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IN THE DISTRICT COURT OF APPEAL, SECOND DISTRICT
LAKELAND, FLORIDA
CASE NO. 2D02-5394

In re GUARDIANSHIP OF
THERESA MARIE SCHIAVO,
Incapacitated.

ROBERT and MARY SCHINDLER,

Appellants,

v.

MICHAEL SCHIAVO,
Appellee.

BRIEF OF AMICI CURIAE NOT DEAD YET ET AL. IN SUPPORT OF APPELLANTS AND REQUESTING REVERSAL
(Full listing of Amici on inside cover)

On Appeal from the Final Judgment Entered in the Sixth Judicial Circuit The Honorable George W. Greer, Presiding Judge

Max Lapertosa, Esq.
Kenneth M. Walden, Esq.
Access Living
614 West Roosevelt Road
Chicago, IL 60607
Tel: (312) 253-7000
Fax: (312) 253-7001

George K. Rahdert, Esq.*
FBN: 213365 / SPN: 0058975
Rahdert, Steele, Bryan & Bole, PA
535 Central Avenue
St. Petersburg, FL 33701
Tel: (727) 823-4191
Fax: (727) 823-6189

Attorneys for Amici

ORGANIZATIONS AND INDIVIDUALS
JOINING AS AMICI CURIAE

NOT DEAD YET

ADAPT

AMERICAN ASSOCIATION OF PEOPLE WITH DISABILITIES

CENTER FOR SELF-DETERMINATION

CENTER ON HUMAN POLICY AT SYRACUSE UNIVERSITY

REV. RUS COOPER-DOWDA

DISABILITY RIGHTS EDUCATION & DEFENSE FUND

HALF THE PLANET FOUNDATION

HOSPICE PATIENTS' ALLIANCE

DR. JAMES HALL

NATIONAL COUNCIL ON INDEPENDENT LIVING

NATIONAL SPINAL CORD INJURY ASSOCIATION

SELF-ADVOCATES BECOMING EMPOWERED

TASH (formerly The Association for the Severely Handicapped)

WORLD ASSOCIATION OF PERSONS WITH DISABILITIES

WORLD INSTITUTE ON DISABILITY

TABLE OF CONTENTS

TABLE OF AUTHORITIES ii

I. INTRODUCTION AND STATEMENT OF INTEREST 1

II. SUMMARY OF ARGUMENT 4

III. ARGUMENT 5

A. THE COURT FAILED TO DETERMINE WHETHER MS. SCHIAVO, BY CLEAR AND CONVINCING EVIDENCE, WOULD HAVE WANTED TO DIE GIVEN THE NEW MEDICAL INFORMATION ON HER CONDITION 5

1. The Right to Refuse Treatment vs. the Right to Life 5

2. The Role of "Informed Consent" in the Decision to Withdraw Treatment 9

B. THE COURT MISAPPLIED THE LEGAL STANDARD FOR DETERMINING WHETHER MS. SCHIAVO IS IN A

PERSISTENT VEGETATIVE STATE 13

C. THE PROPOSED STARVATION AND DEHYDRATION WOULD VIOLATE THE AMERICANS WITH DISABILITIES ACT 17

IV. CONCLUSION 20

TABLE OF AUTHORITIES

CASES

Buck v. Bell, 274 U.S. 200 (1927). 3, 18

City of Cleburne v. Cleburne Living Center, 473 U.S. 432 (1985). 22

Conservatorship of Wendland, 28 P.3d 151 (Cal. 2001) 7

Cruzan v. Director, Missouri Dep't of Health, 497 U.S. 261 (1990). passim

Gouveia v. Phillips, 823 So.2d 215 (Fla. 4th Dist. Ct. App. 2002) 10

In re Guardianship of Browning, 543 So.2d 258 (Fla. 2nd Dist. Ct. App. 1990) passim

In re Guardianship of Schiavo, No. 90-2908-GD-003 (Fla. Cir. Ct. Pinellas County Nov. 22, 2002). passim

In re Jobes, 108 N.J. 394 (1987). 8, 14

In re Westchester County Med. Ctr., 531 N.E.2d 607 (N.Y. 1988) 6

Meyer v. Nebraska, 262 U.S. 390, 401-02 (1923) 18

Richard S. v. Dep't of Developmental Servs., No. SACV97-219 GLT (C.D. Cal. Mar. 27, 2000). 9

