Chapter 6_Facing Fatality and Worse Fates_pp 106-121

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Unformatted text preview: -six- Facing Fatality~ and Worse Fates Sometimes no rehabilitation is possible. Sometimes even the heroic efforts of the emergency rescue and trauma teams, the superb train— ing and skill of the neurosurgeons, the tireless dedication of the acute—care staff, and the advantages of state—of—the-art technology are not enough. Each year in the United States, between twenty— eight thousand and forty thousand victims who survive to reach the hospital die later of their head injuries. A conservative estimate that traumatic brain injury kills sixty thousand Americans annually means that even during a good year, it takes another life in this country every seven minutes. In the eleven years between 1981 and 1993, more Americans lost their lives to brain trauma than had died in all wars combined. And like war, it takes a disproportionate toll among the young. Even in this era of drug overdoses and the AIDS virus, traumatic brain injury remains America’s leading killer of children and young adults. In July 1989, Michael Doucette of Concord, New Hampshire, won a nationwide contest aimed at identifying the safest teen driver in the country. The Dodge division of Chrysler Motor Company and AMVETS, a veterans group, sponsored Operation Driver Excel- lence, a competitive demonstration of automotive skill and judg— ment that Doucette described as “like a driver’s test, only a lot harder.” When Doucette won the contest, he was awarded a tro- phy, a five—thousand—dollar scholarship, and a year’s use of a 1989 Dodge. In a tragic irony, this was the car that the seventeen—year— old boy was driving early one Friday evening the next February, when he was killed in a head—on collision. He apparently fell asleep at the Wheel and drifted into oncoming traffic. Both Doucette and the other driver, nineteen-year—old Sharon Ann Link, were dead at the scene. As with most auto fatalities, the cause in both cases was traumatic brain injury. Whether a brain—trauma victim dies at the scene, in the ambu— lance or helicopter, in the emergency room, or on the operating table, that death represents a life cut short, potential forfeited, contributions lost, and an intricate web of human relationships de— stroyed. Keen frustration, weary disappointment, and sometimes even nagging self—reproach can break through the wall of profes- sional detachment to hit the doctors, nurses, and emergency medi— cal technicians who work so hard to save the victim but fail. Family members and friends reel under the particularly devastating kind of shock and grief reserved for the survivors of those whose lives end suddenly, unexpectedly, and under violent circumstances. No wonder hospital staffs go all out to save trauma victims. Physi— cians, nurses, support technicians — everyone working in emergency medicine—has been trained with lifesaving as an overriding goal. Our culture puts a huge investment, both technological and emo— tional, in rescue. Diagnostic procedures, surgical techniques, drug treatments, and monitoring systems all contribute to the team effort that may turn a catastrophe into a miracle. Whether we hear Facing Fatality—and W/orse Fate: ' 107 ' ‘2; 95 .-:.~‘ A ) of them through factual news reports or see them in movies and soap operas, stories of such feats appeal to our romantic notions of being saved from danger and our yearning for instant gratification. Our investment in rescue carries over to the attempt not only to save life but also to preserve and prolong it. After the initial efforts have succeeded, we don’t want to lose the life that has been sal— vaged, so our acute hospital care also aims at keeping people alive with the assistance of advanced medical technology. This is all ap- propriate and worthwhile if we use our expertise and our technical resources to enable people to survive a crisis so they can be restored to normal or close—to—normal functioning. Individuals with what initially seem to be fatal injuries sometimes leave the hospital with capacities close to the those that they enjoyed before their accidents or assaults—with wounds, perhaps, but ones that will heal. That was my good fortune after my Childhood fall. Even those who suf- fer permanent disabilities from their brain injuries may be spared more devastating damage thanks to proper acute treatment. The surgical, neurological, and supportive care that Russell Moody re— ceived prevented further complications from his accident. Too often, however, our investment in rescue is combined with a lottery mentality. Once a life has been saved, we figure that as long as it is prolonged, there is always a chance, however remote, for recovery and restoration of function. This notion of beating the odds is a familiar feature of the American psychic landscape, and it helps to explain our fascination with such unexpected, unpredict— able recoveries as that of Conly Holbrook. On November 27, 1982, someone became murderously angry with eighteen-year—old Conly Holbrook. But instead of killing him, the assailant left the young North Carolina man severely brain-injured. For the first two months, he was completely uncon— scious, and doctors warned his family that he probably would die. For the next eight years, he sometimes seemed aware of his sur— Facing Fatality—and lVarxe Fate: ' 108 ‘ roundings but spoke only in his sleep. His mother, Effie Holbrook, quit her job