Organ Donation and Transplantation: Body Organs as an Exchangeable Socio-Cultural Resource

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ORGAN DONATION AND TRANSPLANTATION

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ORGAN DONATION AND TRANSPLANTATION Body Organs

as an Exchangeable

Socio-Cultural Resource Orit Brawer Ben-David

PRAEGER

Westport, Connecticut L o n d o n

Library of Congress Cataloging-in-Publication Data Ben-David, Orit Brawer. Organ donation and transplantation : body organs as an exchangeable socio-cultural resource / Orit Brawer Ben-David, p. cm. Includes bibliographical references and index. ISBN 0-275-97918-0 (alk. paper) 1. Donation of organs, tissues, etc.—Social aspects. 2. Transplantation of organs, tissues, etc.—Social aspects. 3. Medical anthropology. 4. Ethnology. I. Title. [DNLM: 1. Organ Transplantation—psychology. 2. Tissue and Organ Procurement—ethics. 3. Anthropology, Cultural. 4. Commodification. 5. Sociology, Medical. WO 660 B456o 2005] RD129.5.B46 2005 617.9'5—dc22 2005006041 British Library Cataloguing in Publication Data is available. Copyright © 2005 by Orit Brawer Ben-David All rights reserved. No portion of this book may be reproduced, by any process or technique, without the express written consent of the publisher. Library of Congress Catalog Card Number: 2005006041 ISBN: 0-275-97918-0 First published in 2005 Praeger Publishers, 88 Post Road West, Westport, CT 06881 An imprint of Greenwood Publishing Group, Inc. www.praeger.com Printed in the United States of America

& The paper used in this book complies with the Permanent Paper Standard issued by the National Information Standards Organization (Z39.48-1984). 10 9 8 7 6 5 4 3 2 1

To my parents, Rina and Moshe Brawer, who brought me up with loving kindness to ponder and reflect and to perceive the thoughts and feelings of others with sensitivity


i^ontents

Acknowledgments

ix

Preface

xi

Introduction

xv

1

Journey into the Medical World

1

2

Partners for a Common Destiny

11

3

Is Organ Transplantation a Gift Exchange?

49

4

The Body in Organ Transplantation

83

5

Life and Death

105

6

In Their Death, They Will Their Lives to Others

131

Bibliography

153

Index

163


Acknowledgments

This book is dedicated to all those who in death gave life to others, and to their families, whose magnanimity made this possible. I thank all those—candidates for organ transplantation, organ transplantees, and donor families—who have opened the doors of their hearts and their homes and shared their thoughts with me. This book would never have seen light without their help. I am deeply indebted to the members of the medical team who smoothed the path of my research by devoting much of their valuable time to me: Professors Borman, Guttman, Tur-Caspah, Merrin, and Shuval; and Drs. Harrari, Weiser, Weinstein, Katz, and Krenmer. I wish also to express my gratitude to Dr. Rinah Rahmani, Mrs. Ruth Weiss, and Mrs. Tamar Ashkenazi of the Adi Association. My special thanks go to Mrs. Sylvia Isick, whose advice and encouragement were invaluable at the beginning of this work, and to Mrs. Nurit Wolfson-Shomron and Mrs. Irit Yagen, whose enthusiasm made it possible for me to carry out this research. I wish to express my very grateful appreciation to Professors Haim Hazan and Emmanuel Marks, under whose scientific direction I prepared this study. They were unfailingly willing to give me their attention and to provide me with the benefit of their experience. I am enriched by their wisdom. I send my thanks to the many others who assisted me both directly and indirectly. The list is too long to record here. I am grateful to the late Mr. Phillip Gillon for his translation and to Mr. Ezra (Bill) Aaronson and Ms. Cecilia Cohen for their editing, linguistic comments, and clarifications.

x Acknowledgments I should like to thank my beloved family. My husband Rami, who gave me his unlimited support throughout the work. Yehudah and Simon, who gave up a little corner of their house for me to meditate in, in peace and quiet. Gilli, Solly, Shai, Liri, Yotam, Dar, and Doron, who, in their own ways, helped me; and to Dr. Ricardo Krakover, who explained to me some of the mysteries of cardiology. Finally, I wish to thank the Israeli Organization for Research Funding for its help during the study.

Preface

The telephone rang in my home at 3:00 p.m. on the second day of the Jewish new year. On the line was the nurse responsible for coordinating organ transplants in a hospital in the central region of Israel. She said, "We are going to perform three organ transplants today. A donor somewhere in the south of Israel is providing a heart and two lungs. Some members of our transplant team are leaving the hospital at 4:00 p.m. The recipients chosen to receive the organs are already on their way here. You must hurry." I needed no further explanations from the coordinating nurse, whom I knew well. I knew that by "donor" she meant the body of a deceased person, from which vital organs would be donated to save the lives of people whose own were no longer functioning adequately; the "recipients" were the candidates for transplants who had been selected by the hospital's organ-transplant team. I was very excited when I put down the receiver. I had been waiting so many weeks for this moment. I thought of the recipients making their way to the hospital. They, too, must have been very excited; they had waited anxiously for the surgery they were about to undergo. If successful, it would not only prolong but also transform the quality of their lives. My mind dwelt on the "donor," too, and on the way his or her life had ended—how the donor's family had suffered the tragic loss of someone they loved. While still in a state of shock, the family members had been called upon to make the fateful decision to donate their loved one's organs. Somebody had to die that others might live longer. I hurried to the hospital. When I reached it, I was rather surprised to find that no frenzied preparations for an extraordinary event were under

xii

Preface

way. Everybody was cool, calm, and collected. The coordinating nurse gave me the green garments that all operating-theater personnel wear. She also gave me felt overshoes and what looked like a bathing cap. "We don't want you to look too conspicuous, do we?" she said. After I had changed into the garments, she took me into the sterile operatingtheater area and then escorted me into a recovery ward where the three recipients, two men and a woman, were waiting. Joseph, about fifty years old, was the candidate for a heart transplant. Ahmed, about twenty-five, was to receive one of the donor's lungs. The other lung was destined to go to forty-five-year-old Yaffa. The recipients were prepared for the operation. Yaffa had arrived looking very elegant in a black outfit and wearing gold shoes. She was heavily made up, wore jewelry, and had had her fingernails reddened with lacquer. The two men wore ordinary clothes. All three were told to undress and to put on the cotton gowns given to them. Yaffa was asked to remove the red lacquer from her fingernails and to hand all her jewelry to her daughter. Gradually, by undressing, they seemed to lose their identities as persons. The nurses stopped calling them by their names. Later on, when the nurses planned where to put the patients, one said, "The heart will lie over here; one lung, over there; and the other lung, over there," pointing to three beds. The only nurse who spoke differently was the coordinator, who continued to address the heart candidate by his name, Joseph; she had known him for a considerable time. Before the recipients were taken into the operating theaters, their blood and urine were tested, and several x-rays were taken. The doctors and nurses explained to them what would happen until they lost consciousness as a result of being anesthetized, and what would happen when they woke up after their operations. All this time, the patients lay as still as possible, listening carefully to every word. One of the doctors asked Joseph if he was anxious, to which Joseph replied, " N o . " The doctor exclaimed, "You are amazingly cool!" Neither of the other two patients said a word. Apart from this incident with Joseph, nobody seemed interested in the feelings of the patients. More and more surgeons gathered in the recovery room. Each of them examined the documents about the patients, selecting information relevant to his particular field of expertise. There was a brief discussion about who would do what after the operation started. The head of the Department of Cardiovascular Surgery, a professor, arrived. He announced that they would begin with the heart and do the two lungs afterward. There was no debate. The professor said simply, "You come from this side, go in, and arrive there." The professor concluded after giving each surgeon and nurse final instructions about what he or she was to do. It was reminiscent of a military action, in which

Preface xiii the officers would give crisp orders to all the soldiers. None of the surgeons seemed to anticipate any difficulties. At first nobody took any notice of me, but when it became clear that I was the only one who had no role to play in the operation, I was asked to explain what I was doing there. When I said that I was an anthropologist engaged in research, there were vague smiles. Nobody suggested that I should leave. The candidates were then brought into the operating theater on mobile beds. Members of their families had been allowed to accompany them only as far as the passage leading to the theater. At that point, they had to part. One more embrace, one last kiss, and then the people they loved disappeared into the unknown, either to die or to be reborn. Joseph's wife was standing in the corridor with her two sons when one of the doctors came out of the theater. She expressed her desperate anxiety, but he told her not to worry. He spent a few minutes explaining to her what was going to happen, although both knew that she had heard it all many times before. She begged him to keep in touch with her throughout the operation, and he said that he would try to do so. He added, "Are you all right? Would you like a nurse to bring you some Valium?" "I'm okay—I'll manage," she answered. "You and your sons should hold hands tight, and support each other," he suggested, cynically turning away. The relatives went to a waiting room, where they would have to endure many agonizing hours. The doctors engaged in the final preparations to anesthetize the candidates, open their chest cavities, extract the vital organs that were being replaced, and implant the new organs. While one team was preparing to "play God" and give new life to the three patients, somewhere in the south another medical team was busy removing organs from the corpse of the donor. They described what they were doing as "harvesting the organs." There in the south was a family whose world had become dark; over here were others who could see a ray of light and hope for a new life. I went out of the theater to the room where the relatives of the recipients were sitting. Whenever they got a chance, they asked a doctor or nurse for the name of the surgeon who would actually perform the operation. They wanted to be able to hold onto something definite and concrete within the uncertainty that surrounded them, but they were always put off with the reply that it was a team of five or six surgeons operating. When the coordinating nurse entered the room, Joseph's wife said to her, "All these months, poor Joseph was so terrified." The nurse answered, "Of course. He feared that every breath he took might be his last. That time is past forever." At 8:00 p.m., a message came that the organs were on the way. Until then, the coordinating nurse and I moved between one world inside the

xiv

Preface

theater and another in the waiting room. The coordinating nurse had schooled the families of the recipients on how they should behave after the operations were over. She had said to them, "You must understand that it is very important for you to cooperate and carry out the instructions of the doctors to the letter." In a sense, from the moment that the hospital accepted their loved ones for transplants, the candidates belonged to the hospital, and it forbade the families to interfere with the doctors in any way and obliged them to fulfill the doctors' instructions to the letter. At 9:30 p.m., the medical team arrived from the south. They were carrying a large picnic box. The organs were packed in it in ice. When they went into one of the operating theaters, I managed to snatch a peep at what they were doing. The organs—the heart and the two lungs—were transferred to three stainless steel bowls. A random thought flitted through my head: "It's like a butcher's shop." In other operating theaters, the doctors were preparing for the last stages of the operations. The patients, fully anesthetized, looked like corpses. Yet I knew that in a short while the doctors would cut, take out a diseased organ, implant a healthy one, sew up the patients, and the apparent corpses would be transformed into new human beings, with thoughts, desires, feelings, and friendships. They would feel that they had been reborn. I knew that most recipients celebrated the dates of their transplants as new birthdays. The operations went on, every participant performing his or her technical task with almost incredible skill. It is difficult to explain my own feelings as I reached this climax to the work 1 had been doing for years. Since I had come to the hospital and gone through its doors in response to the call from the coordinating nurse, I felt that 1 was in a film. I had been waiting for this moment for such a long time. I had been filling out forms, establishing human relations, reading about the operation, and interviewing candidates and medical staff. N o w , finally, I was witnessing the actual occurrence. While the doctors were engaged in this complex, practical activity in the operating theater, on the other side of the wall, in the waiting room, the family members were intensely involved in the social, human content of the process and were calculating their obligations and the potential benefits. Afterward, on the radio, a reporter covering the transplant revealed details about the donor. Yaffa's sister expressed her shock that these particulars had been made public. The coordinating nurse said to her, "Obviously for every transplant that becomes possible, somebody has to die. There is no need for you to develop guilt feelings about the deceased. Think of the new life that lies ahead for your sister." I thought to myself, "What is happening here is an exchange between death and life."

Introduction

This book deals with life and death and the possibility of exchanging death for life in a social process. It explores the subject by concentrating on a process definable as both medical and technological, namely organ transplantation. Organ transplantation is preeminently a socio-cultural activity, made possible medically by virtue of this quality. Apart from the medical and technical problems involved in organ transplantation, there are also social and ethical questions that arise in the framework of the society to which "donor" and "recipient" belong. The discussion of organ transplantation concentrates on the exchange relations created as a result of the process. Transplants are effected at two levels, one concrete and the other abstract and symbolic. At the concrete level, one transfers an organ from one body, defined as "dead," to another, defined as "living." In an abstract and symbolic context, an exchange takes place between death and life. In fact, it is the concept of exchange that explains the mechanism by which the act becomes possible. A central question arises about how human organs become exchangeable resources. In order to answer this question, it is necessary to clarify a number of matters involved in exchange systems in general. This clarification requires an examination of the limits of the theory of exchange, to provide a theoretical framework for a discussion of the transplantation of human organs. How do the parties to the exchange define the exchanged object? How is its value determined? Do all the parties to the transaction agree about these matters? Another set of questions that arises relates to relations that develop during the process of the exchange, or

xvi

Introduction

because of it, since it is fundamentally an interaction. Additional questions to resolve concern the identity of the partners to the transaction, whether they are all directly connected with one another, and the method of exchange. Three groups of players participate in such transactions: the candidates for organ transplants, the donor families, and the medical team. Each of these groups has different interests motivating it to participate in the exchange process. Although different concepts and interests activate the players, they come together, because doing so is of such great importance to them all. Their interests coincide in an interactive process despite the contrast between their motives, and they reach agreement on a common method of action and on the practical details involved. In this process the medical team gains power and prestige as the mediator and also increased possibilities for research budgets. The candidates gain a new lease on life. The donor families gain social recognition and an illusion of immortality for the departed. In practice, the exchange of organs is effected in a hospital with a medical team functioning as a mediator who profits by getting both prestige and research stipends. In addition to clarifying the relations between the parties directly involved in the exchange, one must also investigate the relations between the parties and the intermediary. The arrangement does not take place in a vacuum but within a specific society. Therefore, it is essential to examine the parties' social motivations. The answers to the questions detailed above should make it possible to describe theoretically the systems of exchange relations involved. They should explain who gives what to whom, when, how much, and how. Nevertheless, these answers do not explain the reason for the particular manner of the exchange. Similarly, the answers do not clarify the social perceptions that dictate the particular type of exchange. The discussion has to focus on two main subjects: the body and death. Socio-cultural perceptions of body and death make the exchange possible in some societies but may preclude it in others. I have found that body organs become an exchangeable socio-cultural resource not only by means of a social exchange system but also according to an ideology. This realization prompted me to ask some more questions concerning the exchange partners' different perceptions of the body and their definitions of death. I obtained some answers while interviewing the transplant parties. During my visits, I also heard the parties expressing their opinions in discussions among themselves. Apart from such direct statements from them, I got information about their broad socio-cultural milieus from newspaper articles, radio, and television programs. This leads to the conclusion that body organs become an appropriate socio-cultural resource for exchange, through a social agreement among

Introduction

xvii

people who regard death in an unambiguous and unequivocal way and find it acceptable to look upon the body as a machine composed of exchangeable parts, like the parts of an automobile. Such exchanges take place within the common belief that the transfer of organs from body to body is, in a physical sense, also a transfer of life. In this process of exchange, the thing exchanged is the body organ, which constitutes a socio-cultural resource. It is my claim that each partner's perceptions of bodily image determine the value of body organs. These perceptions are the outcome of concrete situations that they have experienced individually. Thus, rather than an economic value, the resource has a symbolic, social value that derives from social perceptions. A cultural capital enables each group to adopt a conception of the body that accords with its own interests. The exchange process would not be possible unless each side had realizable and socially legitimate interests. In some societies (e.g., Brazil, China, eastern Europe, India, and Taiwan), body organs are traded. In such societies, organs have economic values— they are traded like other objects. This type of exchange does not usually gain the official and moral legitimation of its society. It is, therefore, not conducted through intermediaries of the society's representative but by private ways. In many Western countries, exchange systems can operate only within a social framework and through an intermediary—the medical team—to whom society has granted the mandate to organize the system. This mandate relies on the social consent that generalized exchange relations exist between individuals and between individuals and society, and that in such relations there may be contribution without the prospect of immediate return. In organ transplantation, the willingness of the individual to donate his own personal resources for the common good often has to overcome difficulties, since the donated resource is the body itself. From the point of view of Israeli social mores, such social exchange relations are more possible on a national level than on a personal level; for in the process of exchange, the private organs become a national resource. The book is based on observations, interviews, and much material from the media, all gathered in a study carried out in Israel from 1991 on, and continuously brought up to date. Chapter 1, "Journey into the Medical World," deals with the methodology and difficulties of qualitative research in the medical field. Chapter 2, "Partners for a Common Destiny," focuses on the roles, the system of relations, and the motives of the population studied: medical staff, donor families, and recipients. Chapter 3, "Is Organ Transplantation a Gift Exchange?" suggests the main subjects that social exchange theory deals with and considers the theory's limitations as a theoretical framework in a discussion of organ transplantation.

xviii

Introduction

Chapter 4, "The Body in Organ Transplantation," presents the social and private aspects of the body. Most theoreticians who deal with the body discuss it in cultural terms. They discuss the effects of modernity and rationality on cultural concepts of the body, and the differentiation between culture and nature in this respect. This chapter shows how these concepts are the outcomes of individual experiences and situations. Chapter 5, "Life and Death," deals with the relations between life and death. Cultural concepts of death are ineradicably connected with concepts of the body. The chapter presents various transplantation participants' concepts of death. Chapter 6, "In Their Death, They Will Their Lives to Others," explains how, through death, a cultural concept of life and death can promote a symbolic connection between the individual body and the social group. The chapter discusses this by means of a case study of the Israeli society, which has experienced frequent bereavement and has established an unambiguous hierarchy of heroic, natural, and accidental death.

Lhapler 1

Journey into the Medical World One evening in 1990, I waited for a news broadcast to appear on television. The program announcer had told his audience that a heart-transplant recipient would be appearing on the program. When the program was underway, the interviewer asked his guest if having a young heart transplanted into his chest made him feel younger. I cannot remember his precise answer, but my own thoughts wandered off in a direction that was new to me. It struck me that it would be worth exploring the cultural background that induced the interviewer to pose the questions that he put to the transplant recipient. I started my investigation, therefore, motivated by curiosity, but without realizing how deeply I would become involved. The more I discovered, the more I wanted to know. I looked for sociological symbols and metaphors for the process of transplantation. This research ultimately led me to attempt to comprehend the concepts of life and death prevalent in our society. I planned to begin my fieldwork at the end of the Gulf War in 1991. However, Israeli hospitals were still on a wartime basis and were rarely performing transplants. At first this hindered my research; but when things settled down, I approached three medical centers in the Tel Aviv area to request help with the fieldwork that I had in mind and got affirmative answers. Eventually one, Marpeh Medical Center, opened its doors to me. The first year of my fieldwork was largely devoted to visiting hospitals, where I met department heads, transplant coordinators, and social workers. I found it very exhausting and frustrating to overcome formalities and secure the cooperation of the medical and other staff involved in

2 Organ Donation and Transplantation transplantation. The positive aspect of this, however, was that it helped me to become better acquainted with the professional practices of the medical staff concerned and their characters. It also made me realize that social research in this field would be valuable only if the system itself could derive some benefit from it. On its own, the accumulated data were likely to attract little interest, if any. I gradually got to know which people held key positions in transplantation in Israel's main medical centers. Israel is a small country, the number of these individuals is small, and most of them were easily accessible, for their geographic distribution was limited. There were many obstacles and difficulties to overcome. In one leading medical center, the head of the transplant department agreed to see me. However, although he recognized the practical aspects of my work, I was not given permission to interview either patients or doctors. Fortunately, a social worker at that hospital came to my assistance; she provided me with information I needed to contact candidates for transplants and families of donors. This social worker was virtually the only member of the hospital staff who showed any readiness to support my study; she helped me identify the interviewees on whose cooperation I have relied. Eventually, I approached Marpeh Medical Center, where my research secured the blessing of the general director, the heads of the departments concerned, and the legal department. This was conditional on my observing the strictest secrecy with respect to the identities of any persons involved in transplants whom I interviewed. Marpeh Medical Center requested that I produce a letter from my university confirming the theme and purpose of my research. I had to address and submit it to each member of the hospital staff whose assistance I desired. At one stage of my study, the hospital authorities demanded that I obtain the approval of the Helsinki Committee, although I did not intend to base my research on human experiments. I mention these difficulties to indicate how determined and meticulous the hospitals were to protect the privacy and rights of their patients. However, I had the feeling that the medical staffs were trying to limit possible intrusions of my research into the domain of what are to them "their patients." In compliance with this understanding, I have not revealed anywhere in this book the names or other details that would make it possible to identify individuals. All names used are fictitious. Once all the team members at the Marpeh Medical Center accepted my fieldwork with the transplants, I began to visit this center regularly. During the years 1992-1993, I visited this hospital every Monday and whenever examinations of interest to my study were held. The Marpeh Medical Center is situated in the heart of Israel and serves a varied population, both Jewish and Arab.


3

My observations began the moment I went through the gates of Marpeh Medical Center. I did the rounds with the coordinator of transplants, who introduced me to transplant candidates, patients who had had transplants, the families of both groups, and doctors and other members of the medical teams. I sat in waiting rooms and listened patiently to the conversation of patients, chatting with them and their families. I also sat in doctors' consulting rooms and observed their relations with candidates for transplants and with patients who had undergone transplants. I was present at meetings between these people and their families, nurses, and social workers. The transplant coordinator was a woman in her thirties, a social worker who specialized in this subject. She was very helpful and cooperative, and I established very good relations with her. She informed me of the policies of the hospital and the Ministry of Health regarding transplantation. I accompanied her on her rounds for hours. I was present when she interviewed candidates for transplants and evaluated their suitability. I sat with her when people came to tell her their troubles, and I joined her during her meetings with doctors in the clinic and in candidate interviews. I ran after her through the long, winding corridors of the hospital when she brought material for tests to the laboratories or went to these laboratories to collect results. At first, she suggested that I wear a white coat and pass myself off as a member of the medical team. I thought this might identify me too closely with the medical team in the eyes of patients, candidates, and their families; I was also afraid that it might influence my attitudes and negatively influence my relations with interviewees. Therefore, we agreed that she should introduce me truthfully as a person doing research on the social aspects of transplantation. Somewhat to my surprise, everybody accepted this explanation and took no further interest in my background. There are always many strangers roaming about in hospitals—trainees, visiting specialists, researchers engaged in other disciplines, volunteers, and patients' families and friends. Therefore, hospital workers and patients take the presence of such strangers for granted until they do or say something that sets them apart from the crowd. In my case, it was only when I tried to establish more personal ties that I aroused the curiosity of people I met. Sometimes when I questioned doctors, they were interested in what I was doing. Most of them were satisfied with the explanation that I was doing anthropological research. They assumed I was dealing with relations between ethnic communities or social status and health and were not interested in the actual purpose of my study. As time went on, I found that I was becoming increasingly dependent on the coordinator. She decided which patients and families I could

4

Organ Donation and Transplantation

interview and which were out of bounds for me. In many ways, she became what anthropologists are accustomed to calling "a key informant." Our relations were very friendly but also not devoid of suspicion. When I first urged her to allow me to meet patients or families, her reaction was, "Your only interest is to be able to advance your career." However, I managed to placate her and we became very close. I began to understand the nature of her work so well that when she wanted to take leave to further her studies, she suggested that I replace her. Of course, I could not agree to do so. When I realized how much I depended on her, I commenced visiting other departments alone and establishing relations with people without her help. This included home visits with transplant candidates and people who had had transplants. I also began to talk to people freely in the corridors of the hospitals instead of waiting for set appointments. These developments increased my feeling of independence. As my study advanced, I became involved in a number of transplantationrelated events that were organized by the hospital and other organizations. While participating in these events, I forged very firm links with many different people who shared their opinions with me and told me their personal histories. In the main, the staff accepted my presence, but I was never invited to participate in the medical teams' discussions, even though the department heads had originally said that I could do so. I also never managed to be present at their meetings with potential donor families. The coordinator and other key members of the medical teams persisted in their determination to guard the anonymity of donors. Sudnow (1967:11) reveals that he was present once when doctors announced the death of a patient to the family. He reports that relatives of the deceased treated him as though he were one of the medical team that had looked after the deceased, because he was wearing a white coat. He was thus able to observe the relations between the doctor and the family and to collect much instructive material. However, ethical questions arose as to whether he had violated the basic rights of the individual (in this connection, see Hazan 1992; Jorgensen 1971; Barnes 1963). The hospitals were very strict about protecting the anonymity of donating families. They refused to help me arrange interviews with these families. They even turned down my suggestion that they ask the families whether they were prepared to be interviewed and that they enable the families to decide for themselves (see also Sharp's [2001] report on the policy of the American National Donor Family Council). Their refusal aroused my curiosity, and I wanted to find out why the hospital guarded their anonymity. I began to contact families directly with the aid of friends or on the basis of information gleaned from newspapers.

Journey into the Medical World 5 At a certain stage in my research, the coordinator with whom I had built up such a strong relationship was transferred from the department. However, this did not affect my position in any way. Her replacement accepted me as part of her "inheritance" and permitted me to accompany her on her rounds. Then something happened for which I had waited two long years. I was allowed to watch a transplant operation. I had been invited to do so twice before, but the operations had been canceled when it became evident that the organs were not suitable. On one of these occasions, the wife of the candidate said to me, "You are probably disappointed, but for us it is a relief. You know, there is only a 50 percent success rate." When I received my third invitation to see an operation, I was very excited. I had waited for this for two years; in a way, the delay was fortunate because I had acquired far more understanding of organ transplantation. The proceedings started when a telephone call to Marpeh Medical Center from another hospital announced that a boy had died there and that his family had agreed to donate his organs. Immediately, Marpeh's medical staff began to prepare patients to receive transplants. I felt I was a witness to the exchange itself, to the actual process, models of which are described and explained in books, with figures and arrows. Later, when the organs for transplant arrived by ambulance in a bag, they were rushed to the operating rooms. The "transplant objects," placed in stainless steel bowls, seemed to me to be something from a butcher's shop. Everything was so matter-of-fact, so bereft of glory, and so remote from what would be described dramatically in the media on the following day. I knew that what I saw was not the real exchange. The true exchange, the exchange between life and death, was invisible. Although my presence at the operation that evening was one of the highlights of my research, it was certainly not the only one. I began to interview donor families and people who had had transplants or who were transplant candidates. Generally, these interviews took place in the interviewees' homes, in different parts of the country. Altogether, I interviewed thirty-five people. I came to these interviews with lists of prepared questions, but interviews with the non-professional people involved in transplants went beyond the framework I had planned and wandered off in various directions. As a result, they took much longer than I had expected, but I obtained much more information. These people had a great thirst to share their experiences with me, and the interviews became an inexhaustible fountain of information for me. They usually stated that nobody was concerned with the psychological reactions or the social background of the people involved in

6


transplants. The only concern they had encountered was with the medical aspects of the transplants. Generally, even this interest was primarily in the organ that was transplanted and only secondarily in the person who received it. Since my approach was different from that of other people, the recipients and donors opened their homes and their hearts to me. They talked to me about when a recipient was in poor health, the torment of being unable to function normally, the dread of death, the joy of feeling reborn and having a new existence, and the improved quality of life. Everyone always received me very warmly. The need of the interviewees to talk about their experiences and feelings was conspicuous. When I left them, I felt that they still needed to go on talking, even after hours of conversation. However, the picture was not always rosy, particularly when recipients of hearts painted it. They described how difficult they found the return to ordinary routines of family and social life. Some of them suffered from a variety of side effects from the drugs they had to take to inhibit rejection of the transplants; others lived in constant fear of such a rejection. Nevertheless, there was a glimmer of hope in all these interviews. Sometimes I was asked how I was reacting personally to the demanding nature of the research I had undertaken; my answer was that transplantation was an optimistic story, an action that provided the opportunity for new life. I developed a strong sense of commitment to the interviewees, drawn from their readiness to respond to all my questions. I wanted to help them in every way I could. I tried to set up a support group of volunteers for people who had had transplants and for their families, but this effort was unsuccessful because I could not find a budget to run it. Later, with the cooperation of the Tel Aviv University students' association, I initiated an on-campus information day on transplants, which was a great success. My interviews with candidates for transplants and with families who had donated the organs of their beloved ones were very difficult for me emotionally; they took place in the shadow of death. I felt such a deep empathy with the interviewees that for a long time, I could not bear to go back to listen to the interviews on tape. The most emotionally demanding interviews were with parents who had decided to donate the organs of beloved children, and these usually lasted several hours. Each interview lasted about three hours and was made of two parts. During the first part, I used a tape recorder and posed a large number of prepared questions. Then I switched off the recorder, and we began to talk at random about the deceased. I was taken through the house to see the room of the deceased and his or her personal belongings. We then sat in the lounge, and the family showed me photograph albums. They talked on and on about the child they had lost. There


7

seemed to be a tacit exchange agreement between us. They would tell me about their motives for agreeing to the donation, and I would also listen to the whole history of the child's life, which they were anxious to narrate over and over again. I felt they were receiving some consolation by revealing to me what would otherwise remain hidden in their hearts. My fieldwork did not come to a sudden end. In fact, I have not really ended it yet. Eventually my visits to the Marpeh Medical Center slowly reduced in number, as did the number of people I interviewed. I gradually evolved a sense of exclusivity in this field and even a feeling of ownership. Colleagues, members of my family, and acquaintances still contact me whenever they see or hear a report or discussion about transplants in the media. After being immersed in the subject for three years, I feel that for many years to come I shall continue to be very interested in any information about organ transplantation. The study is based on the methodological approach of the "social worlds." 1 This theoretical framework has suited many researchers who seek to describe groups of people who do not represent regular social associations but have come together because of a particular but transitory reason (see Strauss 1978b, 1982; Denzin 1978; Kling and Gerson 1978; Weiner 1981; Unruh 1983; Becker 1982). Unruh contends (1983:13-14) that these dynamic social worlds enable individuals to come together in order to achieve a common purpose, or to devote themselves to joint interests. Thus, they form a social connection typical of modern urban societies. They assemble for events of common significance, and they unite in taking action to achieve a particular objective important to all of them. In this way, they create social bonds that are outside the bounds of geographical neighborhood, ethnic origin, religion, or nation. For Hazan (1990:12-16), the social world exists in its own right, independent of the individuals constituting it. According to him, for the individuals concerned it is like being part of a kaleidoscopic picture that is formed temporarily by various components, which meet and later separate and form other pictures. Organ transplantations are performed today in almost all the medical centers in Israel. The people involved in such events are not concentrated in one physical environment but are found everywhere in the country. Hence, it was clear to me that the population in question was linked

*A "social world" is a theoretical form of social organization that has very broad limits, and people within it have a joint outlook that derives from shared channels of communication. It is amorphous and dynamic. Many social worlds are found in modern societies; they are the result of many encounters, different functions, and social relations (Unruh 1983:14).

8


together only by virtue of being engaged in a common activity. Moreover, the transplant of an organ is not an action taking place within borders defined by a specific social act, nor is it a phenomenon that occurs because the individuals participating in it have certain mutual rights and obligations, within a common group. For these reasons, I decided that the "social world" type of methodological approach would be the most suitable for my research. As Hazan puts it (1990:172), the common field of activity results in the coming into existence of a group that has impermanent social connections and contacts without enduring commitments of any sort. On this basis, I drew up a piece of work based on the different points of view of participants in the transplants, the kind of study Hazan calls an "anthropological register" (Hazan 1992:32). My study concentrated both on the different groups involved and on the events that took place in the course of transplantations. The theoretical framework of such research is very broad and requires a specific focus. Guided by the bounds set by the subject itself and by the knowledge I acquired in the field, I defined two main subjects of interest. One was the exchange system between the people engaged in the transplant. The other was the socio-cultural milieu of the donor and recipient. Although the fact that such an exchange system existed became apparent soon after I commenced my research, I was able to comprehend its nature completely only after doing a considerable amount of work. It was apparent that it was essential to focus on the system of relations between those involved. Hence, I concentrated my investigations on the relations between the direct participants in the transplant operation; and I excluded other relations, such as those between the organ recipients and their friends and families. Nevertheless, realizing that the participants in a transplantation do not function in a vacuum, I also gathered material about the socio-cultural milieus of the donor and the recipient. When I realized that in reality my study dealt with the subjects of life and death and the possibility of an exchange between these two states, I resolved to narrow my attention. I ignored transplants from the living to the living, like that of a kidney taken from a person who could go on living with only one kidney, and concentrated on transplants of organs from the dead to the living. I addressed myself, therefore, to the subject of heart, liver, lung, pancreas, and kidney transplants taken from cadavers, and on the groups involved in such operations. During the course of my research, I learned that it was possible to transplant part of a liver or the lobe of a lung and that either of them could be taken from a living person. Such operations were not performed in Israel while I was doing my fieldwork; they have been performed more recently. I placed two further restrictions on myself. The first was to deal only with adult groups who had defined their socio-cultural ideas; the second was to deal only with the Jewish population of Israel, because of the


9

need to define the socio-cultural milieu. The Muslim population of Israel is prepared to donate organs principally from the living for the sake of their relatives. Their willingness to donate cadaveric organs is much smaller. This readiness or refusal finds backing in Islamic law (for further discussion on the motivation of Muslim people in Israeli society, see Brawer Ben-David and Abu-Rabia 2002) and is thus connected to another socio-cultural milieu. This study concentrates, therefore, on the theoretical and methodological aspects of the exchange relations between life and death that are involved in transplants of organs in the socio-cultural context of Israeli Jewish society.


Chapter 2


Three groups of players participate in the act of transplantation: organtransplant candidates, who become recipients through the process; donor families; and medical teams. Each of them is distinctly different from a social point of view. The players in them have different interests motivating them to become part of the process. They come from different perceptual backgrounds and interests, but they meet because the encounter is necessary for all three. Within these groups, reciprocal relations form between the doctors and recipients, between the doctors and the donor families, and occasionally between the recipients and the donor families. The exchange system is between the two partners, one donating and one receiving, with the medical staff mediating between them. The reciprocal relations never involve three parties. This chapter takes a close look into the conduct of these players, their social roles, and their relations with each other. THE MEDICAL TEAM This study examines a team that includes different kinds of medical personnel. These include medical heads of organ-transplantation departments in hospitals, surgeons who perform organ transplantations, doctors who treat candidates for organ transplantations, and those who treat the patients after the organ transplantation. In addition, there are the nurses who deal with candidates for organ transplants, nurses who treat them postoperatively, and organ transplantation coordinators (generally either nurses or social workers).

12


The doctors both determine whom to accept as candidates and also provide follow-up treatment after the operations. The nurses serve as mediators between the doctors and the patients and are the first to liaise directly with the patients. Some studies stress the great importance of the nurses in the identification of potential donors. Others examine the emotional problems arising from conflicting loyalties that the nurses have to cope with when they deal with potential donors and their families. On the one hand, they feel committed to the donors whom they are trying to restore to good health despite their critical condition. On the other hand, they are also obliged to consider the possibility of a patient's imminent death, which by him or her providing an organ for transplantation would enable another patient to live (see Prottas and Batten 1988; Youngner et al. 1989; Fox and Swazey 1992; Sque and Payne 1994). The medical team includes organ transplantation coordinators, who are by profession either nurses or social workers. Their task is to serve as a link between the organ-transplantation department and other departments in the hospital where the candidate for organ transplantation is a patient. This person may also have to coordinate with another hospital where there may be a potential donor. Once a donor is found, the coordinator makes all the necessary arrangements to effect the organ-transplantation arrangements among the donor's family, the candidate, and the organ-transplantation team. Coordinators often make the first request to the bereaved families to donate the deceased's organs. Prottas (1985) stresses the great importance of this task and credits the coordinators with the rise in the number of positive responses from families to appeals for the donation of organs. Although the medical team as a whole cooperates in appealing for organs and in their transplantation, the doctors always get the credit for the operation. The social role of the doctor is discussed fully in sociological and anthropological literature (e.g., Parsons 1951, 1975; Kosa 1970; Freidson 1970; Zola 1972). From the social aspect, the doctor has the legitimate role of identifying the potential patient's illness. This enables the patient to refrain from social actions and obligations and indicates to others how to treat the patient. Sociologists maintain that modern Western society has undergone a process of medicalization. As a result of this process, doctors not only define illness but also decide who may drive vehicles, who may serve in the army, who should be hospitalized in mental hospitals, and who should be hospitalized in general hospitals. People become patients for various reasons and during different periods in their lives, even if they do not wish to do so. A baby, even before birth, may become a patient. Adults considered at risk for health reasons and people of advanced age are regarded primarily as patients (Zola 1972:498; Illich 1976:85-100).


