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Leaving the field.

As journeyers into the field, participant observers, and chroniclers, we have been involved in the development of organ transplantation, the artificial kidney, and the artificial heart throughout most of their contemporaneous medical and social history and for many years of our working lives. Since 1951 (RCF) and 1968 (JPS), we have had the privileged opportunity to watch from the inside how dialysis, and kidney, heart, and liver transplantation, which began as "desperate remedies for desperate patients," with certain "desperate[ly] hopeless" conditions,[1] evloved into "nonexperimental," though far from ordinary, interventions to treat a wide gamut of end-stage diseases. During those years we have seen the range and combinations of different organs transplanted, the numbers performed, and the array of artificial organs designed increase dramatically, and we have charted at first hand the early phases of the drive to replace the human heart with an artificial device.

Our intensive, long-term relationship with these therapeutic innovations and their clinical unfolding has had many of the characteristics anthropologist Margaret Mead identified as inherent to field research, no matter where it is located or what its subject matter may be. Field work, as she described it, entails not just the unique but also cumulative experience of immersing oneself in the ongoing life of another people, suspending for the time both one's beliefs and disbeliefs, and of simultaneously attempting to understand mentally and physically this other version of reality.... Immersing oneself in the field is good, but one must be careful not to drown. One must somehow maintain the delicate balance between empathic participation and self-awareness, on which the whole research process depends....

Only very slowly did we [field workers] begin to take into account that we ourselves change with each step of the journey, with each new image presented to us...and with each day in the field.[2]

Our research did not transport us to geographically and culturally isolated primitive villages, where we lived and worked day after day for months without the respite of returning to our home-world. Yet, in many crucial respects, our field experiences parallel those of Mead. We have journeyed far, horizontally and vertically, in our questining after transplantation, dialysis, and the artificial heart--coast to coast in this country, and to Europe, Hawaii, Majuro, and China; down long corridors into the high-technology surgical and intensive care chambers of the modern hospital; and ever more deeply into the corridors and chambers of ourselves. The people we have studied have been our "teachers" as well as our "subjects," helping us to learn their language and their ways. We have risen "at cock crow" to accompany transplant teams, donors, and recipients into operating rooms, and we have stayed up all night to "listen for some slight change" in a patient's or prospective donor's condition and to "revel or mourn" with medical professionals, patients, and families. We have "used ourselves as instruments," striving to attain and reattain the "kind of reflexive objectivity that calls for continuous self-scrutiny and self-analysis, along with observing and interpreting the actions and interactions of others." For years, as participating observers and observing participants, we have walked the thin line between detachment and concern and between "belief and disbelief." And like Mead, "only very slowly did we realize" that, as a consequence of our "immersion" in the field, deep and enduring changes were taking place in us.[3]

Foremost among the people whose "reality" we have been allowed to share are the physicians and nurses, patients and families who have been the chief actors in the "experiments perilous" through which organ transplants, dialysis, and the efforts to fashion a viable artificial heart have been advanced. It has kept us in close contact with the grave illnesses and frequent deaths they have mutually faced, with the hope and renewal, the "breakthroughs," the despair and dissappointments they have experienced, and with the ways of navigating and coping they have forged. We often have been enriched and energized by the many transplantation- and artificial organ-centered communities we entered and by the professional and personal relationships we have established within them. Our association with the human story of these therapeutic innovations, their scientific and clinical significance, and their social and moral import has never been academically detached. In fact, the process of disengaging ourselves from this field has made us feel at times as though we were getting a divorce, departing from a religious order, or forsaking comrades in crisis.

Our decision to leave the field has been a complex one and a long time in the making. Over the past decade or so, we gradually recognized in ourselves the signs and symptoms of what we diagnosed as "participant-observer burnout," akin to what we have witnessed over the years in some of the medical professionals immersed in the world of organ replacement efforts. Our burnout has its roots in the fact that there have been aspects of these efforts that we always have found especially troubling. Prominent among them have been some components of the "courage to fail" value system prevalent among transplantation and artificial organ pioneers. This ethos includes a classically American frontier outlook: heroic, pioneering, adventurous, optimistic, and determined. But it also involves a bellicose, "death is the enemy" perspective; a rescue-oriented and often zealous determination to maintain life at any cost; and a relentless, hubris-ridden refusal to accept limits. It is disturbing to witness, over and over, the travail and distress to which this outlook can subject patients:

