Medical Ethics | Anthropology
A richly detailed and deeply emotional account of the conflict between modern medicine and traditional society in Pakistan
is a pediatric surgeon, trained in both the United States and Pakistan. She was professor and founding chair of the Department of Surgery and an associate dean of postgraduate education at the Aga Khan University Medical College in Karachi. She received her Ph.D. in religious studies and bioethics at the University of Virginia and is currently professor and chair of the Center of Biomedical Ethics and Culture, Sindh Institute of Urology and Transplantation in Karachi, Pakistan. She is also a visiting professor, Center for Humanism in Medicine, and a fellow of the Institute of Practical Ethics and Public Life at the University of Virginia Bioethics and the Humanities— Eric M. Meslin and Richard B. Miller, editors
“An important contribution to cross-cultural bioethics. Dr. Farhat Moazam’s rich ethnographic study of living kidney donation in Pakistan pays particular attention to who is asked to donate and whose donation is accepted; to the cultural and religious context of professional, familial, and individual decision making; and to gender roles. This clear, well-written book presents compelling narratives within an illuminating framework. Enthusiastically recommended as a model of ethnographic bioethics.” —James F. Childress, The John Allen Hollingsworth Professor of Ethics and Director of the Institute for Practical Ethics and Public Life, University of Virginia
“Dr. Moazam has written a wonderful book, based on her extraordinary first-hand study. . . . A pediatric surgeon, she is also an exceptionally gifted and evocative writer. Her book not only has the attributes of a superb piece of intellectual work, but it has literary artistic merit.” —Renee C. Fox, Annenberg Professor Emerita of the Social Sciences, University of Pennsylvania
ISBN-13: 978-0-253-34782-4 ISBN-10: 0-253-34782-3
INDIANA
University Press Bloomington & Indianapolis
http://iupress.indiana.edu 1-800-842-6796
Bioethics & Organ Transplantation in a Muslim Society Moazam
F a r hat M o a z am
INDIANA
Bioethics
& Organ
Transplantation in a Muslim Society A Study in Culture, Ethnography, and Religion
Farhat Moazam
T
his is an ethnographic study of live, related kidney donation in Pakistan. It is based on participant-observer research conducted by Dr. Moazam at a public hospital in Karachi. The book is both a “thick” description of renal transplant cases and the cultural, ethical, and family conflicts that accompany them, and an object lesson in comparative bioethics. As a physician who has worked in two cultures, Dr. Moazam is able to bring an engaged and informed perspective on the events she records, moving easily between the Pakistani worlds of family and kinship, physicianfamily-patient interactions and Islamic culture, and the world of American bioethics and medicine. Her perspective is not without conflict, and in the conclusion of the book she records the circumstances under which she felt compelled to violate her observer’s stance and intervene on behalf of patients in two especially difficult cases. But this engagement makes the book all the more involving for the reader.
Bioethics and Organ Transplantation in a Muslim Society
Bioethics and the Humanities Eric M. Meslin and Richard B. Miller, editors
Bioethics and Organ Transplantation in a Muslim Society A Study in Culture, Ethnography, and Religion FARH AT MOA Z A M
indi a na uni v ersit y press bloomington a nd indi a napolis
This book is a publication of Indiana University Press 601 North Morton Street Bloomington, IN 47404-3797 USA http://iupress.indiana.edu Telephone orders Fax orders Orders by e-mail
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© 2006 by Farhat Moazam All rights reserved No part of this book may be reproduced or utilized in any form or by any means, electronic or mechanical, including photocopying and recording, or by any information storage and retrieval system, without permission in writing from the publisher. The Association of American University Presses’ Resolution on Permissions constitutes the only exception to this prohibition. The paper used in this publication meets the minimum requirements of American National Standard for Information Sciences—Permanence of Paper for Printed Library Materials, ANSI Z39.48-1984. Manufactured in the United States of America Library of Congress Cataloging-in-Publication Data Moazam, Farhat. Bioethics and organ transplantation in a Muslim society : a study in culture, ethnography, and religion / Farhat Moazam. p. cm. — (Bioethics and the humanities) Includes bibliographical references and index. ISBN 0-253-34782-3 (cloth : alk. paper) 1. Kidneys—Transplantation—Moral and ethical aspects. 2. Kidneys—Transplantation—Psychological aspects. 3. Medical ethics—Pakistan. I. Title. II. Series. RD575.M62 2006 174.2′97461—dc22 2006002414 1 2 3 4 5 11 10 09 08 07 06
I dedicate this book to my parents, Shirin Iqbal and Mohammed Moazam, who set my feet on this path; and to my sister Riffat Moazam Zaman, keeper of my past, cherished companion of my present.
CONTENTS
acknowledgments
ix
Introduction 1. The Stage: Backdrop, Props, and Protagonists 2. Webs of Relationships and Obligations 3. Giving and Receiving Kidneys: Perspectives of Pakistani Patients and Families 4. A Surgeon in the Field 5. Conclusion: Ethics and Pakistan
1 21 73 122 171 215
notes selected bibliography index
227 243 255
ACKNOWLEDGMENTS
There are innumerable people who helped to bring this book into existence; they live in worlds separated by more than merely the span of the Atlantic Ocean. My thanks in Pakistan go to the many patients and their family members who allowed me into their lives and were willing to share their most personal thoughts, memories, and experiences with me. I am also immensely indebted to the many physicians and staff members of the Karachi institute where I did my ¤eldwork for their wholehearted help and for their incredible generosity in adopting me as one of the “family.” A special thanks to the director for opening every door I approached and, above all, for having suf¤cient faith in me to let me undertake in his institution sociological research, which is a rarity in the country. In Karachi, I also appreciate Aamir Jafarey’s efforts (admittedly with equivocal results) to “free up” my time for the ¤nal stages of writing this book. On the eastern shores of the Atlantic, my thanks to Jim Childress, teacher, colleague, and friend, who was there to help but let me chart my own course. My appreciation to Ravindra Khare, Margaret Mohrmann, and Abdulaziz Sachedina for their support at various stages of my research. For Renee Fox, friend, mentor, and intellectual guide, I do not have words adequate enough to express my gratitude. She was with me “in the ¤eld” in spirit and read everything I FedExed to her from Karachi to Philadelphia after I demolished her fax machine by the volume of my notes. My thanks also to Judith Swazey, especially for her help with a dif¤cult passage in the writing of this book. I would like to acknowledge (for mysterious reasons known to a select few) my two nieces—the scintillating Taymiya R. Zaman and the salt of the earth Jawziya F. Zaman. They were indeed with me during the writing of this book, but in ways they will comprehend one day. But above all, it is to my behna, my sister Riffat Moazam Zaman, that I owe the most. She provided me, as always, with un-
x
Acknowledgments
questioning emotional support and rigorous intellectual critique throughout my research and while I was writing this book. She also ensured that I had well-cooked meals and tea available as I worked through the night. She understands.