at a furniture factory and devoted herself to caring for him full—time. She underwent a revival of her lapsed Christian faith and prayed fervently for her son’s recovery. Then, more than eight years later, on February 25, 1991, while he was hospitalized during a bout with pneumonia, Conly spoke his first words: “Mama, I know who hurt me.” Although his speech was halting and sometimes difficult to decipher, it was clear enough for his message to be understood: his cousin Donald Ray Combs was his attacker. It was no accident that Conly Holbrook’s story appeared in national newspapers on Easter Sunday. People who are given up for dead or “as good as dead” are occasionally resurrected. When this happens, and especially when the victim of traumatic brain in- jury not only survives but recovers, we all feel that the results were worth the enormous investment of time, resources, and effort. The problem is that all too often traumatic brain-injury victims survive but don’t regain anything close to normal functioning. They are completely dependent on others for all their basic needs. When a victim of traumatic brain injury dies, despite everything that dedicated caregivers aided by cutting-edge technology can do, the secondary victims—family and friends—begin to heal almost immediately. Our society has conventions and support structures to help them through this clearly defined grieving process. The family has a funeral to plan, thank-you notes to write for memo— rial contributions and flowers, belongings and assets to dispose of. Friends have pies and casseroles to bake and bring by, pleasant memories to share, sympathetic ears and shoulders to offer. Even when the death is a suicide, these rituals, formal and informal, impart a sense of closure. Each step makes it clearer that the head— trauma victim is irrevocably lost, at least in this life, to those who knew and loved him or her. Facing Fatalizy— and W/orxe Fates I o If the victim had health insurance, the insurance carrier pays the cost of the care that he or she received before dying. If not, the patient’s estate may cover it, Medicare or Medicaid may pick up the bill, the family may pay, or the hospital writes off those thousands of dollars as uncollectible. Family members may require years of treatment for depression or other aftereffects of the emo- tional trauma, but the direct investment of time, money, and skill in caring for the victim ends when he or she is pronounced dead. In the United States, most people who die of traumatic brain injury do so at the scene or Within two hours of admission to the hospital. Of the patients who make it to emergency rooms, those with severe brain injuries—that is, those with scores of eight or fewer points on the Glasgow Coma Scale of fifteen points—about 36 percent die within a year and 53 percent regain some level of in- dependent functioning. Around 8 percent return to consciousness but have such problems with memory, communication, thought processes, and impulse control that they require constant care for the rest of their lives. Another 3 percent, while physically alive, re- main completely unconscious. Technically, patients in this last group aren’t in comas, although until recently doctors did lump them with the comatose. Someone in a true coma never opens his or her eyes, and a coma that lasts more than a few weeks is extremely rare. But each year traumatic brain injury leaves thousands (no one is sure exactly how many) in what now is called a persistent vegetative state (PVS). (Thousands more enter this limbo through drug and anesthesia overdoses, near drownings, and other insults causing severe shock or depriving the brain of oxygen.) Because their brain stems survive the trauma relatively undam- aged, patients in PVS breathe, their hearts beat, they perspire when they get too warm, and they shiver when they get too cold. They maintain a definite sleep-wake cycle, opening and closing their eyes Facing Fatality-and Worse Fate: ' 110 ' at regular intervals. And because the brain stem regulates the alert— ing mechanism, they also open their eyes in response to painful pressure and loud noises. Yet patients in a persistent vegetative state are far more pro— foundly unconscious than you and I are when we are asleep. Such people are alive only in the basic sense that their organs essential to passive survival still function. To all appearances, they have no awareness of surroundings, no fantasies or fears, no perception of pleasure or pain. When noxious stimuli cause their eyes to pop open, that’s only a reflex. They are incapable of voluntary acts. Their biological tenacity is not a will to survive. They interact with no one; they share no feelings or thoughts, verbally or otherwise. Their bodies live, but their personalities are utterly absent. They are as cut off from family and friends as they would be if they were dead, yet our culture has no rituals for helping these loved ones ac— knowledge their loss and for comforting them in their grief. Neurologists tread cautiously in diagnosing a patient as persis— tently vegetative. First, they rule out spinal injury or damage caused to the parts of the brain regulating speech and movement. In what’s called locked—in syndrome, for example, a head—injury victim is aware of his or her surroundings but unable to talk or move his or her limbs when asked. Normally, however, the individual can blink one or both eyes in response. Diana Dean lingered for a decade in what may have been