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

No. 88-1503 SEP 1 1969

a pea JR.

CLERK

IN THE

Supreme Court of the United States

OCTOBER TERM, 1989

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

LESTER L. and JOYCE CRUZAN,

. Petitioners,

ROBERT HARMON, Director of Missouri Department

of Health, and DONALD LAMKINS, Administrator of the

Missouri Rehabilitation Center at Mt. Vernon,

. Respondents, ;

THAD C. McCANSE, Guardian ad litem,

-_ Respondent.

On Writ of Certiorari to the Missouri Supreme Court

BRIEF OF AMICUS CURIAE

THE NATIONAL HOSPICE ORGANIZATION

IN SUPPORT OF PETITIONERS

BARBARA F’.. MISHKIN

WALTER A. SMITH, JR.*

ANN MORGAN VICKERY

HOGAN & HARTSON

555 13th Street, N.W.

Washington, D.C. 20004

(202) 687-5728

Counsel for Amicus Curiae

* Counsel of Record National Hospice Organization

WILSON - EPes PRINTING Co.. INC. - 789-0096 - WASHINGTON, D.C. 20001

QUESTIONS PRESENTED

1. Whether the Constitution protects a dying person’s

decision to refuse unwanted medical intervention.

2. Whether a dying person’s decision to refuse such

intervention is vitiated by the person’s subsequent in-

capacity.

3. Whether a State’s asserted interest in forcing the

continuation of life in all circumstances overcomes a

dying person’s right to refuse unwanted medical inter-

vention.

(i)

TABLE OF CONTENTS

Page

QUESTIONS PRESENTED. .0000...2.0.........ccccccccceseeeeeeeeeees i

TA I ED cic ccctnnccnsncccecnccencesececcses iv

STATEMENT OF INTEREST OF AMICUS

EEE IC es YOR Ne eS ne RES meee 1

RPE, GOU DTTREIIO cececitcccccccsccccensccseeessesctonses 3

ARTES AS ee 6

1. DYING INDIVIDUALS HAVE A FUNDA-

MENTAL RIGHT TO MAKE CHOICES

ABOUT THEIR MEDICAL CARE ...._............. 6

Il. THE RIGHTS OF DYING INDIVIDUALS

ARE NOT EXTINGUISHED BY THEIR IN-

STII sccoshcnininsnccesinsaiinatnigeettseundaiiisrinnadineniineines 13

Ill. THE STATE HAS NO INTEREST SUFFI-

CIENT TO OVERRIDE THE TREATMENT

CHOICES OF DYING INDIVIDUALS ............ 15

SFI cccvsecescecsssescsvasesreeree sdeeaaobaiitliclicpbaiineteaihtthiasinidaspiiee 18

(iii)

iv

TABLE OF AUTHORITIES

CASES: Page

Addington v. Texas, 441 U.S. 418 (1979) -.............. 8

Bartling v. Glendale Adventist Medical Ctr., 209

Cal. Rptr. 220 (Cal. Ct. App. 1984) —..........0...... 10

Brophy v. New England Sinai Hosp., 497 N.E.2d

EERIE AR oe ie oe NER passim

Canterbury v. Spence, 464 F.2d 772 (D.C. Cir.),

cert. denied, 409 U.S. 1064 (1972) ....020 0... 6

Cobbs v. Grant, 502 P.2d 1 (Cal. 1972) ......000000.... 6

Eichner v. Dillon, 426 N.Y.S.2d 517 (N.Y. App.

Div. 1980), mod. and consolidated sub nom. In

re Storar, 420 N.E.2d 64 (N.Y.), cert. denied,

SE NS A ae a 13

Eisenstadt v. Baird, 405 U.S. 488 (1972) ............... 7,16

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

In re Gardner, 5384 A.2d 947 (Me. 1987) ........ 9,10, 11,17

In re Osborne, 294 A.2d 372 (D.C. 1972) —.......00.... 16

In re Prange, 527 N.E.2d 308 (Ill.), cert. denied,

a a ee I ici iitcietectsnctiiliticitittictincttnitnss 17

In re Quinlan, 355 A.2d 647 (N.J.), cert. denied, -

429 U.S. 922 (1976), overruled in part, In re

Conroy, 486 A.2d 1209 (N.J. 1985) -...0.2000 4,7

In re Torres, 357 N.W.2d 332 (Minn. 1984) .......... 11

John F. Kennedy Memorial Hosp. v. Bludworth,

Ge Ie I Py I deetecttcccnadccescettgieserscccsiccees 18

Leach v. Shapiro, 469 N.E.2d 1047 (Ohio Ct. App.