Bioethics and Organ Transplantation in a Muslim Society
Introduction Nothing at bottom is real except humanity. Auguste Comte (1798–1857), System de politique positive
As a practicing pediatric surgeon in the United States and Pakistan, I was a bona ¤de, card-carrying member of a scienti¤c “orthodoxy” that constructs its legitimacy around formal concepts, dispassionate observations, and rational objectivity. In my surgical clinics I focused on the (relative) certainty of the pathophysiology of disease and the predictability of how human organs respond to noxious agents. As a physician involved in the care of children, I inevitably had close contact with their families and understood how “nonmedical” aspects of an illness could reach beyond the patient and engulf the lives of many. But as a surgeon, my primary training was to win battles against disease. In the operating room my eyes focused on parts of the human body de¤ned by boundaries of green, sterile drapes, and my ears were tuned to the clatter of surgical instruments; meanwhile my hands dissected, resected, and anastomosed tissue I could see, palpate, and sometimes smell. When it came to research, I was involved in systemic inquiry of disease processes and a search for quantitative data that could be analyzed for statistical signi¤cance, hoping that this would lead to tangible results and concrete recommendations. Undertaking ethnographic research as a participant observer in the ¤eld was a shift for me in many ways. I spent three months conducting ¤eldwork in a dialysis and renal transplantation unit (referred to as the Institute henceforth) located in Karachi, Pakistan, in which only genetically related kin are accepted as kidney donors for those in renal failure. For me it was a journey from the universalities
2
Bioethics and Organ Transplantation in a Muslim Society
of scienti¤c thought to the particularities of human experience, from the concreteness of the human body to the nuances of beliefs and values within a culture. It required a shift in my focus from the factuality of medical texts and pathophysiology of disease, to the contextuality of illness and the ways in which people, morally and experientially, make sense of and deal with the life-threatening disease of a family member. This ethnographic research was carried out for my doctorate in religious studies from the University of Virginia, awarded in 2004. The Field and Its Environment
My ¤eldwork was undertaken in Pakistan at a time of globalization of contemporary bioethics and a search for a common morality that can serve as a universal guide for ethical conduct in medical practice and research. Bioethics was born in the United States, and a signi¤cant part of its evolution as a multidisciplinary ¤eld has occurred in this pluralistic society. One of its premises is that universal norms can be derived through the use of secular, rationally grounded ethical principles as opposed to traditional values informed by culture and religious value systems. In the 1970s, Georgetown University philosophers Tom Beauchamp and James Childress published the ¤rst edition of their in®uential text Principles of Biomedical Ethics in which they elaborated on four prima facie ethical principles—autonomy, bene¤cence, nonmale¤cence, and justice. These principles, presented as the basis for a common morality to guide biomedical research and clinical practice worldwide, became integral to the evolution of bioethics in American society. Although these concepts were generated in the United States, they were rapidly exported to other countries in the world and became well known to many in the medical community of Pakistan.1 In fact, these four principles came to form the basis for theoretical instruction in medical ethics to medical students and researchers in many institutions in the country.2 What has not been explored in a systemic fashion is whether, and how, this “intellectual” knowledge “played on the ground” when it came to actual patient-
Introduction
3
physician relationships in Pakistan, a country with strong longstanding cultural norms and religious values and practices. Healthcare professionals at the Institute in which I conducted my study and the patients and families I interviewed were Muslims and Pakistanis. Most of the physicians with whom I interacted closely during my ¤eldwork had completed some or signi¤cant portions of their postgraduate training in centers in the United Kingdom or the United States. They are familiar with the principles of contemporary bioethics and the primacy it accords to autonomy and rights of patients in matters of healthcare decisions. Nevertheless, physicians and the patients and families for whom they care are products of a culture which, despite its complexity, diversity, and dynamism, remains largely traditional—collectivistic in nature and centered on the extended family, even as it makes the transition into modernity. People are born, reared, and spend their lives in a religious, hierarchical society that continues to give primacy to interdependencies and obligations both in private and public domains rather than independence and rights of individuals. Furthermore, duties to others are closely related to socially de¤ned roles within the family, community, and society. This book is my account of the local moral world of the Institute, my observations and analyses of the interactions and relationships between healthcare professionals and patients and their family members and decision-making processes by physicians, donors, recipients, and their families regarding who should donate a kidney to kin and why. This microcosm of what constitutes moral behavior for professionals and laypersons alike, epistemologically and ontologically, is largely “non-Western” in orientation. A sense of right and wrong, of good and bad, is informed by cultural and religious normative standards and experiential realities rather than secular values. It is these standards and realities that inform family motives to donate a kidney to kin, modulate reasons for a reluctance to do so, and color the manner in which physicians react and manipulate family decisions. Muslim beliefs, values, and practices form an integral part of the fabric of life for a vast majority of the Pakistani population. In a
4
Bioethics and Organ Transplantation in a Muslim Society
country of¤cially known as the Islamic Republic of Pakistan, no aspect of life is considered purely secular.3 Having grown up in a Muslim family in Pakistan, and having worked on the faculty of a Pakistani university during the 1980s and 1990s, I was well aware of this fact when I began my ¤eldwork.4 Pakistan is a complex society composed of many ethnic groups (Sindhi, Punjabi, Pathan, and Baloch, to name a few) and socioeconomic strata, as well as different kinds of educational systems (private “English medium” and public “Urdu medium” schools, religious instruction in madaris 5). Nevertheless, Islam provides the basis for many shared values, and a degree of homogeneity, in a country in which a majority of people (95 percent) call themselves Muslims and of whom approximately 80 percent are Sunnis. Babies born into Muslim families, whether in a hovel in a village or in a modern, well-equipped hospital in a city, begin life with the sound of the azan (the call to prayer) recited softly in their ears by an elder of the family. It is considered the responsibility of families, rural and urban alike, to teach children of both genders to read and be able to recite the Qur’an (phonetically, in Arabic), instructed by either a family member or a “Maulvi sahib” appointed from a mosque.6 Many children are still reared within extended families with three generations residing under one roof (or in close proximity) and imbibe a sense of moral behavior in life through frequent references to verses of the Qur’an (considered the word of God) and familiar stories of the Prophet (Hadith) that have been passed down orally through the years. The values that these scriptural sources inculcate during childhood include the centrality of the family in one’s life, responsibilities and obligations to kin based on speci¤c roles related to age and gender, and respect for and deference toward elders (especially parents) and those in authority who are considered to possess the wisdom to know what lies in one’s best interest.7 Above all, the omnipotence of God is emphasized. He is considered the ¤nal arbitrator and controller of all human events both in this world and the next. As a consequence, use of phrases such as inshallah (if Allah wills it), mashallah (praise be to Allah), bismillah (in the name of Allah), and alhamdulillah (thanks be to Allah) is ubiquitous, peppering Paki-
Introduction
5
stani conversations. Many of these values and practices, what I consider to be the “living,” everyday Islam of the people of Pakistan, were in evidence during my interviews and interactions with professionals and laypeople in the transplantation Institute, albeit in varying degrees of intensity and frequency and voiced in different styles. Since the early 1980s there have been signi¤cant debates among Muslim scholars on Muslim ethics as well as many fatawa (religious but non-binding opinions) related to live and cadaveric kidney transplantation. This re®ects a concern among Muslim theologians, ulema (scholars), and fuqaha (jurists) about the moral dilemmas emerging from rapid advances in medical science and biotechnology. In view of the increasing global in®uence of ethical principles grounded in secular traditions, efforts are being made to identify Islamic principles and to formulate “Muslim Ethics” drawing on Scripture and Muslim traditions and conforming to parameters set by Shari’a (Islamic law).8 There have also been extensive discussions among Muslim scholars regarding permissibility of surgical interventions such as tissue and organ donation and transplantation as well as brain death criteria. Meetings held in in®uential, academic Islamic centers located in Saudi Arabia, Egypt, Kuwait, Iraq, and Iran have resulted in fatawa, many of which have been translated into English.9 Without exception, fatawa of ulema from these eminent centers pronounce living as well as cadaveric donation of kidneys as not only permissible but also laudatory according to Islamic Law. These rulings are largely known and referred to in publications by Muslim transplant surgeons in their arguments to encourage organ donations. In contrast, Muslim ulema from South Asia have generally been far more circumspect and conservative in their deliberations and rulings on organ transplantation. My own attempts to ¤nd contemporary records of religious discussions and opinions from respected ulema within the Indian-Pakistan subcontinent uncovered three in®uential publications in Urdu (discussed in detail in chapter 1). Two of these are authored by the respected and well-known in®uential mufti (jurist) Sha¤ (recently deceased), and the third is a record of proceedings of a joint meeting of Asian ulema on organ transplantation held in India in the late 1980s.10
6
Bioethics and Organ Transplantation in a Muslim Society
A review of these texts reveals that some of these ulema (but by no means all) approve of live kidney donation as long as no harm accrues to the donor, and if “expert” physicians believe that such a transplant is the sole means of saving the life of the patient. However, a majority of those participating in these discussions rule that cadaveric organ donation is impermissible in Shari’a. (Mufti Sha¤, in fact, rules that live donation is also impermissible.) A key argument to support this ruling is structured around the premise that according to Muslim belief humans do not “own” their bodies to use as they please; the body is an amanat (trusteeship) from God and therefore must not be desecrated following death. Some of the scholars add that it is therefore incumbent upon scientists to undertake research to perfect xenotransplantation (transplantation of tissues or organs from a different species). What is noteworthy is that South Asian ulema use the same sources (the Qur’an, Hadith) and methodology (analogy from historic juristic rulings) as do their counterparts in the Middle East, but through particular emphasis and interpretation they arrive at a different opinion.11 During my research in the Institute, I was curious about the extent to which this discourse among ulema about organ donation in®uenced the thinking and decision-making processes of healthcare professionals as well as patients and their family members. Some physicians with whom I spoke knew about common juristic principles in Islam such as “necessity makes lawful that which is prohibited,” and “where it is inevitable, the lesser of the two harms should be done.” They mentioned these to me as providing support for kidney donation and transplantation. Others emphasized to me the fatawa from Saudi Arabia and Egypt that live and cadaveric donation were permissible in the Shari’a, but physicians generally seemed unaware of rulings by South Asian ulema opposing human organ donation. None were knowledgeable about discussions on Muslim ethics or the code of ethics for Muslim doctors formulated in Kuwait in 1981.12 Their knowledge of Muslim discourse on bioethics and organ transplantation thus appeared selective and limited to what supported their daily tasks as nephrologists and transplant surgeons.
Introduction
7
All healthcare professionals were uniformly critical of Pakistani “mullahs” (a derogatory term used for men who lead communal prayers in mosques) who were believed to be ignorant about fatawa that supported organ donation. They were seen as the major reason behind opposition in Pakistan to establishing a program for cadaveric organs; they were believed to continuously “mislead” a largely illiterate population on this issue. The scope of my study, together with the dif¤culties I may have had as a female in meeting with male “mullahs,” prevented me from either con¤rming or refuting this impression of the staff of the Institute. The focus of my ethnographic work also did not include gauging, in any systematic fashion, the extent to which academic debates on ethics and fatawa on transplantation inform the beliefs and behavior of Pakistani patients and their families. What was evident through my interviews was that family donors I met in the Institute spontaneously spoke of an obligation and a duty as a Muslim to save the life of kin along with the sawab (reward from God) that this entailed. None seemed aware (when questioned directly) of what Muslim scholars had to say on this issue, nor had any approached a religious scholar, an alim, to obtain his opinion before making the decision to donate or not donate a kidney. Among the more than one hundred donors, recipients, and family members I interviewed in depth, two individuals offered an opinion that Islam did not permit donation of cadaveric kidneys; both based this on a belief that the dead body must be treated with respect. It is possible that in the matter of kidney donation and transplantation some Muslims in Pakistan are knowledgeable about theological and juridical opinions of the ulema and fuqaha and are guided by them; others may be in®uenced by the “mullahs” in mosques. However, my research indicated that in the case of the distressed Pakistani families who were participants in my study, moral authority resided squarely in the person of the revered physician who faced them in the ®esh, rather than an alim sitting in a center of excellence or a leader of prayers in the mosque. What I observed was a disjunction between the world of academic Islam and its scholarly discourse and logic, and a living, experiential Islam of the masses
8
Bioethics and Organ Transplantation in a Muslim Society
who were informed by indigenous beliefs, values, and practices that were internalized over the years and passed on from one generation to the next. Nature and Scope of Study
One reason for choosing to undertake research in this particular area was my desire to address one of the less examined aspects of live organ donation worldwide. Although much has been written about tissue and organ donation, there is a dearth of ethnographic ¤eld research that focuses on the “non-medical” aspects of live donation of kidneys to genetically related kin. Only a handful of studies exist in the United States that deal primarily with live, related kidney donors, their families, and the involved healthcare professionals.13 At the same time, increasing numbers of publications originating from developing countries revolve around medical and scienti¤c aspects of organ transplantation including graft and patient survival rates. Many of these works also note a paucity of available cadaveric organs in their societies and allude to indigenous religious beliefs and value systems as major deterrents to procuring such organs. What is also becoming clear is that despite attempts to increase the supply of cadaveric organs, living donation of solid organs is on the rise in many countries around the world. Living donors, related and unrelated, continue to remain the primary source of organs, especially kidneys, for transplantations undertaken in a majority of developing countries.14 To the best of my knowledge, no ethnographic studies of the nature that I present here have been conducted in countries that have large Muslim populations similar to Pakistan’s, and none ground their comprehension of moral behavior in cultural and religious norms dissimilar to those in Western societies. My research aimed to provide insight into how people live their lives and make decisions in an actual society, and how they de¤ne themselves as individuals and relate to one another. I sought to understand how donors, recipients, their families, and healthcare professionals in one of the busiest transplantation institutions in Pakistan interpreted and utilized indigenous belief and value systems to make sense of dif¤cult, profoundly stressful situations in life.
