During the tumultuous final weeks in the life of Terri Schiavo, the young woman who died in a Florida hospice in April, press reports in the nation’s media typically focused on the bitter conflicts among members of her family over her treatment, disagreements among consultants over her state of consciousness, and the increasingly intense arguments in legislatures and the courts over her guardianship. Since her death, the case and the story of her death and dying have been mined for their bearing on our ongoing culture wars and for the debate over the place of “values” in our politics. In particular, the seeming failure of the Republican leadership to rally legislative support in favor of keeping her alive has been seized upon as evidence of the Right’s overreaching, and as a lesson in the ironies of ideology. In the words of a writer in the New York Times Magazine, “the heirs to Goldwater and Reagan seemed to forget how they came to control the values debate in America in the first place: not by interfering in the moral choices of families but by promising to stop government from doing exactly that.”
Many a hidden assumption lurks in that statement, not least concerning the (assumed) wishes of the dying woman herself. It is worth reminding ourselves, moreover, that she succumbed in the end by being deprived of food and water by order of the courts—which is to say, by order of government. But in what follows I want to concentrate on another, neglected aspect of this entire dismal episode.
Conspicuously missing from the chorus of voices arguing over the meaning and implications of the Schiavo case have been the views of a class of people with a uniquely relevant body of experience and insight: namely, the doctors and nurses who customarily provide care to patients like Terri Schiavo. As a result, few people appear to have grasped that the way she died was most unusual. That, instead, it has been widely understood to be not only a proper but also a perfectly commonsensical way to die, a way approved of by most doctors and nurses, can only be explained by a deep change that has taken place over the last decades in our thinking about how to care for the helpless and the disabled among us.
Let us begin with the published facts. In 1990, when Terri Schiavo was in her mid-twenties, she suffered a cardiac arrest that produced a severe cerebral anoxic injury—anoxia being an abnormally low amount of oxygen in the body’s tissues—and coma. From this coma she emerged gradually, settling for the next fifteen years into an impaired state of consciousness. She could swallow, breathe, sleep, and awaken without assistance, and could react to sudden sounds with a glance, or to pain by grimacing or groaning. But she was apathetic to inner needs and external events. She was mute, mostly immobile, incontinent, psychologically blank.
For the last several years, Terri Schiavo was being treated in a hospice for terminally ill people. There she received basic nursing care for her bodily needs—she was bathed and turned on schedule—while nutritious fluids were supplied through a tube that had been inserted through her abdomen into her stomach during her earlier treatment for injury. Because of her immobility and apathy, she gradually developed muscle contractions that twisted her limbs and body into a fixed contorted posture. She suffered frequent bedsores, and, with poor oral hygiene, her teeth rotted. In this state she was sustained by the regular attention of a devoted staff and family, being financially supported by money her husband Michael had gained for her through a malpractice suit.
And so she would have remained—alive and physically stable, giving off a few signals that were possibly reflexive but were believed by some members of the hospice staff and her family to represent modest signs of awareness of her surroundings—until, within a period of years, an infection, a blood clot, or a cardio-respiratory difficulty would bring her life to an end. What changed in this situation was not her physical condition but her husband’s mind.
He, her legal guardian, had at first battled for her care and support, but had gradually lost hope of her further recovery. He first signaled his new attitude when he balked at permitting antibiotic treatment for a recurring bladder infection. Although dissuaded on that occasion by the nursing staff, he eventually began to demand that they stop all sustaining treatments, including the gastric tube that provided nutritious fluids or any feeding of his wife by spoon or cup.
The other parties, however, were not won over to Michael Schiavo’s view that Terri was beyond hope of recovery. Instead, her parents launched what became a long legal fight with him for her guardianship. Their own intention was to continue her care in the hospice. At the very least, they wanted to feed her by mouth as one would any helpless person.
Through a series of court battles, legislative enactments, and executive mandates, the husband’s right of guardianship was upheld, the gastric tube was removed, and all—hospice staff, parents, siblings, onlookers—were forbidden by court order to give her food or drink orally. Even a chip of ice to relieve the pain of a parched mouth and throat was judicially prohibited, and local sheriffs were alerted to prevent it. Within thirteen distress-filled days, she died of dehydration.
What other factors are relevant here—laboratory data, clinical diagnostic opinions, expressed views to the extent we have been informed of them?
