Chapter 8_A Better Use of Resources_pp 141-154

Chapter 8_A Better Use of Resources_pp 141-154 - - e i g h...

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Unformatted text preview: - e i g h t - A Better Use ofResources You may recognize the following story: a beautiful young woman of royal birth falls-into a persistent vegetative state and remains in it for many years—easily long enough for it to qualify as a perma— nent vegetative state. But as it turns out, her living in limbo is not permanent. Indeed, the young woman regains consciousness after a young man (a fellow royal) comes to pay his respects; when he touches her hand and kisses her lips, she opens her eyes and rises from her bed. Following a lightning—fast recovery, she is completely normal in every way, with absolutely no loss of function. She and the young man ultimately marry. Unfortunately, such happy endings are mostly found where this one is—in a fairy tale. Beyond the story Sleeping Beauty and its modern movie equivalents, however, patients who regain conscious— ness after six months or a year in a persistent vegetative state don’t blink a few times, ask in a clear voice, “Where am I? What hap— pened?” and then smile wanly at their dedicated doctors and re— lieved loved ones. Instead, they emerge in tiny steps—eyes focused briefly on a person one day, an index finger raised on command weeks later. Their recovery goes only so far and then stops. But here the clinical uncertainty that attends all serious head injuries clouds the prognosis. The recovery process is so individual and subject to so many factors that neither neuroscientists nor rehabilitation therapists can predict its limits. Almost always, such patients are left with severe mental and physical disabilities. Many times, the family of a PVS patient greets this tragic prog— nosis with denial. They disregard what doctors and nurses try to tell them and welcome the words of hopeful, upbeat friends, which help them feel better, regardless of the truth. But that sort of cheer— fulness sets up the family for false hopes. In these circumstances, it’s only human to hope for miracles, but they rarely happen. Such slim hopes may have a beneficial effect when they emotionally cushion the family who is adjusting to a head injury victim’s plight. It may even be easier for the family to hold out for a miracle if the patient remains vegetative; if the injured regains consciousness, then the family is forced to confront his or her severe disabilities. In 1994, I was called as a bioethicist to consult with defendants in a lawsuit brought by the family of Thom Nguyen (not his real name), a Vietnamese immigrant in his thirties who had been em— ployed by a major construction firm in Houston. In May 1992, while he was working on a project at a petroleum refinery, he rode his bicycle into the back of a truck owned by the oil company. His head hit a protruding piece of metal with such force that it severely damaged most of the right side of his brain. Remarkably, Nguyen survived, but he was devastated. His only consistent response was reflexive withdrawal from painful stimuli. His accident also left him with a long list of medical problems ranging from respiratory infections to chronic diarrhea. Because Nguyen was on the job at the time of his injury, workers’ A Better Use of Resource: ' I42 ' compensation paid his medical bills, but his family sued the oil company for pain and suffering and for a settlement to cover the cost of rehabilitation. At issue was whether he experienced or would ever be able to experience pain and suffering, or anything else. Another matter for debate was whether he could derive any sort of benefit from any kind of rehabilitation. Doctors who had exam- ined the patient asserted that he was in a persistent vegetative state, completely unaware of his environment, and that he had shown no improvement in two years. He hadn’t demonstrated an ability to understand simple commands in either English or Vietnamese. His only responses were reflexive. (A reflexive response to pressure didn’t mean that he consciously felt the pain.) For these reasons, I was quite certain that Nguyen did not feel pain, would not do so in the future, and could not be helped by rehabilitation, but the family was prepared to field its own experts to argue otherwise. It took the Houston hospital four and a half months to stabi— lize Nguyen enough for him to survive being transferred to Long Beach Memorial Medical Center near Los Angeles, where he could be close to his nearest family—his sister and her husband. After Nguyen had a stint in the intensive care unit, where he was treated again for respiratory problems and diarrhea, his doctors moved him to the subacute unit of a state—of—the—art rehabilitation facility near Los Angeles. This unit specialized in staving off medical complica— tions while giving severely brain—injured patients the sensory stimu— lation that research shows might improve their cognitive function— ing enough for them to take on more ambitious rehabilitation. Because it involved so much one-on—one work with a variety of professionals