I have often seen transplant surgeons, confronted with a clinical dilemma, begin to invoke a litany of names, like a litany of Roman Catholic saints [a transplant service chaplain reflects]: "It may be a real long shot," they say, "but remember Vernie and remember Toni and remember Carl and remember...and remember...and remember...." (The litany, which always consists of patients who survived against seemingly impossible odds, is used as an argument for pressing on. There does not seem to be a parallel list that would argue for giving up.)[4]

It is sometimes hard to meet the eyes of patients who have improved enough to have been moved to the regular postop floor and finally become alert enough to communicate their despair and disappointment..... Often, after entering the experience with such great hope, patients for whom transplantation has been a series of setbacks clearly articulate their feelings of betrayal: "No one ever told me it could be like this."

Certainly they were told that there would be no guarantees, and that it would be hard, and that there would be setbacks--but probably not how hard, or what some of the worst-case scenarios could be. When they were told, "You have to have a transplant or you're going to die," they were left a very slim margin for decision making. These people need to know not only what it will be like not to be dying any more, but what it may be like to not live so well.[5]

Another early source of unease was our conviction that if our society is to engage in such endeavors, we have a moral obligation to ensure equitable access to organ replacement. In the absence of such equity, we have observed again and again how specifically designated individuals have been privileged to obtain needed organs and funding for transplantation by wielding special emotional, media, political, and economic resources available to them, including, during the Reagan years, the power and resources of the presidency:

Rather than focusing on conditions that ultimately are defensible in terms of equality and justice,... designated... person-specific ... organ donation ... ties access to an organ to the emotional appeal (or lack thereof) of the prospective recipient, the public relations skills of the physician[s] involved, of the next-of-kin, and of those who orchestrate the media campaign, and the financial abilities of everyone concerned to mount such a campaign in the first place.... [I]n effect [it] ... singles out a specific individual and characterizes him or her as someone to whom an organ may be given independently of the established means of access. The assumption is that this person is ethically special; that he or she has some particular quality or characteristic that permits an exemption from the criteria that would otherwise apply to all.[6]

Our decision to leave the field actually occurred in two phases. Our first attempt to do so turned out to be no more than a brief moratorium. From 1979 to 1982, partly under the aegis of the James Picker Foundation Program on the Human Qualities of Medicine, we conducted targeted field research for a book of essays that would be a sequel to The Courage to Fail. It was during the course of this work, as we immersed ourselves once more in the "lived-in reality" of the world of organ replacement endeavors, that we first seriously discussed leaving this field.

Many people and experiences from those years remain indelibly etched in our minds. It was the identified cases, relationships, and advances that we were privileged to study at first hand that both powerfully bound us to the field for so long and, cumulatively, led us to withdraw from it. Among those still-vivid images are the vista of an empty thoracic cavity awaiting the implantation of a heart and lungs from a brain-dead donor at Stanford; the sight of desperate parents and their tiny, dying children with huge eyes, bloated bellies, pale, lifeless hair, and ocher-colored skin, who had made pilgrimages to Dr. Thomas Starzl in Pittsburgh to plead for a liver transplant; and, in both of these settings, the first exuberant discussions about the miracles that were being wrought by the discovery of cyclosporine.

Above all, it was the "identified lives"--the patients and families we came to know, some only slightly and others more intimately--that made us feel sadder and more anxious than we had in the past and filled us with painfully unanswerable questions of "why?" Though we had met him only briefly when he was a heart transplant patient at Stanford Medical Center, for example, we felt true human ties to Talcott (Sam) Poole and real sorrow when we read of his death from renal failure in December 1982 at age twenty-four. We thought also of his family and of his caregivers at Stanford, who were portrayed so vividly in an extraordinarily moving book by Sam's mother, Thursday's Child, which chronicled the onset of his incurable heart disease, his transplant and life thereafter, and his at-once joyous and stoical spirit through it all.

