Walter Scott
From Cyberlaw
Walter Scott: The Letter Carrier, by Renata Bean
This is my BioTech Paper From CyberlawWiki
The Letter Carrier by Renata Bean Sophomore, Harvard College
Yesterday afternoon, as I was walking home from class, I saw a man lying on his side in the grass some distance past my building on Banks Street. He looked a lot like he was sleeping; but not enough to be sure. I stared, hard, squinting. He wore a blue shirt and shorts. It was when I saw his blue hat lying beside him that I realized, what had looked like a blanket, was a bag, a mail bag.
I rushed toward the man. He moved a little, writhed maybe. He lay on his right side, his left arm held tightly to his body, the wrist and hand limp. He was wincing and clenching his right hand in a fist. He looked as though he were trying to be still, as if to freeze what was happening to him, to preserve what life he had left. I asked him if he was having a heart attack. He nodded. He didn’t seem at all surprised that I was there, asking.
I’d never seen anyone dying before. Although both of my parents are dead, I certainly didn’t see them die; I never saw them at all. I was raised by my father’s brother Joe, and my Aunt Marilyn; not as their niece, but as their daughter. My real parents had three children before they were killed in an automobile accident; my older sisters were in the car, and died as well. Unlike my sisters who died instantly in the crash, my parents survived for a time, though both were fatally injured.
My father had been driving when their car was struck from his side. His legs were crushed; he had multiple internal wounds and was in a coma for two days. When he revived, he was physically battered; but, to everyone’s surprise, he was mentally quite healthy, aside from a loss of memory beginning just before the accident. He was told about the crash, about his girls, and about my mother, who doctors explained had experienced hemorrhaging in her skull. She was in a persistent vegetative state, but was thought to be deteriorating rapidly toward complete brain death. Most people my age probably don’t understand the difference. But twenty years ago, everyone knew. It was only five years after a then famous legal battle over a woman named Terri Schiavo.
The Schiavo case became a national issue in the United States, dividing the country mainly along previously existing political lines. Terri Schiavo, like my mother, was in a persistent vegetative state (PVS). In a PVS, a person is without higher brain functions associated with consciousness, but retains, for the most part, a functioning brain stem. This means that a PVS patient could continue to breathe, maintain a heartbeat, and go through normal sleep cycles, perhaps for years. PVS patients do not communicate however, and are without cognitive neurological function. They sometimes move spontaneously or even react to external stimuli such as opening their eyes in response to noise; but they have no actual awareness of their environment and do not communicate. They are of course unable to feed themselves.
Terri Schiavo was kept alive by use of a percutaneous endoscopic gastrotomy tube (PEG tube), which allowed food and water to be delivered directly to her stomach. Her guardian and husband Michael Schiavo determined on her behalf, and according to him, consistent with her wishes, to discontinue treatment. In other words, he demanded that the PEG tube be removed, allowing Terri to die from starvation and dehydration. The tube’s removal was vigorously opposed by Terri’s parents, who litigated to keep it inserted, and the nutrition flowing. They attempted to have Michael removed as guardian, tried to impeach his assertion that he was acting on Terri’s wish to refuse treatment, and also argued that the diagnosis of PVS was flawed.
The Florida Governor intervened for a time on behalf of Terri’s parents. Many, mainly conservative, U.S. Senators and Representatives, as well as the President, spoke out against removing the PEG tube. A special law was even passed with the intent to prevent the tube’s removal, or obtain its re-insertion, by giving jurisdiction over the case to the United States District Court for the Middle District of Florida. Other politicians, mostly Democrats, agreed that the matter was for the courts to decide, but without Congressional intervention causing more delay by giving Terri’s parents another avenue of appeal. The courts did decide eventually; and the PEG tube was removed once and for all on March 18, 2005. Terri Schiavo died about two weeks later.
The man I saw yesterday afternoon didn’t have two weeks, or even two hours. But I didn’t know that when I knelt down to touch his stiff arm as I dialed 911 to give our location. He opened his clenched fist and put his hand on mine. Then he looked at me. He didn’t seem determined anymore. His wet eyes filled with fresh tears; his arm softened; and aside from a flared nostril and a slight squint of his right eye that betrayed his physical pain, he looked relieved, maybe joyful. I smiled at him as tears streamed down his face. I don’t know how long we were there like that, or for how much of that time the operator was asking me what my emergency was. But just before I was pushed aside by an EMT, the man let go of my hand, and relaxed.
In the years following the Terri Schiavo case, several states passed laws forbidding the discontinuance of life-sustaining nutrients to PVS patients, unless there was either a written directive by the patient or clear and convincing evidence that the patient expressed an unequivocal desire to have such sustenance withheld. The clear and convincing evidence standard was judged based on a variety of factors including specificity of statements, frequency of statements, and the similarity of the actual circumstances to those contemplated at the time the desire was expressed. But the fervor for this increased protection didn’t last. There was a backlash against the post-Schiavo paternalism.
