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The Case of Theresa Schiavo

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Theresa Marie Schindler was born on December 3, 1963, to prosperous and devoutly Catholic parents, Robert and Mary Schindler, in a Philadelphia suburb, Huntingdon Valley. Robert Schindler was a dealer in industrial supplies. Mary Schindler was a full-time wife and mother. They named their first child for Saint Teresa of Avila, the Spanish mystic who believed the Carmelites insufficiently reclusive and so founded a more restrictive order. We have only snapshots of Theresa Marie Schindler’s life before the series of events that interrupted and eventually ended it. According to newspaper accounts published in the wake of those events, there had been the four-bedroom colonial on the leafy street called Red Wing Lane. There had been the day the yellow Labrador retriever, Bucky, collapsed of old age in the driveway and Theresa Marie tried in vain to resuscitate him. There had been the many occasions on which her two gerbils, named after the television characters Starsky and Hutch, got loose and into the air-conditioning unit in the basement.

She gained more weight than she wanted to. The summer she graduated from high school she went on a NutriSystem diet and began to lose the weight. Until then she hung out at the mall. She did not date. She bought her little brother Bobby his first Bruce Springsteen album. She pasted birthday cards into a scrapbook. She read Danielle Steel novels. She saw An Officer and a Gentleman with Richard Gere and Debra Winger four times in one day. She went to a Catholic grade school and a Catholic high school, where the single activity listed in her yearbook entry was “Library Aide,” an extracurricular effort on which she and a friend had settled for the express purpose of having something besides their names in the yearbook. The college application process, in the sense of the crucial competition that it was for many in her generation, an exercise in the marshaling and burnishing of deployable accomplishments, seems not to have entered the picture.

She enrolled in the two-year program at Bucks County Community College, where, in a psychology class during her second semester, she met Michael Schiavo. He was from Levittown. He is said to have been the first person she had ever kissed. At the time they married two years later, in 1984, she was just under twenty-one; he was eight months older. After a honeymoon at Disney World, they moved in with her parents in Huntingdon Valley, then, when the Schindlers decided two years later to move to Florida, preceded them there. They lived first in a condominium the Schindlers had in St. Petersburg. Theresa Schindler Schiavo clerked at the Prudential Insurance Company. She dyed her hair blonde. She lay out by the pool and drank several quarts of iced tea a day. Michael Schiavo, who after his wife’s cardiac arrest would begin and eventually complete studies in nursing and respiratory therapy at St. Petersburg Junior College, took restaurant jobs.

For all the media coverage of Theresa and Michael Schiavo that occurred fifteen years later, during the last days of her life, there appeared very little hard information about what happened on the evening of February 24 or the early morning of February 25, 1990, the hours that marked the onset of the ordeal. Michael Schiavo has said that his wife was already in bed when he came home that evening from the restaurant where he was then working. He went to bed. He woke at five AM, earlier than usual, to hear his wife falling on the floor in the hallway. “For some strange reason that day, I was just taking the covers off, and then she hit the floor,” he told the St. Petersburg Times-Floridian nine months after the fact. He called 911. It has been established that Theresa Schiavo was, at the time the emergency crew arrived, in full cardiac arrest. After seven attempts to defibrillate, or electrically shock the heart into beating normally, a rhythm was restored.

Theresa Schiavo was taken to Humana Northside Hospital in St. Petersburg, where she stayed three months, at first in a coma. We do not know from either the Humana Northside discharge summary or the later coverage how this coma was scored on the Glasgow Coma Scale, which ranks eye, verbal, and motor response on a combined range from three to fifteen, “GCS three” signifying that the patient has no response and “GCS fifteen” that he or she can speak in an oriented way, open the eyes spontaneously, and obey motor commands.

When Theresa Schiavo emerged from coma it was to the generally unresponsive state in which she would remain for the next fifteen years. Different people have called this state by different names. Some commentators have referred to it as “locked-in syndrome,” which it seems not to have been. Complete “locked-in syndrome,” which is sometimes characterized as “living eyes in a dead body” and was the condition described by Jean-Dominique Bauby in The Diving Bell and the Butterfly,1 is identified by tetraplegia (the paralysis of all four limbs), paralytic mutism (an inability to speak), the oculomotor deviation known as lateral gaze palsy, and the inability to breathe unaided. The patient, however, retains the ability to think and reason. “In my case, blinking my left eyelid is my only means of communication,” Bauby, who before the stroke that injured his brainstem had been the editor in chief of French Elle, wrote by blinking to select letters as the alphabet was repeatedly recited to him.

