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.
In fact we do not even know that. The brain remains perhaps the last medical frontier. In the case of Theresa Schiavo, all that seemed clear was that a significant amount of neurological damage had occurred during however many minutes she lacked oxygen to the brain. According to The Merck Manual, any more than four to six minutes of such anoxia can result in irreversible brain damage or death. We do not know how many minutes Theresa Schiavo spent in cardiac arrest. It was later generally reported that this arrest was a “heart attack” caused by a potassium deficiency. The potassium deficiency, it was widely suggested, had been caused by what was sometimes described as “bulimia” and sometimes, more generally, as an “eating disorder.”
This suggestion persisted, carrying with it a hint of the disapproval often expressed toward people in unfortunate circumstances who can be suspected to have had bad habits. The “bad habits” serve in such cases to isolate these unfortunate circumstances from our own. Patricia J. Williams, in The Nation, striking this not uncommon note, spoke of
the bizarre events played out in the name of force-feeding Terri Schiavo, a woman whose bulimic aversion to food was extreme enough to induce a massive systemic crisis that left her in what doctors describe as a “persistent vegetative state.”
Theresa Schiavo, in this construct, had for whatever reason played a role in her own demise, meaning that what happened to her need not happen to us.
However comforting it may have been to believe this, the suggestion (no diagnosis exists) of an “eating disorder” appears to have been entirely assumptive, based on no evidence beyond the unexceptional facts that she had some years before gained weight, gone on a diet, and lost the weight. We do know that on Theresa Schiavo’s initial testing the level of serum potassium was 2.0, not only well below the “normal” range, which is 3.5 to 5.0, but also below the level, 3.0, at which cardiac effects may be expected. Bulimia, or any vomiting at all, can cause potassium deficiency. Since other common causes include kidney disorders, colon polyps, and the ingestion of diuretics, laxatives, asthma medications, certain penicillins, or even large amounts of licorice, the lowered serum potassium level on its own does not tell us what led to the deficiency that is believed to have triggered the cardiac arrest.
“What was finally diagnosed as the reason for what happened to her?” Larry King asked Michael Schiavo on CNN on March 21.
“They’re speculating that she had bulimia,” Michael Schiavo said. (Who “they” might be was left unexplored.)
“Did you have any knowledge of that?” Larry King asked.
“No, I did not,” Michael Schiavo said.
“Was she concerned about her weight?” Larry King asked.
“Believe me,” Michael Schiavo answered, as if he was accustomed to talking to people who might not, “she was always concerned with her weight, yes. She was very heavy when she was younger, before I met her.”
The “heart attack” itself was another such doubtful assumption. Whatever caused Teresa Schiavo’s heart to stop, it seems not to have been what came to be generally described as a “heart attack.” Peter Bambakidis, M.D., a Cleveland neurologist who had been appointed by the Florida state circuit court that covers Pinellas County to review the Schiavo case and testify as an expert medical witness, addressed this point in a 2002 evidentiary hearing before Judge George W. Greer:
Q: You concluded that she did have a heart attack, though, correct?
A: No, I did not.
Q: It’s not in your report?
A: No, I don’t believe it is.
Q: What is your understanding of what happened to her?
A: Well, my understanding is that she did have a cardiac arrest.
A: My understanding is further that there seems—it’s still not definite exactly what the cause of the cardiac arrest was.
Q: It was definitely not a heart attack because her enzymes were not elevated, correct?
A: Well, I’m not going to answer that directly. Suffice it to say that the diagnosis of MI was not made or myocardial infarction was not made.