13

The process of medicalization has emphasized more than ever the social role of the doctors and has made them responsible for identifying illnesses and treating those suffering from them. Society recognizes the fact that doctors have special knowledge of the body, and it entrusts them with the exclusive responsibility for defining health and illness and for treating the sick (Freidson 1970:5). The fact that doctors are considered to have a monopoly of knowledge about everything relating to health and illness gives them a unique status as members of an elite profession. Freidson (1970:42) indicates that a profession is a social symbol of status and that medicine, more than any other occupation, is regarded as a very prestigious profession in society. While examining the social role of the doctors who perform organ transplantation, it became clear to me that organ transplantation emphasized their social role as both holders of a monopoly of knowledge about the body in health and sickness and as identifiers of illness. With regard to organ transplantation, however, doctors fulfill two additional, unique, and important functions. They are responsible for determining the moment of death, and they serve as the intermediary between the parties to the organ-transplantation process. By fulfilling these two tasks, the doctor makes possible the exchange that occurs when the organ transplantation is effected; his ability to carry out these tasks gives the doctor great social power (see the discussion by Foucault [1973] on the connection between knowledge and power in medicine). In the course of my field research, I have observed doctors under varying conditions and have noted how they change their functions in accordance with the circumstances in which they are working. According to the occasion, they can appear in the role of scientist, in the role of healer, or in the role of mediator between the parties to the transplantation process. Because of these different social functions, it becomes necessary to differentiate between the doctor as the healer and the doctor as the definer of death. This distinction is particularly important for members of the medical team who find it difficult to cope with their double function. Comprehension of this distinction is also very important for understanding the social quality of organ transplantation, because a conflict of interest may arise if the same group of people is responsible for determining the moment of the patient's death, harvesting the donor's organs, and transplanting those organs. This conflict concerns responsibility for giving full medical care to those about to die and ensuring that no one is in a position to establish death prematurely. A transplant coordinator repeated a conversation to me that she had had with another coordinator who asked her how she reconciled asking for organs on one hand with treating recipients of organ transplants on the other. She answered that she saw these things as two sides of the same coin. However, in most hospitals, members of medical teams think

14


otherwise about the dilemma. Another transplant coordinator once said to me, "We have to distinguish between the tasks of serving as coordinator and of treating recipients of organ transplants because it is impossible to do both at the same time. If you are negotiating a possible organ donation, you must go into the relevant departments to make sure that the medical teams attending to a potential recipient are fully informed of what is involved. Dealing with the body of a donor is very difficult. It is lain out in the recovery ward adjacent to the operating theater. It is all-important that the vitality of the organs be preserved. Then, although everyone concerned knows that the families of the deceased are in a state of frantic despair and need emotional support, members of the medical team must make contact with them in order to persuade them to agree to the donation. This requires that the nurse concerned display considerable psychological insight, apart from her normal skills as the person attending to the physical needs of patients. Concurrently, the physical and psychological needs of potential recipients and their families are very great, t o o . " On a purely technical level, a great deal of time has to be devoted to such functions that are occasionally in conflict. In most hospitals, the tasks are divided among several people because of these problems. The Doctor as Scientist Both in sociological literature and in reality, the action of transplanting organs is regarded as proof of the scientific and technological progress of medicine (see, for example, Fox and Swazey 1992; Shilling 1993; Robbins 1996; Kristiansen 1985; Murrell 1987). It is possible to claim, in theory, that organ transplantation becomes necessary only because of a medical failure, no other way having been found to cure certain serious illnesses. Nevertheless, in practice organ transplantation is hailed as a triumph of medical science. When interviewed by the media, doctors explain how the miraculous operation is performed and describe which patients are aided by it and the problems that may arise postoperatively. Illich (1976:254) points out that medicine only exists on the edge of the frontier of science, although it presents itself to the world as a science, because it needs to use scientific methods to carry out its experiments. At study groups and conferences organized by hospitals or other bodies in which I participated, doctors always appeared in the role of scientists. Equipped with a projector and a lecturer's pointer, the doctors presented statistics, graphs, pictures, and other data to explain the process of organ transplantation, in the traditional manner of all scientists at conferences. They usually outlined the medical reasons that made it necessary to provide the recipient with a transplanted organ. They also described how the severity of the potential donor's condition made it

Partners for a Common Destiny 15 impossible to keep him or her alive. Generally, a lecturer would present a living patient who had had an organ transplantation and was willing to tell the audience how happy he was because of the new life that medical science gave him. I was fascinated by an example of doctors appearing as scientists that I observed at a conference at Shoresh, a resort hotel outside Jerusalem. The organizers explained that their aim was to bring together doctors, recipients of heart transplants, and the recipients' families to discuss problems that had arisen after the operation. The intention was that the get-together would also enable doctors to give valuable new information to the participants. In practice, the doctors of the medical teams gave scientific lectures that most of the people in the audience did not understand. Only a small part of the event was dedicated to the problems of the organ-transplant recipients themselves and presented in a manner that they could comprehend. The conference was opened by an organ-transplantation surgeon with a film of an operation that he accompanied with detailed explanations while pointing at each scene. "Here you see the heart. Here we are examining the heart to ensure that no defects have developed or appeared since its examination at the hospital where it was harvested from the donor. Here we see a diagram of the back of the heart. Here we see the right and left sides of the heart. Now the surgeon will prepare a diagonal opening in the right atrium, followed by one in the left atrium, through which he will make the joint. Sewing the heart up has to be extremely precise to ensure that the dorsal side of the heart will not bleed at the end of the procedure. I must tell you that we are extremely proud at our hospital of the fact that, in all the transplants that we have done, no patient has ever required what we call a revision, that is, a return to surgery because of bleeding. This is because of the meticulous care that is taken." He concluded his lecture by reporting, "At the beginning of the eighties a major discovery, the new drug called cyclosporine, enabled us to prevent rejection by administering it with other drugs called steroids. These drugs changed the whole character of organ transplantation. It ceased to be an experimental procedure and became a routine operation in which successful results could be expected with a high degree of probability. The recipients of organs in the audience are living proof of the progress that has been made." Then other doctors gave lectures. They used medical jargon and transparencies; graphs; and pictures that included shots of cadavers, organs, cells, and their contents. Like the opening lecturer, the doctors repeatedly assured the organ-transplant recipients in the audience that they were living proof of the achievements of medical science. One lecturer dealt with the danger of transplant organ rejection. "The primary issue after

16


transplantation," he warned, "is the need for constant follow-up. Followup to ensure that there is no rejection, to ensure that there is no infection, and to ensure that there are no problems in the coronary arteries. In my lecture, we are going to concentrate on these matters until we feel sure that you understand them fully. It will not be so difficult. I have brought a series of slides to show you." He started to insert slides into his projector. "Every human being consists of a series of cells," he said, after showing the first slide. "Think of this room as one cell, perhaps a skin or a heart cell, and that we have the key to its contents. Here you see a protein, a compound found in every human cell membrane. This protein is called an antigen. Each individual body produces unique antigens, which it identifies and which defend it against invasion by bacteria, for instance. However, they also do something we don't want; they 'protect' the body against the transplant of an organ taken from somebody else. The things that I am showing you differ in the bodies of all human beings and distinguish among them. Every person is unique. With this bodily protection against invasion, we also get the problem of organ-transplant rejection. Only in the case of an organ from an identical twin can we hope to obtain a perfect transplant." After this lecture, another lecture was given on medical ways of coping with the possible rejection of transplanted organs. The lecturer said, "The professor who spoke before me outlined the whole of the immunological mechanism in detail for you. If you bring an organ from outside the immune system into the body, the body won't welcome it and love it, but will reject it. What are the clinical indications of rejection? The signs are not always clear. We can perform a number of laboratory tests to learn about the rejection. We can perform chest x-rays to see whether there is lung congestion indicating cardiac insufficiency. We can perform an electrocardiogram, which can show non-specific changes, slight changes in the complexes. In some cases, we see changes similar to myocardial infection or blockage. Sometimes the heart is infiltrated by lymphocytes." This lecturer also used a projector and slides to supplement what he was saying. When he projected one picture, he commented, "This is the heart biopsy of a recipient who is present here today." (This is exactly what the doctor said, and he showed a slide of tissue removed from a living body.) "It shows that two years after his heart transplant, his heart is perfectly normal, without infiltration or other problems." Fox and Swazey (1992:34) contend that doctors use scientific terms for the immunization system and stress the scientific difficulty of matching the transplant to the body in order to avoid complaints and possibly even legal actions. Where organs are taken from living donors, the donors also have to be protected. During the course of the conference, the speaker, when referring to colleagues, called them either "Professor" or "Doctor,"


17

often adding a description of their position in the hospital, for example, "head of the department of X." Speakers referred to each other in laudatory terms. The audience, consisting of medical colleagues, transplant recipients, and recipients' spouses, applauded enthusiastically. Some asked questions that provoked supplementary explanations, but nobody proffered any form of criticism. When I spoke to lay members of the audience during an intermission, one of them said, "I am sure that most members of the audience didn't understand the lectures because they were too scientific. Perhaps tomorrow's lectures will be better, simpler." The wife of one recipient added, "I hope that tomorrow the program will be lighter. The organizers forget that they are talking to laymen. My husband has gotten used to his afternoon siesta. Today he had to miss it. I hope that won't happen tomorrow." On the second day, the pattern was repeated. In the morning, there were two lectures. One dealt with the danger of infectious diseases after transplantation and the second with arteriosclerosis. Again, transparencies, graphs, statistics, and other data were presented. Afterward, questions from the audience were invited. One question was about the possibility of death despite the transplant. Other questions related the difficulty of functioning normally in the family and in society. Some recipients required financial help because they could not return to the work they were doing before they became ill. In general, the doctors could not suggest solutions for these emotional and practical problems. At the end of the conference, one of the senior doctors summed up. "We have learned from you how difficult the tests and the long wait are for you and how you wish you were not so dependent on the hospital. We must find solutions for these problems. I am sure that in the future we'll find more and more good drugs. These should make the follow-up easier. I see on the horizon all kinds of drugs with fewer side effects. I still believe that the operation is a very good one, which brings new life to people who would otherwise die." Another doctor, however, admitted that the operation was not merely a case of simply putting a patient back onto his or her feet. There were many problems, apart from the medical follow-up, that the patient would face after leaving the hospital and trying to reintegrate into the family, work, and society. This professor said, "Inside the hospital we only get a glimpse of these problems. I am sure that patients who have had successful transplants can find somebody to help them with these problems. Everybody needs families and friends. The purpose of this meeting is that we should all learn from each other. You have learned from us all the medical aspects of the problem at all stages of the transplant. We want to thank you for your cooperation. We think that this meeting has been a great success." My own impression was that there was a great gap between the medical personnel and the laypeople. The transplant recipients and their

18


families were disappointed because they had come to the conferences hoping to get answers to the psychological and social problems that were bothering them. However, only two hours of the two days of the first conference were devoted to these matters. Another medical congress that I attended was devoted to liver transplants. The hall was crammed with about a hundred people, most of them members of medical teams engaged in organ transplantation in the hospital where the conference was held. Several professional lectures were given. After they were finished, Sasha, a sixteen-year-old liver recipient, was invited to go up to the platform to the accompaniment of enthusiastic applause. He was a small, thin boy and looked bewildered. My own feeling was that we had finished with the "scientific" part of the meeting and were now getting down to the "artistic" part. One of the senior doctors from the liver department introduced Sasha. "I am sure that most of you here know Sasha. He arrived at the hospital on October 2 1 , 1 9 9 1 , suffering from acute hepatitis B. Within fortyeight hours of admission, he suffered loss of consciousness, and his coagulation factor dropped to close to zero. We decided that his only hope of survival was to have a liver transplant. As a matter of fact, we had not performed any liver transplant operations in the hospital previously. However, there was no alternative, so we went ahead and performed the transplant. One of the reasons we asked him to come here today is to enable members of the team to experience the pleasure of seeing what they achieved. Sasha, please stand up!" Sasha stood up and the audience hailed him with rapturous applause. The doctor said, "I think it is important to ask Sasha how he is coping and how he feels." It was significant that the doctor did not address Sasha directly but used the third person instead; he was addressing the audience and not the boy. Sasha replied, "I am carrying on just as I did before I got so sick. I am studying all the subjects at school that I used to. I am studying everything." The audience responded with sympathetic laughter. The boy was rather like an actor talking from a script. The doctor asked him, " D o you go on trips and hikes with your friends like you used to?" Obviously, the doctor considered going on trips as a complete return to everyday activity, indicating complete recovery. Sasha seemed a little embarrassed and replied, "1 only don't go when I don't feel like it." The audience burst out laughing. The doctor asked, "When you don't want to go, what reason do you give your friends?" Sasha answered, "I just say that I can't." The doctor then asked, "Is there anything you would like to tell us or ask us? Here you have a forum of doctors who are concerned with liver transplants and who are very anxious to know exactly how you feel and what worries you. We want to know all about the problems of patients

Partners for a Common Destiny 19 like you who have had liver transplants. Have your relations with your friends been affected? Do they know that you have had a liver transplant? Do you feel that you suffer from any handicaps?" The questions were asked so rapidly that Sasha was too confused to reply to them at first. He said little and just nodded his head to indicate that everything was all right. Then suddenly he volunteered, "I spoke on the radio once about getting the transplant. On the next day, when I went to school, some of my friends asked me if I had spoken on the radio. When I told them that I had, they said 'What? You had a liver transplant?' I told them that was right but it didn't make any difference to our relationship." The doctor's comment was, "That's great. Thank you very much, Sasha." There was thunderous applause. It would be fair to say that the doctors exploited these conferences to congratulate themselves on their achievements and to compliment each other. It seems to me that the scientific language and mode of presentation used at such conferences not only provide a shield against complaints but also add to the authority and prestige of the doctors in their role as scientists. The patients, for their part, cooperate with the doctors because they are grateful to the medical team for saving their lives and because they depend on the doctors from the time of the transplant until the moment they die. The Doctor as Arbiter of Death Medicine has the very important sociological role of determining death. The determination of death is actually a proclamation that an individual has left the social cycle. Sometimes sociologists stress the function of the doctor in identifying illness, but his/her task as the judge of whether and when an individual is dead has not adequately engaged the attention of the researchers. The definition of when a person is dead acquires extra importance when the transplantation of his organs is involved. Extracting organs from a body is permissible only when legally and socially acceptable medical criteria have been applied to prove that the individual really is dead. Historically, in the Western world the social role of defining death was once performed by religious leaders. Only since societies have undergone the process of medicalization referred to earlier in this chapter has the task has been taken over by doctors. Nevertheless, in Israel profound argument erupted at first between the religious establishment and the medical establishment about the determination of the moment of death, despite the medicalization of its society. The doctors waged a fierce battle to force the rabbis to accept medical criteria for determining the moment of death. The argument developed into a power struggle between the two groups, each of whom wanted to gain acceptance as

20


the sole arbiter of this important matter when the transplantation of organs was involved. Today, in Israel, the doctors have won the argument. Socially and legally, they are considered the sole definers of death, although the rabbis have not entirely given up hope of getting the public to think differently. Furthermore, some doctors are trying to achieve a compromise with the religious establishment in order to gain their cooperation and win over this important social group to support the donation of organs. Medicine has set up criteria that can define death. Medical research has evaluated indications of life signs in different biological systems of the human body—such as the brain stem, cardiac pump, lungs, and pupils—in terms of physical and chemical processes. When these indications drop irreversibly below an agreed level, the body can be declared dead. The medical definition of death is based on the cessation of a collection of biological signs borrowed from the natural sciences. The doctor and the rest of the medical team concern themselves with the body as a biological system and define death based on biological signs. They feel obliged to fight for the life of a person as long as they observe physical signs of his being alive. There are three accepted schools of thought about the criteria for defining death. All of them are based on a series of tests and observed data, the accuracy of which can be tested. The accepted practice in Israel is for doctors to rely on a system developed at Harvard University. This system defines death as a state in which there is no response to external stimulation or internal needs and in which there is no movement of the body, breathing is not selfregulating, there is no automatic response to the stimulation of a nerve, and there is no record of the brain's activity traced by an electroencephalograph. The director-general of the Israeli Ministry of Health has issued directives for establishing brain death based on the regulations systemized by Harvard University. These rules require the medical doctors concerned to use a series of tests that include blood pressure and body temperature measurements, tests of bodily responses to pain stimuli, and the responses of pupils to light. All these tests are compulsory. After an interval of twenty-four hours, the tests must be repeated. Only after all these tests have been performed over the period indicated can a person be defined as dead. Doctors make a distinction between clinical death and brain death, which is death of the brain stem. A person in clinical death is not necessarily in a state of irreversible coma and is considered alive according to medical criteria. The condition defined as death of the brain stem is irreversible from a medical point of view because of the damage caused to the whole of the brain. Both this distinction between the two conditions and the need to have unbiased criteria for determining death of the brain


21

stem are very important for the medical team, since they alone make it socially legitimate to remove organs from a body for transplantation. In a symposium conducted on January 5, 1994, Dr. Dan Aravot, a heart-transplant surgeon at the Beilinson Medical Center, gave a lecture on the process of defining death. "Intelligence is received about a potentially suitable donor in an intensive care unit who has suffered brain death. This may come from any hospital in the country and includes the information that the potential donor's body is being kept alive by artificially stimulated breathing, liquids, and other suitable medications administered to strengthen his heart; and that a group of doctors has determined that the donor has sustained brain death. Members of the examining team that came to this conclusion do not belong to a transplantation team; they are usually neurologists. Such a group applies the twelve precise criteria laid down by Harvard University. They make certain that there are no drugs in the blood of the patient, because drugs can depress the state of consciousness. They wait twenty-four hours and then they repeat the tests. Only after all these careful tests have been performed twice do the doctors inform the family that their loved one is dead." The doctors emphasized repeatedly that those responsible for defining death had no connection whatsoever with the doctors who removed the organs for transplantation. The point of this is to stress the absence of any reciprocal interests between the two medical teams. Nevertheless, allegations are often made that doctors "steal organs" for transplantation and that they are desperate to get hold of them. An article in Maariv newspaper on June 20, 1993, stated, "An unidentified person was found dying in the Soroka Medical Center [in BeerSheba, a town in the south part of Israel]. He was attached to a number of life-support systems. The hospital authorities and the police tried to locate his family, but failed to do so. Nobody complained that there was no member of his family near to him at the time. In the end he was registered as an unknown who was in a terminal state and beyond hope." Dr. Yair Ben-David, deputy director of the hospital, explained, "Whenever an unidentified person is dying and it is impossible to obtain a family member's agreement to harvest the organs after death for transplantation, the law permits the hospital to operate and to extract organs." The article went on to quote an officer from the police station alleging, "They concealed the facts about the man's death from us. An inspector from our traffic department contacted the hospital, but they refused to give him any details. It was really robbery of the man's organs." Another case was reported in Yediot Aharonot newspaper in September 1993. "The doctors had almost harvested the injured man's organs for transplantation when the police stopped them. The police discovered that Yevgeni Guralik had been run over in the middle of the night and had been brought into Sheba Medical Center in a state of clinical death. Had

22


it not been for the police intervention, it is possible that his organs would have been taken prematurely for transplantation." In another article printed March 3, 1994, in the same paper, there was a report stating, "An immigrant from Russia, a notorious drunkard living alone, died on Friday after falling down and injuring his head while drunk. His family was not located and his organs were harvested yesterday without his family knowing what was happening. The doctors hastened to transplant his heart." These journalists express the persistent fear in the community that doctors may define people as dead before they "really are dead" to harvest their organs for other patients who need them. Doctors have both the authority to define death and to fulfill the function of mediating in the transaction of getting organs for transplantation. Hence, suspicions arise about their role. For its part, the medical community is aware that such suspicions are common in the community at large and therefore take every possible opportunity to stress the clear segregation and separation of the three teams who define death, perform the extraction of the organs, and transplant them. The medical definition deals with death in biological terms. Only after death has been established biologically do doctors inform the family that their loved one is dead. However, Hogle (1995) describes the procedure of the procurement of human cadaver organs for transplantation. She explains that the decision of whether or not human cadaver organs are good for transplantation is based not only on standards, techniques, theories, and work practices; but is also constructed by the values, interests, experiences, and knowledge of the medical team. Sometimes doctors will accept both the medical and mediator roles if they are aware of organs particularly suitable for transplantation, but they can find that appealing for the organ's donation is very hard emotionally. As a result, doctors or medical teams who attend dying patients frequently do not perform the actions that would make it possible to use the organs for transplantation; they may even fail to report the availability of a possible donor to potential recipients (Youngner et al. 1985; Prottas and Batten 1988; Matten et al. 1991). The Doctor as Mediator of Organ Transplantations One of a doctor's most important tasks is to mediate the arrangement of organ transplantation. There is a social agreement that it is legitimate for doctors to mediate and bring about the exchange relations involved in organ transplantation (see Bauman's explanations of the role of the expert [1991]). The doctor or team attending the donor family serves not only as the facilitator who makes the transplantation transaction possible, but it also decides who can donate organs and who can receive


23

them. The doctor or team protects the anonymity of the donors as carefully as possible and ensures that the donors and the receivers of transplants are completely isolated from one another. Mediation begins with an appeal to the family. Sometimes the attending doctor makes the appeal; sometimes the coordinator appears on the scene to do so. From the doctors' point of view, making the appeal is not easy. They have to suggest the donation of the organs at the very moment when the family has been badly affected by the announcement of death. Very often, the deceased does not look dead, because the mechanical respirator continues to maintain artificial respiration and circulation. The time to press the case for making the donation of the organs is limited, for to be of any use they have to be extracted from the body very soon after the determination of death. At a conference of transplantation coordinators at Beilinson Medical Center in March 1993, some coordinators described the angry reactions of the families when the subject of donating organs for transplantation was raised. Mediators have to display extraordinary sensitivity and know precisely the arguments that will likely influence the families of the deceased. When transplantation was first introduced in Israel, mediators had no training in how to handle donors. Later, workshops were introduced to give such training to medical teams. The participants in these workshops were given insight into how to handle families when appealing for donations, through role-playing. Generally, the appeal is to altruism—the families are told that the donation will help other people. They are expected to treat the matter as a gift. I gathered that this was the main argument given for donating organs when I discussed the matter with donor families. One donor father described to me how the appeal was made to him: "Almost immediately after the doctor in the intensive care unit told me that it was all over for my son, he added that there was a dying man who could be saved from death if he got Naor's heart. He said, 'Look, when somebody dies, we try to save the life of somebody else by means of an organ transplantation.' It all happened very quickly. He didn't give me time to get advice or even to think about it. Just time to call my wife and tell her what the doctor had said. We agreed on the spot." Another donor mother said, "The heart transplantation team put heavy pressure on us. I don't think that it was at all proper. They told us that they were talking about saving the life of a young man from a neighboring kibbutz. They said that if he didn't receive my daughter's heart from us, he would die within a few days. It was awful. I wouldn't have allowed myself to behave like that at such a moment." The medical team often tries to persuade the family to donate organs by emphasizing the distress of an individual waiting for a transplant.

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They describe in precise detail what would happen to that person if he did not get the transplant. In this way, they create the illusion that the gift of the organ is a personal one. Simmons and his associates (1987:361) explain that the family's agreement to sign the form required to extract organs from the deceased changes the death into something irreversible, for the families. This means that the medical team is sometimes regarded as hostile or lacking feeling and respect for the dead. On the other hand, the deceased's family frequently appreciates the doctors' emotional difficulties. A donor father testified, "The doctor was certainly in a state of fear and trembling about seeing a young man die, and then he had to make his appeal to us to allow him to extract organs from the body for transplantation. I certainly didn't envy him. He was in a far-from-pleasant situation." From the moment that the family agrees to make the donation, the medical team breaks off all contact with the donors, apart from sending a formal letter of thanks. This is because the team is under intense pressure to protect the anonymity of the donor family at all costs. The attitude toward recipients of organ transplants is different. They are expected to appear at conferences and attend study groups, while the donor families are kept out of the limelight. When I wanted to make contact with the donor families, the coordinator rejected my request. "Donors want to remain anonymous, and object to being made into public figures. Many people have rejected requests for organs just because they didn't want to be exposed to publicity and the curiosity of the public." Fox and Swazey (1974, 1992) have compared the mediator's function in an organ-transplantation transaction to that of a gatekeeper controlling admissions and departures. On one hand, the mediator is concerned that the transplant candidate should have the best possible prospect of getting the organ that he needs; on the other hand, he is responsible for ensuring that the donor family's agreement to the donation does not affect them adversely. However, the gatekeeper has the further function of protecting the process itself, so that its repetition will be possible. The medical team guards the anonymity of the donors zealously to ensure that others will follow the donor family's example, leading more organ donations in the future. But in fact the medical body could encourage more donations by stressing the social hero aspect, as I will show later. If donations were not anonymous, then more people would be heroes and role models—hiding donor families might be detrimental to encouraging donations. The medical team selects recipients for organ transplantation from those candidates who have the greatest prospect of coming out of the transplantation operation alive, for this will demonstrate their own success. The candidates must be psychologically stable to be able to cope with


25

the new life that they will receive, and they need families who will give them the essential social support that they will require. The team must be certain that the recipient can take care of the transplanted organ. The team's primary concern is about what will happen to the organ that is to be transferred. A medical coordinator, talking about a recipient in an accusing tone, once said to me, "Here you have a young man who was given a new heart but had a severe myocardial infarction." She was blaming him for his relapse because she thought he had caused it by his conduct. Another doctor explained to me, "A heart transplant is a major investment that society makes, both financially and by the enormous amount of work put into it by highly trained doctors and supporting personnel. One must take care of one's new heart. I am infuriated when I hear of recipients of transplanted hearts smoking, eating the wrong foods, and doing all the wrong things. They have been given a new life, yet they neglect the heart that was donated to them and which makes that new life possible." At a public symposium, Professor Shimon Glick said, "The question to whom an organ should be given is an ethical one. Should it go to the youngest applicant, who has the most years to live; to the sickest applicant, whose need is greatest; or to the applicant who has the best prospects of surviving the surgery and making good use of the gift of life? The tendency, as I see it, is to select the third option." A transplant coordinator stressed in a conversation with me, "We encourage urgent cases to go abroad for transplants because in such cases the possibility of failure is great and no Israeli hospital wants to have a record of failures." In the process of classifying candidates for transplants, the general state of the candidate's health is carefully examined. "One has to be healthy to undergo transplantation," members of medical teams say repeatedly (see also Hogle 1995). Candidates undergo psychosocial and psychiatric evaluations to test their potential compliance with doctors' instructions, that is, the extent to which they will obey the doctors' orders in the future. This is determined by questions about their reliability in taking their medication, eschewing smoking, and observing a balanced diet. Social workers converse with patients to estimate the degree of their ability to understand their current condition, the nature of the operation and the experience they are about to undergo, and how well they will cope with the personal and social problems that they will face in the future. Persons with serious psychiatric illnesses are not good candidates because the medical establishment does not consider them capable of looking after the transplanted organ in the future. I was present during an interview between a doctor and an applicant for a heart transplant. A man of Indian origin, short in stature and with

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graying hair, was brought into the doctor's clinic by a young man who said that he was not a relative of the applicant, only a friend. The doctor looked up from his notes and asked the candidate, " H o w are you, Eliyahu?" The man tried to explain in broken Hebrew that his condition was not good. He passed his hand across his chest and armpit and said, "It hurts! It hurts!" The doctor asked, "Do you take your pills?" The man pointed under his tongue, indicating that he took pills, which he put under his tongue. The doctor asked, "Can you walk?" The candidate replied, "A little. Fifteen minutes at a time. After that I can't breathe." He demonstrated and added, "I can't sleep at night. I have too many dreams." The doctor took him behind a screen and conducted a medical examination there. When this was finished, the doctor washed his hands carefully. Then he sat down at his desk and wrote his decision, while the man gaped at him in silence. The doctor said, "I am going to give you a new medication that may help you more than your present one. Be sure you take it carefully." The doctor turned to the patient's friend. "Look, there has been no change in Eliyahu's condition. He's stable, neither better nor worse. We discussed his case at great length in the department. There aren't many options. His heart is weak, and I doubt whether he can stand more surgery." The friend asked, "What about a heart transplant?" (It seemed to me that this possibility had been discussed before, or the friend would not have raised it.) "We considered that in the department," the doctor replied, "but there are many problems. One is that Eliyahu has a virus in his liver, which we can now treat with drugs. However, if we perform a transplant, we shall have to give him very strong medicines to prevent rejection of the new heart; and these medicines will weaken his protection against the virus in his liver. So I don't think we can consider a transplant at this stage. Perhaps later." "But Eliyahu is suffering all the time now, every day," his friend protested. "Perhaps you should take a chance and do the transplant?" However, the doctor was adamant. He repeated his arguments against considering a transplant immediately and strengthened them by quoting the Latin name of the virus that was infecting Eliyahu's liver. He avoided personal responsibility for the decision by using the plural pronoun: "We decided. We had a meeting of the whole transplant team about it." The friend asked, "So what will happen to Eliyahu?" The doctor answered, "We'll watch him very carefully. He must come back to the clinic in three months for a complete checkup."


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After Eliyahu and his friend left, the doctor turned to me and said, "It is a very difficult problem. It is apparent, isn't it, that poor Eliyahu has a very low IQ and does not understand what is going on. But anybody who has a transplant operation must appreciate the significance of the process very well so that later on he will know how to look after himself and his new heart and will contact us immediately if something goes wrong." Later the same day, after he had finished all his examinations in the clinic, I ventured to ask this doctor, "Didn't you feel as if you were passing a death sentence on Eliyahu? What do you think about when you have to pass judgment in this way?" The doctor said, "I feel very bad. But there's not really anything I can do to spare him or myself. I can't tell him the full truth. I can't say bluntly that he hasn't a great chance of living much longer. He's in great danger of sudden death at any moment for a number of reasons. I try to mitigate the truth as much as possible, but it is very hard to tell him such a thing. It was very difficult for me to reject him from consideration for a transplant. So, I brought the matter up before the whole team, as I told him. We discussed it for a long time and went deep into the problem. It helps me that the whole department makes the decision and not I, alone. To our great sorrow, we cannot give transplants to everyone who might gain from them. There are some things we simply cannot do, however much we would like to." He spoke very sincerely, but cynics listening to him might have wondered whether he was also thinking a little of the prestige of the department. A wrong decision might have meant a failure, which would have damaged the department's reputation. In all cases, whether the patient is accepted as a candidate for a transplant or not, he is handled by the medical team with great consideration. He is treated with medications, some of them new, and his condition is regularly checked by a number of tests. The coordinator stays in touch with him and is available for him to discuss any problems that may be worrying him. The Doctor as Healer Sociological literature deals at length with the relations between doctors and the people they treat. Sociologists suggest different models for presenting this system of relations, indicating their conviction that these relations are comprehended in the social sense and are universal. Thus, one model offered describes these relations as constant, based on the social role that each side performs in the situation (Parsons 1951). Another model describes the relations between doctor and patient as dynamic and changeable in accordance with the nature of the illness, the understanding of the doctor, and the condition of the patient (Szasz and

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Hollender 1956). Another system of relations is described as negotiations between two factors (Strauss 1978a), or as based on the power emanating from the doctor's greater knowledge (Foucault 1980). The great variety of models emphasizes the complexity of the relations. Many models concentrate on the relations between doctor and patient, ignoring the influence of other doctors, other members of the medical team, the management of the hospital, and members of the patient's family. During the many occasions that I observed the system of relations between doctors and patients, I found that the system changed according to two factors: the extent to which the relations were continuous and the progress reached by the exchange process that was the source of these relations. During the period of the patient's candidacy for a transplant, the doctor's function differs from what it will be after the operation. During the candidacy, the doctor diagnoses the patient's medical problems and decides whether the patient is eligible to participate in an organ transplantation. After the operation, the doctor determines whether the transplant has been accepted or rejected by the body, diagnoses the state of the patient's health, and provides follow-up treatment. In the course of my fieldwork, I observed that doctors held distinctly different attitudes toward candidates for transplants than they held toward patients who had received transplants. The candidate is completely dependent. I observed this in the case of Motti. Motti, fifty-six, formerly owned and ran a business but gave up working because of his illness. His wife accompanied him when he came into the room where the doctor was seeing patients. She was neatly dressed and wearing jewelry. Apart from the doctor and myself, there were several other people in the room, including another doctor specializing in this field and a social worker specializing in both transplant coordination and treating people after they received transplants. Nobody asked the couple whether they agreed to my presence, and nobody bothered to introduce me. The doctor read Motti's file, but he eventually raised his eyes for a moment and asked Motti, " H o w are you?" This standard question generally indicates welcome and a feeling of friendliness, but in this particular case the inquiry aimed at getting information about the state of Motti's health. Motti answered, "There has been no change since you last saw me." The doctor then asked, "Can you go for walks?" Motti replied, "It's possible." The doctor asked, " H o w far?" Motti said, "In flat areas, about a kilometer, but I can't walk uphill." I got the impression from this exchange that Motti's ability to make the physical effort of going for a walk gave the doctor clues about how well his heart functioned and also indicated how he functioned socially.


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The doctor then asked, "Do you feel that there has been any change in your ability to go for a walk?" to which Motti replied, "No." His wife then asked, "May I say something?" She continued speaking without waiting for an answer. "I feel he is gaining weight. Maybe he doesn't realize it, but I, his wife, see it." The doctor invited Motti to go behind a screen for a physical examination. After the examination, the doctor washed his hands. Presumably, he did so to guarantee sterility, but I got the impression that he was symbolically washing his hands of the patient because in fact the physical examination was the only time that they came into actual contact with each other in that encounter. During the physical examination, the wife whispered to the coordinator that Motti suffered in silence and did not share his distress with her. She said that she was worried all the time; and every evening before she went to bed, she left clothing ready to put on in haste in case there was an emergency in the middle of the night. The coordinator said, "But Motti is a big boy now." The wife answered, "The responsibility is mine, and if anything should happen to him—" The coordinator said, "He is an adult, and there are some decisions that adults must make for themselves—it is their privilege to make them." A covert struggle was taking place between the two women for control over Motti. In theory, the system of relations at this juncture is between the patient and his medical team, but his wife plays a critical part in the decision-making process. At the end of the examination, Motti dressed and came back to his seat opposite the doctor's desk. His wife sat down next to him. The doctor sat down, opened the file, and said, "Look, as I see it, your condition is good." Motti answered, "But I don't feel well, doctor. I have angina pains in my chest." Motti repeated this several times, clearly using the word angina as a professional term, addressing the doctor as if they were equals discussing his condition. The doctor said, "Perhaps we should try raising the dosage of your medicine." A discussion ensued between Motti and the doctor about the percentage that his heart was functioning, with the doctor giving a higher figure than Motti gave. Strauss (1978a) explains that in the system of relations between the patient and the doctor, the patient seeks, through negotiation, increasing satisfaction from the relations. This may take the form of new medicines, attention that is more personal, or a new form of treatment (most of the patients aim at getting the doctor to prescribe a heart transplant). Eventually the doctor said, "Although it is possible that we may improve your quality of life with different medication, I think, from the

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point of view of how you feel about it, that you are a suitable candidate for a heart transplant. Do you and your family belong to a sick fund linked to the hospital?" A shadow of a smile crossed Motti's face; he had received the answer that he wanted. The doctor went on. "Now we want to see you more often. At least once every fortnight. If we see that your condition doesn't improve, we may send you abroad for surgery. If we put you on the list of candidates waiting for transplants here, I'll try to see that you are high on the list. How old are you?" "Fifty-six." The doctor noted, "Good. There is every chance that you will come through transplant surgery successfully. Okay? Now all that we have to do is to test your blood type. You may have to undergo eatheterization." The coordinator interposed to explain when and how Motti would undergo the tests. Motti and his wife left. After they had gone, the coordinator commented, "Women like that exert a great deal of pressure on their husbands and don't let them lead normal lives." Then she turned to me and said, "You'll have to wait outside now. We are going to deal with patients who have had transplants and who come for follow-up treatment every three months. They are entitled to privacy." The people who want to be candidates for transplants are in the midst of negotiations that will decide their futures, for better or for worse. The people who have already had transplants are in a different position; if the operations have succeeded, their cooperation has enabled the doctors to add to their own social esteem. Because of this, relations are more cordial between these patients and the doctor than between the transplantation applicants and the doctor; there is mutual dependence. In exchange for permitting the doctor to insert an organ into his body, the patient has earned a preferred position in the clinic, entitling him to protect his privacy and to enjoy other privileges. For example, on one clinic day a patient who had had an organ transplant arrived and asked before he had finished the series of tests he was undergoing if he could see the doctor. Normally the nurse would not allow this, but since he was a long-time patient who had had an organ transplantation, she agreed. Jonathan's wife confirmed that her husband, a veteran, received special treatment after his heart transplant. "Today," she told me, "I feel freer to contact them about any problem that we experience. They believe now that they can learn from us; the benefits are mutual. In the past, we felt that we were dependent; now there is a feeling of equality. You know the saying: 'The cow wants to suckle more than the calf.'" From all appearances, relations between patients and the medical team become more egalitarian after the operation. The recipients of organ


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transplantations have acquired new lives, but they also serve as living testimony to the doctors' skill; and the doctors have thereby acquired greater social prestige. A doctor feels that he is entitled to dominate the person he has saved from death; the recipient feels he is entitled to have personal relations with the doctor. They have great faith in each other. The following two examples illustrate the new system of relations that come about, and what the two sides expect from it. Asher, about thirty, had a heart transplant in Belgium three years previously. He came into the clinic alone, wearing jeans and a checked shirt. He wore sandals on his feet and a skullcap on his head. He was welcomed enthusiastically by the coordinator. The doctor, the coordinator, and I were in the room. The coordinator introduced me with the comment, "Orit is doing research. Do you mind if she sits in with us?" Asher agreed. The doctor asked, "How are you?" Asher said, "All right." The doctor then asked him, "When did you last have a biopsy?" Asher rolled his eyes, shrugged, and clearly did not know how to answer. The coordinator said, "It was more than a year ago." Asher showed the doctor that he had warts growing on his hands and said, "Look at these. They grow all the time." The doctor examined them carefully. "It is some kind of skin problem. Is it painful? Does it trouble you in any way?" Asher answered, "It doesn't hurt, but it doesn't look good." The doctor replied, "It is the kind of thing you can have for years and that suddenly clears up. What is the treatment?" Asher detailed the drugs that he was taking. The doctor made notes. Then he invited Asher to have a physical examination behind a screen. The doctor examined the warts again, very carefully. He asked whether the condition was worse than it used to be. Asher told him that it was. The doctor continued his examination in silence. They came out from behind the screen, and the doctor washed his hands. He sat at his desk and wrote notes for a long time, apparently without needing anything from Asher, who sat quietly waiting for the doctor's decision. This patient was the chief object of a scientific investigation and treatment thereafter (Kleinman 1988:181). This concern about Asher's warts is unusual. Generally, the doctors are concerned only with how the organ transplant or other parts of the body directly involved in the transplantation are faring. The fact that he evinces interest in the warts is an indication that the doctor's system of relations with Asher is more personal than usual. The relations between a doctor and a person who has had an organ transplant are apparently

32 Organ Donation and Transplantation more egalitarian than with candidates for transplants, although they remain limited. The doctor summed up. "Okay. Come back in two month's time for a biopsy and eatheterization and then we'll see. Maybe we'll reduce your medication." Asher takes leave of the doctor, the coordinator, and me. He leaves the room happier than when he entered it. The rules of the game have been preserved. Asher accepts the doctor's decision and thereby has won a closer personal relationship with him. In another case, that of David, the rules of the game that gave the doctor complete control were not observed. Dissatisfied with the way he was being treated, David permitted himself the self-indulgence of losing his temper and leaving the room, slamming the door as he left. David, in his fifties, had also undergone heart-transplant surgery in Belgium. This was in 1990. He entered the doctor's room somewhat diffidently. David: "May I come in?" Doctor: "Why did you go and do an ECG [electrocardiogram] test? Who told you to do so?" David: "I am here, so—" The doctor interrupted him to say, "You should have asked us first, but come in. It makes no difference." David: "I thought—" The doctor interrupted again. "How long is it since you were last here? I think that it's more than a year!" David: "You didn't call me." The doctor, speaking sarcastically: "Oh? So we didn't call you. So, you have lost interest in your own case. Perhaps you thought that the hospital had burned down, or something like that?" The medical team expects people who have had organ transplants to look after the organs entrusted to them very carefully. They must demonstrate responsibility by taking their prescribed medications exactly as prescribed and by appearing regularly for follow-ups. Doctor: "I have your ECG here. Everything seems to be in order. Did they take blood from you today?" David: "Yes." Doctor: "When did you last have a biopsy?"


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David: "About... about... six months ago." Doctor: "Six months ago? Then you'll have to do another one." The doctor took David behind a screen for a physical examination. During this examination, more intimate relations developed. David complained, "I have severe pains in my legs. I can't walk." Doctor: "Ah. That's because of the legs that you couldn't come." David: "My hands also hurt." However, the doctor was concentrating hard on the examination and did not react. After the examination, the doctor washed his hands and sat down in his seat. He resumed writing his notes. David dressed and sat down opposite the doctor. Eventually, the doctor said, "So you must do the biopsy as soon as possible." David: "My legs are still painful. Can you do something to stop the pain?" Doctor: "It will pass. First do the biopsy and then we'll see." He gave David a referral for a biopsy. David became angry and threw the form down onto the table. He left his chair and started for the door, muttering to himself, "Is this a doctor?" He exited the room, slamming the door behind him. Like many other patients who have had organ transplants, David expected the doctor to adopt a more personal and sympathetic attitude. Instead, the doctor concentrated on the transplanted heart as if it were part of a machine and he were a mechanic. This brought David to break off the emotional interaction with him. It is significant that David permitted himself to indulge in a show of temper; it shows that he had a feeling of equality with the doctor. A candidate for an organ transplant, dependent for his survival on the doctor's kindness, would not have dared to act in the way that David did. Throughout all the services that they provide in the course of organ transplantation, doctors behave rather like overlords. Frank (1991a:50-63) points out that doctors relate to the body of a patient as if it were their territory. People applying for medical treatment recognize that the dominion over their bodies will pass to doctors and they covertly accept, in advance, this kind of exchange relation. Candidates for organ transplants and patients who have had the operations are examples of this subjugation. They accept that their bodies will be completely under the control of their doctors. They cooperate in medical investigations and experiments, and enable the doctors to play different roles in different contexts.