REE EE Sa TE Soa Ne ke 14, 15

Mills v. Rogers, 457 U.S. 291 (1982)............00002.... 8

Natanson v. Kline, 350 P.2d 1093 (Kan.), clarified,

354 P.2d 670 (Kan. 1960) ......... aaa 6

Olmstead v. United States, 277 U.S. 438 ( 1928) .. 9

Rasmussen v. Fleming, 741 P.2d 674 (Ariz. 1987 ). 7,9

Rochin v. California, 342 U.S. 165 (1952) .............. 8

Schloendorff v. Society of New York Hosp., 105

i isenns 6

Superintendent of Belchertown State School v.

Saikewicz, 370 N.E.2d 417 (Mass. 1977).............. 8,9, 13

Thornburgh v. American Coll. of Obstetricians &

Gynecologists, 476 U.S. 747 (1986)...................... 9

Vv

TABLE OF AUTHORITIES—Continued

Page

Tune v. Walter Reed Army Medical Hosp., 602 F.

I, Te Gs I cicciccctcccrccctcnccctccesescomace 7,9

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

STATUTES:

STE EE passim

Mo. Rev. Stat. §§ 459.010-.055 (1985) 00... passim

LEGISLATIVE MATERIALS:

A Matter Of Choice: Planning Ahead For Health

Care Decisions, Senate Special Comm. on Aging,

S. Rep. No. 211, 99th Cong., 2d Sess. (1986) ....3, 11, 14

~ Dying With Dignity: Difficult Times, Difficult

Choices: Hearing Before the Select Comm. on

Aging, 99th Cong., Ist Sess. (Comm. print

a a lehiininilenied See 3,11

OTHER AUTHORITIES:

Andrews, “Informed Consent Statutes and the De-

cisionmaking Process,” 5(2) J. Legal Med. 163

READE Ri VERE: Kira SENSO es ec 14, 15

The Appleton Consensus: Suggested International

Guidelines for Decisions to Forego Medical

Treatment (1988), reprinted in J. of Danish

eth a 17

Buschman, “Psychosocial Issues in the Care of the

Terminally Ill” in J. Zimmerman, Hospice: Com-

plete Care for the Terminally Ill (2d ed. 1986)... 4, 12

C. Fried, Right and Wrong (1978) ...... Sa ae 9

Council on Ethical and Judicial Affairs, American

Med. Assoc., Current Opinions (1986) ................ 16, 17

Rodin, “Aging and Health: Effects on the Sense of

Control,” 233 Science 1271 (Sept. 19, 1986)...... 11

Viner, “Life at the Other End of the Endotracheal

Tube: A Physician’s View of Critical Illness,” 2

Prog. Crit. Care Med. 3 (19885) ...............000.000....... 1l

vi

TABLE OF AUTHORITIES—Continued

Weisman, “Psychosocial Considerations in Ter-

minal Care,” in Schoeberg, Carr, Peretz and

Kutscher (eds.), Psychosocial Aspects of Ter-

Se ee csi

J. Zimmerman, Hospice: Complete Care for the

Terminally Ill (2d ed. 1986) —..2..-22 eee.

Page

12

4,11

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,

ROBERT HARMON, Director of Missouri Department

of Health, and DONALD LAMKINS, Administrator of the

Missouri Rehabilitation Center at Mt. Vernon,

; Respondents,

THAD C. McCANSE, Guardian ad litem,

Respondent.

On Writ of Certiorari to the Missouri Supreme Court

BRIEF OF AMICUS CURIAE

THE NATIONAL HOSPICE ORGANIZATION

IN SUPPORT OF PETITIONERS

STATEMENT OF INTEREST OF AMICUS CURIAE

The National Hospice Organization (“NHO”) is a non-

profit, tax-exempt entity dedicated to improving the care

of terminally ill Americans. The NHO was established

eleven years ago and currently represents over 1,000

hospices across the country and an additional 2,000 in-

dividual members.

2

Since the first hospice in this country began caring for

patients in 1974, more than 1,600 hospice programs have

developed around the nation. A hospice program is a co-

ordinated program of palliative and supportive services,

including medical, psychological, social, and spiritual care

for dying persons and their families. These services are

provided by a medically directed interdisciplinary team

of physicians, nurses, specialized therapists, social work-

ers, and volunteers, and are provided both in the home

and in inpatient settings.

The hospice philosophy recognizes dying as part of the

normal process of living and focuses on enhancing the

quality of remaining life. Hospice affirms life and seeks

“neither to hasten nor to postpone death. It also affirms

the right of those who are dying to make as many choices

as possible for themselves—both in living what is left of

life and in dealing with fatal illness. An important com-

ponent of hospice care, therefore, is enhancing the ability

of patients to control their lives for as long as possible,

even in the terminal phase of their illness.