Introduction
9
Furthermore, my study focused on how shared values inform and mediate interactions, relationships, and decision-making processes of protagonists when they were faced with a situation in which the survival of a family member was possible only through the donation of a kidney by kin. The research was ethnographic in content and style and relied on “thick” descriptions and rich contextual accounts constructed through in-depth interviews and ¤eld observations. The narratives and my analyses presented here are comparative at times as they involve juxtaposing a better-known landscape, that of live kidney transplantation in the United States, with the less familiar topography of how it is “done” in an institution in Pakistan. My assumption was that such attention to the “other-ness” of a culture, its foreignness and “oddities,” would also serve to test and clarify domestic assumptions and values.15 The results of my ¤eldwork in the Institute serve to highlight what James Childress refers to as the “complexity of ethical reality.”16 The medical, the social, and the moral are inextricably bound together; this is especially true when healthcare professionals and patients and their families must negotiate with each other in a struggle to deal with major illness in which survival of one member of a family lies in the hands of another.17 For any meaningful discourse on how people comprehend right and wrong, why something signi¤es moral behavior and the other not, it is important that ethical deliberations include local contexts and a focus on “what is locally at stake.”18 This study is interdisciplinary in its orientation. Based on qualitative, ethnographic research in the ¤eld, it is not addressed to a specialized audience, and neither is it intended as an exposition of a particular ethical, philosophical, or theological theory. In my opinion, Clifford Geertz is correct when he writes that in trying to interpret a culture, “only short ®ights of ratiocination tend to be effective”; longer ones tend to drift off into what he describes as “logical dreams, academic bemusements with formal symmetry.”19 In the interpretation and analyses of interviews in the chapters that follow, I utilize relevant literature from several disciplines. My work crisscrosses borders of traditional and modern medicine, Mus-
10
Bioethics and Organ Transplantation in a Muslim Society
lim beliefs and values and their religious and cultural sources, secular bioethics and its rational basis, and studies in anthropology and medical sociology that focus on the cultural and psychological dimensions of medical illness. It is a study of the contextualized conditions of human experience in a transplantation institution in Pakistan and an exploration of the diverse factors—religious, cultural, psychological, social, economic, and medical—that informed patients, families, and healthcare professionals in decision-making processes. The corpus of this book is largely created from words I heard from donors, recipients, and their families, and healthcare professionals who took care of them during dialysis and transplantation. This is augmented by my ¤eld notes on the behavior I observed as these people interacted with each other. This study of the moral microworld of the Institute opens a window into complex kinship systems of Pakistan even as it offers a glimpse at the particularities of patientfamily-physician relationships in the country. To the best of my knowledge, this is an area that has not been studied in this way before. That said, this book is nevertheless a personal rendering from my particular point of view; it is a story I weave about the stories the participants told to each other and to me about themselves and their families, about what was important or trivial to them, good or bad, right or wrong, as they went about living their lives. The Methodology
I conducted my ¤eldwork in early 2002 over a period of three months in the Institute. I ¤rst discussed the research project with the director of the Institute, a transplant surgeon, during two visits to Karachi in 2001. He believed that as such research had never been done in Pakistan, it would be of great value to his Institute and the country. He was very keen that I undertake the research in his institution and promised full personal and institutional support. Undoubtedly this decision was in®uenced by his respect for me as a professional colleague; we had known each other from earlier years
Introduction
11
when I was chairperson of surgery and associate dean of postgraduate education in another university in Karachi. On the day I arrived in the Institute to begin my ¤eldwork I met with senior faculty (all clinicians) to inform them of the objectives and methodology of my research and to explain that this would include interviewing some of them as well as observing faculty and staff interactions with patients and families in the clinics. My explanations were met with comments such as “Madam, we welcome you as our senior colleague” (referring to my previous positions as professor and associate dean) and “you do not have to explain anything to us; please consider this as your hospital. We are here to help you.” Their response, not a surprise to me, was in keeping with cultural norms of respect toward senior colleagues, especially “professors.” Asking them for any form of written permission to conduct interviews with physicians and staff would have not only been construed as “culturally inappropriate” but even embarrassing for all parties concerned. Accordingly, I employed a “verbal request” for these interviews, recorded and transcribed our conversations personally, provided each interviewee with a draft, and modi¤ed or deleted areas they requested. Before ¤nalizing the chapter composed of these interviews, relevant portions were e-mailed to each interviewee (I was back in the United States by then); I obtained ¤nal approval from each in a subsequent visit to Karachi. Names of all interviewees were replaced by ¤ctitious ones using ¤rst names alone. These focused, in-depth interviews were conducted with selected “senior” faculty and staff, people I perceived as the primary formulators of the distinctive ethical ethos of the Institute. I used these conversations to probe aspects of personal history and experiences that had contributed to the values they had carried and instilled in the institution. Focused interviews also allowed me to cross-check and con¤rm some of my ¤eld observations. Over time, some of the staff, including the director of the Institute, a transplant surgeon himself, took to dropping by my of¤ce to chat, an activity I enjoyed and also encouraged to foster rapport. During these informal conversations, I was clearly viewed as a physician, a medical colleague rather than a participant observer, somebody with whom an
12
Bioethics and Organ Transplantation in a Muslim Society
interesting case could be discussed or advice sought for academic progress. My interaction with healthcare professionals also occurred in informal settings. In every clinic around noon each day, the staff and I were informed with a broad smile that there was “a very serious patient in the next room,” and that it was time to attend to him. This was the signal for everybody to move into a side room for a short break to indulge in the ubiquitous Pakistani tea-drinking ritual, supplemented by spicy samosas (deep fried potato fritters), fruit, and biscuits that were paid for in turn by the faculty. These tea breaks provided a superb opportunity for me to speak informally with residents, younger faculty, and paramedical staff to gauge their views about the Institute and opinions about senior colleagues and to observe the ways in which they related to each other. These occasions, during which patients and families were discussed freely, were also invaluable in providing insight into how the staff perceived their relationships and role toward those they looked after daily. I saw their compassion, empathy, and deep sense of professional obligation toward their patients. But I also sensed their anger and frustration, openly verbalized, at family members who appeared reluctant to donate a kidney, and noted the praise and affection they showered on those who volunteered to be donors. The Institute is the largest, busiest center within the public (government) and private healthcare sectors in Pakistan and undertakes well over a hundred living kidney transplants every year. The staff of this public institution accepted kidneys strictly from genetically related donors and, unique for the country (and perhaps the world), provided all treatment, including dialysis, surgery, and immunosuppressive medications, free of cost to those admitted to its programs. This was irrespective of the social and economic status of those who arrived at the door of the Institute. All staff members were considered “full-time” and were prohibited from private practice (also unique for a government healthcare institution in Pakistan). They worked on a ¤xed salary irrespective of the number of patients they treated. I collected my data on patients and families in the outpatient areas of the institution by immersing myself in post-transplant clinics four
Introduction
13
days a week and pre-transplant and donor clinics once a week. I spent time in the clinics observing the interactions of the various protagonists with each other and also conducting in-depth interviews with donors, recipients, and their families, on more occasions than one when necessary. Once clinics were over, generally by late afternoon, I worked on my notes in an of¤ce generously provided to me on the premises before leaving for home. There was no Institutional Review Board (IRB) or its equivalent in the Institute. And similar to the practice at other hospitals in the country, an informed consent in the Institute was obtained in writing only from patients and families for surgical or invasive procedures such as donor nephrectomy, transplantation, kidney biopsies, and construction of arterio-venous ¤stulae for dialysis. I obtained verbal consents from all donors, recipients, and the family members I interviewed employing Urdu, the national language; this was frequently the only, or preferred, language for a majority of those with whom I spoke. My consent process included introducing myself, providing my background, explaining the nature of what I wished to do and why, the need for such a study in Pakistan, and how it might help to improve patient management. After providing this information I would inquire if they were willing to participate in the study and share with me their experiences connected to donating or receiving a kidney. I then asked if they had any questions for me; some were curious and asked a few general questions (frequently of a medical nature), but the majority did not. None I approached refused to speak with me; on the contrary, it was fairly common for them to thank me profusely, a “senior doctor,” for having taken so much time speaking with them. My interviews with individual patients and family members were open-ended and conducted in the privacy of a separate room to safeguard con¤dentiality. Similar to physicians and staff, their names were also replaced in the text with ¤rst names only and those most commonly used in Pakistan. My interviews with donors and recipients were conducted almost entirely in Urdu; with physicians and other staff the interchanges in Urdu tended to be sprinkled with English on occasions. I translated my notes into English at the end of the same day to ensure that I
14
Bioethics and Organ Transplantation in a Muslim Society
stayed as faithful as possible to what I had heard and scribbled in the clinic. (To avoid intimidating patients I did not employ a tape recorder when speaking with them.) My rather rusty Urdu soon acquired a respectable shine to it; nevertheless I found the translation frequently complex and always thought provoking. This was related not so much to my search for appropriate words in English, but to my attempts to capture the far more nebulous essence of what a particular Urdu word or term had signi¤ed in the interview; the “meaning” behind the spoken word was sometimes not easy to capture in English. In addition to Urdu-English (and occasionally ArabicEnglish20) dictionaries, I turned to friends and family members who are considered Urdu-dans (a colloquial term used for those seen as pro¤cient, ®uent in the language) and who, unlike me, had not lived outside the country for many years. In the Institute, I was provided free access to patient medical records as well all patient data which the staff had accumulated over the years. This included copies of texts and slides of presentations made by the faculty over the last two decades. I was also allowed to review the extremely useful handwritten “register” of the social worker, Ms. Azra, my main informant in many ways, in which she had scrupulously inscribed basic information about every recipient and her or his donor since the conception of the program in 1985. Ms. Azra was also a living repository of intimate details of families with whom she dealt and had a phenomenal memory of events surrounding every transplant that had taken place in the Institute. I was welcomed to, and attended, the weekly medical conferences in which cases seen in the clinics were presented and discussed. Other sources that I found valuable for my research were the professional publications of the faculty. In a country that has yet to initiate and maintain a central or national registry for the many prevalent diseases, including end-stage renal disease, this proved to be an extremely useful supplementary source of information. In order to assess the standing of the Institute in the eyes of the public, I reviewed editorials and accounts in the lay press (an astonishingly large number) in Urdu and English pertaining to the staff of the Institute and their activities. I gained additional help from general news items in local newspapers about renal disease and transplanta-