During the period this spring when the spectral presence called “Terri” dominated the national discourse, such areas of confusion between what was known and not known and merely assumed or repeated went largely unremarked upon. Taking a position, which had become the essence of that discourse, demanded impenetrable certainty. There were two entire weeks during which it was possible to hear the Schiavo case debated all day and all night and still not get it straight whether there was, as people were actually shouting at each other on the cable talk shows, “anybody home.” (“You’re wrong, Pat, flat line, nobody home.”) Theresa Schiavo was repeatedly described as “brain dead.” This was inaccurate: those whose brains are dead are unable even to breathe, and can be kept alive only on ventilators. She was repeatedly described as “terminal.” This too was inaccurate. She was “terminal” only in the sense that her husband had obtained a court order authorizing the removal of her feeding tube; her actual physical health was such that she managed to stay alive in a hospice, in which only palliative treatment is given and patients without antibiotics often die of the pneumonia that accompanies immobility or the bacteremia that accompanies urinary catheterization, for five years.
Even after the removal of the feeding tube, she lived thirteen days. The removal of this feeding tube was repeatedly described as “honoring her directive.” This, again, was inaccurate: there was no directive. Any expressed wish in this matter existed only in the belated telling of her husband and two of his relatives (his brother Scott Schiavo and their sister-in-law Joan Schiavo), who testified in a hearing on a 1998 petition that they had heard Theresa express the thought that she would not wish her life to be artificially prolonged. One time she was said to have expressed this thought was when Michael and Scott Schiavo’s grandmother was on life support. “If I ever go like that, just let me go,” Scott Schiavo said that he had heard Theresa say. “Don’t leave me there.” Another expression of the thought, Joan Schiavo testified, occurred when the two women were watching a television movie about a man on a feeding tube: according to Michael Schiavo’s attorney, George J. Felos, what Theresa said was this: “No tubes for me.”
Only in 1997, seven years after the cardiac arrest and a year before he first requested that the feeding tube be removed, did Michael Schiavo first mention these recalled wishes to the Schindlers. In 1992 he had pursued (and finally settled, for approximately $1.1 million after fees) a medical negligence suit against the doctors who had supervised Theresa Schiavo’s infertility treatment, arguing that they had failed to pick up the potassium imbalance. During the course of this 1992 malpractice action Michael Schiavo (who had not yet been videotaped in what seemed to be a legal office explaining that his wife had never wanted to “live on tubes,” never wanted “to be a burden”) was asked how he saw their future:
A: I see myself hopefully finishing school and taking care of my wife.
Q: Where do you want to take care of your wife?
A: I want to bring her home.
Q: If you had the resources available to you, if you had the equipment and the people, would you do that?
A: Yes. I would, in a heartbeat.
Q: How do you feel about being married to Terri now?
A: I feel wonderful. She’s my life and I wouldn’t trade her for the world. I believe in my marriage vows.
Q: You believe in your wedding vows, what do you mean by that?
A: I believe in the vows I took with my wife, through sickness, in health, for richer or poor. I married my wife because I love her and I want to spend the rest of my life with her. I’m going to do that.
Many ordinarily obscured emotions surfaced during those weeks just before and after Theresa Schiavo’s feeding tube was removed. I recall talking one night at dinner to a psychiatric social worker who said that six of her clients were speaking of little else. Among those who did not necessarily see the situation as one that required discussion with a professional therapist, the most common reaction seemed to be what they described as “disgust.” Many people expressed “disgust” with the “carnival.” They expressed “disgust” with the “sideshow,” the “media circus,” the calculated inflammation of anti-abortion sentiment outside the hospice. They expressed “disgust” with the nation’s elected officials, the “self-righteous hypocrites” who were seen as showing an undue eagerness to change the subject, to turn away from those foreign or domestic adventures (“messing around with Social Security” kept getting mentioned) that could seem doubtful to even the most committed supporters. Especially in light of the “Talking Points” memo circulating among Republicans that characterized the Schiavo case as “a great political issue” and “a tough issue for Democrats,” these elected officials were seen, by those polled across the political spectrum, even by evangelical Christians, as “cynical,” “pandering to their base,” trying to reap political benefit by intervening in what was repeatedly described, as if this were a right-to-die case, which it was not, a point that came to be increasingly blurred, as a “personal choice.”