locked— in syndrome. In March 1983, three months after she had graduated from a Dallas high school, she and her family went to Galveston for spring break. One afiernoon at rush hour, at the busy intersection of two beach roads, a speeding pickup truck broadsided the car that she was driving. One of Diana’s passengers, her sister Laura, suffered serious injuries but recovered fully; later she became an executive with the Brain Injury Association in Washington, DC. The other passenger, Laura’s best friend, Shanna Butler, died. After Facing Fatality—and Worse Fate: ‘ III ' five weeks in acute care at the University of Texas Medical Branch in Galveston, ten months at Baylor University Medical Center in Dallas, a year at a rehabilitation hospital, and a total of $600,000 in medical bills, Diana reached the limit of her progress. She estab— lished a clear sleeping and waking cycle, and she seemed to have some awareness of what went on around her. The only way that she could communicate was to open one eye on command and use it to follow an object. As a way to wrest some meaning from their tragedy, in 1986 her family founded the Diana Dean Head Injury Guild, a nonprofit organization supporting head—injury pre— vention, education, and research. Diana Dean was what neurologists call devastated; she was ut— terly helpless and would never recover the ability to talk, sit up, or clothe or feed herself. But if she was partially alert at least some of the time, she wasn’t in a persistent vegetative state. Her family rearranged their lives and modified their home so that they could take care of her there. Ten years and four months after the acci— dent, Diana died of complications from her injuries. Because those who enter the hospital in a coma but later regain consciousness pass through a transitory vegetative state along the way, doctors classify patients as va only after prolonged uncon- sciousness, lack of response to verbal commands, and absence of any voluntary movements. By then, weeks have passed since the in— jury and subsequent surgery. Brain swelling and infection are under control.Without artificial hydration and nutrition (usually admin— istered through a feeding tube), these patients would die within a few days; but with minimal attention to such basic needs, they could live for decades, especially if they are young and otherwise healthy. Granted, even with everything modern medicine can do, chances are that these catastrophically brain-injured people will die. In a recent study of 650 head—injury patients brought into Facing Fatality—and Worse Fate: ' 112 ' four university trauma centers and later diagnosed as persistently vegetative, only ninety—three—14.3 percent—were alive after six months. Of these, forty—seven regained some degree of conscious— ness by the end of the first year and another six did so by the end of the second. In other words, forty patients~close to half of the survivors—still lingered in a twilight zone between life and death. Alive but not living a life, they lacked the capacity for thought, feeling, or human interaction. Their lives consisted only of biologi- cal processes and reflex movements. Persistently vegetative patients are medically stable but beyond the reach of medical therapy or cure. Very occasionally, someone who has remained in a persistent vegetative state for more than two years will show signs of responsiveness, but this'happens in fewer than 1 percent of all cases. After someone has been unconscious for that long, many neurologists change the diagnosis of persistent vegetative state to a prognosis of permanent vegetative state. (To avoid confusion, in this book I use “PVS” only when I mean a vege— tative state that is “persistent,” not “permanent.”) The dilemmas that this condition raises for individual clinicians, for families, for the health care system, for policy makers, and for our society as a whole are among the most perplexing we face today. Take the famous case of Nancy Cruzan, who at the time of her accident was a vivacious young woman of twenty—six. On January 11, 1983, she was driving alone when she lost control of her car and crashed. Several minutes later, a passerby found her unconscious, lying facedown in a ditch, and not breathing. Emergency medi— cal technicians resuscitated her at the scene, then rushed her to a nearby hospital, Where she received trauma care. But because of the severity of her head injury and the length of time that her brain had been deprived of oxygen, her prognosis was grim. For the first few weeks following her wreck, Cruzan seemed to be recovering. She was able to swallow and take food by mouth. Facing Fatality—and Worse Fates - o But then something happened to her brain—no one knows exactly what—and she deteriorated into a persistent vegetative state. She remained in this condition for four years while her family alter— nately hoped for a miracle and grieved over their loss. Gradually, they came to terms with the fact that her persistent vegetative state had become permanent. She was never going to regain conscious— ness, much less recover other capacities. Her parents eventually de— cided that the Nancy whom they knew and loved would not want to live in this limbo. As her guardians, they asked the nursing home taking care of her to stop the artificial feedings that kept their daughter—or at least her body—alive. \When the nursing home re- fused their request, they went to court. The judge agreed that Nancy Cruzan’s parents had