And then there was Doris, a close, kin-like friend whose "case" we had both studied and participated in personally and professionally for many years. We had talked many times with her and, after her death, with her family about trying to capture in a written "portrait" all that her story entailed about the worst and best of being a chronic dialysis patient. For she, more than any other person we have known, exemplified the finest elements of the "courage to fail" ethos in her life with progressive renal failure, several humanly and medically difficult years of dialysis, and then a death that represented some of the worst features of a "House of God" teaching hospital.[7] There is a sense in which we have vicariously experienced what Starzl has described as "the sense of personal loss" and "the cumulative weight of grief" that transplant surgeons like himself have undergone in response to the deaths of the "desperately ill" persons for whom they have cared, particularly the deaths of individuals who have come to personify for them the suffering of all their patients and the embodiment of their "determination to make things better" for them through transplantation. "The burnout rate," Starzl has observed, was especially "high in the early days of transplantation. Because of this, and because aging spares no one, only a handful of workers in transplantation have stayed in the field continuously throughout its 30-years modern history."[8]

Six weeks of field research during the summer of 1981 in the People's Republic of China also had a powerful impact on us.[9] During that era of the "four modernizations," China's medical workers had a collective commitment to "serving the patient" by progressively "scaling the heights" of modern medicine. It was part of a larger "golden dream" they shared with their compatriots about what science and technology might achieve for their country and its people. As part of this drive for medical modernization, hospitals in Tianjin were making their first forays into organ transplantation and chronic dialysis. As we watched these beginnings, we were vividly reminded of what Dr. Francis D. Moore has termed the "black years" of renal transplantation in the United States--complete with the high mortality rate of patients and organs and what would now be considered in our country and in Western Europe excessive doses of corticosteroid immunosuppressive drugs, with all their side effects. Absorbed though we were by many features of our Chinese field experience, we were reluctant to "go through again" what RCF observed forty years ago on the metabolic research ward of the Peter Bent Brigham Hospital in Boston, where renal transplantation and dialysis were pioneered.[10] We also found ourselves in the peculiar cultural and ideological position of being more preoccupied than our hosts with the allocation of scarce resources dilemma that their dawning interest in transplantation, dialysis, intensive care medicine, and other advanced forms of Western medicine would pose for a country as poor as China, with a population of over one billion persons and massive public health and primary care needs.

China also provided us with a societal telescope through which, from a great historical, cultural, and physical distance, we were able to connect our thoughts about transplantation and dialysis with our growing sociological and moral concern about the state of American ideas, values, and beliefs, as epitomized by the predominant themes of bioethics a decade ago. In a comparative analysis of "medical morality" in China and bioethics in the United States, we wrote that

if... bioethics is not just bioethics and is more than medical--if it is an indicator of the general state of American ideas, values and beliefs, of our collective self-knowledge, and our understanding of other societies' cultures--then there is every reason to be worried about who we are, what we have become, what we know, and where we are going in a greatly changed and changing society and world.[11]

Although we gathered a great deal of material between 1979 and 1982, we kept postponing the task of turning it into a book. Our problem, we finally admitted to ourselves, was that we had lost much of the detached concern that had enabled us to study and write about this field for so many years. Tellingly, by the end of 1982 we had drafted only the final essay in our unborn volume. It was called, as is this essay, "Leaving the Field," for we had decided that all the signs and symptoms of our self-diagnosed field worker and writerly malaise indicated that we should withdraw from our work on organ replacement.

In December 1982, as we were completing a draft of "Leaving the Field," newspapers headlined the first implantation of a permanent total artificial heart by Dr. William De Vries and his colleagues at the University of Utah Medical Center. For the next 112 days, we and millions of others followed the drama of Dr. Barney Clark's life and death with a Jarvik-7 heart. However, because of the extensive case study we had made of the total artificial heart implant Dr. Denton Cooley attempted in 1969,[12] the Barney Clark/William DeVries story had a magnetic effect on us, drawing us back into the field despite our resolve to leave it. And so, in June 1983 we found ourselves en route to Salt Lake City, for what we defined as a brief, one-time period of interviews and observations. However, more than five years passed before, in the fall of 1988, we completed what became a detailed and profoundly disquieting study of the development and use of the Jarvik heart. It was that research project and some of the participant observation experiences associated with it that brought our journeying into this field of medical research and therapeutic innovation to a definitive end.

