There is, however, a rational basis for recognizing that men-

tal incapacity alters the nature of the state's interest in and

obligation to protect autonomous decisionmaking. It is impos-

sible to elicit instructions from persons permanently unable to

interact with others. The distinction the Missouri court

implicitly drew between the liberty interests of competent

persons and incapacitated persons is therefore neither arbi-

trary nor irrational — it was necessary. The Missouri court

thus reasonably concluded that the state's interest in and obli-

gation to recognize an autonomous liberty interest was limited

to discovering whether Ms. Cruzan had expressly exercised

her right to choose or to refuse food and fluids before her

incapacity. It was therefore constitutionally reasonable for the

Missouri court to refuse to permit the “exercise” of Ms.

Cruzan’s autonomy rights by her guardians when the court

determined it was not in her best interests to die by dehydra-

tion and malnutrition.

VI. The Missouri Supreme Court Decision Is Supported By

Federal And State Law And Policy.

Although not directly at issue in this case, federal law and

policy strongly support the Missouri court’s refusal to discount

the state’s interest in the preservation of life on the basis of

24

disability, as well as its refusal to sanction the withholding of

food and fluids from Ms. Cruzan on account of her disability.

The laws and policies of several states, including Missouri, also

support the court's refusal to sanction Ms. Cruzan’s death by

dehydration or malnutrition.

A. The Missouri Supreme Court Decision Is Supported

By The Plain Language And Policy Of § 504 Of The

Rehabilitation Act Of 1973.

Section 504 of the Rehabilitation Act of 1973 provides in

relevant part: “No otherwise qualified handicapped individual

in the United States. . . shall, solely by reason of his handicap,

be excluded from the participation in, be denied the benefits of,

or be subjected to discrimination under any program or

activity receiving Federal financial assistance.” 29 U.S.C.A. §

794 (West Supp. 1989).

For purposes of § 504, a handicapped individual is defined as

anyone who “(i) has a physical or mental impairment which

substantially limits one or more of such person’s major life

activities, (ii) has a record of such an impairment, or (iii) is

regarded as having such an impairment.” 29 U.S.C.A. §

706(8)(B) (West Supp. 1989).

Any standard that permits forgoing of treatment, food, or

fluids based solely on the mental or physical disability of a

person whose treatment wishes are unknown would contradict

the intent expressed by the Rehabilitation Act. U.S. Comm’n

on Civil Rights at 61-78. The policy preference and plain lan-

guage of § 504 thus support the Missouri court’s decision to

maintain Ms. Cruzan’s food and fluids and its refusal to author-

ize withholding them from her solely because she is disabled.

B. The Missouri Supreme Court Decision Is Supported

By The Policy of The Child Abuse Amendments of 1984.

A Congressional standard for providing food and fluids to

infants with disabilities was originally enacted as part of the

25

1984 Amendments to the Child Abuse Prevention and Treat-

ment Act. See 42 U.S.C.A. § 5106a (West Supp. 1989). This law

requires state child abuse agencies receiving federal funds to

monitor, investigate, and remedy decisions to withhold neces-

sary medical treatment and care from infants with disabilities.

42 U.S.C.A. § 5106a(b)(10) (West Supp. 1989). According to the

regulations implementing this Congressional mandate, infants

with disabilities must always be provided “appropriate nutri-

tion and hydration.” 45 C.F.R. § 1340.15(b)(2) (1988). Failure to

provide food or fluids, even when an infant is terminally ill,

permanently comatose, or when medical treatment is other-

wise futile or “inhumane,” would constitute “neglect” under

the Amendments. Jd. The statute and its regulations draw no

distinction between food and fluids provided by tube or pro-

vided through any other means. See U.S. Comm’n on Civil

Rights at 79-92.

' State courts have frequently requested legislative guidance

in cases such as the one before this Court. The Congress has

provided such guidance, and it supports the decision of the

Missouri Supreme Court. Congress has established a clear

policy preference against withholding nutrition or hydration

from infants with disabilities. The Missouri court's refusal to

authorize the withholding of nutrition and hydration from an

adult with disabilities is fully consistent, therefore, with Con-

gressiona! policy.

