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,