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

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No. 88-1503 %) {\'s

IN THE _* =

Supreme Court of the United :

October Term, 1989

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

Lester L. and Joyce Cruzan

Petitioners

vs.

DIRECTOR OF MISSOURI DEPARTMENT OF HEALTH,

and ADMINISTRATOR OF THE MISSOURI

REHABILITATION CENTER AT MT. VERNON

Respondents

VS.

THAD C. McCANSE, Guardian ad litem,

Respondent

WRIT OF CERTIORARI TO THE

MISSOURI SUPREME COURT

BRIEF OF BARBARA BURGOON AND

RUTH FIELDS AS

AMICUS CURIAE SUPPORTING PETITIONERS 7

Stephanie M. Edelstein Vicki Gottlich*

Senior Citizens Law Project National Senior Citizens

Legal Aid Bureau Law Center

6811 Kenilworth Avenue 2025 M Street, N.W.

Suite 500 Suite 400

Riverdale, Maryland 20237 Washington, D.C. 20036

(301) 927-6800 (202) 887-5280

*Counsel of Record Leslie Blair Fried

| Legal Aid Bureau

Legal Services for Senior Citizens

12118 Heritage Park Circle

Silver Spring, Maryland 20906

(301) 942-3633

LS

CASILLAS PRESS, INC., 1000 CONNECTICUT AVENUE, N.W., WASHINGTON, D.C. 20036

(i)

QUESTIONS PRESENTED

1. Whether the State should have considered the role of

the family and other factors such as the burden of con-

tinued treatment, medical opinion, and the personal values

and beliefs of the patient in balancing the State’s interest

in life against the right of Nancy Cruzan to determine her

medical treatment;

2. Whether a court appointed guardian has the authority

to make health care decisions on behalf of an incompetent

patient; and

3. Whether a State’s policy as set forth in its living will

statute controls an individual’s constitutional right to

determine treatment.

(iui)

TABLE OF CONTENTS

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ARGUMENT

I. BY FAILING TO CONSIDER THE UNIQUE

ROLE OF THE FAMILY AND OTHER FAC-

TORS SUCH AS THE BURDEN OF CON-

TINUED TREATMENT, MEDICAL OPINION,

AND THE PERSONAL VALUES AND BELIEFS

OF THE PATIENT HERSELF, THE MISSOURI

COURT ERRED IN HOLDING THAT THE IN-

TEREST OF THE STATE IN PRESERVING

ALL LIFE OUTWEIGHED THE RIGHT OF

NANCY CRUZAN AND HER FAMILY TO

DETERMINE HER MEDICAL CARE

A. The Court Should Recognize The Role of The

Family In Decisions Concerning The Termina-

Ne ccc cee sec ccsces 6

B. The Court Incorrectly Determined That The

Administration of Artificial Hydration and Nutn-

tion Is Not Burdensome Treatment to Nancy

Ee i 11

1. The treatment being received is

burdensome to Nancy Cruzan.................... 11

2. Many senior citizens believe that

administration of artificial sustenance

as provided to Nancy Cruzan is burden-

some and unwanted medical treatment............ 12

3. The court’s finding will have an adverse

impact on families of patients in a

persistent vegetative state...................... 14

Il.

Ill.

CONCLUSION

(iv)

C. The Court Failed to Consider Other Relevant

FSO PE EEE OOP OEE OE. gs LN

A COURT APPOINTED GUARDIAN HAS THE

AUTHORITY TO MAKE HEALTH CARE DECI-

SIONS ON BEHALF OF AN INCOMPETENT

A STATE'S POLICY AS SET FORTH IN ITS

LIVING WILL STATUTE DOES NOT CON-

TROL AN INDIVIDUAL’S CONSTITUTIONAL

RIGHT TO DETERMINE TREATMENT..... 20

‘wReeeeeeas ne

aaaevee@eoeoe ee

eeeceoeveveeveevoeaeeoeoeoeaoeve eee ee

rahe 15

(v)

TABLE OF AUTHORITIES

Cases: Page

Brophy v. New England Sinai Hosp.,

398 Mass. 417, 497, N.E. 2d 626 (1986)............ 4, 8, 11, 16

Corbett v. D’Alessandro,

487 So.2d 368 (Fla. App.), rev. den.

Ge I OE OE IIs vn ecvcn x ccccccccvenvcucvevces 6, 21

Cruzan v. Harmon,

760 S.W.2d 408 (Mo. 1988)..... 8, 11, 12, 15, 16, 17, 18, 20, 21

Foody v. Manchester Memorial Hosp.,

40 Conn.Supp. 127, 482 A.2d 713 (1984).................... 16

Gray v. Romeo,

697 F.Supp. 580 (D.R.I. 1988)............... 4, 5, 7, 11, 15, 20

In re Conroy,

98 N.J. 321, 486 A.2d 1209 (1985)....................... 8, 15

In re Drabick,

200 Cal.App.3d 185, 245 Cal. Rptr. 840,

cert. den., U.S. , 109 S.Ct. 399 (1988)...... 5, 8, 19

In re Gardner,

I i ee Baul 6, 21

In re Jobes,

BGS J. 306, SBD A.Dd 436 (1OB7)... wc ccc ccc cece 16, 19

In re Quinlan,

70 N.J. 10, 355 A.2d 646,

eo EF ree 8, 16

In re Westchester County Medical Center,

72 N.Y.2d 517, 534 N.Y.S. 2d 886 (1988)..................... 8

Matter of Guardianship of Hamlin,

102 Wash.2d 810, 689 P.2d 1372 (1984)..................... 19

(vi)

Page

Matter of Spring,

380 Mass. 629, 405 N.E.2d 115 (1980)................... 16, 17

Mohr v. Wilkams,

Ss BE OR eI CEs wv voc cccccncvccccccccsceees re)