Introduction
15
tion in Pakistan and the status of public and private healthcare organizations available to deal with these challenges. Organization of Chapters
The book is organized into ¤ve chapters, each dealing with what I came to identify as broad themes. Nevertheless, there is some overlap among the themes within the chapters; the nature of a study in which patients, families, and healthcare professionals are deeply connected makes this unavoidable. The ¤rst part of chapter 1 includes an account of my initial day in the Institute. During this ¤rst contact, I was slotted into a position considered the most suitable by the director and staff within the hierarchy of their institution; I was henceforth to be addressed respectfully as “Madam” in recognition of my status as a “senior,” experienced physician even though my professed role was now that of a participant observer. The chapter next presents an overview of the status of end-stage kidney disease and renal transplantation in Pakistan and the level of services and resources available to address them. Without this background it is not possible to understand the nature of patient-familyphysician relationships, the functioning of the Institute, and the underpinnings of the moral ethos that suffuses the institution. The chapter also touches on relevant aspects of the contemporary debates of Muslim scholars regarding brain death criteria and organ transplantation, and speculates on some of the reasons that may be responsible for public resistance to cadaveric kidney donation in Pakistan. The second half of chapter 1 introduces ¤ve healthcare professionals, all Pakistanis and Muslims, whom I came to recognize as exemplars of the spirit that fashioned and guides a collective sense of professional obligations toward patients in end-stage renal failure. These ¤ve individuals are the backbone of the local moral world of the Institute. My in-depth interviews with them explore aspects of their personal lives that inform their sense of right and wrong in life, and shape in profound ways their relationships and daily interactions with patients and their families. As the major actors in this living
16
Bioethics and Organ Transplantation in a Muslim Society
drama—the movers and the shakers, so to speak—these people are never really off the stage in the subsequent chapters. Chapter 2 begins with a brief overview of the evolution of secular bioethics as a discipline, its central notion of the rational individual as a moral agent and the basic unit of society, and its quest for a common morality to guide the conduct of healthcare professionals in clinical practice and research. This serves as a backdrop against which the particularized, indigenously fashioned ethical world of the Institute stands out in sharp relief. The chapter focuses on the perspectives of the medical staff, the Institute as seen through their eyes. I explore how they transplant the paradigm of a Pakistani family, with its hierarchy, speci¤c roles, and related duties, into the Institute. In many ways it is a model of the extended family that de¤nes both their relationships with each other and their interactions with those for whom they care each day in their clinics. I analyze how despite an intellectual familiarity with bioethics and its principles, healthcare professionals at the Institute fashion a distinctive, and shared, moral world that is deeply suffused by indigenous cultural and religious norms of Pakistani culture. It is a world in which primacy is given to relationships and interdependencies, and a sense of relational obligations. A strong belief in responsibilities of the powerful (in this case, the physicians) to the vulnerable translates into a professional code in which a ferocious benevolence directed toward the patient remains central.21 This works in tandem with a sense of social justice in which the duty of healthcare professionals toward patients, perceived as victims, is paramount. In this view, the issue of individual rights of an autonomous person qua person, characteristic of a “blindfolded” justice, is peripheralized in encounters with patients and their family members. The last part of chapter 2 describes the practice by staff of what I came to see as a “Pakistani” version of gatekeeping grounded in concern for a second set of “victims,” the many women, single and married, perceived as being helpless in a patriarchal, androcentric society. Using staff interviews and my observations in the clinic, I illustrate the mechanisms employed by healthcare professionals to protect females suspected of having been brought in as “willing” kid-
Introduction
17
ney donors by their families. I explore the manner in which indigenous cultural and religious norms that legitimize the healer’s authority and status are brought into play for this purpose. The third chapter shifts to the tragic world of donors, recipients, and families, seen through their eyes and captured in their words. For me, these accounts form the heart of this book. Their world is best captured by the life of God-fearing Job, a victim of fate, brought to his knees by misfortunes that strike him and his family incomprehensibly, and over which they have no control. Trapped in a situation which he can neither understand nor ¤nd an explanation for, Job is desperate, ringed by terrors on all sides; all hope driven out of his life. He laments that if the grief and suffering engul¤ng him from all sides were placed on a scale, they would “outweigh the sands of the ocean.”22 Donor and recipient narratives reveal the far-reaching and tragic repercussions on profoundly interdependent, inextricably enmeshed lives within extended families when one member falls victim to a mortal illness. Like Job, they are victims of a cascading sequence of events that threatens to destroy the family and over which they have little control. Their voices tell of how the illness of one connected with the necessity for another to undergo donor nephrectomy can jeopardize not only the emotional, psychological, and economical well-being of the entire family but also their survival. Their stories highlight what physician-anthropologist Arthur Kleinman describes as “the choke and sting of symptoms, their material impact on persons and relationships, their metaphorical extension outward into work and family and inward into the imaginative interstices of the self.”23 Against the backdrop of experience with live kidney donation in the United States, I analyze the motives behind the eagerness in some families to donate a kidney to kin and the skein of complex factors underlying the reluctance in others to do so. Language and metaphors used by donors are presented as well as the ways in which these contrast with the American experience. The interviews with families that form the ®esh of this chapter throw light on the strength and warmth of interwoven lives; they also illuminate the Janus face of traditional hierarchical families in which economically
18
Bioethics and Organ Transplantation in a Muslim Society
dependent women remain the most vulnerable, and exploited, in family considerations of the best interest of the larger unit. I include discussions about how patients and family members interact and relate with healthcare professionals who are expected to assume a directive role and the manner in which families negotiate their differences, within parameters of cultural norms, with those in authority. The chapter ends with a review of the discordance I detected in the Institute between the scienti¤c “knowledge” of healthcare professionals and the lay “beliefs” of patients and families. I also explored the “alternative” modes of therapy employed by many families without knowledge of healthcare professionals that led to either long delays in decisions to proceed with transplantation or, in some cases, not returning to the Institute at all. The fourth chapter is re®exive in nature. It is a personal account, a turning from observations and analyses of others to a measure of introspection and self-analysis. My aim here is to examine the biases and baggage, both personal and professional, accumulated over my life, which traveled with me into the ¤eld and the ways in which these feelings and events molded the nature of my research, in®uenced the areas I chose to focus upon or ignore, and inevitably colored my interactions with the participants in the study. I began my study in the Institute with many unique advantages. I was born in Pakistan and spent my childhood and early adulthood in the country. I was reasonably well conversant in Urdu, the language of those I returned to study, familiar with its cultural nuances, and understood and shared many of the cultural and religious values of the patients and their families. Although my postgraduate training in general and pediatric surgery had occurred in the United States, followed by several years on the faculty of an American university, I had also served as chair of surgery and associate dean of postgraduate education during the 1990s in one of the leading private universities in Pakistan. I therefore began my study with the advantage of being well known to the medical community in Pakistan, just as I was knowledgeable about the country and its physicians and familiar with the national healthcare systems. Chapter 4 explores how, paradoxically, these advantages of my background also served to enmesh me in moral dilemmas unique to
Introduction
19
me in my role as a participant observer. I conducted my research juggling several hats in addition to that of a participant observer. I was a physician, a medical educator, a Muslim, a woman with a Western education, and an individual with strong convictions regarding gender relationships. I discuss how one of the sources of my deepest moral unease came to be my strong identity, both in my eyes and in those of people with whom I interacted, as an experienced physician and medical educator in a country with a dearth of both. In the Institute I found myself back in a Pakistan I had left behind many years ago. In its clinics I saw a cross-section of families very different from the relatively af®uent patients I had treated during my years on the faculty of the private university in Karachi. A vast majority of patients at the Institute were either dirt-poor or belonged to the lower socioeconomic sector and were dusty from days of travel by bus from far-®ung corners of the country to reach the Institute. Unable to afford hotel accommodation, many camped out on the grounds of the hospital with their meager possessions piled around them as they waited for family members to undergo dialysis or transplantation. I was submerged in a sea of misery composed of terribly ill patients and their destitute, distressed families, with an overstretched, idealistic staff struggling to make a difference and stem the tide of human suffering. Even though I had the skills and training to give a hand in this Herculean effort, my study required that I observe and take notes, careful not to “contaminate” my study by changing the “natural” course of events. Chapter 4 analyzes my growing sense of moral unease and ambivalence and my struggle in some instances to ascertain the correct, ethical course of action on my part in treading between my identity as a physician and my research as a participant observer. The narrative includes an account of my progressive involvement in the personal lives and medical course of two patients, a little girl and a young woman with end-stage renal failure, who had been waiting for several weeks for family members to offer to donate a kidney. In both cases I believe that my Weltanschauung, the biases and convictions I held as a physician, a privileged woman and a Muslim, were major factors in®uencing me to intervene. These two cases
20
Bioethics and Organ Transplantation in a Muslim Society
also signaled to me that it was no longer morally possible for me to stand by taking notes, that it was time for me to take my leave from the ¤eld. Chapter 5, a brief conclusion, summarizes what I believe to be key issues, previously unexplored in any systematic fashion, related to live kidney donation to genetically related family members in a traditional, family-centered Muslim society. I focus on how shared beliefs and value systems and socioeconomic realities inform and frame ethical dilemmas with which healthcare professionals must grapple daily. These are speci¤c to indigenous norms and contexts within which interactions take place between staff and patients and their kin; it is a “local” moral universe that differs in signi¤cant ways in its ethical concerns and modes of resolution from those encountered in af®uent modern societies. The chapter includes re®ections on possible avenues for future research based on some of the ¤ndings highlighted during my ¤eldwork in the Institute. It concludes with an overview of the current status of bioethics in Pakistan, and how its focus, direction, and growth are being in®uenced by particularities of religious beliefs, local value systems, and existing realities in the country.