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The relations that the medical team builds up with the participants in the organ transplantation are limited in time and content. Relations with the families, whom they ask to donate organs from the body of the deceased, end the moment they get the consent to the donation or a refusal. The doctors do not build up close relations with prospective donor patients. Frank (1991a:53-54) calls the doctor-patient relations in these cases "strange" because they do not build up intimate relations, although conversations between them revolve around intimate subjects. In order to create close relations, people must spend time together for a significant period to acquire a common history and for the intimacy to be mutual. In spite of the fact that candidates for organ transplants and those who have had them visit the clinic frequently, spend time in the hospital, and stay in touch with the medical department for the rest of their lives, close relations are not established. The explanation for this is that the meetings are only for practical, health-related purposes. Moreover, the medical team is primarily interested in the transplanted organ, the object for which it acted as a mediator in the transaction. CANDIDATES FOR ORGAN TRANSPLANTS A N D PATIENTS AFTER ORGAN TRANSPLANTS The candidates and recipients whom I met during my study were adult Israeli Jews, since my purpose was to investigate cultural and social aspects of the organ-transplantation phenomenon in Israel. Candidates for organ transfers and patients who had received such transfers gladly shared their experiences with me. I had the feeling that every one of those who agreed to be interviewed was eager to relive the experience they had undergone by talking about it with me. Only one person I approached refused to be interviewed. For the most part, I interviewed them in their homes. I always started the interview by asking, " H o w did your medical problems begin?" I found that this question resulted in a narrative outlining the interviewees' illnesses. Kleinman (1988:49) explains that the narration of their illnesses as a story helps the patients to obtain consistency in comprehending their long experience of suffering from an event in which they were involved. The operation, the ideas involved, and the rhetorical framework are constructed into a narrative according to the interviewees' personal and cultural models, with the aim of communicating their experiences to the interviewer in a meaningful way. During the long period when their lives are disorganized by their illnesses, these narratives give some order to their lives by giving structure to the experiences.

Partners for a Common Destiny 35 During the process of organ transplantation, all patients go through three stages in which their status and the attitude of the medical team toward them change. Their first interaction with the medical team is as patients suffering from a serious ailment. Then they become candidates for an organ transplant. Finally, they are patients who have had an organ transplant and now require follow-up treatment. The Change from Patient to Candidate The application to the organ-transplantation department in the hospital is always with the recommendation of the candidate's physician. However, the procedure is protracted, for the hospital does not accept people as candidates until it has subjected them to various medical tests and assessed the state of their health. It wants to be satisfied that all an applicant's bodily systems, apart from the organ to be exchanged, are functioning normally, so that there will not be unnecessary medical complications if a transfer is effected. Even after the hospital is satisfied with the applicant's medical condition, there are two further assessments—psychiatric and social—before acceptance as a candidate for an organ transplant. The hospital's psychiatrists make the psychiatric assessment. A hospital social worker makes the social assessment. She interviews the patient and the patient's husband or wife or other close relatives. Her purpose is to judge their ability to cooperate with the medical team and to fulfill all their instructions. She also tries to test the degree of social support that the patient will receive from relatives and friends after the surgery. The following interview with Dan Zeevi illustrates such an investigation by the social worker. Dan Zeevi, forty-six, came to the hospital accompanied by his wife. The social worker, wearing a white laboratory coat, took them into a room where she sat down at the doctor's desk with the patient's file open in front of her. She said, "We have to examine two things before we can decide if you can be a candidate for a heart transplant. The first is whether you need it. The other is whether you are suitable to receive a heart transplant." Then she fired off a series of questions, one after another, and recorded his answers in the file. After he answered the questions put to him by the social worker, he asked her, "Would you please explain to me in more detail why the hospital needs all this personal information to decide if I am a suitable candidate for a transplant?" The social worker replied, "Look. A transplant is only one form of treatment, and it is not necessarily a suitable treatment for you. It might not be good for you." At the completion of the selection process, the medical team does not inform the patient whether it has based its decision only on medical

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criteria or also on social considerations. Moreover, the patient does not participate in the team's decision-making. Although she was not a doctor, the social worker recorded his medical history, giving him the impression that she was an inseparable part of the medical team. She resumed her interrogation. "Tell me, Dan, how did the problems with your heart begin?" Dan answered, "In January 1989, I had a heart attack. We contacted Magen David Adorn [the Israeli emergency medical society, similar to the Red Cross] and they said, 'Come to our emergency station at once!'" He described in detail the events of that day, how his wife had to carry him to their car, how she managed with difficulty to drive him to the Magen David Adorn station, where they did not give him suitable treatment. It was obvious that he still harbored a grievance against the emergency service. The social worker then asked, "And how do you feel today?" Dan replied, "At times my legs are as cold as ice. My hands turn white, pale, and cold. In this part," he said as he passed his hand across his chest, "it's like dead flesh; and here," he said, pointing to his forehead, "I don't feel anything. I feel, you know, that just to think requires more strength than I have. Sometimes I can't see well and sometimes I can't even speak. I just stammer. Sometimes it is so painful here," he said, pointing again to his chest, "that I am afraid my heart is going to burst right through my skin. But the sicker I am, the worse I am treated. A sick man has to fight the whole world! Sometimes even his own family. Our child drives me mad. He doesn't understand how ill I am. My doctor in the other hospital told me that he thought that a heart transplant would help me." As he was running through this long string of grievances, I received the impression that his distress was more social than medical. The social worker wanted to know whether any doctor from the transplant department had ever said that Dan should have a transplant. Dan did not mention the name of any doctor in the department. She asked him what treatment he had been given and what medications he was receiving and recorded all his answers very carefully. Then he said, although not in reply to any question, "My heart limps along. There is a scar on it from one attack I had. An artery isn't working properly. My heart functions at only 24 percent capacity. There is a 50 percent blockage." His description of his troubles was reminiscent of a motorist describing the damaged parts of his automobile. Clearly, he thought that the doctors could change his heart, the damaged part of his body, as easily as a mechanic changes a malfunctioning part of an automobile. The social worker said to him, "The pain in your chest may be due to insufficient blood reaching your heart. Maybe they should give you a


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balloon." She was suggesting the possible insertion of a balloon into the arteries of his heart to open blockages, thus making it possible for the blood to flow freely to his heart. "The doctor here will decide whether you need a balloon or a transplant. Or he may suggest some other solution." Although she had been talking as if she would be an expert participant in whatever decision the department made about Dan, she had apparently decided to make it clear that the only person who could really decide was the doctor. Dan answered, "I certainly don't want to get rid of my heart. If there is any solution that would allow me to keep it, I would prefer that." I was impressed by the coherent way in which he described his condition, managing to bring in the fact that the doctor in another hospital had told him that he should get a transplant at the social worker's hospital, where there was a transplant department. His aim all the time was to persuade them to give him a transplant. The social worker asked, "Do you smoke?" Dan replied, "No, I've stopped. I must admit that on the eve of the last Jewish holiday, I did indulge myself and I smoked four cigarettes, but afterwards I felt very bad." The social worker said, "Of course you did. You said earlier that sometimes your heart jumps about. When you smoke a cigarette, you inhale cigarette smoke instead of oxygen, which makes things much harder for your lungs and heart. So of course your heart doesn't like it." The social worker told me later, "We automatically reject smokers as candidates. If a person with medical problems insists on smoking, there's no remedy for him. He's had it. Smoking is an act by which a person destroys his body through his own actions, indicating a lack of will to be healthy." Continuing her interview, the social worker asked Dan, "Have you been to a psychologist?" He replied, "They sent me to one at that other hospital. He interviewed me and wrote a recommendation that I needed more heart treatment than I was getting." By his answer, Dan clearly wished to emphasize that there was nothing wrong with his mental health. The social worker's next question was, "How would you describe the mutual relations in your family?" "What can I say?" Dan answered. "If it's permitted to disclose such things, I would tell you that for three years we have had no real married life, if you understand me." Referring apparently to their extended family, he said, "Nor has the family helped. I used to be employed as a mechanic; then I set up my own business. But when the problems with my heart began, I had to stop working entirely. I just can't work." The social worker's next question was, "Who gets your pills for you?" She explained to me later that this question and those that followed concerning his medication were intended to find out the extent to which

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the patient followed his medical instructions and how much family support he got about these instructions. " M y wife," replied Dan. " W h o decides what pills you should take every day, and how many?" asked the social worker. "I do. My sister helps. She is a hospital nurse. She divides the tablets into the correct amounts I should take. She does it better than I can because sometimes my head doesn't work so well." The social worker then said, "Good, Dan. N o w you can go in and the doctor will examine you. We'll talk again later." The social evaluation took place before Dan's medical examination, because the doctor was busy and the social worker happened to be free. The order of the evaluations is never strictly observed. Dan and his wife got up to leave the room. At the door, he turned around and said to me, "This life isn't worth living. It would be better to shoot a nine-millimeter bullet into my head. Society doesn't care what happens to me! Neither does my family!" "Surely you don't believe what you are saying," I answered. "You'd be surprised. I've thought a lot about it," he replied. I concluded that, at the end of the social evaluation, Dan felt that he had not gained the confidence of the social worker and that this was why he made those closing remarks. Later the social worker said to me, "Dan's whole story strikes me as questionable. He says that no one treats him, yet he brings test results. He claims that they sent him to get a transplant, but he hasn't brought a proper referral letter. It seems to me that the other hospital that referred him to us knew whom they were dealing with." The social evaluation, even if it is made by a professional, seems to be based more on the interviewer's impressions than on clear, objective criteria. As stated previously, in addition to the social evaluation, the candidates undergo a psychiatric evaluation. For this they are sent to an interview with the hospital psychiatrist. At a conference on liver transplants in April 1993, a psychiatrist explained how they made the psychiatric evaluation and why this was necessary. He said, "A number of questions require answers. For example, is the candidate sick enough to need a transplant, and are there any psychiatric problems that could adversely affect the medical treatment and the operation? A third issue is whether an existing mental condition could worsen because of the transplant. The problem is how the patient will react after he is subjected to the complicated process of getting a transplant. He will have to be able to look after himself in the very demanding post-operative stage. There is also the question of whether it is worthwhile investing such a considerable amount of time and resources without certainty of a complete cure."

Partners for a Common Destiny 39 The psychiatrist suggested that patients be forbidden alcohol for at least a year before receiving the organ transplant to enable better evaluation of their ability. Another psychiatrist said to me on a different occasion, "Our main aim is to get to know the candidates and their mental condition. I also examine their relations within their family and whether they take their medication regularly. There are almost no situations in which patients will not be permitted to go through transplantation because of mental complications. However, we can predict whether they will cooperate with the medical team and take care of the organ that they have received. If our findings are positive after this, we recommend that the patient is ready for the organ transplantation, from a mental point of view." The psychiatrist does not base his evaluation on objective tests but on his subjective impressions. The psychiatrist's advice is enlisted before the selection is made, although it is primarily the medical evaluation that determines who will or will not be accepted as a transplant recipient. Nevertheless, the medical team explores all avenues to ensure the success of the organ transplantation from every point of view. The candidates for organ transplants may dread the very serious operation, but they regard it as the best possible solution for them, so they are profoundly involved in the evaluations and the resultant decisions. They tend to emphasize the low state of their health and to argue about the seriousness of their illnesses. The section on the doctor as healer describes such medical evaluations. In it, the report of the doctor's discussion with Motti, during which Motti debated the percentage of his heart malfunction, illustrates the importance to the patient of these evaluation sessions. From the moment that individuals become candidates, they are under constant supervision at the hospital to have their conditions checked. The medical staff takes great care to ensure that they will reach the operating theater in as healthy a state as possible. While waiting for an organ, the candidates undergo numerous tests and take medication to ensure that all bodily systems are functioning satisfactorily and to prevent infections when they undergo the operation. They also get comprehensive dental treatment. After the organ transplantation, great care is taken to reduce the danger of their exposure to infection because pills that they must take to prevent rejection of the transplant also weaken the body's immune system. The Waiting Period For most patients, the waiting period after the decision that they will receive an organ transplant is very difficult. They live in dread that they

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will not manage to stay alive until the operation. Generally, they do not feel good and cannot function socially. The following two testimonies illustrate these feelings. Arie, who had had a heart transplant, described to me how he felt and what happened to him while he was waiting. "From the moment they told me that I needed a heart transplant, to tell you the truth, I was not afraid of the surgery," he commenced. "Did you wonder what kind of heart you would get?" I asked him. His answer was, " N o . I never thought about the new heart at all during that time. I just thought about my situation. H o w would I get a donor? This anxiety lasted all the time; it just wouldn't go away. I don't know if the other recipients of heart transplants suffered as I did before their operations. I wept, although I had never wept before. I cried like a baby, with tears running down my face. I couldn't sleep. I didn't go to sleep in my bed for seven months. I dozed in an armchair for fifteen minutes at a time. I knew that I had to overcome these problems. My wife was suffering with me. I said to myself that I had better change my attitude, but I thought I should have to have some luck before I managed to do so." Avraham Shavit, another heart-transplant recipient, also described the time of waiting. "You prepare yourself for death. You sink into introspection. You dread the thought of how little time you have left to live. It is as simple as that. Then you start thinking that maybe you should begin to live it up while you are still able to do so; you should get up, go out, travel, do all the remarkable things you always dreamed of doing. Then you realize that you simply don't have the means or the physical ability to do things that you have never managed to do before. You also feel that if you are going to die, you don't want to know when it will happen and what it will feel like. Of course, I don't know if every transplant candidate feels the same way as I did. All sorts of people become candidates. Some of them try to cut themselves off from reality." He went on to say, "I had twelve false alarms to prepare myself for the transplant operation. The professor promised me that they were making every effort to find a donor for me as quickly as possible because the older you get the more difficult the operation becomes. During the waiting period you endure a terrible internal battle. On one hand you want to have the operation, but on the other, you dread it. Finally, just as you overcome your fears and are mentally ready for the transplant, they come and tell you that the heart they had planned to give you is not suitable. You say to yourself, 'There is still time. For what? For a continuation of the fear of the unknown, for the hope that perhaps they will find another heart that is more suitable.' You are still terrified because you don't know what is going to happen. It's like a game. The


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internal contest never stops. You prepare yourself because you know that you have no alternative; you'll undergo the transplant or you'll die. While you are having these thoughts, you are always waiting for the telephone to ring and summon you to the hospital. You have to prepare yourself for death, but you cannot help thinking, 'I want to live! Another week! Another day!' Every minute is precious! If you are lucky, God lets you live!" Most candidates describe the period of waiting in similar terms. Bauman (1992:13) explains that the fear of death is the fear of not being. People fear the absolute lack of everything that makes up life. Death is traumatic because the individual cannot imagine his own non-existence, even though he knows intellectually that death is real. During the period of waiting, patients feel that society has an obligation to provide the treatment they require. Sometimes they appear on the media to appeal to the public for help. All candidates for organ transplants very vividly remember the day and the exact time that they received notice to go to the hospital for the operation. Liat, who had kidney and pancreas transplants, described her experiences to me. "On Thursday, December 12, 1991, at 10:00 at night, I was lying in my bed in my pajamas. It was bitterly cold, although I had switched on the electric blanket. Suddenly, the heavens seemed to open up. Lightning tore through the sky, thunderclaps roared, rain and hail beat down pitilessly on the ground. 'O Mama Mia, what is going on?' I wondered." "The telephone rang, and my mother answered the call. I heard her talking to somebody. Then she came into my room. 'They want you urgently. Pick up the phone,' she told me. 'But who can want me at this hour?' I asked. 'Tell them I'm asleep,' I said." Liat laughed at the memory. Then Liat continued. "My mother said, 'Somebody at the hospital wants to talk to you.' 'At this hour?' I protested. 'Tell them to go to hell!' Nevertheless, I picked up the instrument next to my bed. A voice said, 'This is Professor —. Am I talking to Liat?' I said, 'Yes, Professor.' He said, 'I think we have suitable organs for you. Can you come to the hospital right away?' I protested, 'Listen, Professor! The hospital has already told me on three previous occasions that there were organs and I rushed to the hospital, but afterwards it turned out that they were not suitable for me. Perhaps you could examine the organs and decide whether they are suitable for transplants for me, before I rush out in this terrible weather, in the middle of the night!' His reply was, 'I need you here urgently so that we can do the x-rays and ECG before we start the operation!' My immediate reaction was to say, 'Operation? What operation? What are you talking about?' His response was, i ' m telling you! We are going to do your transplants as soon as possible!'"

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She went on to say, "I telephoned my brother. Despite the stormy weather and the lateness of the hour, he came to our house right away. We drove to the hospital. He couldn't find a parking space, so he dropped me at the entrance to the building. We got soaked. I said, 'Listen, it's such a terrible night, you had better go home. I'll go in and see what they want. They'll probably send me home, as they have done before. If I stay, you can come back tomorrow.' For some reason, he became obstinate and refused to leave me alone. I entered the building and went up to the department. They did everything they generally do to a patient before an operation. Then they said to me, 'We're going to operate later tonight. At about four in the morning.' Rather to my amazement, a stretcher came from the operating theater. A nurse said to me, 'Put on this gown. Hurry! We're going to the theater!' The gown was a crazy sort of garment, but I managed to put it on. We went through the passage to the room next to the theater. Suddenly the professor was alongside me. He was wearing his operating theater gown. I said, 'Hey, wait a bit! You seem to be taking this seriously!' I chuckled. The professor laughed with me and said, 'We are. Aren't you? H o w are you feeling?' So I said, 'Everything is fine!' Then he asked, 'Aren't you excited?' I answered, ' N o ! ' He said, 'But you must be afraid.' I said, ' N o ! Is there something to fear? I'm sure you'll give me an anesthetic. You should be excited. You have to do all the work.' He laughed and said, 'You are very brave, Liat. I'm proud of you. You'll be fine.' T w o other doctors joined him and they gave me an anesthetic, and after that I didn't feel a thing. I woke up at 5:00 in the afternoon and I drifted back into unconsciousness." From the moment Liat or any other organ-transplant patient wakes up and recovers, they become recipients. T o Be a Recipient As soon as recipients have had their organ transplants, they feel that they have received the greatest of all gifts, the gift of life. They are conscious of a distinct sense of obligation. They usually feel that they have to make some form of recompense somehow. While they were still waiting as candidates, they felt that society owed them something. However, after the operation, relations turn around and the obligation is theirs, to the society. Arie, the man who had had a heart transplant, spoke with me two weeks after the operation while he was still connected to all sorts of tubes and everyone permitted to talk to him had to wear sterile clothing. "When I get out of here, I'll organize a fund for people with organ transplants to collect money to promote transplantation. I'll organize conferences and I'll give lectures. I'll tell people what the ordinary man w h o has benefited from the donation of an organ feels like."

Partners for a Common Destiny 43 Margalit, who had had a kidney transplant, said, "I serve as a volunteer in an association to help rape victims, and in another association that helps the handicapped. I feel that I must do more to give something back to society for what I have received." These people feel an obligation toward society, not toward the individual donors of the organs they have received. For the most part, they are not interested in meeting the donor family; they claim that the hospital personnel informed them that it was undesirable for them to meet. As Liat, the recipient of a kidney and pancreas, put it, "If you got to know the family that had donated an organ from somebody they loved and mourned, your gratitude would have to assume an entirely different character. How can you thank somebody for something so miraculous as the gift of life? You can't just send them some flowers. What can you give them to make up for the beloved young person they have lost? What should you feel? Gratitude?" Most recipients feel that they have been born anew. Many celebrate the anniversary of the operation as if it were a birthday. Yehezkel's wife, when talking about her husband's organ transplant, said, "When anyone asks him how old he is, he answers, 'I'm one year old.'" Inspector (1992:69-74) points out that 73 percent of organ transplant recipients report they experience this feeling of being born anew, and that it is based on physical, emotional, philosophical, and social values and changes. Nevertheless, people who have had organ-transplants generally try to return to the previous routines of their lives. Gabriel Ram said three years after his heart transplant, "After the operation I stayed at home for two months and then I went back to work. At first, for four hours. Then it became five hours and finally a full, regular working day. Today, I do almost all the things that I did twenty years ago when I was younger and had my own, original heart. I feel free: free and happy." However, not all recipients succeed in self-rehabilitation like Gabriel did. Some find it difficult to return to former activities and social functions. Some can only do part-time work; some cannot work at all. According to data presented by Inspector (1992:19), only 58 percent of people who have had heart transplants manage to work, and only 36 percent resume their former occupations. Avraham Shavit, mentioned earlier, described his problems to me. "People who have had organ transplants need help to solve their problems. After the operation is over, the struggle begins. A man feels as if he has been left disabled. He is like a child who needs a babysitter. Alternatively, you can say that it is like being a cow that has kicked over the bucket of milk." All the recipients need medical follow-up. At first, this is intensive. Then it is less so, but they have to remain under hospital supervision

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for the rest of their lives. They also need social and psychological support, but they don't get these kinds of support. DONOR FAMILIES Analyzing available statistics, we find that the families in Israel who respond positively to appeals for organs come mainly from secondgeneration Israeli Jewish families of Western origin (see discussion on Arab donor families in Brawer Ben-David and Abu-Rabia 2002) who have at least sixteen years of education and earn average or higher incomes. Such families are usually small. These findings correspond with those from analyzing signed donor cards (Geocartography 1994). Half of the families I managed to interview were of European or American origin and half of Oriental origin. Only one family was religious. All the families were of average size (three children) and had median socio-economic standards of living. They present a broad range of ideas and opinions. Many families are reluctant to provide full particulars about themselves because they fear negative reactions from families and friends. Society generally considers the donor families to be heroic. Members of the medical team, too, display great appreciation toward them. They protect them as much as possible from unwanted publicity. A coordinator once said to me, "The organ donors contribute to society without getting anything in return!" The attitude that the families are heroes flows from the fact that in the system of exchange, the donors of organs are identified as making one-sided gifts for which they receive no recompense. The medical establishment encourages this attitude, because the doctors hope that the generosity of the donor will inspire emulation throughout the community and result in their getting more organ donations and more funds for their research. On the other hand, the doctors believe in guarding the anonymity of the donors, because this emphasizes the importance of the doctors as the exclusive intermediaries in the transaction, thus increasing their authority and the public's esteem for them. The Process of Requesting an Organ Donation Most of the donor families have lost young people to an accident or suicide. Many of the victims were in their twenties or thirties and in good health before their deaths. The shock of their death, therefore, was great; and because of this, many families find it very hard to accept the bitter blows they have sustained.. Rachel, a donor mother, had this to say: "The coordinator who met me immediately after I got the message that my daughter had been involved in a road accident understood that I was not in full possession


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of my faculties at that moment. Later, when I reconstructed the events of that day in my mind, I understood that she had tried in a very nice way to get through to me and to help me comprehend the situation. She took me to see my daughter. [My daughter's] main injuries had been internal. She was a very beautiful girl and she still looked very beautiful in death. Although there had been an injury to her eye, it was a very small one. I seized on little things. She was still attached to a urine bag, and I said to myself, 'Oh, good, she is still able to pass urine.' Although the coordinator explained the truth with great care and tact, I just could not believe that my daughter was dead." From a report published by Marpeh Medical Center, I learned how one should handle families when asking them to donate organs. The family is invited into a room, and the door is shut. Either a doctor or a coordinator makes the request for the donation of the organs. They can only make the request after the completion of the process of determining the moment of death. Furthermore, according to approved procedure, the donation should be requested only after the family has realized that their loved one is irrevocably dead. If the family agrees to the donation, they sign a form, and the doctor who handled the case and the head of the hospital sign, too. Then the doctor explains how long extracting the organs will take and recommends that they go in to take their leave of the deceased for the last time. The hospital gives the family a death certificate and urges them to leave the hospital as soon as they can. Later, at the end of the whole process, the body is handed over to the family for burial. From a conversation I had with the coordinator, I learned that the hospital takes great pains to ensure that it hands the body over to the family in good condition for the funeral; it makes certain that there are no external signs of what was done to remove organs. At a later stage, the hospital always sends a letter of thanks to the family. If the family refuses to donate the organs, it is treated like any other family of someone who has died in the hospital. The medical team uses every possible means to prevent any contacts between the donor family and the organ recipients. They tell everyone that it is preferable this way and advise the donor families that they will again experience a profound sense of bereavement and sorrow if something happens to the recipient of the organ transplant. To start, some donor families are interested in meeting recipients of organs from their loved ones, but since the hospital takes such a strong line, the donor families drop the idea. I found, though, that many donor families would like to know whether the transplant succeeded or failed (see Simmons et al. 1987:368). Other donor families prefer to remain anonymous, but sometimes newspapers identify donors and they cannot resist the pressure to come into

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the public eye. Sometimes they yield to the argument that they can serve as examples to others if they come into the open. The Process of Decision-Making Simmons et al. (1987:348) report that hospital staff seeks the approval of almost all the members of donor families, except for the younger relatives, when a decision is made to donate an organ. The younger relatives hear about the decision later. Most of the families I interviewed told me that the parents made the decision and then informed the children. In all the cases I knew of, the deceased were young and unmarried. Other members of the extended family were informed of the decision at the earliest opportunity. On the personal level, the parents made the decision almost spontaneously, after short discussions with each other. Shmuel, a donor father and an observant Jew, explained that there were many details requiring clarification, according to the Halachah (Jewish religious law). Thus, Shmuel and his wife, like many other observant Jews, consulted with a rabbi, who ruled that the donation of organs was a mitzvah, a positive commandment according to the Halachah, because it helped to save other people's lives. Reasons for Consenting to the Donation The donor families usually explained their motives for agreeing to the donation as either altruism or a feeling that by making the donation they would be giving meaning to their unexpected and inexplicable tragedy: • The need to make the decision gives the family a feeling of control over their lives at time of great difficulties. • A feeling that the donation means that the deceased obtains a form of immortality by living on in the body of the recipient. • The wish to feel that they become part of the social body, by performing an act that society approves of. • The deceased was a registered holder of a donor card, which indicated to the family that he wanted to donate organs in the event of death (see Simmons et al. 1987; Robbins 1996). Reasons for Refusing to Donate the Organs N o data concerning why families refuse to donate organs have been collected in a systematic way and published. I learned the reasons about this aspect of organ transplantation from what was said at various conferences and from what I was told by coordinators. I found that the


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following issues actuate many families in Israel who refuse to donate the organs of their loved ones: • Religious convictions. According to a Geocartography (1994) survey, 53 percent of the public believes that the Jewish religion does not permit organ transplantation. • Ignorance about what constitutes death of the brain stem and fear among families that they may be supporting the stoppage of life. • The wish to preserve the wholeness of the body. • Having no idea what the deceased would have wanted and refusing to decide for him or her. • The difficulty of making such an important decision at a time of great shock. If it were possible to consider the matter quietly over a period of time, it is possible that families who refuse might change their mind, but the medical teams have to get organs without delay after the moment of death. • The lack of information about organ transplantation (see also Robbins 1996:186). Many families who lose loved ones suddenly, have no knowledge whatsoever about the transplantation of organs or about the meaning of brain death. They feel that taking away the organs of somebody they have loved poses a threat to the families. The medical teams and the bodies that frame the nation's health policy stress the importance of educating the public about organ transplantation and the need to donate organs. A broader discussion of the motives of the families to donate organs and the reasons why other families refuse to donate is set out later in this book. Although the medical team, the candidates, the recipients, and the donor families are all involved in the transplantation of organs, this involvement does not necessary create a system of relations among them beyond a certain degree of goodwill and a basis for the establishment of exchange relations among them. In the following chapter, I attempt to clarify what these exchange relations are and review the possibility of defining a system of relations constructed around organ transplantation as a system of exchange relations.


Chapter 3

Is Organ Transplantation a Gift

Exchange? It seems that everyone who considers the subject of organ transplants automatically tries to associate it with social exchange. Thus, they speak of "the gift of life," "the donation of organs," "the donor," "the recipient," "the mediator," "reciprocity," "commitment," and even of "organ traffic"; all these terms and concepts are closely identified with processes of exchange. Until about ten years ago the exchange was based mainly on the donation of organs and relied on the generosity of individuals in society. But the persistent shortage of organs raised the suggestion that the organ donors be remunerated, and that opened discussion on its ethical aspects and whether offering payment for organs would encourage more donations (see Lock 2002; Cantarovich 1999; Murray 1996; Cohen 1989; and Hansmann 1989). The rationale that first led the people responsible for defining organtransplantation policy to use the analogy of gift-giving and organ donation is explained by Gerrand (1994) as resulting from the wish to ensure that the organ donor be motivated by the will to help a person in need. They believed that such an approach showed respect for the deceased's body, thus avoiding offense, and it honors the donor, too. To achieve this aim, members of the community must believe that the act of making such a donation is morally acceptable and desirable. It has to be a voluntary act, motivated by altruism. This type of thinking has led the Western world to accept the analogy of the donor family agreeing to an organ transplant and somebody giving a present. It has become part of the accepted sociological explanation for the phenomenon of organ transplantation (see Prottas 1983; Prottas and Batten 1988; Childress 1989).

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In recent years, some professionals who deal with organ donations, together with sociologists, questioned the conceptual framing of organ donation as "a gift of life" and suggested using the term commodity instead (see Peters 1990; Blumstein 1992, 1993; Daar 1992; Martin and Meslin 1994; Koenig and Hogle 1995; Marshall et al. 1996; RadcliffeRichards et al. 1998). The metaphors of "commodity" and "gift," or the suggestion to turn body organs into commercial objects, are all familiar ideas applied to give-and-take transactions. Consequently, it is not surprising that anthropological and sociological literature analyze the transplantation phenomenon as an exchange. The fact that the parties to an organ transplantation use the terminology of an exchange, together with recognition that an act of giving and receiving is taking place, has also prompted me to discuss this phenomenon within the theoretical framework of an exchange. The theoretical concept of an exchange is apparently most prevalent in sociological literature. Researchers deal with this theory and use it in a variety of contexts. They analyze situations in detail to ascertain the "exchanges" involved. According to Simmel (1978:387), ail interactions between people are based, in fact, on exchanges involving negotiations. These exchanges appear to explain the widespread use of the concept regarding organ transplants. For, if all relations between people are based on exchange, analysis of their behavior will certainly require applying the theory of exchange. Classic social anthropologists and sociologists relate to this concept and to its practical applications and examine social relations mostly as an exchange of objects between two individuals or between groups (see, for example, Sahlins 1965; Malinowski 1922; Homans 1974; Blau 1964). But, modern researchers relate to exchange more as a symbolic system of relations, without the need for an actual physical transfer of objects (see, for example, Appadurai 1986; Humphrey and Hugh-Jones 1992; Strathern 1992; Baudrillard 1993). According to the modern concept, the system of exchange is more complex than previously thought, both with regard to the object exchanged and with regard to the system of relations built up around it. The Concise Oxford Dictionary defines exchange as "the act or instance of giving one thing and receiving another in its place" (1998). Blau (1964:6) holds that exchange behavior involves giving something when there is an expectation of getting something back. Social relations that are not based on reciprocity but are inspired by faith or a belief in justice cannot come under this definition. Blau's basic assumption was weakened when theoreticians insisted that there could be a process of exchange without the expectation of any immediate return. The need to define what are gifts, charity, and deeds of loving in social exchanges became an inseparable part of the discussion

Is Organ Transplantation a Gift Exchange? 51 of whether such a situation was possible. Nevertheless, there can be no doubt that an act of exchange is at the basis of the existence of social relations, as claimed by Simmel. The socio-anthropological and sociological discussion about exchange focuses on four subjects: 1. 2. 3. 4.

The The The The

exchanged object itself and social ways of determining its value. motives of all the parties to the transaction for entering into it. social relations built up in the course of the social act. manner in which the act of exchange is carried out.

Although all the theoreticians are in agreement on these four subjects, they are divided in their ideas about whether people are more motivated by economic interests or psychological and sociological needs (Frazer 1919; Malinowski 1922; Blau 1964; Homans 1974; Ekeh 1974). Theories that stress the economic factor assume that the individual is actuated by cold calculations of how to gain the maximum profit. In contrast, theories based on psychological and sociological thinking present an image of an individual motivated, not by desire for profit, but by social values and norms. Most anthropologists and sociologists, when discussing exchanges, stress social relations and structures rather than how the individual thinks. Nevertheless, I think that the exchange relations are made possible through socio-cultural ideas, which are the result of social interaction and situations that the individual has experienced. These concepts also shape the social reality in which the act of exchange takes place. When individuals meet to effect an exchange, they act according to what seems to them worthwhile in the specific situation. In this process, the value of the object to be exchanged is examined and determined principally by factors of availability as well as by the proposed method of performing the exchange and its feasibility. Only when agreement on all these factors is reached is the exchange carried out. Individuals join together to carry out the exchange, which is of socio-cultural significance. For the purpose of this monograph, I examine first the opinions of researchers concerning the main subjects outlined above and then discuss the limiting effect of their views; all this is then considered as a theoretical basis from which to examine all factors involved in the transplantation of an organ. THE OBJECT EXCHANGE AND THE SOCIAL METHODS OF DETERMINING ITS VALUE The socio-anthropological perception of object exchange accepts the assumption that it is possible to exchange any object. From the cultural

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viewpoint, it appears that everything can pass from one owner to another, although not everything is salable. Appadurai (1986:4) contends that every object can become a commodity but can also change and cease to be one. According to him, therefore, a commodity is anything that at a certain period of its social existence is exchangeable. The possibility of a thing becoming an exchangeable commodity in a certain social context depends on symbolic and moral classification standards and criteria, which are symbolic and moral. To be precise, the identification of an object as a commodity is considered in the existing cultural framework. It follows, then, that a social context exists in which it is possible for anything to become a commodity under certain conditions; although under other conditions it does not do so. For a thing to become a commodity, temporary cultural factors must be linked with social factors. In modern capitalist society, an increasing number of things are defined as commodities (1986:15). Although every object may become exchangeable, in every society there are some things that are publicly excluded from recognition as economic commodities (see Kopytoff 1986:73). Socio-anthropological literature presents various examples of this exclusion. For instance, in order to preserve individuals' commitment to each other, in some societies food is not a salable commodity because it is essential for life and society does not permit its trading. Nevertheless, there is no social objection to it being given in exchange as a gift or in hospitality. Thus, in these societies people relate to food as if it were a possession of the community as a whole (see Sahlins 1965:173). When a certain object is considered exchangeable or marketable (not necessarily for money), its value must be determined. This raises the issues of how to determine the value of the object, and whether the value is calculated as part of the act of exchange or whether the exchange is only executed after the value of the object has been determined. One approach is based on the law of supply and demand, which determines the price of an object according to the degree of its availability. From this point of view, there will always be a rarity of some objects, and this rarity will cause a higher price. Each partner in the exchange procedure attempts to gain maximum self-benefit by determining the lowest value when acquiring the object and maximum value when offering it. The importance of the task of society and of culture in determining the value of the object and in laying down the rules of the exchange diminishes, and the emphasis is on the dominance of the individuals, who have freedom of choice to determine their best alternative. This approach ignores situations in which the rules of economics do not apply to the exchange of gifts and services. Other theorists are opposed to this view. They ascribe symbolic values to the exchanged objects, and they stress the importance of the parties'

Is Organ Transplantation a Gift Exchange? 53 culture in determining the rules of the exchange. According to these theorists, the objects have no intrinsic value—only the value they represent for the parties to the exchange (Ekeh 1974:200). Simmel (1978:95) distinguishes between the value of an object and its price and maintains that the exchange is made possible by determining the price. In his view, money provides the means that enable the parties in an exchange to neutrally work out the value of the object exchanged, and thereby to fix its price (1978:96). Kopytoff (1986:86-87) adds that Western societies commercialize and transform everything into a commodity. In certain circumstances, a person may develop an opinion of his body as a commodity. As a result, an increasing number of people propose paying money to purchase blood for transfusions or to buy organs, particularly kidneys, for transplantation. Following the discovery of the medicine cyclosporine, which reduces the likelihood of organ rejection, the success rate of transplant procedures has increased, leading to greater faith in the procedure and increased numbers of individuals who desire transplant operations. This evolving medical climate has caused a growing shortage of organs all over the world (Rothman et al. 1997; Rothman 2002). This shortage creates an international trafficking in organs, sometimes illegal, involving surgeons, patients, live donors, and brokers. Nancy Scheper-Huges (2000) conducted ethnographic research in 1996-1998 in three sites: Brazil, South Africa, and (in collaboration with Lawrence Cohen) India. She describes an illicit and global organ traffic. In some cases, kidneys are purchased from living donors in India. There are also allegations of child kidnapping and kidney theft in Brazil and Argentina, the sale of organs from executed prisoners in China, and illegal harvesting of organs in South Africa, without permission and knowledge of the families of the dead. Vidya Ram (2002) reports the legal trade in kidneys in Iran, where Charity Foundation for Special Diseases pays about a thousand dollars to the donor from a government fund. Scheper-Huges notes that the flow of organs is usually in one direction: from the south to the north, from third world to first world, from poor to rich, from black and brown to white, and from female to male. The Bellagio Task Force, composed of transplant surgeons, organ procurement specialists, human rights activists, and social scientists (including Scheper-Huges), met in Italy in 1997. It reported that residents of Kuwait, Saudi Arabia, Bahrain, Oman, United Arab Emirates, Malaysia, and Singapore traveled to India to obtain kidneys for transplantation. Taiwanese, Japanese, Koreans, and sometimes residents of Hong Kong fly to China (Rothman et al. 1997:29, 2739-2745; Rothman 2002). For the same purpose, Israelis travel with their surgeons to India, Turkey, and eastern Europe.