Terri Schiavo’s initial cardiac arrest, so rare in a young person, had been provoked by a morbidly low level of potassium in her blood—an unusual metabolic event unless the person has been losing potassium through persistent vomiting, diarrhea, or diuresis (increased discharge of urine). The plausible diagnostic explanation was that she was suffering from bulimia nervosa, and had been voluntarily and regularly vomiting to control her body weight.
The injury to her brain was demonstrably extensive. The electroencephalogram (EEG) was grossly abnormal, and typical of a patient with severely impaired consciousness. In 2002, a computer-activated tomogram (CAT scan) of her brain showed extensive cavities of dead tissue in both cerebral hemispheres, and spotty islands of loss in the band of cerebral cortex remaining around the cavities. But no functional assessment of her surviving cerebral tissue was performed by means of magnetic-resonance imaging (MRI) or proton-emission tomography (PET). The absence of such assessments is surprising. Especially if done serially, they would have demonstrated whether any neural activity persisted in the band of cortex around the cavities and whether any of this tissue was recovering over time.
Terri Schiavo was examined by qualified neurologists. Most of them concluded that she fit into the rather amorphous group of severely brain-injured patients defined as being in a “persistent vegetative state” (PVS). This diagnostic category encompasses individuals with cerebral diseases of various kinds who, though only dimly wakeful, retain the life-sustaining functions of respiration, blood circulation, and metabolic integrity.
It is perhaps because such patients display so lowered a state of vigilance that, in striving to define their condition, neurologists lighted upon a metaphor contrasting vegetation with animation. I remember teasing the admirable clinician who first coined this term that I had seen many patients but few carrots sleeping, waking, grunting, or flinching from pain. Although the term “vegetative” does distinguish what is lost from what remains in such a patient’s capacities, it can also have the unfortunate effect of suggesting that there is something less worthy about those in this condition.
As for the adjective “persistent,” it is perfectly precise, and makes no prognostic claim (as would, say, the term “permanent”). It simply describes the patient’s history. What we know from experience is that, as with most neurological impairments, patients “persisting” in this state of blunted consciousness for more than eighteen months are generally unlikely to recover.
The neurologists who coined the diagnostic category PVS did so out of the best of clinical motives. In particular, they wanted to distinguish it from the “brain-dead” state, where no functional capacities—to breathe, to swallow, or to respond—remain. With “brain death,” a patient evinces no response to any stimulus. Brain monitors show no activity. Heart and viscera can carry on their automatic activity only with the aid of mechanical, ventilator-driven respiration, and will cease when it is discontinued.
By definition, then, PVS is not death hidden by machinery. It is human life under altered neurological circumstances. And this distinction makes all the difference in how doctors and nurses think about it and treat its sufferers.
The phrase “life under altered circumstances” encompasses every human sickness and disability. It also speaks to what is entailed in the professional art of medicine—the art, that is, of identifying, differentiating, curing, rehabilitating, defending, and, in the words of the Hippocratic oath, “benefiting” the sick. Given that doctors and nurses naturally align themselves with life, and are trained to care for whatever life brings, including “life under altered neurological circumstances,” it is only to be expected that they would reject and shrink from actions that aim to kill. Exactly how they come to that civilizing point of view in their training to become doctors and nurses is a story unto itself.
The education of doctors and nurses is an interweaving of related but essentially distinct pathways of experience. One pathway comprises accumulated scientific and technical knowledge of the laws of nature. The other pathway is made up of extended, one-on-one experience with patients. This begins early as, with guidance from the masters of their craft, students and interns encounter clinical cases in the form of intensely personal dramas, events shared with many concerned parties: patients, relatives, fellow professionals. In these encounters, all the powers of science and technology that identify the characteristics of “life under altered circumstances” are enriched and elucidated.
As it happens, I have had many years of experience as both student and teacher in caring for patients like Terri Schiavo with neuro-psychiatric disorders. My patients have included individuals with dementia, confusion, apathy, and stupor, produced by diseases like Alzheimer’s, Huntington’s, stroke, infection, trauma, malnutrition, poisoning, and asphyxia. As is true of most doctors, the clinical cases I remember most vividly—right down to the location within a hospital of the bed where the patient lay—were those I saw early in my training.
Such cases help form the assumptions and attitudes that we doctors and nurses bring toward the responsibilities that we have elected to take on. We can always be persuaded to talk about these war stories, as we call them, because they were so important to us in learning our craft and in how we act thereafter toward the people in our care. Here is one such story.
