In response to the six-day denial of food and fluids to Terri Schindler-Schiavo, the National Right to Life Committee is calling on state legislatures throughout the nation to move to protect people with disabilities from being denied food and fluids. The organization is issuing a "Model Starvation and Dehydration of Persons with Disabilities Prevention Act" (text available at www.nrlc.org).

"Far from being an isolated instance, the attempted starvation and dehydration of Terri Schindler-Schiavo is typical of the denial of food and fluids in less publicized cases taking place daily in nursing homes and hospitals across America," said Burke J. Balch, J.D., director of the Robert Powell Center for Medical Ethics at the National Right to Life Committee.

"For years, people who never asked to die have been quietly starved without much public attention, based on state laws and court opinions that permit third parties to make deadly decisions with little or no scrutiny or accountability," Balch said. "The outcry over the Schindler-Schiavo case has awakened millions of Americans to the inhumanity of this practice. Now we must act to reverse this trend, and restore a presumption against starvation and dehydration."

The proposed model law, drafted to be easily adaptable for each state, is written to be constitutional under the governing precedents of the United States Supreme Court. It would create a presumption that those incapable of making health care decisions would wish to get food and fluids as long as their provision is medically possible, would not itself hasten death, and can be digested or absorbed so as to sustain life.

The presumption would not apply if the person has specifically authorized withholding or withdrawal in an applicable legal document (advance directive). To comply with the position mandated by a majority of Supreme Court justices in the 1990 Cruzan v. Director, MDH decision, the presumption would also not apply if there is clear and convincing evidence the person gave express and informed consent to rejection of food and fluids. The bill carefully defines "express and informed consent" to ensure that casual or uninformed statements cannot be used to meet the "clear and convincing" evidence test.

"We must not let the horror and outrage over the attempted starvation and dehydration of Terri Schindler-Schiavo dwindle and die away before we have acted to secure protection for the thousands facing a similar fate," said NRLC Executive Director David N. O'Steen, Ph.D.



Why do we need legislation to protect people with disabilities from starvation and dehydration?

The case of Terri Schindler-Schiavo, a woman with brain damage whose husband wanted to starve her but whose parents fought tenaciously to continue feeding, has horrified many Americans who are outraged that such a thing could occur in our country. An unprecedented outpouring from Florida citizens and sympathizers around the country drove the legislature to pass "Terri's Law," which allowed Florida Gov. Jeb Bush to intervene and order that she be given food and fluids.

What many fail to recognize is that, far from being an isolated instance, the proposed starvation and dehydration of Schindler-Schiavo in fact typifies the current law and common practice in most states. Since the 1980s, state statutes and court decisions have empowered third parties - - often relatives or hospital committees - - to choose to deny food and fluids to people with disabilities incapable of speaking for themselves so as to bring about their deaths. Tragically, in most cases in which there has been a dispute within the family, courts have sided with those seeking to deny food and fluids.

What can be done that the courts won't strike down?

In Cruzan v. Director, MDH, 497 U.S. 261 (1990), a majority of the U.S. Supreme Court stated that there is a constitutional right to reject artificially provided nutrition and hydration, but the Court held that a state may require clear and convincing evidence, in the case of an incompetent patient, that the rejection of nutrition and hydration conforms to the patient's wishes while competent.

In creating a presumption that an incompetent person would have wanted nutrition and hydration, the proposed bill provides that the presumption is overcome if the patient executed a valid written declaration (such as a living will) specifically rejecting nutrition and hydration in the applicable circumstances. It also allows the presumption to be overcome "[i]f there is clear and convincing evidence that the person, when competent, gave express and informed consent to withdrawing or withholding nutrition or hydration in the applicable circumstances." This is congruent with the evidentiary standard deemed constitutionally acceptable by the Court.

How will the bill protect patients from being denied nutrition and hydration without their consent?

A casual, thoughtless comment should not bring a death sentence. Instead, for nutrition or hydration to be denied the bill requires evidence of a decision that truly constitutes "express and informed consent." The bill provides, "'Express and informed consent' means consent voluntarily given with sufficient knowledge of the subject matter involved, including a general understanding of the medical condition of the person, the procedure, the medically acceptable alternative procedures or treatments, and the substantial risks and hazards inherent in the proposed treatment or procedures and from their omission, to enable the person giving consent to make an understanding and enlightened decision without any element of force, fraud, deceit, duress, or other form of constraint or coercion."

This is the critical core of the bill's protections. In a manner that comports with the parameters set forth by the U.S. Supreme Court, it assures that when there is no legal document specifying the person's wishes, only a statement based on a fully informed decision can be interpreted as "clear and convincing evidence" of an intent to reject nutrition and hydration.

Since the courts in the Schiavo case maintained there was "clear and convincing evidence" that Terri Schindler-Schiavo would have rejected nutrition and hydration, how would the proposed bill save her life?

Any bill that hopes to survive constitutional scrutiny, based on the existing precedents, must allow for "clear and convincing evidence" that a presently incompetent individual wanted to forego nutrition and hydration, even when the person never executed a legal document specifying his or her wishes. However, the bill requires that to meet the "clear and convincing evidence" standard, it must be shown that the person gave "express and informed consent" to rejecting nutrition and hydration. As noted above, there is a constitutionally defensible strict standard for what constitutes truly informed consent. The casual and indefinite statements which Michael Schiavo claimed (and the courts accepted) had been made by Teresa Schindler-Schiavo could not plausibly be said to have been made with a knowledge of the medical condition in which she now finds herself that was sufficient "to make an understanding and enlightened decision" based on "the procedure, the medically acceptable alternative procedures or treatments, and the substantial risks and hazards inherent in the proposed treatment or procedures and from their omission." Consequently, the presumption the bill creates for the provision of nutrition and hydration would apply to her.

Does the bill require nutrition and hydration in every instance in which it has not been specifically rejected by the patient?

The presumption for nutrition and hydration does not apply when it is medically impossible to provide it, when its provision would actually hasten death (as might be the case, for example, in some cases of kidney failure), or when the person is incapable of digesting or absorbing it in a way that would contribute to sustaining life (as may sometimes occur, for example, in the final stages of the dying process when death is imminent). To safeguard against abuse of these circumstances, the bill defines an objective standard for the "reasonable medical judgment" required to establish their existence.