Choosing hospice is a decision made by increasing num-

bers of dying patients. Other patients make different

choices. In 1987, more than 188,000 terminally ill Ameri-

cans were served by hospice programs. We estimate that

more than one-third of Americans dying of cancer in

1987 and nearly forty percent of those who died of AIDS

in that year were hospice patients. Moreover, hospices

have cared for many patients who have chosen to forego

artificial nourishment and who find in hospice maximal

support for that choice and attentive care. Because we

know from years of hospice experience that such a choice

can bring comfort, not pain, to those who make it, and

because it is a medically sound choice, we strongly endorse

the right of the dying to make it.

It is this right of free choice that NHO seeks to pre-

serve, together with the right to expect that a choice made

by a competent individual will be honored, even if that

individual later becomes unable to express the choice in

terms of a specific treatment decision. NHO is concerned

that the Missouri Supreme Court’s decision, if affirmed

by this Court, would severely limit important choices

made by dying patients, particularly those no longer

capable of insisting that their choices be honored. For

that reason, we file this brief amicus curiae.’

SUMMARY OF ARGUMENT

As the Bible teaches, the road which opens with birth

leads to the grave. Birth and death are the most

singular events we experience and, therefore, the con-

templation of death as of birth should be a thing of

beauty and not of ignobility.?

Such was the testimony of Jacob Javits at a Congres-

sional hearing, shortly before his death. Not everyone has

spoken on this subject as eloquently, but many have come

to appreciate the importance of communicating their

thoughts on such matters. Accordingly, most States—in-

cluding Missouri—have enacted laws validating advance

directives for health care (such as living wills and dur-

able powers of attorney) .*

Maintaining control over the manner of one’s dying is

a fundamental aspect of personal liberty. For dying is by

definition a personal matter; it may be painful or peace-

ful, humiliating or liberating, depending on how each

1 This brief is filed with the consent of the parties. Copies of

the consent letters are on file with the Clerk.

2 Dying With Dignity: Difficult Times, Difficult Choices: Hear-

ing Before the House Select Committee on Aging, 99th Cong., Ist

Sess. (Comm. print 1985) at 5-6 (testimony of former Senator

Jacob Javits). When he testified, Senator Javits was terminally

ill—and totally paralyzed from the neck down—a condition which,

as he observed, “concentrates the mind on this subject.” I/d.

3 See, e.g., A Matter of Choice: Planning Ahead for Health

Care Decisions, Senate Special Comm. on Aging, S. Rep. No. 211,

99th Cong., 2d Sess. (1986).

4

individual experiences the process. Indeed, controlling

the process is often the last possible expression of one’s

individuality; and maintaining control over that indi-

viduality and over what is done to them during a vermi-

nal illness is for many patients a crucial part of hospice

care. Wher patients lose that control, they lose their

dignity, their bodily integrity, and their sense of self.‘

Deciding to forego aggressive treatment when there is

no hope of recovery is for some an affirmation of self and

of control. It is for them an acceptance of the inevitable.

For nearly fifteen years, state and federal courts across

the country consistently have concluded that the Constitu-

tion protects such choices by the dying and guards them

from the State’s insistence that they accept life-sustaining

treatments they do not want. The first such case, that of

Karen Ann Quinlan,’ has been followed by many others,

all endorsing this basic principle. This Court’s own prior

decisions likewise confirm the right of persons to be free

from State intrusion upon their bodies and their beliefs,

particularly when fundamental, personal decisions are at

issue. The Court should confirm in this case that the

choice of the dying to refuse unwanted treatment is such

a fundamental, personal decision and that it is constitu-

tionally protected.

Coutrary to the implications of the Missouri Supreme

Court’s decision, this fundamental, personal choice should

not be ignored—nor can it be considered vitiated—simply

because a dying person has become incapacitated. Even

though incapacitated, dying persons are still persons, and

* See, e.g., Buschman, “Psychosocial Issues in the Care of the

Terminally Ill” in J. Zimmerman, Hospice: Complete Care for the

Terminally Ill, (2d ed. 1986) at 77.

5In re Quinlan, 335 A.2d 647 (N.J.), cert. denied, 429 U.S. 922

(1976), overruled in part, In re Conroy, 486 A.2d 1209. (NJ.

1985). '

6 See, e.g., Brophy v. New England Sinai Hosp., 497 N.E.2d 626

(Mass. 1986) aad cases cited therein.

