> An end to it all
> --------------------
>
> The issues raised by the Terri Schiavo case linger and are as complicated
> as life itself
>
> Medical facts are cast aside
>
> By Lennard J. Davis, professor at the University of Illinois at Chicago in
> English, disability and human development and medical education
>
> March 27, 2005
>
> While she may be unable to help herself, Terri Schiavo has been immensely
> useful to just about everyone else.
>
> Progressives see any attempt to keep Schiavo alive as a plot by
> conservative Christians and their Republican allies to push a "right to
> life" agenda. Conservatives, for their part, think that Democrats are
> shoring up their misguided position supporting physician-assisted suicide,
> euthanasia, stem-cell research and abortion.
>
> But how can legislators and citizens make decisions about this case when
> they know little about the medical facts?
>
> The most common misconception is that Schiavo is brain dead or
> comatose--that is, completely unconscious without any chance of recovery.
> In fact, she is not comatose but diagnosed as being in a "persistent
> vegetative state."
>
> This is a state defined as "wakefulness without awareness," and the
> expectation is that there will be no recovery. Such patients may display
> eye movements, laughter, crying, grunting or thrashing.
>
> Yet this diagnosis is not just a simple, cut-and-dried category.
> Persistent vegetative state is a diagnosis made by external observation
> that infers a lack of consciousness.
>
> No brain scan or MRI is used to confirm this neurological diagnosis.
> Family and friends, who spend much more time with the patient, often make
> a very different assessment, asserting that the patient has some minimal
> consciousness.
>
> Similar symptoms
>
> A similar state, called "locked-in" syndrome, has very similar symptoms.
> These patients have full consciousness, yet they cannot move or give a
> sign that they are aware. Often, the only way they communicate is by
> blinking their eyes. The only outward behavior that may separate
> persistent vegetative state from locked-in syndrome is the patient's
> ability.
>
> The most famous of these cases was French author Jean-Dominique Bauby, who
> wrote his memoir "The Diving Bell and the Butterfly" entirely by blinking
> to indicate individual letters of the alphabet.
>
> So it is possible that some people like Terri Schiavo actually may be
> conscious but unable to signal that they are.
>
> Doctors have a way of making us feel that medical definitions are
> absolute. The rationale for starving and dehydrating someone like Schiavo
> is that, because she is in a persistent vegetative state, she will never
> recover. She is doomed to be "wakeful but unaware" for the rest of her
> days.
>
> But in the case of brain damage, things may not be so simple.
>
> The diagnosis of persistent vegetative state was invented in 1972, but its
> utility has been questioned. According to one study, 37 percent of the
> time doctors incorrectly diagnosed persistent vegetative states in
> patients. If the diagnosis in Schiavo's case was mistaken, perhaps she is
> in a minimally conscious state.
>
> A recent study done by doctors at Columbia Medical Center noted that
> patients "who are treated as if they are almost completely unaware may in
> fact hear and register what is going on around them but be unable to
> respond."
>
> Brain scans reveal that the language centers in these patients' brains
> react like those of normal people to familiar voices. Recently, one
> minimally conscious patient who had not talked for 20 years surprised her
> caregivers by beginning to talk.
>
> Another common error is that Schiavo is being kept alive by machinery, and
> disconnecting it would end her life.
>
> In fact Schiavo's body is fully able to carry out all the life processes
> necessary to remain alive--all except the ability to swallow. The feeding
> tube is not some high-tech device, but a flexible, plastic tube that
> permits food to pass to her stomach. Many people with full consciousness
> make use of such an assistive device without thinking they are on some
> high-tech form of life support.
>
> Complex choices
>
> A third misconception revolves around the complex choices people can make
> about end-of-life decisions.
>
> Many people have signed living wills that specify what they want to happen
> should they ever become unable to express their own will. In many states,
> such documents require that you choose and approve a number of options,
> including who will be your guardian and make decisions for you. But these
> choices can be complex.
>
> If you choose to be disconnected from life-support systems in New York
> state, for example, you still have to indicate that you do not wish to be
> fed and further indicate that you do not want to be hydrated.
>
> In Schiavo's case there was no written directive. The court has therefore
> relied on her husband's testimony. Since there are so many end-of-life
> options, however, it is hard to know without written instructions exactly
> what Schiavo meant. Did she mean that she didn't want to be on a
> ventilator? Or did she mean that she wanted her life actively terminated
> (which is against the law in all states)?
>
> It is hard to imagine that she specifically meant that she wanted to be
> dehydrated and starved to death. But maybe so.
>
> Another area of confusion involves how we value life in a persistent
> vegetative state, and whether such life is worth living. It is fair to say
> that most people abhor the idea of being in such a debilitated state, and
> many people say, "I'd rather be dead."
>
> While such feelings are understandable, killing people in any debilitated
> mental or physical state is against the law in the United States. So,
> barring active euthanasia, is it really OK to sidestep the letter of the
> law by letting Schiavo die by indirect means over a couple of weeks?
>
> Death by starvation and dehydration is long, uncomfortable, and
> conceivably inhumane.
>
> Public attitudes
>
> Ultimately, Schiavo's case is most centrally about the attitude of the
> public toward disability in general and severe disability in particular.
>
> When both left and right operate with stereotypes and misconceptions, it
> is hard to see the disability issue straight on.
>
> But death is not a cure to be handed out lightly. This is not a case for
> the left and right to haggle over.
>
> It is more about the limits of our knowledge and the power of the
> Hippocratic oath, which says, "Do no harm."
>
>
> Copyright (c) 2005, Chicago Tribune
>
-- Marta Russell Los Angeles, CA http://www.martarussell.com/