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In an August 2002 symposium in Jerusalem, Professor Fridlander, head of the Hadassah Medical Center's kidney transplant clinic, reported that forty of the Center's Israeli patients traveled to South Africa, Estonia, Moldova, and other countries. Each paid as much as $200,000 for a kidney transplant. According to the Bellagio Task Force report, the cost of a kidney transplant ranges from $15,000 to $70,000, of which the donor receives not more than 10 percent. Trafficking in human organs is clearly an illegal act of exploitation, condemned by many international medical and human rights organizations. Organ sales were legally prohibited in India in 1994 (see Cohen 1999) and in Brazil in 1997 (see Scheper-Huges 2000). Nevertheless, the traffic in organs for transplant continues concurrently with the international debate on whether donor families should get any kind of remuneration. Marshall et al. (1996) summarize the reimbursements suggested by professionals for cadaveric donations: (1) grants for burial expenses, (2) preferential access to organ transplantation, (3) discounts on medical insurance premiums, and (4) payment for organs to beneficiaries according to agreed values. Murray (1996) rejects these suggestions by claiming that these ideas reflect a narrowly economic view of people and their morality that fails to comprehend the significance of the death to the surviving family. When researchers consider the definition and evaluation of an exchanged object, they also consider gift exchange between parties, even though such a transaction is not a simultaneous giving and receiving of objects. Some anthropologists think that gifts should be considered essentially the same as commodities and commercial goods (Appadurai 1986:13; Bloch and Parry 1989:9; Gell 1992:143). According to these researchers, the decision whether a particular object is a gift or a commodity depends on the nature of the relations that are built up during the process of the exchange. Gell (1992:146) opines that their nature provides the social context in which the particular transaction is performed. The gift is not defined by its practical or absolute value as an object in the marketplace but by the kind of relations that activated the donor and the recipient. The people active in the transaction establish the value of the gift, inspired by dependence, reciprocity, mutual commitment, and equality or inequality. The giving of a present is essentially a social act that includes the expectation of reciprocity. The gift is usually devoid of any great economic value and is given to somebody who is close to the giver (Appadurai 1986:11). It brings the parties, donor and recipient, closer together by a special bond, so that the gift personifies the recipient in the eyes of the donor (Schwartz 1967; Marx 1973; Strathern 1992; Abuhav 1998). Some researchers stress the distinction between objects that are commodities and objects that are gifts. Gregory defined commodities as things that had acquired both a practical value and an exchange value for social

Is Organ Transplantation a Gift Exchange? 55 purposes. The recipient's need for the object gives it practical value. The fact that it can be exchanged for a commodity in the recipient's possession gives it exchange value. Consequently, a system of objective relations is created. In contrast, a gift is a thing transferred from one person to another in a personal system of relations. These social relations are what inspire the exchange of gifts and are its main goal, rather than the nature of the thing exchanged or the extent of the recipient's need to receive it (1982:10-12, 19). Carrier (1990) distinguishes between gifts and commodities, where "anonymous commodities" are transferred to others in exchange for payment and are emotionally insignificant. Gifts are precious to a donor, who transfers them to a donee as an expression of affection. An analysis of the process of giving presents in modern American society makes it evident that in practice most of the things that are given as presents are in fact commodities; but in the act of giving and receiving presents, there is a process by which the object becomes something personal. The difference between the act of economic exchange and the exchange of gifts thus lies in the intentions of the giver when giving the object. In his later publication, Carrier (1995:162-163) characterized a "good present" as one that reflected and expressed the inner self and inner feeling, while a "bad present" was one given from interests and constraints. Thus, Murray (1996) explains that organ supply should be based on donation, a kind of gift that creates social relations of solidarity and obligations. Since giving presents is by definition an interaction, gift giving, including organ donation, cannot be presented as an independent personal act. The giving of the presents, the timing, and the decision concerning the recipient are socio-culturally internalized. Thus, although the decision is apparently independent, it in fact emanates from conceptions and behavior patterns that the individual does not control. In summary, all the above supports my contention that the giving is only superficially independent and voluntary; although almost any object can be transferred from the ownership of one individual to another in an exchange, in effect, society determines the cultural level on which objects will be used in this process. Admittedly, some objects will always remain outside the game. The value of an object is determined both by its financial cost and by its cultural importance. Its rarity is of great importance in determining its value. When a particular object is transferred from hand to hand without the expectation of some immediate financial exchange value, it is considered a gift. However, the mental attitudes of the donor and the recipient are a better means of recognizing that something is a gift than is any exact formulation; hence, a gift is first and foremost a product and catalyst of social relations.

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The parties involved in the transplantation of organs, as well as sociological commentators, consider the transaction an act of exchange. Without a doubt, the activity does comprise interactions that, by definition, are exchange relations. Moreover, it includes a process in which the organ (that is, the object) is transferred from the deceased person to the recipient of the transplant. Change of ownership is a process of exchange. However, in this particular case, there is none of that reciprocity that appears to be a condition of gift giving. The donor, if deceased, is not regarded as the owner of the object transferred and obviously cannot receive anything in exchange for the organ. Furthermore, the family of a deceased that permits the donation is neither the legal owner of the body nor of its organs, although they feel emotionally that they are. Hence, the suggestion that organ donation fits the theoretical framework of an act of gift giving is problematic (Koenig and Hogle 1995). Carrier (1995:10) defined social transactions as personal and affective and that they establish gift relations, while an economic transaction is impersonal and rational, establishing a commodity relationship. Neither social transactions nor economic transactions are appropriate definitions for organ donations, since donations present a kind of impersonal interaction on the one hand and irrationality on the other. The theoretical discussion of social exchange shows wide agreement among researchers that every object can be exchanged on condition that the social context permit such an exchange. Hence, if the body of a deceased person or parts of it are perceived as objects that cannot be commercialized, as in Western societies in general (see Murray 1996:116), and in Israeli society in particular, no act of formal sale will take place. People's desperation will thus lead them to secretly develop a black market. The proposition that the body parts, unlike most other objects, are not salable objects was submitted first to broad public discussion in Israel when the Maariv newspaper published an article in July 1996 disclosing that kidneys were being sold and bought for transplantation. It also alleged that senior doctors were involved in such deals. The exposure provoked a storm of controversy. The minister of health set up a committee to investigate exactly what had happened and ordered that any doctors involved be suspended from practice. The cultural position in Israel clearly rejects the idea that a person's body or organs are commodities to be bought and sold. On the other hand, Western societies, including Israel, do permit the transplantation of organs where no financial payment or other tangible asset is given in exchange for them. In March 1998, a bill was passed to regulate the activity of the Israeli National Center for Transplants and to determine under what circumstances a live donor could give organs. According to the bill, only immediate relatives, including the husband, wife, parent, child, sibling, grandparent, uncle, aunt, and cousin could give one kidney


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or the lobe of a liver, except for rare cases in which non-related donors wanted to give an organ and were not paid to do so. This is close to the sociological approach, which draws a parallel between donating organs and giving objects as presents for reasons of personal affection or as contributions to charity (Fox and Swazey 1992; Gerrand 1994; Sque and Payne 1994; Lock 2002). However, comparison between the donation of organs and giving presents does not solve the theoretical puzzle for the researcher, because the similarity between the two actions is only partial. Gerrand (1994) suggests that the use of the term gift in the context of organ transplantation is unsuitable, despite a superficial similarity between normal gifts and the donation of organs for transplantation, and where there is a voluntary transfer of property without calculation of its value or expectation of anything of equal or greater value in return. When considering the donation of an organ in the context of organ transplantation, one must bear in mind that the intention is to transfer something far more personal than the usual type of commodity used for a present. The act of giving a present is carried out in the context of an existing relationship while, as a rule, there is no such relationship between the donor and the recipient when an organ is donated. Generally, the recipient does not know who the donor is. Moreover, the object (the organ) is transferred to the recipient through a mediator, and the donation is given by the family of the deceased and not by the actual person to whom the organ belonged. The family agrees that the medical establishment should perform the transplant. Gerrand and others (see, for example, Sque and Payne 1994) ignore this important fact, contrary to Hogle (1995) and Sharp (2001), who note that in the case of organ transplantation the actual agreement to donate the organ is always by the family and not by the deceased. In many countries, including Israel, even if the deceased had a donor card indicating a desire to contribute organs for transplantation after death, except in extreme cases the request for the organs is made to the deceased's family, who has the right to reject it despite the donor card. The gift, therefore, is not personal; and the object, the organ, cannot be transferred directly from individual to individual. The act of donating organs is not similar to any other type of gift mentioned earlier. Contributing organs does not emanate from a commitment to bring gifts at formal events, nor does it flow from ties that activate people to give presents to friends and relations. Furthermore, the donation of organs is not similar to donations given anonymously to charity; in charity cases the recipient does not know who the donor is, but the donor might know the identity of the actual recipient. When organs are donated, typically both sides remain unknown to each other.

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Gerrand (1994) and Lock (2002:318) suggest a similarity between the donation of organs and charity, although sociological literature, as we have seen, describes charity as a type of gift. Gerrand's criticism of comparing organ donation to gift giving is based on the differences between the relations built up around transferring gifts, and the social relations built up around gift giving and organ transplantation. She ignores the fact that the quality of the object exchanged dictates the type of relations built up. More than any other kind of exchange, in organ donation the social significance of the object exchanged determines its value. In this special system of exchange, there are also special kinds of relations, which will be discussed later in this chapter. The following section examines the motives of individuals in a society when they engage in organ exchange, and it discusses both the manner in which sociological and anthropological literature examine these motives and whether this manner can explain the motives of all the parties involved in the exchange. THE MOTIVES OF PARTICIPANTS IN AN ORGAN TRANSPLANT EXCHANGE Social anthropologists, sociologists, psychologists, and economists believe that the basic motive actuating a person to enter into a system of exchange is the urge to satisfy some need. Simmel (1978:80) explains that exchange is the act that forms a connecting link between the desires and wishes that are the source of all human activity, and the satisfaction of needs that becomes possible through an exchange. Explanations of the motives of those involved in exchanges vary according to researchers' weltanschauungen (worldviews). Theoreticians who have an economic outlook consider people to be rational creatures with desires, aims, and values who cannot acquire everything they want, because they live in a world of relative scarcity and therefore are forced to make choices. After examining all the possibilities and potential benefits and drawbacks and what course to pursue to get what they want, they decide whether to participate in an exchange (see Frazer 1919:90; Barth 1966; Heath 1976; Emerson 1982:11). Blau distinguishes between an economic exchange and a social exchange. In a social exchange, the recompense may take the form of reciprocity or a commitment to give something in the future. A party to the exchange may contribute some kind of service and thus create in the beneficiary a feeling of obligation. According to Blau, the commitment in social exchange is general and not clearly defined, and the profit is not defined in terms of an unequivocal price. The motive for entering into a social exchange is to create social ties or obtain power and social status (1964:89, 9 3 - 9 6 , 106-107). On the other hand, in an economic exchange, the profit


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is precisely defined and the obligation is specific. The ability to give on the one hand and to create a commitment on the other defines the social status of the individuals involved and the measure of power concentrated in their hands (see the examples of Marx 1973; Abuhav 1998). Other theoreticians stress the social aspect and see in it the exclusive explanation of why the individuals joined in the transaction (Malinowski 1922; Mauss 1954; Homans 1974; Levi-Strauss 1969; Gregory 1982). These authorities explain that the motive for entering into an exchange is the need to create a social network linking the participants in the transaction; the recompense derived from the exchange is wider or stronger social ties. Theoreticians also consider the extent of control individuals have over the circumstances that induce them to participate in an activity. Appadurai (1986:57) contends that a political factor in the form of elitist groups affects the process of exchange. People are not mere marionettes in a cultural theater. They also have to dance to the flutes of interested groups who disguise their needs by means of fashions, restrictive laws, and taboos and thus influence them to participate in the act of exchange. In contrast, other researchers stress individuals' ability to make decisions and to be directly active in the exchange game (see, for example, Barth 1966; Heath 1976). In spite of the wide differences of opinion among them, it seems that all theoreticians agree that the completion of the exchange brings to an end the participants' need to gain something from the process. In my opinion, ascertaining what that "something" is, is the key to understanding what persuades people to take part in an exchange. According to Appadurai (1986), the focus must be on the objects involved in exchange processes, because those objects animate people's desire to possess them, even to being prepared to surrender other possessions in return. People's decisions are motivated by the cultural internalization of their desires and by social forces. Culture determines the category to which the object belongs. Hence, the motive of the individual in participating in the particular act of exchange depends not only on the nature of the object but also on the socio-cultural context in which the act takes place. The moment a particular object is identified culturally, therefore, it can be transferred, its value can be determined, and the exchange framework can be organized. Transactions have to be organized anew every time one of the things involved is supplanted by something else. Discussions of the participants' motives should be based on the understanding of the quality of the object and its social significance. These explanations of social and individual motives for an exchange assume that there is reciprocity between the giver and the recipient, and that each of them tries to gain something, even if the object is given as a gift without any expectation of recompense.

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There are times when the act of exchange is one-sided: a giving based on absolute moral principles. Such a transaction can be described as on the borderline of reciprocity. Researchers employ the concept of altruism to explain what induces an individual to give such an apparently onesided present, but this concept seems to be too vague for use as an analytical tool to help clarify the motives of the individual. However, many researchers, among them economists (for example, Arrow 1975; Margolis 1982; Liebrand 1986), do include altruism among the concepts of profit and loss. They define an act of exchange as altruistic when the profit of the donor is less than the profit of the recipient. Psychologists and social psychologists studying the field of helpful behavior devote a great deal of attention to this concept of altruism (see, for example, Macaulay and Berkowitz 1970; Bar-Tal and Nissim 1984; Dovidio 1984). In defining altruism, they put the emphasis on altruistic behavior. Piliavin and Charng (1990) contend that altruism is any kind of behavior that involves caring for somebody else more than for oneself. They and others (for example, Pines 1982; Schwartz and Howard 1984; Batson 1987) focus on what motivates the individual to act altruistically. Their definition does not connect altruism with exchange relations and does not make reciprocity or commitment on the part of the recipient a vital part of the relations between the donor and the donee. Thus, for them, altruistic behavior need not derive from the expectation of receiving some form of consideration. If the behavior is such that it is clearly actuated by desire to help or care for another, whether or not there is any benefit in return, it is defined as an altruistic act. Such an act may be inspired by the desire to gain prestige or esteem (Boe and Ponder 1981), or by the need to acquire social approval (Kerber 1984; Deutsch and Lamberti 1986). Researchers in the field of psychology have inquired whether there really is an altruistic personality or whether altruistic behavior flows from personal norms, because some people have a high level of moral development (see Schwartz 1970; Schwartz and Howard 1982). Another possibility (Farnill and Ball 1982; London 1970) is that the givers have adventurous personalities or feel empathy for the persons they help (Batson et al. 1988) or, alternatively, a passing mood actuates them (Bower 1981; Forgas et al. 1984; Clark and Teasdale 1985). Rushton (1980:7-10) suggests another approach and defines altruism according to the outcome of an act. When a person is inspired only by a desire to help, his behavior is altruistic, but if he receives some benefit such as prestige, his behavior is egocentric, although it is also social. Many sociologists have found it difficult to accept this concept, although some do tackle the subject (see Chadwick-Jones 1976:248; Titmuss 1970; Heath 1976:152). Sheleff (1978:43, 165-166) contends that the motives


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for altruistic acts are deeply ingrained within the social entity and flow from the need for social relations in which there is no direct, immediate connection with expectations of recompense. Nevertheless, most sociological researchers believe that altruism is only ostensibly so and that the giving is really a repayment of past obligations or inspired by the certainty that the recipient will repay in some way in the future (Gouldner 1973:240; Chadwick-Jones 1976:251). This discussion of altruism by sociologists not only decreases our understanding of the motives of the parties participating in the exchange, but even hinders it. First, these researchers examine the merits of only one side of the altruism equation; they are concerned only with the donor. If they considered other aspects of the equation, some acts defined as altruistic would become explicable in other ways. For one of the parties to the exchange to become a donor of an object or services, there has to be another party who is ready to accept the gift. However, the researchers regard this truth as self-evident and unimportant (see Mauss 1954 and, following him, Fox and Swazey 1992:35). Second, the discussion does not increase our understanding of why, in certain situations, some people display altruism while others do not. If altruism were indeed something firmly rooted in social norms or intrinsic to the nature of man, we should expect such an attitude from all individuals in society. Admittedly, some psychological theories do explain that these behavioral variations are due to personal characteristics. However, psychological theories do not accept that altruistic acts may follow from social concepts or that readiness to give some thing or some service to another without getting any recompense in return is connected to the individual's socio-cultural context or place in the social structure. For instance, let us consider the willingness to donate the organs of deceased family members for transplantation. Cleveland (1975) presents data from a study in the United States showing that only 20 percent of African Americans expressed readiness to donate organs, compared to 67 percent of the rest of the population. Youngner (1996:44) supports this data and explains that the refusal among minority groups to donate organs emanates from mistrust of organized medicine, due to historical reasons and because they have little confidence in their protection by the law. Data supplied by the Geocartographic Institute of Israel in 1994 revealed that 42.9 percent of Israelis of Asiatic origin, 40.7 percent of Israelis of non-Asiatic origin with low education levels, and 61.5 percent of those with very large families were not prepared to donate organs. Can such data be explained by personal characteristics alone? Third, according to the theories of sociological researchers, it seems there are great variations in the motives for altruistic behavior. This raises the need to seek a more definitive explanation than one-sided giving for an individual's motives for performing an altruistic act. Therefore the

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question why a person chooses to act in a particular way and not in another way remains legitimate. Fourth, the sociological discussion of altruism presumes that there are only two parties in an act of exchange in which an object or service is given without recompense; whereas, in fact, there may be many people involved in the act, some of them covertly. Society considers the donation of organs for transplantation to be an altruistic act committed by the donors; this belief is often expressed in the media, both printed and electronic. Giving an organ for transplantation appears to be a one-sided act of exchange without expectation of receiving any immediate recompense. The urge to take care of the needs of other human beings seems to be what causes the donors to act as they do (Titmuss 1970; Marshall and Fellner 1977; Simmons et al. 1987; Rushton 1980; Prottas 1983; Robbins 1996). The donors themselves explain that their generous action is primarily the outcome of their desire to help others in need. Prottas (1983) presents data from a survey organized in 1982 in New England; according to his data, 79 percent of the families who donated organs said that the wish to help others was the dominant motivation for donating their loved ones' organs. From the point of view of the public, the donation of organs is seen as an altruistic act, and the donors are regarded as heroes. Zvi Elush, a journalist for the Israeli newspaper Yediot Abaronot, wrote an article for the August 8, 1994, issue about a woman named Ogenia, a kibbutz member who died at the age of thirty-three. Her organs were donated to patients in need throughout the country. Her husband, the rest of her family, and all the other members of the kibbutz were very proud of the decision to donate her organs to save the lives of others. An article by Yuval Peleg in the same newspaper on April 4, 1995, quotes the deputy head of the Rambam Medical Center in Haifa, Dr. Zvi Ben-Yishai, as saying, "The noble mother offers the organs without our even asking for them!" Numerous other examples can be cited to show the high esteem in which the Israeli public holds those who decide to donate organs. Nevertheless, merely treating the donation of an organ as an altruistic act does not increase our comprehension of the social and cultural significance of the phenomenon. The fact that the donation is a unilateral social act in which there is only giving brings us back to a consideration of the body as an object of exchange and raises questions about the motives of the donors. Data reported by the Adi Association1 in 2003 indicate a significant disparity in the readiness of different sectors of Israeli society to donate 1

http://www.health.gov.il/transplant

Is Organ Transplantation a Gift Exchange? 63 organs. This revealed that only 4 percent of the general population in Israel was willing to sign a donor card, compared to 15 to 35 percent in Europe and the United States. This raises the question of why the population of Israel responds so poorly to an appeal for organs, while the response in other countries is so much better. To find an answer to this complex question, it is necessary to examine socio-cultural ideas in Israel about life, death, and the significance of the body; the answers to this inquiry will help to explain what Israelis think about mutual help behavior, and what is needed to induce people to be parties to organ transplantation. I will discuss these issues in the next chapters. The discussion of altruism, a concept explained in detail earlier in this chapter, has encouraged sociological researchers to examine the social relations that develop among people during organ transplantations. THE DEVELOPMENT OF SOCIAL RELATIONS DURING THE SOCIAL ACT OF ORGAN TRANSPLANTATION An examination of the social relations born from an act of exchange reveals distinct differences between collective exchange relations and individual exchange relations (Malinowski 1922; Mauss 1954; Rubel and Rosman 1970). Social relations also differ between economic exchange and social exchange (Blau 1964; Levi-Strauss 1969; Ekeh 1974; Emerson 1976; Parkin 1976). As was explained previously, in economic exchange processes, relations between the parties in acts of exchange are impersonal and limited in time; and each party aspires to derive the maximum profit possible from the transaction. In contrast, when the exchange is a social one, relations between the parties are based on the recipient's personal commitment to provide some form of recompense in the future, and also on the creation of a feeling of dependence in the recipient. However, the theoretical dichotomy between these two types of relations does not always stand the test of reality. For instance, when money is given as a present, it is regarded as belonging in the domain of economic relations, but is also a gift (Bloch and Parry 1989:8-9; Abuhav 1998). This example brings us back to Gregory's view that when focusing on the exchange of gifts, greater emphasis should be placed on the nature of social relations between the parties than on the character of the object exchanged, because the exchange of gifts is primarily a social act. Carrier (1990), who developed a theory in the context of gifts given in modern American societies, connects the degree of the parties' closeness in the exchange with the type of relations created by the exchange. In a modern nuclear family, the model of exchange relations used is that of giving without expectation of recompense; while in the framework of the

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extended family, there is less readiness to give presents and there is an expectation of reciprocity. Outside the nuclear family framework, gift relations are more formal and are based more on personal interests and the expectation of getting some sort of return for the gift. The further away the parties are from the nuclear family framework, the more their gift relations are expressed through less-intimate gifts. In contrast to other researchers (see Gregory 1982:46-48), Carrier describes a system of relations in which the gift admittedly results from connections between the people involved but does not create dependence. The participants are close but independent, and able to control relations and the method of carrying out the exchange. Parkin (1976:170-171) finds that the very fact that a gift can symbolize the relations between parties supports his contention that the parties in an exchange of gifts are active and not passive. If the gift has symbolic significance, the individual can decide to whom and in what circumstances he wants to give it (1976:100). Researchers assume that opportunistic reciprocity exists between the parties in gift relations, making it possible for these relations to endure. There is an understanding that if the exchange system is not based on economic interests, it can be explained as based on a norm of reciprocity or of social commitment. Most theoreticians explain reciprocity as a type of exchange act, created when a person considers himself to be in debt to another and committed to this obligation. Some sociologists stress equality as a prerequisite of an act regarded as reciprocal, since in their view the debt will always be paid back even if in the distant future. Both parties expect there to be repayment and that the value of the goods or services given in repayment will be the same as that of the object received, even if the repayment is delayed (see, for example, Malinowski 1922; Parsons 1951; Mauss 1954; Blau 1964; Gouldner 1973). Gouldner states that reciprocity is a universal norm, based on two basic principles: 1. People must help those who have helped them (1973:246). 2. People do not hurt those who have helped them (1973:242). He believes that the norm of reciprocity is universal and conditional. The nature of the reciprocity is affected by the quality and value of the article or services given, the extent of the recipient's need for what was received, and the motives of the donor (1973:243). In spite of its universality, the norm of reciprocity works differently in different cultures. Gouldner (1973:251) explains the need to ensure reciprocity as functional. He believes reciprocity ensures social stability


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and makes possible future social relations by giving the donor a feeling of security and a belief that is possible to enter into future transactions safely with the other party. It is a kind of perpetual motion starting with the first act of giving and continuing repeatedly with a reciprocal giving. Greenberg (1980:4) finds that on a basis of reciprocity, one can assume that the more the object given is considered of greater value than the recompense, the greater the recipient's feeling of discomfort and desire to reduce that feeling by seeking suitable opportunities to increase the value of the compensation. Yet the recipients' feeling of commitment and the extent to which they will seek to safeguard reciprocity depend primarily on the understanding of the donor's motives. Reciprocity will not satisfy both parties under all conditions. If the motive of the donor in making the original gift was to provide for the needs of the recipient rather than for his own needs, the recipient's feeling of commitment will be greater and, as a result, so will his desire to reciprocate. Greenberg believes that personal initiative is of the greatest importance and encourages reciprocity (1980:8). When the act of giving is organized in public and earns social recognition for the donor, the recipient is less inclined to reciprocate, because he feels that this recognition compensates the donor sufficiently. As we will see later in the chapter, this is also true in the case of organ donation, which is enabled only because society provided the cultural milieu that encouraged the donation and gratified the donors. The incentive to reciprocate does not derive from the need to reduce the feeling of commitment alone but also from the recipient's desire to return for more gifts in the future. Gouldner contends that if reciprocity were the only norm according to which people acted, many would remain without getting what they needed, whether an object or service, because they were unable to provide recompense (1973:261). He postulates, therefore, that an additional social norm, benevolence, exists (1973:266). This causes people to act without calculating what they received in the past for similar acts and what they stand to receive in the future in exchange for what they are giving. They simply "give something for nothing." While Gouldner tries to explain the limits of reciprocity by postulating that there is another social norm, most social anthropologists and sociologists have tried to resolve the problem by distinguishing among different types of gifts. They point out that there are gifts by individuals or groups without any social commitment to give them or to receive anything in exchange for them. As a rule, they call such unilateral giving a gift, but some give it different names (see Malinowski 1922:175; Mauss 1954:10; Sahlins 1965:147). Ekeh (1974:204) considers problems associated with the sociological concept that everything can be related to reciprocity. He ascribes these

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problems to the fact that most sociologists use an exchange model based on only two parties, instead of a dynamic model that may involve many participants. According to such a dynamic model, the recompense may be provided by some other person or factor and not by the recipient of the object or goods. He claims that focusing on two parties ignores these possibilities completely. Ekeh contends that one should examine social relations created in exchanges in the general social context and should bear in mind the distribution of resources within society. It is not enough to examine only the relations of two parties isolated from their general socio-cultural contexts. The general theme of relations constructed in the course of acts of exchange also applies to the special case of organ transplantation. This has been investigated by a number of sociological researchers (see, for example, Vernal and Packard 1990; Fox and Swazey 1992; Gerrand 1994; Sque and Payne 1994). They compared the donation of organs with giving presents and found a similarity; they also found similarity in the relations built up between the people involved in both types of acts. However, the system of relations in the donation of organs differs somewhat from the system of relations in other kinds of gift exchange as described in social anthropological and sociological literature. First, the giving and acceptance of gifts is, presumably, an act carried out face to face by the parties, and the object transferred is identified with the donor. In contrast, when an organ is transplanted, a medical team performs the actual transfer using a complicated medical procedure. Consequently, the donor family and the recipient never meet face to face. The interaction is restricted and exists first between the family of the deceased whose organ is donated and the first medical team that harvests the organ, and then between the second medical team that performs the organ transplantation and the patient who receives the organ. Hospital policies guard the anonymity of the donors and their families and prevent organ recipients from discovering the benefactors' identities and making contact with their families. Thus the transfer of the organ is neither personal nor made face to face; as far as the recipient is concerned, it is anonymous. Moreover, the consent to the organ transplantation comes from members of the family and not personally from the deceased (see also Lock 2002:318). Second, in the sense expected in other kinds of gift transaction according to theoretical literature, no reciprocity exists in the transplantation of organs. Fox and Swazey (1992), who base their approach on that of Mauss (1954), hold that there are three stages of social commitment in organ transplantation: 1. The commitment to give: with transplants from the living, there is often a family commitment to help the recipient, because there is maximum biological


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matching between the donor and the donee. In Fox and Swazey's view (1992:33-34), organ donations from the dead are inspired by conscience. Gerrand (1994), in contrast, does not see any reason why any living person should feel a commitment to donate his organs. Sque and Payne (1994) point out that even if it is correct that there is no such commitment, some individuals are prepared to donate because they consider it a noble deed and there is public pressure through the media to make such donations. In fact, 15-35 percent of the population in European and American countries display a readiness to donate organs by carrying a donor card, compared to a mere 4 percent in Israel. It would appear that the difference between Israel and the other countries derives from dissimilar attitudes to the commitment to give. 2. The commitment to receive the organ transplant: patients accepted by the hospital as candidates for organ transplants cannot refuse to accept an organ, because this would mean that they are unwilling to cooperate in endeavors to save their lives. Any candidate who does refuse to accept an organ will never again be accepted as a candidate for a transplant. Fox and Swazey (1992:35-38) hold that candidates for organ transplants may have many reasons for refusing to accept organs, especially from relatives, such as concern for the health of the volunteer donors. Nevertheless, throughout the whole period of my research, I did not encounter a single refusal by a candidate to accept an organ. On the contrary, patients were generally very eager to receive organs that would save them from death, regardless of the source of the organ. Sque and Payne (1994) add that there is not only a commitment to receive an organ; the families of the deceased who have agreed to donate the organ of a loved one not only expect it to be accepted but also hope that the transplantation will succeed and that the recipient will appreciate their act. 3. The commitment to make a return for the donation: Fox and Swazey (1992: 39-40) describe the feeling of obligation experienced by people who receive organ transplants and their frustration because of their inability to compensate the donor directly; they have no way of even expressing their gratitude. Gerrand (1994) explains that this inability is caused by the policy of many hospitals, which prevents any contact between the parties to the transaction. Gerrand is Australian, but this policy is followed by Israeli hospitals, too. Recipients also feel gratitude toward the medical system that mediated the transplantation, to the dead person from whose body the organ was taken but who remains insubstantial for the recipient, and to society for providing the cultural milieu that encourages the donation of organs. The recipients feel that, as they cannot express their gratitude directly to the donors and can never function as donors themselves, they will remain forever under an obligation that they will never be able to discharge. The gift in transplantation, namely the organ, goes through a number of mediators before it reaches its goal, the body of the recipient. The system of relations built up during this process is more complicated than its description in the theoretical literature. Separate systems of relations are created, on the one hand, between the donor's family, the mediator,

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and the medical team that harvests the organ; and, on the other hand, between the mediator, the medical team that performs the transplant operation, and the patient receiving the organ. These mediators, though they belong to the same system, have quite different functions. Together, they create a distance between the donor and the recipient and even prevent contact between them, something that never occurs when giving presents such as birthday or wedding gifts. From the aspect of reciprocity, the system of relations is very complicated. The nature of the relations can be defined as generalized reciprocity, where there is an understanding that the giving is based on a norm of reciprocity. This does not, however, release researchers from the need to examine the motives of the organ donors, the extent to which the norm of reciprocity exists in the act that makes the exchange possible, and the manner in which the exchange is executed in practice. THE METHODS OF IMPLEMENTING THE ACT OF EXCHANGE Many researchers treat the act of exchange as if carried out directly between those involved in the act. Their model is based on an act of exchange between two individuals in which an object is transferred from one party to the other, either as an act for which recompense is expected or as a gift without expectation of recompense. Although the most widely used model of exchange is that of two people, some researchers have recognized that exchange relations can include more than two participants (Levi-Strauss 1969; Ekeh 1974:53-56; Sahlins 1965:141). The implementation of the exchange depends on the socio-cultural context in which the parties to the exchange function. It also depends on the object exchanged and its worth. The way in which individuals classify objects from the cultural aspect will determine the measure of their value and the manner in which they are exchanged. Titmuss, when describing blood donations, treats this subject indirectly and points out that blood affects the deepest feelings of the individual concerning life and death, and that certain views and beliefs relating to blood influence the measure of its value (1970:15-16). Since blood touches on questions of life and death, it cannot be considered as a commodity to be traded independently between individuals. He goes on to state that experiences in dealing with blood affect the spirit of volunteerism and communal activity (1970:158-159). The method of exchange is mediated by the blood bank. Contributors give blood to a central storage pool. Titmuss indicates that the number of contributors is limited. Not everyone is accepted as a blood donor; children, the aged, the sick, "at risk" populations, and pregnant women are not accepted. Furthermore, some applicants are not accepted as recipients

Is Organ Transplantation a Gift Exchange? 69 of blood transfusions. Medical teams decide who can give and who can receive blood; they also mediate the transfusions. Nobody other than a doctor can make these decisions. Titmuss does not develop the discussion of blood exchange sufficiently. He points out that blood is culturally significant, but he does not try to link the process of exchange with the fact that what is being exchanged is, specifically, blood. His main aim is to deal with the social policies of countries regarding contributions of blood for transfusions. Because of this limited approach, his sociological theories about the process are inadequate. Although the blood donations he describes are similar to donations of organs for transplantation, there is a qualitative difference between the two. The exchange relations involved when organs are transplanted present a more complex picture than blood transfusions do. In contrast to blood, the organs that are transplanted are not given directly by the donor while alive. The agreement to donate the organs is negotiated by one medical team with the family of the deceased. The Israeli National Center for Transplants then regulates and controls the division of organs among medical centers. The medical teams that perform the organ transplantation affect the actual transfer to the recipients. Thus, there are in practice at least two medical teams mediating the exchange; one deals with the family and body of the deceased, and the other does the operation and deals with the recipient. The method of carrying out the organ exchange is portrayed in Figure 3.1. This system is not reciprocal, although there is an understanding of generalized reciprocity in the sense of there being a donor and a recipient and of giving and taking by them, respectively. The giving is always unilateral and takes place only once. Unlike blood donation, the donor can donate organs on only one occasion—his/her death. The recipient can participate in a similar act in the future only as a recipient. Only the mediators can participate frequently in similar acts in the future. The deceased owner of the organ enjoys no recompense, but the deceased's family does; they earn esteem and acquire a means to perpetuate the memory of their loved one. The doctors also add to their prestige through their mediation and may receive additional funds for research and other work. The transplantation of organs is also different from the transfusion of blood because there is none of the element of "pooling." Titmuss (1970) explains a system of exchange based on a store of blood resources, even if temporary, to which some individuals contribute and from which other individuals receive. There are similar types of banks in which skin and sperm are stored. In the model of an organ exchange, there is a register of names of potential donors but not of the objects—the organs—to be exchanged. There is a waiting list of candidates, and when the medical

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Regulated and Controlled by National Center for Transplants

MT1 D

•FD

* MH^—

•

Rl

+ MT2

•

R2

MT3

•

R3

D (Donor—Deceased) FD (Family of Donor) MH (Medical Team—Harvesting) MT (Medical Team—Transplanting) R (Recipient) Figure 3.1. Method of carrying out the organ exchange.

team finds a potential donor, a committee of the Israeli National Center for Transplants decides who is to gain from the donation. Fox and Swazey (1992:74-83), describing the complexity of the distribution of organs among those waiting for transplants, point out that since there is a shortage of organs available for transplantation, organs have become a rare resource. The shortage of organs is worldwide and is the consequence of the technological developments in the field of transplantation that increase transplant success and thereby the demand for organ transplants (Marshall et al. 1996; Scheper-Huges 2000). The rarity of organs also arises from centers' dependence on the readiness of members of society to donate the organs of their deceased loved ones, and because not every deceased body is biologically suitable to provide organs for donation. Hogle (1995) notes that a professional transplant would not use old organs or organs suspected of harboring risk. In other words, not everyone can give and not everyone can receive. Before deciding who should receive the resources, the medical group responsible for their distribution has to cope not only with the medical

Is Organ Transplantation a Gift Exchange? 71 questions involved but also with moral and social challenges. These include the questions of to whom the organ belongs from the moment it is taken out of the cadaver, how to ensure justice in the distribution of the organs, whether foreigners are eligible to receive organs, and whether a person should be allowed to receive more than one organ at the same time. These issues framed the policies of organ-transplantation centers and determined the way in which the transplantations were transacted. In addition, in this system of exchange there is the very important function of the mediators—the medical teams. They determine who will participate in the exchange, what will be exchanged, when the exchange will take place, and under what conditions it will be effected. Their decision is made with the expectation of recompense, as in every system of exchange. The mediators in the organ transplantation also implement the exchange. The literature on the subject treats the mediators' status as marginal and pays little attention to them. This theoretical discussion of organ transplantation leads to a number of conclusions. First, examinations of the system of exchange that concentrate on only one part of the phenomenon produce shallow explanations, for every system of exchange is based on relations between two or more parties who transfer an object directly from one to the other. The transfer of the object creates a system of relations, which defines the object culturally, determines its value, and makes possible its transfer from one owner to another. The system of relations and the act of exchange take place within a socio-cultural context and are inseparable parts of it. As a result, the social structure and the cultural system play decisive roles in determining how the exchange is carried out. The fact that many researchers have focused on only one aspect in their research led Emerson to maintain that theories of exchange should not be regarded as such, but as references to the transfer of things of value through a prism of social processes. He claims (1976:359) that an attempt is made to explain social processes by analyzing the acts of individuals and adopting the decisions of individuals, instead of concentrating on exchange relations as the framework for the analysis. However, Emerson fails to solve all the problems involved in the interpretation of organ transplantation because he, too, focuses on only one aspect of the act of exchange. He suggests analyzing the act of exchange from the macro-sociological point of view and not from the micro-sociological level. The act of exchange in which individuals are involved is shaped by the way those individuals make decisions and act. Their acts do not arise from a void and are not carried out in a vacuum. They are the outcome of socio-cultural concepts that the individuals concerned have internalized. In other words, the microsociological level of analysis should not be separated from the macrosociological; the two levels should complement each other. This first

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conclusion leads to a second. Sociological discussion of exchange is incomplete when it deals with conditions in which there is apparently only giving and it is difficult to determine the value of the object that passes from one person to another. The theoretical literature focuses mainly on a system of relations in which only two parties are involved and less on exchanges in which there are many participants. It treats the parties as if they operated in isolation and not in a socio-cultural system. The fact that often a mediator helps certain exchange relations to function does not receive enough attention. Researchers recognize the existence of mediators but do not deal with their social task and the significance that emanates from their participation in the exchange. The common assumption that the exchange system is based on a certain measure of reciprocity causes additional problems. This assumption takes the discussion into unilateral or apparently unilateral exchange conditions and ultimately into a deadlock. The explanations proffered in the literature return to the assumption that there is a social norm of generalized reciprocity. The contention is that there can be no such thing as unilateral giving. In cases where there is clearly no reciprocity, some theoreticians feel compelled to propose altruism to explain the behavior. While psychologists continue to seek the source of altruistic behavior, sociologists end their discussions at this point. To examine and understand altruistic social acts in depth, one must try to interpret the motives of the individual responsible for such acts by referring to the outcome, or the actual behavior. In seeking a theoretical framework for altruistic behavior, it is worth considering Simmel's line of thought that all human relations are based on exchange relations. The exchange relations and the interaction between individuals emerge from ascertaining the interest of the parties in participating in the transaction. Sometimes these interests are the outcome of economic motives, while at other times they are caused by the need to meet other human needs. Geertz (1973) seems to be justified in seeing man as a creature who creates meanings and symbols (homo symbolicus). Even when people are occupied in exchange relations, these are essentially symbolic relations primarily involving exchanges of meanings. The theoretical distinction between the rational individual and the social, cultural person that many researchers try to demonstrate is refuted, basically because the rationality of the individual is shaped socially and culturally. Titmuss (1970:212) holds that the theories of exchange in studies of social anthropology and sociology ignore a broad field of performance and behavior involved in the giving of presents, in both personal and impersonal frameworks. He claims that these theories can only explain the transfer of material objects assigned an economic value with expectation of recompense. He concludes, therefore, that the theories of exchange that he criticizes cannot explain acts of exchange such as the contribution


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of blood. If we concede his point, it is manifestly more difficult to apply these theories to the donation of organs for transplantation. Transplantation emerges as a unique social act that shows the limitations of accepted theories of exchange. Yet there is no doubt that in organ transplantation an act of exchange does take place, in which organs are transferred from one person to the possession of another individual. In fact, two systems of exchange are present in organ transplantation. The transfer of the organ is one system, and through this another abstract system of exchange is made possible. The second system is between the abstract concepts of life and death. In it, the organs of the deceased become a socio-cultural resource because the transfer makes possible the exchange of life for death. In order to understand the meaning of this transference, we must first understand the social attitudes to life, death, and the significance of the body. On the one hand, these perceptions are the outcome of the experience of individuals in specific situations; on the other hand, they are socio-cultural insights that are internalized in the general process of socialization. The following section attempts to clarify the quality of the system of exchange that exists in organ transplantation by examining socio-cultural perceptions of the body and death, and by investigating individual attitudes toward the body. The section reviews the system of exchange in organ transplantation in light of these insights. AN INFORMATION DAY ON ORGAN TRANSPLANTS FOR STUDENTS AT TEL-AVIV UNIVERSITY For the most part, the system of exchange in organ transplantation is carried out behind closed doors, and the thoughts of the participants are not expressed publicly. However, some participants do describe their experiences and ideas at conferences and other meetings that are organized periodically. Only on such occasions do doctors and other medical personnel involved in organ transplantation, recipients of transplanted organs, and members of donor families meet. Such events provide good, if rare, opportunities for profound discussion of the exchange between death and life that takes place within the framework of organ transplantation. I attended one such occasion: a day devoted to explaining to the students of Tel Aviv University why it is essential in a caring, humane society to donate organs for transplantation. The University Student Council organized this session. In the course of the meeting, participants expressed their weltanschauungen and discussed their definitions of clinical and brain death. They also presented their ideas about the body as a totality of organs, and the connection between the living body and death. The issues raised during this organ-transplant information day were important because they

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defined the philosophies of the candidates for transplants, the recipients, the donors, and the medical teams in the context of life and death. It was promoted as a typical study day for students. Placards were distributed throughout the campus, and stickers were placed on cars. The message carried by these placards and stickers was, "Don't take your organs to heaven. Heaven knows we need them here!" Two booths were erected where students could sign donor cards, certifying that these signatories were prepared to donate their organs after their deaths. At noon, an event called "At Midday" was held in the university hall adjoining the social sciences building, which was frequently used for conferences, lectures, and study days. Events taking place in the hall generally attract packed houses, but on the information day on organ transplants the hall was only half full. The facilitator was Rafi Reshef, one of Israel's leading radio and television personalities, very well known for conducting talk shows with important themes. He sat at a table covered with a green cloth, on which were placed a jug of water, glasses, and a microphone. The first person Reshef invited to the platform to address the gathering was Haim Ramon, minister of health at that time. Ramon did so to the accompaniment of vigorous applause and addressed his listeners with the words "I know that the subject we are discussing today may seem rather remote to most of you sitting here. It is, however, more urgent than you realize. The need for donated organs in great numbers has already come." Reshef said, "In Israel there are hundreds of people waiting for organ transplants. What hope is there of increasing the public's awareness of the urgency of the need for donations? What can we do to shorten the queues of those waiting for organs to save their lives?" Ramon replied, "When I began to serve as minister of health, the situation was not encouraging. We decided to learn what other countries were doing about organs and adopt the same policy. Hence, we have decided to establish a national council to regulate and centralize all activities connected to organ transplantation. Representatives of the Ministry of Health and of the main centers dealing with transplantation—the Sheba, Hadassah, and Beilinson medical centers—will serve on it together with lay representatives of Israelis who have had heart transplants and with representatives of the Association of Cystic Fibrosis Patients in Israel. Unfortunately, cystic fibrosis results in considerable demand for transplants of lungs and hearts. The new council will determine the rules to apply to organ transplantation, and it will supervise the activities of the Israeli National Center for Transplants. It will determine priorities according to scientific criteria. The council will also check hospitals' efficiency, to prevent the performance of unnecessary operations aimed at acquiring organs. The ministry of health will accompany the establishment of this council with a public campaign to promote awareness of the


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need for organs. In this context, I wish to congratulate the students' association, which has worked in cooperation with the Israeli National Center for Transplants to organize this event to heighten such awareness. I hope that we shall increase the number of organs donated in Israel significantly by means of events like today's. I am very pleased with what has been achieved here today. Students sat together with the doctors. They set up a table, to which people came and signed agreements to donate their organs posthumously. Moreover, this was only a local effort arranged within a very short time. Already, as far as I know, hundreds of students throughout the university have signed the forms. Efforts like this have not been made before. I realize that such events will not become daily occurrences, but they can be organized from time to time to increase awareness. We must realize that every single organ transplant means saving a life. There are people sitting among us who underwent heart transplants several years ago and who have lived with their new hearts ever since. I have to add a rather sordid note. Improved organ transplantation in Israel would not only save lives; it would also save money. For Israelis to go abroad to get an organ transplant costs a fortune. I am not talking only about the family, but about the national economy. It harms the national economy. We have the skilled physicians and technical resources here, so why not use them? All that is lacking are the organs. I believe that a national organization will help us get them!" The second speaker was a mother of four children, three of whom had fallen ill with cystic fibrosis and died. She was a full-figured woman in her mid-fifties, with short brown hair. She went up onto the platform, sat down, and without waiting for an introduction began to relate what had happened to her family, as if she knew from her previous experiences what was expected of her. She ended her speech by saying, "At the time my son needed transplantation, no heart-lung transplants were being done in Israel. It is true that there has been a lot of progress in the past year and that the position has improved considerably compared with five years ago. Nevertheless, there are still not enough organs available in Israel to meet the need. In Israel, we have good doctors. Many of them specialized in transplantation abroad, and they can do the operations. But awareness of the need for organs is lacking." The next speaker was a young mother who approached the platform with faltering steps. (I will refer to her as A.) Her son had died of a brain hemorrhage and she had donated his organs. Reshef asked her, "Your son was fifteen years old when he died, wasn't he?" A: "Yes." Reshef: "What caused his death?"