Moore v. East Cleveland,

ats re eh cane 8,10

Pratt v. Davis,

Se ey OP is WE IN occa ccc cencescaucesseveees 4,9

Rasmussen v. Fleming

154 Ariz. 207, 741 P.2d 674 (1987)............. 8, 16, 17, 18, 19

Rolater v. Strain,

ee ee Vcc ceeacsdaeevewsevenan 4

Superintendent of Belchertown School v. Satkewtcz,

373 Mass. 728, 370 N.E.2d 417 (1977).............. 5, 7, 16, 19

Thompson v. Oklahoma,

niente, » »' ff eer 20

Wisconsin v. Yoder,

ee eee Bee Pe bes 4, 10

Statutes and Regulations

ee A ee oe are ea heeh oe bs 14

ET MIRE SAO RDO Oe een ROD ae EE A 14

ERG ie Ra ee > pe ee ee tae 14

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D.C. Cate Bam. $ BRNO Glam. BOGRD... 2. ccc cree cccccess 4

ek, a, Oh I oc cchvccceccseucvennativecesen 9

(vii)

Page

ee a ee i ce i ven venececeseuaub ead 9

Ind. Code § 16-18-12-4 (Burns Supp. 1988)..................... 9

La. Rev. Stat. Ann. § 40:1299.53 (1977)...............00.0000ee 9

Me. Rev. Stat. Ann. Tit. 24 § 2905 (Supp. 1988)................ 9

Md. Health-Gen. Code Ann. § 13-708(8) (Supp. 1988)........... 19

Md. Health-Gen. Code Ann. § 5-601 (Supp. 1988)............... 21

Md. Health-Gen. Code Ann. § 20-107 (Supp. 1988)............... 9

Miss. Code Ann. § 41-41-3 (Supp. 1988)..............0..0000... 9

N.Y. Pub. Health Law §2965.59(4)(a) (McKinney

SI ECG sc dUDcea vane Vena ae cab cree eos <ce wear ecesec6s 9

Utah Code Ann. § 78-14-5(4)(1987).... 2.0.2.0... cee cece eee. )

Vt. Stat. Ann. Tit. 12, § 1909(c)(3), (d) (Supp. 1985);............ )

Wash. Rev. Code. Ann. § 7.70.065 (Supp. 1988)................. 9

W.Va. Code § 16-5C-5a (Supp. 1988)...........00..0. 000000000. 9

es ic racnacaecwddiundn> ceiendeeuauuul 14

ee ns co hic casedon decane sscaadedecukbel 14

Miscellaneous

G. Barrow, Aging, The Individual, and Society

ae a a ea 13

Capron, ‘‘Informed Consent in Catastrophic

Disease Treatment and Research,”’

eee PU, GD CIID gg «os co wn voice wee van weencekacave rs)

(vill)

Page

Counsel on Ethical and Judicial Affairs, American

Medical Association, Withholding or Withdrawing

Life-Prolonging Medical Treatment (1986).. ............0.0.... 4

V. Marshall, Last Chapters: A Sociology of Aging

ee saa ee Oreste ouebcw 46.6004 ts.eeeed 13

Medicare Intermediary Manual §§ 3132.2 ..................... 14

Opinion of the Maryland Attorney General,

73 Op. Att. Gen. (1988)

{[Op. No. 88-046 Oct. 17, 1988)]................05.5. 3, 6, 19, 21

President’s Commission for the Study of Ethical

Problems in Medicine and Biomedical and

Behavioral Research, Securing Access to Health Care:

A Report On the Ethical Implications of Differences

in the Availatility of Health Services (1983)................... 17

D. Tomb, Growing Old: A Handbook for You

and Your Aging Parent (1984)... .. 2... cee 13

United States Office of Technology Assessment,

Life-Sustaining Technologies and the Elderly (1987)......... 12, 17

IN THE

Supreme Court of the United States

October Term, 1989

No. 88-1503

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

Lester L. and Joyce Cruzan

Petitioners

VS.

DIRECTOR OF MISSOURI DEPARTMENT OF HEALTH,

and ADMINISTRATOR OF THE MISSOURI

REHABILITATION CENTER AT MT. VERNON

Respondents

vs.

THAD C. McCANSE, Guardian ad litem,

Respondent

- WRIT OF CERTIORARI TO THE

MISSOURI SUPREME COURT

BRIEF OF BARBARA BURGOON AND

RUTH FIELDS AS

AMICUS CURIAE SUPPORTING PETITIONERS

STATEMENT OF INTEREST ©

The parties submitting this brief Amici Curiae in support

of petitioner are residents of Maryland who successfully sought

the withdrawal of artificial nutrition and hydration on behalf

of close family members in persistent vegetative stzies.! Both

‘Letters of consent to the filing of this brief have been obtained from

the parties and filed with the clerk.

2

decisions to withdraw treatment were based upon lifetimes

of knowledge, since neither patient had prepared specific writ-

ten directives in this regard.

Amicus Barbara Burgoon was appointed in June 1988 by the

Circuit Court of Prince George’s County to serve as guar-

dian of the person and property of her mother, Katherine N.

Buker. Mrs. Buker was then eighty-eight years old, diagnos-

ed as being in a persistent vegetative state following a stroke

in 1987, and resided in a nursing home where she received

all of her nutrition and hydration through a nasogastric tube.

Neither Mrs. Buker herself, nor her family, had at any time

consented to the insertion of the nasogastric tube. In fact, Mrs.

Buker had expressly informed hospital staff that she did not

want ‘‘tubes’’. Despite her verbal directives, however, the

tube was inserted and the family obligated to obtain court

authority to remove it.

As guardian, Amicus Burgoon obtained the court's permis-

sion to direct the withdrawal of the nasogastric tube. Amicus

Burgoon’s two siblings and her father, Mrs. Buker’s husband

of sixty-nine years, supported this request. The court found

that her medical condition would not improve and that she

would not have wanted such treatment to continue.

Amicus Ruth Fields’ husband of forty-five years, James Fields,

suffered two strokes and numerous blood clots which caused

paralysis on his right side, required an above-knee amputa-

tion of his right leg and caused his body to revert to the fetal

position. After the second stroke in September 1988, Mr.

