In Re Guardianship of Theresa Marie Schiavo: Brief of Amici Curiae Not Dead Yet et Al.*

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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 persons 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 naive 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. …