It was perfectly clear that the elected officials in question were in fact trying to reap political benefit. On the other hand there was no novelty in this. Given the ample opportunities for disgust that the same elected officials had offered the country on a range of other issues, this expressed distress with what was essentially a civil rights intervention seemed unusual, excessive, even displaced. There came to seem a considerable investment in keeping this story on the safe ground of political indignation, a refuge seized even by Michael Schiavo. “I think it’s outrageous, and I think that every person in this country should be scared,” he told Larry King about the decision of Congress to ask that a federal court hear the matter:
The government is going to trample all over your private and personal matters. It’s outrageous that these people that we elect are not letting you have your civil liberties to choose what you want when you die. They’re going to tell you, you can’t.
On Nightline, he took this politicized and oddly distanced indignation a step further, offering viewers an action line: “You better call your congressman, because they’re going to run your life.”
There was a good deal of domestic pathology involved here, uncertain personal ground, which may have been one reason people preferred to see it as a political story. There was the understandable but ultimately fatal acrimony between the Schindler and Schiavo families. There was the unassuagable grief of the parents, the fierce parental need to construe any abandonment of hope as a betrayal of their first-born child. There was the puzzlingly histrionic insistence of the husband, who for at least ten years had been involved with the woman he called his “fiancée” and with whom he now had two children, that the Schindlers could have no reasonable interests in their daughter’s treatment or ultimate fate. There was the continuing bitterness of the Schindlers over Michael Schiavo’s decision, in April 2000, to move his wife from the last in a series of nursing homes to the Woodside Hospice, part of the Hospice of the Florida Suncoast (“the Florida Suncoast” is essentially the west or Gulf coast of central Florida), an institution for which George J. Felos, who was by then Michael Schiavo’s attorney, had served as chairman of the board.
An order was already in place authorizing the removal of the feeding tube; from the point of view of the Schindlers, the move to a hospice facility, for which insurance eligibility requires certification by a doctor that the patient has only six months to live and in which the patient relinquishes all treatment other than that for pain, could be meant only to facilitate that order. The Schindlers had asked the court to order their daughter returned to a nursing home; then, after Michael Schiavo agreed to notify them if he decided to withhold treatment, they withdrew the request. In fact Michael Schiavo had tried to withhold treatment for an infection as early as 1994. The Schindlers tried to remove his guardianship, their main legal recourse throughout. (“When you made the decision that you were not going to treat Terri’s infection, and you were going to, in effect, allow her to die, did you think that you had any obligations to tell her parents?” he was asked during a deposition for one such guardianship action. “To answer that question,” he said, “I probably would have let them know sooner or later.”) In this instance, the nursing home had overruled his instructions to withhold treatment. The Schindlers had dropped their petition.
None of this is surprising. What happened to Theresa Schiavo is the kind of accident that breaks families in every possible sense. Were a novel to be written about the situation we would expect it to turn on the years during which an immature wife and her equally young husband were to one degree or another supported by the wife’s parents. “Control issues” would be mentioned, and in fact they were: it was said that Michael Schiavo’s need for control was such that he kept track of the mileage on Theresa’s Toyota Celica. An insensitivity to the disposition of the absent wife’s most sentimental property would be cited, and it was: asked during a 1993 deposition what he had done with Theresa’s jewelry, Michael Schiavo, astonishingly, said this: “Um, I think I took her engagement ring and her…what do they call it…diamond wedding band and made a ring for myself.” Marital unhappiness would be alleged, and it was: Bobby Schindler, according to The New York Times, said that his sister had taken him into the bathroom of a restaurant one night and broken down in tears. “She said her marriage was falling apart, but she didn’t have the guts to divorce him.” A friend with whom Theresa worked at the Prudential, Jackie Rhodes, was reported by The Washington Post to have spoken to an unhappy Theresa on the day that preceded the 911 call. From the Post:
The last time she spoke to Terri, Rhodes says, she had just gone to get her hair done. Terri was toying with going back to her natural color, so Rhodes called that Saturday to ask what she had decided. Terri, Rhodes said, was in tears; she and Michael had had a fight over the cost of the salon visit.