the authority to make this demand on behalf of their daughter, but the nurs— ing home remained adamant, setting in motion a legal wrangle that went all the way to the Supreme Court. For the first time in its history, the nation’s highest judicial body ruled on a “right to die” case. In a long and complicated set of opinions, the justices struggled to find adequate words to capture and address the many troubling and subtle issues raised by the Cruzan case. The court in- dicated that individuals have a constitutionally protected “liberty interest” in accepting or refusing medical care, including such life- sustaining procedures as intravenous hydration, artificial feeding, and mechanically assisted respiration. But the court also ruled that states have the authority to demand high standards of evidence about how patients, before they were injured, said they wanted to be treated if they ever fell into a permanent vegetative state. Armed with the Supreme Court’s decision, Cruzan’s parents returned to the court where they had filed their original peti- tion. Once again, bolstered by additional testimony about her gen— eral attitude and specific preferences, which suggested that Cruzan would not want to be kept alive in a permanently unconscious Facing Fatality—and W/orre Fate: ' 114 ' state, the local court ruled that the parents had the legal authority to insist on her behalf that the artificial feeding be stopped. The nursing home complied. In a few days, Cruzan died. More than four years had passed since her parents had filed their first petition, more than eight since her accident. Numerous surveys reveal that 90 percent of Americans would not want their organic life prolonged if they were permanently unconscious. Many say that they consider a permanent vegetative state a fate worse than death. As far as we can tell, for the patient, it is a fate equal to death, because he or she doesn’t cognitively ex— perience anything. For the family, however, losing a loved one to a permanent vegetative state almost certainly is worse than losing him or her to unambiguous, organic death. The moral and finan- cial burden of seeing that the shell of that person receives adequate care continues. There is no closure, no ritualized comfort for grief. Yet, surprisingly, family members are often reluctant to “pull the plug” and terminate life support, even when assured that this is legally and ethically permissible. Those closest to the patient may never give up hope or may hold out for a miracle, even if reason tells them that the chances for one are infinitesimally remote. Although Conly Holbrook spent eight years too devastated to speak, he wasn’t completely unconscious; even his seemingly miraculous re— covery wasn’t a return from a permanent vegetative state. For fear of appearing to be insensitive or, worse still, advocates for euthanasia, doctors and hospitals are reluctant to challenge families clinging tenaciously to hope even if they disagree with them. Complicating the issue on every side is our collective con- fusion about death. As a culture, we have difficulty facing fatality. On one hand, we see it every day. Local television newscasts lead their nightly programs with murders, lethal industrial accidents, and multifatality car wrecks. Network broadcasts take us live to the site of the latest global catastrophe, showing us the bodies of Facing Fatality—and Wine Pater ' 115 ' fellow human beings killed by war, famine, earthquake, or epi— demic. Action—adventure films rack up staggering body counts on the way to setting records at the box office. Yet as a society we do not accept death as a natural end to life. Instead, we suffer from a Ponce de Leon complex, always in quest of the fountain of youth, the cure for disease, the wonder drug or therapy that will restore function. We distance ourselves from personal contact with the dead and dying. Nowadays, despite the increasing popularity of in— home care for the terminally ill, most Americans still take their last breaths in hospitals, many in intensive care units—one of the most alienating and artificial environments imaginable. We find it especially difficult to accept the deaths of people who die unexpectedly from accident or violence or who die young, long before their time. Since most victims of traumatic brain injury fall into both these categories, we’re reluctant to give up on them. The present high—tech trauma care in place at major hospitals across the country is superbly suited to saving the lives of victims of severe head trauma. It does an outstanding job of snatching them back from sudden and untimely death. But the heroic urge to rescue, so fitting for emergency situations, exerts a prolonged influence in our health care system. Aggressive intervention to save the lives of trauma victims is often followed by stubborn resistance to with— drawing care, even when it is obvious that the continuation of life-sustaining procedures is futile. Once we’ve initiated rescue in a medical setting, we seem unable to stop. When a hiker is lost in the wilderness or a sailor is lost at sea, eventually we give up the search. But having pulled a trauma victim back from the brink of death, we seem unable to accept the fact that our medical system may not be able to help that person resume any but the most tech- nical semblance of a life. One reason for this reluctance is our psychological investment in the patient. To the emergency medical technicians, the neuro— Facing Fatality—and