1 The Stage: Backdrop, Props, and Protagonists We are the children of our landscape; it dictates behavior and even thought in the measure to which we are responsive to it. Lawrence George Durrell, Justine
In this chapter I sketch relevant aspects of the landscape that formed the background for my ethnographic ¤eld research in the Institute on live, related, renal transplantation in 2002. This includes features of the country called the Islamic Republic of Pakistan, the city of Karachi, and the Institute at which the dialysis and transplantations took place. I begin with an account of my ¤rst day in the Institute that provides a microcosm of the world in which I was to immerse myself during my study, and a glimpse at how I was perceived and slotted within the existing system. This is followed by an overview of the status of kidney disease and chronic renal failure in Pakistan, and the services and resources available in the heal1thcare sector and the Institute to address such disease. This information, much of it factual and concrete, is necessary to make sense of this world and its inhabitants: the donors and recipients and their families, and the physicians and staff who interact with them. The second half of this chapter introduces ¤ve key healthcare professionals in the Institute who have played a central role in its evolution from an eight-bed urology ward into the largest dialysis and transplant institution in the country. This is merely an introductory handshake; these professionals are key ¤gures on stage in the story that unfolds in subsequent chapters. My aim here is to shed light on aspects of their personal and professional backgrounds, their
22
Bioethics and Organ Transplantation in a Muslim Society
life experiences and beliefs and values, and their particularized way of perceiving, comprehending, and acting on events around a lifethreatening disease. I believe that all these factors inform a professional moral code that guides both their interactions among themselves and their relationships with patients and their families. My analyses suggest that indigenously shaped cultural and religious values and beliefs and an implicit and explicit focus on professional and familial duties and obligations de¤ne a shared moral ethos and deeply in®uence decision-making processes within the Institute. First Contact
Karachi, the city of my childhood and adolescence in Pakistan, is full of contrasts and contradictions which appear to be starker every time I return. It is a city of palatial houses and tin-roofed shanties, of people who spend summer vacations in London or New York and others who eke out an existence laboring in ¤elds, of youth who celebrate birthday parties in lavish hotels and bare-footed children who approach as you step out of well-stocked grocery stores to inform you plaintively that they have not eaten all day, of shiny SUVs and Mercedes Benzes with laughing families driving down broad, tree-lined avenues in the suburbs and donkey carts piled high with cords of wood driven by lean men with furrowed brows along the dusty lanes of the congested inner city. Early in the spring of 2002, I drove the four miles from my suburban residence in Karachi to the urology and transplantation Institute in the heart of the city, moving from one world into the other in a matter of minutes. I was to meet Dr. Ahmed, professor of surgery and director of the Institute in which I was to conduct my research. The Institute is part of one of the oldest and largest public medical colleges (around ¤ve hundred female and male physicians graduate from it each year), my own alma mater many years ago, and its associated teaching hospital in the country. Medical and surgical services of the teaching hospital, outpatient clinics and inpatient wards, are housed in numerous buildings, some over a hundred years old and showing their age, that sprawl haphazardly over a large area in the center of Karachi.
The Stage
23
The buildings that constitute the hospital are bounded by busy streets on all sides. A couple of streets cut through the campus and have to be crossed to get from one building of the hospital to another. These are chaotic, noisy roads full of pedestrians weaving among vehicles that are as likely to employ humans or animals as gas or diesel for sources of energy. Services provided by the Institute (nephrology, general urology, dialysis, and renal transplantation) are dispersed through three separate buildings, two of them ancient and worn out and the third a brand new building built in the last decade and situated two streets away. I was to meet Dr. Ahmed in the seminar room of one of the old buildings of the Institute that housed on its second ®oor the operating rooms, intensive care areas, surgical wards, and the unit for peritoneal dialysis. Access to this ®oor was by way of a rickety, manned elevator that was summoned by means of a call button near the door. I entered the elevator together with a gaunt, sallow patient on a stretcher accompanied by his family members. A small fan mounted on the back wall whirred away, moving the air in the small, box-like elevator. Getting off on the second ®oor, I walked through a long, spotlessly clean corridor past the operating rooms and turned into another hallway with large general wards along both sides. Every bed was occupied, and some of the rooms had stretchers along the walls to accommodate the over®ow of patients. Clumps of anxious family members were visible in the wards and the corridors. At the end of this corridor was a windowless seminar room with a rectangular table in the center and chairs arranged around it. I had been told by Dr. Ahmed that the weekly pre-transplant meetings to review information on selected donors took place here on that day, with a suggestion that I sit through one of them. Having arrived a little early for the meeting and ¤nding the room empty, I sat down to wait in a chair against the wall. A few minutes later several white-coated male physicians (including two nephrologists, one senior urologist/transplant surgeon, one immunologist, and two residents, as I was to learn later) walked in. After a few glances and smiles directed at me, the meeting began. In a process familiar to teaching hospitals anywhere in the world, the residents
24
Bioethics and Organ Transplantation in a Muslim Society
presented the “medical” facts of two prospective donors—name, age, medical history, results of investigations done—followed by projection of their IVPs (intravenous pyelograms), renal angiograms, and renal scans on the viewing screen. One prospective donor was a father and the other a mother, and the transplants were to take place within the next two weeks. A brief discussion followed among the faculty, and a decision was made as to which of the two kidneys from each donor was the most suitable for a nephrectomy. The presentation was made entirely in English, but the subsequent discussion took place in a mixture of English and Urdu (the native language of Pakistan). The atmosphere was casual and informal, and the discussion of the cases occurred between the faculty, with the residents listening intently but not asking questions or offering any suggestions, a system familiar to me from my earlier years of work in Pakistan. Nobody seemed to be running the meeting although deference was evident toward the two senior faculty members who were addressed as “[¤rst name] sahib.”1 There was some good-natured bantering between the urologist and the senior nephrologist, Dr. Badar. “Now Badar sahib, I know you will make problems for us surgeons after we do the transplant.” Everybody laughed. When the discussion ended, the surgeon looked at me and said, “Madam, please move up to the table.” Two of the physicians quickly vacated their chairs for me. He then added respectfully, “I saw you when I came in, but you were reading a book, so I did not want to disturb you.” I suggested that I introduce myself and tell them why I was there, but he interrupted me and said politely, “What is the need for that? You may not know us, but we all know you. [This was a reference to my time as chair of surgery and then associate dean of postgraduate education in another university in Karachi some years ago.] Please consider this as your own department.” Introductions were made at my insistence, and I explained the nature of the study I hoped to conduct over the next several weeks. Tea and biscuits, an obligatory ritual at all meetings in Pakistan, were brought in, and I was asked a few questions by the physicians,
The Stage
25
who seemed genuinely curious about why a doctor, especially a surgeon, would undertake the kind of research I intended to do. In the conversation that followed, now primarily in Urdu, I was told that dialysis and renal transplants were done without charging patients anything and that kidneys were accepted only from blood relatives. The physicians informed me that they were aware of institutions in the country in which kidneys were bought from unrelated donors; they considered this to be an unethical practice as it exploited the poverty of donors. They tried to make sure that in their Institute no money changed hands between recipient and donor. Dr. Badar interjected that unfortunately an exchange of money did take place occasionally but that they found out about it after the transplant had taken place. He added, “I know of a case in which the inheritance share of a brother was increased following his donation.” I asked about the issue of informed consent from donors. He smiled and said that yes, a written consent was taken in every case, but that in some cases it is “similar to the Pakistani custom of marriage in our culture. It is like the way in which consent is taken from the girl [the bride].” There was a burst of laughter around the table. What Dr. Badar was referring to was the fact that most marriages in Pakistan are still arranged by parents and family members, and the bride is expected to give her consent by nodding her head at the time of the ceremony. And whatever the extent of their involvement, or lack thereof, in the actual decision of who is to be their spouse, it is the bride, and groom, who sign the document that makes the marriage legal. Around 9:00 a.m., Dr. Ahmed, a man in his sixties wearing a white coat and sporting an equally white shock of hair, hurried into the room, causing a ®urry of hastily pushed back chairs and greetings of “Assalam alaikum, Sir,” by juniors and seniors alike. He greeted me, asked brie®y about what had transpired in the meeting, and then said, “Let’s go.” As we walked back through the corridors toward the elevator, Dr. Ahmed was greeted, saluted, and “salaamed” with respect bordering on reverence by everyone we passed. He was “Sir” to one and all; people stood up when he walked by and rushed to open doors for him.2 He was stopped by family members
26
Bioethics and Organ Transplantation in a Muslim Society