In the bright light shed by family disaster, few marriages look good. Old resentments swamp any possibilities for empathy. All parties look for an explanation, someone to blame. In this particular family disaster the opportunities for blame got magnified, blown up not only by the Internet postings and e-mail alerts of conservative action groups (among those adopting the case as their own were National Right to Life, Focus on the Family, the Family Research Council, the Traditional Values Coalition, and Operation Rescue) but by the counterreaction to those efforts. Allegations got made from which there was no turning back. Calls got made to the Florida Department of Children and Families, which investigated eighty-nine complaints dating back to 2001 (including one that Theresa Schiavo’s parents were selling videotapes of her on-line for $100) and found no evidence that she had been or was being abused or exploited by either her parents or her husband.
Accusation was nonetheless the air all parties were by then breathing. There were the frequently repeated suggestions circulating on the Internet (based on what, it was hard to say) that the paramedics responding to the initial 911 call had thought the circumstances “suspicious,” that the police had been notified, and that the police records had been suppressed. In fact the routine incident report of the St. Petersburg police noted that “the police were called because of her age and because the situation seemed unusual” but that “there were no signs of a struggle or anything that would indicate that a crime had been committed,” that no illegal drugs and only trace amounts of alcohol had been detected in Theresa Schiavo’s system, and that examination of her head and face showed “no signs of trauma.”
There were the suggestions having to do a 1991 bone scan done on Theresa Schiavo at Manatee Memorial Hospital in Bradenton, Florida, a year after the cardiac arrest. The scan had been ordered by James Carnahan, M.D., a rehabilitation physician who saw patients at the Mediplex Rehabilitation Center in Bradenton, where Theresa Schiavo, then at Mediplex, was said to be expressing unexplained pain during physical therapy. The report on this scan had been dictated by William Campbell Walker, M.D., a radiologist at Manatee Memorial who later testified in a deposition taken for a 2003 hearing. He was asked what the words meant that appeared below the date on the scan report: “Indication: Evaluate for trauma.”
A: Well, in the best of all possible worlds when we are asked to produce an imaging study, there’s a question that’s been asked for which we are being asked to provide an answer…. So if somebody comes in with a history that says “Closed head injury,” belongs to Dr. Carnahan, for example, who’s a known rehab doc, and the indication that was given us is “evaluate for trauma,” then our mind-set is to look for those things that are most likely related to trauma and to possibly give some additional possibilities if we don’t see something that fits what we expect.
The scan, according to Dr. Walker, did show extensive evidence of the kind of remineralization that indicates previous trauma. Among the affected areas were several ribs, both knees (the 1990 discharge summary from Humana Northside notes a “right knee fusion” that “she developed after she was transferred to the Progressive Care Unit”), both ankles, what appeared to be a previous bone bruise on the upper front of her right leg, and a compression fracture of her spine.
Q: Is there any way to tell how old that fracture would be?
A: Well, as I’ve alluded to, the bone scan gives some suggestion of that.
Q: More recent rather than less recent?
A: Correct. Typically in trauma the rule of thumb is that a traumatic fracture is not active on a bone scan after 12 to 18 months…. Now, bodies being very variable, there’s a lot of variation there, but that’s the typical rule of thumb. So if a fracture shows up active on the bone scan, then one makes the presumption that it is relatively recent; i.e., within 18 months….
Q: The report goes on to say, “The presumption is that the other multiple areas of abnormal activity also relate to previous trauma.”
A: That’s what it says.
Q: And, again, that relates to the fact that Dr. Carnahan is a rehab physician, that you were asked to evaluate for trauma?
A: And the pattern of activity is fairly typical of multiple traumatic injuries of relatively recent origin.
Q: I realize you can’t assign a cause to these injuries that you picked up in this report. But typically in your experience, what would be the causes of this pattern of abnormality?
A: In somebody her age, an auto accident is by far the most typical cause.
Q: Assume that she was not in an auto accident but that she had suffered an anoxic or hypoxic encephalopathy type of injury from a cardiac arrest and had been bedridden for a year at this point. What might account for these abnormalities?