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A: "A sudden hemorrhage in the brain. He died very suddenly. He did not suffer much." Reshef: "He had already been taken to the hospital and was in a state of what is called 'clinical death'? This is precisely a case where the family could help to make longer life possible for other people by donating the organs of your son. Do you remember when they first asked you to donate the organs? H o w did they approach you?" A: "He stopped living in the evening. He was already dead. In the morning, a team of doctors talked to my husband and me. They explained the position in detail and then asked if we would be prepared to donate the organs to save other people in need. One of our daughters was with us. Everyone in the family had already agreed in principle before they spoke to us that we would donate the organs." Reshef: "Did you raise any difficulties? Did you hesitate or did you agree immediately?" A: " N o . It was clear to us that we should agree. According to my understanding, sometimes people find it difficult to decide to donate organs because of their fears based on superstitions and their belief that the body is something precious. However, such people inhabit a world that people like us don't know. For us the alternatives are clear; either a decision to save the life of another person or a refusal because that would be simple. I don't think there is any real alternative but to agree." Reshef: "You and your husband included your daughters in making the decision, and you all agreed. Did you consult anyone else?" A: "The only mistake we made was that not all our daughters were with us in the room when the doctors spoke to us; they were in the waiting room. We didn't think the matter through and didn't call them in to join in the discussion. However, they had already agreed in principle to the donation and they accepted the decision without question." Reshef: "Do you know exactly what organs they took from your son for transplants?" A: "Yes. The liver, two kidneys, and the pancreas." Reshef: " D o you have any idea who received the organs?" A: " O n that very day and also later, of course, there were articles in the newspaper that revealed that the liver went to an Arab woman, one kidney and the pancreas to a man in Jerusalem, and the second kidney to another person in Jerusalem." Reshef: "Did any of these recipients try to contact you?" A: " N o . " She laughed, as if she were embarrassed. Reshef: "Weren't you interested at all? Didn't you try to contact them?" A: "I believe that a donation is a donation, and that it is healthier and better not to make contact with the recipients, who should be left to get on with their lives."


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Reshef: "Do you have any feeling at a spiritual level, I don't quite know how to put it, that somehow your son's soul endures in another person, that in some way part of him is still alive?" A: "Certainly we feel that a great part of him continues to live. In addition, he lives on in the minds of the people who knew him. He was well known both in our neighborhood and at his school, and everywhere he went. Now, when I go to the cemetery and stand beside his grave, I don't really think about his body or what parts of it are in his grave and what are not. I think of the child that I loved so much. It's a good feeling to know that some parts of him were donated to save others. Even an event like this information day seems to me to be a continuation of our contribution to keeping him alive." The next guest speaker was a heart transplantee. Yochanan was a man of sixty-two with a slight physique and thinning hair that was turning gray. He spoke Hebrew with a foreign accent. Reshef: "Shalom, Yochanan. You are the most optimistic of the three people whom I have interviewed so far. It was because of people like you that this gathering was arranged. You were a healthy man until March 1990, weren't you?" Yochanan: "Yes. I was a European athletics champion." He took a photograph out of his pocket and gave it to Reshef. Reshef: "Would you like me to pass this photograph around the hall?" A burst of laughter from the audience followed this question. Yochanan: "Before you do so, with your permission I want to thank my doctors. We Israelis have doctors who are ranked among the highest internationally. They have hands made, not of gold, but of platinum. The whole medical team, who prolonged my life, was excellent." Reshef: "With your permission, let us go back to March 1990. What happened to you then?" Yochanan: "On March 1990, at 1:30 in the morning, I woke up feeling that I had to pass water. I got up and did so. I returned to my bed but couldn't go back to sleep. I felt pains in my chest. Then the pains spread to my hands and then to my whole body. I asked my wife to get me an aspirin. I took the aspirin. It helped, but I still had some chest pain. I did not realize that something was wrong with my heart. I had never had heart trouble before. Then, after about ten to fifteen minutes, the pain abated, and I began to sweat. At the same time, I felt cold. I drank some coffee with milk. It did not help. My wife wanted to order an ambulance to take me to the nearest emergency department. I refused but did agree to drive myself to the hospital in the company car that I was using. We drove to the hospital. When we got there I was examined in the emergency department."

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Organ Donation and Transplantation Reshef: "They found that you had had a heart attack. After that, over a short space of time, you had a series of heart attacks, didn't you?" Yochanan: "Yes, the doctors found that I had had a 16 percent myocardial infarct." Reshef: "They treated you in the conventional way for your heart condition, didn't they?" Yochanan: "Yes, but I did not get better. I had heard about heart transplants saving people with heart disease. So I talked about getting a transplant with the doctors." Reshef: "They asked you why you wanted a transplant and told you that it was not a simple operation, and warned you that there was not much chance of getting a donation of a suitable heart." Yochanan: "I said to them, 'Look! I'm ready to try anything.' I was determined to get a transplant. Eventually the coordinator and the doctor said, 'All right, we're putting you on the list of candidates. We'll call you when there is a donor.'" Reshef: "After that you waited for seven months?" Yochanan: "It was longer. Ten months." Reshef: "And then, at last the call came for which you had been waiting so impatiently, and you rushed to the hospital and had the operation." Yochanan: "Yes." Reshef: "By the way, do you know who the donor was?" Yochanan: " N o , I don't. I wanted to know but they wouldn't tell me." Reshef: "Was it important for you to know?" Yochanan: "Yes. The man whose heart was donated to me gave me life! Of course I wanted to meet his family, but the hospital would not agree. I wrote a letter of thanks, which I think was passed on to them. However, they remained anonymous. Every month, on the day of the month that I got the heart, I think of these people with gratitude. In my opinion, everyone should be like them, prepared to give life to others in need!" Reshef: " H o w long did it take you to recover from the operation?" Yochanan: "The transplant was done in the summer of 1991. Today I can walk. I can run. I do gymnastics. I go up and down stairs."

Reshef then invited to the platform two physicians who performed organ transplantation, Professor Zaki Shapira from Rabin Medical Center and Dr. Eli Katz from Hadassah Medical Center. Reshef: "Let's devote a moment to trying to understand the position of a potential donor of organs. If I understand the position correctly, only somebody who has suffered what is called clinical death can become a donor." Dr. Katz: "I must correct you. I don't use the term clinical death because it is unclear. What we are talking about is a condition defined as 'brain


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death.' That is, a person whose brain has been destroyed at all levels, completely and irreversibly. Today determining brain death is not a gray area, where clarification is necessary to know whether a person is 'perhaps dead' or 'almost dead.' There are unambiguous, precise, essential, irrevocable criteria that we use to define a person as dead." Reshef: "How many such potential donors are there in Israel in a year?" Dr. Katz: "That is a very important question; it is linked to the proposal to form this new organization. If we use the statistical approach adopted in Western countries showing how many potential donors there are among every million people, we arrive at figures for Israel of between 140 and 240 possible donors per year. These are people that we know about today. There are probably many more potential donors not included in those statistics, in the Ashkelon, Eilat, Afula, Safed, and other hospitals, where they don't do transplants. If we had a proper administrative system operating throughout the country, we could probably reach another 150 to 200 donors." Reshef: "So you're saying that there are dozens of people who need transplants and are not getting them, because not all the potential donors are approached?" Dr. Katz: "Exactly. Let us suppose that we reach a stage that the families of 40 to 50 percent of people who die are willing to donate organs that could save others. We should then reach a situation where fifty to sixty heart transplants, and double that number of kidney and lung transplants, could be performed annually in Israel. But, if we look at the statistics of what is actually happening in the Beilinson and Hadassah medical centers, we find that there are three, four, or at most six heart transplants and about eighteen liver transplants in each hospital every year. This represents a great gap between the actual transplants and the number that should be done. There is no logical reason whatsoever why we should be so different from the countries in western Europe and the United States concerning transplants. We have the same incidence of deaths in road accidents, or perhaps even higher; the same incidence of brain hemorrhages. We have a much higher incidence of deaths in war or similar phenomena. Thus, there is no doubt that we should be able to supply the organ transplant needs of the population. This brings us to the vital element of educating the public, so that the whole population understands the national needs. I know that everyone here today will go home and will discuss what they have heard here with all their family and tell them how important it is to apply the information learned today. We must reach a situation where every Israeli family knows how to react when afflicted with some disaster. Judging from the experience in the rest of the world, I am almost sure that the percentage of Israeli families who will agree to become donors will rise until we have solved the problem of the shortage of organs available in Israel."

80 Organ Donation and Transplantation Professor Shapira: "Some members of the audience may have received the impression that organ transplantation has been introduced into Israel only very recently. The truth is that we have been performing organ transplantations since 1972 and, as a result, we have transplanted 1,900 kidneys into 1,900 people. Nevertheless, there is a huge problem. The gap between the demand for organs and the supply is a national problem. We don't restrict organ transplants to our own nationals. At our present organ transplantation center, we know of everybody who has died and is a potential donor at every one of the twenty-two hospitals in the country. To our sorrow, there are many accidents in Israel, resulting in about two potential donors every day, but the number of agreements by families to donate organs is low. This poor showing is not caused by lack of awareness. Awareness has increased considerably in recent years, owing to promotions like the present event. The truth is that, when we come to a family of a deceased to ask for a donation of his organs, they know exactly what we want but they don't always agree. Moreover, the Adi card that some of you signed today and that deceased persons may have signed in their lifetime, does not necessarily help. Even though, by law, we may take the organs from a deceased person who signed an Adi card before death, in practice we are not allowed to act on this if a member of the family objects. If we insisted on acting according to the letter of the law, we would run the risk of a scandal in the media." Reshef: "Just a moment. You said before that there are 140 to 240 potential donors a year." Professor Shapira: "You must include the number killed in road accidents every year. Eli Katz was referring to the number of potential donors according to medical criteria." Reshef: "Let's limit ourselves to talking only about them." Professor Shapira: "Okay. Two hundred forty potential donors. That gives you 480 kidneys, which is more than we need now." Dr. Katz: "That is precisely the point. I say that we need today sixty hearts, sixty livers, and 120 kidneys, and we don't have them. If 40 to 50 percent of families of victims, under today's conditions, agreed to donate organs, we would have enough for our needs, without any increase in the number of deceased people who could be donors." Reshef thanked the doctors and asked the audience for questions. Then he thanked the doctors again for their contribution and the audience for coming. The audience dispersed. The transcript of this information day on organ transplants contains the essence of the points of view of most participants in organ transplants. The emphasis was placed at first on the fact that a special process of exchange was taking place.


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There are donors and there are recipients. The donation is a contribution that appears to be one-sided. However, there are some forms of recompense both at the personal level and at that of society as a whole. One recipient described what he had gained apart from life itself: he could walk, he could run, he could do gymnastics, and so on. This feeling of gain goes together with his feeling of being under obligation to the donating family, although he does not know them personally. The donating mother describes what she has gained by the perpetuation of her son's memory: "A great part of him continues to live." The minister of health, presenting the policy of the ministry, treats the body and its organs as national resources. "It affects the national economy," he says, and the doctors accepting his point of view express their mathematical and economic way of thinking about the body. The next two chapters of this book discuss these attitudes more profoundly. They discuss and describe acts of all the participants in the complex exchange that characterizes organ transplantation.


Lliapler 4

The Body in Organ Transplantation This chapter seeks to throw light on the way organ-transplant participants socially and culturally perceive the body as both a personal and a social entity. The theoretical discussion of the body deals with its social interpretation by participants in discussions of organ transplantation. The distinctions that these participants make between the personal body and the "self," and between the personal body and the social body, are similar to those that one finds in anthropological and sociological analyses. The following section attempts to explain social perceptions of the body and is based on Douglas ([1966] 1984, [1970] 1982), who dealt with the existence of these two bodies. Douglas explains that the human body provides the ideal code for classification, for the body is natural and ubiquitous, and self-awareness encourages images of the body that are examples of order and disorder. She used the idea that the body could provide an example of a social system and explain different cultural phenomena. The concept of the body as an example of social and political order is widespread among sociologists, as is the distinction between the personal body and the social body. However, it is also essential to understand how the participants in organ transplants perceive this. To transplant organs we must define the body and its parts. The perceptions of the people involved in the action are derived from social conceptions about the body and, at the same time, define this way of thinking. The body is central in every text that deals with the transplant of organs. At the same time, each group involved in the transaction relates to the body in a different manner, in accordance with its role, its status

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in the social system in general, and its position in the action of the transplant in particular. These attitudes are anchored in the modern sociocultural concepts of the body. The significance of the personal body to the individual and its relation to the social body are the outcome of the individual's personal experience in symbolic interaction with others. Kroker and Kroker (1987:20) point out that the body in our society seems to have become amorphous, with undefined boundaries. The fact that today it is possible to perform organ-transplant operations contributes to the difficulty in defining the boundaries of the body. Haraway (1991:151-154) contends that the boundaries of the body today are obscure and that the borders between human beings and animals or between human beings and machines have become blurred. In this connection, Shilling (1993:4) points out that operations such as organ transplants threaten to break down the boundaries that have traditionally existed between one body and another and between the body and technology. When one talks with the various participants in an organ transplant about what the body means to them, one realizes that there are considerable variations in their perceptions of the body. Every participant in the transplant transaction reveals in words and actions a relation both to the human body and to the social body, a relation they call "society." In a discussion with the transplant coordinator of a hospital's transplant department, she explained that the hospital policy was to guard the anonymity of organ donors, but that recipients of organs were exposed to the media and could be interviewed by anyone who wanted to discuss their transplant operations with them. The coordinator said, "Those recipients of organ transplants owe everything to society, while society owes everything to the donor families." Phrases like "to give to society" and "to receive from society" constantly appear in discussions about organ transplants; these expressions reveal not only social thinking about exchange, but also perceptions that a social body exists from which somebody receives and to which somebody else gives. Anthropologists and sociologists persist in discussing "the social body," although it is not at all certain that those who concern themselves with society conceive it in the form of a body. In addition to the distinction between the social body and the organic body, discussions about organ transplants distinguish between the body as a tangible, material thing (or, as sociological theorists put it, as "embodiment") and the abstract, even philosophical, relation to the two dimensions of the body. These dimensions are demonstrated in Figure 4 . 1 . Even though everyone connected with the phenomenon of organ transplant relates both to the "personal body" and to the "social body," they do so in various ways. The recipients of organ transplants and the medical establishment relate to "personal body" and to "social body"

The Body in Organ Transplantation 85 THE BODY

Personal Body

Concrete

Abstract

Social Body

Concrete

Abstract

Figure 4.1. Distinction between personal body and social body in discussions of organ transplant according to participants.

identically, because the action of organ transplant is only possible if there is complete cooperation and an instrumental interaction between them. In contrast, the broad social comprehension expressed in the media and understood by the donor families is different; they differentiate between the two kinds of bodies, as will be demonstrated later. As already mentioned, social comprehension of the body is anchored in general socio-cultural perceptions. Thus, anthropological-sociological discussion can contribute to understanding the words and actions of organ-transplant participants. Further examination of how the participants discuss organ transplants will extend the limits of anthropologicalsociological discussion of the body. It seems that examining the body in the context of the organ transplants will throw a different light on the significance of the body in Israeli society in particular and modern human society in general. The way the body is defined in physical and social points of view differs according to culture and period. The word body has a wide range of meanings and realities. Synnott summarizes the changes that have occurred during different historical periods in perceptions of the body, its limits, its significance, and its moral and symbolic values. He shows how the social perception of the body has changed from that of a temple to that of a machine. Similarly, the concept that there is a separation between the body and the soul has been replaced by the conviction that the body and the self are one (1993:7-37). In our modern society, with its scientific and medical advances, mechanical and technological advances have affected ideas about the body (Synnott 1993:34). The body is no longer considered something firm and unchangeable, given to mankind from God. It is now regarded as moldable, something that can be fashioned anew.

86 Organ Donation and Transplantation Modern societies also believe that the body can be bionic (Synnott 1993:34). Parts of the body, such as knees and breasts, can be replaced by artificial creations, while pacemakers can be implanted in the heart. These mechanizations make it possible for some people to go on living. Furthermore, hearts, lungs, livers, kidneys, pancreas glands, corneas, and bone marrow can be transplanted from one body to another. Hospitals are changing and becoming increasingly like engineering workshops where bodies are brought for repair or removal of some defective part and replaced with a new part in perfect working order. These social ideas and experiences have influenced and reshaped anthropological and sociological thinking about the body. Nevertheless, for sociologists the body serves only as an illustration to help them understand other problems (Berthelot 1991:391-399). There seems to be broad agreement among sociologists that for many years the body's status was "present absent" in sociological theory. They did not consider the body in itself a subject for investigation, but did examine some of its different aspects, such as language and consciousness, or they treated it as one of the elements that enabled social institutions to exist (Shilling 1993:19). Classical sociologists intentionally disregarded the physical body because they were interested macroscopically in social reality, social structures, and social order. The fact that they envisaged individuals merely as parts of society and not as objects suitable for investigation in their own rights kept them from focusing on the body (in this connection, see Turner 1991:6-9; Shilling 1993:26-27). However, the classical sociologists' lack of interest in the body was not absolute. From a historical point of view, the body was always present in fact, although it was absent from sociology. While sociology did not often deal explicitly with the body, it did examine aspects of embodiment and their projections. Since people's bodies were considered their natural and personal property, bodies were treated as outside the legitimate concern of society. According to Shilling (1993:19), it was only when surrounding society began to wonder about the significance of the separation between society and the body that the body became a central concern for sociology. But Turner (1991:19) points out that sociological interest in the body began to crystallize to an essentially functionalist^ approach that referred to society in terms of its similarity to the body. It was anthropologists, particularly physical anthropologists, who pioneered interest in the body and provided the early direction taken by anthropology (see Blacking 1977; Turner 1991). They measured and compared parts of the bodies and skeletons of individuals in different societies; they raised broad questions about the nature of mankind to unravel the enigmas of social relativism. Mauss ([1934) 1973) was the first to outline a systematic, anthropological method for studying the body. He wrote about the techniques of

The Body in Organ Transplantation 87 the body and made it clear that when using the word technique, he meant the ways in which people in every society know how to make use of their bodies. The body is a human being's primary and most natural instrument. Social anthropologists' and sociologists' preoccupation with the body increased at the end of the 1960s and the beginning of the 1970s, when it became the focus of interest as a system of symbols and not merely as an object for measurement, as in physical anthropology. In the 1970s, anthropological study of the body developed further to deal with feelings and non-verbal communications. In the 1980s and 1990s, studies that had previously focused on cultural variations of the body reverted to studies of the physical experience of the individual. Although it was clear to the social anthropologists that bodily activity began in the organism, their interest turned to processes and cultural products that penetrated, spread, and broadened the view of the body in the contexts of social interaction and social devices. The great upswing of anthropological interest in the body in the 1970s and 1980s meant that anthropologists began to concentrate on a number of subjects. They raised queries about what the body really was—whether, on the whole, it was only the organs that composed it or whether it had some other, greater significance. Anthropology also deals with cultural differences of bodily processes such as sweating, blushing, weeping, and laughing and the cultural explanations that society gives to bodily excretions such as sweat, saliva, tears, and urine. Of course, anthropological study of the body also deals with relations between the body and fundamental socio-cultural activities, such as relations between health and gender or politics and religion (Csordas 1994:3-5). From the middle of the 1980s, sociologists, too, have displayed growing interest in the body and begun to publish their studies about it at an increasing rate (see Turner 1984; Featherstone et al. 1991; Shilling 1993; Synnott 1993). Without a doubt, they have been influenced by the public's preoccupation with the body as expressed in press reports and on television. Almost every newspaper and magazine and many television and radio programs carry articles about the body in sickness and health. No doubt influenced by this preoccupation, current social-anthropological and sociological theory emphasizes that such body concepts can be regarded as the product of social structuralization. Individuals internalize these mental images by means of the social interactions that they have with their own bodies and those of others. Goffman (1963, 1969) presents this in his three-way approach to the body: the body as a physical object in the possession of an individual, the body in its social meaning having symbolic significance, and the body as an intermediary in social relations between personal identity and social identity (Shilling 1993:82-83).

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Perceptions of the body by individuals in society are thus structured by society and its culture. The studies of Foucault (1979, 1980, 1990) have greatly influenced sociological thinking about the body. He believes that the body not only acquires meaning by being talked about but is also structured by this. According to Foucault, from the moment when the "art of the human body was born," policies of repairing it have been automatically created. If the body is a product of social structuralization, then different societies and classes will organize it differently, according to their social thinking. Moving on from these views, Bourdieu (1984, 1986) applied Marxist concepts to all aspects of the body, class, and capitalist culture. He examines how the body becomes a commodity in modern society in the sense of what he calls "physical capital." This physical capital is realized in work, in leisure, and in other areas of economic endeavor, where it produces money, services, or goods. It also produces social capital such as social networks and cultural capital such as education. In Shilling's opinion (1993:128), Bourdieu made an important contribution to sociological thought on the subject of the body, although he did not consider Bourdieu's work as a part of sociological theory of the body. T w o important, basic concepts, namely the perception that the body is socially structuralized and the fact that this structuralization is made by interactive processes, gave rise to discussion among researchers about the way that individuals in society classify all that affects their bodies and their bodies' surroundings. Social-anthropological and sociological theories focus on three issues. One is the separation of the personal body from the self, a second is the distinction between the individual and the personal body within society, and the third is the division between the personal body and the social body. Structural theory also clarifies the dichotomy of nature and culture, of biology and society, of sex and gender, of object and subject, of rational and emotional, and so on. However, since this monograph deals with organ transplantation, it focuses on the three sets mentioned above. The first school of thought identified separation of the personal body from the self, first distinguished by Goffman (1963). Following his approach, Turner (1984:32), who perceived a dichotomy of body and soul, pointed out that although the body was impermanent, the self continued by virtue of memory and consciousness. Giddens (1991) explains that the body is both an object and a source of feelings and pleasure, of pain and illness. However, it is not only a physical object, but it also serves as a means for daily activity and interaction with others. It enables the self to exist by means of the image it presents (what Goffman calls "the presentation of the self"), and also by means of its behavior toward others. Similarly, the body's sensitivity dictates to the self its reaction to pain and to pleasure. Furthermore, the


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need to eat in order to live dictates eating habits (1991:99). Comprehension of self and body and the internalization of this comprehension become possible only through a person's daily experience of contact with others. Giddens stresses, however, that most people feel that the self is inseparable from the body. A second school of thought dealt with the distinction between the individual self and the social self, based on the discussion of individualism. Elias ([1939] 1978, [1939] 1982) explained how people related to their bodies and clarified the significances that individuals assigned to their bodies during different historical periods. The second school of thought sees the individual as a development of the self that can stand on its own and is structured by society. According to Dumont (1986), when relating to people as individuals, one treats them simultaneously in two opposing ways. On one hand, one treats them as independent and self-reliant objects that are therefore nonsocial. On the other hand, one also relates to them as assets having desires and thoughts, who can express their social thinking and make contact with others and therefore are social and thus of value to society. A third school of thought dealt with the distinction between the personal body and the social body (what Csordas [1994:95] called "the multiple body"). The disciples of this school emphasized the social structuring of the body, and in Csordas' cynical opinion, the number of bodies to which they referred depended on the number of aspects of the body that they chose to display. Douglas ([1966] 1984, [1970] 1982) was a pioneer in this area and referred to the existence of two bodies—the human body and the social body. In her book Purity and Danger (1966 [1984]:115), she suggested that the human body was "a source of symbols for other complex structures." The body, in her opinion, is a complete and comprehensive structure in which all the different parts are interlinked, but each having a specific function. It can constitute, therefore, a model for other complex structures. In her book Natural Symbols (1970 [1982]:65-81), she develops this idea, further explaining that there are two bodies: the self and society. Sometimes they are so similar that they almost merge, but at other times they are completely unlike and distinct, and considerable tension may develop between them. The social body dictates the perception of the physical body, and generally known and accepted social categories shape its physical background. Every natural symbol that originates in the body has social significance; hence the body is associated with the social structure. Scheper-Huges and Lock (1987) considered three types of body: (1) the individual body, as a person experiences it in daily life; (2) the social body, which typifies the connection between society, nature, and culture; and (3) the political body, which is the consequence of social and political control. They examine the body in relation to sickness and

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suffering and show that the body and soul are inseparable. Turner (1984) and Frank (1991b) relate separately to four dimensions of the body and present models characteristic of the body. Turner (1984:2) creates an integrated system of these types of personal body and the type of society in which they exist, something that Douglas only hinted at. The principle underlying Turner's model derives from Thomas Hobbes's ideas about the necessity to create and maintain social order. Turner has a social outlook, in which all societies want to create social stability. He contends that a distinction must be made between the social need to regulate the actions of the population and the personal need to control the body. He also distinguishes between the inner body as an environment and the outer body, with which individuals present themselves to society (1984:91). Turner thus puts forward a model based on the dichotomy of a group (or society) and the body (or personal body), and the dichotomy of the outer and inner bodies. He adds two extra dimensions: space and time. Turner, in fact, makes use of Douglas's distinction between the personal body and the social body, without acknowledging this. His model does not consider the dead body at all, only the living one, for very clear reasons. His is a model of a social body and a personal body, which have to confront the need for continuity in space and time. Death negates the existence of the personal body; after death, the continuation of the social and personal bodies is possible only by means of a metaphorical perception of immortality. Frank (1991 b:53), continuing from Turner's model, refers to four somewhat different dimensions of the body. He contends that the body has to resolve the four problems of self-control, sexual desire, attitude toward the self, and relations with others to be able to exist in society. Similarly, there are four types of body: the disciplined body, the body that mirrors society, the dominant body, and the communicating body. Frank is occupied with the degree to which the individual is predictable and creative, and whether the body is sociable and makes contacts. Frank's reaction is that every body has its own technique that shapes the form of its action (1991b:54). O'Neill (1985) discusses five types of body: (1) the social body; (2) the political body; (3) the body as a symbol of the state, the church, or the family; (4) the body as a consumer/user of goods and services; and (5) the body in medical science. However many bodies the social anthropologists wish to present, the basis for the concept of all of them is to be found in Douglas's perception ([1966] 1984, [1970] 1982) that there is a dichotomy of the personal body (physical and biological) from the social body; the first type of body serves as the source for the symbolism of the latter type. All the discussions about the body are variations on this theme. If we want to understand the body

The Body in Organ Transplantation 91 as a basis for creating social relations and at the same time as influenced by those relations, we must recognize that the body creates numerous possibilities for human action because it is both a biological and a social phenomenon. Sociological research, therefore, must examine the body as it has been perceived at every stage of history (Shilling 1993:202). Another level can be added to the discourse by discussing organ transplants and by focusing on the way different groups that are connected physically (or technically) and socially with the phenomenon perceive the body. The dichotomy between the personal body and the social body, and additional socio-cultural perceptions current in modern society are expressed in the weltanschauungen of the two groups of people concerned with organ transplantation. Both groups relate to the social body and the personal body. The relations are on two levels, one material and the other completely abstract. As will be seen, the medical teams and the people involved in the organ transplant relate to the personal body on a concrete level, as if it were a machine with replaceable components. Their attitudes to the body are practical, technical, and biological; and there is no reference to the metaphysical level. They understand that the social body provides a system that controls the distribution of resources (the organs) that make the repair of the machine possible. They accept the concept of a bank that collects and distributes organs, similar to a garage that has spare parts on shelves available for installation in vehicles that need them. The medical establishment and the medical personnel in the hospitals act as representatives of the community when they deal with organs. At the abstract level, the social body represents modernity and technological progress. In contrast, the donors and the public as a whole relate to the body of an individual as something concrete that belongs inseparably to a particular self. At the abstract level, the self continues to exist by means of the body's organs. They perceive the social body as a kind of central charity box to which one contributes for the benefit of the community in general. Giving is not to a particular individual. At the abstract level, the social body is something with which one does or does not aspire to be associated. One of the ways by which the personal body can join or associate with the social body is via organ contribution. Figure 4.2 presents the complex perceptions of the two types. The following section examines how the partners in organ transplantation express these perceptions. THE PERCEPTION OF THE BODY BY THE MEDICAL TEAM AND BY RECIPIENTS OF ORGANS The relations of the medical establishment and the transplant recipients to the two dimensions of the body are rational, enabling them to enter into the transplant transaction unemotionally. They compare the organic,

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Body

Medical Personnel +

Donor Families +

Recipients

Public

Machine

Physical Body + Self

Level

Concrete Personal

Nonexistence The Self Is Eternal

Abstract Denial Bank/Garage Concrete

Charity Box Workshop Represents

Social Modernity and

Social Association or

Technological

Non-Association

Abstract

Progress Figure 4.2.

Personal body and social body images.

personal body to a machine only, and do not consider it at a symbolic or abstract level. They perceive the social body at the practical, concrete level as a bank of organs. At the abstract level, the pragmatic discussion of the organic body amplifies to perceive society as modern because of the complicated technologies associated with organ-transplant operations. Synnott (1993:30) explains that the way people relate to their bodies is not only a function of the technological level that their society has reached but also a function of how much they appreciate that technology. Recipients of organ transplants confirmed this in a number of interviews, some of which appear below. Jonathan, Recipient of a Heart Transplant Jonathan lives in central Israel and is about fifty years old. He is married and has adult children. He is going bald, and the hair that remains has turned gray. He held an administrative position in a large industrial enterprise until he was stricken by heart trouble. Since he had an organ


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transplant, he has had to give up his job and now works part-time for another firm. He has a very pleasant manner with people. When he discusses his illness and the transplant, tears often choke his words. I interviewed him and his wife at their home. The atmosphere was warm and friendly, and both of them were keen to share their thoughts and feelings with me. Jonathan was referred to Marpeh Medical Center after suffering three heart attacks. His wife, Rivka, described the development of events. "At the first hospital, they catheterized him six weeks before the Jewish new year. The doctor diagnosed Jonathan's condition as very poor. He said that he was considering a bypass operation but was not certain that this would provide the answer. In the meanwhile, he performed a eatheterization. At his suggestion, we consulted with a professor at another medical center. At that stage, nobody was thinking of a transplant, only of a bypass operation. In fact, the subject of a transplant was never raised." Jonathan: "They considered advanced eatheterization." Rivka: "We never discussed it at home. We were waiting for the professor to tell us what he thought we should do. Quite unexpectedly, the professor spoke to us about the possibility of Jonathan having a heart transplant. He said, 'You must go home and think about it. If you decide to do it, let me know and then we'll put things in motion.'" She paused for a moment. "Then Jonathan got up and said, 'Please book me a place in the queue, Professor. I trust you. If you tell me a-b-c, I'll do it.' He looked at me and I said, 'Whatever you decide, Jonathan, I'll say amen!' But I must say that we were both a bit stunned. It was not Jonathan's style to make important decisions off the cuff. Usually he liked to discuss them at length at home. There, we would turn them around and around in our heads, but he made this decision one-two-three. Next, the coordinator invited us to have a first meeting with her. She explained at length what a transplant operation involved. She said there would be a long period with many tests and there would be a lot of tension. She said, 'The tension won't be so bad at first, but it will get worse toward the end of the year. By then, you'll be walking around with a beeper, waiting for a summons to rush to the hospital for a transplant operation. In a way, you're very lucky, since there's every hope that we'll find a heart for you here in Israel.'" Jonathan and Rivka went on for some time, narrating the events in detail, constantly interrupting each other with corrections and additions. "We want to be sure that you get it down exactly as it happened," he explained. I noticed that they frequently used professional medical terms.

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When I asked him how he felt after the operation, he replied that he had been rather disappointed because he had hoped that he would feel better than he did. Then I asked him how he felt about the donor family. They both answered that they felt a strong sense of commitment. I wanted to know whether this commitment made him feel responsible for taking extra care of the gift that had been given to him. I asked, "Do you take special care when crossing a street against a red light, because you've got to take care of the heart they gave you?" Jonathan: "You're right. It's like driving a borrowed car; you have to take extra precautions. It's as if I have borrowed a heart and must look after it properly. I ask myself if I dare play around with my life, since so much has been invested in it. I know that I was given a very valuable gift. Like a friend who lends you a car that he treasures and you worry that if you bring it back even with only a scratch it will be very unpleasant." [Author]: "Who do you feel grateful to? Who do you think gave you the gift, the young man who was killed, his wife, or the hospital?" Jonathan: "The hospital, for me, is like a garage. They changed a part and then they sewed me up and sent me home. I certainly feel grateful to the professor who did the operation. I am glad that we live in the twentieth century, and that he was able to master the technique that gave me life." Jonathan talks about his own body as if it were his car. When he and his wife talk about the social body, they speak with admiration about its mastery of the science and technology of the twentieth century. Shoshanna, Recipient of a Kidney Transplant Another case was Shoshanna, who had received a kidney transplant. She had to go back on to dialysis, because the kidney she had been given did not function correctly and was rejected. Shoshanna is a small woman in her mid-forties; she appears to be somewhat deformed physically. In the course of the interview, she explained to me that her deformity was due to the continuous dialysis she had to undergo, which had affected her bone tissue. She looked pale and weak. Despite her problems, she was very well groomed, with her long graying hair gathered in a bun at the back of her head. Her face was bright with hope. She handles an administrative job with considerable ability. She is married and has an adult son. The interview took place in the dialysis department of the hospital. She lay on a special armchair, in which she was attached to a dialysis machine. Liquid flowed through the tube that connected a vein in her hand to the machine. Her body and the machine seemed to be intertwined. She spoke with great animation. Problems with her kidneys had

The Body in Organ Transplantation 95 commenced when she was in her adolescence, shortly after she immigrated to Israel. In the hospital they told her that one of her kidneys was functioning at only 50 percent of normal. After her marriage, the physician had instructed that she must not become pregnant. She defied him, however, and had a son. The childbirth was successful, but afterward her kidney function dropped to zero. She described her feelings after this happened. "I vomited frequently and fainted several times. I did not feel at all well. Nevertheless, I overcame my fear. They performed several more tests and the kidney started to function at 35 percent. This lasted for four and a half years, when the kidney function dropped to 10 percent and I was put on dialysis." Shoshanna recalls that at that time people had to queue up for a long time to get dialysis treatments. Because of the shortage of equipment in the hospitals, adults were not put on dialysis. A short time later the hospital sought to persuade her to have a kidney transplant. At first she refused, but when the doctor told her that they would have to take her off dialysis if she insisted on refusing a transplant, she agreed to the transplant surgery. In her opinion it was a failure from the outset. I asked her where the kidney that they gave her had come from. Shoshanna: "The doctor told me that it was one in a million that was suitable for me. It had come from a woman who died in childbirth. Remember that I told you I did not want to have a transplant. I tried to carry on as if nothing had gone wrong." [Author]: "Was the kidney rejected at once?" Shoshanna: "It did not work from the first moment. I kept it in me for six weeks to please the doctor. He insisted that we give it a chance. He wanted to make a name for himself. He didn't seem be worried about my opinion. In one week I had ten bypasses. I went through real hell. I still suffer from that transplant. My stomach is infected because they left some stitches in it. This problem developed only five years after the operation." [Author]: "And then you went back on to dialysis?" Shoshanna: "Of course! What else could I do? They put me back on dialysis at once. I was in a very bad state. Two years later, I got a virus and was hospitalized again—but I think that this was also due to the transplant failure." [Author]: "I gather you are angry that your kidneys don't work?" Shoshanna: "Of course! Especially because of the physical effects, although my husband doesn't mind how I look." [She obviously means her external appearance.] "In my family, everybody had teeth that never needed treatment and would be good for 120 years. Now I need dental treatment all the time. Every time I go to the dentist, I get angrier. I seem to be disintegrating. It is like a horror film in which you see the robot

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Organ Donation and Transplantation falling into pieces. So, of course I'm angry, but I don't say anything about it to my husband, to my son, or to my friends. Nevertheless, the truth is that I think I would not be human if I did not feel angry about what was done to me."

