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1 We Are the Dead Men

Mind over Matter

The human body is a fascinatingly peculiar thing: its size can range from under twenty inches at birth to an adult stature of more than six feet, and as it matures it masters the ability to move through the world, first by rolling over, then later, perhaps, by progressing on all fours in anticipation of a lifelong bipedal stride. It can propel itself on a bicycle or in a wheelchair, or run at breakneck speed. Beneath the skin one encounters a dizzying array of systems that together enable the body to survive as well as perform astonishing tasks. As the artful renderings of anatomist Andreas Vesalius (1973) illustrate so vividly, the body's inner workings include the web of the nervous system, an interlocking musculature complex, an extensive vascular network, an elegant skeletal framework, and a sophisticated amalgamation of internal organs that can draw oxygen from the atmosphere, pump and maintain blood at a stable volume and temperature, and filter and expel inhaled, ingested, and absorbed toxins.

The brain is frequently described as the nexus of control for this body complex. This single organ drives the inner workings in exquisitely complex ways, enabling us to move, breathe, and sense the world around us. Whereas the brain, as the control center, governs bodily functions, the mind is its abstract counterpart, serving as the seat of learning, the emotional center, and the locus of the self. The mind, understood as such, enables us to create, preserve, and recall memories, and to form words into speech, manual signs, and written text; it also generates dreams. We are thus simultaneously organic creatures, cognitive beings, social persons, and private selves, categories of existence that are all inextricably linked to this mind-brain complex. The mind-brain is always at work, regardless of whether we occupy conscious or slumbering states. This sophisticated complex defines us as alive, as functioning, and, ultimately, as human beings (Damasio 1994; 1999: 3-31, 317-55; Sacks 1973, 1985).¹

This exercise in describing ourselves in reference to the mind-brain may seem truly odd; my attempt to do so certainly strikes me as such. For one, it is shaped by an extreme form of biological reductionism; for another, it is an exclusively secular vision, allowing no room for musings on the soul, for instance. My intention is to underscore the ease with which we comprehend this view of our bodies. (Whether we embrace it is another matter, of course.) American culture is permeated by scientific reasoning, represented quite obviously by the pervasiveness of biomedicine as a dominant system of thought. Indeed, we frequently allow ourselves to be described in terms derived from biology, physiology, and anatomy, permitting internists, pulmonologists, cardiologists, and neurologists to probe and ponder us when all is not right with our health.

As philosopher Drew Leder reminds us, it is precisely at those moments when the body breaks down that we become painfully aware of its existence (Leder 1990; Sacks 1998), and biomedicine provides a framework for comprehending bodily disorder. At moments of sickness we typically ask, “What is wrong with me?” (cf. Zola 1978), and the answers are supplied most frequently by physicians, nurses, or other specialists who explain, “You have a lung infection,” “You've broken your leg in two places,” or “You've sustained a concussion.” Thus, within medical parlance we are frequently reduced to our functioning body parts. More important, we might accept this model of the body unquestionably and embrace such diagnoses and their associated treatments with gratitude.

Medical anthropologists have long argued that a pervasive weakness within biomedicine is the insistent separation of the body and mind in clinical discourse and treatment. Biomedicine privileges knowledge concerned with the body's biomechanics, often to the exclusion of both the inner workings of the self, or emotions, and the individual's place within larger social or ecological milieus. For instance, surgery occupies a more prestigious position in the biomedical hierarchy than does psychiatry, and psychosomatic disorders may quickly be dismissed as patients' fantasies rather than being read as embodied, covert forms of protest and misery (Kleinman, Das, and Lock 1997; Sawday 1995; Scheper-Hughes 1992; A. Young 1997). Today even psychotherapy is rapidly being displaced by approaches that favor drug therapies designed to tackle problems in brain chemistry (Luhrmann 2000). In contrast, within medical anthropology one encounters an established tradition of arguing for greater mind-body harmony in medicine, with proponents frequently drawing on cross-cultural data to illustrate how other healing traditions reflect more holistic approaches to human suffering (Murphy 1987; Scheper-Hughes and Lock 1987).

Nevertheless, a dominant cultural logic insists on the primacy of the mind-brain as a defining principle of our humanity. We are certain, after all, that we most definitely are not chimps, or dolphins, or lizards. This sense of difference not only springs from our morphological uniqueness but is driven, too, by a widely accepted premise within American culture that our brains are radically more sophisticated than those of all other creatures in the animal kingdom. The success of anthropology as a social science is certainly driven by such principles. Our uniqueness as a species is marked by our ability to generate complex social systems, sophisticated forms of symbolic communication, and creative technological innovations that enable us to transform hostile environments into habitable ones. In addition, arguments about our special abilities are phrased in evolutionary terms, and they rest heavily on assumptions concerning the primacy of the human mind. As Rene Descartes so famously asserted, cogito, ergo sum (“I think, therefore I am”; Descartes 1999 [1637]). Within a host of other specialized fields—such as sociolinguistics, cognitive psychology, neuroscience, and artificial intelligence—it is possible to argue that the mind-brain complex defines how unique we truly are.

Against such premises, organ transfer emerges as an intriguing realm of medical practice because it insists on these forms of mind-body bracketing, yet specialists in the field still struggle to maintain a stable boundary between the two. Consider these sorts of contradictory circumstances. On the one hand, the identities of organ recipients are often reduced to their transplanted parts, so that at transplant events recipients are relegated to such categories as “the hearts,” “the lungs,” or “the kidneys.”² Organ donors, too, are rapidly reduced to the status of bodies or body parts because both procurement professionals and transplant surgeons may conceive of them primarily as repositories of reusable organs. On the other hand, cadaveric organ donation in the United States is possible because we legally sanction brain death as true death. The label of death is applied even though the artificially ventilated donor-patient remains warm to the touch, appears to breathe, and has a heart that continues to beat within its own chest. Even more bewildering is the fact that brain dead organ donors are routinely anesthetized at the onset of procurement surgery.