5

they stili possess their basic constitutional rights. When

their choice regarding the acceptance or nonacceptance of

prolonged life-sustaining treatment is known, it should be

honored. ;

Describing Cruzan as a case in which » “third party

seeks to cause the death of an incompetent,”* or in which

the issue is whether guardians may “choose the death of

their ward,’® or in which “we are asked to allow the

medical profession to make Nancy die,”® inflames but

does not inform. Moreover, it distorts—if it does not

ignore altogether—the true human interests at stake.

Neither Nancy Cruzan nor her parents chose the accident

that left her incapable of rudimentary bodily functions *

and forever incapable of cognitive life,’ just as no one

ever chooses terminal illness. It is not that her parents

wish Nancy dead; it is that they do not want her death

to be held in abeyance in a manner they know (and the

trial court found) is inconsistent with Nancy’s clearly

expressed wishes.’*

The Missouri Supreme Court’s claim that the State has

an overriding interest in insisting that dying people ac-

cept unwanted, unremitting life-sustaining treatment—

even where there is no hope of recovery—should not be

7 Appendix to Petition for V’rit of Certiorari (“Pet. App.”) at

A4l.

8 Id. at Ad4.

® Jd. at A9.

10 She has “no cognitive cr reflective ability to swallow food or

water to maintain her daily essential needs.” Jd. at A8.

11 She is “oblivious to her environment except for reflex responses

to sound and perhaps painful stimuli” due to “cerebral cortical

atrophy [which) is irreversible, permanent, progressive and on-

going.” Id. at AT.

12 The trial court found as fact that Nancy “would not wish to

continue w’cth nourishment and hydration” under the_circumstances

here presented. Jd. at A8

6

accepted by this Court. The State has a valid interest in

protecting life, but that interest does not warrant un-

wanted intrusion upon the dying.

Furthermore, neither the State fegislature nor the, Mis-

souri Supreme Court has explained why the State’s con-

cern with protecting life requires forcing substances into

dying bodies through feeding tubes, while not requiring

forcing oxygen into those bodies through ventilators. Yet

the State permits the latter to be refused, but not the

former. Because there is no justification for this dis-

similar treatment (i.e., between patients whose nourish-

ment is provided mechanically and those whose respira-

tion or kidney function are provided mechanically), the

State’s action in this case not only subverts fundamentai ~

constitutional liberties, it also violates the Equal Protec-

tion Clause of the Fourteenth Amendment.

ARGUMENT

{. DYING INDIVIDUALS HAVE A FUNDAMENTAL

RIGHT TO MAKE CHOICES ABOUT THEIR MEDI-

CAL CARE

The right of individuals to decide what medical proce-

dures (if any) may be performed on them was first

enunciated in 1914."* This fundamental right is imple-

mented through the process of informed consent, which

provides an opportunity for an informed patient to decide

whether or not to accept the proffered therapy,’ based

upon personal values and goals, religious and moral be-

13 Schloendorff v. Society of New York Hosp., 105 N.E. 92, 93

(N.Y. 1914) (“Every human being of adult years and sound mind

has a right to determine what shall be done with his body and

cannot be subjected to medical treatment without his consent’).

14 See generally Canterbury v. Spence, 464 F.2d 772, 780 (D.C.

Cir.), cert. denied, 409 U.S. 1064 (1972); Cobbs v. Grant, 502 P.2d

1 (Cal. 1972). See also Natanson v. Kline, 250 P.2d 1093 (Kan.),

clarified, 354 P.2d 670 (Kan. 1960).

7

liefs, and an individualized weighing of burdens and

benefits. Accordingly, the right to consent necessarily

_ includes the corollary right to refuse medical treatment; **

and the right to refuse is not limited to any particular

kind of treatment or circumstances.

[I]t is now a well-established rule of general law

... that it is the patient, not the physician, who

ultimately decides if treatment—any treatment—is

to be given at all .... The rule has never been

qualified in its application by either the nature or

purpose of the treatment, or the gravity of the con-

sequences of acceding to or foregoing it.’®

Moreover, consent is a continuing process and the patient

always has the right to withdraw consent previously

given.*’

In 1976, these well accepted principles became the

cornerstone of the Quinlan decision, in which the Supreme

Court of New Jersey ruled that the right of privacy in-

cludes the right to refuse life-sustaining medical treat-

ment.'® Quinlan reflected in part this Court’s affirmation

that the United States Constitution protects personal

medical decisions such as the use of contraception.’

This Court has since ruled that prisoners and mental

15 See, e.g., Rasmussen v. Fleming, 741 P.2d 674, 683 (Ariz. 1987)

(en banc).

16 Tune v. Walter Reed Army Medical Hosp., 602 F. Supp. 1452,

1455 (D.D.C. 1985) (citations omitted).