Schindler v. Schiavo, 780 So. 2d 176 (Fla. 2nd Dist. Ct. App.), cert. denied, 789 So.2d 348 (Fla. 2001) 12

Salgo v. Leland Stanford Jr. Univ. Bd. of Trustees, 317 P.2d 170 (Cal. 1970) ....10

Schindler v. Schiavo, 800 So.2d 640 (Fla. 2nd Dist. Ct. App. 2001) 12

Slomowitz v. Walker, 429 So.2d 797 (Fla. 4th Dist. Ct. App. 1983). 6 STATUTES

Fla. Stat. § 765.101(9) 10

Fla. Stat. § 765.101(12) 14

Fla. Stat. § 765.305(2)(b) 13

Titles II and III of the Americans with Disabilities Act, 42 U.S.C. §§ 12131 et seq. & 12181 et seq. 17

OTHER AUTHORITIES

"The Right to Kill," Time, Nov. 18, 1935, at 53-54 17

A. Shaw et al., "Ethical Issues in Pediatric Surgery," 60 Pediatrics 588 (1977) 18

B. Jennett, The Vegetative State, Medical Facts, Ethical and Legal Dilemmas (2002) 10

D. Crane, The Sanctity of Social Life (1975) 18

D. McKim, Heredity and Human Progress (1900) 17

D.B. Shurtlett, "Myelodysplasia: Management and Treatment," 10 Current Problems in Pediatrics 1 (1980). 18

F. Kennedy, "The Problem of Social Control of the Congenital Defective," 99 Am. J. Psych. 13-16 (1942). 17

H. Koenig et al., "Attitudes of Elderly Patients and Their Families Toward Physician-Assisted Suicide," 156 Arch. Internal Med. 2240-48 (1996). 8

Harriett McBryde Johnson, "Unspeakable Conversations: The Case for My Life," N.Y. Times Magazine, Feb. 16, 2003. 3

J. Tavalero, Look Up for Yes (1997). 16

K. Andrews et al., "Misdiagnosis of the vegetative state: retrospective study in a rehabilitation unit," 313 British Med. J. 13-16 (Jul. 6, 1996). 16

Nat Hentoff, "Are Handicapped Infants Worth Saving?" Village Voice (Jan 8, 1991) at 18 18

P. Singer, Rethinking Life and Death: The Collapse of Our Traditional Ethics (1994) 3

R.H. Gross et al., "Early Management and Decision-Making for the Treatment of Myelomeningocele," 72 Pediatrics 450 (1983) 18

Richard J. Neuhaus, "The Return of Eugenics," Commentary 15-26 (Apr. 1988). 18

TREATISES

W. Keeton, D. Dobbs, R. Keeton & D. Owen, Prosser & Keeton on the Law of Torts (5th Ed. 1984) 9

I. INTRODUCTION AND STATEMENT OF INTEREST

Amici are among the nation's leading organizations representing people with disabilities.1 Most are governed and staffed by a majority of people with disabilities of all types, including people with severe physical and cognitive disabilities. They join with the parents of Theresa Schiavo because the standards upon which Ms. Schiavo's life or death turn may, if defined broadly enough, also be applied to thousands of people with disabilities who, like Ms. Schiavo, cannot articulate their own views and must thus rely on third parties as substitute decision-makers. The need for constitutional limits on the powers of such decision makers is nowhere more clear that on a question as fundamental as life or death, because the consequences of abuse or misjudgment are both ultimate and irreversible. For this reason, neither a court nor any third party may base a decision on their own view of the affected person's "quality of life." Only the person's own desires may drive this determination.

This desire cannot be ascertained in isolation. It is intertwined with the affected person's medical diagnosis and prognosis. A person who decides to withhold treatment does so only after he or she has been informed of the medical consequences of the decision and all possible alternatives. Likewise, if a person may have or regain cognitive function, a court or third party may not determine a person would want to die simply on the assumption the person's life is not worth living. Even if reasonable minds disagree on any of these issues, any doubt or uncertainty counsels against death. Only then does the court remain true to the constitutional "clear and convincing" standard of proof required under these extraordinary circumstances.

The trial court below failed to adhere to these standards. In re Guardianship of Schiavo, No. 90-2908-GD-003, slip op. (Fla. Cir. Ct. Pinellas County Nov. 22, 2002). Despite hearing evidence from doctors with "very impressive credentials" that Ms. Schiavo was not in a persistent vegetative state, and despite finding that she exhibited signs of cognition and thought, the court authorized her death. This was not - nor did it purport to be - a finding based on "clear and convincing" evidence of Ms. Schiavo's desires. In such cases, a court may not substitute its own judgment but must find that Ms. Schiavo, after examining the conflicting medical evidence, would have had nothing less than a "firm and settled commitment" to die. The lower court here made no such determination.