Shoshanna relates to her body as a machine that isn't working properly, a machine that incompetent mechanics failed to fix. After she had the kidney transplant, she was not interested in knowing who donated it, because this was merely a machine's spare part. Relating to the body as a machine causes many people with transplants to compare their body organs to parts of an automobile. I have often heard the heart recipient say, "The heart is, after all, only a p u m p , " and the recipient of a kidney say, "The kidney is, after all, just a strainer." The use of the phrase after all in these expressions indicates that the speakers once thought that these vital organs were more than mere parts of a machine but that they have come to accept the approach of the physicians. Shilling (1993:37) explains that using a metaphor when comparing the body to a machine is especially widespread in society when discussing such subjects as health and sickness. It is interesting in this connection to note that in the publicity put out by the Association of Garages and presented on Israeli television between January 3 1 , 1994, and February 18, 1994, there was an inverted use of the metaphor, and the automobile was compared to a human body. Rogers suggests that this comparison of the body to a machine appears to emphasize a distinction between body and soul. In her research on the opinions and similarities that people use to explain health and sickness, she contends that comparisons of the body to machines derive from understanding that modern medical treatment is made possible by technological achievements and scientific thinking. The remarkable technological achievements of modern biomedicine seem to be unlimited; and the doctors appear to be omnipotent, with great healing skills attributed to them (1991:148, 209). Just like a machine that is looked after with great care and regularly overhauled, the body, the possession of the individual, can continue to exist "forever" if given the correct diet, exercise, and periodic tests. The idea that the body is a machine is emphasized mainly in the rational, scientific approach to medicine. Baudrillard (1993:53) explains that people value the machine as an extension of themselves. The automaton is similar to a person. In his view, comparing a body to a machine is sound because the machine can activate its organs and intelligence without needing to have a soul. Thinking along these lines enables doctors to keep emotional distance from what they are doing. I talked with a doctor specializing in cardiology at Marpeh Medical Center, where he was responsible for treating some patients after heart

The Body in Organ Transplantation 97 transplants and others who were candidates for such transplants. He described the stages of the treatment for me. He said, "The first stage is to give the patient the maximal drug treatment when they first come to us. We only use more extreme methods if they do not respond adequately to this. We may find that the patient is suffering from general heart disease or from a blockage of the arteries. We catheterize all of them to ascertain where the blockages are. It is almost certain they have already suffered a number of heart attacks because of the blockages. After every attack, a scar is left on one of the muscles of the heart, causing the heart to function with difficulty, until ultimately the heart is totally threatened. A second problem is that the flow of blood into the heart muscle is impaired. We perform many tests to ascertain whether the patient still has enough live heart muscle that can be saved by improving the flow of blood. If the answer is positive, we say that the patient may recover, either by having the arteries of his heart unblocked with a balloon or by means of bypass surgery. Even after a person has had several heart attacks we can try these means, provided we have found enough living heart muscle to justify these means to save the patient's heart. Only when it is established beyond any shadow of doubt that the heart muscle is dead and can never function again do we abandon the use of balloons and bypasses to open the blockages." The terms used, such as blockages, balloons, and bypasses, are all technical and mechanical, indicating that the heart is being treated as a part in a great machine, which happens to be a human being. This mechanical approach is expressed in the jest of a senior doctor who referred to his colleague as "a plumber, who opens blocked pipes and changes pipes that are too damaged for further use." The words of a doctor dealing with lung transplants are another example of this attitude. He said, "For a lung transplant we consider recipients who are in the final stages of lung disease, but whose general condition otherwise is good. Of course, we also need a donor whose lungs match those of the recipient. We carry out the matching in a very simple way. Two factors are tested: the sizes of the lungs and the blood types of the donor and the recipient. When these two factors meet our expectations and we are satisfied that there is a good match, we can go ahead and do the lung transplant. The moment we receive information that there is a potential donor somewhere, we summon the candidate to the hospital. A medical team, not from our hospital, extracts the lungs from the donor who has died. Only when everything is 100 percent clear do we harvest the lungs. Harvest is a very apt word for what is done after the brain death of the donor has been determined beyond a shadow of a doubt. The action of harvesting is a complex technological process, during which material is first injected into the donor's body to preserve the organs while they are being removed. It is important that the heart

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receive a flow of blood until the moment it is removed. This prevents damage to other organs that are not receiving a supply of blood. After extraction, the heart is placed into a liquid solution containing ice and is taken to the other hospital where they are already beginning to operate on the recipient. It is all-important that, at the time of what is called schema, the deficiency in the blood supply be minimal. The organ must be inserted into the body of the recipient. As soon as possible after arriving at the hospital where the transplant will be performed, all the organs have to be transplanted. The tube system is particularly important because it provides the air tube for the recipient. The artery, which brings the blood supply to the lung; and the vein, which drains the venal supply of blood from the lung, are also very important. The actual operation is less complicated than many other operations performed in hospitals. The whole procedure usually takes three to four hours." The medical team also has a biological relation to the body, and some of the terms used by the doctors are taken from the world of agriculture. Hence, the use of the expression "harvesting the organs," as noted above. The insertion of a harvested organ into the recipient is described as "planting." Sharp (2001) argues that through this kind of rhetoric, human bodies are transformed into vegetation of all sorts, and this "green imagery" obscures their original purpose. In summary, if the personal body is regarded as an automobile, the social body is regarded on the pragmatic level as a bank of organs, and the medical community regards itself as representing the community and mediating the transaction. While I was doing my fieldwork, many attempts were being made in Israel to establish a national center for transplant. Eventually such a center was set up in Rambam Hospital in Haifa in 1993. One of its functions was to regulate the distribution of organs for transplant candidates among the different hospitals in the country. Another function was to publicize the community's need to have organs available through the central bank for transplant candidates. At the abstract level, medicine is regarded as representing modernity and the latest scientific and technological knowledge in the world. During an information day on organ transplants at Tel Aviv University, described at the end of the last chapter, a pamphlet prepared by the University Student Council was distributed among students by the medical teams of the Hadassah and Beilinson medical centers. It stated that hundreds of patients, children and adults, were waiting in Israel for transplants of kidneys, livers, hearts, lungs, and other organs and tissues. The pamphlet went on to say: Those for whom transplants are not found to replace their own diseased organs and tissues are kept alive with the aid of artificial respirators, mechanical


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dialysis, drugs, among other things.... If they do not find places in the queues waiting for transplants, many of them will die. Others may continue to live, but they will be chronically ill or the quality of their lives will be very poor until the end of their days, because they are unable to work. Nor will they have normal family lives and must subsist as burdens on their families and on society. A gift of life! An organ is a gift of life! In Israel, we have the medical knowledge and the advanced professional skills required to perform organ transplants. However, the main problem is that the public does not contribute sufficient organs for patients who need them. It is imperative that we overcome this problem. The solution rests with all of us—to increase the number of contributions of organs significantly. This will improve the prospects of survival and of living successful lives considerably for those in need of organ transplants. Elsewhere in the pamphlet distributed on organ-transplant information day, it said, "The transplant branch is one of the most advanced and important branches in modern medicine. Every country that wishes to provide its citizens with advanced and highly developed medical services takes steps designed to bring about advances in this area, which contributes to raising the general standard of medicine and the quality of life." The medical team is the intermediary between the donors and the recipients. The arrangements are made through the center responsible for the organ bank. It is possible to carry out the transaction by using modern technological means. A different view of the body is expressed by some people who have donated the organs of their deceased family members and by the media— specifically, that the organ belongs to the entire society. PERCEPTIONS OF THE BODY EXPRESSED IN THE MEDIA A N D BY MEMBERS OF DONOR FAMILIES When we examine these perceptions of the body as expressed in calls from the media and from the donor families for more organ donations, we find that at the concrete level the organs are regarded as inseparable parts of the human body. At that level, the organs continue the existence and perpetuate the memory of the deceased individual in the body of the recipient after the transplant. The social body is perceived at the concrete level as a repository for organ contribution and distribution. At the abstract level, this repository is perceived as a national asset. The following examples will show how these perceptions were expressed in discussions about transplants. The Kerens, a Donor Family I came to know Jacob and Rachel Keren through one of their children. They live in a village in central Israel. Jacob is a mechanical engineer

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and Rachel works in education. They are an Orthodox Jewish family. When their daughter Anat was killed in a road accident, the family donated her kidneys for transplant. I interviewed Jacob and Rachel in their small home in their village on a stormy winter day. Outside, the wind raged and the rain poured down in torrents. Inside, I was received with great warmth. It was clear that not many people were prepared to listen to their lengthy and detailed account of what had happened. Rachel described how they were sitting at home when a hospital telephoned to tell them that Anat had been badly injured in a road accident and was in the hospital's intensive care unit. "We rushed to the hospital. On the way, I prayed that her hands had not been injured, because she was an artist and sculptor. In addition, I prayed that her legs were unhurt because she was a fanatical hiker and served as a guide while she served in the army and afterwards for organized groups. I could not think of anything more serious than her arms and legs, but Jacob told me afterwards that the moment we got the news he feared that she had suffered some mortal injury." When they reached the hospital, they were taken to the intensive care unit to see their daughter. There they met the transplant coordinator, who, they assumed, was a nurse serving in the hospital in an administrative capacity. Rachel did not yet realize that Anat would never return to normal life. The coordinator tried tactfully to explain the truth to her. Rachel continued, "Later, when I reconstructed events in my mind, I realized that she had been trying very nicely to get through to me and to help me to understand how serious Anat's condition was. Then she took us to see Anat. As far as I could tell, she just looked beautiful, although she had suffered a blow to the eye. She was always very beautiful. I seized on small things, like the bag of urine hanging from the bed. 'Oh, good!' I said to myself, it's a sign that she can still....' Although the coordinator explained to me how serious Anat's condition was, I still did not grasp the thought. Who could have thought that a young, healthy girl, with everything normal, no defects...." For Rachel and Jacob, Anat was still a lovely girl with abilities and desires. She was much more than a mere body composed of organs. "She is a whole world!" Jacob exclaimed (see also Sharp's [2001] note that "donor kin persistently view donors' bodies not as objects, things, or commodities but as lost loved ones"). After they received an explanation of Anat's condition, the doctors approached them with a request that they grant permission to donate her organs. Later, a specified procedure was introduced in the hospital defining how and by whom families of a deceased person should be approached to donate the organs of the deceased; it was no longer left to the discretion of the doctors to approach the families independently, as happened in the case of Jacob and Rachel.


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Jacob told me that they agreed to donate Anat's kidneys on one condition. "We asked that full respect for the dead according to Jewish law should be observed. There are cultures that do not specify how the dead should be treated, but Judaism does. I said to the doctors, 'Look me straight in the eyes and give me this assurance. Know that, if you do not keep your promise, I will square accounts with you somehow.'" Another example of the relation of a donor father to his daughter's body appears in an article by Zippora Roman, which appeared in La Isha magazine on May 9, 1994. The article included an interview with the dancer Richard Auerbach, whose daughter had been killed in a road accident in San Francisco. Auerbach told the interviewer, "I saw my child that same night, unconscious and connected to instruments. There were no external signs on her face or body that her brain was completely stricken. Her eyes were open, but they gave an impression that there was nothing behind them. The decision to donate her organs was entirely mine. I thought to myself that we could save a few other girls in this way." He went on to say that he never thought of contacting the recipients of his daughter's organs. "What for? To get thanks? Of course not. Nor did I feel that my child would go on living in them. Parts of the body do not have a separate life in my opinion. After death, a person lives in the hearts of those who loved her." Nevertheless, many families refuse to donate the organs of those they loved because they fear that this action will affect the integrity of the body and will be a desecration and show lack of respect for the dead. They look upon the body as something more than a mere collection of organs similar to a machine. To them the tangible body is also the embodiment of the self of their dear one, and an injury to the integrity of the body will also harm somebody whom they do not want to lose. The meaning of the donor families' and the media's perceptions of the personal body is that the self exists in the body. They assume that the self and the body are inseparable in life but that in death they separate and the self can continue to exist. Some people think that the self continues to exist after death by virtue or means of parts of the tangible, personal body that are implanted in another body. An example of this appears in the next chapter. The relations to individuals, to their abilities and their aspirations, and to the body as representing something more than the total of all its organs, are two sides of the same coin. It is not possible to separate the relations of the families to the tangible body and to the self. According to Giddens (1991:59), most people feel that there is a union of the body and the self, except in patients suffering from schizophrenia. Furthermore, separation of the body and the self may exist when people

102 Organ Donation and Transplantation are in traumatic situations, such as being prisoners of war or, to a diminished degree, when the basic feeling of existential security is undermined in situations of suspense in daily life, or during what he calls "disruptions in ontological security." In a recipient of a transplanted organ, such a separation can develop to help him or her cope with an impossible situation of obligation. Some of the donor families believe in separation of the body from the self because, in this way, they can feel continuity of the deceased. Families will refuse to donate organs if they feel that the self and the body are united. The self is essentially social and not biological. Hence, when the self is considered an inseparable part of the body, the body, too, becomes a social entity and thus cannot participate in a transplantation exchange. However, when the self is considered separate from the body, the body remains biological and thus also exchangeable. For this reason, too, recipients of transplants believe in a separation between the body and the self. On an abstract level, donor families relate to the prospect that the body or its organs can perpetuate the memory of the donor through the donation. An article in Yediot Aharonot on July 22, 1992, reported an interview with a father who had donated the organs of his son, Ilan. The headline read, "I feel that Ilan continues to live in the bodies of others." The article quoted the father as saying, "Now I feel that Ilan continues to live in the bodies of others. I simply wanted to perpetuate his memory among other people, including those whose lives were saved thanks to him." On February 18, 1994, an article appeared under the headline, "The parents of the young donor who was killed in the accident say, 'Something of our Mark continues to live.'" In Maariv on April 6, 1994, Almog Hadad, who had donated the organs of his son to five people, stated, "I hope that those who have received the transplants will always remember that they have in their bodies parts of a wonderful Golani Brigade soldier." Although the continued existence of the personal body results from real organ transplants into the body of the recipient, it can continue to exist abstractly on a symbolic level. The attitude of the donor families and the media is that the material body can be dismantled and parts of it can be used to save the lives of others. This kind of giving appears to be a donation to charity, as Jacob Keren expresses it. He said, "True charity is giving secretly and keeping it a secret, not publishing it later for one's own glorification. People who perform acts of loving kindness and righteous deeds take care that there is no publicity. They do not want it to be known who made the donation, because this would undermine the quality of the good deed. It is very awkward for me to meet people and to have them feel that they are alive because of the gesture that we made—that we saved their lives or enabled them to enjoy a different quality of life. For this reason, I would not like to meet the


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recipients. A Jew performs a good deed—but does he have to know who exactly benefits from it?" In cases like that of the Kerens, the giving is to an abstract body, the social body, and not to a particular person. It is not like a concrete exchange or a reasoned action, in which organs are transferred to a specific person for a very clear purpose. On the abstract level, when the donation is not to a specific person for a specific purpose, it is frequently assumed that it makes the donor family part of the social body. In this connection, it is interesting to note that many families whose loved ones have committed suicide agree to donate their loved ones' organs for transplant. According to many traditions, a person who has committed suicide is excluded from the social body. By means of the organ donation, however, the right to belong to that body is restored. The following excerpts from the press illustrate this. The parents of the suicide donated her organs. (Yediot Aharonot, November 1, 1992) Eighteen months ago, a short time before his expected release from the army, the son of [name withheld] got hold of his sixteen-millimeter pistol and shot himself in the head with it. His parents donated his organs for transplantation. (Maariv, April 6, 1994) A fourteen-year-old boy committed suicide. His mother donated his organs for transplantation. (Yediot Aharonot, September 8, 1994) The story of Georgie Vipratski, fourteen at the time of death, is another example of the wish to belong to the social body by donating organs. Yediot Aharonot (April 4, 1995) reported, "The parents of the child who belonged to no religion and who was not buried when he died, blamed the hospital. 'They promised us that they would arrange a place of burial for the child if we donated his organs, but they did not keep their promise.' Rambam Medical Center denied that they had made any such promise, but this denial does not change the feeling of the family that donating his organs should have gained him admission into the social body." The satirical newspaper Something Else [Davar Acher in Hebrew] stressed this point more strongly in an article from April 7, 1995, about the difficulties of finding a cemetery for the burial of non-Jews: "The queues for transplants will be shortened throughout the c o u n t r y — There has been an improvement in the condition of a recipient of a transplanted leg. His doctors report that he feels well enough to participate this week in the unveiling of the gravestone of the donor. The family of the donor thanked the recipients, into whose bodies the organs had been transplanted, saying that through them it was possible to bury at least a part of their son."

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Alisa Flatow was a young woman killed in a terrorist attack in Kfar Darom, a settlement in the Gaza Strip. Her parents' consent to the donation of her organs for transplants was also explained as her wish to be part of the Israeli social body. Yediot Aharonot wrote on April 13, 1995, "The bereaved father said, ' N o w I feel part of the State of Israel.'" In a sub-title the newspaper quoted him saying, "Alisa received so much love and life from Israel and now through her organs she received an opportunity to repay the state." During my research, there were only few cases in Israel of organ donations from the bodies of soldiers killed in battle or of citizens murdered by terrorists. In any case, they are part of the social body, because they lost their lives for the state. Representatives of hospitals vigorously deny that they ask families for the organs of soldiers killed in action or of victims of terrorism, saying that in any case it would not be possible for medical reasons to use these bodies. The different perceptions of transplant participants either make possible or prevent the donation of organs. When the physical body is likened to a machine and the deceased is not seen as a human being, the action of exchange is considered possible. When the donation is explained as a gift to charity and there is a wish to become part of the social body by means of it, the exchange becomes possible. However, when the self is considered an inseparable part of the body or when belonging to the social body is not achieved by the donation, the exchange is not implemented. It seems that the logical reasoning of transplant recipients and the medical teams differs from that of the donor families and society. This obliges the hospital to create two separate institutional groups that speak at different levels. The dissimilar perceptions of the body by each group, too, give rise to different conceptions of death, as are demonstrated in the following chapter.

Chapter 5

Life and Death Sociologists and anthropologists, when dealing with the body, generally ignore the dead body, in contrast to sociologists and anthropologists who do deal with death and establish the relations between the living body and the dead body (see Sudnow 1967; Shahar 1980; Mulkay 1993). The explanation for this is that death constitutes a negation of the body not only in the biophysical sense but also in the socio-cultural sense. According to Bauman's definition (1992:129-160), "Death is an emphatic denial of everything that the brave new world of modernity stood for, and above all of its arrogant promise of the indivisible sovereignty of reason. Death contradicts the concept of a rational order governing modern life." Shilling (1993:18) points out that sociology traditionally deals more with the subject of life than death. In his view, the attitude to the body in modern societies can only be fully understood if one takes into account the ways that individuals cope with death. Accordingly, death is of paramount importance in an analysis of a society's relationship to the body. Against this background, organ transplantation is seen as negating the belief that death involves the inevitable termination of everything that life stands for, because it makes possible the continuation of existence; the technique inspires symbolic ideas of immortality and of life enduring in a new body after death. This chapter attempts to illuminate the disparate cultural and social approaches to death of those who are involved in the transplantation of an organ. Candidates for a transplant fear death and at the same time hope they will evade it; the family of the deceased person whose organ is transplanted sees a possibility of their dear one somehow continuing

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to exist, despite death. The members of the medical profession involved are the only recognized authorities to announce death, while on the other hand they believe that their knowledge and professional skills enable them to defeat death. The attitudes toward death of all people involved in organ transplantation connect deeply to their attitudes toward the body and are shaped by the modern, socio-cultural milieu they live in. These attitudes enable the exchange that exists in organ transplant. Charmaz (1980:17) comments that although death is a biological phenomenon, it has essentially a socio-cultural significance, and people's interpretation of death is inevitably the result of their personal experiences and their interactions with others. Examining the socio-cultural outlooks toward death of the groups concerned with organ transplantation can contribute to our understanding of the sociological and social-anthropological significance of the body and death. This would provide an insight into the meaning of death in modern societies in general, and in Israeli society in particular. Although, when dealing with the body, anthropologists and sociologists tend to ignore the dead body, other researchers w h o are concerned with death have pointed out that social beliefs about death and about the body are closely associated. Three main approaches govern the accepted wisdom of sociologists and anthropologists in connection with the subject of death. The first distinguishes between the physical body and the self. The second distinguishes between biological death and sociological death, and the third between private death and public death. Berger ([1967| 1990), Elias (1985), and Giddens (1991) explain that social concepts of death emanate from distinctions made between the biological body and the identity of the self. Betger ([1967] 1990:53) comments that death threatens the personal body and its social activities; he states that the way to counter this threat is to institutionalize social activities through the religious establishment and the social system. Elias (1985:158-159) suggests that death is an existentialist problem for individuals because of the modern concepts of the body. The body has undergone a process of socialization, rationalization, and individualization. In modern societies, people relate to their bodies as social phenomena and reject a purely biological relationship to them. Giddens (1991:161) believes that death is routinely ignored today because it threatens the individual. Death has been transformed into a technical process that is to be dealt with by medical and other professional practitioners. "Death remains the great extrinsic factor of human existence" (162). As such, it cannot be integrated into the different modern systems of thought. All the sociologists mentioned above explain that the social organization of death attempts to shroud it from inquiring eyes because attitudes

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Death

^ The Personal Body

The Social Organization of Death

Self-Identity

Figure 5.1. Death separates the physical body from the self. toward death emanate from a feeling that death threatens self-identity and the personal body. The first approach to death can be summarized by Figure 5.1. This way of thinking finds expression in concepts of death contemplated by members of the medical team doing the transplant and by the recipient of the donation. Both accept the death of the body as a biological fact and ignore the self-identity of the donor. Treating the body as something that is merely biological and mechanical makes transplantation possible because it sanctions taking the body to pieces. The individualization and rationalization of the body in modern societies enable recipients to repress their feelings and to ignore the selfidentity of the donor. Furthermore, the rational, technical pronouncement of the fact and moment of death by doctors makes it possible for the deceased's family to believe that their loved one's self-identity continues to exist independently outside the body. A second approach to death distinguishes between biological death and social death (Figure 5.2). Both Sudnow (1967:74) and Mulkay (1993:32) have drawn attention to the fact that those who die cease to exist socially even before they have been defined as biologically dead. Once the body is both biologically and psychologically dead, death is organized socially by a set of actions such as contacting a mortuary, putting a body in the mortuary, informing the insurance company, and so on (Sudnow 1967:75).

Death

The Social Organization of Death Biological Death

Sociological Death

Figure 5.2. Death distinguishes between biological death and sociological death.

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Death

^ Private Death Figure 5.3.

The Social Organization of Death

Public Death Death separates private death from public death.

The fact that society distinguishes between two kinds of death also creates the possibility that the body will be determined as dead biologically but that socially the person may go on living forever. It is precisely by virtue of this distinction that families become encouraged to donate the organs of their loved ones who are brain dead, thus making possible the act of transplantation. The third approach distinguishes private death from public death (Figure 5.3). A number of researchers have indicated that in modern societies there is a process of individualizing death (see Aries 1981; Elias [1939] 1982; Walter 1991; Shilling 1993). Death threatens the individual somewhat less than it threatens society. As a result, instead of being only a shared event, it is almost hidden (Shilling 1993:189-190). The social organization of death separates the dead person from his family and friends; death is concealed from the public. However, at the same time, death is constantly presented more openly in the media in newspaper reports and in news shots, documentary films, action films, and television programs. Prior (1989:161-162) contends that death is only portrayed openly when it conforms to an accepted public image. Death is always presented in Israeli society with great respect when it is connected with the social body, as in the death of a soldier in war or of a citizen through acts of terror. In such cases, the personal body becomes, symbolically, part of the social body. Chapter 6 elaborates on this theme. Several researchers have discussed at length the fact that a modern society tends to appropriate death from the public area and conceal it, even to treat it as a social taboo (Aries 1981; Walter 1991). Sociologists and anthropologists emphasize that modern societies feel confused and, to some extent, display a refusal to face up to the existence of death. On the other hand, they also demonstrate that they do accept it to some degree. Giddens (1991) and Mellor (1993) explain that death forces individuals to face questions about the meaning of life, and this questioning disturbs their basic feeling of security (what Giddens calls their "ontological security").

Life and Death 109 Death constitutes a problem in every society, for although every social system is constrained to recognize death's existence, it must also deny it if it wishes to make possible the continuation of normal, daily life. Individuals react to society's multiplicity of approaches to death by creating private approaches to death, which they develop from socio-cultural sources and which are very flexible. The larger the number of such approaches to death, the greater the difficulty of containing them within a common, accepted framework. Individuals are left with feelings of discomfort and isolation when they try to come to terms with death. Hence, they find a need for a mechanism of self-identification. How they achieve this depends on their body's personal and biological history. Death of the body and of the personal project upsets the modern self. Death can be redefined, therefore, based on ideas of the personal body and of self-identity. For most people, death comes slowly as the final stage of life. A professional team handles it in a rational manner within an organized system that contains technical means of prolonging life (Mulkay 1993:139). Shilling (1993:196) concludes his book with the statement that the importance of the death of any individual member has lessened in modern societies. Nevertheless, in my opinion, death remains in many cases a social event of considerable significance, and the social body plays a major role in dealing with it and coping with its consequences. Although they recognize this truth, many researchers tend to ignore the relation of the individual to the social body in their analyses. I believe that a three-dimensional model would describe the organization of death better than the twodimensional model used by other researchers. Figure 5.4 presents social perceptions of death as arising from perceptions regarding the personal body, the social body, and self-identification. This conception of death determines the organization of death in society. Society sets criteria that determine whether death is heroic or banal, lawful or unlawful, strictly personal or public. The medical sector in

Death

Personal Body

Social Body

Self-Identity

Figure 5.4. Social ideas about death.

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society determines whether the body is or is not dead and when the moment of death occurs. This sector, as society's representative, also holds responsibility for the distribution of life resources in the form of organs from the dead body that can be used for transplants. The social-anthropological view of death in society cannot be separated from the perspective of social ideas of immortality. According to Bauman, there can be no immortality unless there is also death (1992:7). Sociologists point out that transcendental ideas of death result from the transcendental character of the cultural or other questions that the individual asks and wants to have elucidated (Bauman 1992; Lifton 1979). Lifton explains that the belief in immortality is not a denial of death but an informed knowledge of death, which expresses a need for the continuation of a symbolic relationship that existed before and continues after the death of the individual. Immortality is symbolic since in every cultural framework there is a knowledge of the meaning of death and belief in some sort of continuation of life. People create a symbolic continuation of life after death in their imagination because they feel that the activity in which the deceased was engaged is incomplete (1979:284). The belief in immortality is therefore basic from a cultural point of view. Death and immortality are perceived through activities during life. All human societies present this approach in one form or another. Nevertheless, different cultures intensify or reduce the significance of the evasion of death in the context of the course of life and suggest ways to reduce the fear of death by means of hope. Some societies have institutions that promise eternal life (Bauman 1992:9). Lifton (1973:94-98) lists three ways in which society may express belief in immortality. One is the biological, by the creation of a family unit. Having children creates a feeling of continuity. Individuals remain part of a continuous biological chain, even after they depart from this life. The family unit is the social and cultural expression of this biological fact. The family unit expands into the nation and the state, which also provide continuity. A second way is by promoting belief in a world to come, commonly practiced by religious organizations to extend immortality to their members. The third possibility is the case when individuals believe that they live on through the work they have done and the things they have created for their families, communities, and mankind. Individuals feel that they will still exist in the memories of people who survive them, even if one day their bodies die. This gives the individuals the conviction that they and their memory will be perpetuated and not be extinguished by death. The kind of death that people die affects the survivors' views of the meaning of life. If people die for a national, religious, or social cause, their deaths assuredly perpetuate their memory and give their lives meaning for survivors. If the cause of death is illness or an accident, the death is apparently meaningless.

Life and Death 111 There is a clear, basic need in most people to believe in the continuation of life after death, through things created and through social interaction before death (Lifton 1973:34). The craving for immortality is deeply imprinted on human culture and in many societies. Relatives and friends organize cultural evenings or other activities to perpetuate the memory of the deceased (Bauman 1992:53-55). Such social gatherings originate from society's desire to reward the dead by conferring immortality on them for their contributions, while alive, to causes valued by society. Every individual in society who dies is a candidate for this kind of immortality. The claims of some of the deceased to this kind of immortality, for instance, political leaders, writers, artists, and philanthropists, are particularly strong. This type of immortality is without a doubt closely linked to social relationships and concepts. It can be described in terms identical to those used in describing death; it is also based on ideas of a social group, of self-identity, and of the personal body, as apparent from Figure 5.5. Thus, social consideration of immortality has its origins in human beings' needs to continue to exist in the perception of others and for their creations to continue to exist, so that in effect their lives will continue. Self-identity, according to this approach to immortality, is eternal and continues even after the personal body ceases to exist. The social group is defined as eternal and continues without regard to time or place. Only the personal body—the tangible body—cannot exist forever in practical, material terms. By means of organ transplantation, however, the personal body does continue to exist, and the bonds between social perceptions of the body and immortality are strengthened. Transplantation enables the continuation of the donor's self-identity, whose body continues to exist through

Immortality

Social Organization of Immortality

Personal Body

Social Group

SelfIdentity

Figure 5.5. Social perceptions of immortality.

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the organs transplanted into the body of another person. Since this action is executed in a social context, a connection is formed between the personal body and the social group. A social category that Lifton (1979:59) calls "professional immortality brokers" is responsible for organizing this kind of immortality. Although he does not refer specifically to doctors, it seems clear that they function as brokers because they organize the arrangements concerning the transplantation of organs. Thus, they ensure the continued existence of both donor and recipient. By means of organ transplantation, the medical profession also creates the illusion that it can heal the dead and bestow eternal life (1979:283). In the course of discussions with them, participants in organ transplants have confirmed the validity of these ideas. Every group relates to death and immortality according to its social function in the general community. SOCIAL CONCEPTS OF DEATH A N D IMMORTALITY A M O N G THE MEDICAL TEAM The medical team does not react positively to the idea that they are conferring immortality on the body of the donor, even though they are aware that the families agreeing to the transaction are actuated by this thought. As far as the medical team is concerned, the body is a commodity that, when they act as intermediaries, they exchange for life. The medical establishment defines death as a biological and technical matter. According to the functioning or non-functioning of the different systems of the body, doctors decide when the moment of death takes place. This moment of death is a zero point, and the people who control human existence establish its outer limits (Giddens 1991:161-162). Dr. Eli Katz of the Hadassah Medical Center is a member of the team of doctors who perform liver transplants; he has been very active in promoting public awareness of the need for transplant donations. In answer to a question about the definition of death and how it is determined from the medical point of view, Dr. Katz replied, "All over the world, defining death involves the concept of brain death. Brain death occurs when there is irreversible damage to the brain at all levels; there is no more activity in the brain and no supply of blood to it, and breathing stops. When a person has been badly injured and tests produce negative results for all the above criteria, the patient is considered to be brain dead." Dr. Katz went on, "This constitutes the individual's death. From a physiological point of view, the heart and other organs can still continue to function for from twenty-four to seventy-two hours after brain death." Lock (2002:78-126), by describing the discussion of the set of criteria by which death can be determined, notes the struggle of the medical team to have a determination that can be confirmed scientifically.

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In a circular1 issued by Professor Yoram Lass of the Israeli Ministry of Health on November 29, 1987, the Ministry outlined its attitude toward death. "Death is the end of the life of a human being; it is not the death of specific organs, or tissues, or cells...The termination of the life of a person may involve different criteria. The heart stops beating and breathing stops, or the brain stops functioning. The moment of death is the moment when the brain dies. This can be determined by medical doctors who apply reliable methods and standards." All the medical tests that have to be carried out are detailed in the circular. Thus death is determined by mechanical and biological tests that are considered to be exact and correct by the medical profession. Baudrillard (1993:158-160) contends that the nature of biological death is objective and precise; it is a modern scientific fact and is irreversible. According to this biological approach, death is ultimate and opposed to life, while other approaches to death do not separate life and death. The biological approach perceives the body as a machine, which either works or is out of order. This particular biological machine, the body of man, may therefore be encountered in one of two alternative states: living or dead. There is no possible link between the two states, no mystique, and no effect on the self-identity. Nevertheless, some kind of body-soul dualism is found in the approach of the biologists, even though their analysis does not relate to the soul. To sum up, the definition of death by the medical sector in terms of Figure 5.4 is based on a relation to the personal body in biological terms. It fails to acknowledge self-identity and sees death as something connected to the social body. This gives the medical team an important function in the organization of death. Since death is defined biologically and technically, its organization is also comprehended at a biological, technical level. Sudnow (1967:84) describes how doctors change their relations to patients as the moment of death approaches. For the doctors, the patients now cease to be people and become bodies, soon to be corpses. From that moment they talk differently to or about them. They are less concerned with the patients' thoughts and comfort, and tend to concentrate on the surrounding instrumentation. According to Baudrillard (1993:114), the medical group relates routinely to the body as a cadaver and not only at the precise moment of death. Amir (1987) comments on the manner in which announcements of death are made in Israeli hospitals. She describes a system where such announcements are governed by the bureaucratic process, which aims at ending the contract between the patient and the hospital. The medical team is aware of concepts of immortality, but does not attach any importance to them except in rare cases. 11 http://www.health.gov.il/download/forms/all96_mkl5_87.pdf

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A social worker who serves as transplant coordinator in one hospital said to me, "Several donor families have explained to me what actuated them when they agreed to the donation of the organs. First, they speak of altruism and the necessity to give life to another person. Second, they feel that the donation gives meaning to a death caused by an accident or another trauma, or a brain hemorrhage. In such cases, the death always comes suddenly and without the family having time to prepare. Third, they have a feeling of granting continuity to the loved one, but this feeling, at first sharp, becomes blunted after some time." From this comment, we learn that an awareness of the perception of immortality does exist in society, but that it is marginal. It is interesting to note that for the information day at Tel Aviv University described in Chapter 3, the director of the seminar had labels prepared and distributed to the participants. These read, "Do not take your organs to heaven—we need them here." This was taken from wording used in England on similar occasions. The words clearly hint at a possibility of immortality. The medical team was not only aware of the perception of immortality implied in the wording, but fulfilled a central social function by permitting the circulation of such thoughts. If, according to the doctors, there is always an explanation for a death, and the explanation is generally failing health, then the medical group in society is also responsible for the widespread belief that people can live forever (see Bauman 1992:142). The fact that the medical team is dealing with the body at the time of death puts it in charge of the organs and gives it a considerable say about who gets the organs. Thus, the doctors become brokers of immortality. By means of their medical and technical knowledge and skills, they can grant immortality to the donors by transplanting those organs in other bodies. By means of this techno-medical act, the donor continues to exist through his organs, which go on living in other bodies; the verdict of death is postponed for the recipient. SOCIAL CONCEPTS OF DEATH A N D IMMORTALITY A M O N G TRANSPLANT CANDIDATES A N D RECIPIENTS The candidates for transplants, as well as the recipients, adopt the biological-technological view of the doctors in regard to death, just as they adopted this medical point of view in regard to the body. They experience feelings of guilt about the donors, who have died that they may live, but other factors make up for this sense of obligation. They cannot possibly accept the concept of immortality because immortality means that in some way the donors continue to live by means of the recipients' bodies. These concepts are raised from time to time and have inspired books and films about how the human characteristics of the donor of an organ have passed over to the recipient of the transplant.

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The candidates for transplants have to confront death all the time. In this they differ from the doctors and the families of the donors. They have to cope with the fear that their personal bodies may cease to exist and their self-identity will be abolished. Another person's death is something that takes place elsewhere, "there," far from living people. It does not affect the continuation of an individual's own existence. Although it is painful because it forces one to face up to the possibility of oblivion or "nothingness," it is still part of one's accumulated knowledge. The thought of one's own death, however, is something quite different; it is part of an unknown area outside one's experience (Bauman 1992:3). Lifton (1973:93) believes that individuals can relate to the thought of their own death with a degree of detachment and a certain measure of denial. They manage to disguise the image of death in the socio-cultural way that their experience has made possible. Leah, a Candidate for Transplants of Organs, Outlined Her Thoughts about Death I interviewed Leah, a candidate for a kidney and pancreas transplant, for the first time six months before she underwent a transplantation operation. At that time, her general condition was very poor. She was a small woman, very shrunken, about forty-five years old. She was weak and her face was gray. She appeared to be exhausted. Only the rapid flow of her speech and the sparkle in her eyes indicated that she was not completely desperate. She was very pleased that I had come to share her thoughts, anxieties, pain, and suffering. She had suffered from juvenile diabetes, an illness-causing malfunction of the pancreas, for forty years and had spent most of her life either in the hospital or in contact with other medical establishments. The diabetes deteriorated and eventually affected her bodily functions. In the end her only hope of survival was to obtain a double transplant of a kidney and pancreas. We discussed the refusal of many Israelis to donate organs from the bodies of people whom they had loved in life. Leah said, "You know, two weeks ago there was a man here in the hospital about to die. He was already clinically dead; his brain stem had stopped working. The doctors approached the family about agreeing that his organs be transplanted but they refused. As it happened, his kidney and pancreas would have suited me. The doctor told me, 'We even lied to them; we told them that the organs were for a little child. But nothing helped.' I find it difficult to understand such people. Where is their logic? Do they live in the Dark Ages? When you bury the man you loved, do you think that his flesh will endure? Open his grave after a few months and you will find nothing but bones. No flesh at all! Do you mean to contribute to

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the longevity of worms? Is that better than saving the life of another human being? Oh, God! The very thought is unbearable, that the worms will eat my flesh after I die and am buried! I would prefer If it were possible to pass parts of me on to another, how glad I would be! The worms have plenty to eat without me! Why worry about feeding them?" Leah's words showed that her conception of death was biologicaltechnical. The body rots naturally. The doctors determine the moment of death by means of biological-mechanical tests. Sociological literature distinguishes between biological death and social death (for example, Sudnow 1967:74; Mulkay 1993:32). Biological death is connected with social death in the sense that in both cases one accepts that the physical existence of the individual comes to an end. On the other hand, social death is cognitive, cultural, and liable to change. Biological death means that a person ceases to live in the biological world. When social death occurs, the individual ceases to exist from the social point of view. Such a death can occur before biological death. Biological death is remote—it enables us to relate to the body as something integrated, perfect, and complete that has changed into something inanimate and disintegrating, which can be dismantled and taken to pieces. Social death allows the survivors to turn to society for help to deny it. In the case of Leah's relations to death, it was not the death of the ego that threatened her, but the death of the body. Charmaz (1980:78-79) calls such a conversation about death, "neutralizing death by means of hiding feelings." The event of death is made into something universal, general, and abstract. The use of euphemisms like "he has left this world," "is no longer with us," or "has gone" serve to neutralize death. Charmaz says that the chief users of such language are professional people, for whom the words' effect is to turn people into objects. Thus the perception of the doctors and the language they use are identical to the perception and language of the transplant candidates. Charmaz (1980:81) adds that in certain institutions the body of a patient about to die becomes the "property" of the institution; and in some cases the self does as well. The patient changes into an object that the institution works on, not with. Denial of the ego flows, perhaps, from this relation. Leah added, in connection, "Whatever happens, the moment your kidneys stop functioning, you are likely to go." I asked, "Is this a subject you often think about? I mean, everyone thinks their end will come sooner or later and there are all kinds of concepts of death." Leah said, "I'll tell you something. You have dialysis but it's not enough. You have ups and downs. There is nobody on dialysis who has not had downs. These downs bring you to the verge of an abyss. Sometimes you

Life and Death 117 think, 'This is the end.' But somehow you are suddenly saved through the help of somebody or something." I asked, "Could you try to describe for me what you feel when you think, 'This is the end'?" Leah answered, "Yes. It happened the first time I collapsed. The whole concoction of poisons seemed to reach my brain almost simultaneously, almost paralyzing me completely. I couldn't move my hand; I couldn't open my eyes; I couldn't utter a sound. I tried to move my head. I didn't succeed. They dragged me from my bed onto a stretcher. Then they took me to the dialysis unit. They gave me washouts. I was completely helpless. A nurse took me for dialysis. For a whole day he remained at my side. He said 'Good morning,' and I heard him, but for a long time I could not respond. For some time I tried to say 'Shalom' or 'Good morning' but could not get the words out. Then I sank into a feeling of nothingness. I stopped breathing. Later I learned that the entire store of iron in my body had been exhausted. They stopped giving me injections to raise the hemoglobin level in my blood. I sank lower, lower, lower. The doctors didn't know what to do about me. They are very clever, but they didn't understand what was happening to me. They did tests and then more tests and more tests. They couldn't find the answer about what was wrong. They almost choked from frustration. The enzymes in my liver were damaged, and this caused a series of vomiting attacks so weakening that I couldn't move. At the time I was doing dialysis by myself in appalling conditions in a room full of dirt and garbage. Every morning I would think, 'God! I cannot cope; I cannot go on; nobody cares. I am alone in the world. This is it! It's the end of the world for me!' The transplant doctor came to see me. I asked him, 'What are you waiting for? My end?' He responded, 'Such despair! You must not give in to it! You must keep on fighting!' and I said, 'I simply haven't got the strength to carry on.' He said, 'It's not a matter of strength, but of willpower!' He inspired me with a new will to live." Leah describes death as an ultimate end. She imagines death as a state of biological and technical nullity, non-existence, what Bauman (1992:2) calls "absolute nothing!" During one of my visits to the hospital, I accompanied the coordinator of transplants when she met Yossi, who had had a heart transplant. Yossi told us about his fears of death. He said, "I don't discuss this with everyone, but I can tell you two, that I worry about it." Coordinator: "All of us are afraid of death." Yossi: "I realize I won't live to be a hundred, but still—" Coordinator: "Is your fear of death like my fear that I'll be run over in the street by an automobile and killed?"