When we accept brain death criteria, as defined within a clinical framework, it is because we recognize that what matters is whether the mind, not the body, has ceased to function. In other words, we care greatly whether the essence of the individual person is no longer there, and thus the body's significance in defining the self slips away. A comatose patient, while assisted by “life support,” might thus be described as a broken mind-brain inhabiting a dormant body. In contrast, a brain dead individual (and, thus, an organ donor) is a mindless and dead—yet artificially maintained and thus temporarily functioning—body. The conundrum posed by brain death criteria problematizes certain assumptions about our selfhood, our humanity, and our social worth as (non)sentient human beings. It also uncovers subtle forms of medical unease over what we are certain of, versus what we can never truly know, about human death. Particularly troubling for all concerned parties are questions about the timing and detection of death, questions that quickly degenerate into existential quandaries. This is most clearly marked by the tension created between brain death and cardiac death as markers of true or absolute death. Are organ donors dead once they cease to be sentient beings, or does everyone secretly believe that true death occurs only when the body itself expires?

Such questions arise because of a flawed logic that insists on death as an either-or category of (non)existence. As we shall see, a range of involved parties understands death in more creative and flexible ways, although opinions remain muted, because to voice them publicly and openly is regarded as a dangerously transgressive act. Alternative visions defy a dominant ideological premise of organ transfer, where death occurs at a precise moment in time, coinciding with the legal declaration of the cessation of brain function at, say, Tuesday, March 9, at 5:06 p.m. If one embraces organ transfer as a social good, then one should accept, unquestionably, that brain death is a marker of true or absolute death. Nevertheless, subsequent cardiac death, or the death of the body, creeps in as contradictory evidence for nearly all concerned parties.

In response to these troublesome contradictions, Margaret Lock (2002), in her comprehensive study of brain death in North America and Japan, has described organ donors as a category of the “twice dead” (cf. Savulescu 2002; Shrader 1986). As she illustrates, this model of the double death, so to speak, is pervasive in transplant contexts: first declared brain dead, the organ donor later experiences biological death when his or her organs are removed during procurement surgery. As Lock demonstrates, historicized cross-cultural comparison proves especially helpful for underscoring that this is a Euro-American biomedical construction (or struggle). In contrast, in Japan, proponents of brain death criteria (and, thus, transplantation) have encountered especially hostile resistance from the lay public precisely because of the widespread understanding that the body houses an individual's spirit or essence, and to remove body parts (particularly the heart) threatens a spirit by trapping it in a dangerously liminal state between life and death (Lock 1995: 7). Unlike in the United States, where key legislation supporting organ transfer spans the 1960s to the 1980s, Japan's Organ Transplantation Law took effect only in 1997. In an effort to recognize a plurality of voices, this law (inspired by the “conscience clause” of New Jersey's Declaration of Death Act) allows self-designated donors to “choose between brain death and traditional death by writing their preference on their donor cards” (Morioka 2001). In essence, Japanese citizens can designate what form of death they consider legitimate. The Japanese public nevertheless remains skeptical of brain death and critical of transplantation in general (Lock 2002), which frustrates Japanese transplant surgeons, a few of whom may have received some training in American medical or research institutions.

In contrast, within North America (and, more particularly, the United States), brain death criteria overcame legal hurdles much earlier because of a more widespread acceptance of mind-body dualism, which stresses that the self resides in the mind. As Lock and Christina Honde (1990) illustrate, the arenas that circumscribe ethical debates over medical practices expose important cross-cultural differences. Whereas in the United States ethical discussions that shape transplant policy have involved overwhelmingly those working within the clinical realm, national health decisions in Japan are regularly subjected to heated debate in the larger public sphere.

In the United States, official medicolegal rhetoric precludes the possibility that one can die twice. As a result, challenges are quickly silenced, a phenomenon that is especially pronounced in the realm of organ transfer. Nevertheless, anthropologists have long known that normative assumptions are regularly accompanied by unconventional thoughts and actions. Anthropologists know, too, that cross-culturally there are many ways to die. As data from a range of societies attest, death is not understood universally as the moment when a person permanently loses consciousness, or has no pulse, or when a body turns cold and gray. Instead, death encompasses a range of other possibilities far less biologically deterministic in their outlook. Separating definitions of death per se from what are often extraordinarily complicated ritualized forms of mourning may be difficult (Bloch and Parry 1982; Metcalf and Huntington 1991).The cross-cultural perspective reveals the limitations of the clinical assertion that the threshold between life and death is clearly marked by the measurable cessation of brain or bodily functions. Rather, anthropologically speaking, death should be viewed more broadly as a social process that allows for the possibility that a person may gradually slip away.

This is, however, a dangerous assertion within the realm of organ transfer because it ultimately destabilizes a key component of transplant ideology. In official contexts—ranging from clinical to forensic—great care is taken to identify the exact moment when death occurs. More specifically in reference to organ donors, a shift to considering death as a gradual process would inevitably generate questions about how a donor died and, potentially, who might be responsible. Such questions would expose hospital, procurement, and transplant staff to relentless lawsuits driven by accusations that these professionals orchestrate the deaths of vulnerable patients under the guise of ICU care in anticipation of the subsequent surgical removal of vital organs.

