Organ Transplants, Sociocultural Aspects of
Organ Transplants, Sociocultural Aspects of
ORGAN TRANSPLANTS, SOCIOCULTURAL ASPECTS OF•••
Transplantation has been defined by the American medical profession and by U.S. society at large as a "gift of life" since the first human organ grafts were performed in the mid-1950s. This conception has its roots in the Judeo-Christian tradition of American society, which defines the life of an individual as a gift that comes directly or indirectly from God and that creates an obligation to reciprocate (Parsons, Fox, and Lidz). The notion of organ transplantation as a gift is not institutionalized, or even invoked, in societies with other religious traditions (such as Japan with its Buddhist, Shinto, and Confucian background; or Pakistan, with its Islamic worldview). Initially in the United States, the idea of a gift was used metaphorically, with little awareness or analysis of its implications. Only gradually, through clinical experience and interpretive input from psychiatrists, social workers, and social scientists, did the psychological, social, and cultural meanings and repercussions of the gift-exchange aspects of transplantation become more apparent and better understood (Fox and Swazey, 1978).
Despite all the biomedical and social changes that have ensued within and around the field of organ replacement, the "gift of life" aspects of seeking, giving, and receiving a human organ have remained central to the dynamics and meaning of transplantation in U.S. society. The increased frequency of organ transplants, and their greater routinization in certain regards, have not eliminated the gift elements from these surgical and medical acts or reduced their effects on donors, recipients, and their families (Fox and Swazey, 1992).
Marcel Mauss's Gift-Exchange Paradigm
"The theme of the gift, of freedom and obligation in the gift, of generosity and self-interest in giving reappear in our society like the resurrection of a dominant motif long forgotten," wrote the renowned French sociologist Marcel Mauss in his classic 1925 essay The Gift (p. 66). To a remarkable degree, organ transplantation has been shaped by the triple set of "symmetrical and reciprocal" obligations that, according to Mauss, govern all gift exchange, no matter how spontaneous and expressive it may appear to be. These are the entwined obligations to offer and give, to receive and accept, and to seek and find an appropriate way to repay. Failure to live up to any of these obligations, Mauss pointed out, produces major social strains that affect the giver, the receiver, and those associated with them.
Mauss also emphasized that gifts have "emotional" and symbolic as well as "material" value and meaning. In this sense, he said, the gift and the obligations attached to it are "not inert." Rather, "the spirit of the thing given" and received is "alive and often personified." It "pertains to a person," and because it does, it creates a "sort of spiritual bond" between donor and recipient (pp. 10–11). Anthropomorphic and magical connotations of the gift have proved to be as characteristic of the modern medical, scientific, and technological milieus in which the giving and receiving of organs through transplantation take place, as of the settings in "primitive" and "archaic" societies that were the contexts of Mauss's study.
Obligations to Give Organs
The gift-exchange paradigm illuminates many of the distinctive psychological and social phenomena that donors, recipients, their families, and the transplant team encounter. To begin with, even though the U.S. organ donation system has been organized around the cardinal societal principles of voluntarism and freedom of choice, the situations in which transplants are performed subject prospective donors and their families to strong inner and outer pressures to make such a gift. This is most apparent in the case of live organ transplants, which usually involve the donation of a kidney to a parent, sibling, or child who is gravely ill with end-stage disease. Most transplant teams scrupulously try to avoid urging close biological kin to offer themselves as donors. Nevertheless, they do inform patients and their families that a live kidney transplant from a relative who is a "good tissue match" is likely to have a better prognosis than a cadaver transplant from a nonrelated donor. In addition to the biomedical reasons that favor a live kidney donation, its symbolic meaning virtually obliges every family member at least to consider making such a gift. The integrity, intimacy, and generosity of the family and each of its members are involved in their individual and collective willingness to give of themselves to a terminally ill relative in this supreme, life-sustaining way (Simmons, Klein, and Simmons).
It would be easy to assume that because cadaver organs come from persons who are unrelated and unknown to recipients, such donations are relatively free from inner and outer gift-giving pressures. Nevertheless, under the circumstances in which the option of donating cadaver organs arises, families may feel emotionally and spiritually constrained to make such a gift of life when this prospect is presented to them by an organ procurement team. Most cadaver organs are obtained from young, healthy persons who have been fatally injured in a vehicular accident or a homicide or who have taken their own lives. These sudden and unexpected deaths are especially tragic and fraught with problems of meaning. In the face of this sort of death, the grief-stricken family may be motivated to donate their young relative's organs by their intense need to make redeeming sense out of what they would otherwise experience as morally and existentially absurd.