with queries about patients, which he answered, and on one occasion signed an X-ray request slip for a man and directed him to the radiology department. As we reached the corridor running outside the operating rooms, one of the senior surgeons emerged from the door and stopped Dr. Ahmed to ask his advice. Apparently a donor who was being wheeled into the OR for a nephrectomy had suddenly informed the operating team that she had allergies. The surgeon mentioned that the patient had had a thorough work-up and that perhaps she was just afraid of undergoing the surgery. There was a brief discussion, and Dr. Ahmed said, “Let her go, let her go.” As we walked away, he told me that if there was any suspicion raised even on the day of surgery that the donor was reluctant or afraid to donate, he or she was not operated upon. A van was waiting for us in the courtyard beyond the elevator. The driver saluted Sir and opened the doors for us; we were driven off to the new building of the Institute two short blocks away. Just before we turned onto the main road, we passed another old building used by the Institute, with a large sign—OPD 14 (the outpatient department)—across its entrance door. The open space outside OPD 14 was teeming with patients, each accompanied by several family members, some standing and others squatting on the ground, waiting to be called into the clinic. I learned that the pre-transplant clinic was held in this building every Wednesday for patients judged to be transplant candidates and members of their families. The latter were interviewed as potential donors by physicians, and decisions were made as to who should give a kidney. In the days that followed, it was this clinic above all others that served for me as a window into the world of the Institute’s healthcare professionals, patients and their families, and the kinship systems, concrete and metaphorical, that remained central in all interactions. This clinic would play a crucial part in my understanding of how indigenous Pakistani values and beliefs—together with local healthcare norms and socioeconomic realities, and not merely universally accepted medical facts and scienti¤c knowledge—largely dictate decisions about who should, or should not, donate a kidney. The van turned onto a slightly less busy street, and it was a surreal
The Stage
27
experience to see the new building of the Institute come into view. There stood a modern, imposing, ¤ve-story structure, deep reddish brown in color, behind high walls and a mammoth iron gate that was pushed open by two men who saluted as we drove up. The building, a harbinger of things to come, was ®anked by ancient neighbors on both sides—buildings with peeling paint, some residential and others commercial—presenting a con®uence of the old and the new. Across from the building were numerous cars, parked and double-parked, with a cow tethered in an empty spot between them. Dr. Ahmed told me that the new building (at a total cost of approximately $3.5 million) was built from the donations of a single Pakistani family, grateful for the dialysis provided (free) by the Institute to the paterfamilias a few years ago. I could see the name of the family emblazoned in prominent letters on one of the outside walls. The building housed all research activities (including a stateof-the-art immunology laboratory), a substantial library, the busy hemodialysis unit, post-transplant clinics (conducted ¤ve days a week), an imposing auditorium, lecture halls, and some of¤ces. Dr. Ahmed said that he was planning to move the entire dialysis and transplant program, including the operating rooms, into this building eventually. We walked brie®y into the post-transplant clinic underway on the ¤rst ®oor, and I heard a whisper travel around the room, “Sir is here.” We went through the now familiar salaams. I brie®y greeted the social worker, Ms. Azra, a woman whom I had met in the previous year, and who would play a key role in my study in the weeks ahead. Dr. Ahmed and I then headed for the ¤fth ®oor, this time in a spacious, unmanned, and fully computerized elevator. He led me to a room adjacent to the library, opened the door, and announced, “This is your of¤ce. It is in a nice quiet area so you can work.” He then added with a laugh, “I cleaned and scrubbed it myself to get it ready for you.” He showed me an adjoining room with an electric kettle, coffee, tea bags, and coffee mugs on a table. Another door led to a large conference room. “You can interview patients here.” Yet another adjoining room had a small fold-out sofa bed. He teased, “You can rest here if you get tired.”
28
Bioethics and Organ Transplantation in a Muslim Society
He then walked back to the door and called loudly, “Son, come here.” A young man hurried up and said, “Salaam, Sir.” Dr. Ahmed told him, “This is Madam. She will be working here. You must sit outside this door everyday, and when she arrives in the morning you must make tea for her. Understand?” “Yes, Sir,” was the response. In the subsequent days, during the many hours I spent in my splendid of¤ce cum suite, I never saw the young man sitting outside my door (nor did I summon him, as I prefer to make my own tea). But my interactions in the ¤rst few hours within the Institute had ¤rmly established my status within the system and would set the tone for future interactions. I had been slotted into the existing hierarchy based on my reputation as a “senior” surgeon with experience working in Pakistan and the United States and reinforced by the regard in which Sir was perceived to hold me. I was henceforth to be “Madam” to one and all, faculty, staff, and residents, and later the patients and families I met. It was with considerable dif¤culty that I did eventually succeed in getting a few of the senior faculty, with whom I had the most dealings, to address me as Dr. Moazam (or their preferred “doctor sahib”). I was always addressed with the formal Urdu word aap (the equivalent of vous in French) rather than the more familiar tum (like the French tu). It was clear that I was to be respected as an older, senior individual within a hierarchical system (familiar to me, having grown up and then worked in Pakistan), and treated with the deference accorded to physicians in the country. It was only Dr. Ahmed (whom I had known for several years) and I who addressed each other by our ¤rst names without the pre¤x of doctor or the suf¤x of sahib. Dialysis and Renal Transplantation in Pakistan
Pakistan, with a population of 148 million people in 2000, about 95 percent of whom are Muslims (with approximately 20 percent Shi’i and the rest Sunni), is among the ten most populous countries in the world. Although it contains mega cities such as Karachi (around 12 million population) and Lahore, 65 percent of the coun-
The Stage
29
try is still rural. The literacy rate is low (overall 30 percent, and lower among women) and the per capita income is $490 per year. The government spends around 0.8 percent of its GDP on public health services.3 There is no central registry for renal diseases in the country, but the prevalence is considered to be very high. In a retrospective study (unpublished data) carried out in the Institute in which I conducted my research, a total of 191,000 patients were seen with various urological and nephrological problems just in the year 2000. The incidence of those who proceed to develop end-stage renal disease (ESRD) in Pakistan is estimated to lie in the neighborhood of 100 per million of the population. The leading causes of ESRD include chronic glomerulonephritis, hypertension, diabetes mellitus, and renal calculus disease, together with the fact that many of these conditions go undetected and untreated for several years. Due to limited resources in the country, only 25 percent of those diagnosed with ESRD are estimated to have access to hemodialysis or renal transplantation.4 The problem is one of gargantuan proportions. Chronic hemodialysis became available in the country in the early 1970s. Although it is currently estimated that there are ¤fty-one public and private clinics and hospitals offering dialysis, overall approximately only 15,000 patients are being dialyzed every year. Much of this is related to the absence of third-party payers and health insurance schemes, public or private, the expense of the procedure ($5,000 to $7,000 per year per patient) in the private sector, and widespread public ignorance about renal and other diseases. Mortality rates among patients on hemodialysis remain high, in the range of 25 to 30 percent per year, due to a combination of factors, including malnutrition, high rates of infections, an almost 40 percent prevalence of hepatitis C infection, and a paucity of trained physicians and personnel to handle critically ill patients who often present in late stages of the illness. In 1999, the ratio of nephrologists to the population in Pakistan was reported as being one nephrologist for every two million people. Live renal transplantation in Pakistan was initiated in the mid1980s. By the year 2002, around a dozen or so hospitals in the private sector, particularly in the province of Punjab (exact numbers remain uncertain), were offering live renal transplants. In contrast,
30
Bioethics and Organ Transplantation in a Muslim Society
in the public sector, except for the Institute, no institution has as yet an established renal transplantation program, although many do undertake dialysis. (The only other form of organ transplantation currently available in Pakistan is corneal transplants. The ¤rst liver transplant in Pakistan, a lobe donated by an uncle to his six-monthold nephew, was undertaken successfully in the Institute in November 2003. Bone marrow transplants were recently begun in two private institutions in Karachi.) It was common knowledge in Pakistan that many hospitals in the private sector use unrelated paid donors, although this has been declared an “unethical” practice by the Pakistan Medical and Dental Council.5 In a private hospital the cost for a renal transplant, including the kidney, surgeon’s fee, and hospital stay of ten days, can run to as much as Rs. 400,000 to 500,000 (approximately $6,000 to $8,000), with “foreigners” being charged twice as much. Immunosuppressive therapy in the ¤rst year following transplantation can cost another Rs. 15,000 to 18,000 (around $300) per month. In 1999, a total of 725 renal transplants were performed in Pakistan, all with kidneys obtained from living donors.6 Among the donors, 401 were reported as being blood relatives, and an additional 43 were spouses. The rest of the kidneys were obtained from living unrelated donors. These transplantation ¤gures pale in comparison to the 10,000 patients estimated to have been in need of a kidney transplant at the time.7 A primary reason for the low rate of transplants is, of course, the high cost of the procedure in private institutions, keeping it well beyond the reach of a majority of the population, and the absence of a cadaveric organ procurement and transplantation program in the country. Cadaver Renal Transplants
Although the current status of cadaver renal transplantation in Pakistan is not the primary focus of this study, the issue is relevant to the overall situation as well as an understanding of cultural underpinnings of organ donation within the country. It is therefore reviewed here brie®y. There is strong resistance, religious and cultural, to cadaver organ donations in Pakistan. In addition, despite frequent