Right-to-die advocates suspected that the government’s actions were part of an effort to marginalize those who chose to die, and to cast them out as immoral. With the default position being to stay alive (a condition right-to-die advocates sometimes saw as continued suffering), they accused the government of manipulating the public’s fear of being starved to death while conscious but inarticulate, in order to achieve the further aim of altogether revoking the right to refuse treatment. Some enemies of the post-Schiavo legislation even claimed that the pretended concern for patients like Schiavo was merely part of an effort to overturn Roe v Wade by establishing an un-nuanced cult of life that refused to discriminate between human forms, even those that science could demonstrate were not conscious persons.
Suspicion of government and resistance to paternalism ultimately prevailed. There was a nationwide effort to either repeal the new standards or adopt laws allowing persons to simply opt-out of the post-Schiavo legislation without making out specific instructions for care termination. The reversion would again permit a guardian, subject to scrutiny, to make the ultimate healthcare decision on behalf of a PVS patient. In a short time, virtually every state returned to its pre-Schiavo standards. But this was not the full extent of the impact of the campaign against post-Schiavo legislation and the alleged unexamined respect for human forms, no matter what their condition. The pendulum had much further to swing.
A firefighter took my phone from my hand and said something, then threw it down. A minute later, the letter carrier lay bare-chested with four medics gathered around him. I couldn’t see what they were doing; but I was sure it wouldn’t revive him. A police officer asked me if I knew the man. She looked surprised when I said I didn’t. I realized then that I was crying. I told her I had just been calling an ambulance when one came. She confirmed that I wasn’t someone named Bell, who had apparently called before I did; then she asked me if I needed a ride home. I stayed instead. When the man had been taken away, I walked back to my building wondering how long he had waited there for someone to be with him.
In the thick of the battle between pre-Schiavo and post-Schiavo standards, before the shift in public opinion back to the former, experts had been lined up on each side of the argument, ready to fight over the wisdom of the positions. One group of those experts, a team of researchers from Harvard Medical School, was trying to find a reliable way to determine who would and who would not recover from a PVS. In early 2009, they published a paper detailing their research and explaining their findings. In it they argued that by using a novel analysis of standard PET scans it was possible to distinguish which PVS patients were actually in a persistent and irreversible vegetative state (PIVS) from those who were in a semi-permanent vegetative state (SPVS). They could even tell when a person moved over time from an SPVS to a PIVS, as often was the case.
It had been known for years that some PVS patients recovered with varying degrees of functionality after short periods, from several days to several months, with the level of functionality decreasing as the time in a PVS increased. Virtually no patients had recovered, with or without functionality, after several years in a PVS. Nevertheless, it was decided that any attempt to separate the group of those who might recover, from those who were certain not to recover, merely by noting how long a patient had been in a PVS, was inappropriate, due to the wide range of patient experience. Instead, researchers had been looking for a way to see a real difference between the brains of PVS patients that would definitely never recover, and the brains of those who might recover.
It was hoped that a physical marker could be found that would be reliable no matter how long the patient had been in a PVS, whether a few days or several months or years. This was the hope that the Harvard team answered when they demonstrated to the world that they could say with certainty that there were at least two classes of persons currently being diagnosed as PVS patients, and that they could reliably discern which ones had permanently lost the ability to emerge from their vegetative state.
A week after the accident, my mother’s prognosis was grim; but my father held out hope. He asked that she be tested to determine whether she was in a possibly reversible SPVS. Applying the new Harvard analysis, then little more than a year old, to a PET scan of her brain, doctors determined definitively that she was indeed in an SPVS. But because she continued to hemorrhage, they warned my father that in all likelihood, his wife would never regain consciousness.
Perhaps because so many people were uncertain of Terri Schiavo’s wishes, another discussion developed around her case, I believe partly for the purpose of rationalizing the decision to remove the PEG tube. It was a discussion of when exactly someone is dead. The Uniform Determination of Death Act (UDDA), which was originally endorsed in 1981 by the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, had long controlled the answer to that query; but in the wake of the Schiavo case, some were beginning to question the Act’s currency.
The President’s Commission had studied the topic of death, specifically brain death, in order to recommend a standard determination. It conducted its investigation in the shadow of research done by an earlier ad hoc committee at Harvard studying the irreversible coma. That committee had determined that irreversible coma patients with no brain function were in fact dead, or more specifically, brain-dead. In 1980, the National Conference of Commissioners on Uniform State Laws released a recommended UDDA. The conference recommendation was expanded and endorsed by the President's Commission the following year.