A: In my knowledge, that type of injury would not account for this pattern of abnormalities.
George J. Felos, the Florida attorney to whom Michael Schiavo turned for representation in this matter, was not perhaps the ideal personality to locate some common ground on which both his client and the Schindlers could stand. At the time when he fell into the first of what he called his “right to die” cases, in the late 1980s, George Felos was at a point when, he wrote in his 2002 Litigation as Spiritual Practice,
…I found clients, at best, an unwelcome distraction from my all-consuming spiritual practice. Each morning I eagerly awoke at four-thirty for three or four hours of yoga and meditation. The office felt painfully mundane to me and for good parts of the day there I would devour scripture. At home, after making dinner and putting my son down for the night, I would consume spiritual books of every sort and persuasion, then practice more yoga and meditation before bed. I considered most talk, other than of God and Spirit, inconsequential.
For anyone living with me this would have been more oppressive had it not been for the deep passion and transformative energy that was expressing itself through me.
The case that seemed to at least channel if not exactly dispel this mood involved a client, Doris Herbert, who was the guardian of and sole heir to a stroke-damaged cousin, Estelle Browning. Mrs. Browning was being kept alive in a nursing home via a nasogastric feeding tube. Mrs. Herbert, in accordance with the wishes expressed in a “living will” signed by Mrs. Browning before her stroke, wanted the feeding tube removed. Florida at that time permitted the termination of feeding only for patients who were either facing imminent death or in an irreversible coma or vegetative state. Mrs. Browning was neither. Felos tells us that before taking the case he hesitated (“We would never absolutely know if Mrs. Browning indeed retained, underneath that impaired exterior, cognizance of her dilemma. Did I want the responsibility of implementing a choice that perhaps was no longer hers?”), but finally agreed to see Mrs. Browning at the nursing home.
His description of what he saw there might seem, to anyone who has actually observed tube feeding, on the lurid side. There was the “plastic sack half filled with sickly beige-looking fluid,” not the “homogenized ham sandwich” the lawyer feared we might mistakenly imagine when we heard the word “feeding” but “an amalgam of chemicals in a fluid delivery system registered as a drug with the FDA.” There was the plastic tube that “snaked down” from the sack into Mrs. Browning’s nose. There was the “unbearable” (in Mrs. Browning’s case hypothetical) discomfort. There were the “digestive and excretory problems” (also hypothetical) that could ensue, the “frequent vomiting.” There at the bedside he tried to meet Mrs. Browning’s blank gaze, waiting for “some sign.” No sign was forthcoming. Nonetheless he remained, “sensing that my question would somehow be answered before I departed.” In a chapter called “Soul-Speak,” he described what happened next:
…I felt my mind relax and my weight sink into the ground. I began to feel light-headed as I became more reposed. Although feeling like I could drift into sleep, I also experienced a sense of heightened awareness. As Mrs. Browning lay motionless before my gaze, I suddenly heard a loud, deep moan and scream and wondered if the nursing home personnel heard it and would respond to the unfortunate resident. In the next moment, as this cry of pain and torment continued, I realized it was Mrs. Browning. I felt the mid-section of my body open and noticed a strange quality to the light in the room. I sensed her soul in agony. As she screamed I heard her say, in confusion, “Why am I still here…why am I here?”
He took the case. (The exact significance of the Alien moment, the part when Felos felt the midsection of his body open, goes unexplained in Litigation as Spiritual Practice.) A probate judge denied the request to terminate Mrs. Browning’s feeding. A story was pitched to a local paper. “We had contacted the St. Petersburg Times, a fairly well-respected paper with Tampa Bay’s widest circulation,” is how this was put. The St. Petersburg Times ran a Sunday feature, “When Living Wills Fail.” Letters to the editor were written. National right-to-die organizations lobbied the Florida legislature. Six months later, Felos wrote, “my client had become a cause celebre and this case the spearhead of a social movement.” He was undeterred by a gubernatorial veto on legislation meant to allow the removal or refusal of feeding tubes in cases when the patient had so expressed this wish. The day after the veto, on July 4, 1989, a network news crew happened to “find” Felos at his office. “They ended up coming over for some taping,” he wrote, “and there I was on the holiday news—Mrs. Browning’s white knight, stalwart at his covered desk, intently crafting her plea of last hope to the [Florida] Supreme Court. Did I love it!”