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criticism by the lay press and pleas by physicians, an ordinance to promulgate a law on human organ donation and transplantation has been languishing in the legislature for years. Similarly, although physicians in the few hospitals that provide tertiary care services including ventilatory support generally employ brain stem death criteria, the law in Pakistan is silent on this issue. No cases relevant to this issue have ever been presented to any court of law in the country.8 Nevertheless, sixteen transplants using cadaver kidneys have taken place in the country in the last few years, all undertaken at the Institute. Of these, fourteen were cadaver kidneys gifted by the Eurotransplant Center in the Netherlands (®own in at the expense of the Institute) based on the recognition and credibility that the Institute and Dr. Ahmed enjoy not only in Asia but also in Europe. Only two kidneys among these were Pakistani, obtained from a young man who sustained brain death following an auto accident in Karachi, and whose parents recalled that he had expressed a wish to donate his organs a few days prior to his fatal accident. One of his kidneys was transplanted at the request of the family into a young man they knew, and the other into a man whose ¤rst kidney donated by a family member had failed.9 The Institute frequently uses this case in its attempts to stimulate cadaver donation in the country. Islam does not have anything equivalent to a central “church” to provide a uni¤ed religious opinion on ethical issues raised by the advent of new and novel scienti¤c and technological procedures. Instead, when faced with novel dilemmas, Muslim individuals and communities rely on the fatawa (religious rulings) of ulema (Muslim scholars), muftis, and fuqaha (jurists) for guidance on what is moral and permissible in Islam. Moreover, whereas in Christianity historically it has been generally theologians and philosophers who have examined what constitutes the moral life, in Islam, which is more “legalistic” in its outlook, this has been primarily the domain of jurists and scholars considered experts in ¤qh, Muslim jurisprudence (akin to the role of the rabbis in Judaism). These religious opinions are based on their study and interpretation of the Qur’an and the Sunna (teachings and actions of the Prophet), analogical review of past rulings, and consensus of acclaimed scholars and jurists belonging to the classic madhab (schools).10 Accord-
32
Bioethics and Organ Transplantation in a Muslim Society
ingly, although differences of opinion often arise in this interpretive process, this is considered one of the strengths of Islam allowing a multiplicity of views. Generally, such fatawa, although carrying signi¤cant authority, nevertheless are not considered as legally binding on all Muslims. Beginning in the early 1980s, there has been ongoing, extensive discourse among Muslim scholars and jurists on how to deal with novel moral dilemmas rising due to rapid advances in medical science and biotechnology. Many of these are available (in Arabic, Persian, Urdu, and English) with details of discussions and opinions on the permissibility, or not, within Shari’a (Muslim law) of medical interventions that include tissue and organ transplantation.11 These opinions may not always be uniform or unanimous, but nevertheless all are grounded in the four “classical” usul (roots) of the Shari’a. These include the two “revealed” Scriptures, the Qur’an and the Hadith (records of the Prophet’s Sunna), supported by ijma (consensus) of scholars and qiyas (reasoning by analogy).12 Also employed are secondary juristic principles such as maslaha (problem), istislah (public welfare), and istihsan (juridical preference). These rely on derivative reasoning such as “necessity makes lawful that which is prohibited,” “hardship calls for relief,” and “where it is inevitable, the lesser of the two harms should be done.”13 Ulema and fuqaha from most major Islamic centers in Saudi Arabia, Egypt, Iraq, and other Muslim countries have generally given fatawa in favor of both live and cadaver renal donation and transplantation, with some even considering it a duty for Muslims to donate organs, as human life is considered sacred. Many have based their opinions on a Qur’anic verse (al-Ma’idah, 5:32) stating that to save one life is equivalent to having saved all humanity. Examples of in®uential organizations that have given positive rulings (while also approving brain death criteria) include the Council of Islamic Fiqh Academy of the Muslim World League (Mecca, 1985), the Organization of Islamic Conference ( Jeddah, 1988), and the Islamic Organization for Medical Sciences (Kuwait, 1996).14 Nevertheless, there is continuing opposition in certain quarters, on religious grounds, to organ donation and transplantation. This includes in particular some of the orthodox Muslim scholars from
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South Asia. Mufti Mohammed Sha¤, a Pakistani Muslim jurist who died in 1976, is the author of an in®uential and widely read text in Urdu that covers, among other matters, the issue of transplantation. In Sha¤’s opinion, all kinds of organ donation, live or cadaver, from one human into another is prohibited in Islam. His reasoning, based on his interpretation of the Scriptures and historical opinions, is that the body is an amanat (trusteeship) from God and not a possession of man to dispose of as he wishes. Together with this is Mufti Sha¤’s conviction that transplantation will inevitably lead to commercial buying and selling of organs, which would violate Muslim belief in the dignity and equality of humans and the sacredness of the human body. Sha¤ considers it incumbent upon physicians and scientists to research and investigate animals and other arti¤cial means to provide replacement for failing human organs.15 Similarly, although the Al-Majma’ al-Fiqhi al-Islami (Islamic Juridical Academy) of India approved live related renal donors in its seminar held in New Delhi in the year 1989, it nevertheless ruled that cadaveric donation was impermissible in Islam.16 The issue of the criteria for pronouncing death has also been discussed at some length by Muslim scholars. In 1986, the permissibility of the criteria for brain death under the Shari’a was the focus of a meeting of the Academy of Islamic Jurisprudence held in Jordan. Participants included many religious scholars from Muslim countries as well as Muslim physicians from around the world. At the end of the discussions the academy “approved” brain death criteria, but a detailed review of the proceedings by Ebrahim Moosa reveals continuing concerns expressed by some of the well-known jurists present at the meeting. (Not surprisingly, the physicians present were unanimous in their support for the criteria.)17 According to the Qur’an and the Sunna, death is the moment when the ruh (soul) parts from the body. The jurists in favor of the brain death criteria argued that as none of the Scriptures actually mention how to determine that this event has occurred, it was the responsibility of the “specialists”—physicians, in this case—to establish when death has taken place. Some argued that the human soul is “unmistakably linked to the brain,” and therefore it was rea-
34
Bioethics and Organ Transplantation in a Muslim Society
sonable to accept brain death as the moment the ruh left the body. In their opinion this decision could be arrived at through the juristic principle of ijtihad (independent human reasoning). Moosa notes that among the counterarguments offered by other jurists present in the meeting, also relying on their exegesis of Qur’anic verses, was that humans are a combination of the body and soul, and there is no reason to emphasize one organ (the brain) as the locus for the soul and ignore the remaining parts of the body such as the heart and lungs. Furthermore, death must be ascertained on “grounds of certainty” ( yaqin) and not merely “legal probability” (zann). One of the scholars questioned how death could be said to have occurred with any certainty “if the body is still pulsating and life is full of mysteries.” Concern was also expressed by some that acceptance of brain death criteria was akin to stepping onto a slippery slope and that an “insane or unconscious” person may one day fall into the category of a dead person. Some of the jurists present also worried that the primary goal of medical science in instituting brain death criteria was to obtain organs. For the vast majority of the population of Pakistan, Muslim beliefs, values, and practices form an integral part of the fabric of daily life. Many children are still reared within extended families that may include three generations living under one roof. They imbibe a sense of right and wrong through frequent references to verses of the Qur’an (considered the word of God) and familiar stories of the Prophet’s life (some reported in genuine Hadith and others apocryphal) that have been passed down through the years. In the “living” Islam of the masses with a low literacy rate, morality is thus largely a derivative of oral rendering of interpreted religious sources passed from one generation to the next. Although it was beyond the scope of my study to assess the in®uence of contemporary scholarly debates among ulema on the population, my interviews with families in the Institute suggest that this was not the case at least when it comes to kidney donation and transplantation. Among the more than one hundred participants with whom I spoke, only two individuals (on direct questioning) offered an opinion that cadaveric donation of kidneys is not permissible in Islam; they believed that the corpse must be treated with respect, and that
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mutilating it in any form is sinful. This was based perhaps on a wellknown Hadith of the Prophet that equates the breaking of the bone of a dead person to the sinfulness of doing this to a living person.18 In Pakistan as in other Muslim countries, burials are done quickly, often before sundown on the day of death. Members of the scienti¤c community, including those in the Institute, nevertheless believe that resistance to cadaver organ donation is due to the population being misguided by the “ignorant mullahs” (a derogatory term used for men who lead communal prayers in mosques) who are not aware of the many fatawa that permit this procedure. It is, of course, conceivable that such men are unaware of the positive rulings of respected scholars beyond South Asia regarding cadaveric donation or, if they are aware, nevertheless remain convinced that this practice is non-Islamic. To the staff, the problem is compounded by other factors such as illiteracy of the general public, disinterest of the government in supporting cadaver donation schemes, and the apathy of members of the medical profession who will not spend time educating the public regarding the high incidence of ESRD and the shortage of kidneys for transplantation. To the best of my knowledge, there have not been any systematic studies conducted in Pakistan to explore the reasons behind this resistance to donate (but apparently not to accept) cadaver kidneys. I suspect that these reasons are complex and multifaceted rather than purely religious in nature. Curiously, I was told that none of the sixteen recipients of cadaver kidneys in the Institute had offered any objections to the surgery. During one of our conversations Dr. Ahmed shared his conviction with me that a cadaver donor program in Pakistan is essential. He returned to this subject on many occasions, and I learned of (and reviewed texts of ) his many presentations and publications emphasizing this point. He laid major blame for the absence of cadaver donation in the country on the medical profession, which, in his opinion, had done nothing to educate the general public or promote such a scheme. He stated: Nobody [physicians] talks about it. I tell you that. Relatives are defensive, but even that is a good change in my opinion. [Physicians in
36
Bioethics and Organ Transplantation in a Muslim Society
the Institute apparently raise the issue of cadaver donation at times with patients and their families]. At ¤rst they used to run away with their patients, but now at least they are receptive [to the idea]. Those who need a kidney, even the “mullahs” agree that cadaver donation is something that should be done. Those who don’t need it [a kidney], it is they who object. They are confused. It is socio-cultural, as I said. How can a father whose son is dying say you can take his kidneys— he thinks mohalley waley kiya kahein gey [what will the neighbors say], what will so and so say, what will the other brothers and sisters say. Sometimes people have said that you can take the kidneys. When we get there, all of a sudden, a daughter will get hysterical. Because until and unless they are educated, and this is where the physicians who come in contact with them are important. They are the ones who matter.