The reasons behind the disability community's solidarity with Ms. Schiavo may not be immediately apparent. Yet a close examination of the issues shows that Ms. Schiavo's fate is intertwined with that of many people with disabilities who must rely on surrogates. If the legal standard of proof in cases involving termination of life support is watered down to the point where Ms. Schiavo's "quality of life" - as determined by others - justifies her death, then one cannot distinguish Ms. Schiavo from anyone else who is "incompetent," including thousands who cannot speak due to developmental or physical disabilities. It is naïve to believe such attitudes would not be used to justify the death of people with severe disabilities if the opportunity arose. For example, prominent ethicists such as Peter Singer of Princeton University have sanctioned the killing of people with severe disabilities based on a belief that they will not lead a "good" life and will burden their parents and society.2

These attitudes, which have a long and ugly history as justification for the sterilization or elimination of people with disabilities,3 may be nothing more than privately held prejudices. Yet they don the cloak of public sanction every time a court lowers the constitutional bar on substituted judgments and consequently broadens the category of people with disabilities whose lives may be terminated. For these reasons, Amici join with the Schindler family to urge reversal of the trial court below.

II. SUMMARY OF ARGUMENT

The trial court below committed two clear errors of law that require reversal.

First, the court failed to consider whether clear and convincing evidence existed that Ms. Schiavo, had she reviewed the new medical information adduced at the last hearing, would still have wanted to terminate life support. Instead, the trial court reviewed the evidence and determined, purely to its own satisfaction, that Ms. Schiavo's condition was sufficiently grave that her death was warranted. That is the very "best interests" standard this Court and the U.S. Supreme Court have rejected in such cases. The trial court's failure to consider what Ms. Schiavo's own decision would be in light of the new medical information - much of which gave her a strong chance of recovery - violates her substantive due process rights under the Florida and U.S. Constitutions.

Second, the trial court disregarded the applicable legal standard for determining whether Ms. Schiavo was in a "persistent vegetative state" - a necessary precondition for authorizing her guardian to terminate her life support. Contrary to Florida law and established medical practice, the trial court imposed a new requirement that persons with severe disabilities demonstrate not just voluntary action "of any kind," as the state law's plain language specifies, but rather "consistent" and "reproducible" actions or responses to establish their own cognition. This not only transgresses Florida's legal definition but also brings a new and ominous level of subjectivity into the process of determining "persistent vegetative state." The trial court's new standard would lead to inconsistent and overly broad determinations of what is or is not a "permanent vegetative state" and potentially subject thousands of people with severe cognitive disabilities to third-party enforcement of their "right" to die.

Finally, the denial of medical care based on cognitive disability constitutes illegal differential treatment under the Americans with Disabilities Act. Just as a person does not lose the right to refuse treatment by virtue of incompetence, so too does he or she not lose the right to medical treatment equal to other similarly-situated persons without cognitive disabilities. Absent strong constitutional justification (e.g. clear and convincing evidence the person would want to withhold treatment), any system that denies needed medical treatment to people with cognitive disabilities, because they have cognitive disabilities, violates the ADA.

III. ARGUMENT

A. THE COURT FAILED TO DETERMINE WHETHER MS. SCHIAVO, BY CLEAR AND CONVINCING EVIDENCE, WOULD HAVE WANTED TO DIE GIVEN THE NEW MEDICAL INFORMATION ON HER CONDITION._____

1. The Right to Refuse Treatment vs. the Right to Life

The seminal case on the constitutional limits of authorizing a person's death is Cruzan v. Director, Missouri Dep't of Health, 497 U.S. 261 (1990). In Cruzan, the U.S. Supreme Court upheld the Missouri Supreme Court's refusal to authorize termination of life support to Nancy Cruzan, a woman in a persistent vegetative state, because no "clear and convincing evidence" existed that Ms. Cruzan would have chosen to do so. Id. at 284. While recognizing a general right to refuse treatment, including life-sustaining measures, the Court added the caveat that what distinguished Ms. Cruzan's situation (and by extension Ms. Schiavo's) was her inability to state whether she would choose to exercise that right:

The difficulty with petitioners' claim is that in a sense it begs the question: An incompetent person is not able to make an informed and voluntary choice to exercise a hypothetical right to refuse treatment or any other right. Such a "right" must be exercised for her, if at all, by some sort of surrogate.