Wm’ Fate: ‘ 116 ' surgeon, and the acute—care nurses, the patient’s survival represents enormous effort, the intense focus of their training, experience, and dedication. To the family, the fact that the patient is alive means that he or she has already beaten the odds. If the doctors were wrong about that person’s dying, they might also be wrong about his or her chances of recovering consciousness and function. After all, Sleeping Beauty is one of our favorite fairy tales. Our culture evinces a strong current of vitalism—the value sys— tem that holds that any human life is precious and should be bio- logically prolonged as long as possible and at any cost. Only a small minority of Americans actually subscribe to vitalist principles when it comes to how they wish to be treated, yet this perspective has a pervasive influence on how we treat the catastrophically injured. The goal of saving and preserving life is deeply rooted in Western medical tradition, and hospitals and health care professionals often allow this goal to override all other considerations. On top of this, hospital administrators and health care profes— sionals often mistakenly fear that failure to do everything possible to preserve life renders them vulnerable to legal liability or bad publicity. In addition, they may have a vested economic interest in prolonging the lives of patients, even the permanently unconscious. As long as someone pays—Medicare, Medicaid, a private insur— ance carrier, or the patient’s family—all the financial incentives favor continuing artificial life support. Even doctors who object to using futile life—extending technologies operate in an environment increasingly driven by economic considerations. As a cornerstone of medical ethics, respect for personal prefer— ences can overcome the pressure to keep the permanently uncon- scious patient organically alive for years and even decades. But most victims of traumatic brain injury are young and healthy, not the sort to have drafted the advance directives that are popularly called living wills. Without such documented preferences concerning ar— Faeing Fatality—and Wme Fate: ' 117 ' tificial life support, physicians and hospitals usually do nothing to hasten death unless clearly authorized by a guardian or a court to do so. This is nothing new. In his 1992 memoir Dawn fiom Troy: A Doctor Comes onge, author and retired surgeon Richard Selzer de- scribes a scene that had taken place about fifteen years earlier, when he and the house staff were making rounds in the new trauma unit of a major hospital in Pittsburgh. He says the patients were mostly men and women who had been in auto accidents, with two exceptions. The first of these was a young gymnast who had mis— calculated a rumble and was now quadriplegic. Selzer continues: In the next bed was a young farmer who had been struck on the head by a falling tree. Such an event could have taken place in pre- historic times. His electroencephalograph was flat. There was no hope of his waking up. Every four hours the resident doctors in- serted a tube into his lungs to suction away the secretions, feeding misfortune that it might endure. “At what point,” I asked them, “will you stop thinking of pneu— monia as an enemy?” “That is a philosophical question,” the resident told me. “I don’t deal with them.” “If he were your brother?” The young doctor murmured some- thing and looked down at his shoes. Permanently unconscious patients often linger in their limbo for years, surviving with the assistance of artificial feeding and routine nursing care until they die of infectious disease or a condition re— lated to their initial injuries or subsequent inactivity. If they were strong and healthy before their accident or assault, they may sur— vive to within a decade or two of their normal life expectancy. Meanwhile, families adapt in their own ways. Some abandon their permanently vegetative relative to institutional caregivers and get on with their lives. Others regularly assist with the nursing or Facing Fatality—11nd Worse Fate: ' 118 ' provide the care at home. A few families, like the Cruzans, do seek legal authority to stop artificial life support or negotiate with the caregivers to do so. Thanks to the legal battle sustained by Nancy Cruzan’s parents, such families’ ordeals have generally become less grueling. Once patients have been reliably diagnosed as permanently vege— tative, no one is quite sure what to do for them. On one hand, physicians can sustain the organic lives of such patients for days, months, or years. Yet no other medical goals can be achieved. These patients cannot be cured; they cannot be restored to consciousness. Some argue that keeping permanently vegetative patients alive is a misuse of precious resources, because these patients have no pros- pect of recovery. Yet these totally dependent individuals are the most vulnerable people in our society. And one, of the primary goals of any advanced civilization is to protect the vulnerable. Ambiguity extends and often intensifies the sadness and suffer— ing of each patient’s family and friends. Some cling to a thin thread of hope for a miracle, even after years pass. Others take refuge in denial, insisting that reflexes such as swallowing or random arm movements are a sign of subjective awareness. The clinical dilemmas raised by permanent vegetative states would be so much simpler if neurologists could tell in the trauma center or operating room which victims of traumatic