Obligations to Receive Organs
The candidate-recipient who is offered a live or cadaver organ is subject to strong, complementary pressures to receive it. Whatever the potential recipient's reservations may be about a transplant, great reluctance or outright refusal to accept the lifesaving gift that is offered symbolically implies a rejection of the donor and of the donor's relationship to the recipient.
There are several recurrent sets of reasons why recipients may be reluctant to accept the kind of gift of life that a donated organ represents. First, the recipient may not want a living, related donor exposed to the degree of discomfort, danger, or sacrifice that a transplant entails. Second, the recipient may feel that receiving an organ from this individual would make the relationship between them too emotionally complicated and difficult. Third, whether the proffered organ comes from a live relative or a deceased stranger, the recipient may be heavily burdened by the realization that it is such an extraordinary gift that he or she will never be able to repay it. Fourth, the recipient may have great concern or apprehension about absorbing a donated part of another known or unknown individual into his or her body, person, and life.
Receiving a donor's organ summons up buried, often animistic feelings that people have about their vital organs and the integrity of their body, along with the sort of anthropomorphic reactions to such a gift that Mauss identified. Many recipients of cadaveric organ transplants grapple with the haunting sense that psychic and social as well as physical qualities of the unknown donor have been transferred into their body, personhood, and life. Writing about his experiences as a liver transplant recipient, Richard McCann vividly expressed such feelings—depicting the donor organ as a "bearer of its own cellular memories" and describing the long nights when he thought of the donor, always "with great tenderness," sometimes perceiving the donor as a male and sometimes as a female. The strong interest that many recipients of cadaver organs and their kin have in knowing what kind of person the donor was and what the donor's family is like is related to this phenomenon. So, too, is the eagerness of donor families to learn something about the persons to whom living parts of their deceased relatives have been given, and about their families.
In the early years of human organ transplants, during the 1950s to mid-1960s, medical teams were inclined to reveal the identities of the donors of cadaver organs, their recipients, and their families, and to provide details of their backgrounds and lives. Physicians believed that these intimate participants in the acts of transplantation giving and receiving were entitled to such knowledge. They also thought it would enhance the meaning of the transplant experience for the recipient and recipient's family and afford consolation and a sense of completeness to the donor's family.
With the passage of time and increased clinical experience, however, transplant teams became more wary about the information they conveyed. They were discomfited by the way in which recipients, their kin, and donor families personified cadaver organs, and by how many of them not only arranged to meet but also tried to become involved in each other's lives, as if they were indebted and related to one another. These interactions were major factors that led most transplant units to establish the normative practices of guarding the anonymity of cadaveric donors and of exercising great restraint in divulging any information about the donor to the recipient or about the recipient to the donor's family. Although transplanters developed this policy out of their desire to reduce some of the stress that the symbolically charged gift of an organ entails for all who are involved in it, they express some ambivalence about its merits and uncertainty about its consequences. The policy of anonymity has been challenged as paternalistic by donor families and recipients, in the "National Communication Guidelines" developed by the National Donor Family (NNF) council in collaboration with a number of transplant organizations including the United Network for Organ Sharing (UNOS) and the U.S. Department of Health and Human Service's Division of Organ Transplants (Corr et al., p. 625).
Obligations to Repay the "Gift of Life" and the "Tyranny of the Gift"
At the center of organ transplantation is a gift of surpassing significance—in the words of philosopher Hans Jonas, a "supererogatory gift … beyond duty and claim" (p. 16). Paradoxically, it is an offering that so perfectly epitomizes an ultimate Judeo-Christian value—the injunction to give of one's self to others in ways that include strangers as well as kin—that it transcends what is ordinarily asked or expected of people. The sublime meaning of what is exchanged, along with the literal and figurative sense in which a living part of the giver comes to reside and function inside the recipient, usually creates a very strong bond between the donor, the recipient, and their families. The sense of oneness and ennoblement that a donor or donor's family and a recipient often experience as a result of the life-giving and life-receiving acts in which they have participated can greatly enrich them, emotionally and spiritually.
But as Mauss could have foretold, what recipients believe they owe to donors, and the sense of obligation they feel about repaying "their" donor for what has been given, weigh heavily upon them. This psychological and moral burden is especially onerous because the gift the recipient has received from the donor is so extraordinary that it is inherently nonreciprocal. It has no physical or symbolic equivalent. As a consequence, the giver, the receiver, and their families may find themselves locked in a creditor– debtor vise. Because of their feelings of great indebtedness, recipients of live organs may have difficulty in maintaining psychic distance and independence from donors and in asserting their own separate identity and being. In some instances, their struggle to do so may cause a serious rupture in the relationship between recipient and donor. Renée C. Fox and Judith P. Swazey have called these aspects of the gift-exchange dimensions of transplantation "the tyranny of the gift" (1978, chap. 1).