Id. at 280.

The Court held it was constitutionally appropriate to demand clear and convincing evidence that the incompetent person would have, in fact, chosen to withhold life-sustaining treatment. Under this standard, a court must find that "the patient held a firm and settled commitment to the termination of life supports under the circumstances ..." Id. at 285 n. 11 (quoting In re Westchester County Med. Ctr., 531 N.E.2d 607, 613 (N.Y. 1988)) (emphasis added); see also In re Guardianship of Browning, 543 So.2d 258, 273 (Fla. 2nd Dist. Ct. App. 1990) (quoting Slomowitz v. Walker, 429 So.2d 797, 800 (Fla. 4th Dist. Ct. App. 1983)). In so doing, the Court rejected not only lesser standards of proof but also the objective "best interests" standard, finding that "[w]e think a State may properly decline to make judgments about the 'quality' of life that a particular individual may enjoy ..." Id. at 281. Florida has adopted this standard. Browning, 543 So.2d at 269 ("[I]t is important for the surrogate decisionmaker to fully appreciate that he or she makes the decision which the patient would personally choose.") (emphasis added).

The reasons for this exacting standard are twofold. The first was the State's competing and compelling interest in preserving human life. Cruzan, 497 U.S. at 281. The second goes to the heart of the concern surrounding substituted judgment: a heightened evidentiary standard ensures the decision to live or die is truly that of the affected person rather than the surrogate. In this context, cases like Ms. Schiavo's raise two competing individual interests under the Due Process Clause - the right to refuse treatment and the right to life. Id. ("It cannot be disputed the Due Process Clause protects an interest in life..."); Conservatorship of Wendland, 28 P.3d 151, 163 (Cal. 2001) ("[T]he right to an appropriate decision by a court-appointed conservator does not necessarily equate with the conservatee's right to refuse treatment, or obviously take precedence over the conservatee's right to life ..."). And while the surrogate could potentially override either interest by acting contrary to the person's wishes, the Cruzan Court recognized the far greater danger lay in deciding wrongly that the person would want to die:

An erroneous decision not to terminate results in a maintenance of the status quo; the possibility of subsequent developments such as advancement in medical science, the discovery of new evidence regarding the patient's intent, changes in the law, or simply the unexpected death of the patient despite the administration of life-sustaining treatment at least create the potential that a wrong decision will eventually be corrected or its impact mitigated. An erroneous decision to withdraw life-sustaining treatment, however, is not susceptible of correction.

Id. at 283.

The Supreme Court also expressed skepticism about the ability of third parties accurately to prognosticate the wishes of a person who is incompetent. Id. at 281. The Court recognized that in "some unfortunate situations ... family members will not act to protect a patient." Id. at 281 (quoting In re Jobes, 108 N.J. 394 (1987)). 4 Thus, states "are entitled to guard against potential abuses in such situations." Id.

This Court has recognized similar concerns about the potential for abuse when third parties make decisions on whether a person should live or die:

The Ethics and Advocacy Task Force, as amicus curiae, raises a very legitimate concern that the "right to die" could become a license to kill. There are times when some people believe that another would be "better off dead" even though the other person is still fighting vigorously to live. Euthanasia is a crime in this state. § 782.08, Fla. Stat. (1987). Despite the tremendous advances achieved in this century, the world has witnessed the extermination of retarded and mentally disturbed persons for whom a foreign government decided that death was the proper prescription. Thus, it cannot be overemphasized that the remedy announced in this opinion and the procedures designed to safeguard that remedy are based upon the patient's right to make a personal and private decision and not upon other interests.

Browning, 543 So.2d at 269 (emphasis added). Given the fundamental life interests at stake, it would undoubtedly be unconstitutional for any state to fail to guard against these abuses.5

2. The Role of "Informed Consent" in the Decision to Withdraw Treatment_________________________

The personal decision to withdraw treatment cannot be divorced from available information on the person's medical condition. As the Cruzan Court recognized, the right to refuse treatment carries with it the doctrine of "informed consent." 497 U.S. at 269 (citing W. Keeton, D. Dobbs, R. Keeton & D. Owen, Prosser & Keeton on the Law of Torts § 32, pp. 189-192 (5th Ed. 1984)). As this Court has held, "informed consent" requires medical practitioners to disclose fully to their patients the consequences of accepting, or refusing, treatment:

A physician violates his duty to his patient and subjects himself to liability if he withholds any facts which are necessary to form the basis of an intelligent consent by the patient to the proposed treatment.