17 Brophy, 497 N.E.2d at 638 and cases cited therein. See also

Tune, 602 F. Supp. at 1456 (“competent adult patients . . . with

termina! illnesses and in the circumstances presented here have a

right to determine for themselves whether to allow their lives to be

prolonged by artificial means, including the right to demand the

cessation of life support once begun’) (emphasis added).

18 In re Quinlan, 355 A.2d 647 (N.J.), cert. denied, 429 U.S. 922

(1976), overruled in part, In re Conroy, 486 A.2d 1209 (N.J. 1985).

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

Baird, 405 U.S. 488 (1972).

8

patients have constitutionally protected liberty interests

that are implicated by the administration of drugs

against their will;*° and that even a small incision to

remove a bullet from a criminal suspect “implicates ex-

pectations of privacy and security of such magnitude that

the intrusion may be ‘unreasonable’ even if likely to pro-

duce evidence of a crime.” **

The Court now addresses, for the first time, the extent

to which the Constitution affords dying individuals a

right against unwanted invasion of bodily integrity. We

believe that interest is at least as strong as the other

circumstances in which the Court has already confirmed

aright to be free from State intrusion upon fundamental

human decisions. Surely the right to control the manner

of one’s dying deserves as much protection under our Con-

stitution as the right to control conception; and if brief

insertion of a tube to remove stomach contents offends,”

so much more does the permanent insertion of a tube to

force substances into the stomach of an unwilling, dying

individual.

Courts throughout the States uniformly have invoked

federal constitutional rights in affirming a patient’s right

to refuse life-prolonging treatment. Until Cruzan v. Har-

mon, courts consistently—and correctly—have held that

to deny patients freedom of choice concerning health care

would be to infringe their constitutional rights:

The constitutional right to privacy, as we conceive it,

is an expression of the sanctity of individual free

choice and self-determination as fundamental con-

stituents of life. The value of life so perceived is

lessened not by a decision to refuse treatment, but

20 Mills v. Rogers, 457 U.S. 291 (1982); Addington v. Tezas, 441

U.S. 418 (1979).

21 Winston v. Lee, 470 U.S. 753, 754 (1985).

22 Rochin v. California, 342 U.S. 165 (1952).

9

by the failure to allow a competent human being the

right of choice.”

The Cruzan court overlooked this crucial fact, i.e., that

the right to privacy embodies more than mere control

over painful bodily intrusions. It extends as well to one’s

sense of self and one’s emotional well-being. These are

primary concerns of many who are dying—persons who

wish to be remembered other than as a senseless organism

with tubes delivering and removing various substances

through bodily orifices.

In his well-known description of the right to privacy,

Justice Brandeis reminds us that the makers of our Con-

stitution “recognized the significance of man’s spiritual

nature, of his feelings and of his intellect. They knew

that only a part of the pain, pleasure and satisfactions of

life are to be found in material things.” ** As former

Solicitor General Charles Fried has written:

What a person is, what he wants, the determination

of his life plan, of his concept of the good, are the

most intimate expressions of self-determination, and

by asserting a person’s responsibility for the results

of this self-determination we give substance to the

concept of liberty.”

A patient’s privacy may be invaded, and his liberty

violated, even without the administration of highly in-

trusive procedures and without any experience of physical

pain. It is enough that something is done that the patient

23 Tune v. Walter Reed Army Medical Hosp., 602 F. Supp. at 1456,

quoting Superintendent of Belchertown State School v. Saikewicz,

370 N.E.2d 417, 425-426 (Mass. 1977); accord Brophy, 497 N.E.2d

at 633; Rasmussen, 741 P.2d at 681-682; In re Gardner, 534 A.2d

947, 955 (Me. 1987).

24 Olmstead v. United States, 277 U.S. 438, 478 (1928) (Brandeis,

J. dissenting).

25C. Fried, Right and Wrong, at 146-147 (1978), quoted with

approval in Thornburgh v. American Coll. of Obstetricians & Gyne-

cologists, 476 U.S. 747, 777 n.5 (1986) (Stevens, J. concurring).

10

does not want. It is enough that the intimate aspects of

one’s being are exposed to others through unwanted proce-

dures. Often, what dying patients fear most is continued

existence under conditions that are humiliating even to

contemplate; and it is the indignity and loss of control,

rather than physical pain, that the patient hopes most fer-

vently to avoid. William Bartling, for example, described

the “degrading and dehumanizing” impact of receiving

unwanted life support and gave the following reasons for

petitioning a California court for the right to have a

respirator removed:

I am totally unable to care for myself and believe

that I am dependent on a mechanical ventilator to

support and sustain my respiration and life. I con-

tinuously suffer agonizing discomfort, pain and the

humiliating indignity of having to have my every

bodily need and function tended to by others. I do

not wish to continue to live under these conditions.”