During the 1980s we also continued to monitor developments and issues in transplantation and dialysis, and our uneasiness about the attributes and side-effects of organ replacement endeavors continued to grow. It has become increasingly difficult for us to "suspend [our] beliefs and disbeliefs," and "maintain the delicate balance" between "immersion" and detachment that field work optimally requires.[13] Through the ongoing process of self-scrutiny and self-analysis that participant observation also entails, we have recognized that our years in the field have made us more, rather than less emotionally and morally perturbable. For example, we found ourselves responding with stronger negative sentiments than in the past to such deja vu experiences as hearing some of the same transplanters who proclaimed the "cosmic" significance of cyclosporine now hail the newly discovered experimental immunosuppressive agent FK 506 as a once-in-a-lifetime miracle drug and learning that the Boy Scouts of America are offering a Donor Awareness Patch to induce scouts to talk to their families about organ donation. We reacted with concern to a proposal by Paul I. Terasaki, a pioneer of transplantation tissue-typing methods, that organ recipients "who are now enjoying a second chance at life, thanks to the compassionate generosity of the families of donors" be organized into "a trained ... volunteer ... self-perpetuating advocacy group" that could "take turns being on call to ask grieving families to consider organ donations," "visit hospital personnel ... who ... have limited personal contact with ... a person who has been given life and health with someone else's heart, liver, or kidney," and "promote awareness" of the "mounting ... need" for donations of cadaveric organs.[14] When we read about multiple organ transplants, liver-donar liver and lung transplants, conceiving children to serve as bone marrow donors, the temporary use of diseased donor hearts, and about the merits of markets in human body parts--often referred to simply as "HBPs"--we wondered, as does philosopher Daniel Callahan, "what kind of life" our values are driving us to seek, and whether we can accept "limits to medical progress."[15]

We are not therapeutic nihilists, nor do we lack appreciation for the impressive medical, surgical, and technological progress that has been made with transplants and artificial organs over the course of the past three decades, or just in the past ten years. If anything, our in vivo historical relationship to their development has heightened our recognition of just how far they have advanced. Nor have we lost our capacity to respond with empathy to the "stories with happy endings," and to those that tragically never came to pass. "For my family and me," a friend wrote us,

the pain and grief of losing Jack was complicated by the bitter disappointment that we did not receive a heart in time to sustain his life. Intellectually, I know this is an incontrovertible fact. Emotionally, I know that we, his family, were his life and all of you are helping to sustain us. Perhaps, John did receive a heart. Although few of you knew him, you gave him yours.

But we have come to believe that the missionary-like ardor about organ replacement that now exists, the overidealization of the quality and duration of life that can ensue, and the seemingly limitless attempts to procure and implant organs that are currently taking place have gotten out of hand. In the words of a transplant nurse-specialist, "perhaps the most important issue in a critical examination of transplantation involves the need and criteria for responsible decisions about when to stop, when to say 'enough is enough' to the transplant process."[16]

In our view, the field of organ replacement now epitomizes a very different and powerful tendency in the American health care system and in the value and belief system of our society's culture: our pervasive reluctance to accept the limits to the biological and human condition imposed by the aging process and our ultimate mortality, to which we are all subject. It seems to us that many of the current replacement endeavors represent an obdurate, publicly theatricalized refusal to accept these limitations. Physicians are morally guided by what the late Protestant theologian and ethicist Paul Ramsey called principles of "faithfulness" and "loyalty" not to abandon caring for their patients, particularly those who are dying. Ramsey also argued forcibly, however, that we "need ... to discover the moral limits properly surrounding efforts to save life."[17] With this conviction, we think that he would have joined us in questioning the enactment of the principle of faithfulness in the unremitting efforts of transplant surgeons to prevent the death of their patients by doing numerous retransplants if the donor organ "fails for any reasons," because they believe that "once a patient has had a transplant [they] have made a commitment that cannot be abandoned."[18]

Rereading Ramsey's The Patient as Person, twenty years after it was first published, we were deeply impressed by how prophetic it has proved to be with respect to our social and cultural problems in accepting limits on organ replacement and the care of dying patients. Culturally, Ramsey argued persuasively, we need to "recover a religious sense that death is not an evil that ought always to be opposed."