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Yossi: " N o . For me death is much closer and more definite." Coordinator: " H o w do you imagine death? Will it come suddenly? Or gradually?" Yossi: "My death will be a decline. Going down, down, down. Every now and then another system will stop functioning, until nothing works. Then I'll be dead." Coordinator: "Perhaps you'll have another transplant." Yossi: "That seems an unrealistic idea. I don't think it could save me." Yossi's fear of death is universal. His fear of death is fear of emptiness, of "not being" (Bauman 1992:13). Like Leah, he relates to death as biological death, that is, the end of all biological and mechanical activities of the body. This means that he does not see death as the death of the ego but as the breakdown of the body. Leah's and Yossi's feelings of impotence are identical to those of the medical establishment. It is widely known that sometimes medical practitioners cannot cope with the natural and environmental threats to human beings latent in modern societies. Leah's concept of death does not remain a strictly personal matter. It is connected to the social body, which will either let her die or save her. In our talks I asked her, "Do you think people who have to undergo transplants have anything in common? Does the fact that they are all getting the organs of other people transplanted into their bodies give them a common denominator?" "Yes," Leah answered. "I have spoken to other transplant recipients after their operations. They all agreed that their lives were different, less self-sufficient. They don't take it for granted that they can get up in the morning, can stand up, stretch their arms, and then go off to work, or do something else that catches their fancy. They don't assume their way of living is self-evident, the way they did before the operation. The transplant has made them treasure their lives as something precious. Everything seems to have acquired a different savor. Their values are stronger. They feel as if they have to exploit every moment of life. It is not the life that they were born with; it is a new life, given to them as a precious gift." I asked, "Do you think that the transplant creates new obligations and commitments?" Leah: "Yes. Commitments both to yourself and to society." [Author]: "But it wasn't society that gave you the transplant." Leah: "You're wrong. It was society." [Author]: "So, how should people respond to such a commitment to society?" Leah: "I have found that many transplant recipients take up all kinds of voluntary activities. They also engage in efforts to explain to the public why

Life and Death 119 they need to support organ transplantation. I, too, have become a volunteer and help the hospital coordinator. When they thanked me for helping them, I answered, 'You don't need to thank me. I should thank you again and again. The little bit of work I can do to promote organ donation is only a small token of what I feel. I am grateful to have a chance to show people video films of patients before and after transplantation.' Sometimes I visit the transplantation department and chat with the patients. I may hear that this one or that one is dead. It distresses me terribly. An opportune transplant might have saved the person concerned. I feel about the donors like I do about our soldiers in the Israeli Defense Forces. They save us from the enemy who may come to kill us in our homes. It is exactly the same thing. The soldiers save lives and the donors save lives. Donating organs is no less important than serving in the Defense Forces in war." Leah felt so strong about what she was saying that she banged her fist on the table. She felt that the social body was obligated to provide organs for the body of an individual in need, but the individual was also obligated to the social body. The bodily concepts of transplant candidates can be interpreted in terms of Figure 5.4, presented earlier in this chapter. Their concepts of death derive from their social attitudes toward the personal body and the social body. Candidates relate to death as the biological death of the personal body. Systems do stop working, but the personal body is inseparable from the social body, so the social body can—and must—obtain organs for transplant donations. Through the social body, the individual can evade death and begin a new life. The candidates think society or the social body is responsible for providing them with the possibility of survival. Nevertheless, the candidates and recipients reject ideas of immortality or the possibility that donors continue to live symbolically through their bodies. Joel, Recipient of a Liver Transplant, Describes His Feelings about Organ Transplantation Joel, who works in a paramedical profession, had a liver transplant. He is fifty years old, married, and has five children. I spoke to him on November 28, 1993, in a clinic at the hospital. He described what happened from the moment he first got notice to report to the transplantation unit. Joel: "I received a telephone call at home. 'Come immediately! We have a liver for you!' It was midwinter and snow had fallen. We managed to get a taxi to take us to the hospital! We were very excited." [Author]: "How much time had elapsed since you were accepted as a candidate for a transplant?"

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Joel: "Three months." [Author]: "What did you think about during the three months? I suppose you were worried because you feared that there was probably a tremendous crowd waiting for a liver ahead of you." Joel: "The truth is that I knew nothing about transplants before I became ill. So I didn't grasp the system mentally and never thought about it." [Author]: "Did it occur to you that you were waiting for somebody to die so that you could go on living?" Joel: " N o . I never thought of it like that. I didn't analyze the situation or consider that somebody would have to depart from this life to enable me to live on. It just seemed to be something natural (author's emphasis) that I was going to get a new, healthy liver. When I reached the hospital, they did some tests. Then they prepared me and I had the operation. I don't remember it. The first thing I remember is waking up and seeing a doctor I knew. He asked me, 'What are you doing here?' I answered, 'I have had a liver transplant.' He replied, 'As a matter of fact, you've had two liver transplants. The first one didn't take.' I learned afterward that it was a long story. I was unconscious for ten days. When the first liver was rejected, the doctor called the United States and other countries trying to get a liver for me. He worked on it day and night. Eventually he called the professor in America under whom he had studied transplanting o r g a n s — His professor gave me the liver of a man from Harlem, in New York. They flew the liver by Concorde jet to London. From there it was flown to Israel by the Israel Aircraft Industries Corporation." [Author]: "You said that your liver came from Harlem. I take it that this means it was the liver of a black American. Did this worry you?" Joel: "Black, Chinese, Japanese, I didn't care. The only thing that mattered was that I was saved. Without that man's liver I would not be here now, talking to you." [Author]: "Did you ever learn anything more about the donor as a person?" Joel: " N o . I wanted to, but the hospital told me the information was restricted. As soon as I got home I organized a party and invited all the doctors and the rest of the medical staff involved as guests of honor. So, God be blessed, here I am, eight months later, alive and well." [Author]: "Do you feel that you have changed as a result of the transplant?" Joel: "Do you mean physically or spiritually?" [Author]: "Spiritually." Joel: "I'll tell you something. I suffered a great deal from my illness before the transplant. I was sort of blown up. 1 was ashamed to go outside. The children would laugh at me and mock me, saying, 'Look at the pregnant man.' I was constantly worried about what would become of my wife and children if I did not recover. Today all that has passed. N o w I can live a normal life. I don't know if I am changed, spiritually."

Life and Death 121 Joel does not relate to either of the people whose livers were donated to him, or to their families who made the decision to donate. For him, the livers were brought to him in the hospital by a "natural process." Neither he nor any of the other recipients whom I interviewed ever thought for a moment that by having the organs of these people in their bodies, they were continuing the existences of the donors. In an article that appeared in Maariv on April 6, 1994, titled "Imagine that your son was waiting for a transplant," Adi Katz described how some people who had received transplants refused to meet the parents of the donor whose organs had been transplanted into them. The recipients explained this refusal by saying they did not want to live in the shadow of someone's death or serve as that person's monument. This rejection of the concept of conferring immortality to another is obviously due to a desire to go on living without feeling an impossible commitment. At the same time, the concept of immortality does exist among recipients with regard to themselves. All of them described the transplantation as a rebirth. Many of them now celebrate two birthdays: the date of their natural birth and the date of the transplantation. As opposed to the attitude of the recipients and the medical team that no immortality has been conferred on the dead donor, the families of the donors all believe that procuring this type of immortality for the deceased is an inseparable part of their decision to agree to the donation. SOCIAL CONCEPTS OF DEATH AND IMMORTALITY AMONG FAMILIES OF THE DONORS The relation of the donor families to death derives from the need to come to terms with the death of a loved one. Bauman (1992:3) explains that, for families, physical death does not put an end to the importance of loved ones. The death creates a vacuum in their lives and causes them pain and shock. The families, like everybody else in society, have sociocultural concepts of death. Death is seen first as a biological phenomenon—the end of the biological activity of the beloved one's body. But when the idea of using some of the deceased's organs for transplants is presented to the family, they make no distinction between the body and the ego, or self-identity of the deceased. The Barak Donor Family Describes Their Son's Final Period in the Hospital The Barak family donated the heart, kidneys, and liver of their nineteenyear-old son Naor, who had committed suicide while serving as a soldier. They requested that the recipients of Naor's organs maintain contact with them.

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The family has two other children, younger than Naor. I interviewed the family in their home about eighteen months after the tragedy. They lived in a spacious ranch house. I spoke to them in their pleasantly furnished lounge. A highlight in the room was a picture of Naor, a sturdy, good-looking young man. The parents described him as very sociable and energetic. They showed me his room, which they had preserved just as it was when he killed himself. The whole family gave the impression of being united and very warm, although only the parents participated in the interview. They were very open to questions. The mother explained, "Naor was brain-dead from the moment he arrived in the hospital. In fact, I was the only one of all those present in the hospital that refused to accept that it was all over for him; 1 still believed that he would pull through somehow, because a mother knows the condition of her child. All the time they were keeping him going by means of an infusion. I still believed that I would get him back. I realized that he might be a vegetable, blind, just a lump of flesh. But he would still be my Naor. All that time I thought how I would plan my life together with Naor. And I said, 'Let them leave him his ears, at least, so that he can hear his friends speaking to him.' But then they came and told me, 'That's it!' But I thought that if my husband knew what they were planning to do, he would tell me. It seems to me wrong to wait until the very last moment. For, at that moment, the reaction is one of loss, even if you already know there is no real chance. If they tell you in advance that they want the organs, you have time to think, even if you are very angry. In my mind it is wrong for the doctor to wait until the last second to say, 'Your son is dead. Don't mourn now. We need his organs!' I think doing it that way is terrible! The medical team who want the donation of the organs should not expect the parents not to mourn; they should understand how difficult it is to agree to their request! For a mother it is still her son lying there, even if he is only a lump of flesh and the doctors see him only as organs." The father intervened, "They examined him from nine at night until four the next afternoon—a period of nineteen hours. At midday, they took him from the neurosurgery department to the respiratory intensive care unit. They told me, 'He'll be better off there.' I assumed, naively, that they meant that the move would be better for him, that he would get better treatment that would help him to recover. Afterward I discovered that what they meant was that in the respiratory care unit, they had refrigeration facilities to preserve the body and the organs." There was clearly a difference of understanding between the medical system and the parents. Naor's parents were relating to their son as a whole, as body and soul, still having self-identity as well as his physical body, while the doctors were relating only to a body (see Hogle 1995 and Sharp 2 0 0 1 , who describe the impersonal way professionals refer to donors' bodies).

Life and Death 123 The father said, "At three in the afternoon they told us we could go in two at a time to visit him. Generally no visitors are allowed to enter the respiratory intensive care unit. I told members of the family and friends to go in and see him. I never thought that the doctors really meant, 'You can go in to say your last good-byes.' I kept saying, 'Go in! Go in to see Naor!' I still didn't realize that I was telling them to say good-bye to him forever." The mother said, "They said to me, 'You had better go in now. You won't be able to later.' I answered, 'What are you talking about? I'll go in whenever I want to.'" Naor's mother resumed, "I think it's wrong to wait till the last moment before they say to the mother, 'Your son is dead! He's gone! We want his organs! Don't mourn now!' I think that doing it that way is terrible. To the doctors he may have become only organs, but to me, his mother, he was still my son Naor." Naor's father repeated, "I look back and I must admit that they could not have done anything else. They do their very best under the most terrible conditions. A young man is dying, and they have to tell his parents that they must abandon even the faintest glimmer of hope. At the same time, they want to transplant his organs quickly, so that others may be saved. I don't envy the doctors. It is not a pleasant situation. At some stage, the surgeon said, 'Your son has three hours to live. A man in his condition, if he is very strong, may hold on to life for twenty-four to forty-eight hours, but that's very rare.' However, I still didn't grasp what he was trying to tell me. Looking back later, I realize he was trying to say that there were no miracles in such cases. When he saw me a little later, he tried to slink away without talking to me; but I buttonholed him and he said, 'No change.'" The parents' description of their son's last hours substantiates the view that they didn't really understand at the time what was happening or what would be expected of them. It also exemplifies the gap between their concepts of death and those of the medical team. The social worker, whose official task is to inform families of the death of a loved one and to ask them to donate the organs, told me, "Generally, when the family agrees to donate the organs and death is imminent, I advise them to say farewell to their loved one and then to leave the hospital at once, while the dead person still seems to be alive, so that they will not have to face the problematic nature of the actual moment of death." At a conference organized under the aegis of the European Center for Transplantation in March 1993 at the Beilinson Medical Center, the representative of the Center described a special educational program in Holland for transplantation coordinators. In this program, teams of hospital personnel play games where they role-play families who are potential organ donors. The object is to teach members of the teams to

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identify with the families in real life. Obviously, medical personnel involved in convincing families to donate organs would not need to play games like these if they normally evinced sufficient empathy for the members of such families. Amir (1987) calls the practice of putting up death notices in Israeli hospitals "lowering the curtain." These notices indicate that the hospital has concluded its involvement in a case and has returned to its normal routine. She points out that a gap is created between the medical team and the family experiencing the personal loss of the self-identity, the ego, of the deceased. Many families accept the biological death of the body, but the selfidentity continues to live on in their memories. For them, it also continues to live on through the deceased's organs that they have donated. In many families the agreement to donate organs is inspired by the belief in a sort of immortality for their loved one; it is one of their ways of dealing with biological death (Lifton 1979; Bauman 1992). In defiance of prevalent customs and against the advice of the medical team, the Barak family managed to make contact with the recipient of Naor's heart and to establish a warm relationship with him. Yet it is interesting to note that they did not mention him by name. They referred to him as "the heart recipient." They displayed similar reticence when referring to the recipients of Naor's other organs. [Author]: "At your meeting with the heart recipient, were there moments when you thought, i t is Naor's heart that is beating next to us'?" Naor's mother: "Yes. It was a very moving experience to see a man whose heart was N a o r ' s . " Naor's father: "I don't think it was that simple. That man was very different from Naor and our conversation with him was general and had nothing to do with Naor." Naor's mother (hotly): "I couldn't see Naor in him from any point of view. Naor was a very special person, completely unique." She points to the picture on the wall. "This picture is closer to the real Naor than that man was." N a o r ' s father: "That picture was taken three years ago." Naor's mother: "We were talking to an adult, not a young man or a small boy. Our reaction to meeting the recipient might have been different if the transplant had gone to somebody Naor's age, or at least to a young person. Then, we might have thought that we were seeing a continuation of Naor, that he was still alive. But not this way." Naor's father: "We sat with the recipient on Saturday and I couldn't look at him and think that he was N a o r come back to life. He was just another person added to my long list of friends. We went for a walk. On the way we met neighbors. I introduced the man as the recipient of Naor's heart

Life and Death 125 transplant. But I did not relate to him as if he were Naor come back to life. In my inner heart I reject the concept that he is carrying on the life of somebody like Naor, who is biologically dead. Otherwise, the relationship would become impossible." [Author]: "In an interview you gave to a reporter from La Isha [a wellknown women's journal], you said that you did see a sort of continuation through the transplants." Naor's mother: "Yes, I see the perpetuation of Naor's memory, but not of him, physically, as a person. During the year after he died, I spoke about him every day, and it is terribly important to me that we talk about him all the time. The transplants help to perpetuate his memory consciously or subconsciously, but in no way do the recipients provide a substitute for him living and having children of his own." Naor's father: "It will take a very long time for us to forget Naor." Naor continues to exist in what Lifton (1973) defines as symbolic immortality: in the memories of people, in memorial articles about him, and also in his transplanted organs. In fact, for the Baraks, Naor remains their nineteen-year-old son, a bachelor without a profession, still dependent on them. He will remain like this forever in their memories. [Author]: "Would you describe your attitude after his organs were transplanted as rational? Didn't you adopt it only after agreeing to the transplants?" Naor's father: "No!" Naor's mother: "I have developed a philosophy for myself about everything that happened. You have to hang on to something. I don't know whether what we did was good, or even why we did it, but it helped us. There are all sorts of stories about reincarnation, the rising of the dead, the coming of the Messiah. We reject these ideas. If we were to think about what or how it was done, we should never get over it. That's a fact. We have to build on what was good in what we did. The man who got the transplant is not Naor. Yet Naor still lives for us. When we talk about Naor we remember him, but it is more than ordinary remembering." A psychologist who had a heart transplant told a newspaper that he did not want to have any contact with the family who had donated the heart of the person they loved. For, although this had saved his life, he did not want to serve as a memorial shrine for the deceased person. The Baraks commented that they did not agree with this point of view. Naor's mother: "What harm could such a meeting do? What was he afraid of?"

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[Author]: "What arguments do you recommend should be used in promotions to encourage Israeli families to donate organs for transplantation? Would you say, i t could happen to you!' or 'Why not help somebody continue to exist after biological death?' or 'Perpetuate the memory of your deceased loved one'?" Naor's mother: "Perpetuate the memory! That was what actuated me. I tell the families I talk to that if they donate organs, they will perpetuate the memory of their loved one just as we did." It is interesting that there is a tendency for parents to donate the organs of suicides. Charmaz (1980:272) points out that in cases of suicides the relatives get little social support just when they need it most, because they feel guilty and helpless. I think that the family's decision to donate the organs is made because they feel that giving the organs to the social body will rehabilitate the person who committed suicide and thus they will gain the support they need so badly. At the same time, having the power to make such a major decision will help to overcome their feeling of helplessness and put them in control of what had seemed to be a hopeless situation. The newspapers reported that Naor had committed suicide. I asked Naor's mother and father whether the fact that Naor had taken his own life had influenced their decision to donate his organs for transplantation, when they found the report to be true. Naor's father: "The answer is unequivocally no! The cause of death was not a consideration. There is not the slightest connection." Naor's mother: "Are you suggesting that we wanted to compensate or cover something up? Certainly not. After Naor's death, there were all kinds of articles about suicides among soldiers. You might laugh, but I think that I found some sort of comfort in the thought that Naor may have chosen to die, consciously and with intent." Naor's father: "We never tried to hide the fact that Naor committed suicide. We know that it was a sudden decision from pride or sensitivity, because he had made a mistake for which he paid with his body." Naor's mother: "I suppose that some people expected me to walk around with my head down, because I was the mother of a suicide, but I never saw it that way." [Author]: "I have found that more parents of soldiers who were killed in accidents or committed suicide donate organs than parents of soldiers killed in battle or as a result of terrorist actions d o . " Naor's mother: "I can explain why this happens. It is more than enough that a soldier who was killed in battle gave his life; he doesn't need to give his organs! But I am not sure that all bereaved parents think in this way."

Life and Death 127 Naor's father: "The fact that he is not here caused us sorrow and pain, and made us agree to the donation. How he went was irrelevant." Naor's mother: "We have no doubt that Naor would have approved the donation of his organs. That was the kind of person he was: enlightened, beautiful, enchanting, and governed by his conscience. Some of the newspapers tried to find out what my reaction was and whether it had changed my personality. Of course it makes a difference that something has been torn out of me." Naor's father: "The fact that he isn't here makes me angry, but that he went in the way he did, did not affect how we felt and what we did." The parents deny any connection between the cause of their son's death and their donating his organs for transplant, but they don't deny the need to grant meaning to his death. From data supplied by the coordinator of transplants at the Israeli National Center for Transplants, about 90 percent of families whose loved ones have committed suicide donate their organs. These families think that since suicides take their destiny into their own hands, the family is free to do what they wish with the body. However, it seems to me that the sociological explanation is more correct: that they desire to be part of the social body and bind their loved one into it, by means of the donation. Because transplantation services require organs in a very healthy state, donor families are generally those who have lost young relatives whose physical conditions warrant the use of their organs. In the main, these young people have died suddenly and due to some sort of trauma. The shock of the death is acute for the family, who want to give meaning to the loved ones' lives and deaths. Organ donation is an acceptable social-cultural way of doing so. New immigrants, too, are frequently among those who donate organs of their deceased loved ones, probably because they believe that this is a way for the deceased and themselves to become absorbed into the social body. Throughout the entire period of my research, there was not a single donation of the organs of a soldier killed in battle or in a terrorist action. The transplant coordinator pointed out that it's generally impossible to take organs from victims of such disasters because of the condition of the bodies. However, when I raised the question of how the public reacted to the possibility of taking organs from such bodies, she replied, "I don't know. I really don't know." I had a feeling that medical people are reluctant to try to cope with the problem of suggesting organ donations in such circumstances. The understanding currently accepted in Israeli society is that organ donation is a way of ensuring acceptance into the social body. Thus, fallen soldiers and victims of terror are not expected to donate organs because they are automatically accepted into the social body.

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The perceptions of death of most of those involved in organ transplantation are apparently deeply rooted in social concepts common in Israeli society. THE PERCEPTION OF DEATH IN ISRAELI SOCIETY In Israel, as in other Western societies, death is presented with great respect when it is related to the social body, such as the death of a soldier in war, when the personal body becomes symbolically part of the social body. Researchers (for example, Palgi and Abramovitch 1984) point out that there is a connection between an individual's concept of death and the collective experience of it. Gilaam (1993) contends that Israel is a country where bereavement for the deaths of many young people is a daily experience, giving rise to feelings of continuity and a common fate and strengthening collective bonds. Feiffel (1987) suggests that the boundary between the individual and the community tends to blur and that the stress is on collective responsibility. Israeli society correlates heroic death almost exclusively with the heroic death of soldiers (see Palgi 1974; Witztum and Malkinson 1993; Azaryahu 1995). Other forms of death, such as death in a road accident or as a result of a brain hemorrhage, a malignant illness, or suicide are not considered as having social significance and therefore are not categorized as heroic death. Almog (1991) points out that different connotations are used to describe deaths from different causes. These connotations include the use of words and expressions like died, murdered, fatally injured, killed, fell, lost, passed away, left us, and so on, and stress the discriminations that Israeli society makes between different kinds of death. Heroic death is when one gives one's life for the sake of one's country or to carry out an ideology. The readiness to sacrifice one's life is a most important factor in the determination of heroism. To die in a military accident is the result of a blunder. To die in a terror attack is bad luck. Both are considered bad social deaths. Heroic death and the need for heroes is current in all societies, each of which establishes for itself what defines a hero. People linked to heroes who have given up their lives seek social recognition for having contributed to supreme values (Becker 1973:5). It is in this context that the attitude to organ-transplant action should be examined. The donor families cope with bereavement due to the deaths of young people in this same social, cultural framework, using ideas current in Israeli society. Most potential donors are young people who have lost their lives as a result of such unheroic causes, in the prime of their lives. Donor families also lose their young suddenly and "prematurely" (Palgi 1974:11), although not through deaths considered heroic.

Life and Death 129 The families have to decide whether to donate organs and feel part of a collective shared density with some kind of responsibility to others or to shut themselves off in their own bereavement. If the family believes that by means of organ donation they can give meaning to death and that organ donation enables them to perpetuate the memories of their dear ones, they will give their approval. If, on the other hand, a family feels that they are outsiders or if the death is already considered a social death, the family will refuse to donate organs. Donating organs can be considered a heroic act because it is an act of giving and even of sacrifice for the benefit of society. By means of organ donations, families can give meaning to the deaths of their deceased and can be identified with the social group even if, at first, the deaths were not heroic.


L.Kapler 6

In Their Death, They Will Their Lives to Others This chapter returns to the original questions of how body organs become exchangeable socio-cultural resources and how exchange relations are made possible by their transplantation. The discussion of these questions is based on the theoretical framework presented in Chapter 3. In every society, exchange relations are the conclusion of the interaction between the cultural rules that dictate the framework of the activity and the comprehension of the participants in the action of the exchange, which is also a socio-cultural consequence. To some extent, the process of exchange is both dictated in advance and also given over to the control of the participants in the action. The exchange can be implemented only if there is agreement between all the parties and if they have the will to act in unison. The most important component in organ transplantation is the object that, it is hoped, will be transplanted—a human organ carrying a unique, symbolic burden. Its cultural character and the fact that it belongs to a certain cultural category make its transfer possible, determine its value, and dictate to a considerable extent how the whole process is put into effect. I seek, therefore, to open discussion about the objects exchanged in organ transplantation. HOW DOES A BODY ORGAN BECOME AN EXCHANGEABLE OBJECT? Anthropologists and sociologists who study the subject of exchange have pointed out the existence of a social assumption that there is no realm in which exchange relations cannot apply. However, exchange

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relations are not necessarily economic matters; and in Israeli society, as in many Western societies, the body and its parts constitute a sphere in which exchange relations can apply, but organ traffic is officially forbidden. From time to time an attempt is made to sell human organs. It seems to me that people do not do so to make money from their organs but because they wish to mobilize support and social assistance. Yediot Aharanot published an article by David Regev and Lior El-Hai on January 2, 1994, which cited a small advertisement in the weekend edition: "A resident in the south of the country wants to sell a kidney. Please apply to Vera ." Then the article gave particulars about the seller and related the story of what had inspired Vera to offer one of her kidneys for sale: Vera bought an apartment by taking out a mortgage, but she is now unable to meet her payments. She is asking for $70,000 for one of her kidneys. So far, she has not found any buyers. Vera and her husband, who is an engineer, aged forty-eight, immigrated into Israel from Uzbekistan with their two children. Her husband found work. Although Vera, too, is an engineer, she stayed at home to look after the children. Recently they bought an apartment in Ashkelon, and they must pay NIS 700 [about $165) a month against their mortgage. Vera claims that it was impossible to cope and meet their obligations. Without consulting her husband, she decided to sell one of her kidneys to raise the money to repay the mortgage. Nobody had contacted her before or after she inserted the advertisement in the paper about selling her kidney. The article stresses that selling an organ is not a normal action in Israel and is even prohibited by law. The reason given for disclosing the details about the advertiser and describing her distress was a desire to issue a call for help on her behalf, and not to promote a financial deal for her. The same article describes an attempt by another person to sell a kidney and a lung. Eli Itri, twenty-five, blamed financial miscalculations for his decision to sell his organs. He told the interviewer that his financial position had become so desperate that he had to raise NIS 45,000 (about $10,500) somehow to pay his debts. The banks were not honoring his checks and he was disappointing friends and relations who had helped him, letting them down. Some had signed guarantees for him and were being sued. Eli said, "Everyone thought that I was a cheat and a swindler. But I simply have no money or resources at all, apart from the organs in my body. I dread having the operation, but I simply have no alternative." Another example was published on July 5, 1996, in Maariv. The weekend supplement exposed a deal in which organs had been apparently traded. The story aroused a public outcry, resulting in the appointment

They Will Their Lives to Others 133 of a commission of inquiry by the Ministry of Health, leading to the temporary suspension of the person responsible. The article concentrated on the financial aspects of the deal. Unlike most other articles about transplants, it did not mention altruism or courage, or refer to the proposed transplant as a donation. Under the headline, the following appeared in bold type: Goods for sale: human kidneys. Price: $15,000-$30,000. Purchasers: affluent patients waiting for organ transplants. Sellers: people in distress, most of them Palestinians living in the occupied areas. Agents: Arabs from Galilee. Agent's commission: thousands of dollars. The article added, "This happens in broad daylight at the Assuta and Beilinson hospitals." The tone throughout the article was one of censure; the proposed commercial organ transplantation was obviously considered to be an immoral action. Six years later, in July 2002, Maariv published the story that fifteen single mothers were selling organs from their own bodies in order to buy apartments. R. was quoted as saying, "I am willing to sell everything to whomever offers the higher price: a kidney, part of my liver, marrow, or ovule. I am young and healthy and I do not have any genetic illness. I have no money to pay the rent and I wish to have a house of my own—four walls and a roof." In addition, people offer their organs for sale on Web sites. In some ways the issue of trading with human organs always existed in the background but was not discussed openly and officially. In 1998, Ashkenazi Chief Rabbi Israel Lau declared that the Jewish law permitted the sale of organs from a living person, if their harvesting did not harm that person's health, but the Minister of Health Yehoshua Matza opposed this. Matza said that it was unthinkable that people should bring bread home by selling their organs. He promised to fight with all his might against the sale of organs (Siegel 1998). The first time a serious discussion on this topic was held was February 2, 2000, when the Science and Technology Committee of the Israeli Parliament (the Knesset) met to discuss whether trading in human organs for medical transplantation should be permitted by law. Professor Asa Kasher, a philosopher and an Israeli national prizewinner, said, "Trading in organs means a vicious disrespect for the human being. Neither a person nor his organs are property. Thus, it is forbidden to trade in these objects, although one may be rewarded for providing an organ for transplant. On the other hand, we cannot accept the norm that exists in some countries, where corpses are the property of the state, and the state can do what it pleases with them, including using them for organ transplantation. Making people's bodies or their organs into negotiable objects is unacceptable." Most of the others present at this committee meeting rejected the idea

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of trading in organs. Their objections were based primarily on moral and humanitarian grounds. In 2 0 0 1 , the Israeli Health Ministry drafted a bill to regulate organ donations by live donors (Siegel 2001). The bill proposed that only close relatives, such as a spouse, a common-law husband or wife, a parent, son, daughter, brother, sister, grandfather, grandmother, uncle, aunt, or cousin be allowed to donate an organ to a relative in need. Non-relatives wishing to donate for altruistic reasons could do so through a very careful procedure supervised by a ministry assessment committee; this was designed to prevent organ sales. The proposed bill also assigned a financial compensation from the National Insurance Institute to people who agreed to donate organs, covering expenses and loss of income from temporary inability to work. The process would be carried out by the Israeli Organ Transplant Institution and would require approval by a special seven-member committee operating in each hospital, thus avoiding any negotiations between the parties. A year later, before the proposed law was passed, in a symposium held at Mishkenot Shaananim in Jerusalem, a group of doctors, lawyers, rabbis, philosophers, and ethicists debated the ethics of purchasing organs for transplantation. They did not reject out of hand the conceivability of purchasing an organ for transplantation. In this they appear to have accepted the view held in many Western countries (Daar 1992; Marshall et al. 1996; RadcliffeRichards et al. 1998), as reported in proceedings of the Bellagio Task Force (Rothman et al. 1997; Rothman 2002). Many of the religious participants supported the idea of some kind of compensation for the donors. In this they followed the Ashkenazi Chief Rabbi Israel Lau's interpretation of the Halachah that the supreme importance of saving a life was not compromised if money changed hands. Another issue raised was that people should be free to do whatever they wished with their bodies. A person who sold his kidney was compared to an athlete involved in a dangerous sport. Conversely, the participants who opposed the conceivability of compensating the donors claimed that a person did not own his body. They were also outraged at the idea of the poor being exploited for organ donations. I believe that the issue of compensating donors will remain on the Israeli agenda until medical technology learns how to create or clone artificial organs, or how to use animal donors. Currently, society generally frowns on attempts to transfer body organs as part of a financial deal. However, from the cultural aspect they may be transferred from the ownership of one person to another if there is no financial exchange. Organs may be donated, thanks to socio-cultural concepts regarding body, life, and death. Previous chapters dealing with death and the body describe the different concepts about everything relating to death and to the bodies of the participants in transplantation transactions. By reason of these

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concepts, it is possible to place organs in the category of exchangeable objects. The medical team relates to the body on a physical level. Members of the team consider the body either as a biological system or as something analogous to a machine. The team relates to itself as part of the social body, which enables it to perform the exchange, because the social body authorizes the team to mediate in an action that represents progress and modernization. Perceiving the body as a biological system or as something analogous to a machine also dictates the doctors' perception of death. The medical team defines death by biological and mechanical means. This perception makes it possible to relate to the body or parts of it as exchangeable objects. Thus the exchange is perceived in scientific and economic terms. How this outlook is expressed in practice may be seen from what took place at a conference of transplant coordinators organized at the Beilinson Medical Center in March 1993. During the conference, an emissary of the European Center for Transplantation described an educational program prepared for transplant coordinators in various European medical centers. In the course of that program, simulation workshops were held to teach medical teams to empathize with the families they would approach with requests to donate the organs of their deceased loved ones. In one stage of the simulated role-playing, the participants tried to learn how to cope with a family's feeling of complete desolation from the pending death. They were asked to describe real experiences in which they had lost something that they valued. In the next stage of the role-playing, they were asked to describe how they felt when they lost a person dear to them. The emissary of the European Center for Transplantation outlined how the participants described the loss of a thing and the loss of a person in one breath, thus apparently equating such losses. From this, the emissary concluded that there was a parallel between a lost thing and a lost person. Relating to a body organ as if it were part of a machine makes it possible to relate to it as a mechanical object. Hence, it is possible not only to transfer it from one owner to another but also to relate to it as an object that is salable. However, since the medical team functions in a cultural context that does not recognize the possibility of the sale of an organ, such a sale would negate the team's power and its authority. In the course of the meeting, a coordinator from a certain medical center in Israel said that they used similar role-playing in simulation workshops in Israel. Admittedly, body organs are not salable, but they are exchangeable. They are presented to the public as rarities. The stress is always on a "serious shortage" of organs. This approach not only raises the value of

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the organs donated but also the social prestige of the organ-transplantation operation and of those participating in it. Members of the medical team attending this conference presented the cultural perception of organ transplantation in a very favorable light and, as if they were official representatives of society, urged the audience to adopt these perceptions. Thus the doctors not only related to the social body as something that gave them the authority to perform transplant operations, they also tried to convince the public that the social body endorsed organ transplantation as something of major social value. They presented the actual transplant as a technical procedure that was made possible by scientific and economic progress in a modern society. This theme was stressed at conferences and during study days. It is no wonder that in a competition at the Rabin Medical Center for the best poster promoting signing of donor cards for the Adi Association, the first prize was won by a poster stating, "1 = 7 + 2! One donor can save the lives of seven people and the eyesight of two more!" This poster was prominently displayed at the Center. Candidates for and recipients of transplants are influenced a great deal by the weltanschauungen of the doctors, because they are dependent on them. The relation of recipients to the physical body is similar to that of the medical team. They see it as a machine and assume therefore that malfunctioning parts can be exchanged for new parts. They deny the existence of an abstract body, although at the abstract level they recognize the existence of a symbolic exchange between life and death. They define death biologically, a definition that mokes it possible for another body to become an exchangeable object, and through the mediation of the social body this can give them life in exchange for death. While it is an acknowledged fact that the organs are the objects actually transferred, they also symbolize the exchange between the death of the donor and the new life that the recipient will gain. Thus the death of somebody else gives the recipient the privilege of continuing to live— they are very much aware of this and grateful for it. Yochanon Kfir, the recipient of a heart transplant, said, "One Friday, after I received the transplant, I suddenly saw two candles in my room in the hospital. What did 1 do? I lit one candle in memory of my unknown donor to thank him for the gift, and I lit the other in the hope that I would enjoy good health and would be able to earn a good living to provide for my family." Naama Erez, who had received a kidney transplant, said, "I know that somebody who was young donated the kidney to me; this is what I was told. I feel that something is missing, because I was not able to meet the family of the donor and to thank them for what they gave me. I don't know who they are, but I would like them to feel that their loved one did not die in vain, and that one of the donor's organs continues to live

They Will Their Lives to Others 137 in me. I want to say to them personally, 'Thank you! By virtue of your generosity, I am alive and functioning well.'" In their thinking, the donor families separate the self from the corporeal body. The body for them is an exchangeable and divisible object. The abstract self is not exchangeable. It can be perpetuated in memory. The social body mediates both this perpetuation and the donation of the organs for them. Death separates the self from the body and makes organ donation possible. Members of the donor families express these perceptions repeatedly. In the words of Nofit's mother, "The main thing is that Nofit's organs were accepted by the recipients' bodies and that Nofit will continue to exist, even if her existence is only possible through someone else's body." The discussion of an exchanged object does not deal only with the practical possibility of effecting the exchange, but also how we determine the value of the donated organs. This value is not something absolute but is determined in the process of the exchange on the basis of mutual agreement by the parties to the transaction, on the basis of supply and demand (Appadurai 1986). The participants do not necessarily think in terms of profit and loss, but the way they will come out of the transaction shows that they get some reward. According to this line of thought, the body organs acquire a value during exchange. This value is not absolute and cannot be measured in terms of money but has a symbolic value that emanates from three things: first, from the transplant recipient's desire to continue living; second, from the willingness of the donor family to participate, so that they will feel credited with belonging to the social body by contributing to the continued existence of the recipient; and third, the increased prestige of the members of the mediating medical team and the greater social awareness of the importance of their social function. Human organs are objects that can be physically transferred, but this exchange should not be interpreted narrowly as only a physical movement of an object from one owner to another. It is a symbolic transfer of the abstract values of life and death. Fundamentally, there is a giving of life, implemented by means of transferring tangible objects in the form of body organs. Life and death are integrally associated with the body. When the body ceases its activities and dies, it becomes what Baudrillard (1993:160) calls a non-body. The body is no longer what it was. Precisely at that moment, it becomes a set of exchangeable objects. Parts of it can be transferred to another body. As a result of the body's death, organs can be transferred to another body and can continue to live as parts of that new body. Bauman (1992:127) adds that death makes the continuation and perpetuation of the social body possible. With life, the individual makes the

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existence of society possible and with death makes the perpetuation of memory possible. Thus the society or a social body exists apart from the existence of the individual body that is a member of it. An individual can join the social body by dying, provided that a well-known member of the social group endorses this. Since organ exchange symbolizes exchanging death for life—an exchange between two abstract concepts that cannot be assigned a concrete value— there is a tendency among the participants in transplantation to regard it as an exchange of gifts. The same tendency is found in sociological literature. Nevertheless, in organ transplants all the conditions that exist in personal gifts are lacking. A gift is always something in the possession of an owner that he gives to another; a gift is given as part of a system of relations between the donor and the recipient; a gift generally creates a system of obligations between donor and recipient. None of these three conditions applies in the case of organ transplants. WHAT ARE THE MOTIVES ACTUATING PARTICIPANTS IN THE TRANSPLANTATION EXCHANGE ACTION? The medical team plays a principal part as mediator of the transplantation exchange action. Having control of organ transplants firmly in their hands confirms the authority of the doctors as the supreme arbiters of life and death, because the social body recognizes that their professional medical knowledge dominates this matter. The social body accepts that doctors are experts who can mediate between rational and correct behavior, as defined by the social body, and the individual's desires and feelings. The doctors' knowledge and ability to define life and death earn their patients' faith and loyalty. Thus the doctors make it possible for the families donating the organs of their loved ones to fulfill their wish to continue the deceased's existence through donating their loved ones' organs. It is only possible to continue the exchange process after establishing death. The doctors both validate the moment of death and execute the transplant operations. This increases their authority and enhances their prestige. Every successful operation they perform improves their prospects of getting another donation of an organ for transplantation, which will futher add to their professional and social prestige. One of the strongest motives of the doctors for participating in the exchange action is undoubtedly the probability of gaining higher status in society. Candidates for transplants participate in the exchange action because they hope to receive the benefit of extended life. They willingly place their bodies in the hands of the medical team, and give their consent to the removal of their damaged organ and the insertion in its stead of the transplanted organ of a deceased person. Their physical bodies serve as

They Will Their Lives to Others 139 the means for an exchange between death and life. This ensures the continuation of both their physical and social existence. Thus they earn extended life, for which they pay the price of complete obedience to the orders of the medical team, and dutifully present themselves for the operations when they are requested to do so. Abraham Shavit, who had had a heart transplant, described for me his preparations for his operation: "Look, you want to live! You are ready to let them do anything they want to you, to insert things into you, as long as they give you extended life." The other potential partners in this exchange, the deceased's family, are not always motivated to join the partnership. When a family does not cooperate, exchange relations do not exist. Most families who do agree to donate organs stress that their motives for donating the organs of their beloved are altruistic, that they hope to help others by means of their benevolent deed. Their decision to donate the organs is also actuated by their concepts of the body and death. The more they distinguish between the personal or corporeal body and the self, the easier it is for them to believe that in death the self is separated from the corporal body. This separation enables them to believe that the self will continue to exist in some way after death. This releases them to donate the organs from the body. Tikva Zabar expressed this viewpoint to me. "I come from an environment where people were always interested in the Kabbala and mysticism, and the transmigration of souls. It has always been clear to me that the flesh is unimportant, according to this way of thinking. The moment the soul has left it, the body is nothing. Instead of letting the body rot in the ground, at least let the organs be used to save life." Many families feel that the self can also continue to exist separately by means of transplanting the organs into living bodies. For instance, the mother of Naor said, "I see the perpetuation of Naor's memory through the transplantation of his organs; for me it is a form of his survival, even though I know that it will not really keep him alive. During the year after he died, I talked about him every day. I thought that it was very important that we should talk about him and I felt good whenever he was mentioned. But I also believe, consciously or subconsciously, that his transplanted organs also perpetuate Naor's memory, that through them we have built new generations for him." The self's ability to continue its existence depends on joining the personal body to the social body. Organs are not donated in a personal way, but the exchange is effected by means of the social body. The self or abstract body is perpetuated in this way: the self of the donor continues to exist in the body of the recipient on a personal level, but it also comes to belong to or be part of the social body that made the transplantation possible.