Fields’ mental capabilities deteriorated totally, and he was

diagnosed by his physician as being in a persistent vegetative

state. In November 1988, Mr. Fields was unable to swallow

and, with the consent of the family, a gastrostomy tube was

inserted for the provision of hydration and nutrition.

3

Before the deterioration of Mr. Fields’ mental capabilities,

he discussed with his wife his desire to die with dignity.

Although he never prepared a written directive concerning

health care decisions, he verbally expressed his desire not to

be maintained in a vegetative state when there was no poten-

tial for recovery.

In February 1989, Mr. Fields’ physician informed Amicus

Fields and the Fields’ only son that Mr. Fields lacked any

potential for recovery. Consistent with her husband’s previous-

ly expressed wishes, and his physician’s diagnosis and recom-

mendations, Amicus Fields requested the withdrawal of fur-

ther mechanical life-support, including the gastrostomy tube,

from her husband.

The nursing home refused to follow the physician’s orders

absent a court order. Amicus Fields was able to transfer her

husband to another nursing home which agreed to follow physi-

cian’s orders and withdraw the gastrostomy tube without

judicial intervention.

As a direct result of their experiences, both Amicus Burgoon

and Amicus Fields prepared written directives authorizing

designated family members to make medical decisions on their

behalf, including the withholding or withdrawal of artificially

administered sustenance, in the event of mental incapacity

coupled with terminal illness or persistent vegetative state.

In so doing, they relied on a 1988 Opinion of the Maryland

Attorney General, 73 Op. Att. Gen. (1988) [Opp. No. 88-046

(Oct. 17, 1988)],? construing the Maryland living will statute.

The Maryland statute, like that of Missouri, prohibits a direc-

tive to withhold nutrition and hydration. However, the

Maryland Attorney General interpreted the living will law to

be cumulative with common-law and constitutional rights to

2 A copy of the opinion has been filed with the clerk of this Court.

4

refuse such treatment, and determined that a directive speci-

fying that artificial sustenance be withheld was valid and en-

forceable. It is the desire of Amici to prevent their families

and loved ones from experiencing the emotional trauma and

upheaval which they suffered in seeking to carry out the wishes

of their loved ones.

SUMMARY OF ARGUMENT

I. Nancy Cruzan’s right to determine the course of her

medical care was unconstiiutionally abridged when the Missouri

court refused to allow her parents in consultation with her

physicians to withdraw the artificial nutrition and hydration she

was receiving. Her parents’ decision was based on their firm

belief that their daughter would have desired that course of

treatment rather than endure her life in a persistent vegetative

state. Close family members have long been recognized as

surrogate decision makers by the medical profession and by

every court except the Missouri court. Pratt v. Davis, 224

Ill. 300, 79 N.E. 562 (1906). In acknowledging this practice

numerous states have codified the procedure of obtaining

medical consent from family members.

When making medical treatment decisions, families draw

upon life times of shared experiences, values and beliefs and,

in some cases, expressed written or verbal directives. In ad-

dition family members wili have consulted at length with and

obtained opinions from the patient’s physicians. In its failure

to consider these factors in its refusal to authorize the

withdrawal of medical treatment, the Missouri court has in

effect cast aside the deference accorded to family decisions

protected by this Court. Wisconsin v. Yoder, 406 U.S. 205

(1972).

In its determination that a gastrostomy tube was not burden-

some to Nancy Cruzan the Missouri court ignored the findings

5

of the lower court and other courts which have reviewed

similar medical procedures. Gray v. Romeo, 687 F Supp. 580

(D.R.I. 1988); Brophy v. New England Sinai Hosp., 398 Mass,

417, 497 N.E. 2d 626 (1986). In refusing to permit a family

of a patient in a persistent vegetative state to discontinue non-

curative treatment once it has begun, while acknowledging that

consent is necessary to commence such treatment, the court

may encourage loving and involved families to withhold that

initial consent and give up hope prematurely. Numerous senior

citizens, such as the Amici here, do not want their right to

medical self-determination abridged by a court without any con-

sideration of their personal values and other factors such as

the availability and good faith of their families. The Missouri

court failed to consider any such factors in reaching its decision.

II. By denying a court appointed guardian the authority to

refuse medical treatment the Missouri court stands alone.

Some states permit the guardian to exercise the ward’s nghts

to refuse treatment directly, see, e.g., In re Drabick, 245 Cal.

Rptr. 840 (Cal. Ct. App.) cert. den. 109 S.Ct. 399 (1988), and

others require prior court approval, see e.g., Superintendent

of Belchertown State School v. Saikewicz, 373 Mass. 728, 370

N.E. 2d 417 (1977). Family guardians must have the continued

authority to make medical decisions on behalf of their loved

ones, including decisions to withdraw life support, if the ward

is existing in a persistent vegetative state. The incompetent

patient does not lose her right to refuse medica! treatment

because she cannot exercise it freely. The right retains its

meaning only if an agent can exercise it on her behalf. Gray

v. Romeo, 691 F.Supp. at 587.

III. By interpreting Missouri's living will statute as enun-

ciating the State’s policy to preserve life regardless of the

values and interests of the patient, the Missouri court nar-

rows the constitutional and common law rights of adult citizens

to make their medical care decisions. Other jurisdictions, when

faced with the issue of whether a legislature can limit the right

6

to refuse medical treatment by precluding the use of living

will statutes to withhold nutrition and hydration, have found

the statutory restrictions to be cumulative with, and not con-

tradictory to, other inalienable nghts. Jn re Gardner, 534 A.2d

947 (Me. 1987); Corbett v. D'Alessandro, 487 So.2d 368 (Fla.

App.), rev. den. 492 So.2d 1331 (Fla. 1986). In Maryland, par-

ticularly, the Attorney General has opined that although the

living will statute requires the administration of artificial

sustenance, citizens of Maryland retain all of their nghts to

refuse such treatment. 73 Opinions of the Attorney General

___, 19-22, (1988) [Opp. No. 88-046 (Oct. 17, 1988)]. If this

Court sanctions the interpretation of the Missouri court, adult

citizens such as Amici who have carefully planned for future

incapacity face the possibility of losing control of their destiny

as included in their wntten statements or as stated to their

physicians and loved ones.