According to the 1981 UDDA, “an individual who has sustained either (1) irreversible cessation of circulatory and respiratory functions, or (2) irreversible cessation of all functions of the entire brain, including the brain stem, is dead.” By either the cardiopulmonary or the neurological standard, both cessation of function and irreversibility had to be established. Obviously, under this standard, persons who had no brain function, but were nevertheless breathing and had a heart beat, were dead. In other words, with the adoption of the UDDA, it was established that a person with a body full of otherwise living tissue, but no discernable brain function, was dead; not a person, but a corpse. Some felt that Terri Schiavo, even though she still possessed extremely limited brain function, was essentially dead. Judging from the inscription on her grave marker, which pointed to the day of her entering a PVS as the day she “departed,” Terri’s husband Michael believed she had died before the PEG tube was removed. (“Departed This Earth February 25, 1990 / At Peace March 31, 2005,”).
When I knelt beside the letter carrier yesterday, I wasn’t thinking about Terri Schiavo or PVS. I wasn’t thinking about brain death. I was just hoping he would live, and feeling a kind of dread that he wouldn’t. But when he touched me and looked at me, I felt close to him. I felt as if he had been waiting for someone, anyone, to be with him, so that he would not die alone. I sensed his joy in passing in the company of another, in sharing his last moments. I was glad to be the one who stayed with him. But I wonder now whether I was really with him, whether he was even there.
Almost immediately after the Harvard paper in 2009, there was a discussion of whether PIVS patients, like brain dead patients, were actually dead. President McCain, reluctantly, appointed a new commission to revisit the issue of determining death. The commission conducted a six month investigation. Public debate raged. By the time the commission made its recommendation that real PIVS patients be considered legally dead, the vast majority of the scientific community had been convinced, and much of the public had as well. However, there was a significant and vocal group called the Protectors of Unconscious Persons Society (PUPS) who opposed the inclusion of even a truly permanent and irreversible vegetative state in any definition of death.
Many of those who opposed giving PIVS the same status as brain-death were also opposed to abortion. They took advantage of the network already in place for the old cause and used it for the new one. PUPS argued that in addition to exhibiting a fundamental lack of respect for human life, the new guidelines represented a threat to healthcare by inviting hospitals to hastily harvest organs from live patients, bypassing the dead donor rule, which had long assured donors that they would not be killed by organ extraction as opposed to their terminal condition. PUPS members lobbied so effectively that 19 states, including Florida and Texas, took two years to adopt the revised Uniform Determination of Death Act of 2010, even in the face of hard evidence that PIVS patients were permanently unconscious.
Many other states were quick to adopt the new guidelines however. California, Illinois, Massachusetts, and New York led the way. In response to concerns that some organ-donor SPVS patients would be hastily and mistakenly farmed after passage of the new death guidelines, most of these states simultaneously instituted potentially lengthy donor review policies. Under the new donor review systems, if no written donor authorization existed prior to a patient’s entering into a PVS, brain death, or cardiopulmonary cessation, interested parties (including immediate family members) could sue for a complete review of the patient’s intentions. These laws resembled watered-down versions of the post-Schiavo laws, only now they were applied to organ donation.
Even with the potential delays caused by the new review procedures, and the anticipated large number of persons who would insist on being maintained according to the old standard of death, it was predicted that the number of organs suitable for transplant would skyrocket after the revised UDDA became effective. Indeed, the number of transplantable organs, especially hearts, grew rapidly. But that was not the most striking consequence of adding PIVS to the UDDA, certainly not for my family.
A week before California adopted the revised UDDA, my mother slipped from an SPVS to a PIVS. With a stroke of the governor’s pen, she was dead. Like many enthusiastic supporters of organ donation at the time, my mother had authorized the use of her body in its entirety for “any and all procedures to benefit the advancement of medical science,” even if she did not meet the cardiopulmonary formulation of death according to the UDDA; and, “to the extent permitted by current or future law, even if [she was] not completely and irreversibly dead, but merely completely and irreversibly unconscious.” Her only limitation was that her guardian (my father), if mentally capable, had to consent to such experimentation, including the type, scope, and location of the experimentation, as well as the final disposition of her remains. My father had contacted UC San Diego’s medical school to negotiate the gift two days before Governor Boxer signed the revised UDDA into law.
It followed from the original 1981 UDDA, that a person who had suffered brain damage sufficient to kill off brain function, but who could be kept otherwise functioning on a respirator, was dead. Such corpses (or neomorts) would make excellent organ donors because their organs could be kept functioning for a long period after death. This longevity would better facilitate the harvesting and transplantation process, which could then be accomplished at the convenience of the recipient and the physicians performing the surgery.