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Many families agree to donate organs to acquire the feeling of belonging to the social body. They believe that giving their consent to the transplantation unites them and the deceased with the social body. A number of examples demonstrate the validity of this thesis. An article written by Yuval Peleg appeared in Yediot Aharanot on April 4, 1995. The content under the headline stated, "The parents of a child without a religion, who died and was not buried, blame the hospital for the child not being buried. They claim that the hospital promised to arrange a place of burial for the child if they agreed to donate his organs, but the hospital did not keep its promise." The deputy head of the Rambam Hospital admitted that lungs, kidneys, and corneas had been extracted for transplantation from the body of Georgi Vipritzki, who died at age fourteen. But he stood firm on the hospital's claim that it never made any promise to the family with regard to burial. Minister of Religion Shimon Shitreet promised that the body would be buried at kibbutz Einat, but afterward it was found that the matter had not been arranged with the kibbutz.1 The father explained, "In the hospital, they told us 'Sign the slip donating the organs and we will take care of the burial.' We have waited for two days and the body of Georgi is still at Rambam." The article also stated, "The boy, Georgi, son of Alex Vipritzki of Tirat Hacarmel, died on the Sabbath after an operation to remove a growth in his head. The problem of finding a place where he can be buried is that although his father is a Jew, his mother is a gentile. As a result, the boy is not deemed to be a Jew. The Jewish Burial Society is not prepared to deal with the body of anyone whose mother is not Jewish. The Christian cemetery will not take anyone whose father is a Jew." The deputy head of Rambam Hospital admitted that organs were taken from the boy's body. Dr. Ben Yishai asserted, "We did not ask for the organs. The magnanimous mother offered them out of altruism, without getting a promise of burial." The doctor contended that the hospital did try to arrange a place for the burial, but added, "We are not a burial society." Friends of the family where they lived said bitterly, "After they have given life to other people, it is impossible for them to find a place to bury their son! It really is a great scandal!" The deputy mayor of Tirat Hacarmel, Zorev Dvir, who is helping the family, said angrily, "The moment they did what was wanted, everyone stopped caring about them." The parents' claim that the hospital had promised to find a burial place for Georgi was denied by the hospital in an interview that I had with

1

Kibbuts Einat has a civil graveyard for burying non-Jewish people. It is a private burial, however, and costs a lot of money.


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one of the coordinators. I was told that hospitals refrained from making such promises, because their policies were that donors should not receive any form of compensation for the organs. But it is not important from the public's point of view whether there was an actual promise or not. Clearly the family understood that through their agreement to give parts of their son's body, he would become part of the social body. Another illuminating article reported an interview with the parents of a young American woman who was killed in a terrorist attack. Zadok Yechezkiel, writing in Yediot Aharanot on April 20, 1995, included a mother's description of a telephone conversation with her husband, when he telephoned her from Israel to the United States to inform her of their daughter's death in Israel. The mother said that her husband told her the doctors wanted their deceased daughter for transplants. "I kept quiet. I did not know what to say, until suddenly he said, 'Rose, you know how much she loved Israel. You know this is the way to leave a part of her here forever.' The moment I heard that, I knew at once that it was the right thing to do." By donating a concrete object such as a body organ to the social body, the families are able to fulfill their desire that they themselves and their departed ones become part of it. This desire actuates 90 percent of the families of people who have committed suicide to donate the loved ones' organs. Suicide is a serious act of withdrawal from the social group. Many families indicate that there is an additional motive that influences them to agree to donate the loved one's organs: the need to give a meaning to death. The death of a beloved young person as the result of suicide or a road accident bewilders them with shock. Apart from the psychological explanation that donating a deceased's organs helps the families to cope more easily with the death, it also makes the death a social matter and therefore entitles them to receive support from society. Bauman (1992:127) indicates that companionship and social support are the sources of the survivors' ability to carry on with their lives after they have suffered the loss of a loved one. Through the death, he adds, the bond with society is strengthened. WHAT KINDS OF RELATIONS DEVELOP IN THE COURSE OF TRANSPLANTATION? Two types of systems of relations are created in the course of organ transplantation: one between the donor family and the doctors, and the other between the doctors and the recipients. On some rare occasions, relations are created between the donor families and the recipients of the organs. However, the medical team is not involved when this happens because it is opposed to such relations. Hence the situation never arises that there are three components in the relation.

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Each of the participants in the transplantation process joins it for different reasons and has a different Weltanschauung in regard to life and death. Furthermore, the relation is temporary and limited to one matter only. A system of mutual dependence develops between the doctors and the recipients of transplanted organs, as was shown in detail in Chapter 2. Although the mutual appreciation between the doctors and the donor families makes the donation possible, the system of relations between them is very limited. When relations do develop between donor families and an organ recipient, donors always describe these as family relationships. In this way they bind themselves to the recipients and try to describe the relationship as natural. In an article by David Levi that appeared in Yediot Aharanot on July 2, 1992, a mother who had donated the organs of her daughter and met sisters of the recipient of one organ, said to the interviewer, "We are one family now. We shall never separate. I want to be her [the recipient's) mother." An article from the same paper on January 2, 1996, by Yuval Peleg and Eitan Glikson, quoted a mother who donated the organs of her deceased thirteen-year-old son to five different children as saying, " N o w I have five children." This mother also appeared on television and said, "We are like one family now." In most cases, the transplant recipients are not interested in such a relationship; their feelings of obligation are already so enormous that they have difficulty coping with them. They explain that they were told in the hospital that it was not desirable that they should establish contact with the recipients, and they do not question this instruction. HOW IS THE EXCHANGE IMPLEMENTED? The process of exchange in organ transplantation transpires with a number of actors who interact only within the frame of this exchange action. As we have seen, the donating family, although not the actual organ owner, gives consent to the exchange of the organs, which are transferred to the recipient. The transaction is effected through one social mediator—the medical team—that extracts the organ from the donor's body and transfers it to another social mediator: the medical team that surgically inserts the organ into the body of the recipient. All the participants agree about the existence of the social body, which determines who should give and who should receive. There is a considerable resemblance to a social bank, but this is a problematic simile. First, the National Center for Transplants is a bank with a database of candidates and holders of donor cards. It is not like a regular bank that holds the objects that should be exchanged, such as

They Will Their Lives to Others 143 a blood bank does. Second, not everyone can be a donor or a recipient. Third, donors can never receive the donated objects back, and recipients can never donate the organs that they have received, nor can they become donors; they cannot donate because of all the medicines they take that affect their systems. The exchange is social and not personal by virtue of the fact that the objects transferred are organs that, although concrete in reality, are also abstract in principle because they are exchange objects between life and death. In this process of exchange, the medical team regards the organ as a national, social, and scientific resource that enables medical progress and begets the personal advancement of the doctors. Hence, doctors exerted great pressure to establish a national center for organs to be used for transplantation. Consequently, the then minister of health, Haim Ramon, set up the National Center for Transplantation in 1993. The minister said during the study day described in Chapter 3, "Today, we take advantage of 20 to 30 percent of the potential organs in the State of Israel. We must bear in mind that organ transplantation saves lives. But here I want to interject a thought that may seem rather crude. Apart from transplants saving lives, in my opinion the establishment of a National Center for Transplantation would save the nation a great deal of money. Every Israeli who goes abroad to get an organ costs us a considerable amount of money. The cost of this practice affects the national economy." From the remarks of the minister, we learn that organs are considered to be a national resource of the whole State of Israel, and that they are not merely the possession of this or that individual; they are a resource, the value of which can be measured in money from the point of view of the national economy. Dr. Eli Katz of the Hadassah Medical Center, who spoke on the same occasion, turned to the students in the hall and addressed them specifically. "Every one of you, when you go home to your family today, must explain to them why organ transplantation is so important to the nation." The medical establishment views organs as a national resource of considerable value. They believe that an educational program should be determined and implemented to promote consent to organ donations. Thus, many study days have been organized all over Israel to promote this cultural change of attitude. Even the Army Broadcasting Service, Galei Zahal, periodically devotes airtime to promote organ donation. Organs are considered a national resource not only in Israel but also in other Western countries. Dr. Katz reported that on one occasion he applied to the European Center for Transplantation with a request for help in his search for a liver desperately required for a transplant in Hadassah. He received the following answer: "We are not willing to talk

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to you or to any other hospital. We will deal only with an organization that officially represents the State of Israel." The fact that people in Western countries sometimes reject the possibility that strangers or foreign residents should receive organs in their hospitals indicates that they consider organs a national resource. One French newspaper headline declared, "French organs for the French." Candidates for transplants and recipients of transplants stress the fact that organs are objects that can be acquired in a social exchange. They believe that they acquire the organs they need from the social body, and not from a particular person. The provision of organs is regarded as an obligation of society to its members. Candidates in particular express this view very clearly. Yochanon Kfir, the recipient of a heart transplant, says about the period before he underwent the operation, "I reflected that I had always volunteered to serve the community in any way I could. I helped rehabilitate drug addicts and discharged prisoners. I transported addicts in my car to the hospital. I helped the elderly. So I said to myself, 'Perhaps God will reward me for what I did.'" He used the word God, but probably he meant society, the social body. From the point of view of transplant recipients, there is what Levi-Strauss calls "generalized exchange." Dvora Namir interviewed Avi Yotam, an Israeli, while he was waiting for a heart transplant in Brussels, Belgium. He told Namir, "In the prestate period I served in the Palmach" [an elite and voluntary Jewish military corps in those days]. "During the last forty years I have served the state and society in every way possible. But, when my heart failed, Israeli society turned its back on me. Israeli society treats its sick as if they were strangers. Why do I have to wait here, alone, for an organ transplant, instead of getting it at home?" (Yediot Aharanot, December 8, 1992). After receiving a transplant, people not only compare the system of exchange to what Sahlins (1972:193) calls "generalized reciprocity" but also express it as a generalized commitment. As they understand it, their commitment is to society. Leah, a candidate for kidney and pancreas transplants, stressed the mutual commitment of society and the recipients of transplants. "When they are back on their feet, many recipients of transplants engage in various kinds of voluntary activities. They promote organ donation every way they can; they participate in every event designed to publicize donating organs. I myself have begun to help in the coordination of transplant services at the Beilinson Medical Center." When I thanked her for granting me an interview, she answered, "You don't have to thank me. We should thank you for publicizing the need for transplants. We know how many people are waiting for organs, how bad the condition of their health is, how anxiously they wait for the


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word that a suitable organ has been found to end their misery! We recipients of organs will do anything that we can to help. We are committed. This is a commitment to society and to the community." The donor families also relate to the system of exchange as a social system. Tikvah Zabar says, "This is definitely a social matter. I would not like to make a big fuss about it, but after donating organs of my loved one I encourage others to do the same by appearing on public platforms and promoting such donations." Tikvah has appeared in the media several times. To the question "Why should anyone want to donate organs to society?" Tikvah answers, "It is like one candle lighting another, without either candle losing anything in the exchange." Giving in all cases is to the social body, and not to a particular person. Families that donate organs generally do not know who receives them. The Barak family did establish contacts with the recipients of their son Naor's organs. They say that although this made the donation more personal, they still feel that basically the giving was to the social body. The mother told me that they first decided to donate the organs and only thought later about the effect of giving. "I did not feel that I merited any credit for what we had done, only that I was grateful that we had been able to do a wonderful thing. We did something beautiful for him, but apart from this, all our lives have been based on giving and we just demonstrated this with his organs. If Naor had known about it, he would have approved what we did." The father interposed, "If it were possible to interview the dead, Naor would not have been angry, he would even have supported the donation." Naor's mother added, "Because he was a person with a wonderful character. As we have said, giving was always something deeply rooted in our family. It was a cause of joy. Great joy. We see giving as a privilege, although I don't like to use that word. But you know that when you give something to somebody who is pleased to receive it from you, it is an occasion for joy. One of the recipients of an organ from Naor was a child. After we spoke to the doctor and he described the child's condition before and after the transplant, we knew how much more Naor would have approved what we had done." The Baraks agreed to make the donation because of their attitude to generalized exchange. Later, when they established contacts with the recipients, the personal note was added. WHEN IS THE EXCHANGE ACTION MADE POSSIBLE? The exchange action becomes possible when all the participants, who each have a different motive for participating in it, agree to do so. Only

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if society appoints somebody—that is, the medical team—to deal with death in health and in sickness can that team mediate and execute the action. The transplant will not be performed if any participant changes his or her mind and no longer wants to make the contribution to the exchange. It will not take place if the medical team decides that they are not certain that the potential donor is brain-dead, or if they are not sure that the organ offered is suitable for the particular candidate. The transplant will not be effected if the candidate experiences a change of mind and refuses to accept the organ. But the main thing that the exchange depends upon is the consent of the donor family at all the relevant stages. Without such consent, the exchange action cannot be carried out on a concrete level or on an abstract level. Families will refuse to donate the organs of a deceased loved one if death does not cause a separation between the personal body and the self, according to their socio-cultural perceptions. In such cases, the families explain that they do not want to cause further suffering to their loved ones who have suffered so much already. Their belief that the deceased can continue to suffer after death demonstrates that they believe that the body and the self have not separated. Another reason for families refusing their consent to the donation of a deceased loved one's organs is that it would conflict with their religious convictions. According to the beliefs of some devout Jews, the integrity of the body must be preserved until the coming of the Messiah, when the dead will be resurrected. The basis of this way of thinking is that the body and the self are inseparable and the resurrection of the self will not take place unless the body is whole. Many people do not know that in the Jewish tradition, one small bone is sufficient for the resurrection when the Messiah comes. Organ transplantation will also not be appropriate if the death was considered by society to be heroic and therefore automatically defined as social. Thus death in the defense of the country unites the personal body of the hero with the social body. The self is perpetuated and becomes part of the social consciousness. For this reason the families of soldiers who fell in action most often do not donate organs. Like organ recipients, families of terror victims are generally not interested in creating these relationships. In their case, they feel they have already done enough to become part of the social body. The exchange relations in the transplantation of organs are summed up in Figure 6.1. An analysis of the social interactions that take place during organ transplantation produces a picture of a system of complex exchange relations. One system is concrete and rational at the level of the individuals participating in the transaction, which enables transfer of the organ from one body to another. The other is abstract and unconscious and is on the social level. This makes possible the exchange of death for life. Both systems depend on each other and are able to exist at the same

Group

Perceptions of the

Perceptions

Exchange

Body

of Death

Relations

Medical

Personal Body:

Team

Concrete/Biological Social Body:

Social and

Possible

Biological

Social Asset Candidates

Personal Body:

and

Concrete/Biological

Recipients

Social Body:

Social and

Possible

Biological

Social Asset Personal and Donor

Personal Body:

Biological

Families

Concrete + Self

Death

Social Body:

Social

Society

Immortality

Personal Body:

Personal

Families of

Concrete + Self

Mortality

Deceased

Social Body:

and

Disregarded

Immortality

Personal Body

Social

Families of

(Concrete + Self)

Mortality

Deceased

Is Part of

and

Social Body

Immortality

Possible

Not Possible

Not Possible

Figure 6.1. Ideologies of exchange of the partners in organ transplants.

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time. Undoubtedly, the exchange of life for death is effected by means of the advanced medical technology used in the transplant operation, but the organ transplantation would be impossible in the absence of social agreement about the nature of the body, death, and immortality. The exchange creates ambivalence. The individuals feel they are free to make decisions, but the judgment that leads to the execution of their decisions can be defined as social and cultural (Bauman 1992:107). joint social thinking is forged in the process of cognitive socialization, which enables man to live in society and to see the world in the same way as other members of the group see it (Zerubavel 1997:195). All people have the basic need for fellowship, and seek therefore to be an inseparable part of the society in which they function (Bauman 1991, 1992). A duality or ambivalence emerges in attitudes to organ transplantation. This appears not only in the way people make decisions about the donation of the organs of a loved one and what motivates them to agree to it, but also in their efforts to preserve the self of the deceased and the existence of the deceased's personal body through the group. This group is composed of many individuals, but it also has an identity of its own. Since the system of exchange relations is not isolated from the social context in which it operates, it must also be examined in the sociocultural context of Israeli society. Israeli society, like many Western societies, is passing through a process of individualization. In other words, social ideology now stresses the importance of autonomous, independent individuals, who relate first and foremost to themselves and to their own rather than their social group's welfare (Dumont 1986:61-62). On the other hand, individual existence is also essential for the existence of the group; thus there may be some areas in Israeli society in which a collective philosophy is strong. Some Israeli researchers have dealt with the difference between the individual and the group. Roniger and Feige (1992) examined social perceptions in regard to generalized exchange, and how these acquire verbal expression in Hebrew words like halutz (a pioneer) and freier (a person who can be taken advantage of easily). These writers point out that there has been a change in Israeli thinking about collectivism, about a society in which the individual contributes from his personal resources for the good of the group, as compared to a society in which the individual focuses on his own good and considers this to be of paramount importance. The old ideal was the halutz; the modern fear is to be a freier exploited by others. Yet the researchers do not think that the change in outlook is complete. The two approaches continue to exist side by side. Israelis still cooperate to achieve the general objectives of the group to which they belong. It is precisely the emphasis on individualism that makes it possible to preserve collective ideas that surface from personal desires and decisions and not as a result of external pressures. Horowitz and Lissak (1990)

They Will Their Lives to Others 149 contend that the bond of individuals with the group in Israeli society is not one of will, but is anchored in law, for instance in the obligations to do military service or to pay taxes. The individualization of society is found in every field in which the individual has freedom of choice. In the economic field in Israel, individuals tend to undertake ventures that are very individualistic and materialistic. Gottlieb and Yuchtman-Yaar (1983) draw this conclusion from their research on attitudes of Israelis toward everything involved in socio-economic policies. Israelis support socialist or collectivist ideology in everything pertaining to national economic policy, but apart from that there is a continuing transition toward accentuated individualism that stresses the well-being of the individual. Ideological interaction between fostering individualism and stressing the importance of the group is expressed in the educational system as well. Furman (1994) describes the process of socialization in Israeli society, which encourages individualism in children when they are very young, and at the same time stresses adherence to the group's collective thinking. Thus in her opinion, an individualist, utilitarian type of Israeli who exhibits a firm bond with the group is emerging. This picture, presented by researchers, suggests that the opposing forces of individualism and collectivism shape friendly exchange relations in Israeli society. I suggest that these relations exist in parallel lines; the individual in modern society feels that he is free to make his own decisions, even if these decisions are also fashioned by the group. Yet in certain fields, the control of the group over the individual becomes exclusive, since these are social matters by definition. Such matters are connected with human existence and in many cases also with death. An analysis of the social relations involved in organ transplantation not only provides explanations for this phenomenon but also contributes to understanding all exchange relations in Israeli society. Organ donation is like a collective act of giving, which derives from a sense of mutual responsibility and a will of continuation; but since the body is considered a personal resource, the decision whether to donate organs is a matter for the individual. The fact that by this act of giving by individuals can become part of the social body demonstrates that there are generalized exchange relations in which one can contribute one's own, personal resource to the collective. The interaction between individualism and collectivism that the above-mentioned researchers deal with also finds expression in the process of decision-making. The medical team, which considers organs to be national assets, must convince the owner of the assets, the deceased's family, to donate them to the collective. As explained, the families of the deceased will only grant the request if they wish to become part of the social body, for by donating to the collective one stresses that one is part of the social body or the collective.

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Another factor that determines exchange behavior within the collective is the connection between the perception of the body and the perception of death. This connection varies with the nature of the death. Israeli society grades death in a hierarchy. Heroic death is when one is killed in war or a terror attack. In such cases, the personal body automatically becomes a part of the social body, because this is a social death. Other forms of death are private, and thus the body remains personal and private. Organ transplantation enables individuals to raise the rank of their loved one's death from private to social death by means of donating parts of the personal, private body to the social body. When families refuse to donate organs, the body of the deceased remains private and so does its death. Only society can effect this kind of exchange. Individuals can decide whether or not they wish to participate in such exchange relations, but they cannot guarantee the implementation of the exchange itself nor determine the reward. One of the great myths repeated in Israeli society is the story of Joseph Trumpeldor, who was killed by Arabs in 1920 while protecting his settlement in the Galilee. It is believed that his last words were, "It is good to die for our homeland." Generations of young people in Israel have been educated and soldiers gone into battle with the spirit of this story. The lesson implicit in this story is that, ideologically, one can contribute one's body or part of it only to the social body. From the point of view of both the donor and the recipient, this kind of giving cannot be a matter for individuals. FINAL THOUGHTS The transplantation of organs, which at first sight appears to be just a technical medical action, is first and foremost a socio-cultural act, in which two aspects of exchange operate. One is concrete and conscious, while the other is abstract and subconscious. In the concrete aspect of exchange, an organ is transferred from one body to another; while in the abstract aspect, two values—life and death— are exchanged. These two systems of exchange are interdependent and make the existence of each other possible. In this act, more than in other social actions, expression is given to the existential perceptions that people carry with them in their daily lives and that establish their social existence. The act obliges individuals to fully consider everything pertaining to the quality of the personal body and its connection with the social body. They are compelled to cope with the concepts of personal and social death. The technological achievements of medicine in modern society regarding transferring parts of one body to another link together the corporeal


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body, death, and society. This gives rise to the need to re-examine cultural perceptions of the body, its limits, and its ownership. The moment the body ceases to function biologically is the moment at which it is defined as being dead from the social point of view. Because of this, the place of the personal body within the social entity must be examined. The degree to which the personal body belongs to the social body and the extent to which the individual has rights of ownership to it must be examined at the moment of death. Hence, questions such as the following are encountered by the exchange participants: Who will donate the organs? To whom will they be given? Can the organs be put up for sale? Such questions cannot be disposed of summarily with the answer that the deceased is biologically dead; they pertain, primarily, to the quality of the social relationships of the participants and the social perceptions that guide them. This book was inspired by the experiences of individuals dealing with death. It has tried to show how their cultural concepts are derived from the situations in which they find themselves. Individuals acquire cultural ideas from the environment and society in which they function, and these ideas provide them with a suitable framework for their existence. To a certain extent they inherit the right of choice, but this right is affected by a variety of cultural perceptions. The transplantation of an organ involves bringing together individuals belonging to three separate interest groups: the medical team, the candidate for the organ, and the potential donor family of the deceased. Each group has its own outlook about death and about everything affecting the body. The ability of these people to enter into a system of exchange emanates from a tacit assumption accepted by them all that it is a social action. Each group has different interests, but they all come away from the agreement to transplant the organ with compensations that match their expectations. The exchange makes it possible for all the participants to feel that they are part of the social body. This integration is total. The object in the process—the transplanted organ—acquires an absolute value, which is a symbolic social value. All transplanted organs have the same value, irrespective of the gender of the donors, their social status, whether they were friend or enemy, and whether in their life they were in the top or the bottom of the social grade. The participants in the exchange evaluate the object according to what they have separately obtained from the organ transplantation. On the personal level, the value of the object can only be measured symbolically, not objectively. The exchange systems implemented during an organ transplantation are not examples of the classic exchange systems presented in sociological literature, but are systems of exchange in which objects are transferred from one ownership to another physically as well as symbolically. This

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example, taken from the medical domain, exemplifies a system of exchange relations that exists in the social reality, even though not all the conditions obtained in other exchange systems are present. This monograph attempts to present a system of relations in a society that on one hand fosters individualism, and on the other encourages giving for a collective ideal. The nature of these exchange relations derives from perceptions of the quality of society's systems of relations. Israeli society understands that the possibility of giving the body or parts of it is restricted to the communal, social level; the donation cannot be a private gift from one individual to another. The necessary exchange system cannot come into existence unless it is to operate on the social level, for it depends on society's cultural perceptions of everything relating to the body and to the deaths of the donors. Thus the donation of an organ is connected to a wide circle of cultural perceptions regarding exchange relations in general in society. The Israeli National Center for Transplants' efforts to encourage donations should not rely on the gift metaphor, since organ donation is not to be thought of as personal giving. Similarly, stressing the candidates' suffering is unlikely to encourage more donations. Emphasizing the possibility of gaining social recognition and becoming a hero, or perpetuating the memory of the deceased with the donation would be, in my opinion, a more successful strategy to raise the number of organs donated.

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Index

Abramovitch, Henry, 128 abstract body, 84-85, 139; and candidates and recipients, 91, 136; and donors' families, 99, 102-103, 137, 139; and medical team, 91-92, 99 Abuhav, Orit, 54, 59, 63 Abu-Rabia, Aref, 9, 44 Adi Association, 62, 136; card, 80 Almog, Oz, 128 altruism, 23, 46, 49, 60-63, 72, 114, 133 Amir, Delila, 113, 124 Appadurai, Arjun, 50, 52, 54, 59, 137 Aries, Philippe, 108 Arrow, Kenneth, 60 Azaryahu, Maoz, 128 Ball, I. L., 60 Barnes, John, 4 Bar-Tal, D., 60 Barth, Fredrik, 58, 59 Batson, C. D., 60 Batten, Hellen, 12, 23, 49 Baudrillard, Jean, 50, 96, 113, 137

Bauman, Zygmunt, 41, 105, 110, 111, 114, 115, 117, 118, 121, 124, 137, 138, 141, 148 Becker, Ernest, 128 Becker, Howard, 7 Bellagio Task Force, the, 53, 54, 134 Berger, Peter, 106 Berkowitz, Leonard, 60 Berthelot, J. M., 86 biological death, 106-107, 113, 116, 119, 124 Blacking, John, 86 Blau, Peter, 50-51, 58, 63-64 Bloch, Maurice, 54, 63 Blumstein, James, 50 body: as a machine, 91, 92, 94-97, 101, 113, 135-136; multiple types of, 89-91; and sociological and anthropological theories, 84-89 Boe, G. P., 60 Bourdieu, Pierre, HH Bower, Gordon, 60 brain death, 20-21, 47, 73, 78-79, 97, 112 Brawer Ben-David, Orit, 9, 44 candidates for organ transplant, 4-7, 34-42, 67, 138-139, 144;

164

Index

concepts of the body, 9 1 - 9 2 , 119, 136; concepts of death and immortality, 1 1 4 - 1 2 1 Cantarovich, Felix, 49 Chadwick-Jones, John, 6 0 - 6 1 Charmaz, Kathy, 106, 116, 126 Charng, Hong-Wen, 60 Childress, James, 49 Clark, David, 60 Cleveland, Sidney, 61 clinical death, 20, 78 Cohen, Lawrence, 49, 5 3 , 54 commitment, 54, 5 8 - 5 9 , 60, 6 3 , 65, 1 4 4 - 1 4 5 ; to give, 6 6 - 6 7 ; to make a return, 6 6 - 6 7 ; to receive, 6 6 - 6 7 commodity, 50, 5 2 - 5 6 , 57, 6$, 88 concrete body, 9 1 , 143; and donor families, 9 9 - 1 0 0 , 141; and medical team, 92, 9 6 - 9 8 ; and recipients, 92-96 Csordas, Thomas, 87, 89

Douglas, Mary, 83, 89 Dovidio, J. F., 60 Dumont, Louis, 89, 148

Daar, Abdallah, 50, 134 death: determining, 13, 19, 1 1 2 - 1 1 3 ; in Israeli society, 128-129; sociological and anthropological approaches to, 105-110 Denzin, N o r m a n , 7 Deutsch, Francine, 60 doctors, 13; as arbiters of death, 19-22; as brokers of immortality, 112, 114; as healers, 2 7 - 3 4 ; as mediators of organ transplantation, 2 2 - 2 7 ; relations with donor families, 2 3 - 2 4 ; relations with patients, 2 7 - 3 4 ; as scientists, 14-19 donor families, 5-6, 4 4 - 4 7 ; anonymity, 4, 2 3 , 24, 44, 4 5 , 66, 84; concepts of death and immortality, 1 2 1 - 1 2 8 ; consent to donate, 46; perception of the body, 9 9 - 1 0 4 , 137; reasons for refusing to donate, 4 6 - 4 7 ; relations with doctors, 2 3 - 2 4 ; relations with recipients, 1 4 1 - 1 4 2 ; remuneration, 54, 134

Geertz, Clifford, 72 Gell, Alfred, 54 generalized exchange, 144, 145, 148, 149 Geocartography, 44, 47 Gerrand, Nicole, 49, 57, 58, 66, 67 Gerson, E. M., 7 Giddens, Anthony, 8 8 - 8 9 , 101-102, 106, 108, 112 gift, 2 3 - 2 4 , 4 9 - 5 0 , 5 4 - 5 6 , 5 7 - 5 8 , 6 3 - 6 4 , 94, 138, 152 gift exchange, 6 3 - 6 6 , 68 gift of life, 42, 4 3 , 49, 50, 99, 104 Gilaam, Tamir, 128 Goffman, Erving, 87, 88 Gottlieb, Avi, 149 Gouldner, Alvin, 6 1 , 6 4 - 6 5 Greenberg, Martin, 65 Gregory, Christopher, 5 4 - 5 5 , 59, 64

Ekeh, Peter, 5 1 , 5 3 , 6 3 , 6 5 - 6 6 , 68 Elias, Norbert, 89, 106, 108 F^merson, Richard, 58, 63, 71 Farnill, D., 60 Featherstone, Mike, 87 Feiffel, Herman, 128 Feige, Michael, 128 Fellner, C. H., 62 Forgas, Joe, 60 Foucault, Michel, 13, 2 8 , 88 Fox, Renee, 12, 16, 24, 57, 6 1 , 6 6 - 6 7 , 70 Frank, Arthur, 33, 34, 90 Frazer, James, 5 1 , 58 Freidson, FMot, 12, 13 Furman, Mirta, 149

Hansmann, Henry, 49 Haraway, Donna, 84 harvesting, 13, 2 1 , 22, 5 3 , 97, 98, 133 Hazan, Haim, 4, 7, 8 Heath, Anthony, 58, 59, 60

Index heroic death, 128, 150 Hogle, Linda, 22, 25, 50, 56, 57, 70, 122 Hollender, Marc, 27-28 Homans, George, 50, 51, 59 Horowitz, Dan, 148-149 Howard, Judith, 60 Hugh-Jones, Stephen, 50 Humphrey, Caroline, 50 Illich, Ivan, 12, 14 immortality, 110-112 individualization, 106, 107, 148-149 individualizing death, 108 information day on organ transplant, 6, 73-81, 98-99 Inspector, Yoram, 21, 43 interviews, 5-6 Jorgensen, Joseph, 4 Kerber, K., 60 Kleinman, Arthur, 31, 34 Kling, R., 7 Koenig, Barbara, 50, 56 Kopytoff, Igor, 52, 53 Kosa, John, 12 Kristiansen, Connie, 14 Kroker, Arthur, 84 Kroker, Marilouise, 84 Lamberti, Donna, 60 Levi-Strauss, Claude, 59, 63, 68, 144 Liebrand, Wim, 60 Lifton, Robert, 110, 111, 112, 115, 124, 125 Lissak, Moshe, 148-149 Lock, Margaret, 49, 57, 58, 66, 89-90, 112 London, Perry, 60 Macaulay, Jacqueline, 60 Malinowski, Bronislaw, 50, 51, 59, 63, 64, 65 Malkinson, Ruth, 128 Margolis, Howard, 60 Marshall, J., 62

165

Marshall, Patricia, 50, 54, 70, 134 Martin, Douglas, 50 Marx, Emanuel, 54, 59 Matten, M., 22 Mauss, Marcel, 59, 61, 63, 64, 65, 86-87 medical teams, 10-14, 47, 71; concepts of death and immortality, 112-114; perception of the body, 91-92, 96-99 medicalization, 12-13, 19 Mellor, Philip, 108 Meslin, Eric, 50 Mulkay, Michael, 105, 107, 109, 116 Murray, Thomas, 49, 54, 55, 56 Murrell, Rachel, 14 Nissim, R., 60 obligation, 41, 42-43, 58-59, 67, 81, 102, 114, 144 observations, 3 O'Neill, John, 90 organ transplantation coordinators, 3-4, 12, 23, 123-124, 135 organs as national resource, 99, 143-144, 149 organs traffic, 53-54, 132-134 Packard, A., 66 Palgi, Phyllis, 128 Parkin, David, 63, 64 Parry, Jonathan, 53, 62 Parsons, Talcott, 12, 27, 64 patients, 3-5, 12, 34-39, 67, 98-99, 113 Payne, Sheila, 12, 57, 66, 67 perception of death in Israeli society, 128 personal body, 83-85, 88-91, 102-103, 108, 111-112, 146-150 Peters, Thomas, 50 Piliavin, Jane, 60 Pines, Ayala, 60 planting, 98 Ponder, L. D., 60

166

Index

Prior, Lindsay, 108 private death, 106, 108 Prottas, Jeffrey, 12, 2 3 , 49 psychiatric evaluation, 35, 38 public death, 106, 108 Radcliffe-Richards, Janet, 50, 134 Ram, Vidya, 4 3 , 53 recipients, 6, 4 2 - 4 4 ; concepts of death and immortality, 1 1 4 - 1 2 1 ; perception of the body, 9 1 - 9 7 reciprocity, 58, 59, 6 4 - 6 5 , 6 8 , 72; generalized reciprocity, 68, 70, 72, 144 regulations systemized by Harvard University, 20, 21 requesting an organ donation, 44-46 Robbins, Margaret, 14, 47, 62 Rogers, Wendy, 96 Roniger, Luis, 148 Rosman, A., 63 Rothman, David, 5 3 , 134 Rubel, P., 63 Rushton, Philippe, 60, 62 Sahlins, Marshall, 50, 52, 65, 68, 144 Scheper-Huges, Nancy, 5 3 - 5 4 , 89-90 Schwartz, B., 54 Schwartz, Shalom, 60 self, 8 3 , 8 8 - 8 9 , 9 1 , 101-102, 104, 1 0 6 - 1 0 7 , 137, 139, 146, 148 self-identity, 107, 109, 111, 113, 115, 1 2 1 , 122, 124 Shahar, Oriah, 105 Sharp, Lesley, 57, 98, 114, 122 Sheleff, Leon, 60 Shilling, Chris, 14, 84, 86, 87, 88, 9 1 , 96, 105, 108, 109 Simmel, George, 5 0 - 5 1 , 5 3 , 58 Simmons, Roberta, 24, 4 5 , 46, 62 social evaluation, 35, 38 social body, 8 3 - 8 5 , 88, 8 9 - 9 2 , 104, 108, 109, 113, 146, 150; as a bank, 9 1 , 92, 98, 99, 1 4 2 - 1 4 3 ; as

charity box, 9 1 ; and donor families, 103-104, 126-127, 137, 1 4 0 - 1 4 1 , 145; and medical team, 92, 9 7 - 9 8 , 100, 1 3 5 - 1 3 6 , 138; and recipients, 92, 9 8 - 9 9 , 118-119, 144 social worlds, 7 sociological death, 106, 116, 129, 150 Sque, Magi, 12, 57, 66, 67 Strathern, Marilyn, 50, 54 Strauss, Anselm, 7, 2 8 , 29 Sudnow, David, 4, 105, 107, 113, 116 supply and demand, 52, 137 Swazey, Judith, 12, 16, 24, 57, 6 1 , 6 6 - 6 7 , 70 symbolic immortality, 125 Synnott, Anthony, 8 5 - 8 6 , 87, 92 Szasz, Thomas, 2 7 - 2 8 Teasdale, John, 60 Titmuss, Richard, 60, 62, 67, 6 8 , 69, 72 transaction, 22, 24, 34, 44, 5 1 , 54, 56, 59, 60, 66, 99, 112, 137, 142 transference, 73 Turner, Bryan, 86, 87, 88, 90 Unruh, David, 7 value, 5 1 ; determination, 5 2 - 5 3 , 5 5 , 59, 6 4 - 6 5 , 68; of the donated organ, 58, 7 1 - 7 2 , 131, 1 3 5 - 1 3 6 , 137, 138; symbolic, 5 2 - 5 3 , 85, 137, 151 Vernal, C , 66 waiting period, 3 9 - 4 2 Walter, Tony, 108 Weiner, Carolyn, 7 Witztum, Eliezer, 128 Youngner, Stuart, 12, 2 3 , 62 Yuchtman-Yaar, Ephraim, 149 Zerubavel, Eviatar, 148 Zola, Irving, 12

About the Author ORIT BRAWER BEN-DAVID teaches Medical Sociology and Anthropology in the Department of Nursing at Tel-Aviv University, and in the Interdisciplinary Department for Social Sciences at Bar-Ilan University.

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