trained in sophisticated therapies, the program cost around fifteen hundred dollars a day. Nguyen’s sister and brother— in-law demanded that he be kept there indefinitely at the oil com— pany’s expense. The company wanted to send him to a nursing home offering no rehabilitation but specializing in severe brain and A Better Use of Resource: ' 143 ' u» : 1. nervous system disorders; its daily fee per patient was five hundred dollars. By any neurological standard, Nguyen wasn’t eligible for reha— bilitation because he didn’t have the capacity to benefit from it. Yet his sister, who visited him daily for months, claimed that he rec— ognized her, even that he had talked to her. She and her husband consistently refused to Sign “do not resuscitate” orders on his behalf and insisted that Nguyen would want everything possible done to preserve his life. I was convinced that the sister was sincere, that she genuinely believed that her brother communicated with her. I was also quite certain that she was wrong. I’d seen many families of permanently vegetative patients pin similar false hopes on unconscious responses. Muscles contract and spasm on their own. In the imaginations of those denying the loss of loved ones, exhalations and coughs can become attempts to speak. The grasping reflex, which causes the hand of a newborn to curl around Whatever touches the palm, ex— hibits itself in adults only when they have severe brain damage; yet it’s comforting to interpret this very negative symptom as a posi- tive responsive squeeze. Several matters complicated the sister’s reaction. Apparently, Nguyen had saved her life back in Vietnam, so she felt a strong obligation to repay the debt. If she thought she had abandoned him, the burden of guilt might be unbearable. Her concern for her brother also extended beyond this life. Although he had con- verted to Roman Catholicism, the rest of the family had remained Buddhist. Nguyen’s sister feared that he would be reincarnated as a cockroach if he died without repenting of his womanizing and other misdeeds. But a Vietnamese Catholic priest familiar with Buddhist traditions said that he doubted such concerns applied to someone so severely brain—damaged. In the priest’s opinion, con- tinued treatment merely averted natural death. A Better we of Resource: ' 144 ' A less noble complication also entered the picture. If Nguyen died, the lawsuit against the oil company would die with him. His family would get nothing. As long as he lived, the family had a shot at a lump—sum settlement for rehabilitation and at a big pain—and— suffering settlement, both a certain amount for their own distress and, if they could establish that Nguyen was conscious at least some of the time, a much larger amount for his. The bad outcome made for a good lawsuit. Meanwhile, highly trained doctors, nurses, and therapists were giving state—of—the—art care to a man who couldn’t possibly bene— fit from it, and other victims who might improve with appropriate rehabilitation were languishing in nursing homes—simply because their accidents hadn’t happened at work or under conditions where the party at fault was well insured. In other words, these victims had been doubly unlucky. That was certainly the case with Donny Michaels (not his real name), a patient whom I encountered as a result of a neurosur— geon’s consultation request. Michaels could look at your face and in five minutes create a charcoal sketch that captured your fea— tures but exaggerated them in a way that revealed your person— ality. His caricatures were sometimes humorous, never mean, often uncanny. His evocative beach scenes and intricate abstract water— colors showed similar promise. People in the Gulf Coast resort town where he worked making quick portraits of tourists agreed that he had the talent and social skills to be a great deal more than a street artist—if only he weren’t so fond of beer. Making friends came easily to Michaels. His warmth, humor, and artistic perceptiveness charmed everyone from just—introduced acquaintances to his family. But his drinking and his constant re— quests for money strained his relationships. So did his periodic eruptions of paranoia. Michaels lived for his art, allowing nothing to distract him from A Better Use of Resource: . 145 . his work—except alcohol. In 1990, when he was thirty—one, Mi- chaels’s family confronted him about his drinking, but he insisted that he wouldn’t—couldn’t—give it up. A year later, Michaels at— tempted to kill himself by slitting his throat. Like many suicide attempts, this one was marked by ambivalence. Michaels had made sure that a friend knew where he was and what he planned to do, and he was rescued. Even after several weeks spent treating him in a psychiatric hospital, his psychotherapists couldn’t decide Whether his suicidal depression and other emotional problems represented an alcohol-induced disorder or a long—standing mental illness. The psychiatrist told Michaels’s sister that Michaels would have to be sober for six months before a reliable assessment could be made. But in six months, Michaels was out of the hospital and