If it is not possible for modern men, when the one "lone hope" is gone, to believe that this is not the end of hope, perhaps we might share the conviction of Socrates, who said, "Now it is time that we were going, I to die and you to live, but which of us has the happier prospect, is unknown to anyone but God." That outlook, too, might save men and doctors today from the triumphalist temptation to slash and suture our way to eternal life. (p. 238)

A recollection comes to mind of a field trip that one of us [RCF] made during the late 1970s to a dialysis center located on a small, 3.5 square mile atoll in the Marshall Islands that was supervised from afar by the Institute of Renal Diseases of St. Francis Hospital in Honolulu, Hawaii. For both of us, that coral atoll symbolizes the antithesis of a palm-fringed tropical paradise. It represents the unromantic specter of a world in which every island, no matter how small or remote, will some day have its own machines and personnel to which all persons in end-stage organ failure will be given unconditional access, until death releases them from this form of treatment, or they can be airlifted to a medical center like St. Francis for transplantation.

As we look back, we realize that it is not only we who have been changed by the cumulative effects that our field research has had on us. The field itself has changed, especially during the 1980s, in certain ways that have influenced our decision to exit it. Above all, it is the intensity and expansion of the drive to sustain life and "rebuild people" through organ replacement that has progressively alienated us, particularly the unquestioning and even celebratory way in which the transplanting and retransplanting of virtually every organ of the human body is creating larger and larger numbers of "patchwork men and women,"[19] whose quality of life is dubious at best. "Our culture," Ramsey observed, "is already prepared for technocratizing the bodily life into collections of parts in which consciousness somehow has residence for a time" (p. 193).

In addition, the determination to procure organs has become so powerful that we feel there is an almost predatory obliviousness to "where [the] organs come from, and how [the] donors died." We share George Annas's indignation over what he terms the "denial of reality" that underlies the current policy of avidly promoting organ donation and transplantation without publicly acknowledging the kinds of death--from vehicular accidents, homicides, suicides--on which they are based.[20]

However, we disagree with what Annas goes on to say: namely, that it is not only important and right that "we all should know the stories of donors," but also that the donor's family, the recipient, and the recipient's family should know each other's identity. In his view, the norm of confidentiality that transplant teams have established does more to protect their own emotional equilibrium than that of donors, recipients, and their families. Here we part company with Annas because, like so many analysts commenting on organ transplants in the 1980s, he has not sufficiently taken into account the importance of the gift-exchange dimensions of organ donation, the stresses and burdens that the obligations of giving, receiving, and repaying it impose on donors and recipients, or how the policy of confidentiality developed out of transplanters' desire to reduce the "tyranny" of this unrepayable, symbolically charged gift. It seems to us that what Annas has overlooked is a specific instance of a more general trend during the 1980s that is another factor propelling us out of the field. It is the present tendency to minimize the importance of the "theme of gift" and of the gift relation in organ transplantation and to systematically ignore, forget, or deny what was previously known about them. Such disregard for the dynamics and meaning of the gift exchange involved has characterized most of the live-donor liver, lung, and pancreas transplants conducted during the last few years.

Nowhere is the tendency to discount the gift dimension more patently (and to us distressingly) apparent than in the movement toward the "commodification" and "marketification" of the organs. This development was one theme in a 1988 symposium on organ transplantation policy, in which proponents of a market economy for human body parts wondered why transplantation has not joined the "mainstream" of American medicine: Does the difference in policy prescription in the organ transplantation arena reflect a kind of sub rosa, underground rejection of the trend toward greater competition, pluralism, and decentralization in the health care industry, or are there certain peculiar characteristics of the organ transplantation enterprise that suggest the inapplicability of competition, pluralism, and decentralization in this specific industry?[21]

Arguing, as this representative passage does, that organ transplantation, like health care in general, is analogous to a commercial industry and product and that its nonconformity to a market model is not only curious but possibly subversive makes it difficult for us to identify with the way that transplants, and medicine more generally, are now being conceived and interpreted.

The "de-gifting" of transplantation that this market approach entails has been accompanied and reinforced by the progressive "biologization" of donated organs that has occurred during the 1980s and early 1990s. Increasingly, organs are being thought of as "just organs," rather than as living parts of a person, offered in life or death to sustain known or unknown others, that resonate with the symbolic meaning of our relationship to our bodies, our selves, and to each other, and with the more than fleshly significance of what has been given and received. We believe that this biological reductionism (which as sociologist Howard L. Kaye points out is not confined to transplantation but pervades modern biology) has insidious implications for "how we conceive of ourselves as human beings," of our connectedness with others, "and thus how we conceive of a good and proper life."[22]