Alterations in the Theme of the Gift: Efforts to Procure More Organs
The 1980s and 1990s brought a number of significant changes in the ways the U.S. medical community and public thought about the gift of a transplantable organ, and in how they acted in relation to their conception of it. The primary precipitants of these changes were the growing preoccupation with the shortage of organs and the increasing efforts that were made to augment the supply of both living and cadaver donors.
The 1980s were marked by a substantial expansion in the number and types of transplants and retransplants, in the number of hospitals doing these procedures, and in the number of patients on waiting lists. The discovery and pervasive use of cyclosporine, a more effective immunosuppressive drug for managing the rejection reaction triggered by transplanted organs, was a key biomedical factor that contributed to this transplant "boom." To the distress of organ procurement agencies and transplanters, these increases occurred in the face of a plateauing of cadaveric donors and a slight decline in living donors. The "alarming number of patients who die waiting" for a transplant (Peters, p. 1302) led members of the transplant community and their advocates to define the organ shortage as a "public health crisis" (Randall, p. 1223). In the context of various policy strategies that were deployed to combat this growing "crisis," the concept and theme of transplantation as a gift of life underwent a number of alterations.
GREATER USE OF LIVING DONORS. Efforts to enlarge the supply of organs included a greater interest in the use of living donors. This resulted in an expansion of the kinds of live-donor transplants that surgeons were willing to perform, and significant redefinitions by the transplant community of how, for purposes of giving and receiving an organ, donors and recipients can be nonbiologically "related" to each other. Increasingly active and large-scale campaigns to recruit future donors were also mounted, urging people to "make a miracle" by giving a gift of life through the provisions of the Uniform Anatomical Gift Act. (Promulgated in 1968 and adopted in some form by every state by 1973, the act enables individuals to legally signify their willingness to have their bodily parts used for transplantation after their death; if the deceased's wishes are unknown, the act grants the next of kin the right to make this decision.)
Beginning in the 1980s, the fact that the supply of cadaveric kidneys was not large enough to meet the growing demand for them, along with advances in immunosuppression, emboldened a number of medical centers to undertake kidney transplants from unrelated live donors. In effect, something akin to a collective taboo against performing this type of graft had previously existed among transplant physicians. A new term appeared in the medical literature: "emotionally related donors," meaning persons whose relationship to recipients, though not biological, was analogously close (including spouses, in-laws, adopted children, and kinlike friends). In 1985 the Council of the Transplantation Society (CTS) issued a set of "guidelines for the donation of kidneys by unrelated living donors" that legitimated their use in exceptional circumstances "when a satisfactory cadaver or living related donor cannot be found." These normative recommendations expressed continuing concern about the motives of such donors, about the recognition and protection to which they were entitled for such "a gift of extraordinary magnitude," and about the ever-present danger "in the current climate of commercialization" that, particularly in the case of "living stranger donors," the covert buying and selling of organs might be involved (CTS, p. 716). Because living donations have become a "burgeoning source of organs," some concern also has been expressed about the risk of "trading [the donor's] health or even life for that of [the recipient]" (Kahn, p. 4).
In the atmosphere produced by the acceleration in the number and range of transplants performed, the mounting sense of crisis over the organ shortage, and the increased support given to live-donor kidney transplants, liver and lung transplantation from living donors was tried for the first time in the United States. The initial liver recipients, in 1989, were two infants with biliary atresia, a congenital, usually fatal condition, each of whom received a liver lobe from a parent. In 1991 a nine-year-old girl received two successive live-donor lung-lobe transplants: first from her father and then, when this did not provide enough lung capacity, another transplant from her mother. During the second procedure, the child died of heart failure. Partly because the liver has the mysteriously unique ability to regenerate itself, live liver-lobe transplants have since included donations from friends and, in one instance, a "stranger"; but like lung-lobe transplants, they are still relatively uncommon and done only at a few highly sophisticated transplant centers.