Such accusations in fact shaped the first legislative initiatives generated as protective measures in response to early instances in which transplant surgeons faced criminal charges for murdering donors for their organs (Starzl 1992: 148). I regard as absurdly simplistic the assertion that organ procurement is a medically sanctioned form of murder. As an anthropologist, I am nevertheless intrigued by the paradoxes that arise in response to this particular form of hospital death. Among the most striking developments is the manner in which transplant ideology most certainly shapes sanctioned, public sentiments and actions. Thus, I have learned to listen carefully to what people express privately as their personal perceptions, and how these may at times coincide with, and at others challenge, medicolegal rhetoric specifically about brain death. What if, instead of insisting that death can (or must) be linked to a specific, timed event, we allow it to occur incrementally, its progress marked by discrete episodes detectible sometimes by clinical tests, and at others through heartfelt sentiments of love and loss? As I will show, if we indeed pay close attention to this seepage of covert sentiments, beliefs, and turns of phrase, we discover a wondrous counterreality to the official rhetoric and public face of organ transfer in America.

A MOST PECULIAR DEATH

A Brief History of Donation

Brain death is a truly peculiar category of human experience because its mere definition dictates that professional and lay parties alike must embrace medical criteria that contradict commonsense understandings of the evidence of life. Brain death was first supported by medical specialists who, by the 1960s, were increasingly confronted with the conundrum of dying patients who were nevertheless sustained artificially on respirators. Such specialists' recommendations later shaped federal policy and state-by-state legislative initiatives that render the practice of acquiring organs from patients diagnosed as “brain dead” both legally and socially acceptable. A relatively unchallenged opinion voiced within medical circles today is that brain death criteria were most certainly developed to produce a supply of transplantable organs (see, for instance, Cowan et al. 1987; Fox and Swazey 1978, 1992; Lock 2002; Starzl 1992; P. Young and Matta 2000).

The sanctioning of brain death criteria, alongside the surgical harvesting of organs, initiated a significant ideological shift in twentieth-century medicine. This shift is reflected quite clearly in the language offered by liver surgeon Thomas Starzl, who twenty years ago explained it thus in his memoir The Puzzle People: “With the wide acceptance of brain death in the Western world, all injured patients who come to the hospital in a helpless condition could have a fair trial at resuscitation. Then, in an orderly way, it can be determined whether these people already were dead but with functioning hearts and lungs, or if they had a chance of restoration of brain function. The quality of care and the discriminate application of such care to terribly damaged people was one of the great fringe benefits of transplantation” (1992: 148). Although Starzl's language may strike the reader as calculating or macabre, it nevertheless exposes a seasoned surgeon's willingness to speak frankly about the early years of transplantation. Among the most revealing developments is the manner in which ventilator use marks a clear watershed. Not only could this new technology sustain brain-damaged patients, but, when paired with cardiopulmonary resuscitation, the ventilator permitted health professionals to revive the dead, assess their subsequent status, and then, through an unusual form of triage, ultimately determine whether subsequent care should focus on healing or in preparation for organ procurement as yet another form of death. Although organ procurement is never described in these terms by involved professionals, such conditions have in fact become the mainstay of contemporary practices in the realm of organ transfer.

Thus, some patients might well be described as the “thrice dead” because they die, first, from a head injury, accompanied by cardiac and/or pulmonary crisis, only to be resuscitated by emergency medical technicians (EMTs) through CPR and then placed on a ventilator. These patients' second deaths, so to speak, occur when they are pronounced brain dead while still sustained by machines. The third (and final cardiac) death, or death of the body, occurs during procurement surgery. The importance of CPR was underscored by a statement made during an interview in 2003 with Octavia Zamora, who works for an organ procurement organization based in a western state. In Octavia's area, the speed limit had been raised from fifty-five to seventy-five miles per hour only a few years before we met; local EMTs linked subsequent drops in donation levels to the fact that victims of high-speed car accidents typically are so badly injured as to render CPR impossible. Under earlier limits of fifty-five miles per hour, there was a greater possibility of saving accident victims, who might then be declared brain dead in the ICU.

Body Trades

Much has been written on the history of transplantation in the United States, and thus I mention only the significant legislative strides that have rendered procurement a medical reality in this country.³ The advent of American transplant medicine is frequently traced to the first successful attempts at kidney transfer between identical twins in 1954. Many Americans (particularly if they are in their late forties or older) are most familiar with the highly publicized story involving South African surgeon Christiaan Barnard, who in 1967 removed a healthy heart from the body of Denise Darvall and transplanted it in Louis Washkansky, who survived for eighteen days. Within the United States, the growing desire to harvest organs from patients sustained on ventilators provided the impetus for the Harvard Ad Hoc Committee, which argued in 1968 for “irreversible coma” as a new category of death. The committee's recommendations formed the basis for the Uniform Anatomical Gift Act of 1968, which stipulated how anatomical gifts—including transplantable organs and whole bodies bound for medical research—could be offered either by oneself or one's surviving kin. As such, the act simultaneously sanctioned brain death criteria and early donor campaigns and criminalized the selling of human organs for profit.⁴

The development and marketing of the potent immunosuppressant cyclosporine by the early 1980s subsequently ensured transplant's success, enabling patients to stave off the short-and long-term effects of graft rejection.⁵ Yet, again, legislation trailed medical accomplishment. In 1982, Congress passed the Uniform Determination of Death Act, whose central purpose was to standardize the “proliferation” (CUSL 1980) of criteria found in an array of states' statutes; of particular importance was the goal to define brain death in legal terms. By 1987 this act was adopted in some form in nearly all states. The regulatory aspects of organ transfer were defined in 1984 by yet another key piece of legislation, the National Organ Transplantation Act (NOTA). Organs were to be distributed through the Organ Procurement and Transplant Network (OPTN), a contract that has been managed since 1986 by the United Network for Organ Sharing (UNOS), which is currently based in Richmond, Virginia.