brain injury would become permanently vegetative. The medical community could simply agree that artificial nutrition and hydration were not appropriate treatments for these patients. By never ordering that a feeding tube be inserted, doctors would spare themselves the di— lemma of whether and when to remove it. But our’diagnostic technology cannot predict at the time of injury which brain—trauma patients will die, which will be perma- nently vegetative, which will be conscious but severely disabled, and which, given good luck and appropriate rehabilitation, will Faring Fatality—and Mme Fate: ' 119 ' make fairly full recoveries. To give these last two groups a chance, the acute—care team has to do everything in its power to keep all four groups alive. We can’t foist off on them our collective respon— sibility for confronting the issues raised by those who linger in vegetative states. The longer a patient spends in a persistent vegetative state, the more unlikely it is that he or she will ever recover even minimal consciousness. After two years, even the most conservative neu— rologist would change the diagnosis of persistent to a prognosis of permanent vegetative state. Once this grim verdict is reliably ren— dered, both reason and compassion tell us that all forms of medical treatment, being futile, should cease. Nature should be allowed to finish what accident or assault started. The family should be allowed to grieve and be comforted. Still, what about the feeding tube that has kept the vegetative patient alive throughout those two years? What about the doctor who orders it removed and the nurse who carries out these orders? Clearly, stopping life—sustaining procedures for a patient who otherwise is not dying causes his or her death. Without an advance directive from that individual or the orders of a legally authorized representative acting on his or her behalf, this is arguably euthana— sia. Some physicians, bioethicists, and policy makers seek to finesse the ambiguity of PVS by arguing that once patients are determined to be permanently unconscious, they should be declared dead. But passage of time is the only way to know that someone is permanently unconscious. We can be virtually certain that a per— son who has remained in a persistent vegetative state for a year will never recover awareness; once two years have passed, the chance of that individual regaining even the most basic level of consciousness is minuscule. Yet setting such calendar limits would put us in the position of saying that a patient who was alive on Tuesday was dead Facing Fatality—and Worse Pater ' 120 ' on Wednesday, even though his or her objective status was un— changed.When it comes to the permanently vegetative, the line be- tween life and death is blurry; we can’t make it more distinct by fiat. Permanently unconscious patients are not, by our usual criteria, dead. They breathe, often on their own, and their hearts beat with— out mechanical assistance. Their brain stems are able to maintain blood circulation sufficient to keep their vital organs operating. For all meaningful purposes, their personal history may be over, but they are not brain-dead. After years of grappling with this enigma, I have concluded that while this may be life, it is not human life. Merely the organic functioning of our bodies doesn’t constitute being human. Being persons requires having a personality, being aware of our selves and our surroundings, and possessing human capacities, such as mem— ory, emotions, and the ability to communicate and interact with other people. These ingredients of our humanity may be damaged or limited—some may even be lost—without forfeiting our claim to personhood. But when they are all totally absent, forever and ir— revocably, as is the case with the permanently unconscious, we are no longer human beings; hence society no longer has a moral re— sponsibility to sustain our lives. A physician who orders a stop to artificial feeding and hydration in such a case ends a life, but only an organic life. He or she doesn’t commit murder. I recognize that from the standpoint of bioethics and of law, this is shaky ground indeed. We don’t know what to do with patients in permanent vegetative states because we don’t know what to say about them. Are they alive or dead? Persons or nonpersons? One thing is certain: they are wholly vulnerable, totally dependent on our willingness to provide the essentials of life, such as food and water. If we discontinue nutrition and hydration, they will die. We try to make such a decision tolerable by emphasizing that the nutri— Facing Fatality—and W/arxe Fates ' 121 ° tion and hydration are “artificial.” But we can’t get around the fact that they are hardly more so than feeding an infant with a bottle, and they certainly rely more on labor than on technology. With our constant but routine and low—tech help, permanently vegetative patients may survive for decades. If we stop feeding them and giving them water, they will die within days or at most weeks. Because they are totally unconscious, this death will not be pain- ful; nonetheless, it will be certain. Even if our primary motive is to discontinue futile treatment—a valid medical decision—rather than to cause their death, we know that they will die as a result of our actions. That makes it hard to dodge the charge that this is a form of euthanasia: causing the death of a patient who would not die were the current treatment to continue. The key to this dilemma