TCS Daily


The Human Rorschach Test

By Sydney Smith - December 4, 2003 12:00 AM

Terri Schiavo, the severely disabled Florida woman at the center of a medical and legal controversy these past months, has become something of a Rorschach test of American life and death values. For some, she's the worst-case scenario of the limits of medical technology -- snatched from the jaws of death only to be left to a fate worse than death. For others, she's the worst-case scenario of medical paternalism -- completely and totally disabled, voiceless, at the mercy of doctors and avaricious relatives, and deserving of every legal protection the law can muster.

It isn't surprising that the Schiavo case has engendered such controversy, or such strong feelings. It is, in many ways, a case that exists in the shadowlands of both medicine and the law.

Here are the facts: At the age of twenty-six Terri Schiavo suddenly and inexplicably suffered a cataclysmic event which deprived her brain of oxygen. Since that time she has been bedridden, unable to swallow on her own, and unable to communicate in any meaningful way with those around her. She left no written record indicating how she would want to be treated in such a situation.

 

In Florida, as in most states, when there is no advanced directive for medical care, the spouse is given complete legal authority to make all decisions. Michael Schiavo felt that his wife's artificial hydration and nutrition should be stopped. Her parents disagreed. Enter the courts, and eventually the Florida legislature.

Under Florida law, a surrogate can only remove treatment if there is no hope that the patient can recover his or her mental capacities, and if the patient is terminal, in the end-stages of a disease process, or in a persistent vegetative state. The Schiavo trials (and there have been many) have touched on every arguable aspect of the case -- whether Michael Schiavo should be the surrogate decision maker, whether Terri Schiavo would have wished to go on living this way, whether there's hope of recovery, and whether she is in a persistent vegetative state. Of all these, one would think that the certainty of her diagnosis would be the least open to interpretation. One would be wrong.

When it comes to understanding the workings of the human mind, the state of the art of modern medicine is just that -- more art than science. The diagnosis of a persistent vegetative state is a clinical diagnosis. That is, it's based on a doctor's interpretation of signs and symptoms rather than any objectively measurable test results. The criteria were established in 1994, by a consensus panel of neurologists in an attempt to minimize the uncertainties inherent in its diagnosis. Patients in a persistent vegetative state are unable to respond to any sort of stimuli in a sustained, reproducible, or voluntary manner. They can't control their bowels or their bladder, but enough of their brain works that their basic neurological reflexes remain intact and they can survive if given nutrition and basic medical and nursing care. They can neither comprehend nor express language. They sleep, they awaken, but they have a total lack of awareness -- of self, of others, and of their environs.

The problem is, how can we be certain that someone who can't communicate also can't comprehend? Or that they aren't aware? We can't. In the few, limited studies that have addressed the issue, the rate of misdiagnosis of the persistent vegetative state hovers around forty percent. The presence or absence of consciousness in another person simply isn't measurable. It is something that we can only infer, and as such it's subject to observer bias. The diagnosis itself is a Rorschach test, as dependent on the observer's beliefs in the meaning of life and death as end-of-life decisions are on a patient's beliefs. (The name itself conveys something of that bias: hear "vegetative," think "vegetable.")

To be sure, thanks to modern technology, there's much about the brain we can observe, but consciousness and being aren't among them. We can measure the brain's electrical activity. We can peer into its anatomy and find damaged areas. We can tell which areas are metabolically active, and which are having a surge in blood flow at any given time. But, for all of that, all we can diagnose with any certainty is when the brain is dead. We're no closer to identifying the seat of consciousness than the ancient Greeks. Which is why there is so much controversy -- medically, ethically, and legally -- surrounding the diagnosis and meaning of a persistent vegetative state.

We've been down this road before, most famously with Karen Ann Quinlan and Nancy Cruzan. In both of those cases, families fought hard for the right to discontinue treatment; treatment that they felt was futile. Today, the Schiavos are fighting equally hard to continue treatment; treatment that so many others feel is futile.

So little and so much has changed in the past ten years. Our science is no closer to understanding consciousness, but our society is more confident that those living in altered forms of it are closer to death than to life. In the era of Quinlan and Cruzan, the burden of proof lay on those who would deny basic care to the severely cognitively impaired. Today, the burden of proof is on those who would continue it. If that isn't a slide down the slippery slope, what is?

 

Sydney Smith is a family physician who has been in private practice since 1991. She is board certified by the American Board of Family Practice, and is a Fellow of the American Academy of Family Practice. She is the publisher of MedPundit.
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