Gouveia v. Phillips, 823 So.2d 215, 224 (Fla. 4th Dist. Ct. App. 2002) (emphasis added) (quoting Salgo v. Leland Stanford Jr. Univ. Bd. of Trustees, 317 P.2d 170, 181 (Cal. 1970)); see also Fla. Stat. § 765.101(9) (2002) (defining "informed consent" as consent given "after a sufficient explanation and disclosure ... to enable the person to have a general understanding of the treatment or procedure and the medically acceptable alternatives ...").6

This Court has similarly recognized the relationship between a person's medical diagnosis and the decision to withhold treatment. Courts must "balanc[e] the various factors that influence a decision to withhold life-sustaining treatment," including "a complete and descriptive analysis of the patient's physical condition." Browning, 543 So.2d at 268.7

Given the informed consent doctrine and its integral role in Ms. Schiavo's right to refuse treatment, the trial court below was required to find by clear and convincing evidence that Ms. Schiavo, after having been presented with new medical evidence on her condition, would still have opted to die. If she might have wanted to live based on this information, the trial court below could not authorize her death. Browning, 543 So.2d at 273 ("In cases of doubt, we must assume that a patient would choose to defend life in exercising his or her right to privacy.").

Nowhere is it evident the trial court below undertook such an analysis. In re Guardianship of Schiavo, No. 90-2908-GD-003, slip op. (Fla. Cir. Ct. Pinellas County Nov. 22, 2002). Indeed, the trial court's uncontroverted factual findings undermine any assertion of a "firm and settled commitment" by Ms. Schiavo to terminate life support. The Court found the medical experts were "well-prepared" and had "very impressive credentials and resumes." Id., slip op. at 3. Two of these experts found Ms. Schiavo was not in a persistent vegetative state and that certain untried therapies would give Ms. Schiavo a good chance of recovery. Id., slip op. at 4-5. Although other doctors disagreed,8 sufficient, credible medical information existed upon which Ms. Schiavo could have reasonably based a decision to live.

But the trial court simply did not address what Ms. Schiavo's determination would have been. Instead, it examined the expert reports and concluded that "some of the [expert] testimony was more credible than other testimony ...".9 Id., slip op. at 3. In so doing, the trial court appears to have lost sight of the underlying rationale behind the constitutional doctrine at issue here. In cases like Ms. Schiavo's, the right to refuse treatment is not a mechanical process by which a court determines a person's diagnosis and, if it meets certain criteria, automatically authorizes a person's death. Rather, the right is personal to Ms. Schiavo, and the trial court was required to determine her wishes, resolving any doubt or ambiguity in favor of life. Browning, 543 So.2d at 273. The trial court's failure to do so is a clear error of law that requires reversal.

B. THE COURT MISAPPLIED THE LEGAL STANDARD FOR DETERMINING WHETHER MS. SCHIAVO IS IN A PERSISTENT VEGETATIVE STATE.____________________

The trial court applied the wrong legal standard for whether Ms. Schiavo was in a "persistent vegetative state." This omission has two important consequences. First, as explained above, correctly determining Ms. Schiavo's condition is a vital factor in determining whether Ms. Schiavo would have decided to refuse treatment. Second, under Florida law, correctly determining Ms. Schiavo is in a persistent vegetative state "is required to determine the necessity for a surrogate to make the decision [to terminate life support]." Browning, 543 So.2d at 272; see also Fla. Stat. § 765.305(2)(b) (patient must be in terminal, end-state, or persistent vegetative state before surrogate may exercise patient's right to refuse treatment). This is because a person who is not in a persistent vegetative state may "regain sufficient competency to assist in the decisionmaking process," thus justifying deferral of the decision to terminate life support. Id.

There is no dispute Ms. Schiavo has neither a "terminal" or "end-stage" condition. The only dispute is whether she is in a "persistent vegetative state." If she is not, the trial court may not, under Florida law, authorize a surrogate to terminate her life under any circumstances.

Florida law defines "persistent vegetative state" as follows:

A permanent and irreversible condition of unconsciousness in which there is: (a) the absence of voluntary action or cognitive behavior of any kind. (b) An inability to communicate or interact purposefully with the environment.

