In extraordinary session in the wee hours last Monday, Congress passed a bill to give jurisdiction over Terri Schiavo's life to the federal courts. That move trumped two decisions by the U.S. Supreme Court to decline launching a new round of inquiries into the medical and legal questions surrounding her.
Mrs. Schiavo suffered massive brain damage 15 years ago when, at the age of 26, her heart stopped beating. That event left her brain deprived of oxygen for an extended period. Since 1990, she has been in what medical literature calls a "persistent vegetative state" (PVS). Higher brain function has ceased, and a CAT scan more than two years ago documented the atrophy of her cerebral cortex.
PVS is not a diagnosis created for Mrs. Schiavo but has been used for years to identify persons with severe neurological impairment. Some diseases and accidents leave patients comatose and essentially non-responsive. Other patients, such as Mrs. Schiavo, are not comatose but may spontaneously move their limbs, experience wake-sleep cycles, and make sounds. Their eyes may open in response to external events.
PVS persons may occasionally grimace, cry, or laugh. As with coma patients, however, there is no cognitive engagement of their environment. People who have no experience with such persons – and persons with emotional attachments to them – typically find it difficult to accept that he or she lacks the ability for rational thought or conscious expression. Random moves and noises or responses to external stimuli are counted as signs the person is "still there."
Because there is no single, unquestioned quantitative test for PVS (e.g., brain scan, EEG, etc.), the diagnosis is typically made over a period of time during which a patient is observed carefully. The classic legal and ethical case of PVS is Karen Anne Quinlan. Long-term preservation of these persons may involve a range of interventions from hydration and feeding tubes to breathing devices to electrical stimulation of heartbeat.
I have had the experience of counseling many individuals and families through the agonizing process of deciding whether to extend or terminate life support for PVS patients. In some cases, the persons have been older and had suffered major strokes. In others, the victims had sustained major brain trauma from vehicle accidents, blunt-force assault, or gunshot wounds.
I have also had the personal experience of making the decision not to hydrate or feed a woman whose degenerative brain disease finally made it impossible for her to think, recognize people, or communicate. The decision was filled with the same angst everyone has felt when faced with a pull-the-plug decision about life support. That patient was my mother.
As with most people in their twenties, Mrs. Schiavo had not documented her wishes not to be kept alive under the present circumstances. Her husband, Michael, says she communicated her wishes to him more than once. But her parents refuse to accept his account. Seven years and 19 judges into their bitter family wrangling, the judicial system said it is acceptable to discontinue life support and to remove the feeding tube that has been keeping Mrs. Schiavo's body functioning.
Not only has the Florida legislature substituted its judgment for the process that has been playing out, but now the U.S. Congress has acted in similar fashion. Ironically, a coalition of conservative religio-political groups has pushed for this intervention – after howling for years about the dangers inherent when lawmakers take it on themselves to intervene on organ donation, abortion rights, or what constitutes appropriate medical treatment for a terminally ill child.
The long-standing ethical principle of patient autonomy has been stood on its head by all this. The propriety of medical decision-making repeatedly affirmed by state and federal courts has been set aside. And there is certainly no good reason to think the Schiavo case will not be copied by other conflicted families, bright lawyers, publicity-seeking politicians, and money-raising preachers.
Not only physicians but the rest of us are smart enough to know the difference between protecting, enhancing, and empowering a human life with reasonable hope of recovery and merely prolonging the process of dying. Skill and technology that do the former are admirable and ethical; the same skill and technology used for the latter are unnecessary and ill-advised.
Death is not always The Ultimate Enemy and is not always to be resisted. The real enemies to the patient are disease, trauma, degeneration, and pointless pain. Proxy decision-makers are able to take these things into account in a way persons in a persistent vegetative state cannot. The emotional grasping for straws that happens with a mother or son or sibling attending someone in PVS does not change the awful reality at hand.
Maybe a key issue here is our common insensitivity that fails to see that what is best possible treatment for a person lacking higher brain function is not always the most treatment possible. The idea that an emotional observer’s faint hope of another's recovery can trump peer-reviewed medical judgment under extensive court scrutiny over years is irresponsible.
Death is sometimes an ally instead of an enemy. Perhaps death itself needs to be reconsidered by all of us. It is not an absolute evil. It is sometimes an instrumental good for those without reasonable hope of recovery. Sometimes the real evil lies in forcing someone to endure existence that is no longer really life.
Regardless of your take on this controversial case, your most responsible personal reaction to it is to document your own wishes about end-of-life decisions and then to share it with those closest to you.
(Rubel Shelly holds a doctorate in philosophy from Vanderbilt University and teaches and writes in the field of medical ethics.)