“A few days later,” Felos received a call from Mrs. Browning’s primary physician saying that she had begun the irregular Cheyne-Stokes breathing that precedes death. The case, then, might have seemed to some about to resolve itself, although not to Felos. On July 14, he finished the brief to the Florida Supreme Court. Midway through the evening of July 16, he received word that Mrs. Browning had died. The next day at noon he held a press conference. “Mrs. Herbert and I agreed to pursue the case to its final decision,” he explains in Litigation as Spiritual Practice, “and we used the conference to press our cause in the court of public opinion.” The final decision, which came down in 1990, extended what was allowed by Florida’s living will statutes to include the termination of tube feeding, a victory for Felos. “Within a year or so, families were routinely able to remove feeding tubes from patients like Mrs. Browning,” he wrote. “Lawyers weren’t needed, so my success happily proved to be the bane of my newly developed specialty, although I still do get the occasional right-to-die case that stretches the envelope.” It would be the case of Theresa Marie Schiavo that sufficiently stretched the envelope to return George Felos to the court of public opinion.
There appeared in the course of this case many discussions of the separation of powers, analyses of the proper role of the legislative and judicial branches of the government. (The role of the executive branch, since the President’s sole contributions were the interrupted-spring-break and pajama-signing tableaux, did not substantively enter the discussion.) The case was seen by some on the right as validation of their conviction that the judiciary was out of control. A majority of Americans, on the other hand, saw a gross example of legislative opportunism, a clear demonstration of the power of the religious right to influence legislation, a threat most specifically to pro-choice protections in the matter of abortion and more generally to the privacy rights embodied in the Constitution itself.
These arguments seemed necessary, but they also seemed, if not exactly an evasion, not quite the beating heart of the matter at hand. On each side of the debate, the convictions that the Schiavo case was seen to validate were prior convictions, old stories, rendering the discussion déjà vu, a hermetic reiteration of familiar griefs with and outrages of our political process. What might have seemed a central argument in this case—the ethical argument, the argument about whether, when it comes to life and death, any of us can justifiably claim the ability or the right to judge the value of any other being’s life—remained largely unexpressed, mentioned, when at all, only to be dismissed. Discussions of whether Theresa Schiavo’s life was worth living slipped without segue into reiterations of her “prognosis,” her chances for “recovery”: into judgments, in other words, and fairly uniformly negative judgments, about the value of a gravely damaged life. “I mean, at this point, for fifteen years, she’s been this way,” a caller on Larry King Live said to George Felos. “She has no quality of life. Wouldn’t it be better for her to not continue living in this condition?”
Of the many who commented on the case, Felos himself, curiously, came closest at this point to acknowledging what might have seemed the question at its center. “Terri doesn’t have any cognition, Larry,” he said to Larry King. “Quality of life is one of those tricky things because it’s a very personal and individual decision. I don’t think any of us have the right to make a judgment about quality of life for another.” He was nonetheless conducting a case that rested on just such a judgment, a contradiction he elided by reverting to that case’s central line: “I think the decision should be made based upon what that particular person wanted or didn’t want.”
In fact any notion about what Theresa Schiavo wanted or did not want remained essentially unconfirmable, notwithstanding the fact that a Florida court had in effect accepted the hearsay assertions that she had said, at one point, in reference to her husband’s dying grandmother and at another while watching a television movie about someone with a feeding tube, “no tubes for me.” (Imagine it. You are in your early twenties. You are watching a movie, say on Lifetime, in which someone has a feeding tube. You pick up the empty chip bowl. “No tubes for me,” you say as you get up to fill it. What are the chances you have given this even a passing thought?) Most commentators nonetheless seemed inclined to regard Theresa Schiavo’s “directive” as a matter of record, even as they undercut their own assumption by reminding us that the “lesson” in the case was “to sit down tonight and write your living will.” Living wills, it was frequently said, could be “Terri’s legacy.”