Fla. Stat. § 765.101(12) (emphasis added). This definition comports with that found by the Supreme Court in Cruzan:

Vegetative state describes a body which is functioning entirely in terms of its internal controls. It maintains temperature. It maintains heart beat and pulmonary ventilation. It maintains digestive activity. It maintains reflex activity of muscles and nerves for low level conditioned responses. But there is no behavioral evidence of either self-awareness or awareness of the surroundings in a learned manner.

497 U.S. at 266 n. 1 (emphasis added) (quoting In re Jobes, 108 N.J. 394, 403 (1987)).

Under this strict definition, the trial court's factual findings mandated a conclusion that Ms. Schiavo was not in a "persistent vegetative state." This is because the trial court found evidence that Ms. Schiavo exhibited "voluntary action" or "cognitive behavior." For example, the court found that "[a]t first blush, the video of Terry Schiavo appearing to smile and look lovingly at her mother seemed to represent cognition. This was also true for how she followed the Mickey Mouse balloon held by her father." Guardianship of Schiavo, slip op. at 4.

The issue for the trial court was therefore not that Ms. Schiavo lacked any voluntary action. Rather, the court believed Ms. Schiavo had not demonstrated sufficient actions to prove "cognitive function" because her actions were not "consistent" or "reproducible." This is simply not the definition the Florida Legislature and the U.S. Supreme Court have ascribed to "persistent vegetative state." "Voluntary action ... of any kind" does not require the person repeat the same action "consistently." The trial court committed a clear error of law by adding this new requirement.

There is an inherent danger in imposing such subjective criteria to this important threshold determination. The trial court's new requirement of "consistent" and "reproducible" action begs the question how much "action" Ms. Schiavo would have to exhibit to prove she is not in a persistent vegetative state (and concomitantly not cede her right to maintain life support). Would three voluntary "actions" be enough? Would ten? Moreover, how would courts determine whether such actions are "consistent"? How much variance, if any, would be allowed?

These questions are of no small concern to Amici, who represent thousands of people with cognitive disabilities who similarly do not exhibit "consistent" and "reproducible" actions. For example, many people with severe developmental disabilities such as autism or Down Syndrome are completely nonverbal and may not exhibit "consistent" responses to stimuli, yet are nevertheless capable of cognitive thought or voluntary action. The trial court's new requirement makes it difficult if not impossible to distinguish such persons. In addition, such necessarily subjective determinations on the sufficiency of a person's behavior invite the very "quality of life" judgments this Court and the U.S. Supreme Court have held are inappropriate here.

The Florida Legislature wisely avoided opening this Pandora's box by applying the term "persistent vegetative state" only to persons who beyond professional doubt lack any voluntary or cognitive abilities.10 This strict definition not only avoids the slippery slope described above but is also appropriate given the fundamental life interests at stake. When the consequence of an erroneous determination is a person's wrongful and premature death, it is appropriate, indeed necessary, to insist on a narrow, clear, and objective definition of "persistent vegetative state."

C. THE PROPOSED STARVATION AND DEHYDRATION WOULD VIOLATE THE AMERICANS WITH DISABILITIES ACT.______

The trial court decision should also be reversed because, absent constitutional safeguards for self-determination, the proposed dehydration and starvation violates Titles II and III of the Americans with Disabilities Act, 42 U.S.C. §§ 12131 et seq. & 12181 et seq. Lethal and medical discrimination against people with severe disabilities and functional limitations is an integral and pervasive part of America's 20th century history. The forms of this lethal discrimination include:

1. Euthanasia, where nondisabled persons advocated for the involuntary euthanasia of 60,000 persons with disabilities in institutions and five times as many outside, because in such "hopeless" cases "we have no fear of error";11

2. Eugenics "favoring the killing of defective children";12

3. Involuntary sterilization of persons with developmental and physical disabilities;13

4. denial of life-saving medical assistance especially to children with severe physical disabilities;14 and

5. withdrawal of medical treatment.

The Supreme Court has acknowledged that the practice of withholding lifesaving medical assistance by medical professionals from children with lifelong severe disabilities has a "history of unfair and often grotesque mistreatment" arising from a legacy of "prejudice and ignorance" and continuing well into the 20th century. City of Cleburne v. Cleburne Living Center, 473 U.S. 432, 453 (Stevens, J., joined by Burger, C.J., concurring), 455 (Marshall, joined by Brennan & Blackmun, JJ., concurring) (1985). Congress clearly understood this history when, in 1990, it enacted the Americans with Disabilities Act (ADA), the basic civil rights statute for people with disabilities.