lies in current hospital policies. As matters now stand, unconscious patients are assumed to want their lives prolonged artificially, whatever the prognosis, unless they have left clear evidence to the contrary. In other words, the burden of proof lies with the family seeking to remove artificial life support. In Philadelphia, Joey Fiori lingered in a vegetative state for twenty—four years. In 1971, ten days before he was to marry his childhood sweetheart, the young Vietnam veteran had a motorcycle accident that left him severely brain damaged. Before the wreck, Fiori, who had scored 147 on an IQ test, had hoped to become a career navy officer specializing in nuclear physics. After more than a year of rehabilitation, the best he could do intellectually was to play simple card games. His speech consisted of two words: “I” and “itch.” In 1976, Fiori suffered an epileptic seizure brought on when a local Veterans Administration hospital failed to medicare him properly. The seizure threw him into a permanent vegetative state. Admitting their ultimate responsibility for the medical malprac- tice, the federal government paid for his care at Philadelphia’s Mayo Facing Fatality—and Worse Fate: ' 122 ' Nursing Home, which cost $150,000 a year. But the emotional burden fell on Fiori’s mother, Rosemarie Sherman, who brought friends together for bedside prayer vigils. In 1992, realizing that her son would never regain consciousness, she asked the nursing home to remove his feeding tube. It refused to do so without a court order. Like the overwhelming majority of twenty—one—year—olds, Joey Fiori hadn’t left a formal advance directive or even letters or diaries expressing in writing what his desires were should such a decision ever need to be made. Because he had served in Vietnam, surely he must have faced the specter of his own death, but he may not have considered the possibility of survival without thought, emotion, or awareness. Fiori’s lack of a clear statement about his wishes should he ever lapse into a va created a legal nightmare as the state and the courts grappled with determining who could make decisions in his place and what decisions could be made. However, in January 1995, in the midst of the motions, hearings, and appeals, Flori died of pneu— monia. As an ironic ending to this tragic story, a year after his death and three years after his mother had first requested that his feed— ing tube be removed, the Pennsylvania Supreme Court finally held that Rosemarie Sherman may, without court involvement, have the life—sustaining treatment removed from her son if two physicians consented. For Fiori, of course, this was too little, too late. Let us hope that other families may be spared similar ordeals. How much more humane it would be for Rosemarie Sherman and thousands of others in her situation if we assumed, consis— tent with the wishes of nine out of ten Americans surveyed, that no one would prefer a life of permanent unconsciousness sustained and extended by such technologies as feeding tubes. This new pre— sumption should be announced clearly in legal statutes and hospi- tal policies, and it should be communicated to the public, so that Facing Fatality—and Worse Fate: ' 123 ' III—w IH‘I,‘ 3—! —-— c u .. nuvyu. I , ll: those who would want to be kept alive under those conditions can draft advance directives stating so. Of course, patients who have expressed a preference for being kept alive in PVS experience no satisfaction from their choice once they become permanently unconscious. Their families endure but are unlikely to welcome the role of caretaker for an individual who isn’t even aware of their presence, let alone the sacrifices that they are making. Even if money is available to pay for the care, there is something ethically repugnant about the futile expenditure of lim— ited economic and professional resources. But tolerance of diversity is one of our culture’s most important values. To uphold it, we must allow vitalists to seek life at all costs. That doesn’t mean that they should be entitled to receive it upon demand. They should have to arrange to pay for extending their lives in such circumstances, and insurers might soon discover the profit potential in offering separate policies covering permanent vegetative states. Since the actuarial chances of any one individual being rendered permanently vegetative are slim, insurance premi— ums could be afiordable; they might even incorporate a modest surcharge to go toward insuring vitalists who are indigent. The state should regard vitalism as a personal and private mat- ter, like religious education. While our shared values demand that we respect the views ofvitalists, their values do not impel us to sup- port them with public funds. Spending millions or even thousands of dollars to sustain the mere biological existence of patients who will never recover consciousness is not just futile; it is also unfair to the victims of traumatic brain injury whom that money could help, including those who are only passing through the limbo of a persistent vegetative state. Facing Fatality—and Worse Pater ' 124 ' ...
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This note was uploaded on 08/02/2011 for the course UGS 302 taught by Professor Staff during the Spring '08 term at University of Texas.

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Chapter 6_Facing Fatality and Worse Fates_pp 106-121 - -six...

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