UNITED STATES DISTRICT COURT

MIDDLE DISTRICT OF FLORIDA

TAMPA DIVISION

Civil Action No.:  8:03-CV-1860-T-26-TGW

 

 

THERESA MARIE SCHINDLER

SCHIAVO, Incapacitated, by her

Parents and Next Friends, ROBERT

and MARY SCHINDLER,

 

            Plaintiff,                                      

 

v.    

 

MICHAEL SCHIAVO, individually and

in his capacity as Guardian of the Person

of THERESA MARIE SCHINDLER

SCHIAVO, Incapacitated.

 

            Defendant.

                                                                            //

 

BRIEF AMICI CURIAE OF NOT DEAD YET ET AL. IN SUPPORT OF PLAINTIFF’S MOTION FOR PRELIMINARY INJUNCTION

 

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.

            Defendant, with the authorization of Florida law, proposes to terminate Ms. Schiavo’s life in contravention of these minimal constitutional standards.  See In re Guardianship of Schiavo, No. 90-2908-GD-003, slip op. (Fla. Cir. Ct. Pinellas County Nov. 22, 2002).  Although doctors with, in the words of the state court, “very impressive credentials” have testified that Ms. Schiavo was not in a persistent vegetative state, and although the state trial court found that she exhibited signs of cognition and thought, the guardian is moving forward with Ms. Schiavo’s death.  This decision is not – nor does it purport to be – based a finding of “clear and convincing” evidence of Ms. Schiavo’s desires.  In such cases, third parties may not substitute their 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.  No such determination has been made here.

            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 states lower the constitutional bar on substituted judgments by guardians such as Michael Schiavo and consequently broaden 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 termination of Ms. Schiavo’s life violates her substantive due process rights

under the Fourteenth Amendment in two ways.  First, Florida courts did not 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 the U.S. Supreme Court has 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 Fourteenth Amendment.

            Second, the trial court imposed a new, extralegal 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 established medical practice, the trial court required that persons with severe disabilities demonstrate not just voluntary action “of any kind,” as PVS has been defined, but rather “consistent” and “reproducible” actions or responses to establish their own cognition.  This arbitrary and capricious standard 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.  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)).  Under Florida law and the laws of other states, “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] 

            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 that such an analysis was performed in Ms. Schiavo’s case.  See In re Guardianship of Schiavo, No. 90-2908-GD-003, slip op. (Fla. Cir. Ct. Pinellas County Nov. 22, 2002).  Indeed, in her latest evidentiary hearing, the state trial court’s uncontroverted factual findings undermine any possible finding 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,[7] sufficient, credible medical information exists upon which Ms. Schiavo could reasonably base a decision to live. 

            But Defendant has simply not addressed what Ms. Schiavo’s determination would have been.  Instead, they examined the expert reports and concluded that “some of the [expert] testimony was more credible than other testimony …”.[8]  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.  The trial court’s failure to do so clearly violates Ms. Schiavo’s substantive due process right to life.

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, correctly determining Ms. Schiavo is in a persistent vegetative state is constitutionally required to determine the necessity for a surrogate to make the decision to terminate life support. 

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 authorize a surrogate to terminate her life under any circumstances. 

The Supreme Court in Cruzan defined “persistent vegetative state” as follows:

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)).[9]

Under this strict definition, the state 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 U.S. Supreme Court has ascribed to “persistent vegetative state.”  “Voluntary action … of any kind” does not require the person repeat the same action “consistently.”  This new requirement arbitrarily and capriciously subjects Ms. Schiavo and countless other people with disabilities to termination of her life support, in violation of the Fourteenth Amendment.

There is an inherent danger in imposing such subjective criteria to this important threshold determination.  The 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.  This 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 the U.S. Supreme Court has held are inappropriate here.

The Supreme Court 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.______

 

      Immediate injunctive relief is also appropriate because 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 grant Plaintiff’s motion for a preliminary injunction due to their likelihood of prevailing on the merits of their claims.

 

Dated October 3, 2003.                       RESPECTFULLY SUBMITTED,

 

 

 

                                                            _________________________________

                                                            MAX LAPERTOSA, ESQ.

                                                            KENNETH M. WALDEN, ESQ.

ACCESS LIVING OF METROPOLITAN CHICAGO

                                                            614 West Roosevelt Road

                                                            Chicago, IL  60607

                                                            Tel:  (312) 253-7000

                                                            Fax:  (312) 253-7001

 

                                                            Attorneys for Amici Curiae

 

APPENDIX

 

ORGANIZATIONS AND INDIVIDUALS

JOINING AS AMICI CURIAE

 

NOT DEAD YET

 

ADAPT

 

AMERICAN ASSOCIATION FOR PEOPLE WITH DISABILITIES

 

CENTER FOR SELF-DETERMINATION

CENTER ON HUMAN POLICY AT SYRACUSE UNIVERSITY

 

REV. RUS COOPER-DOWDA

 

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