Treating people differently based on health or disability status violates the rights of people with disabilities under the ADA. Absent proof that it is truly the person's decision, withholding medical care based on the belief that he or she would rationally want to die because of a disability is discriminatory. Because of bias against disability and ignorance about the support systems and successful coping strategies that preserve autonomy, meaning and pleasure in life, some physicians have decided that some deaths are more rational than others and that ill and disabled people do not deserve the same type of health care that "competent" people would receive. When health care providers deny people with severe cognitive disabilities the health care they need to live, but do not do so for others, they violate Title III of the ADA, governing health care providers and other "public accommodations." When state and local governments establish laws and policies that deprive people with cognitive disabilities of the care granted to "competent" persons, they violate Title II of the ADA.

IV. CONCLUSION

For the reasons stated above, Amici respectfully request this Court reverse the decision of the trial court in full.

Dated February 21, 2003. RESPECTFULLY SUBMITTED,
_________________________________
GEORGE K. RAHDERT, ESQ.
FBN: 213365 / SPN: 0058975
RAHDERT, STEELE, BRYAN & BOLE, P.A.
535 Central Avenue
St. Petersburg, FL 33701
Tel: (727) 823-4191
Fax: (727) 823-6189

MAX LAPERTOSA, ESQ.
KENNETH M. WALDEN, ESQ.
ACCESS LIVING
614 West Roosevelt Road
Chicago, IL 60607
Tel: (312) 253-7000
Fax: (312) 253-7001

Attorneys for Amici Curiae

* Assisted on the brief:

Diane Coleman, President
Not Dead Yet

1 Organizations and individuals joining as amici are listed on the inside of the cover.

2 Professor Singer has written that it is impossible to kill people with cognitive disabilities "against their will" "because they are not capable of having a will on such a matter." P. Singer, Rethinking Life and Death: The Collapse of Our Traditional Ethics 197-98 (1994). See also Harriett McBryde Johnson, "Unspeakable Conversations: The Case for My Life," N.Y. Times Magazine, Feb. 16, 2003.

3 See e.g. Buck v. Bell, 274 U.S. 200, 207 (1927) (in upholding sterilization of woman with mental retardation, Court held that "[i]t is better for all the world, if instead of waiting to execute degenerate offspring of crime, or to let them starve from their imbecility, society can prevent those who are manifestly unfit from continuing their kind ... One generation of imbeciles is enough.").

4 Studies have shown that even family members with good intentions may not accurately predict the wishes of their disabled relatives. See e.g. H. Koenig et al., "Attitudes of Elderly Patients and Their Families Toward Physician-Assisted Suicide," 156 Arch. Internal Med. 2240-48 (1996).

5 States violate due process when they authorize guardians to waive the fundamental rights of their wards. For example, a federal court held that California violated the due process rights of people with disabilities by allowing their guardians to override their right to move out of a state institution and into the community. "No matter how well-meaning these third parties may be," the Court wrote, "such an automatic veto policy is not appropriate." Richard S. v. Dep't of Developmental Servs., No. SACV97-219 GLT (C.D. Cal. Mar. 27, 2000), slip. op. at 6.

6 Although not necessary to their argument here, Amici submit that where the "treatment" is food and water, the risk of abuse or misjudgment by a surrogate is heightened and should thus be further restricted. Unlike purely medical treatment, when food and water is withdrawn, the cause of death is not the terminal or underlying condition but rather starvation or hydration. There is a disturbing circularity here, as this Court has recognized: "[A]ny condition is 'terminal' because almost any human would die within a few days if food and water were withdrawn." Browning, 543 So.2d at 265. Furthermore, many people in vegetative states are placed on feeding tubes even when they are capable of being fed, whether for administrative convenience or lack of adequate staff. B. Jennett, The Vegetative State, Medical Facts, Ethical and Legal Dilemmas 18 (2002). Thus, many disability organizations have called for greater restrictions on the withdrawal of food and water to ensure that natural death from an underlying condition is truly imminent and that the surrogate is not creating the "terminal" condition.

7 While reaching many of the same conclusions as Cruzan, Browning was decided approximately two months before Cruzan and therefore did not have the benefit of the Supreme Court's discussion, particularly concerning the consequences of an erroneous decision to terminate life support to the person's fundamental life interests. Browning also presented far different facts from this case. In Browning, the affected woman had unambiguously declared her intentions through a living will. In addition, she was 86 years old and near the end of her natural life. Under these circumstances - both absent here - this Court found clear and convincing evidence that the woman would have wanted to withdraw life support.