In the late 1950’s, I was the resident neurologist on a team responsible for the care of some 25 chronically ill, permanently disabled, and bed-bound patients suffering from advanced neuro-psychiatric disorders. Each morning I would travel from bed to bed in the company of several junior interns, pushing a cart with the patients’ records and checking up on them while simultaneously discoursing on what I knew about their condition. Because patients in such a chronic setting change little from day to day, finding something new to say about them becomes a challenge.
This was especially true of one patient—a man in his late fifties who, after a botched brain operation, had been left in an apathetic state not too different from Terri Schiavo’s. Like her, he gave little evidence of awareness, responding mostly with groans and grimaces and moving little if at all. He had been in that state for several years when I took over on the ward; ultimately, he would live thirteen years in this condition.
The nurses, who were feeding him with spoon and cup, thought he had some awareness—as did some relatives who visited him—and even claimed to have heard him utter a few words. But evidently their testimony was not taken seriously. A biographical sketch written about him after his death—for in his active career he had been very well known—would state that, once having suffered his brain injury, “he never spoke again.”
We young physicians felt honored to be caring for this man, who was of our fraternity. Prior to his injury, indeed, he had been quite simply the foremost clinical scientist in America. Among his many achievements, he had illuminated the functions of the parathyroid glands and so enlarged scientific knowledge of calcium metabolism, the dynamics of bone construction, and diseases of the bone like osteoporosis and osteomalacia. From his specific studies, he had discerned general principles (including “end-organ resistance to hormonal action,” a concept prefiguring the receptor revolution in endocrinology), and he made leaders of his students by teaching them how to employ biological science in investigating the pathogenesis of human diseases. In a relatively brief academic career, he had changed the face of American academic medicine and pointed the way to the future.
So we were pleased to care for him. But this did not ease the task before me upon visiting his bedside each morning as I searched for something interesting to say to my jaded interns. Soon enough they began to grumble that I was repeating myself as I would note dutifully that, although Dr. A’s apathetic state was profound and unchanging, occasionally such a patient might, if startled, give out a coherent response revealing some human consciousness. Looking at the man lying before them, they thought they had ample reason to doubt the applicability of my ideas to this case. A particularly bold intern challenged me one morning: “Enough of that, show us that he can respond.”
I knew perfectly well that I was being baited over a matter where I was unsure of my ground, but I moved briskly from the records cart to the bed, shook the patient by the shoulder, and asked in a sharp voice: “Dr. A, what’s the serum calcium in pseudopseudohypoparathyroidism?” For the first time in my experience with him, he glanced up at me and, loudly enough for all the interns to hear, said: “It’s just about normal.”
A full and complete sentence had emerged from a man whom none of us had ever heard speak before. His answer was correct—as he should know, having discovered and named the condition I asked him about. Subsequently, in all the months we cared for him, he would never utter another word. But what a difference that moment had made to all of us. We matured that day not only in matters of the mind but in matters of the heart. Somehow, deep inside that body and damaged brain, he was there—and our job was to help him. If we had ever had misgivings before, we would never again doubt the value of caring for people like him. And we didn’t give a fig that his EEG was grossly abnormal.
To apply these observations to Terri Schiavo’s case, we might imagine her as the subject of a medical analysis known as a morbidity-and-mortality (M&M) conference. Such conferences, reviewing how a patient has been treated, are a standard method by which medical and surgical services maintain standards of excellence.
In the Schiavo case, such an M&M assessment, considering all the factors at play in her treatment, would probably conclude that in the early years after her injury she had received first-rate care. She was carried through the acute phase, when she could easily have died. Having settled into a state of partial recovery, she was then taken to rehabilitative and physiotherapeutic centers for further assessment and treatment. There she was seen by several expert clinicians, started on intragastric feedings, and protected from infections of her pulmonary and urinary tract—all with the purpose of observing her neurological and psychological condition and hoping for further recovery.
When her trajectory of recovery leveled off, she was brought back to her neighborhood for care. Here, one phase gave way to another as what might be thought of as the rescue mission changed gradually into a sustaining mission, based on the realization that she was living with a brain injury unlikely to improve further and that what remained of her life would be spent in bed, in a limitedly responsive state. Bringing her into a hospice for the performance of this sustaining mission was another excellent clinical decision.