Today, nearly all states—and even most major cities—can boast a transplant unit stationed within at least one of their largest hospitals. Currently, all such units are linked to a network of fifty-nine OPOs throughout the United States and Puerto Rico.⁶ These are grouped, in turn, into eleven geographic regions. UNOS, as a federally funded regulatory agency, oversees the activities of the nation's OPOs, maintaining waiting lists and establishing national guidelines designed to ensure that organs are distributed fairly throughout the country. The logistics of placement are complex; briefly, as explained by the Association of Organ Procurement Organizations (AOPO), a set of predetermined guidelines is based, for instance, on patients' levels of medical urgency, length of time on the relevant waiting list, body and/or organ size, and blood type.⁷ Organ transfer in the United States has taken on an international character, too: some patients hail from other nations; organs are at times procured from noncitizens who die in U.S. hospitals; and procured tissues and, to a lesser extent, transplantable organs may sometimes travel to other countries.

There is a national trade in transplantable human organs in the United States and, once procured, organs are most certainly transformed into precious commodities. Although buying and selling solid human organs is illegal, transplant medicine is among the most lucrative forms of medical practice within this country.⁸ The movements of transplantable organs, as precious goods, are tracked with extraordinary care. Although most organs stay within the region in which they were procured, UNOS ultimately dictates their placement. Thus, if UNOS determines that the best match for a heart procured from a midwestern region is a patient based in a Southern California hospital, the midwestern OPO cannot override this decision. Southern California, however, then assumes the debt of a heart that must later be repaid to the region of origin. OPOs, with assistance from UNOS, tally such organ exchanges and debts with great care. In short, organ transfer defines a peculiar segment of interstate trade in America.

The rhetoric of organ transfer serves to deny and even disguise the fact that transplantable organs are highly valued medical commodities. Surviving kin receive no financial recompense for the organs they “donate” as “gifts of life.” Nevertheless, all parties understand on some level that organ transfer is driven in part by the desire for profit. In the words of a longstanding director of a midwestern OPO, “Health care is a business…let's not fool ourselves.” Although they are nonprofit organizations, OPOs certainly charge for their services (at the very least this covers donor care prior to, during, and following procurement). These costs are then passed on to transplant recipients, who are also billed for their respective surgeries, as well as for pre-and postoperative care. It is a public myth, however, that transplants are an option available only to the nation's wealthiest individuals. Few people in this country can afford to pay for a transplant out of pocket; nevertheless, with the assistance of savvy transplant social workers, patients from a wide range of backgrounds acquire support either through employer insurance plans (if not their own, then that of a parent or spouse), or by liquidating their assets, or by qualifying for disability and Medicaid coverage. The most destitute patients sometimes acquire support from private foundations or even from their own surgeons, who may dip into pools of research funds to help improve or save the lives of their most financially desperate patients.

Donor Histories

The human body is a tremendously profitable source of reusable parts. Together with the major organs (heart, liver, lungs, kidneys, pancreas, and small intestine), a range of others, categorized as tissues, include approximately fifty regularly salvaged body parts.⁹ Surviving donor kin quickly become aware of the complexity of this economy of the body, for by law they must work their way through a complicated checklist of reusable parts once they have consented to donation. The process of donation, however, is far more complicated than the mere act of completing and signing a consent form. Given that the majority of my readers will be unfamiliar with the process, I provide an overview here.

The vast majority of organ donors' deaths result from head traumas that are sudden and thus unexpected, and many are violent as well. Primary causes include motor vehicle accidents (car or motorcycle collisions, or cyclists or pedestrians being struck by moving vehicles); gunshot wounds to the head (ranging from the misuse of firearms by children to intended acts of violence between teenagers or adults); suicides (involving a handgun, hanging, or carbon monoxide poisoning from car exhaust fumes); and severe brain hemorrhages (in adults and children). Whereas in the past age limits were set on donor eligibility, today virtually anyone—ranging from newborns to octogenarians—might qualify for donor status. Nevertheless, a widespread understanding within this specialized medical community is that by far the best donors are young people because they are assumed to be healthier (that is, less disease-ridden) than older adults. At work here, too, is the understanding that the deaths of children are especially tragic, and so it is most important that some goodness emerge from the horror of their sudden loss. Fifty years ago it would have been impossible to save—or salvage—brain dead patients. Once identified as potential donors, the severely brain damaged may later be disqualified for a host of reasons that can include (but are not limited to) failure to meet brain death criteria, detected infections, organ damage, or medical histories marked by certain cancers. Currently, one becomes a donor in the United States if next of kin grant consent. Even in those states where donor cards are legally defined as a form of advanced directive (a recent trend I will raise again later), procurement staff remain reluctant to take organs in direct opposition to kin. At the onset of my research, patients were automatically disqualified as donors if they were even suspected of having HIV, and later hepatitis B and C virus, infections. Advancements in immunosuppression, on the one hand, and treatments for AIDS especially, on the other, have led to a recent shift in accepting organs from such patients for transplantation in others who bear similar infections. These and other “marginal” donors now define an increasingly common source of “extended criteria” organs (Reynolds 2005) as surgeons, driven by organ scarcity anxiety, seek transplantable parts for growing numbers of patients in need. I will address the clinical and social relevance of “extended criteria” later in this chapter and again in chapter 4.

The artificial ventilator now routinely enables EMTs, as well as staff based in emergency wards and trauma centers, to administer CPR to damaged patients' bodies, place them on artificial respiratory support, and then, through the assistance of drug therapies that control pain and blood pressure, for instance, maintain such patients in relatively stable states in ICUs. Many procedures are performed on patients already pronounced dead as a prelude to acquiring consent and procuring their organs. It is at these highly liminal moments in clinical care that procurement professionals become intimately involved with patients and their kin. Although such policies are not necessarily enforced, the majority of states in this country now mandate hospitals to alert their local OPO if they have a patient whom they believe may soon be brain dead. Some states even require hospitals to report all deaths to the OPO so that field staff can assess all deceased patients as potential organ and/or tissue donors. Whereas a decade or so ago many OPOs were based within hospitals that specialized in transplantation, today this is the exception rather than the norm. Typically, OPOs maintain separate offices off site, working instead with a network of hospitals that may actively assist in identifying organ donors and/or perform transplant surgeries.