8 Conflicting medical information in such situations is not unusual, given the trial court's observation that "medicine is not a precise science". Id., slip. op. at 6.

9 Although an earlier decision of this Court found by clear and convincing evidence that Ms. Schiavo would have wanted to die, see Schindler v. Schiavo, 780 So. 2d 176 (Fla. 2nd Dist. Ct. App.), cert. denied, 789 So.2d 348 (Fla. 2001) ("Schiavo I"), this finding is no longer valid in light of the Court's subsequent decisions. This Court's last decision obligated the trial court to hear evidence on "Mrs. Schiavo's current medical condition" and gave it discretion to decide "any other factor that the trial court itself determines to be necessary for it to decide whether this evidence calls into question the initial judgment." Schindler v. Schiavo, 800 So. 2d 640, 647 (Fla. 2nd Dist. Ct. App. 2001). Using this direction, the trial court appropriately re-examined Ms. Schiavo's medical condition in light of the new medical evidence, but inappropriately did so without considering Ms. Schiavo's desires in light of this new information. Thus, this issue remains open for resolution and is not estopped by Schiavo I.

10 A narrow and objective definition is also appropriate given that doctors have often confused severe disability with persistent vegetative state. One study examined the records of all patients admitted to a hospital rehabilitation unit for a three year period and found:

Of 40 patients referred as being in the vegetative state, 17 (43%) were considered as having been misdiagnosed; seven of these had been presumed to be vegetative for longer than one year, including three for over four years. Most of the misdiagnosed patients were blind or severely visually impaired. All patients remained severely physically disabled, but nearly all were able to communicate their preference in quality of life issues - some to a high level.

K. Andrews et al., "Misdiagnosis of the vegetative state: retrospective study in a rehabilitation unit," 313 British Med. J. 13-16 (Jul. 6, 1996). Another woman who was similarly misdiagnosed, Julia Tavalaro, has written:

Thirty years ago a stroke left me in a coma. When I awoke I found myself completely paralyzed and unable to speak. For six years I was considered brain dead. I was not.

J. Tavalero, Look Up for Yes (1997).

11 F. Kennedy, "The Problem of Social Control of the Congenital Defective," 99 Am. J. Psych. 13-16 (1942); see also "The Right to Kill," Time, Nov. 18, 1935, at 53-54 (where a Nobel Prize winner at the Rockefeller Institute urged that "sentimental prejudice... not obstruct the quiet and painless disposition of incurable... and hopeless lunatics"); D. McKim, Heredity and Human Progress 189,193 (1900)(where a respected New York physician advocated the elimination of all children with severe disabilities, including "idiots," most "imbeciles, and the greater number of epileptics," for society's protection, via a "gentle, painless death" by the inhalation of carbonic gas).

12 D.B. Shurtlett, "Myelodysplasia: Management and Treatment," 10 Current Problems in Pediatrics 1, 8 (1980); see Nat Hentoff, "Are Handicapped Infants Worth Saving?" Village Voice (Jan 8, 1991) at 18; Richard J. Neuhaus, "The Return of Eugenics," Commentary 15-26 (Apr. 1988).

13 Although the Court recognized the historical practice of "'putting away ... the offspring of the inferior, or of the better when they chance to be deformed' [would] do ...violence to both the letter and spirit of the Constitution," Meyer v. Nebraska, 262 U.S. 390, 401-02 (1923), three years later it upheld as constitutional the forced sterilization of people labeled "feeble-minded." Buck v. Bell, 274 U.S. 200, 207 (1927).

14 Studies reveal that many physicians, a majority in some specialties, oppose lifesaving surgery for babies with lifelong disabilities. A. Shaw et al., "Ethical Issues in Pediatric Surgery," 60 Pediatrics 588, 590 (1977); R.H. Gross et al., "Early Management and Decision-Making for the Treatment of Myelomeningocele," 72 Pediatrics 450, 456 (1983) (reporting on the results of selection of disabled newborns for treatment between 1977 and 1982 at Oklahoma University Health Sciences Center that babies were provided - or denied - treatment based on such factors as their ambulatory potential, according to a "formula that also factored in the "contribution anticipated from his home and family and society"); D. Crane, The Sanctity of Social Life 96-98 (1975) (documenting that surgeons at a teaching hospital were less likely to perform surgery on Down Syndrome children with heart defects than survey studies would predict).