The problem with using neomorts for transplantation was that very few people actually died in a way that left their organs intact. While there were many persons who died after a refusal of treatment, like Terri Schiavo, it was common that their organs were spoiled by the death process. In Terri’s case, had she been a donor, her vital organs would have been starved and dehydrated. Likewise, when a patient has a respirator removed, many organs suffer deterioration from lack of oxygen during the wait to ensure irreversibility of cessation.
The potential for recently brain-dead human corpses that had still-functioning bodies, to be used as organ storage banks was contemplated well before the original 1981 UDDA seemed to permit it. Nevertheless, neomorts had not been widely exploited in this way prior to the revised UDDA of 2010, which caused a dramatic increase in the population of neomorts. Only then did it seem that there would be enough neomorts available to begin using them as organ banks in earnest. Of course, to many, the practice was more ghastly than so called partial-birth abortion. But unlike partial-birth abortion, this practice had the potential to save many lives. To allay concerns of involuntary use, heightened standards of proof were established in most jurisdictions to show that the neomort, while alive, had specifically authorized this kind of donation process.
Was the man I comforted a neomort? What if he had suffered a stroke just before I arrived; could the movements that I saw have been merely automated? Had he really nodded yes when I asked if he was having a heart attack, or had he just been trembling? Perhaps his eyes watered because they were irritated, and his face looked grimaced because he was paralyzed. He put his hand on mine; but he didn’t grab it; maybe he was just responding to stimulation. Maybe I saw what I expected to see, a responsive person, when what I really touched was an unconscious person, or even a corpse. I wonder if he had family. I wonder if he was a donor.
My parents had many friends; but it was family that they long for, perhaps because they had so little. My mother Renata Pittore was born in New York, the only child of Italian immigrants. My grandmother had two miscarriages before and two miscarriages after giving birth to Renata. My father John was an eighth generation Bean whose family had emigrated from Ireland in the early 1800s. They flourished at first, but dwindled after the 20th century’s Great Depression. Before John married Renata, in 2004, my uncle Joe Bean was his entire family.
John and Renata were discouraged when they were unable to conceive for the first two years of their marriage. By the time they had my oldest sister with the aid of in vitro fertilization, the last of my grandparents, my mother’s mother, had died, leaving my uncle as my parent’s only living relative. After their first success, they pursued children vigorously, with the assistance of in vitro fertilization each time. My mother was pregnant for nearly 40 months of the last four years of her life. She miscarried what would have been her fourth child two months before the accident.
When my father contacted UCSD in late 2010, the university hospital had two neomorts being maintained for transplant and one for classroom use. After hearing my father’s proposal, they transferred all three to other UC campuses and dedicated the resources to my mother. My parents were both transported to the university medical center on November 25, 2010, Thanksgiving Day; she had been in PIVS for more than two weeks; and it had been just under a month since the accident. My father’s physical condition was deteriorating rapidly. He still suffered from internal bleeding; his kidneys were badly damaged; and his two compound fractures had become infected.
Official university records indicate that my father’s sperm was extracted one minute before his death on December 1st. My mother’s brain hemorrhaging continued slowly, and her body shifted to complete cessation of brain function later that month. All of the necessary hormones had to be injected and closely monitored since her brain was no longer functioning. But, as planned, she received her last successful in vitro fertilization three weeks later. The following fall, I was named for her.
As the only child ever conceived after the death of her parents, and carried to term by her mother’s neomort corpse, I was quite famous as a baby. Obviously, I don’t remember any of it; but I gather much of the fame would have been unwelcome. I’ve seen pictures of rallies against neomort maternity in which people are holding signs calling me “Satan’s Spawn.” There was a series of print cartoons that pictured me as a member of the cast of an old broadcast television show, the Adams Family; they referred to me as “NeoMorticia.” There were supporters too of course. Much of the scientific community was sympathetic. The doctors at UCSD were proud of their work and totally unapologetic; neomorts held incredible promise they said.
Despite their potential to aid discovery, the use of neomorts became highly regulated after the initial public outcry. Most of the horror around the subject has long since subsided. Neomorts are still used for instruction and drug testing, as well as organ storage. Neomort maternity was outlawed in every state, however, except under very limited circumstances, like maintaining a pre-death pregnancy. Other countries have their own neomort regulations; but most have chosen to use them only for medical instruction and short term organ storage.
Having children is a choice that we respect in the ordinary sense. My parents wanted children more than anything else in this world. I’m sure my mother would have given her life for me, let alone her body. Before he died, my father ensured that I would have a loving family to care for me. I will never understand how such a personal decision, one that forced me upon no one but my willing aunt and uncle, was wrong. I try not to be hurt by the fact that many people believe my birth was an abomination that should never be repeated. As I enter my twenties, I’m often glad that no one knows who I am anymore. But I wish I weren’t ashamed to tell them. ◙
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