I. BY FAILING TO CONSIDER THE UNIQUE ROLE

OF THE FAMILY AND OTHER FACTORS SUCH AS

THE BURDEN OF CONTINUED TREATMENT,

MEDICAL OPINION, AND THE PERSONAL

VALUES AND BELIEFS OF THE PATIENT HER-

SELF, THE MISSOURI COURT ERRED IN HOLD-

ING THAT THE INTEREST OF THE STATE IN

PRESERVING ALL LIFE OUTWEIGHED THE

RIGHT OF NANCY CRUZAN AND HER FAMILY

TO DETERMINE HER MEDICAL CARE.

A. The Court Should Recognize The Role of The

Family In Decisions Concerning The Ter-

mination of Health Care.

The case before this Court is not one in which a state, or

an individual, attempts to withhold medical treatment from a

severely disabled individual who has never been able to form

an opinion as to the continuation or withholding of such treat-

7

ment. Nor is it a case where such withholding is sought merely

because an individual is aged and/or frail. Rather, it is a situa-

tion where a concerned and loving family seeks to carry out

its daughter’s directions, in consultation with physicians, when

all possible hope of improvement is exhausted. Your Amici

herein carried out the directions of their loved ones who, like

Nancy Cruzan, were in persistent vegetative states,? and

authorized the withdrawal of artificial nutrition and hydration.

They seek to protect their right to act on behalf of family

members, and to have their designated relatives carry out their

own directions concerning medical treatment.

The right to refuse treatment is not lost when the patient

lacks decision making capacity. ‘“The recognition of that right

must extend to the case of an incompetent, as well as a com-

petent, patient because the value of human dignity extends

to both.”’ Superintendent of Belchertown State School

v.Saikewicz, 373 Mass. 728, 370 N.E.2d 417, 427 (1977)

(Satkewicz). The difficulty arises in determining who should

exercise the right on the patient’s behalf. Every court which

has decided nght to refuse life-sustaining treatment cases, with

the exception of the Missouri court, has found the substituted

judgment doctrine to be the preferred method of determining

*** “PVS is a type of comatose state in which the cerebral functioning

has ceased but in which the brain stem functioning is fully or partially in-

tact. The brain stem controls primitive reflexes, including heart activity,

breathing, the sleep/wake cycle, reflexive activity in upper and lower ex-

tremities, some swallowing motions and eye movements. Marcia shows

signs of each of these activities. The cerebrum, on the other hand, con-

trols sensation and voluntary and conscious activities. Marcia’s cerebrum

has been damaged severely, and as a result she displays no voluntary or

conscious movements, nor does she display any awareness or sensation.

This combination of reflexive activity in the absence of sensation or con-

scious activity is characteristic of PVS. PVS is generally a permanent con-

dition.’ '' Gray v. Romeo, 697 F.Supp. 580, 582 (D.R.I. 1988).

8

the wishes of the incompetent patient.4 See., e.g., In re

Quinlan, 70 N.J. 10, 355 A.2d 646, cert. den., 429 U.S. 922

(1976); Brophy v. New England Sinai Hospital, 398 Mass. 417,

497 N.E.2d 626 (1986). Under this doctrine the surrogate

makes a decision based on what the patient would have chosen

for herself.

The Missouri court rejected the substituted judgment doc-

trine and concluded that the right to refuse treatment cannot

be exercised by a third party on behalf of the patient absent

the most ngid formalities. Cruzan v. Harmon, 760 S.W.2d

408, 425, 426 (Mo. 1988). In so doing the court ignored the

realities of day-to-day medical decisionmaking and the impor-

tance of family members in these matters.®

Doctors have traditionally looked to family members and

other surrogates to give consent for medical treatment when

‘The New York Court of Appeals has specifically rejected the substituted

judgment approach and limited its inquiry to the expressed intent of the

patient. However, in looking to the patient’s expressed intent, it is ac-

tually applying a substituted judgment standard and requiring a greater

degree of proof of the patient’s intentions. Jn re Westchester County Medical

Center, 72 N.Y.2d 517, 534 N.Y.S.2d 886 (1988).

Most courts recognize that in certain instances, when there is no reliable

evidence of the patient’s intent, the substituted judgment standard is in-

applicable. : he surrogate decisionmaker must then apply a ‘‘best in-

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

689 (1987).

‘This Court has recognized that the respect given to the family goes

beyond the nuclear family and includes the extended family. Moore v. East

Cleveland, 431 U.S. 494, 504 (1977). Although Amici are the wife and

daughter of individuals who were in persistent vegetative states, they ask

the court to construe the term ‘‘family’’ broadly in these matters. In some

instances, distant farnily members will be asked to carry out the wishes

of the patient. Jn re Conroy, 98 N.J. 321, 486 A.2d 1209 (1985). In others,

individuals who have had a long-term relationship with the patient but who

are not related to him by blood or marriage are the most able to protect

or articulate the patient’s desires in these matters. Jn re Drabick, 200

Cal.App.3d 185, 245 Cal.Rptr. 840, cert.den., 109 S.Ct. 399 (1988).

9

the patient is incapable of so doing.® The earliest cases involv-

ing consent recognized this practice. See e.g., Pratt v. Davis,

224 Ill.300. 79 N.E.562, 564 (1906); Mohr v. Williams, 95

Minn. 261, 104 N.W. 12 (1905); Rolater v. Strain, 39 Okla.

572, 137 P. 96 (1913). State legislatures have begun to codify

the custom in family consent statutes.? One commentator

noted that the practice is ‘‘so well known in society at large

that any individual who finds the prospect pzrticularly odious

has ample warning to make other arrangements better suited-

to protecting his own ends or interests.’’ Capron, ‘‘Informed

Consent in Catastrophic Disease Treatment and Research,’

123 U.Pa.L.Rev. 340, 424-25 (1974).

Family members, or those associated with the patient in a

close familial relationship, are most likely to know and share

the values of the patient. If the patient has expressed her treat-

ment preferences she would most likely have expressed them

to those with whom she is closest and whom she expects to

carry out her wishes as their last act of love.