Once alerted to the potential demise of a particular patient, OPO field staff enter the hospital and perform a range of tasks. Sometimes one person performs all the necessary tasks; in larger OPOs the duties may be split between two people, in part because the work at either end is exhausting, especially when a case extends over the course of several days. As one OPO staff member explained, it can be an emotionally trying experience for the same individual to tend to the clinical needs of a depersonalized body while also trying to comfort a family in the throes of grief. Here I offer perhaps the most complex version of OPO hospital work, involving a pair of employees who work side by side, as typified by the style of a large, urban OPO whose staff I observed during the mid-1990s. Following this account, I will briefly describe other arrangements.

Knowing what to call OPO staff is itself problematic: many procurement professionals employ the title “transplant coordinator,” but this is both confusing and misleading for several reasons. First, staff who work directly with recipients in transplant units also go by this title; second, the work of OPO staff in fact focuses specifically on procurement (otherwise known as “retrieval” or “harvesting”) and donation, not on transplantation. Furthermore, OPO field duties involve both clinical and counseling roles, and so in my discussion here I use labels that reflect these responsibilities. When duties are split between two staff members, their activities typically play out as follows. The first, or what I will call the clinical coordinator, works directly at the bedside of a potential donor. If brain death is thought imminent, the clinical coordinator often assumes duties previously performed by hospital nursing staff, who retreat in order to care for other, more viable patients. The clinical coordinator takes regular readings of the patient's status, and he or she may even write orders on the patient's chart, providing directives for administering medications, especially vasopressors (or “pressors” for short) that control drops in blood pressure. Clinical coordinators generally have backgrounds in critical care nursing, so that many have worked previously in hospital ICUs. It can be difficult for lay visitors to distinguish clinical coordinators from in-house nurses because they frequently dress in hospital scrubs, wear no badge that identifies their employer, and may make little effort to clarify to family members for whom they actually work.

The clinical coordinator may be paired, in turn, with a family counselor, someone who arrives dressed in a suit or somewhat formal street clothes. The primary duty of family counselors is to provide emotional support to family members; typically they explain that they specialize in helping families cope with end-of-life issues. They also respond to a range of pragmatic concerns. For instance, when overtaxed nursing staff are too busy to help family members find meals or coffee, or a private room in which to talk or rest, the family counselor will respond to these needs. As with their clinically trained partners, their purpose (and employer) may be left unstated at least at the onset. Family counselors generally wear no identification badge (save that required by hospital security), allowing them the option of passing as hospital employees rather than proclaiming outright that they are from an OPO. Such practices are justified by OPO employees who stress the importance of establishing social bonds with kin before raising the topic of donation. A badge that declares that one works in organ retrieval would subvert their ability to breach the topic gradually with kin, and only once they have gained their trust as compassionate health workers. The fact that many OPOs have altered their names in recent years also facilitates this process. Whereas ten years ago most agencies bore composite names consisting of their state or region plus “OPO” (for instance, NWOPO or Northwest Organ Procurement Organization), many have assumed new titles that emphasize organ donation as an act that saves lives (thus, NWOPO is now LifeCenter Northwest).¹⁰ Today only a few OPOs are based within hospitals, but ten to fifteen years ago such relationships were common, only further complicating the duties of procurement work. I can only hypothesize at this point, but drawing from my data culled from fourteen OPOs of a range of sizes, it appears that employees from smaller offices are less likely to attempt to pass as hospital staff. The question of how OPO field staff should introduce themselves to the kin of prospective donors is currently a topic of heated debate. As my descriptions reveal here, procurement strategies in the United States are, oddly, both compassionate and covert.

Successful procurement rests heavily on the shoulders of family counselors. Particularly important is their skill in engendering trust among family members, for without this their attempts at procurement will fail. In those cases where family members experience callous treatment from overextended hospital staff, the OPO family counselor provides a sympathetic ear and shoulder, allowing kin to express their sadness and rage openly and free of judgment. An important strategy employed by many OPOs today is referred to as “decoupling,” where successful procurement is understood as relying on the sequential acceptance of two messages by a patient's surviving kin (DeJong et al. 1998). The first message concerns brain death criteria, and OPOs generally rely on hospital physicians—preferably neurologists—to explain this initially to patients. OPOs thus expend much time and energy running in-house educational seminars for hospital staff on the dos and don'ts of talking about brain death with patients' families. The OPO family counselor then follows up with another discussion or series of conversations about brain death, sometimes supported with visual aids but, more frequently, by employing vernacular language devoid of mystifying clinical jargon. As I will explain in greater detail later, metaphorical analogies abound. Only once kin begin to show signs of accepting brain death criteria (they start to talk about funeral arrangements, for instance) does the family counselor shift to the second message: that is, the great social value of organ and tissue donation.

Within one East Coast OPO in particular, I found that family counselors defined a well-developed area of in-house expertise. This OPO is based in a large and ethnically diverse city, and in the mid-1990s the director hired a team of counselors who represented an eclectic range of professions, religions, and ethnicities. This hiring practice was based on the premise that it would facilitate the rapid establishment of rapport with families whose backgrounds overlapped with those of individual counselors. Such an approach was nevertheless highly controversial within this OPO and beyond because of a dominant assumption in the realm of organ transfer that all patients or bodies are equal beneath the surgeon's knife (Sharp 2002b). Nevertheless, in this particular OPO, if it was known in advance that a potential donor was, say, Latina, the team's director would make every effort to assign a family counselor fluent in Spanish and, preferably, also of Latin American descent. Similarly, an Orthodox rabbi, who often agreed to be on call, would respond to requests to meet with Jewish families of a range of levels of observance; and an African American woman, who had worked previously as a Pentecostal minister within a storefront church, was regularly matched with inner-city African American and Caribbean families.

