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About Medicine & Morality

Op-ed from the 12/14/03 edition of the Tampa Tribune.
Reprint with permission from Barbara Olevitch

Schiavo Case Reveals Need To Protect Disabled

By Barbara Olevitch


"Sometimes good law is not enough ...," begins the report of the guardian ad litem for Terri Schiavo, the Pinellas County woman at the center of a legal battle for her life.

Discussing the "enmity" that he believes prevented agreement between Terri's husband, Michael Schiavo, and her parents, Bob and Mary Schindler, Dr. Jay Wolfson relates that the Schindlers have lately maintained "that Theresa is not in a persistent vegetative state, and/or that they do not support the fact that such a medical state exists at all."

The Schindlers" position cannot be characterized as "enmity." Their sense that "persistent vegetative state" is not an ordinary medical diagnosis is correct.

"Persistent vegetative state," a term that was defined in 1972 and became more familiar by the late 1980s, is grouped in the International Classification of Diseases with "Symptoms, Signs and Ill-Defined Conditions."

It arose because some neurologists thought it was their responsibility - even though their understanding of the condition was not complete - to provide authoritative backup for despairing families who wished to remove food and fluids.

To allow certain patients to die, they crafted and publicized provisional standard diagnostic criteria - expecting, through further research, to improve their predictions for patients who met these criteria. In much the same way, the Florida Legislature urgently drafted Terri's Law, intending to rework related statutes later.

The Schindlers are certainly not alone in appreciating the serious problems inherent in using the still-provisional predictive criteria for life-or-death decisions.

Dr. Keith Andrews, writing in the British Medical Journal in 1996, found in a study that out of 40 patients diagnosed as being in a persistent vegetative state, 17 were misdiagnosed and in fact were aware and responsive. That's a pretty high proportion of mistakes! If someone were fishing with a net and snaring 17 dolphins for every 23 tunas, how long do you think he'd be permitted to fish in that location?

This is why advocates for the disabled are so concerned about the Florida
law. It allows patients designated, rightly or wrongly, as being in a persistent vegetative state to have their life supports removed, even in the absence of an advance directive or a willing family member.

There is a very high likelihood that Terri Schiavo is a misdiagnosed patient. If she smiled in response to her mother or said a word even once - both have been reported - she would no longer be in a persistent vegetative state, and all of the dire predictions about lack of improvement wouldn't apply to her.

Patients have emerged from this state, even if they were so severely disabled that change at first went unnoticed, and have continued their improvement over many years.

Wolfson noted "instances" on the videotapes of Terri where she "appears to respond specifically to her mother. But these are not repetitive or consistent." Requiring consistency is a possible interpretation of a 1993 set of diagnostic criteria. This interpretation no longer seems apt, because Dr. Joseph T. Giacino's work with patients he describes as minimally conscious - who are capable of improving and even regaining full consciousness - shows that even they don't respond consistently.

Determining whether a smile is or isn't responsive, furthermore, is unavoidably subjective. No wonder the misdiagnosis rate of persistent vegetative state can be so high.

Wolfson described several possible views of Terri's inner life. An observer who believed that her inner feelings were "fear and perpetual horror" clearly would judge her smile as unresponsive unless proved otherwise, because he would fear condemning her to a horrible existence. In contrast, an observer who believed she was relaxed and aware of the love of those around her would judge her smile as responsive unless proved otherwise, because he would fear condemning her to death.

When the legislators of Florida wrote "persistent vegetative state" into the statutes, defining it as permanent unconsciousness, was it because they thought that even responsive patients who were mistakenly diagnosed as persistently vegetative were better off dead? Not at all.

The lawmakers didn't know that this statute allowing removal of food and fluids would apply to people like Terri Schiavo, who looks exactly as if she's smiling at her mother and probably is! When they found out, they rose up as a group and saved her.

Have they rewritten the statutes yet, taking out the provisions that allow any patient who has been diagnosed as being in a "persistent vegetative state" to be dehydrated without an advance directive or to have his living will activated as if he were dying?

No, they are still relying on Terri's Law, their quick fix, just waiting to see if it will hold.

Terri's Law was an implicit promise to improve the Florida statute. It is time to deliver on the promise and rework the law to protect the disabled.

Why hold our breath to see if Terri's Law is constitutional? Why risk another dehydration crisis? Only by promptly reworking Florida's not-yet-good-enough laws on advance directives can the Legislature give Terri Schiavo and other disabled people more than a shaky reprieve.

Let's take Terri out of the net now before it gets dunked in the water again.


Barbara Olevitch, Ph.D., is a clinical psychologist specializing in the treatment of the seriously mentally ill and author of "Protecting Psychiatric Patients and Others from the Assisted-Suicide Movement: Insights and Strategies."



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Taking a stand against causing death, March 2,2005

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