We are deeply troubled by the subtle but powerful tendency to redefine ourselves and others "as essentially biological beings" that is being displayed in current attitudes toward the transplantation of solid organs, tissues, and other body parts. Not only has this living matter been terminologically reduced to "HBPs," but what we regard as something approaching the plundering of the newly deceased person's body is taking place. In May 1991, when the news surfaced that a young organ donor (twenty-two-year-old William Norwood, who had been fatally shot in a gas station holdup) had been infected with the AIDS virus, and a search was launched for the recipients of his organs and tissues, we were struck by the fact that some fifty-six of his body parts went to people in different regions of the country. On the one hand, we are impressed by the magnitude of such gifts and by the numbers of persons who could be helped by them. On the other hand, we wonder if our avidness to procure as many organs and tissues as possible is leading us to unreflectively disassemble and dehumanize the body.

One of the most urgent value questions that has emerged from our long professional immersion in the world of "spare parts" medicine is whether, as poverty, homelessness, and lack of access to health care increase in our affluent country, it is justifiable for American society to be devoting so much of its intellectual energy and human and financial resources to the replacement of human organs. We realize that in terms of the ways our society provides, allocates, and expends resources within the "medical commons," the aggregate volume and costs of organ replacements are a relatively small portion of medical care activities and expenditures. Nor, given the benefits that many patients may derive from transplants and artificial devices, do we suppose that all organ replacement endeavors should--or conceivably would--cease. We do believe that all the professional and public consideration given to transplants and pursuits such as a permanent artificial heart and the societal value commitments that organ replacement epitomizes are helping to divert attention and human and financial resources away from far more basic and widespread public and individual health care needs in our society.

We still believe that the ultimate significance of these therapeutic modalities lies in their relationship to metamedical themes: uncertainty, scarcity, and generosity; the just distribution of material and nonmaterial resources; of solidarity and community; life, death, and meaning; and intervention in the human condition. We also share health policy analyst Emily Friedman's passionate conviction that a "silent, largely invisible epidemic [of] medical indigence" has become the most tragically serious health care problem in the United States; that "the noncoverage of the uninsured poor and their resultant lack of access [to health care] affect every American"; that ignoring or accepting this situation puts us "all at risk," because "a society that forces its most vulnerable and needy members to beg for crumbs of care, or to go without care until they are dying, harms itself [and its moral fabric] even more than it harms the victims of its cruelty."[23] Allowing ourselves to become too caught up in such problems as the shortage of transplantable organs while health care continues to be defined as a private consumption rather than a social good in American society, with the consequence that millions of people do not have adequate or even minimally decent care, speaks to a values framework and a vision of medical progress that we find medically and morally untenable. The predicament of these deprived and fragile members of our society has changed the ethical context of transplantation and artificial organs for us; and it is one of the most morally compelling reasons for our leaving the field.

By happenstance, the time we chose to write about organ replacement in the 1980s coincided with a marked escalation of biomedical and technological developments, and of social attention to them. At first, we thought that the groundswell of activity that we perceived in the organ replacement sphere was a kind of optical illusion, caused by our heightened awareness of the field from which we were taking leave and our ambivalence about doing so. Sheer "observer effect," however, cannot account for the remarkable concatenation of events that took place from July 1989 to June 1992. During that interval, for example, the volume of transplants and the audible concern about the scarcity of organs and tissues, their procurement, and allocation mounted appreciably. An array of cluster transplants gained momentum and prominence; their chief performer and promoter, Thomas Starzl, did the first human heart-liver-kidney multiple transplant in December 1989 in a twenty-six-year-old woman who died in March 1990 of complications from hepatitis. Professional and public debate about the feasibility and ethicality of using anencephalic infants as organ donors flared up in response to the Loma Linda Medical Center's program and their subsequent decision to suspend it. Clinical trials were conducted with the transplantation of cadaver organs from persons generally regarded as too biologically old to be donors and with using "flawed" organs for temporary transplants. In October 1989, FK 506, a powerful antirejection agent, burst on the scene. In December 1989, accompanied by considerable fanfare, the first two American transplantations of liver lobes from live donor parents to infants with biliary atresia were performed at the University of Chicago Medical Center, followed by the first parent-to-child lung lobe transplants and the beginning of professional and public debate about the morality of parents conceiving a baby to serve as a bone marrow donor for another of their children. January 1990 brought the announcement that researchers were preparing for their first human tests of a temporary artificial lung, developed by a company in Salt Lake City. Simultaneously, the Jarvik-7 artificial heart made headlines again when the FDA officially withdrew approval of the device's continued experimental use because of deficiencies in its manufacture and quality control and in the monitoring of its clinical use. A year later the artificial heart again began to attract attention, as researchers moved toward their goal of the first human tests with a new generation of electrically powered devices to replace the functions of the human heart on a long-term basis. And most recently, in late June 1992 the surgical team headed by Starzl transplanted a baboon's liver into the body of a thirty-five-year-old man dying of hepatitis B virus.