On the major diagnostic points alone, Theresa Schiavo was not tetraplegic and could breathe unaided, but seemed not to have retained the ability to think. Most neurologists have called her condition a “persistent vegetative state,” in which the patient has normal sleep-wake cycles but does not respond. Since the diagnosis of a persistent vegetative state is based on the absence of response, any response from a patient who has received the diagnosis is presumed to be reflexive.

A few neurologists, in what would be the last months of Theresa Schiavo’s life, began to say that her condition could be a “minimally conscious state,” a diagnosis in use only since 2002 to differentiate those patients previously diagnosed as vegetative who can track objects or people with their eyes and seem intermittently able to respond to commands. Early in March, at the request of the Florida Department of Children and Families, which was seeking custody of Theresa Schiavo, she was seen by a neurologist from the Mayo Clinic’s Florida hospital, William P. Cheshire, the director of Mayo’s Autonomic Reflex Laboratory. Some doctors and bioethicists with interests in the matter suggested that, as a conservative Christian, Dr. Cheshire brought a bias to the case, but his affidavit seemed to raise questions not before widely addressed. He noted that the patient had not had a complete neurological examination in nearly three years, had never had such advanced testing as positron emission tomography (PET) or functional magnetic resonance imaging (fMRI), and that in the absence of such examination and imaging there remained “huge uncertainties” about her neurological status.

Functional magnetic resonance imaging in particular has enabled neuroscientists to detect brain activity in patients previously diagnosed as being in persistent vegetative states. According to Dr. Joseph Fins, chief of the medical ethics division at New York Presbyterian Hospital–Weill Cornell Medical Center, one study suggested that as many as 30 percent of vegetative patients studied were in fact minimally conscious. On the basis of the ninety minutes Dr. Cheshire spent with Theresa Schiavo, he suggested that she could well be found to fit the more recent “minimally conscious” diagnosis. He observed that she held his gaze for about thirty seconds, smiled when she heard familiar voices or piano music, and seemed in the changing pitch of her vocalization to be communicating “emotional thought within her brain.” Neurologists who had previously examined her described such responses as reflexive.

Late this past winter, Robert and Mary Schindler petitioned the court for time to allow that an fMRI be done on their daughter, but the request was denied. “One of the Respondents’ affiants,” the order denying the request read, the “Respondents” in this action being the Schindlers,

cautions that fMRI testing is an experimental procedure that has shown promise but is not yet routinely used for clinical purposes and that any fMRI testing should be conducted in an academic setting with ongoing research protocols investigating coma/VS [vegetative state]/MCS [minimally conscious state].

Michael Schiavo, the order continued,

contends that no MRI can be conducted on Terri Schiavo without brain surgery to remove a device that was previously inserted in her brain [a “thalamic stimulator” implanted during an experimental procedure at the University of California Medical Center in San Francisco in 1990] and that such an invasive procedure has not been previously favored.

The denial was based on grounds that the Schindlers had not met the burden, established by an appellate court in 2002, of presenting evidence that new diagnostic techniques or treatment “would significantly improve the quality of her life.”

Much is unknown here. A change in diagnosis might or might not lead to a change in treatment, and a change in treatment might or might not lead to improved response. Any response in such states will be at best intermittent, fitful, like the occasional sparking produced by a lighter with a bad flint. No one who has had even a passing exposure to brain injury can think of neurology as a field in which all questions are answerable. The “prognosis” is arrived at only clinically, after the fact, by observation of what happens. Vegetative patients whose brain injury was traumatic (a fall, an accident, an external mechanical event) are more likely to recover response than those, like Theresa Schiavo, whose injury resulted from a lack of oxygen to the brain. No one knows why. Patients who emerge from coma and show some response can later drop into a less responsive state.

Again, no one knows why. Neurologists can pinpoint the precise location of injured areas, know exactly what the functions of those areas are supposed to be, and still have no idea what actual deficits the patient will or will not experience: every brain, I was told by a neuroscientist at UCLA, is wired differently. The injured brain, moreover, can rewire itself. Neuroplasticity, to a greater or lesser but in each case unpredictable extent, can allow the construction of new circuits, new synapses. Undamaged areas of the brain can assume some of the functions of injured neurons. Whether or not this will occur can be known, again, only by observation of whether or not it does occur. Jean-Dominique Bauby, in The Diving Bell and the Butterfly, wrote that

the evolution of the disease is not well understood. All that is known is that if the nervous system makes up its mind to start working again, it does so at the speed of a hair growing from the base of the brain.

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    Knopf, 1997, translated from the French by Jeremy Leggatt.

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