back on the road, resuming his life as a nomadic artist. Although in 1993 he sent his family a note warning them that someday he’d kill himself, the police officer who investigated his accident the next year said he had no reason to believe that it was another suicide attempt. On the night of Michaels’s car wreck, Michaels had been engaged in what he called “maintenance beer drinking.” Besides, it was four o’clock in the morning when he headed his 1986 Dodge toward the beach. As he approached the intersection, he may have dozed off momentarily. The impact of his car smashing into the utility pole threw Michaels’s brain against its bony casing with such force that a large blood clot formed in— side the back of his skull, putting increasing and potentially lethal pressure against the soft tissue. Because a major medical center was only a few miles away, Michaels reached the emergency room less than an hour after his wreck, but even before the CT scan was performed, it was obvi— ous that he’d suffered serious brain damage. Deeply unconscious, he responded only to pain, and then by extending his arms and legs rigidly rather than withdrawing from the pressure. The neuro— A Better Use of Resources ' 146 ' surgeon didn’t expect Michaels to survive surgery for the blood clot and the dislocated jaw and other injuries that he’d suffered in the crash. But the neurosurgeon was wrong. Despite the toll taken by twenty years of heavy drinking, Michaels’s thirty—five—year—old body endured the trauma of the accident and the stress of the operation. He emerged physically alive but suspended in a persis— tent vegetative state. For nearly two months, Michaels remained imprisoned in that limbo, unresponsive to commands, unaware of his environment, and unable to communicate. Then, to the surprise of the medical and nursing staff, he began to show signs of intermittent aware— ness—minimal but unmistakable evidence of visual and verbal interaction and the ability to follow simple commands. When his two older sisters and his mother came from out of state to visit, he recognized them. He even uttered a few words and sentences. Again, he’d defied his doctor’s predictions. Although Michaels has emerged from his persistent vegetative state, as I write his future is uncertain. He can move his arms and hands well enough to grasp and throw a soft Frisbee. With his left hand, he can even hold a pen and make marks on paper, but he has little if any control over his lower body. He seems to understand much of what people say to him, but his own speech is halting and difficult to understand, and the effort of maintaining consciousness quickly exhausts him. He may continue to recover brain function, but he may not. A stroke, a seizure, or a cardiac arrest could reverse the unexpected progress that he has made. For the severely brain— injured, the course of recovery is always unpredictable. With a few years of appropriate rehabilitation, Michaels might recover enough to be able to again support himself as a sidewalk artist. He might be confined to a wheelchair but be able to live in— dependently. But the services that he needs to improve cost money. Michaels is uninsured, and his family doesn’t have the resources to A Better Use of Remurcex ' 147 ' help him. Like thousands of other indigent victims of traumatic brain injury, he will probably be discharged from the hospital to a nursing home, Where Medicaid will pay for his custodial care but not his rehabilitation. This would be a tragedy, since it would leave him severely disabled but with just enough awareness of his situa— tion to suffer loss, regret, frustration, and loneliness. It may also be a false economy, since two or three years invested in helping Michaels recover as much of his abilities as possible might save the taxpayers thirty or forty years of keeping him alive but totally dependent. We spare no expense rescuing the seriously brain—injured but uninsured from untimely death, yet we seem unwilling to spend much, if anything, to prepare them for independent life. Once the trauma and acute—care teams have done their jobs and the patient is medically stable, further progress depends on the money avail- able. In Nguyen’s case, ample funds were there; in Michaels’s, they weren’t. A mason hit by a falling brick while working for a negligent but well—insured construction company will get state—of—the—art re— habilitation, often whether he seems to benefit from it or not. An uninsured man suffering the same injury While building a wall in his backyard will languish and decline in a nursing home, even if, like Michaels, he seems to be a good candidate for rehabilitation. As members of a technologically advanced, relatively affluent society, we share a responsibility to see that all patients who are brain—injured but not persistently unconscious receive care that allows them to function at the highest level that they can achieve. Meanwhile, however, we are in the midst of a cost crisis: by the year 2000, rapidly inflating medical costs are expected to exceed $5,500 for every man, woman, and child in the country—a total of $1.5 trillion, or