Another form of live donation, employed since 1984, has generated even greater uncertainty and debate about "the permissible limits of one of our most powerful instincts, the one that leads us to fight for the life of our children" (Quindlen). These cases involve conceiving and giving birth to a baby in order to provide a bone marrow donor for one's dying child when no donor with a compatible tissue type can be located. In 1990 the case that received the most attention, because of the decision to go public, was that of the Ayala family, whose nineteen-year-old daughter, Anissa, was slowly dying of chronic myelogenous leukemia. Her parents announced that they had conceived a child on the one-in-four chance that the baby's tissue type would be compatible with Anissa's. There was a tissue match, and at age fourteen months the baby had her bone marrow withdrawn and infused into her sister. The Ayalas' story was viewed by many as an act of love as well as of science—all the more so because the parents made it clear that they never would have considered aborting the fetus if its tissue type did not match Anissa's. Pervading all the discussion surrounding this case, however, was disquietude about how morally acceptable it was to bring a baby into the world to provide life-sustaining treatment for another child; about the baby's inability to consent to this role; about the psychological impact that the condition of the donor child's birth could have on her sense of identity and of her reason for being; and about how blameworthy she might feel, or be made to feel, if in the end her transplanted tissue failed to help her sister (Kearney and Caplan).
By 2002 all these issues had been extended to an analogous situation, one in which hematopoietic stem cells from umbilical cord blood or bone marrow might cure or alleviate a disease affecting the blood or immune system of a child. Conceiving a baby to serve as a stem cell donor was a possibility for the parents of such a child, and using in vitro fertilization followed by selective abortion, or preimplantation genetic diagnosis and selective embryo transfer had become viable biomedical options (Robertson, Kahn, and Wagner).
NON-HEART-BEATING DONORS. Another effort to increase the supply of organs has been the use of what are termed planned or controlled non-heart-beating donors, an effort that was initiated by a 1991 protocol at the University of Pittsburgh. In such cases, a family agrees to have life-sustaining treatment withdrawn from a close relative who is terminally ill but not brain dead, so that the person's organs can be retrieved for transplants. In effect, this constitutes a return to the cardiopulmonary criteria that were used to pronounce donors of cadaver organs dead before the concept of brain death was adopted in the United States in the late 1960s and progressively took its place alongside the more traditional means for declaring a person dead on the basis of irreversible cessation of circulatory and respiratory functions. The use of non-heart-beating donors helped bring to the surface and intensify pervasive conceptual confusion and unease about the relationship between these dual means of determining and declaring death. It also raised troubling questions about the exact borderline between life and death; how long an interval should be observed after the complete cessation of cardiac and pulmonary function before death is pronounced; whether giving drugs to non-heart-beating donors to minimize the effects of warm ischemic time on the viability of their organs could hasten or cause their death; and the compatibility of procuring organs in this manner with the humane and respectful treatment of dying patients and their families (Fox; IOM, 1997; Arnold and Youngner; Youngner, Arnold, and DeVita).
BROADER STANDARDS FOR CADAVERIC ORGANS. Criteria for what are deemed to be acceptable cadaveric organs have also been "liberalized and expanded" in the drive to perform more transplants. These broadened, less stringent standards include using organs from donors of increasing age; from persons with medical conditions such as diabetes and hypertension and certain infections; and from persons with some hemodynamic instability or chemical imbalances, or whose organs have undergone increased preservation time (IOM, 1997). While transplant experts have hopefully predicted that using what are sometimes called such "marginal" organs could markedly increase the donor supply, they have acknowledged that the concomitant financial and human costs, and lower graft and recipient survival, should be seriously considered (IOM, 1997).
XENOTRANSPLANTATION. Along with the measures taken to increase the number of human donor organs, the 1990s brought a surge of renewed interest in xenotransplantation—grafting animal organs, tissues, and cells into human beings—accompanied by strong appeals to end the informal moratorium that had been called on interspecies organ transplants in the United States and numerous European countries because of the immediate postoperative deaths of all but one of the patients on whom the procedure had been previously tried. The reignited interest in xenotransplantation has been deliberated by bodies such as the U.S. Food and Drug Administration, the Centers for Disease Control and Prevention, the National Institutes of Health, and the National Academy of Sciences' Institute of Medicine. All these groups have focused special attention on the "greater than zero" risk that xenotransplants could trigger zoonosis, the transmission of known and unknown animal pathogens into the human population (IOM, 1996). In a historical era when the most daunting problems of world health emanate from the "emergence" and "reemergence" of infectious diseases in epidemic and pandemic proportions, this consideration has had a sobering and restraining effect on the intrepidness with which the prospect of providing animal organs for the long lines of people awaiting transplants has moved forward.
"REQUIRED REQUEST" AND "PRESUMED CONSENT."