Such concerns are equally valid when expressed pros-

pectively, in anticipation of the degradation. In 1987,

the Supreme Court of Maine authorized removal of xaso-

gastric feeding tubes from a patient who previously had

made clear his intent never to be dependent upon such

equipment. In its opinion, the Court observed:

It is apparent from the testimony that what was on

[the patient’s] mind was not only the invasiveness

of life-sustaining systems, such as the NG tube, upon

the integrity of his body. It was also the utter help-

lessness of the permanently comatose person, the

wasting of a once strong body, and the submission

of the most private bodily functions to the attention

of others. In the face of those understandable con-

cerns, “[t]he law recognizes the individual’s right to

preserve his humanity, even if to preserve his hu-

manity means to allow the natural processes of a

26 Bartling v. Glendale Adventist Medical Ctr., 209 Cal. Rptr. 220,

222 (Cal. Ct. App. 1984).

11

disease or affliction to bring about a death with

dignity.” ””

Similarly, the Supreme Court of Minnesota assumed that

a patient who had not provided advance directives on this

point, nevertheless “may well have wished to avoid, as

one writer vividly put it, ‘The ultimate horror [not of]

death but the possibility of being maintained in limbo, in

a sterile room, by machines controlled by strangers.’ ” **

As hospice providers well know, the sentiments de-

scribed above are common in dying people for whom main-

taining control over treatment is essential to human dig-

nity and emotional health. Indeed, one of the most frus-

trating and frightening aspects of illness and hospitali-

zation is the sense of losing control and thereby losing

individuality.”

Serious illnesses of ali kinds bring with them dif-

ficult psychosocial problems. Feelings of fear, depres-

sion, loneliness, and loss of control are almost univer-

sal among the sick .... The fact of imminent

death introduces the whole panorama of problems

related to death, separation, and loss. Superimposed

now on the fear of pain and discomfort arising from

illness are fears about dying and death. For the

patient this includes fear of loss of dignity, au-

tonomy, identity, and personhood.”

27 In re Gardner, 534 A.2d at 953, quoting Brophy, 497 N.E.2d

at 635.

28 Jn re Torres, 357 N.W.2d 332, 340 (Minn. 1984) (citation

omitted).

29 A Matter Of Choice, supra n.3, at 4-5. See also Rodin, “Aging

and Health: Effects on the Sense of Control,” 233 Science 1271

(Sept. 19, 1986); Viner, “Life at the Other End of the Endo-

tracheal Tube: A Physic an’s View of Critical Illness,” 2 Prog.

Crit. Care Med. 3 (1985), reprinted in Dying With Dignity: Diffi-

cuit Times, Difficult Choices: Hearing Before the House Select

Comm. on Aging, 99th Cong., Ist Sess., at 79 (Comm. print 1985).

30 J. Zimmerman, Hospice: Complete Care for the Terminally IU

at 3 (2d ed. 1986).

12

As a consequence, one of the human problems hospice

nurses must learn to identify and treat has been termed

“annihilation anxiety,” in which:

The staff and family become “they” or “those peo-

ple”, just as the patient fears becoming only a num-

ber or a thing. Fear of losing sanity means fear of

losing whatever makes sense and becoming nothing

at all.

Thus, dying patients need more than freedom from

painful procedures; they need to maintain control and to

chart their own course. This Court recognized the im-

portance of such self-determination and personal dignity

when it ruled that compulsory surgery performed under

anesthesia violated the Fourth Amendment—not because

of any physical pain, but because surgery under anes-

thesia “involves a virtually total divestment of [one’s]

ordinary control” over the procedures performed. Yet,

out of a short-sightedness and an insensitivity that bor-

dered on the inhumane, the Missouri Supreme Court

overlooked (or ignored) all these critical values and in-

terests that lie at the core of personhood. Without analy-

sis, it simply declared that the State’s forced intrusicn

upon the dying was no burden to them and was therefore

justified.* As hospice providers and those they serve

well know, the court could not have been more wrong.

Being stripped of dignity and autonomy as death ap-

proaches is the ultimate burden for the dying. Our Con-

stitution should be held to prohibit it.

31 Buschman, supra n.4 at 77, 82, quoting Weisman, “Psychosocial

Considerations in Terminal Care,” in Schoeberg, Carr, Peretz and

Kutscher (eds.), Psychosocial Aspects of Terminal Care 162 (1972).