about 15 percent of the nation’s gross domestic product. As the authors of The New Medical Marketplace have observed, in 1990 the United States spent nearly three times what Great Brit— ain did on health care, yet average life expectancy and most other A Better Use ofRerource: ' I48 ' health indicators were about the same in the two countries. One reason we have not seen more positive results from our substantially greater outlays is that too often we put massive amounts of our limited resources into cases where it cannot possibly affect the out— come, as in the care of Thon Nguyen, instead of into cases where it might have a chance of getting individuals out of nursing homes and leading independent (or semi—independent) lives, as might be possible with Donny Michaels. Of course, misallocating scarce resources among those with brain injuries is merely another illustration of how our current health care system, which is driven by misplaced financial incentives, fre- quently puts its money in the wrong places. Medicare, for instance, which represents nearly everyone of retirement age, spends enor— mous piles of cash on health care provided during the final six months of life. In any given case, most of the health care profes— sionals involved (but not always the patient and his or her family) often know that there is virtually no hope of prolonging life be— yond a few months—and sometimes know that aggressive treat— ment itself may diminish the quality of whatever life remains. In a number of such instances, informed patients might choose to see Medicare spend a smaller amount of money for palliative and lesser—skilled (or even unskilled) nursing care at home, thus allow— ing the terminally ill to die in familiar surroundings rather in the impersonal and expensive sterility of, say, a hospital’s intensive care unit. But as things are now, they cannot make such choices, either because they aren’t adequately informed about their options or be— cause they can’t afford this arguably more humane and cheaper alternative, which is not sufficiently covered by Medicare. As we lavish what is ultimately futile care on publicly or privately insured or well—off individuals with no hope of recovery, however, regular preventive medical treatment for the poor and uninsured, includ— ing poor children, is increasingly curtailed or unavailable. The up- A Better Use of Resoum’r ' 149 ' shot is that when the poor get sick, they wait until they are very sick and then visit public hospital emergency rooms—which costs society far more than catching the problems before they become medical emergencies. While this discussion may seem to be ranging far afield from traumatic brain injury, the fact is that in cases of brain trauma (among many others), we can decide to take money currently spent on cases that are hopeless and redirect it to cases that may bene- fit from medical science. By actually doing so, we could not only save lives but salvage them as well. And we could accomplish this worthy goal with no more resources than we are spending today. But to really do it will require all of us—voters, policy makers, and politicians alike—to come to a meeting of the minds about how to reform our health care system and to make hard but rational choices about what treatments make sense and for whom. When we fail to make necessary choices, we are in fact elect— ing to continue in the same untenable patterns that we fall into at present, so it’s important to focus on the human consequences of such inaction. When we give brain-injury victims the care they need to save their lives but withhold the care they need to reach their poten— tial, we compound the initial tragedy. Consider the case of Bobby Waldorf (not his real name). He was forty-five when his doctor told him that he had terminal cancer. Plummeted into a suicidal depression by the diagnosis, he shot himself in the head. His self— inflicted damage was extensive but not immediately fatal. A Life Flight helicopter rushed Waldorf to a hospital with a sophisticated trauma center, where he received excellent care soon enough after his injury to save him—at least for the time being. His neurosurgeon reported that Waldorf had literally blown his brains out. Because the bullet left unprotected tissue exposed, the doctor predicted that Waldorf would die of an unavoidable and A Better Ute of Resource: ' I50 ' .3- a- unstoppable brain infection. But after four months in the hospital, he was still alive. Although he’d survived, Waldorf had serious com— plications. He was paralyzed from the neck down, and his mental condition was severely compromised. He could engage in simple conversations but lacked the ability to function at a higher level of cognitive complexity. Ironically, the cancer that he had believed to be terminal was cured unexpectedly by radiotherapy. His sui— cide attempt had left him severely and permanently disabled, but he wasn’t dying. Because Waldorf was totally dependent, his wife, who had been appointed his legal guardian shortly after he shot himself, placed him in a nursing home not far from where she lived. After sev— eral