Strange Harvest. Lesley A. Sharp
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as the nature of their social relationships (see especially Fox and Swazey 1992). The United States as a research context shapes these dominant concerns, for as one moves into the global arena, the focus shifts rapidly to investigations of both legal and clandestine forms of trafficking in human body parts, with organs taken from donors who, unlike recipients, lack access to quality health care.4 My decision to limit my focus to the United States is in part a matter of scale. The United States has long stood as a world leader for organ transplants, both in terms of the innovative use of biotechnologies and because of the sheer volume of surgeries performed each year. Today many American cities can boast of at least one hospital with a transplant unit, and as other researchers have found, it can be difficult to avoid comparison with the United States when writing about transplants elsewhere (Hogle 1999; Lock 2002). I therefore leave living donation, tissue (that is, non-organ) procurement, and global trends for others to explore.
As the chapters in this book detail, highly complex social relationships arise in response to cadaveric donation. These relationships can be difficult to uncover because of the strict taboos imposed by involved health professionals, many of whom, for example, insist that donor bodies be viewed as mere corpses that generate reusable parts; that recipients should neither identify with or idealize their donors nor humanize their organs; and that surviving donor kin and recipients should not communicate with one another but instead move on with their separate lives. Nevertheless, many health professionals wrestle privately with highly medicalized constructions of donors' deaths. Further, recipients do in fact imagine a donor's identity in all sorts of ways and frequently integrate this unknown Other as an intrinsic part of their subjective sense of self. Finally, organ recipients and their donors' surviving kin may long to encounter one another, and they may go to great lengths to do so, even when blocked by transplant professionals who hold records of their respective identities, addresses, and histories.5 Among the great ironies of organ transfer in the United States is that it generates a host of new social relationships that at first may seem altogether strange to the uninitiated, yet which are in fact common and, I argue, culturally generated and thus naturalized responses to the peculiar qualities of cadaveric organ donation.
With this in mind, I am most intrigued by the manner in which medicalized definitions of death affect how involved parties think about organ donors, transplanted organs, and donors' deaths. Key to understanding cadaveric organ donation is that it relies overwhelmingly on donors who have sustained sudden, unexpected head traumas and who are declared brain dead within hospital settings (most frequently by staff neurologists in hospital ICUs). Because the shadow of death pervades this form of organ transfer, I argue that very particular and peculiar responses emerge that stand in contrast to those associated with living donation. Donor death is highly problematic: for transplants to be socially acceptable, all involved parties must embrace legal definitions of brain death as legitimate in medical, physiological, and spiritual terms. Nevertheless, careful probing reveals that there is tremendous disjunction between expressed public (or official) and private understandings of brain death criteria. For these reasons, throughout this book I will refer to cadaveric (that is, of or like a cadaver) forms of donation while avoiding the label cadaver when speaking specifically of the organ donor (that is, the donor-patient). Also, the logistics of donor care inevitably force involved parties to struggle with conflicting messages about death and suffering. This remains true regardless of whether one is a transplant specialist who works with patients on a transplant ward; a procurement professional who talks to kin about donation as a loved one lies dying in an ICU, and who may later assist, too, in the surgical procurement of organs; a patient who becomes an organ recipient through transplant surgery; or a donor's surviving kin who have granted permission so that a donor-patient's organs can be taken and transplanted in recipients elsewhere. The unusual form of death so intrinsic to organ transfer's success generates deeply personal responses, which persist long after donation, procurement, and transplantation occur. These responses may stand in stark contrast to what is currently represented in the literature as transplant dogma.
As an in-depth exploration of the ethos of organ transfer, this book is structured around conundrums or nagging questions that I will refer to as transplant paradoxes. These paradoxes spring from a set of ideological premises that guide research participants' everyday actions and speech, as well as the tenor and focus of both specialized professional publications and promotional literature on organ transfer written for general audiences. As I shall illustrate throughout, a wealth of knowledge is embedded in the ways professional and lay parties behave and talk about organ transfer in a variety of settings, including transplant wards; professionally orchestrated events such as conferences, annual commemorative celebrations, and patient support group meetings; and interviewees' private homes. I am especially sensitive to dominant narrative genres—that is, the particular ways in which participants learn how to speak of or write about their experiences with organ transfer. Most intriguing is the fact that responses offered in public venues may differ radically from the private thoughts individuals share only with trusted friends, close colleagues, and, at times, the anthropologist. Applied carefully, the methodological approaches that define ethnographic research reveal insider understandings of transplant decorum, exposing those moments when involved parties defy scripted forms of behavior, or when they question dominant ways of thinking about organ transfer. Surprisingly, these moments of disjunction are hardly rare. My ultimate goal is to uncover these paradoxical moments and then decode their significance as a means for understanding organ transfer as a dominant, albeit troubled, sociomedical process in America.
THE IDEOLOGICAL UNDERPINNINGS OF ORGAN TRANSFER
The cadaveric organ donor offers an especially rich site for exploring the paradoxical nature of organ transfer in the United States, where discussions of this unusual category of patient rapidly shift to a questioning mode. First, when considering cadaveric donors, do all parties think of and respond to them as a social category? For instance, how do donor kin, on the one hand, and hospital staff, on the other, talk about brain dead donors or behave when in their presence? What sorts of ideas about donors do transplant recipients and their surgeons, nurses, and social workers share, and where might their ideas diverge? Second, is it possible to speak of a collective understanding of the cadaveric donor body itself, or can conflicting ideas coexist? Can the donor be viewed simultaneously as a deceased loved one, a source of exchangeable parts, and the repository of an unusual kind of social gift? Third, does the presence of the organ donor clarify or confound understandings of death? And when precisely does a donor's death occur? Do all parties concur? Is it at the moment when a neurologist declares a patient brain dead, or during surgery when a donor's organs are removed? Is death lodged in the brain, the body, a soul, or a combination of these or other possible sites? Fourth, do brain death and organ donation confirm, confound, or enhance cultural understandings of personhood and social worth? Where does the donor-as-person dwell before, during, and after the surgical removal of transplantable organs? What issues are at stake when donors' identities remain anonymous? Finally, does it make sense to ask who owns the donor body and its parts? Can anyone claim rights to the donor's transplanted organs? If so, following transplantation, do organs belong exclusively to their recipients? If others lay claim, at what point should they relinquish their hold?
These overlapping philosophical, ethical, and cultural dilemmas shape this investigation as a whole. At one level, such questions define the parameters for debates considered regularly by medical ethicists. My purpose, however, is neither to offer definitive answers nor even to negotiate conflicts so that a compromise might be reached that would satisfy both the emotional and the practical demands of involved parties. Rather, from an anthropological standpoint, I view such debates as generating valuable data that ultimately expose troubled yet culturally driven concerns about organ transfer in this country. Such concerns are also linked to larger problems that plague medical practice more generally, especially regarding the medical versus social worth of patients; the social significance of the hospital death; the importance of altruism and kindness in medical contexts; and perplexing questions about death and proper forms of mourning. Thus, my work is most heavily invested in exploring the subject and tenor of these debates to broaden medical policy discussions and to stimulate frank and open public consideration of the social value of organ transfer.
As I will explain here and illustrate in subsequent chapters, transplantation rests on a paradoxical set