Seeking remedies for the shortfall of organs has also involved identifying and attempting to alter attitudes and role behavior of physicians and nurses. In this connection, in the mid-1980s bioethicist Arthur L. Caplan proposed the establishment of "required-request" procedures in hospitals to ensure that the next of kin or the legal guardian of every potential donor was notified of the transplantation option and was asked to make a donation of their relative's organs for this purpose (Caplan, 1984a, 1984b). Although required request had been drafted into state and federal legislation and incorporated into hospital accreditation standards by the end of the 1980s, studies suggest that its influence has been minor (Annas; Caplan, 1988).
In Western Europe, serious attention has been given to the use of "presumed consent" or "opting out" as a way to increase the number of cadaveric organs. This is a system that legally allows the use of a deceased patient's organs for transplantation, unless the patient had formally registered the desire not to be a donor. This system has resulted in notable increases in organ procurement rates in a number of European countries. There is evidence, however, that if the "opting out" system requires the next of kin to be informed about organ removal from their dead relative before it is done, physicians may be less inclined to initiate the procurement process and families more likely to object to the donation. Opinion polls have shown that there is a strongly held and wide-ranging resistance to its establishment as a basis for organ and tissue procurement in the United States, as well as in Great Britain and the Netherlands (Kokkedee). It has been suggested, but not systematically investigated, that "opting out"—rather than "opting in"—may run counter to the social expectations and cultural values of individuals, families, and health professionals in these societies.
From "Gifts of Life" to Market Commodities?
Throughout its history in the United States, human organ transplantation has been steadfastly defined and ardently promoted as a gift of life, and the National Organ Transplant Act of 1984 made it illegal for "any person to knowingly acquire, receive, or otherwise transfer any human organ for valuable consideration for use in human transplantation." Nonetheless, recurrent proposals have been made to provide some sort of financial recompense for this act of giving. These proposals have had a dual purpose: to recognize what donors and their families have contributed and to provide an additional incentive for organ donation. None of the proposals has involved the outright buying and selling of organs. Rather, they have entailed various forms of so-called regulated compensation, or what has euphemistically been termed "rewarded gifting," such as granting a paid medical leave to living donors (the Organ Donor Leave Act, enacted in 1999) or advocating the partial reimbursement of funeral expenses for cadaveric donors. Among the most pecuniary of these suggested measures has been a Congressional proposal to give tax credits or refunds for an organ donation (the Gift of Life Tax Credit Act of 2001). The most market-oriented notion, espoused by some jurists, economists, and health policy analysts and managers, is that of a "futures market" in cadaveric organs that would allow healthy persons to contract for the sale of their organs for transplantation, to be retrieved and used after their death (Cohen; Hansmann). Neither the tax credits nor the futures market plan has been implemented.
The search to devise monetarily expressed incentives and rewards for organ donation that will help alleviate the organ shortage, without violating the prohibition against buying or selling organs, has been occurring in the larger context of the existence of a global black market for organs from living donors (Scheper-Hughes). In the United States, the search has been characterized by a continuous veering toward financial incentives and a continuous veering away from them. This ambivalence is exemplified by the outcome of a bill, originally signed into law in Pennsylvania in 1994, that created an Organ Donation Awareness Trust Fund, part of which was intended to pay up to $3,000 to a cadaver donor's family to defray funeral expenses, and to study the impact of this arrangement. After nearly eight years of debate and delay, state health officials abandoned the program on the grounds that it came too close to offering cash for organs. Instead, in 2002 they created a program to offer a modest $300 benefit to pay directly for food and lodging costs incurred by a donor's family (Wiggins). Another proposal, which "released a torrent of protest" during a committee hearing, was introduced in June 2002 by the Council on Ethical and Judicial Affairs of the American Medical Association (AMA); it involved offering a $300 to $500 payment to families of cadaveric donors and was coupled with a study to determine the effects of such payments. If the AMA House of Delegates approved the council's recommendations, however, a pilot study would require changes in the federal law that prohibits such financial incentives (Peck). To date, at least in American society, every such attempt to institute compensatory measures for organ donation has elicited as much concern and opposition as support; and it has called forth strong affirmations about the "symbolic" association of organ transplantation with "altruism" and "social good" and the importance of not subverting its meaning by monetarizing the gift that it constitutes (Delmonico et al.).
renÉe c. fox
judith p. swazey(1995)
revised by authors
SEE ALSO: Body: Cultural and Religious Perspectives; Cybernetics; Death, Definition and Determination of; Life, Quality of; Medicine, Anthropology of; Medicine, Sociology of; Organ and Tissue Procurement; Organ Transplants, Socio-cultural Aspects of
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