In the final analysis, our departure from the field in the midst of such events is not only impelled by our need and desire to distance ourselves from them emotionally. It is also a value statement on our part. By our leave-taking we are intentionally separating ourselves from what we believe has become an overly zealous medical and societal commitment to the endless perpetuation of life and to repairing and rebuilding people through organ replacement--and from the human suffering, and the social, cultural, and spiritual harm we believe such unexamined excess can, and already has, brought in its wake.


[1.] Francis D. Moore, "The Desperate Case: CARE (Costs, Applicability, Research, Ethics)," JAMA 261 (10 March 1989): 1483-84, at 1483.

[2.] Margaret Mead, Letters from the Field, 1925-1975 (New York: Harper & Row, 1977), pp. 1, 7, 15.

[3.] Mead, Letters from the Field, pp. 1-16.

[4.] Leslie G. Reimer, "The Power of the Individual's Story," Second Opinion 12 (November 1989): 40-45.

[5.] Patricia M. Park, "The Transplant Odyssey," Second Opinion 12 (November 1989): 27-32.

[6.] Eike-Henner W. Kluge, "Designated Organ Donation: Private Choice in Social Context," Hastings Center Report 19, no. 5 (1989): 10-16.

[7.] Samuel Shem, The House of God (New York: Dell Books, 1978).

[8.] Thomas E. Starzl, "Comments on the Death of Stormie James," unpublished, 1990.

[9.] Renee C. Fox and Judith P. Swazey, "Critical Care at Tianjin's First Central Hospital and the Fourth Modernization," Science 217 (20 August 1982): 700-705; Renee C. Fox and Judith P. Swazey, "Medical Morality Is Not Bioethics: Medical Ethics in China and the United States," Perspectives in Biology and Medicine 27, no. 3 (1984): 336-60.

[10.] Renee C. Fox, Experiment Perilous, rpt. ed. (Free Press, 1959; Philadelphia: University of Pennsylvania Press, 1974).

[11.] Fox and Swazey, "Medical Morality," p. 360.

[12.] Renee C. Fox and Judith P. Swazey, The Courage to Fail: A social View of Organ Transplants and Dialysis, 2d rev. ed. (Chicago: University of Chicago Press, 1978), ch. 6.

[13.] Mead, Letters from the Field.

[14.] Paul I. Terasaki, "A Proposal to Increase Donations of Cadaveric Organs," NEJM 321 (31 August 1989): 618-19.

[15.] Daniel Callahan, What Kind of Life? The Limits of Medical Progress (New York: Simon & Schuster, 1989).

[16.] Park, "The Transplant Odyssey," p. 30.

[17.] Paul Ramsey, The Patient as Person: Explorations in Medical Ethics (New Haven: Yale University Press, 1970), p. 118.

[18.] Park, "The Transplant Odyssey," p. 30.

[19.] Lawrence K. Altman, "Tracking a New Drug from the Soil in Japan to Organ Transplants," New York Times, 31 October 1989.

[20.] George J. Annas, "Feeling Good about Recycled Hearts," Second Opinion 12 (November 1989): 33-39, at 34; George J. Annas, "The Paradoxes of Organ Transplantation," American Journal of Public Health 78 (June 1988): 621-22.

[21.] James F. Blumenstein and Frank A. Sloan, eds., Organ Transplantation Policy: Issues and Prospects (Durham, N.C.: Duke University Press, 1989), pp. 1-2.

[22.] Howard L. Kaye, The Social Meaning of Modern Biology (New Haven: Yale University Press, 1986).

[23.] Emily Friedman, "The Torturer's Horse," JAMA 216 (10 March 1989): 1481-82.
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Title Annotation:ethical aspects of organ transplantation
Author:Fox, Renee C.; Swazey, Judith P.
Publication:The Hastings Center Report
Date:Sep 1, 1992
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