These elaborate pairings generally characterize only the nation's largest OPOs and were more typical in the 1990s than they are at present. Financial pressures (linked in large part to false hopes that donations would grow substantially each year) have forced some OPOs to scale back, rendering specialized hiring practices an unaffordable luxury today, except where linguistic barriers may prevent successful donation outcomes. Similarly, clinical coordinators and family counselors may have reverted to a single position in some OPOs. Smaller OPOs, such as those that serve primarily rural regions or midsize cities, have much smaller staffs (perhaps five to fifteen employees rather than fifty), their members shouldering all duties, including the clinical monitoring of a donor, talking to family members and providing emotional support, and sometimes even assisting with the actual procurement of the organs (a task performed elsewhere largely by transplant surgeons who arrive on site to retrieve organs for patients under their care).

Successful procurement also relies on support from a range of other, non-OPO employees. Family members may raise the topic of donation themselves, making the task of acquiring consent much easier. Many donor kin frequently report that a staff nurse (but rarely a physician) broached the topic of organ donation and, further, that it was this nurse's extraordinary level of emotional support that led them, in the end, to consent to donation. Many OPOs now train ICU staff as well as other hospital employees, among whom clergy are especially important, to approach families about donation. Chaplains, after all, regularly tend to families faced with end-of-life decisions, and they define a significant target for OPO training sessions (UNOS 2000). Ruth Yoder, a chaplain based in a midwestern hospital, explained her approach as follows, one that echoed those used by local OPO staff during the early 1990s:

With families, almost universally [donors] are people who were young, vibrant and healthy—they died in a car or motorcycle accident, from a gunshot or an aneurysm in the brain. So the family has a tremendous adjustment—the person was fine only a little while ago, unlike [with] terminal[ly ill patients where families have been coping for a while with death]…. What I show [the family] is that their breathing is exactly the rhythm of the machine. I explain that their blood isn't cold and that there is only a little color change, but that it is the machinery that is keeping them alive. The machinery is traumatic [for kin] when family members see someone like this suddenly all hooked up to these machines.…I [then] ask them, “Have you ever talked to so and so about organ donation? How would they want to be remembered?” That helps a lot…. The initial reaction is, “He/she has suffered enough.” What this means is “I've suffered enough.” Most people are very sympathetic [to donation]. Donorship helps them make sense out of the loss. With sudden death, people do want to make sense out of it. Terminal [illness] is much harder—usually family members will say, “They have suffered enough”…[and that's precisely] what they mean.

Procurement is far from an easy assignment: within one East Coast OPO where I conducted research over the course of a full year, of all potential donors identified, only 18 percent in 1993 and 28.5 percent in 1994 resulted in successful procurement. The reasons the remaining cases did not succeed included the failure of patients to qualify for brain death status; the inability of OPO staff to approach kin on time; obstructionist hospital staff; and medical complications (including advanced age, history of cancer, serious heart disease, or the body “crashing,” as staff so often put it, before procurement could occur). Finally, within each year more than 30 percent of kin refused consent when asked.¹¹

Procurement is emotionally trying work, exacerbated by hostility toward such work among some hospital staff, as reflected in the range of derogatory slang applied to OPO workers. Common labels include “ambulance chasers,” “vultures,” and the “death squad.”¹² The ability of OPO staff to remain true to their course hinges on their great dedication to the humanitarian principles that drive organ transfer. The dominant messages they convey to potential donor families include emphasizing that donation allows some good to emerge from a terrible tragedy; that loved ones, though suddenly lost, may live on in others through organ transplantation; and that multiple organ donation especially means that donors' “gifts of life” can pull a number of people back from the brink of death, allowing them to return to normal, productive lives.¹³ When I began my research on organ procurement, I was informed repeatedly that the typical burnout rate for this line of work was around eighteen months, whereas transplant coordinators who worked with patients awaiting organs often remained on the job for a decade or more (Sharp 2001). Recently, both AOPO and UNOS have begun to address the effects of what one OPO employee referred to as “sympathy burnout” among procurement field staff.

OPO staff speak specifically of the work that involves direct contact with (potential) donor families as simultaneously the most trying and rewarding of experiences. Staff put in long hours at the hospital, each assignment frequently spanning several days. Because rapport with kin is essential, OPOs are especially reluctant to switch family counselors midstream, even when they are exhausted from lack of sleep. Their primary tasks involve assisting families faced with unimagined traumas, fresh grief, and, at times, internal strife among kin on issues that may include guilt, anger at one another or even the dying patient, frustration with hospital staff, or disagreements on treatment trajectories, funeral plans, or donation. OPO work is exacerbated by the need to approach families under time-pressured circumstances—that is, a successful procurement hinges on the ability of kin to offer consent when they are still numbed by the sudden onset of grief. Donors' deaths often result from unexpected, and often heartrendingly violent, situations: a little girl has a massive aneurysm on the playground; a young boy is struck by a car on his way to school, makes his way home alone, and crawls into bed, only to fall into a coma; a sleeping teenager is shot by a friend who is playing around with his father's handgun; a fiancee has a head-on car collision and sustains a major head trauma two blocks from her lover's house; a cornered young man is shot in the head by police at the end of an hour-long car chase; a college student home for the holidays, recently rejected by a lover, shuts himself in the garage and turns on the car engine soon after his parents have left for a Christmas party; an elderly gentleman collapses in the street from a massive stroke during his lunch break and is rushed to the hospital by EMTs. These sorts of stories are all too familiar to procurement coordinators.

At times individual counselors are accepted by kin as a source of support and guidance; at others, and especially in the case of male counselors, they might even be physically assaulted by family members who want no part of a stranger speaking to them of death. As all counselors underscore, they are often deeply moved by their encounters with donor families, whom they view as an inherently unique group of people who have made horribly difficult decisions at terrible moments in their lives. At times the catharsis of these sudden and unexpected encounters generates a level of closeness that may extend for weeks, months, or longer. All counselors who have been on the job for a few years can speak of donor kin who contact them personally when grief strikes anew. When a donation has gone well, donor kin, too, speak of compassionate counselors whom they remember with great fondness.