32 Winston v. Lee, 470 U.S. at 765.

33 According to the court, “the burdens” associated. with un-

wanted treatment are “not excessive” or “substantial to the patient

and whatever “constitutional right” the dying may have “to refuse

[such] treatment” is always “outweigh[ed]” by “[t]he State’s in-

terest in the preservation of life.” Pet. App. at A38, A43.

a a ee =

13

II. THE RIGHTS OF DYING INDIVIDUALS ARE NOT

EXTINGUISHED BY THEIR INCAPACITY

That an individual’s constitutional rights are not ter-

minated by illness or incapacity should go without say-

ing. As virtually every court addressing the question has

ruled: “the right of terminally ill patients should not be

lost when they suffer irreversible brain damage, become

comatose, and are no longer able to personally express

their wishes ... .” Rather, the right to refuse treat-

ment “must extend to the case of an incompetent, as well

as a competent, patient because the value of human dig-

nity extends to both.” ** Indeed, equal protection requires

that it be so.

What possible societal policy objective is vindicated

or furthered by treating the two groups of terminally

ill differently? What is gained by granting such a

fundamentai right only to those who, though termi-

nally ill, have not suffered brain damage and coma in

the last stages of the dying process? The very notion

raises the spectre of constitutional infirmity. .. .**

To dery to the incapacitated the right to have a prior

treatment choice implemented would discriminate against

the disabled by depriving them of a constitutional right

solely because their capacity to assert that right is im-

paired.

The only difference between competent and incompetent

patients in this regard is the means by which their right

to refuse treatment is implemented.** Many states au-

34 John F. Kennedy Memorial Hosp. v. Bludworth, 452 So.2d 921,

924 (Fla. 1984).

85 Saikewicz, 370 N.E.2d at 427.

36 Jd., quoting Eichner v. Dillon, 426 N.Y.S.2d 517 (N.Y. App.

Div. 1980), mod. & consolidated sub nom. In re Storar, 420 N.E.2d

64 (N.Y.), cert. denied, 454 U.S. 858 (1981), (emphasis in origi-

nal).

87 John F. Kennedy Memorial Hosp. v. Bludworth, 452 So.2d at

924-925; Saikewicz, 370 N.E.2d at 423.

14

’

thorize advance directives, such as “living wills” and

duraple powers of attorney, through which individuals

provide instructions about their health care to be imple-

mented in case of subsequent incapacity.** Yet in this

case the Missouri Supreme Court strongly suggested that

even a properly executed living will should not be honored

because a person could never know in advance the pre-

cise medical facts necessary for making an informed

choice at some future time.*

Further, both the Missouri Supreme Court and the

State’s Attorney General take the extraordinary position

that certain kinds of treatment—such as forced nutri-

tion and hydration—are always beyond the control of the

individuai, either while competent or through an advance

directive such as a living will.“ Such reasoning renders

living wills nugatory and takes from the dying the right

of choice at the moment when that right is most impor-

tant to them. This Court should not accept that view.

The right to refuse treatment is meaningless unless it

survives incapacity. Any other view would eviscerate the

right and lead to intolerable results.

It may be that a patient will make an informed deci-

sion against undergoing a particular procedure yet,

once the person’s condition deteriorates to be life-

threatening, the physician may perform the proce-

dure against the patient’s will on the grounds that

the situation was an emergency and informed consent

was therefore not required.”

38 See generally A Matter of Choice, supra n.3.

39 Pet. App. at A21 (“It is definitionally impossible for a person

to make an informed decision—either to consent or to refuse—

under hypothetical circumstances”). See also, Pet. App. at A37.

40In so ruling, the State admittedly rejects the rulings of vir-

tually every state and federal court that previously addressed this

issue. Pet. App. at Al0, n.4 and A29-30.

41 Andrews, “Informed Consent Statutes and the Decisionmaking

Process,” 5(2) J. Legal Med. 163, 208 (1984). See also, Leach v.

a 15

Accordingly, if a patient rejects life-sustaining treatment

with a clear understanding of the effects of such refusal—

which the trial court found to be the case with Nancy

Cruzan—‘“the materialization of such effects should not

be used to invalidate the decision made while compe-

tent.” * This Court should so hold in this case.

Iii. THE STATE HAS NO INTEREST SUFFICIENT

TO OVERRIDE THE TREATMENT CHOICES OF

DYING INDIVIDUALS

Missouri’s living will law affirms that every individ-

ual “has the primary right to request or refuse medical

treatment subject [only] to the state’s interest in pro-

tecting innocent third parties, preventing homicide and

suicide and preserving good ethical standards of the

medical profession.” ** The Missouri Supreme Court ac-

knowledged that none of those three enumerated State

interests is implicated in this case.“ But the court nev-

ertheless perceived a fourth “unqualified” State interest

—preservation of life no matter the circumstances of

that life—and proclaimed this interest paramount even

though the legislature did not include that interest in its

list of considerations that would limit an individual’s

right to refuse medical treatment. It strains credulity

that the legislature would fail even to mention an inter-

est it considered to be of such overriding importance.