C. The Missouri Supreme Court Decision Is Supported

By Numerous Laws And Policies Of Several States.

Several “living will” and durable power of attorney for health

care laws recognize that the administration of food and fluidsis _.

an exception to the “life-sustaining procedures” that may be -

withdrawn or withheld pursuant to these laws. Forty states

and the District of Columbia have “living will” laws that permit

persons to declare that life-sustaining treatment should be

withheld or withdrawn from them under certain circum-

stances. But eighteen states specifically exclude food and fluids

from “life-sustaining procedures” that can be forgone pursuant

26

to a “living will”.* Four states provide that the existence of a

“living will” does not affect the responsibility of the physician

or health care provider to provide food and fluids for a patient’s

comfort care or alleviation of pain.4 Two states do not allow food

or fluids to be withheld if death would result from malnutrition

or dehydration.® Two states provide for a specific indication in a

“living will” declaration whether or not “artificially” provided

food and fluids should be provided.® One state allows for an

explicit statement of intent in this regard,’ but where intent is

not stated, then “reasonable medical practice” includes oral

administration of food or water to a patient, who accepts it,®

and the “mere existence of a declaration or appointment of

proxy does not ... create a presumption .. . that the

declarant” would want food or fluids withdrawn or withheld.®

The “living will” laws of the thirteen remaining states do not

make any explicit reference to the provision of food and fluids.

3 Ariz. Rev. Stat. Ann. § 36-3201(4) (1986); Colo. Rev. Stat. § 15-18-103(7)

(1987); Conn. Gen. Stat. Ann. § 19a-570(1) (West Supp. 1989); Fla. Stat. Ann. §

765.03(3) (West 1986); Ga. Code Ann. § 31-32-2(5)(A) (1985 & Supp. 1989);

Haw. Rev. Stat. § 327D-2 (Supp. 1987); Ind. Code Ann. § 16-8-11-4 (Burns

Supp. 1988); lowa Code Ann. § 144A.2(5) (1989); Me. Rev. Stat. Ann. tit. 22, §

2921(4) (Supp. 1988); Md. Health-Gen. Code Ann. § 5-605(1) (Supp. 1988); Mo.

Ann. Stat. § 459.010(3) (Vernon Supp. 1989). N.D. Cent. Code § 23-06.4-02(4)

(Supp. 1989); N.H. Rev. Stat. Ann. § 137-H:2 (I]) (Supp. 1988); Okla. Stat.

Ann. tit. 63, § 3102(4) (West Supp. 1989); Or. Rev. Stat. § 97.050(3) (1987);

Utah Code Ann. § 75-2-1103(6)(b) (Supp. 1989); Wis. Stat. Ann. § 154.01(5)(b)

(1989); Wyo. Stat. § 35-22-101(a)(iii) (1988).

4 Ark. Stat. Ann. § 20-17-206(b) (Supp. 1987); Mont. Code Ann. §

50-9-202(2) (1987); S.C. Code Ann. § 44-77-20(b) (Law Co-op. Supp. 1988); W.

Va. Code § 16-30-3 (1985).

5 Ill. Ann. Stat. ch. 110 1/2, para. 702, § 2(d) (Smith-Hurd Supp. 1989);

Tenn. Code Ann. § 32-11-103(5) (Supp. 1988).

6 Alaska Stat. §§ 18.12.010(c), 18.12.040(b) (1986); Idaho Code § 39-4504

(Supp. 1989).

7 Adult Health Care Decisions Act, ch. 3, §§ 145B.03(2), 145B.04(6) 1989

Minn. Sess. Law Serv. 6, 7-8 (West).

® § 145B.13(2), 1989 Minn. Sess. Law. Serv. 6, 12 (West).

* § 145B.03(2), 1989 Minn. Sess. Law. Serv. 6, 7 (West).