In part to relieve field staff of the burden, as well as to provide sustained aftercare for donor kin, by the late 1990s a number of OPOs began to hire grief counselors. Today these specialists typically direct a subsection of their OPO, offering a range of aftercare programs and more intimate forms of counseling. Prior to 1998, however, aftercare was limited to annual commemorative events, generally staged by OPOs or sometimes by regional hospitals. As Chaplain Yoder explained in 1992, at that time donor families had to fit into a particular niche by joining a six-week support group for widows and widowers, or another for parents who had lost a child. Among the most impressive shifts in OPO work is the growing understanding that donor kin, by virtue of their unusual end-of-life decisions, experience grief in specialized ways (Maloney and Wolfelt 2001). (This reality defines a key focus for the following two chapters.)

A Special Kind of Death

Sorting through the literature on brain death is a complex affair, given that the manner in which brain death has been defined or described varies, especially if traced from the 1960s through the early 2000s. Early on, for instance, brain death was regularly referred to as “irreversible coma,” as phrased by the Harvard Ad Hoc Committee (HMS and Beecher 1968). Today it is generally contrasted with, rather than equated with, coma and vegetative states, although such references linger.¹⁴ The refinement of brain death's definition stems from more recent advances in neurology, a burgeoning specialty that now relies routinely on sophisticated forms of imaging technology to diagnose and treat brain traumas (Gean 1994). I will begin, then, with a technical description offered by Eelco Wijdicks, a neurointensivist and recognized specialist on brain death criteria. As he explains, “’Brain death’ is the vernacular expression for irreversible loss of brain function. Brain death is declared when brainstem reflexes, motor responses, and respiratory drive are absent in a normothermic, nondrugged comatose patient with a known irreversible massive brain lesion and no contributing metabolic derangements” (2002: 1). Embedded within Wijdick's statement is the understanding that brain death is detected through the systematic application of diagnostic procedures (Wijdicks 2001). (I will return to this issue later.) Among the more confusing aspects of brain death for the clinically uninitiated is precisely how much or what part of the brain is in fact irreversibly damaged. During fifteen years of field research I have received a range of answers to the question, What is brain death? when speaking with OPO educational and clinical staff, as well as internists, transplant surgeons, and neurologists. OPO staff typically underscore what it is not: brain death is neither a coma nor a vegetative state. OPO staff are especially averse to these terms (even when either condition is described as “irreversible”) because they evoke within the lay public images of injury followed by spontaneous recovery. Other interviewees (especially those who are clinically trained) sometimes describe brain death as “full” or “total” brain failure.¹⁵ Neurologists whom I interviewed in 2004 preferred to speak of brain stem failure (cf. Hill 1999; Matta 2000; P. Young and Matta 2000). As Dr. Needler, who regularly diagnoses brain death in patients, explained, “During my clinical training I learned what any physician learns—we learn about the hierarchical organization of the brain—if the brain stem has ceased to function, then the upper brain's capabilities will fail, too. This is why we speak of [the] brain stem in reference to brain death.” Another neurologist, Dr. Valentine, underscored that the damage sustained from this form of head trauma is irreversible and, further, that the brain may begin to “liquefy” or “grow necrotic” even as procurement staff are in the process of assessing a donor's status. All that is left is perhaps some residual spinal activity, nothing more.

Diagnosis by a physician is a relatively straightforward procedure that requires few specialized tools, but from a lay perspective brain death is a truly confounding medical category. Oddly, too, whereas several professional organizations—such as the American Academy of Neurology and the American Academy of Pediatrics—have published diagnostic guidelines, brain death criteria have yet to be standardized either within this country or internationally (AAP 1987; Gelb and Robertson 1990; J. Lynch and Eldadah 1992; University of North Dakota 1998; Wijdicks 1995a). Within the United States specifically, mandated diagnostic criteria vary from one state to another, among OPOs, and even among hospitals located within the same city. Dr. Lazarre, a neurointensivist who described himself as one who has “diagnosed literally hundreds of brain dead patients,” stressed that “brain death is a clinical diagnosis. You don't need special tools or tests to do it. It only takes me about four minutes—it's very quick. It is not difficult for me [to recognize]—diagnosis is not [a] difficult [task].”

Regardless of protocols, in the end, the purpose of diagnostic criteria is to confirm the absence of brain activity. The systematic assessment is generally conducted by a neurologist, although any trained physician is capable of the task. (Sometimes, though rarely, a nurse may assume this duty.) In-house protocols almost always require that the assessment be administered twice and by two separate physicians, although the period of time between the two varies significantly from one institution to another. Dr. Lazarre, who proudly stated that he had “streamlined” his unit's protocol, put it thus:

DR. LAZARRE:	I…got rid of the observation period.
L. S.:	But don't two separate doctors still evaluate the patient?
DR. LAZARRE:	You still need two different doctors. Some places they [conduct separate observations] six, twelve, twenty-four hours apart. I got rid of this. You don't need it. I can do the [tests] two minutes apart with two people [and that's all it takes]. If you really understand brain death—[after all] you can't become un-brain-dead. [He then describes the function of the hypothalamus.] You will [then] have cardiac death. We [might be able to] keep you alive for two to three days. There are those who write [about] people who can be brain dead for two to three months—but the body [falls apart eventually]. I find it hard to believe [that maintaining someone this long] is realistic or happens [very often at all].