There was considerable fuzziness here, not least in the reverence accorded the “living will,” which seemed increasingly to be another of those well-meant and seemingly unassailable ideas that do not quite work the way we are encouraged to think they work. The chances of being admitted conscious to a hospital without being pressed to produce a living will have become virtually nil, yet any “living will” prepared in advance (as in “advance directive,” exactly the document we are pressed to produce) requires us to make specific medical decisions about situations we cannot conceivably anticipate. According to studies cited last year in the Hastings Center Report by a medical researcher and a law professor at the University of Michigan, Angela Fagerlin and Carl E. Schneider, almost a third of such decisions, after periods as short as two years, no longer reflect the wishes of those who made them. The “health care proxy” or durable power of attorney, through which we assign someone we trust to make the decisions we can no longer make, is the better document, but it optimistically presupposes that we will each have with us at end of life “someone we trust.”
The further problem with such directives is that they can be construed as coercive: no one wants to be a “burden.” Few of us want to be perceived as considering our own lives more important than the ongoing life and prosperity of the family. Few of us will sit with a husband or wife or child in a lawyer’s office or a doctor’s office and hesitate to sign the piece of paper that will mean, when the day goes downhill, the least trouble for all concerned. For all the emphasis on the importance of “choice,” the only choice generally approved by the culture is to sign the piece of paper, “not be a burden,” die. Ronald Dworkin, in the meticulous discussion of euthanasia and the right to die that he undertook in Life’s Dominion, pointed out that the person whose care is expensive or burdensome becomes especially vulnerable to such perceived pressure, giving “autonomy” another dimension altogether:
He might prefer that a doctor not even raise the question of whether he would like to consider dying with medical assistance; he might prefer that the question never arise, or that he not even have the right to request death.2
Most of us find ways to avoid contemplation of this. Few of us could afford to think of what was happening to Theresa Schiavo as anything but her “personal choice,” a reasoned decision that she alone had at some point made. Many, accordingly, saw this as a case about the “right” to make their own decisions, the right, as one put it, “to have control over my own life and death.” The idea that life guarantees us such a right to “control,” or personal autonomy, has become the accepted rational, or secular, view. There can be, for those of secular mind, no sane disagreement. Once we had recast the case of Theresa Schiavo as one involving the right to die, then, there could be, from the “rational” or secular point of view, only one correct conclusion: that if she had expressed beyond any possibility of doubt a desire not to have her life prolonged in the condition she was now in, she had the “right” to have her feeding tube removed, which was to say the right to control over her own life and death.
As we have seen, the record showed no such indisputable expression. Yet even if we had managed to convince ourselves that this case involved the right to die, a problem remained. No one even casually exposed to religious teaching believes any such right exists. “So teach us to number our days,” the Episcopal litany asks, “so that we may apply our hearts unto wisdom.” This is a prayer for the wisdom to accept that death is inevitable, not a plea for control over its timing. “Control” itself, when it comes to the natural processes of life and death, is seen as an illusion, an error we learn through life to relinquish. This is by no means a view confined to Christian fundamentalists. It is a view shared by anyone whose ethical principles or general idea of how life works have at any point been touched by any of the world’s major religions.
