Strange Harvest. Lesley A. Sharp
Читать онлайн книгу.
where organ recipients from around the country compete in various athletic events, promoting a public image of transplant's medical success. Here I interviewed another eight transplant patients from around the country. I also attended (and, over time, was invited to make presentations at) three national transplant conferences.24 At these venues I also learned more of the regional differences in medical practices and transplant ideology, and I was able to expand my contacts beyond the Midwest. In subsequent years I conducted another dozen interviews with recipients and professionals from a wide range of national locations. I also ventured to Richmond, Virginia, to visit UNOS, the organization that oversees the distribution of organs in this country. Here I interviewed two staff members and witnessed firsthand how they reported and managed donor cases and how they allocated organs locally, regionally, and nationally. Finally, I traveled to Washington, D.C., on three occasions specifically to consult with a half dozen health professionals and a small cohort of transplant recipients who are advocates for minority transplant needs.
The second phase (1994-96) began when I moved to New York City to assume my current teaching post at Barnard College. As a result of the sporadic attention I gave to donation in the Midwest, I had become sensitized to the professional split between those who worked with transplant recipients versus organ donor kin. This split became especially apparent to me when I was invited to give a presentation at a national meeting: as I soon learned, the membership was so divided that transplant and procurement professionals typically sat on opposite sides of the aisle when attending an event in the main conference hall. Especially striking was the fact that procurement specialists were regarded as a necessary evil of sorts among members from the hospital-based transplant community; moreover, it was not unusual for them to self-identify as “vultures” and “ambulance chasers.” Given the obvious privileging of transplant medicine, I was troubled by the absence of descriptions of procurement activities in the literature, the compelling work of Linda Hogle (1995a, 1995b) soon emerging as a remarkable exception.
My research during this period (and beyond) focused on the lives of professionals employed in three East Coast OPOs. Thanks to the grace and trust of the managing staff of one office, I was allowed to track the comings and goings of staff, shadowing them as they followed donor cases; for nearly a year (February-December 1995), I attended monthly staff meetings at which all donor cases were systematically discussed. From early 1995 until early 1996, I interviewed thirteen employees; half of these involved second and sometimes third or fourth follow-up interviews. Between 1999 and 2004, I interviewed five additional staff and conducted follow-up interviews with several from the original cohort. To test for regional differences in attitudes, training, and work activities, I paid on-site visits to an additional seven OPOs, interviewing staff based in the East, South, West, Southwest, Central Mountain region, and Midwest. Complementary data were generated through additional experiences at conferences and other transplant-related events where I encountered staff from an additional five OPOs representative of these same national regions. In short, over the course of fifteen years, I have interviewed and worked among staff from fourteen separate OPOs. Of key concern to me have been professionally guided understandings of brain death and how OPO employees think and talk about donor bodies, donor kin, and the social ramifications of organ procurement.
Early in my research I became aware of the ubiquitousness of donor memorial events, and so during this second phase of my work I began attending these on a regular basis. (Three separate organizations in New York City host their own large-scale annual event.) These memorials are staged primarily for either organ recipients or donor kin, offering attendees a means for honoring donors (and their kin). Although a primary goal is to offer a safe and open context in which to grieve, organizers are nevertheless fearful of excessive emotional outbursts among participants. As a result, these events are tightly orchestrated by health professionals and administrative staff. Typically, too, they are rife with symbolic imagery that emphasizes transplantation's life-giving mission: often they involve the planting of trees in donor gardens located on hospital grounds or in public parks. Regular memorial services are also held in local churches or cathedrals in some parts of the country, as are elaborate banquets with a host of high-profile speakers. Given the Christian overtones of many of these events (and related imagery in the transplant literature), I became intrigued by what might be left unsaid about how various faiths understood the sanctity of the body and its disruption by organ procurement. To date I have attended fourteen of these memorial events (three in Indianapolis, eight in New York City, one in Washington, D.C., and two at separate Transplant Olympic events), as well as two Transplant Walks staged in New York City, all organized to raise public awareness about organ donation. Throughout much of my work during this second phase, I was greatly assisted by Sarah Muir, who conducted interviews with religious practitioners in New York City as well as with morticians who prepare the dead from an array of faiths for burial. In addition to my own participation in the arenas described here, Sarah regularly attended two sets of organ recipient support groups whose members were of radically different ethnic, religious, and class backgrounds.
Each time I attended donor memorial events in the early 1990s, I was struck by the absence of donor kin; or, if they attended, I perceived deliberate attempts to silence them or script their presentations. Early in the course of my research I voiced this concern to a woman who had organized such an event in Indianapolis. Rather than rebuking me, she explained in a hushed voice that she herself had been dissuaded by hospital staff from including donor kin as speakers. I wanted to know why, and, thus, I eventually turned my attention to this question during the third phase of my research (19962001). This period focused on the long-term effects that organ donation has on the lives of surviving donor kin, a social category about which, again, very little has been written. Several key concerns became important here. How might donor kin's perspectives on death differ from those expressed by recipients and procurement specialists? How did surviving kin respond to professionally orchestrated memorials? How did they mourn their dead in private arenas? What were their reactions to the insistence that they remain anonymous to organ recipients? Under what circumstances might they defy taboos on communication with recipients? At this point I became aware of subversive memorial sites where donor kin could speak publicly of donors and their deaths devoid of professional control. Among the most visible was the production of a national donor quilt (one modeled after the AIDS quilt). My student assistant Marcy Brink also thankfully drew my attention to virtual cemeteries located on the World Wide Web; her initial analysis of these Web entries helped to stimulate my later thoughts on their significance.
At this time I conducted on-site observations and interviews with the founder and three staff members at a recently formed donor advocacy group; these individuals also allowed me to consult their files and make use of material generated from a nationwide survey that targeted donor kin. This work was further enhanced by the adroit skills of graduate student Katie Kilroy-Marac, who was allowed to join this group as an intern as part of my ongoing research. Among the most striking accomplishments of this group was their insistence that the Transplant Olympics become a more inclusive event that welcomed donor kin. In summer 1998, Katie and I attended yet another
Transplant Olympics, this time in Columbus, Ohio, where she spent much of her time working alongside staff who coordinated donor kin activities (and solving myriad logistical and individual participants' problems). In addition to attending six events and workshops designed specifically for donor kin, I conducted a series of open-ended interviews with fifteen individual donor kin, two family members of recipients, and two paired (that is, simultaneous) interviews, where a donor family member and a recipient spoke with me together about the history of their relationship. At the invitation of the donor advocacy group, Katie and I also ran a focus group of fourteen, its membership restricted to donor kin who had met their respective organ recipients. I conducted additional interviews with four donor kin at various conferences or in the privacy of their own homes; these data are complemented by approximately ten additional personal stories I have heard over the years as recounted by speakers at various transplant events.
Finally, the fourth phase of my research (2002-present) focuses on the relevance of organ scarcity anxiety in shaping a range of experimental realms of organ transplant medicine. A major concern involves the search for alternative sources of transplantable parts, which currently include mechanical devices, animal parts, and organs grown from cell cultures (sometimes referred to as “organogenesis”). Within this book I will