27

The “living will” laws of the thirteen remaining states do not

make any explicit reference to the provision of food and fluids. '°

Eight states have durcble power of attorney for health care

laws, which permit persons to appoint surrogates to make their

medical treatment decisions. '! Of these, one state specifically

excludes food and fluids from the category of “life-sustaining”

procedures that can be withdrawn or withheld by a designated

surrogate.!2 One state allows a person to decide specifically

whether or not he or she should receive food and fluids. '* One

state excludes nutrition from the definition of “life-sustaining

procedures” that can be withheld or withdrawn by a surro-

gate, '4 although the person can specifically decide whether or

not to receive food and fluids.

Two states have specific statutory provisions creating the

presumption that every incompetent person wishes to receive

food and fluids necessary to sustain life that applies unless the

person clearly indicated otherwise or unless certain specified

Ala. Code §§ 22-8A-1 to -10 (1984); Cal. Health & Safety Code §§

7185-7195 (West Supp. 1989); Del. Code Ann. tit. 16, §§ 2501-2509 (1983); D.C.

Code Ann. §§ 6-2401 to -2430 (1989); Kan. Stat. Ann. §§ 65-28.101 to -28.109

(1985); La. Rev. Stat. Ann. §§ 40:1299.58.1 to .10 (West Supp. 1989); Miss.

Code Ann. §§ 41-41-101 to -121 (Supp. 1988); Nev. Rev. Stat. §§ 449.540 to .690

(1987); N.M. Stat. Ann. §§ 24-7-1 to -16 (1986); N.C. Gen. Stat. §§ 90-320 to

-323 (1985); Tex. Rev. Civ. Stat. Ann. art. 4590h, 1-11 (Vernon Supp. 1989); Vt.

Stat. Ann. tit. 18, §§ 5251-5262 (1987); Va. Code Ann. §§ 54.1-2981 to 2992

(1988 & Supp. 1989); Wash. Rev. Code Ann. §§ 70. 122.010 to .905 (Supp. 1989).

ll Cal. Civ. Code §§ 2430 to 2444 (West Supp. 1988); Idaho Code § 39-4505

(Supp. 1988); I. Ann. Stat. ch. 110, paras. 801-1 to -12 (Smith-Hurd Supp.

1988); Nev. Rev. Stat. §§ 449.800 to .860 (1987); Act of Aug. 2, 1989, ch. 914,

1989 Or. Laws 1752; R.1. Gen. Laws §§ 23-4. 10-1 to -2 (Supp. 1988); Utah Code

Ann. § 75-2-1106 (Supp. 1989); Vt. Stat. Ann. tit 14, §§ 3451-3467 (Supp. 1988).

12 Utah Code Ann. § 75-2-1106 (Supp. 1989).

13 Vt. Stat. Ann. tit. 14, § 3466(b) (Supp. 1988).

4 Act of Aug. 2, 1989, ch. 914, § 1(9), 1989 Or. Laws 1752-1753.

6 Act of Aug. 2, 1989, ch. 914, § 6, 1989 Or. Laws 1752, 1754.

28

and limited conditions exist.!* Food and fluids cannot be with-

held, however, if death would result from starvation or

dehydration under one statute unless the person had clearly

refused them prior to incompetence. !7

Finally, statutes applicable to other contexts likewise dem-

onstrate a clear preference for providing food and fluids to

persons with disabilities. State child abuse statutes typically

require that those with a duty of care toward a child provide the

child with adequate sustenance.'® In addition, state elder or

adult abuse statutes provide that dependent older persons

must be given adequate sustenance.! Finally, various state

nursing home laws mandate that adequate sustenance be pro-

vided to residents.?°

'6 Okla. Stat. Ann. tit. 63, §§ 3080.3, 3080.4 (West Supp. 1989); Act of Aug.

2, 1989, ch. 914, § 16(1) 1989 Or. Laws 1752, 1756-1757.