years in the home, he developed ulcers on his legs, and they became infected. Bed sores like these are usually excruciating, but because Waldorf ’5 brain damage had severed the nerves to his lower body, he felt no pain. Even so, his bed sores needed to be treated, and unbeknownst to his wife, the nursing home sent him to an acute-care hospital at the University of Texas Medical Branch at Galveston, which accepts patients without regard to ability to pay. When Waldorf ’8 wife discovered that he had been transferred with— out her approval, she was furious. When the hospital asked her to consent on his behalf to antibiotic medication for the sores, she re— fused. She argued that since he was experiencing no pain, the sores did not need treatment, even though she knew that Waldorf might die from the infection. She said, “God should be allowed to finish what Bobby started.” The attending physician consulted me for advice. She believed that she had a duty as a doctor to treat a life—threatening condition, but she was hesitant to treat Waldorf over the objections of his legal guardian—at least not without some assurance that the law per- mitted her to do so. After consulting with the legal counsel for the hospital, I advised the physician that we should talk to Waldorf first A Better Ute of Resources - o to determine his preferences. Waldorf seemed to comprehend that his infected bed sores needed treatment; at least he was willing to undergo the recommended course of antibiotics even if he didn’t fully understand the details of what was being proposed. Under these circumstances, the physician felt that she was obligated to try to save her patient’s life, and I agreed. Although Waldorf ’s wife was unhappy about the situation, she didn’t persist in her protests. She did warn the hospital that she wouldn’t be able to visit her husband or attend to his personal needs as she had when he was in a nearby nursing home. She lived more than seventy—five miles from Galveston and needed to work to support herself. Waldorf ’5 treatment succeeded in curing his bed sores, but the nursing home that had transferred him to our hospi— tal refused to readmit him. The nearest facility where he could be placed was even farther from his wife than we were. She stopped visiting him completely. Since Waldorf had no other close family, he was cut off from his only important personal relationship. A few months later, Bobby Waldorf died alone at the distant nurs— ing home. In a world of more abundant resources or more rational policies, it would be easier to find a more acceptable solution to Waldorf ’5 problem. If he or his wife had had more money or better health in— surance, he might have been treated at a hospital closer to his home. If Whoever first told his wife that his bed sores required medical treatment had discussed the ramifications clearly, she might have been able to negotiate with the nearby nursing home to readmit him after he left the hospital. If his rights had been protected better from the outset, that nursing home might have been required to readmit him. When individuals so severely disabled that they can’t care for their own needs or assert their rights are cut off from their fami— lies and friends and lack other advocates, they face a fate similar to A Better Ute of Resource; I a Waldorf ’5. Many people knew that Waldorf ’5 needs weren’t being met, but his welfare was subordinated to the pressures of a system of care that could save his life but not preserve its quality. We must be fair to patients devastated by traumatic brain injury, but we must also be realistic. We should certainly direct resources toward improving assessment tools so that we can evaluate patients better and earlier, even as we recognize that determining an indi— vidual’s potential for progress may never be an exact science. Because severely brain-injured patients may survive for long peri— ods in an unconscious state, we need to establish policies that pro- vide the opportunity for recovery, even to the limited level possible for someone like Bobby Waldorf, but don’t encourage Futile efforts for hopeless cases like Thon Nguyen’s. Such cases will always be surrounded by ambiguity, and deciding what level of care is appro— priate in each instance will never be easy. But our current failure to confront this challenge is unacceptable. Our ambivalence com— pounds tragedy with inequity. The cost of maintaining a patient without medical complications in the limbo of permanent un- consciousness is about $150,000 per year. The same time spent in a good inpatient rehabilitation program runs around $300,000 annually. For what it costs to preserve the mere organic existence of two permanently vegetative brain-damaged individuals, we could help a devastated patient with a better prognosis achieve his or her highest potential, perhaps even trade a life of total dependency for one of self-reliance and contribution. A Better Ute 0f Resource: I I ...
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Chapter 8_A Better Use of Resources_pp 141-154 - - e i g h...

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