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

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## Record

- **Collection:** Supreme Court brief
- **Document type:** Amicus Curiae Brief
- **Published:** January 1, 1990
- **Citation:** 497 U.S. 261

## Text

os

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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I oo cco cet svccccsecccccccecccces 4
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
i Ce I, oc ccc cccccccccucccncsuncntsuse 4
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 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

---

Source: Frix Law Library, https://www.frixlaw.com/law-library/documents/brief%3Amicro_IA40385012_0463%3A36. Public record. Not legal advice.