7 Okla. Stat. Ann. tit. 68, § 3080.4(B) (West Supp. 1989).

8 Okla. Stat. Ann. tit. 10, § 1101(4) (West Supp. 1989). See also, e.g., Alaska

Stat. § 47.17.070(6) (Supp. 1989); Cal. Penal Code § 11165.2 (West Supp. 1989);

Col. Rev. Stat. § 14-6-101(1) (1987); Fla. Stat. Ann. § 39.01(37) (West 1988);

Fla. Stat. Ann. § 415.503(8)(f) (West Supp. 1989); Ga. Code Ann. § 19-14-2(4)

(Harrison 1987); Ind. Code Ann. § 31-6-4-3(1), (2) (Burns 1989); La. Rev. Stat.

Ann. 13:1600(2) (West 1983); Minn. Stat. Ann. § 609.378(a) (West 1987); Minn.

Stat. Ann. § 626.556(2) (West Supp. 1989); Mo. Ann. Stat. § 210.110(5) (Vernon

Supp. 1989); Mo. Ann. Stat. § 211.447(2)(2)(d) (Vernon Supp. 1989); N.J. Stat.

Ann. § 9:6-1 (West Supp. 1989); N.J. Stat. Ann. 9:8.21(¢) (West Supp. 1989);

Okla. Stat. Ann. tit. 10, § 1130(B) (West 1987); Okla. Stat. Ann. tit. 21, §

845(B)(1) (West Supp. 1989); Pa. Stat. Ann. tit. 11, § 269-1(3) (Purdon 1965);

R.I. Gen. Laws § 11-9-5 (1981); and V.I. Code Ann. tit. 5, § 2502(20) (Supp.

1989).

19 Ala. Code § 38-9-5 (Supp. 1989); Ark. Stat. Ann. § 5-28-103 (1987); Cal.

Welf. & Inst. Code §§ 15610(c)(4), (d) (West Supp. 1989); Del. Code Ann. tit. 31

§ 3902(4) (1985); Mont. Code Ann. §§ 53-5-503(1), (2) (1989); Nev. Rev. Stat. §

200.5092. 1(b) (1987); Or. Rev. Stat. §§ 163.200(1), (2) (1983).

20 See, e.g., Fla. Stat. Ann. § 400.141(5) (West 1986). Numerous state

nursing home statutes prohibit abuse and neglect of nursing home residents,

and failure to provide nutrition and hydration has been held to constitute

(footnote continued)

29

Plainly, developing state law and policy do not regard the

provision of food and fluids by tube or otherwise as a matter

solely within the discretion of institutions, guardians, or other

surrogates. To the contrary, these laws and policies strongly

support the judgment of the Missouri Supreme Court that food

and fluids should not be withheld or withdrawn from depen-

dent persons, at least not without their explicit and informed

refusal to accept them.

Footnote 20 continued

“abuse and neglect” as defined under this type of statute. State v. Serebin, 119

Wis. 2d 837, 859-860, 350 N.W.2d 65, 76 (1984)(nursing home administrator

was properly convicted under Wisconsin statute forbidding abuse or neglect

of nursing home residents on grounds he failed to provide proper nutrition,

which resulted in residents’ serious dehydration and malnutrition).

30

CONCLUSION

Your amici represent families of people with disabilities,

professionals who serve them, and people who themselves have

disabilities. They join with the consensus of those legislatures

and courts who cherish and protect the lives and well-being of

people who are disabled and cannot speak for themselves. They

urge this Court to sustain the judgment of the Missouri

Supreme Court, thereby protecting the life of Ms. Cruzan and

many other similarly vulnerable persons.

Respectfully submitted,

James Bopp, Jr.

Thomas J. Marzen*

Mary M. Nimz

Daniel Avila

Teresa Kealy

The National Legal Center for the

Medically Dependent &

Disabled, Inc.