In any event, the State’s supposed interest in the pro-

tection of life cannot overcome a dying person’s right to

bodily integrity and personal dignity: “[t]he notion that

the individual exists for the good of the state is, of

Shapiro, 469 N.E.2d 1047, 1053 (Ohio Ct. App. 1984) (“a physician

could circumvent the express wishes of a terminal patient by wait-

ing to act until the patient was comatose and critical”’).

*2 Andrews, supra n.41 at 208.

43 Mo. Rev. Stat. § 459.055(1) (1985).

* Pet. App. at A25.

-—-

16

course, quite antithetical to our fundamental thesis that

the role of the state is to ensure a maximum of individ-

ual freedom of choice and conduct.” * An unexplained,

undifferentiated State insistence on prolonging life in

every case—no matter the circumstances, no matter the

deprivation of personal freedom to the dying—should not

be found sufficient to undo basic individual rights.

Nor may the State limit the exercise of such rights by

invoking distinctions for which a rational basis is neither

proposed nor supportable. Given that one has a funda-

mental right to accept or decline medical treatment, the

State may not deny to patients receiving artificial

nourishment the rights afforded to patients receiving

artificial respiration, without demonstrating that the two

groups of patients differ in a legally relevant way.“

No such showing has been made nor could be made.

Indeed, the organized medical community has concluded

that artificial nourishment and hydration constitute medi-

cal treatment that is no different medically or morally

from other life-sustaining procedures. The AMA Judicial

Council has in fact issued the following opinion:

Even if death is not imminent but a patient’s coma

is beyond doubt irreversible and there are adequate

safeguards to confirm the accuracy of the diagnosis

and with the concurrence of those who have respon-

sibility for the care of the patient, it is not unethical

to discontinue all means of life-prolonging medical

treatment.

Life-prolonging medical treatment includes medica-

tion and artificially or technologically supplied respi-

ration, nutrition or hydration. In treating a termi-

nally ill or irreversibly comatose patient, the physi-

cian should determine whether the benefits of treat-

~

45 In re Osborne, 294 A.2d 372, 375 n.5 (D.C. 1972).

46 Fisenstadt, 405 U.S. at 447-448.

~ ee eee ee

» 47

-

~<oe @ee

|

ment outweigh its burdens. At all + aes the dignity

of the patient should be maintain

With the exception of the Cruzan court, the state and

federal courts that have addressed the issue have uni-

formly held that there is no legal basis for distinguishing

the artificial provision of nutrition and hydration through

a gastrostomy tube from any other procedure which sup-

plants a necessary bodily function.** Moreover, the no-

tion that artificial nutrition and hydration differ from

artificial respiration or kidney dialysis is insupportable

in view of the fact that a patient dies just as surely

from the removal! of the latter as the former.

The State of Missouri, like all States, does indeed have

significant interests—and responsibilities—in protecting

life. But it also has the obligation to distinguish among

the persons it seeks to protect, and to recognize that some

of those persons do not need, do not want, and are entitled

to reject the State’s “protection.” The National Hospice

Organization knows from years of experience that many

of the dying are included in that group of people. We

submit that their choice to reject State “protection” is

a basic right that should be honored by the Court in

this case.

*7 Council on Ethical & Judicial Affairs of the American Medical

Association, Current Opinions (1986) Opinion 2.18 (emphasis

added). See also “The Appleton Consensus: Suggested Interna-

tional Guidelines for Decisions to Forego Medical Treatment”

(1988), reprinted in 151(11) J. of Danish Med. Assoc. 700 (1989).

48 See In re Gardner, 534 A.2d at 954 and cases cited therein.

See also In re Prange, 527 N.E.2d 303 (Ill.), cert. denied, 109

S. Ct. 229 (1988.

18

CONCLUSION

This Court should reverse the decision of the Supreme

Court of Missouri, should recognize the right of the dying

to refuse unwanted treatment, should receznize further

that that right is not extinguished by incapacity, and

should recognize finally that the State has no interest

sufficient to override that right.

Respectfully submitted,

BARBARA F. MISHKIN

WALTER A. SMITH, JR.*

ANN MORGAN VICKERY

HOGAN & HARTSON

555 13th Street, N.W.

Washington, D.C. 20004

(202) 637-5728

Counsel for Amicus Curiae

* Counsel of Record National Hospice Urganization