That this was a situation offering space for legitimate philosophical differences seemed obvious. Yet there remained, on the “rational” side of the argument, very little acknowledgment that there could be large numbers of people, not all of whom could be categorized as “fundamentalists” or “evangelicals,” who were genuinely troubled by the ramifications of viewing a life as inadequate and so deciding to end it. There remained little acknowledgment even that the case was being badly handled, rendered unnecessarily inflammatory. There was an insensitivity in the timing of the removal of the feeding tube, which took place on the Friday before Palm Sunday, meaning that the gradual process of dying coincided with a week that for Christians has specifically to do with sacrificial suffering and death. “Oh come on,” someone said when this was mentioned on a cable show. There was a further insensitivity in the fact that the tube was removed at all. If the sole intention is to terminate feeding and hydration, there is no need to remove a gastric feeding tube. All anyone need do is stop plunging the formula into the tube. Hospitals routinely leave gastric tubes in place long after patients have progressed to oral feeding, because any later need to replace the tube (after the incision has begun to heal and scar tissue to form) can be difficult and require surgery. In this case, in the absence of some unusual circumstance that remained unreported, the sole purpose of actual removal would seem to have been to make any legally ordered resumption of feeding difficult to implement.
These were symbolic points, messages only, but messages make things happen. It was the physical removal of the tube that led to the perceived inexorability of the countdown. It was the convergence of that countdown with the holiest week in the Christian calendar that exacerbated the “circus,” the displays of theatrical martyrdom outside the hospice. It was the ability to dismiss the scene outside the hospice as a “circus” that made the case so ready a vehicle for the expression of “disgust.” Old polarizations took over. Differences became intolerances. Before the end of the first news cycle, those who believed the removal of the feeding tube to be a morally correct decision were being referred to as “murderers,” and those troubled by the decision, even those of no perceptible religiosity, as “fundamentalist freaks,” “evangelical mullahs.”
Some of what made the case so toxic was clear. The general claim those opposed to the termination of feeding seemed to be making, for the absolute value of life, could be applied as well to fetuses. (It could also be applied to the death penalty, but the politics of the pro-life movement have not encouraged this seamless-garment approach.) Yet this specific case, which had to do with whether a healthy woman whose brain was damaged to a catastrophic but still unestablished extent should or should not continue living, was never about abortion alone. It had at its core a virtually unthinkable but increasingly urgent question, one that few on either side of the debate wanted to address aloud.
The question began with the different ways in which we define a life worth living, but it did not stop there. The question had ultimately to do with whether or not there could be occasions when the broad economic and ethical interests of the society at large should outweigh any individual claim to either the most advanced medical attention (which Theresa Schiavo, outside the one procedure at UCSF in 1990, did not have) or indefinite care. This was the question no one on any side of the debate wanted to hear. This was the question conveniently muffled by talk about “right-to-die” and “murderers” and “mullahs,” about the “freak show,” the “circus.”
On the day Theresa Schiavo finally died it seemed clear that the unthinkable question could for the time being remain unthought. Freed of the need to avoid confronting the presence of an actual moral dilemma, all sides could reassume their usual fencing positions. All sides could imagine that by exposing the errors of the opposition, they had advanced the public dialogue. “This is going to be an all-out culture war,” someone said enthusiastically on MSNBC that evening. “Mr. Schiavo’s overriding concern here was to provide for Terri a peaceful death with dignity,” George Felos had said when he appeared before the cameras that day. “This death was not for the siblings, and not for the spouse and not for the parents. This was for Terri.” He had gone on to explain that those present in the room to witness the death that was for Terri (her brother and sister, who were with her earlier that morning, had been ordered to leave the hospice at the request of her husband) were himself, his associate Deborah Bushnell, Michael Schiavo, and Michael Schiavo’s brother Brian, who that evening would swear on Larry King Live that he could never forgive the Schindlers for what they had said about his brother and if anybody didn’t believe his brother had fulfilled Terri’s wishes, “they can pound sand.”
Meanwhile, on MSNBC, John Fund of The Wall Street Journal was being asked to assess “the political fallout” from the death with dignity that had taken place that morning in the presence of the husband who wanted the dying woman dead, his two lawyers, and his hothead brother. “We’re twenty months to the next election,” John Fund said, “so I think the political impact will be limited.”
Knopf, 1997, translated from the French by Jeremy Leggatt.↩
Life's Dominion: An Argument About Abortion, Euthanasia, and Individual Freedom (Knopf, 1993), p. 190.↩