54 Monument Circle, Suite 825

Indianapolis, Indiana 46204

(317) 632-6245

Counsel for the Ethics and

Advocacy Task Force of the

Nursing Home Action Group

and Medical Issues Task Force

of the United Handicapped

Federation

Stanley S. Herr

510 W. Baltimore Street

Baltimore, Maryland 21201

(301) 328-3295

Counsel for the Association for

Retarded Citizens of the United

States and The Association for

Persons With Severe Handicaps

*Counsel of Record

Attorneys Karen Callahan and Ruth Ann Hanley, along with law

students Henry A. DeJong, Thomas S. Hamilton and Robert J. Henke

assisted in the preparation of this Brief.

Appendix

Appendix A

ARCUS

ARC Resolution on Cessation

of Nutrition and/or Hydration

WHEREAS, debate is currently taking place concerning the

appropriateness of withdrawing food and fluids from some persons labeled

“comatose” or “in a permanent vegetative state” in order to cause death;

and

WHEREAS, persons labeled “comatose” or “in a permanent vegetative

state” may appear to share many characteristics with some persons labeled

“profoundly mentally retarded”; and

WHEREAS, the Supreme Court's !986 Baby Doe decision underscored and

added to the medical vulnerability of certain persons experiencing

significant disabling conditions; and

WHEREAS, purposefully causing death is the ultimate denial of civil and

human rights of persons with mental retardation; and

WHEREAS, purposefully causing death based on assumption of mental

functioning is the ultimate discrimination;

THEREFORE BE ITRESOLVED, that the ARC of the United States opposes

the cessation of nutrition and/or hydration for the purpose of hastening or

causing the death of persons with mental retardation.

Association for Retarded Citizens of the United States

Adopted October 25, 1986

al

Appendix B

TASH

TASH Resolution on

Nutrition and Hydration

WHEREAS, there are an increasing number of decisions supporting the

cessation of nutrition and hydration for individuals who are themselves

unable to consent and have not by valid expression consented to such

procedures;

WHEREAS, The Association for Persons with Severe Handicaps is

committed to the value of all people regardless of severity of disability, and;

THEREFORE BE IT RESOLVED THAT: The Association for Persons with

Severe Handicaps strongly opposes any cessation of nutrition and

hydration for people who are incapacitated and that The Association for

Persons with Severe Handicaps will seek to invoive itself in litigation and

legislation judged to have potential for setting precedents that will affect

the rights of individuals who are incapacitated and at risk of loss of life and

health without provision of hydration, nutrition, and medical treatment;

FURTHER BE IT RESOLVED THAT, The Association for Persons with

Severe Handicaps strongly opposes approaches now advocated by many

which authorizes third parties exercising substitute judgment to decide

“on behalf” of an incapacitated person that the person’s life is no longer

“worth” living and strongly opposes any position that it would be in the

best interests of a person to die rather than to live with a disability.

—Resolution passed at Board Meeting, November 15, 1986.

Appendix C

UHF

United Handicapped

Federation Resolution

The Board of the UNITED HANDICAPPED FEDERATION, a disability rights

coalition of twenty-eight groups with approximately 12,000 members in the State

of Minnesota, approved this Resolution April 10, 1986:

BE IT RESOLVED that the United Handicapped Federation considers full

access to nutrition and hydration, and to ordinary medical treatment,

including antibiotics, whether administered by usual physical means or by

artificial or technological assistance, to be a basic right of al! persons,

regardless of age, whether or not they have disabilities, and whether or not

they are terminally ill.

FURTHER, the United Handicapped Federation recognizes that in some

rare instances of terminal cancer or other severe illness, the provision of

nutrition and fluids can be hurtful due to metabolic problems, even

hastening death, and thus it may be medically and ethically appropriate to

limit medical treatment and/or nutrition and fluids during the terminally

ill patient's final days. (Please refer to Nutritional Therapy in Advanced Cancer,

78 Post GRADUATE MEDICINE 83 (1985)).

MOST IMPORTANT is the proper monitoring of all treatment and care

during severe illness so that treatment and care are appropriately

administered.