Amici herein on behalf of their loved ones based their re-

quests to terminate artificial feeding on their conversations

and discussions concerning the patients’ desires for continued

6A decision to terminate treatment made with the concurrence of the

patient or her family is acceptable ethically to the medical profession to-

day. American Medical Association's Council on Ethical and Judicial Af-

fairs, Withholding or Withdrawing Life-Prolonging Medica! Treatment.

(1986).

"Ark. Stat. Ann. § 20-9-602 (1987); D.C. Code Ann. § 21-2210 (Supp.

1989); Ga. Code Ann. § 31-9-1 (1985); Idaho Code § 39-4303 (1985): Ind.

Code § 16-8-12-4 (Burns Supp. 1988); La. Rev.Stat.Ann. § 40:1299.53

(1977); Me. Rev. Stat. Ann. Tit.24, § 2905 (Supp.1988); Md. Health

General Annotated § 20-107 (Supp. 1988); Miss. Code Ann.\ 41-41-3

(Supp. 1988); N.Y. Pub. Health Law § 2965.59 (4)(a) (McKinney Supp.

1989); Utah Code Ann. \ 78-14-5 (4)(1987); Vt. Stat.Ann. Tit.12

§ 1909(c)(3),(d) (Supp. 1985); Wash. Rev. Code Ann. § 7.70.065 (Supp.

1988); W. Va. Code \ 16-5c-5a (Supp. 1988).

10

treatment under these dire circumstances. Although Mr. Fields

never prepared a written directive concerning health care deci-

sions, he verbally expressed his desire not to be maintained

in a vegetative state if there was no potential for recovery.

Mrs. Buker, who, as the wife of a minister, regularly visited

community members attached to life support systems, voic-

ed her opinions on artificial sustenance over the years. Amici’s

decisions, albeit difficult, were bolstered by lifetimes of shared

experiences, values and beliefs, which supported their under-

standing that their loved one’s expressed treatment prefer-

ences were founded on longstanding and firmly held convic-

tions.

Amici urge this Court to recognize that the interest of the

patient as expressed herself or as represented by her family

as surrogate decisionmakers outweighs any State interests.

The substituted judgment standard best recognizes the per-

sonal autonomy inherent in the nght to be free from unwanted

bodily invasion by giving primary weight to the expressions

of the individual.

This Court has recognized the integrity of the family to

choose its way of life, even when it differs from that chosen

by most citizens. ‘‘A way of life that is odd or even erratic

but interferes with no rights or interests of others is not to

be condemned because it is different.’’ Wisconsin v. Yoder,

406 U.S. 205, 223-224 (1972). The Missouri court, by ignor-

ing the deference accorded the family, has failed to heed the

warning of this Court against ‘‘clos[ing] our eyes to the basic

reasons why certain rights associated with the family have been

accorded shelter under the Fourteenth Amendment’s Due

Process Clause.’’ Moore v. East Cleveland, 431 U.S. 494, 501

(1977). The right of the family to act as surrogate decision-

maker is deserving of such shelter.

1

B. The Court Incorrectly Determined That The

Administration of Artificial Hydration and

Nutrition Is Not Burdensome Treatment to

Nancy Cruzan.

1. The treatment being received is burden-

some to Nancy Cruzan.

The Missouri court balanced the burdens of the treatment

to Nancy Cruzan against the benefits she received, and deter-

mined that the provision of artificial nutrition and hydration

to her was not oppressively burdensome. In doing so the court

failed to consider the values of Nancy and her family. The court

determined that the gastrostomy tube is invasive only at the

time of its insertion. It found that after insertion the tube is

merely a conduit for the liquid food being used to sustain Nan-

cy, and not a treatment. 760 S.W.2d at 422, 423.

In contrast, other courts have found that feeding through

a gastrostomy tube is medical treatment. See, e.g., Gray v.

Romeo, 691 F.Supp. 580, 586, 587 (D.R.I. 1988). The Massa-

chusetts Supreme Court, after descnbing the gastrostomy tube

in detail, determined that the provision of artificial nutrition

and hydration is treatment that ‘*. . .is not only intrusive but

extraordinary.'’’ Brophy v. New England Sinai Hospital, 398

Mass. 417, 497 N.E.2d 626, 630, 631, 637 (1986). In so fin-

ding, the court looked to the total circumstances of Mr.

Brophy’s situation, including the facts that he could not swallow

and could be maintained on the tube for several years. Jd.

The Missouri Court, unlike the Massachusetts court, fail-

ed to understand the implications of a gastrostomy tube. Over

an extended period of time the tube requires care and

maintenance, and may cause adverse side effects. The lower

‘The United States Office of Technology Assessment described the

placement and associated risks of the various tube feeding techniques.

Potential problems arising from a gastrostomy tube include aspiration, skin

irritation around the tube site, and displacement of the tube into the ab-

dominal cavity. Office of Technology Assessment, Life-Sustuining

Technologies and the Elderly (1987).

12

court in Nancy Cruzan’s case found that additional surgery

would be necessary if the tube needed to be repaired or replac-

ed. 760 S.W. 2d at 433 (Higgins, J., dissenting). The possibility

of repeated insertions, coupled with the attachment to tubes

and medica! equipment, make this procedure extraordinary

and continuously burdensome to those whom it is meant to

benefit.

The court also misconstrued Nancy Cruzan’s values when

it determined that the tube was not burdensome to her. It

reasoned that since Nancy Cruzan cannot feel pain or respond

to care, feeding by a tube already in place is not a painful in-

vasion. 760 S.W.2d at 423. Yet it is precisely because Nancy

Cruzan can neither feel pain nor respond to her environment

that the treatment is so burdensome. Nancy Cruzan did not

wish to continue her life if sick or injured unless she could live

‘‘halfway normally.’’ Jd. at 411. The absolute lack of cognitive

awareness, an existence which even the majority concedes

is permanent, /d. at 422, is not living a ‘‘halfway normal”’ life.