Hospice teams are made up of doctors, nurses, social workers, and physiotherapists who together develop a plan to care for someone in an incurable and usually terminal phase of life. In contrast to hospital services, hospice teams do not see time as being “of the essence.” Of the essence now is, instead, the development of mutual understanding among all the parties—patient, family, and caregivers—concerning aims and actions suitable to helping the one who suffers. Achieving those goods usually takes time, for everything depends on gaining and retaining the family’s confidence that the team really cares about the patient—is committed to doing its best to sustain what can be sustained, to alleviate suffering while at the same time not demanding heroic sacrifices from anyone.
This last point is very important. In a hospice, the staff does not provide a ventilator or cardiac monitoring at a patient’s bedside—because there is no plan to transfer the patient to an acute treatment center for respiratory or cardiac support. But neither does the staff believe that, for patients with longstanding and incurable conditions, one can or should ignore the possibility of helping them live a less painful life, even if that might mean a less long one. Thus, a hospice will treat the symptoms of certain potentially deadly conditions like bowel obstructions, cardiac arrhythmias, blood clots, and some infections, but will not treat the conditions themselves.
In hospice care, no one is deprived of the simple amenities of being kept clean and receiving food and water. In Terri Schiavo’s case, just as the team did not withdraw her bladder catheter, which helped keep her clean, so it did not withdraw the gastric tube, which had similarly been put in place during the rescue phase in order to ease the burden of nursing her. If for some reason the gastric tube had to be removed, the team would surely have tried to sustain nutrition by feeding her with spoon and cup.
In a hospice, decisions to limit medical services are made easier by everyone’s knowledge of how the patient’s condition emerged. Team attention, emphasizing as it does all relevant perspectives, strives to support all relevant interests. Terri Schiavo received good care and treatment, and would not have been permitted to suffer unnecessarily. At the same time, she would not have been carried repeatedly through processes of treatment that ultimately did nothing to advance the quality of her life. Reasoning in a similar way and in full consciousness, Pope John Paul II elected not to return to a hospital for the third time in a month for treatment of his fatal condition. Instead, and despite the increased risks, he accepted the treatments available in his home.
The overarching principle that hospice doctors and nurses strive to represent and exemplify is never to betray a patient to death, or act directly to kill. They may help a patient surrender to death, by forgoing active medical procedures when these provide nothing but empty time and extend the period of suffering. And their particular judgments in this regard may well be challenged as ambiguous—or even arbitrary—by those with a legal mind or an axe to grind. But those judgments are usually clear to everyone working in a hospice, just as the distinction between betrayal and surrender is clear in other situations in life.
It was in this phase of caring for Terri Schiavo that things went badly wrong. As we have seen, her husband had begun to despair for her and for his own future. As far as the public record shows, he seems to have been given little reason to rekindle his hopes. In particular, no functional studies (like an MRI) were done to determine whether her cerebral cortex, the brain region most responsible for coherent behavior, showed any evidence of recovering. Nor did the testimony of bedside observers help. While some thought they saw evidence of slow but tiny steps toward consciousness, others thought that she displayed only reflex reactions.
He was told her diagnosis was “persistent vegetative state.” Predictably, this label complicated rather than aided the situation, encouraging those who thought that she no longer existed as an animate being and infuriating those who believed it labeled her a vegetable. That is precisely why most neuro-psychiatrists who work in hospices, even though they acknowledge the term’s diagnostic accuracy, are reluctant to use it. Instead, they describe patients like Terri Schiavo in the language of neuropathology. Thus, they might have spoken of her as being in a “decorticate” condition, a term that not only indicates the problem but helps everyone—doctors, nurses, family members—think more dispassionately about how to evaluate it.
As these events unfolded, the plan of sustaining her in a hospice fell apart. Her guardian husband could no longer be persuaded to allow her to be fed, and under Florida law he had the right to demand that her nutrition be stopped. The courts were called in, and in the end judges and policemen removed the hospice team from her care, starving her until she died. No one was satisfied with the outcome. It came too slowly to suit her husband, and it came too brutally to comfort her parents. As for the hospice staff, so deeply biased in favor of sustaining life, one can only imagine their anguish.
So what, our imagined M&M conference leaders might ask, can one learn from this story? When I first considered this question along with several other doctors and nurses experienced in hospice care, we were nonplussed. Although we had treated hundreds of patients like Terri Schiavo, none of us had experienced a failure like this one. Our first thought was that other matters must have been at work—old resentments, unacknowledged jealousies, envy, bitter conflicts over money—to generate the kind of abuse of a patient so visible here. Only gradually, with publication of the reports, decisions, and interviews, did the explanation become clear.