Drawing from the literature and my field interviews, I offer the following review of brain death assessment in adult patients.¹⁶ First, the patients must be deeply comatose and artificially ventilated, their CAT scan and spinal fluid tests generating abnormal results. Before proceeding with diagnostic tests for brain death, the physician must also know the origin of injury, so that he or she can exclude other causes that can mimic brain death. These include hypothermia, endocrine crisis, severe acid-base abnormalities, intoxication, the presence of barbiturates and other sedatives (self-or hospital-administered), as well as neuromuscular blocking agents.

Once these are ruled out as probable causes, the physician tests systemically for brain stem activity in response to excessive noxious stimuli. The physician exerts pressure on the nail beds of the hands and feet and on the sternum (located in the upper central region of the chest). Throughout such tests the physician watches for such reflexes as eye opening, facial grimaces, head movements, and reflex movements of the limbs. The purpose of these tests is to make certain that the patient's condition results not merely from a damaged cerebral cortex but specifically from brain stem failure. For instance, the pupils can be any shape, but they should exhibit no response to bright light. There should be no evidence of normal eye closure as the corneas are stroked, or eye movements when the head is moved briskly or when the interior of each ear is flushed with cold water. Also, brain dead patients do not gag or cough in response to a throat swab or tongue blade, or when the physician wiggles the ventilator tube within the trachea. A range of more sophisticated (and technologically mediated) diagnostics, referred to as “confirmatory tests,” might then be applied. (Although required in Europe, they do not define a mandatory component of U.S. protocols.) They include cerebral angiography, electroencephalogram, transcranial doppler, and other brain imaging techniques.

In the United States the single required confirmatory technique is the apnea test, whose purpose is to document that the patient is incapable of breathing spontaneously when disconnected from the ventilator. (This ability is marked by such responses as coughing or gasping.) As recently as the mid-1990s, the apnea test was considered highly controversial within those OPOs where I conducted research. A widespread fear was that cessation of ventilation could induce cardiac arrest or other forms of trauma, circumstances that threatened the viability of organs for later transplantation (Wi-jdicks 1995b). The apnea test has since evolved into a normative practice, in part because of a range of more recent techniques designed to prepare and stabilize the patient before and during the procedure. Common precautions include using a warming blanket to increase the core temperature of the body and administering vasopressors to counteract low blood pressure, as well as other medications to control fluid levels. Prior to the test patients are also typically oxygenated; once the patient is disconnected from the ventilator, the physician must document blood gas levels (paying particular attention to carbon dioxide [CO₂] readings) for several minutes. Depending on the hospital, the apnea test may last anywhere from three to eight minutes. As Dr. Lazarre explained, “This is the biggest stimulus to the brain [to start breathing]. You look, watching with your own eyes for no breathing movements. In the end you…document that there's evidence that the blood is [saturated] with CO₂ and not oxygen…. you draw arterial blood and then document the CO₂ [level this way].” In some instances the apnea test is repeated, although staff whom I interviewed (drawn from OPOs of a range of sizes) all reported that this was strictly optional in locations where they worked.

Today the administration of diagnostic tests defines a ritualized form of witnessing for patients' kin in some hospitals. As a neurologist, Dr. Needler prefers to have family members present when she tests for brain death because this helps her to explain more clearly what is wrong with the patient. A troublesome element here is that brain dead patients sometimes manifest what clinicians refer to as a “Lazarus sign”: that is, their bodies may move as a result of residual spinal activity. Wijdicks stresses that such movements frequently occur following an apnea test, and he thus offers these cautionary words: “It should tell you that the family members should never be present during this procedure [because] it might be very difficult to discuss organ donation after this occurs” (University of North Dakota 1998). Nevertheless, some OPOs have taken the radical step of encouraging the kin of prospective donors to be present during the apnea test. Dora Tucker-man, who directs her OPO's donor family aftercare program, underscored the power of this form of clinical witnessing:

This is a very [important part of understanding] brain death because they [that is, ventilated donors] don't look dead. I ask our people [in the field] to ask if [donor kin] want to see the apnea test. They have a right to this! Otherwise, you're asking them to take on faith that this breathing thing is dead. Docs—I wish, please tell them to say dead.…I know one donor mom who was told she couldn't be there for the apnea test—she snuck in [anyway] and she was so glad she did. Then she believed [her son] was dead.

Variability and Trust

As reflected in Dr. Lazarre's statement, brain death criteria are more streamlined in emergency rooms, ICUs, and trauma centers when their directors enthusiastically support organ donation. The presence of large transplant centers in such cities as Pittsburgh, Cleveland, San Francisco, Dallas, New York City, and Rochester, Minnesota, for instance, as well as long-standing and large-scale OPO operations, also inevitably shapes brain death protocols. Individual OPOs frequently assist smaller hospitals in forging in-house policies for brain death declaration; at the very least they initiate the declaration process by observing individual patients and assessing their medical status. Based on their readings, OPO staff may then request that proper neurological tests be performed. The varying level of engagement and willingness on the part of hospital staff to work with OPOs ultimately shapes the time lag between the two physicians' assessments, as well as the urgency with which additional confirmatory tests might be applied.

The manner in which OPO counselors approach families is driven in part by a widespread paternalistic assumption that kin do not want, nor do they need, to know the specific details of brain failure (or, for that matter, organ procurement). Such knowledge is understood as too difficult to comprehend, too traumatic, or too cruel to describe to kin in the throes of grief. Also, too much knowledge might threaten the opportunity to acquire consent. As noted earlier, OPO coordinators generally prefer that a neurologist speak first to the family, but he or she should then withdraw so that a counselor can work directly with kin. Dr. Lazarre, who is highly supportive of organ donation, put it thus: “[They say], ‘your job is to [try to] save the patient and diagnose brain death and ours is [to talk about] donation.’ But they have this really patronizing attitude—they're afraid we're going to fuck up [the process]. But it's like the eight-hundred-pound gorilla—look, the family knows—they're already thinking about donation—and it helps them to see some good come out of the tragedy [of the death] and so, I say, I just want to let them know that I support this, that I support organ donation.”