The continued use of the gastrostomy tube is unduly burden-

some to Nancy since it maintains her in a condition in which

she did not desire treatment to continue.

2. Many senior citizens believe that adminis-

tration of artificial sustenance as provid-

ed to Nancy Cruzan is burdensome and un-

wanted medical treatment.

Amici, both of whom are senior citizens, want to maintain

control over their medical decisions up until the end of their

lives. They do not want to be supported indefinitely by life-

sustaining equipment if in a medical condition from which they

cannot recover, but would prefer to die a quiet, dignified death.

Their hope is to prevent what happened to their family

members, and what is happening to Nancy Cruzan, from hap-

pening to them.

13

Studies show that many senior citizens are in agreement

with Amici.? Older citizens are more accepting of death than

are younger individuals, and consider death preferable to liv-

ing with progressively deteriorating physical health, its con-

comitant physical discomfort to them and its increased burden

to their loved ones.!° One author notes:

[I]n the minds of some people the real horror is of

living too long, of being kept alive by machines and

intravenous feedings—and being incapacitated,

dependent, impotent, in pain, and unable to com- -

municate. In such a situation, we are not prolong-

ing life, but death. . . . Most people want to have

some say about how their life ends. They don’t want

to hang on indefinitely maintained by machines.'!

Although the Cruzan court views the gastrostomy tube as

merely another way to feed Nancy, Medicare policy recognizes

the difference between tube and other assisted feedings. Tube

feeding is a medical procedure requiring the skills of trained

personnel; assisted feeding is personal care. The federal gov-

ernment recognizes that feeding through a gastrostomy tube

requires more medical supervision than the average activities

of daily life, including help with feeding.!2 Medicare reim-

9In Aging, The Individual, and Society at 328 (4th Ed. St. Paul, 1989),

gerontologist Georgia M. Barrow says, ‘‘Polls show that adults of all ages

support the right to die by refusing treatment.”’

10V. Marshall, Last Chapters: A Sociology of Aging and Dying, at 168-175

(1980).

1D. Tomb, Growing Old: A Handbook For You and Your Aging Parent

§ 303 (1984).

12In order to receive Medicare reimbursement for nursing home care, the

patient must, among other requirements, be receiving ‘‘skilled nursing

services."’ Skilled nursing services are those which require the skills of

qualified technical or professional health personnel and which are provid-

ed under their supervision. 42 U.S.C. §§ 1395d(a)(2), 1395x(h)(Supp. V

1987). Medicare regulations and interpretive guidelines specifically state

that gastrostomy feedings qualify as skilled nursing services. 20 CFR

14

burses an eligible facility for care given to a patient who is

being fed through a gastrostomy tube, but not for assistance

with eating.

Amici as well as other seniomcitizens are concerned about

the impact of the Missouri court’s determination that the

gastrostomy tube is not burdensome to Nancy. The court’s

finding conflicts with their own beliefs and those of countless

other senior citizens that artificial sustenance is a burdensome

medical treatment that they wish to refuse if and when they

are in a persistent vegetative state.

3. The court’s finding will have an adverse

impact on families of patients in a persis-

tent vegetative state.

The implication of the Missouri court’s determination that

the invasion only occurs when the tube is inserted, is that a

patient can only exercise her right to refuse treatment at the

time of the insertion. This is contrary to all understanding of

the nght to refuse treatment. The patient at any time can

change her mind and decide to decline treatment that has

already commenced. Gray v. Romeo, 697 F.Supp. at 588. To

say that the patient, attached to the tube, loses her nght to

seek removal of the tube because, one, it is already inserted,

and two, the substance coming through the tube is not a treat-

ment, deprives the patient of her control over her bodily in-

tegrity. Just as an adult patient is not required to continue

409.33(b)(2), Medicare Intermediary Manual §3132.2. Care which is

primarily custodial in nature and which does not require the skills of qualified

technical or professional personnel, however, is not covered under

Medicare. 42 U.S.C. § 1395y(a)(9).

Assistance with eating is specifically listed in the Medicare regulations

as a personal care service for which there is no reimbursement. 20 CFR

409.33 (d)(11).

15

chemotherapy once treatment had begun, neither should a pa-

tient be required to maintain a gastrostomy tube once it has

been inserted.

The burden of the Missouri court’s reasoning falls most

heavily upon family members of patients in a persistent

vegetative state who are attached to a gastrostomy tube. If

consent is only necessary at the time of insertion, and there

is no right to refuse continued treatment beyond * -at point,

family members could be forced to determ.ie prematurely

whether the patient wouid have wanted this kind of treatment

under the circumstances. Nancy's family consented to the in-

sertion of the tube at a time when they were still hopeful for

her recovery, 760 S.W. 2d at 422, as did the families of Mar-

cia Gray, Paul Brophy, Nancy Jobes, and James Fields. Un-

fortunately, the treatment did not assist in their recovery. If

Amicus Fields and the other families who successfully sought

removal of feeding tubes had known that once they consented

to the treatment they could not discontinue it, they may not

have consented at all. Ironically, the effect of the Missouri

court's ruling may be to discourage loving and involved families

from agreeing to certain kinds of care, and needlessly making

premature decisions. Jn re Conroy, 486 A.2d at 1234; Gray

v. Romeo, 697 F.Supp. at 589, 590, n. 4.

C. The Court Failed to Consider Other Relevant

Factors

Other factors should have been considered in making a

judicial determination whether to allow the withholding of life-

supporting procedures. Jn re Jobes, 108 N.J. 394, 529 A.2d

434(1987); Foody v. Manchester Memonal Hosp., 40 Conn.

Supp. 127, 482 A.2d 713 (1984). Matter of Spring, 380 Mass.

