There is much confusion and misunderstanding about the tragic case of Terri Schiavo - the Florida woman whose fate has become a matter of national attention in recent months. Schiavo has been seriously ill since a 1990 heart attack deprived her brain of oxygen for more than five minutes, causing severe and permanent loss of cognitive brain function. Her swallowing reflex was also compromised, so she has been kept alive - hydrated and nourished - by a feeding tube that was surgically implanted in her stomach.
Michael Schiavo, Terri's husband and legal guardian, consented to 10 years of medical life support and rehabilitation attempts that failed to improve Schiavo's condition. Finally, convinced that his wife would not want to be kept alive in such a degraded condition, with so little hope of recovery, Schiavo went to court to request that his wife's feeding tube be withdrawn so that she could be allowed to die.
Many - including Schiavo's sister, parents, several physicians, a majority of the Florida Legislature, and Florida's Gov. Jeb Bush - have opposed this request. This opposition is based on five myths which deserve closer consideration.
Myth 1: Terri Schiavo's rights would be violated by a decision to allow her to die; everyone in America enjoys the right to life.
Reality: As important as the right of life is, the right to self-determination clearly occupies first position as a decision criterion. There is a long-standing common-law tradition in American jurisprudence that recognizes the right not to be given medical treatments against one's will.
Myth 2: Since Terri Schiavo can not tell us what she would want, we should err on the side of life.
Reality: Like most Americans, Schiavo did not create a living will making her wishes clear. Still, the fact that she has no legal document indicating her wishes does not mean she sacrifices the right to have her wishes carried out. It only means that figuring out what she would want is a little harder to discern than it would be otherwise.
Florida, like most states, allows end-of-life decisions to be made on the basis of preferences that had been previously expressed orally, and informally. Failing that, decisions can be made on the basis of best guesses about what the patient would want. Florida and most other states allow the next of kin to make this determination so long as these surrogate decisionmakers are found to be acting in "good faith."
Myth 3: Michael Schiavo cannot be trusted.
Reality: Mr. Schiavo has been found by the Florida courts to be acting in good faith regarding his wife's wishes on numerous occasions. He has personally cared for his wife for years, going so far as to become a registered nurse, enabling him to personally provide the expert care she requires. There is no financial windfall he stands to gain, as some have suggested, and no other compelling conflict of interest that would disqualify him as his wife's legal guardian.
Myth 4: There is hope that Terri Schiavo's condition could improve.
Reality: Some physicians and nurses have testified that Schiavo is aware of her surroundings and that hope exists for a more complete recovery. Although no one can say for sure what Terri Schiavo's current state or prognosis is, court-appointed physicians who are expert in the area of brain functionality have determined that Schiavo is beyond awareness and that there is no reasonable, medically grounded expectation that her condition will ever improve.
Myth 5: Artificially provided nutrition and hydration (ANH) is equivalent to the provision of food and water by mouth, and should always be provided, if needed.
Reality: Every appellate court in the country (including the U.S. Supreme Court) agrees with the published professional ethics standards for doctors and nurses on this key point: ANH is a medical procedure that may be withheld or withdrawn like any other.
The question in Terri Schiavo's case is not about whether she has a right to self-determination (she does), nor whether this right trumps the sanctity of life (it does). The only important question to answer here is this: What would Terri Schiavo consent to, if she were able?
In the end, it's not about what Terri Schiavo's husband wants, or Gov. Bush wants, or what other family members, judges, legislators, right-to-life or right-to-die advocates want. It's about what Terri Schiavo would want, if only she could tell us.
It seems ironic that so many people who claim to be operating on her behalf have lost sight of the woman in the bed who, despite her condition, retains the unassailable right to self determination.
- James M. Hoefler, Ph.D., is coordinator of the Policy Studies Program at Dickinson College, Carlisle, Pa. He is author of Managing Death and Death Right: Culture, Medicine, Politics, and the Right to Die.