As soon as Terri Schiavo’s case moved into the law courts of Florida, the concept of “life under altered circumstances” went by the boards—and so, necessarily, did any consideration of how to serve such life. Both had been trumped by the concept of “life unworthy of life,” and how to end it.
I use the term “life unworthy of life” advisedly. The phrase first appeared a long time ago—as the title of a book published in Germany in 1920, coauthored by a lawyer and a psychiatrist. Die Freigabeder Vernichtung lebensunwertes Leben translates as “Lifting Constraint from the Annihilation of Life Unworthy of Life.” Terri Schiavo’s husband and his clinical and legal advisers, believing that hers was now a life unworthy of life, sought, and achieved, its annihilation. Claiming to respect her undocumented wish not to live dependently, they were willing to have her suffer pain and, by specific force of law, to block her caregivers from offering her oral feedings of the kind provided to all terminal patients in a hospice—even to the point of prohibiting mouth-soothing ice chips. Everything else flowed from there.
How could such a thing happen? This, after all, is not Nazi Germany, where the culture of death foreshadowed in the awful title of that book would reach such horrendous public proportions. But we in this country have our own, homegrown culture of death, whose face is legal and moral and benignly individualistic rather than authoritarian and pseudo-scientific. It has many roots, which would require a long historical treatise to unravel, with obligatory chapters considering such factors as the growth of life-sustaining and life-extending technologies and the dilemmas they bring, the increasingly assertive deprecation of medical expertise and understanding in favor of patients’ “autonomous” decision-making, the explosion in rights-related personal law and the associated explosion in medical-malpractice suits, and much else besides.
All this has resulted in a steady diminution in the bonds of implicit trust between patients and their doctors and its replacement, in some cases by suspicion or outright hostility, in many other cases by an almost reflexive unwillingness on the part of doctors to impose their own considered, prudential judgments—including their ethical judgments—on the course of treatment. In the meantime, a new discipline has stepped into the breach; its avowed purpose is to help doctors and patients alike reach decisions in difficult situations, and it is now a mandatory subject of study in medical and nursing schools.
I am speaking of course about bioethics, which came into being roughly contemporaneously with the other developments I have been describing. To the early leaders of this discipline, it was plain that doctors and nurses, hitherto guided by professional codes of conduct and ancient ideals of virtue embedded in the Hippocratic oath or in the career and writings of Florence Nightingale, were in need of better and more up-to-date instruction. But, being theorists rather than medical practitioners, most bioethicists proved to be uninterested in developing the characters of doctors and nurses. Rather, they were preoccupied with identifying perceived conflicts between the “aims” of doctors and the “rights” of patients, and with prescribing remedies for those conflicts.
Unlike in medicine itself, these remedies are untested and untestable. They have multiplied nevertheless, to the point where they have become fixtures in the lives of all of us, an unquestioned part of our vocabulary, subtly influencing our most basic attitudes toward sickness and health and, above all, our assumptions about how to prepare ourselves for death. The monuments to the bioethicists’ principles include Do Not Resuscitate (DNR) orders, the euphemistically named Living Wills, and the legalization of physician-assisted suicide in the state of Oregon. These are not all the same thing, to be sure, and sophisticated arguments can be advanced for each of them; cumulatively, however, they are signposts of our own culture of death.
Hospital administrators are generally pleased with bioethicists and the rationalizations they provide for ceasing care of the helpless and the disabled. By the same token, their presence is generally shunned by doctors and nurses, whose medical and moral vocabulary draws from different sources, and whose training and experience have disposed them in a different direction. To most doctors and nurses, in any case, the idea that one can control the manner and pace of one’s dying is largely a fantasy. They have seen what they have seen, and what they know is that at the crucial moments in this process, no document on earth can substitute for the one-on-one judgment, fallible as it may ultimately be, of a sensible, humane, and experienced physician.
Contemporary bioethics has become a natural ally of the culture of death, but the culture of death itself is a perennial human temptation; for onlookers in particular, it offers a reassuring answer (“this is how X would have wanted it”) to otherwise excruciating dilemmas, and it can be rationalized every which way till Sunday. In Terri Schiavo’s case, it is what won out over the hospice’s culture of life, overwhelming by legal means, and by the force of advanced social opinion, the moral and medical command to choose life, to comfort the afflicted, and to teach others how to do the same. The more this culture continues to influence our thinking, the deeper are likely to become the divisions within our society and within our families, the more hardened our hatreds, and the more manifold our fears. More of us will die prematurely; some of us will even be persuaded that we want to.