629, 405 N.E.2d 115 (1980). The presence or absence of these

factors may tip the scales used to balance the patient’s interest

16

against the four interests of the state that were enumerated

in Satkewicz.'3 Courts have acknowledged that the state’s

interest, although strong, decreases as the treatment becomes

more intrusive and the prognosis worsens. There is no state

interest sufficient to overcome the nght to withdraw treat-

ment from an individual in a persistent vegetative state from

which there is no cure. Jn re Quinlan, 355 A.2d at 664, 665

(1976); Foody v. Manchester Memonal Hospital, 40 Conn.

Supp. 127, 482 A.2d 713, 718 (1984); Rasmussen v. Flem-

ing, 741 P.2d at 683, 684.

The court in Brophy v. New England Sinai Hospital, found

that the state’s interest in the preservation of life means more

than the preservation of mere corporeal existence. In certain

instances the maintenance of that existence is degrading to

an individual’s humanity. ‘“The duty of the State to preserve

life must encompass a recognition of an individual’s right to

avoid circumstances in which the individual himself would feel

that efforts to sustain life demean or degrade his humanity.’’

497 N.E.2d at 635.

Unfortunately, Nancy Cruzan, Karen Quinlan, Pau! Brophy,

Joseph Gardner, Marcia Gray, Katherine Buker and James

Fields have or had no hope of returning to their previous states

of health, regardless of their medical care. All are or were

in a persistent vegetative state from wiich there is or was

no hope of recovery. The treatment they received, whether

via a respirator or feeding tube, had no curative or even

therapeutic effect upon the underlying condit.ons from which

they suffered or continue to suffer.

'3These four interests are the preservation of life, the prevention of

suicide, the protection of innocent third parties, and the preservation of

medical ethics. 370 N.E.2d at 425, 426. The Cruzan court determined

that only the interest in the preservation of life is implicated in this case.

760 S.W.2d at 419.

17

In rejecting the analysis that the patient’s rights increase

as the prognosis dims, the Missouri court failed to recognize

the distinction between refusing curative treatment and refus-

ing treatment that at best maintains but does not treat or cure.

760 S.W.2d at 421, 422. To reach an outcome it finds desir-

able, the court arbitrarily discounts Nancy’s ‘‘side of the equa-

tion,’’ and the nghts of those who would choose to die a natural

death. Jd. at 421. As a result, Nancy is maintained in a condi-

tion which she finds unacceptable, and which intrudes on her

right to self-determination. é

Another factor which should have been considered was the

availability and good faith of the patient’s family. This case

and those of Amici must be distinguished from cases in which

the patient has no caring and devoted family or fnend to act

on her behalf. See, e.g., Rasmussen v. Fleming. If no family

is available, or if the family is not well-meaning, the state has

a greater interest in protecting the patient under its parens

patriae power, to insure that the individual’s nights are not

abused. Matter of Spnng, 405 N.E.2d at 121.

In balancing these factors against the state’s interests,

courts should not consider the age of the patient.'4 All adults,

regardless of age, retain the nght to refuse or consent to health

care. Younger people who would reject life sustaining treat-

ment if in a persistent vegetative state should not have a

greater burden to overcome because of their youth. Similar-

‘United States Office of Technology Assessment, Life-Sustaining

Technologies and the Elderly (1987). The Advisory Panel to this project

included as one of its principles that decisions regarding the use of life-

sustaining treatments must be made on an individual basis and should never

be based on chronological age alone. Jd. at 23. See, also, President's Com-

mission for the Study of Ethical Problems in Medicine and Biomedical and

Behavioral Research, Securing Access to Health Care: A Report on the

Ethical Implications of Differences in the Availability of Health Services

(1983).

18

ly, older persons who would choose treatment in the same

circumstances should not have treatment terminated because

of their age.

Il. A COURT APPOINTED GUARDIAN HAS THE

AUTHORITY TO MAKE HEALTH CARE DE-

CISIONS ON BEHALF OF AN INCOMPETENT

PATIENT.

Nancy Cruzan’s parents were appointed her co-guardians,

and in that capacity made their request to order the withdrawal

of Nancy’s gastrostomy tube. The Missouri court found no

statutory authority to allow them to terminate or refuse treat-

ment, but instead found that the statute only provides the guar-

dian with power to assure the provision of and consent to

medical care. The court further found that, because the co-

guardians’ power derives from the state, they cannot assert

their daughter’s right to refuse treatment. 760 S.W.2d at 424,

425. Amici are concerned that the Missouri construction could

limit their authority to act for family members or to have their

designated agents act on their behalf.

Other states which base the authority of the guardian on

the state’s parens patriae power allow the guardian to assert

the right of the incompetent to refuse treatment, and have

defined the authority to consent to treatment more broadly

than the Missouri court. Rasmussen v. Fleming held that the

guardian’s authority under Arizona’s statute to consent to

medical care included the right to refuse treatment, ‘‘[t]o hold

otherwise would...ignore the fact that oftentimes a patient's

interests are best served when medical treatment is withheld

or withdrawn.’’ 741 P.2d at 688. Rasmussen relied on Matter

of Guardianship of Hamlin, 102 Wash.2d 810, 689 P.2d 1372

(1984), in which the guardian sought to terminate life support.

The Washington statute was similar to the Missouri statute

in expressly requiring the guardian to care for the ward, act

19

in the ward’s best interests, and provide consent for medical

treatment. Nevertheless, Hamlin concluded that in some

cases refusal of medical treatment would be in the ward’s best

interests, and held that, under the statute, the guardian could

consent to the termination of life-support. Jd. at 1375. See,

also, In re Drabick, 245 Cal.Rptr. 840 (Cal.Ct.App.), cert.den.

109 S.Ct. 399 (1988).

All jurisdictions other than Missouri recognize a guardian's

authority to refuse treatment, merely differing as to whether

the court or its designee will act in the capacity of guardian.

Some states, in acknowledging the authority of the guardian

to exercise the ward’s nght to refuse treatment, allow the

guardian to assert that right without first seeking court ap-

proval. Arizona, California and New Jersey see the judicial pro-

cess as being unduly burdensome, and find no need for judicial

intervention absent conflict among the parties. Rasmussen,

741 P.2d at 691; In re Drabick, 245 Cal.Rptr. at 844, 845;

In re Jobes, 108 N.J. at 423. Other states require that authority

to exercise the right be granted the guardian by the court.

Amicus Burgoon as guardian sought court approval for removal

of her mother’s feeding tube because under Maryland law,

the court must authorize any medical procedure that involves

a substantial risk to the ward’s life. Md. Estates And Trusts

Code Ann. § 13-708(8) (Supp. 1988 ).15 See also, Satkewicz,

370 N.E.2d at 434-435.

Amicus Burgoon is especially concerned that a guardian be

able to exercise the right to refuse or withdraw unwanted

treatment. The feeding tube which she sought to remove from

her mother had been inserted without the consent of her

'SThe Maryland Attorney General confirms the need for court authoriza-

tion of a request by a guardian to terminate life-supporting equipment.

73 Opinions of the Attorney General,—(1988) [No. 88-046] (Oct. 17,

1988)].

20

mother or any family member. If she, as guardian, could not

request the removal of the unauthorized tube, then no one

would have been able to correct the initial violation of her

mother’s right to be protected from unconsented to treatment.

Courts have recognized that the rights of individuals who have

suffered a loss of brain function are only meaningful if exer-

cised by agents acting on behalf of principals. See Gray v.

Romeo, 691 F.Supp. at 587 (quoting Thompson v. Oklahoma,

___ U.S. ___., 108 Ct. 2687, 2693 n. 23 (1988) (plurality

opinion)).

Amici want to ensure that if placed under a guardianship in

future years, their guardians will be able to make all medical

decisions on their behalf, including a decision to withdraw life-

support if they are in a persistent vegetative state.

Ili. A STATE’S POLICY AS SET FORTH IN ITS LIV-

ING WILL STATUTE DOES NOT CONTROL AN IN-

DIVIDUAL’S CONSTITUTIONAL RIGHT TO

DETERMINE TREATMENT

he Missouri court acknowledged that the state’s living will

statute is not applicable to Nancy Cruzan, since she never ex-

ecuted such a document. 760 S.W.2d at 420. Nevertheless,

it used the public policy enunciated in the living will legislation

to limit Nancy Cruzan’s constitutionally protected rights. It

interpreted the policy as requiring the unqualified preserva-

tion of life, and the protection of the lives of similarly situated

citizens who lacked the support of a caring family like the

Cruzans. Because it found the declared legislative policy to

be so strong, the court found that it outweighed any of Nancy

Cruzan’s interests. The court concluded that any change in

policy to weaken the State’s interest must come from the

legislature and not the courts. Jd., at 426.

Other jurisdictions whose living will statutes preclude the

21

termination of nutrition and hydration have determined that

the statutes did not limit the constitutional and common law

rights of individuals who had not executed living wills. Corbett

v. D'Alessandro, 487 So.2d 368 (Fla. App.), rev.den. 492 So.2d

1331 (Fla. 1986) (statute does not affect constitutional nght

of patient in persistent vegetative state to forego artificial

sustenance); In re Gardner, 534 A.2d 947 (Me. 1987) (statute

did not limit common law right of patient in permanent

vegetative state to forego artificial sustenance).

The Maryland Attorney General recently construed the

Maryland living will statute, Md. Health General Code Ann.

section 5-60 et. seq. (Supp. 1988), to be cumulative with other

rights concerning life-sustaining equipment. 73 Opinions of the

Attorney General, 19-22 (1988) [Opp 88-046 (Oct. 17, 1988)].

Despite the specific statutory language precluding the

withholding of artificial sustenance, the Attorney General con-

cluded that an individual, in a living will or through other means,

can still request that such treatment not be provided. The At-

torney General determined that an interpretation of the statute

to require the administration of artificial sustenance to an in-

dividual who expressly rejected such treatment, or to give less

decision-making authority to competent adults who execute

living wills than to those who use other means of expressing

their preferences'®, would not survive a constitutional chal-

lenge. Id. at 20-23.

The construction of living will statutes is of the utmost im-

portance to Amici. They urge this Court, if it must decide the

issue, to find the Missouri statute to be cumulative with, and

'6The opinion also authorizes the use of durable powers of attorney for

health care, Jd. at 23-24; and surrogate decision-making by family members

and attending physicians if the patient is terminally ill, Jd. at 35-38. Com-

petent adults do not need to use formally executed documents such as

powers of 2ttorney and living wills, but may simply tell their attending physi-

cians of their decisions. /d. at 24-25.

22

not in derogation of, the constitutional nght to refuse treat-

ment. Because the Maryland’s courts have not yet ruled on

the issue, Maryland residents rely on their state’s Attorney

General’s opinion as authority for their written directions to

withhold or terminate artificial sustenance. The Missouri

court’s interpretation that the policy stated in its living will

statute limits the constitutional nght to refuse treatment,

negates Amici’s nght to exercise and voice their treatment

choice. If this Court sanctions the interpretation adopted by

the Cruzan majority limiting their constitutional rights, Amici

face the possibility of the Maryland courts adopting a similar

policy, rather than the interpretation of the state Attorney

General. Their right to refuse medical treatment that is in-

vasive to their persons and contrary to their personal beliefs

would be severely curtailed.

23

IV. CONCLUSION

For all of the’reasons outlined above, Amici Cunae Burgoon

and Fields urge this Court to reverse the decision of the

Missouri Supreme Court.

Respectfully submitted,

Vicki Gottlich*

National Senior Citizens

Law Center

2025 M Street, N.W.,

Suite 400

Washington, D.C. 20036

(202) 887-5280

Leslie Blair Fned

Legal Aid Bureau

Legal Services for Semor Citizens

12118 Heritage Park Circle

Silver Spring, MD 20906

(301) 942-3633

Stephanie M. Edelstein

Legal Aid Bureau

Senior Citizens Law Project

6811 Kenilworth Avenue

Suite 500

(301) 927-6800

Attorneys for Amicus Cunae

Dated: Washington, D.C.

September 1, 1989

*Counsel of Record