He then offered interesting, and novel, metaphors to explain why in his opinion obtaining organs from a cadaver was the only rational thing to do. I feel strongly that we should keep on trying to persuade families. I would put it like this. If a house is on ¤re, you try to save the house, but if you cannot, you try and salvage whatever you can from it. Or if a ship is sinking, the lifeboats should come out to save as many people as you can. I think of human life in the same way. The doctor should make every effort to save the patient. But when you can’t save him and he is going to die, I think that we should try to salvage as much of the person as possible. We can salvage his kidneys, salvage his lungs, his heart, his pancreas. If we can’t save the man in toto we can keep that man alive in pieces.
In response to my question, he said that yes, he believed that the transplanted parts of the person would still be “alive.” I felt that this was a transplant surgeon speaking with passion to another surgeon also trained “abroad” like him and using language that would be familiar to his counterparts anywhere in the world. Dr. Ahmed, who is amazingly in tune with his culture (his description of the “cultural” rather than “religious” response of the Pakistani family to requests for cadaver organ donation was right on target), broke rank
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with it on this issue, stepping over into the other “culture” that had also molded him, the rational culture of medical science. As I proceeded with my observation and interviews of patients, it became clear to me that in an indigenous culture that is strongly family centered, collectivistic rather than individualistic in nature, and deeply in®uenced by an Islam as understood and practiced by the masses rather than one debated within the walls of scholarly Muslim centers, it would take much more than public education and appeals to reason for a cadaver donor scheme to take root. The Institute: An Ethos of Duties and Obligations
The Institute began its hemodialysis services in the mid-1970s and performed its ¤rst renal transplant (the ¤rst for the public sector) in December 1985. By early 2001 the staff had undertaken over a thousand renal transplants. It was now the largest institution in Pakistan to provide these services and, perhaps most signi¤cantly, was the only institution to do so free of any charge (for dialysis, transplant, medications, and follow-up) to the patient. This fact, together with a reputation for providing excellent care, resulted in patients and their families traveling from all over the country, sometimes for days, to reach the Institute. Poor families, and the majority were abjectly so, sometimes sold their household goods to make the trip. I would see many families, unable to afford any form of accommodation, camped encircled by their meager possessions in the open spaces around the hospital buildings for the duration of the treatment. By 1999 the Institute was performing almost 42,000 dialysis sessions for over 350 patients and over 100 transplants every year. All donors were blood relatives of the recipients—siblings, parents, offspring, maternal and paternal aunts and uncles, cousins—or, in a few cases, spouses.19 The data I reviewed, unfortunately, did not include information on how many of these spouses were also related by blood. (First- and second-cousin marriages, permissible in Islam, are common in the country, and my interviews revealed a number of such donor-recipient pairs). On moral grounds, healthcare professionals adhered strictly to a policy of using only genetically related donors and, furthermore, refused to transplant a patient if they sus-
38
Bioethics and Organ Transplantation in a Muslim Society
pected that money had changed hands between the family and potential donor. The Institute had over seventy hemodialysis machines, with ten in use round the clock, seven days a week. Ten of these machines were reserved for patients who were positive for Hepatitis C infection. But with the constant stream of new patients arriving in the emergency room day and night, the number of hemodialysis sessions that were possible was no more than the proverbial drop in the ocean. As a result the Institute dialyzed patients twice a week for a total of eight to ten hours rather than the ideal three dialysis sessions per week. As one physician told me, “we know that this is not ideal, but at least we can keep them alive until we can ¤nd a kidney for them.” And ¤nding a kidney to save the life of the patient was the fuel that drove many of their interactions with patients and their families. The operative principles were a ferocious benevolence toward and advocacy of patients who were perceived as powerless to act for themselves in the face of life-threatening illness. Added to this was the staff ’s shared sense of a form of social justice in which it was the moral obligation on the part of all, physicians and families, to do whatever was possible in order to save a life—a professional duty on the part of one and a familial responsibility on the part of the other. By the year of my study the number of patients waiting for a transplant was almost ¤ve hundred. The faculty was aware that the only way they could make even a dent in the seemingly Sisyphean task they faced was by transplanting as quickly as possible as many patients in the over®owing system as they could. Each time they transplanted one patient, they opened a slot to accommodate another from among those streaming into the dialysis program. This meant that donors from among the family members had to be found, and convinced by whatever means it took, to donate a kidney. The ploys used included reasoning, coaxing, scolding, shaming, reminders of family obligations (cultural and religious), and even occasional threats to discontinue dialysis on the patient (a threat I never saw carried out in reality). In Pakistan’s family-centered, religious society, bioethical principles such as autonomy, individual rights, and privacy were acknowledged
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but almost always trumped by a single-minded focus on professional obligations. This meant utilization of the healthcare professional’s authority to render what was considered justice toward a patient who was critically ill but with a “curable” disease. The science and technology I saw employed was the same as that in the West, but in its application physicians were guided by values, traditions, and the socioeconomic realities of a vastly different world. The brief and direct question at the end of interviews with family members in the pre-transplant clinic was always “Theek. Gurda kon dey gaa? [OK. Who will give the kidney?].” This approach of the staff was supported by their con¤dence in the Institute’s respectable track record of no donor mortality and a success rate of transplants done to date that was comparable to that reported by established programs in the West. Their data of transplants done until the year 2000 revealed one-year and ¤ve-year graft survival rates of 92 percent and 73 percent and recipient survival rates of 95 percent and 81 percent, respectively. In addition, the Institute had reported a rate of return to full employment among those transplanted as being almost twice that of those being maintained on hemodialysis, 61 percent versus 34 percent.20 The Institute also undertook measures to enable patients, transplanted or on dialysis (and sometimes their family members), to learn skills that could help supplement their livelihood. The Rehabilitation Unit in the new building, staffed by laypeople and volunteers and supervised by the in®uential social worker Ms. Azra, functioned ¤ve mornings a week for classes in sewing, embroidery, painting, making small handicraft items, and learning to use computers. Most of the equipment for this unit, including sewing machines and computers, had been obtained through zakat and other donations from Pakistanis.21 Key Male “Players” in the Institute
All the healthcare professionals I met, observed, and interviewed during my three months in the Institute contributed to deepening my understanding of the values that formed the scaffold on which the institution rested. But there were some among them, both male
40
Bioethics and Organ Transplantation in a Muslim Society
and female, whom I perceived as the “movers and the shakers,” some forceful and others more subtle in their styles; a mosaic of diverse individuals, some who had played a part in laying the foundation of the institution, and others who joined later and added their own perspectives to help sculpt the ¤nal form. Dr. Badar, Senior Nephrologist
Soon after I arrived I had noticed in the ®ood of patients that besieged the Institute every day several who had been on chronic hemodialysis for as long as two years while the staff continued, unsuccessfully it seemed, to convince a family member to donate a kidney. And yet in the pre-transplant clinic I would often observe reluctant family donors being threatened by healthcare professionals that if none agreed to give a kidney the patient’s hemodialysis would be discontinued. I asked Dr. Badar whether such patients were referred elsewhere to accommodate others in the program who had willing donors in the family. Did he remember instances when they had refused to dialyze a patient when no donor seemed forthcoming? No, no [not any longer]. It was easy before. There were some private dialysis centers before that used to take some patients. There is still one in Karachi that will dialyze free of charge. There were a few more in the past that used to dialyze free, and we used to refer [patients] to them. . . . .Then came the National Dialysis and Transplant Program [NDTP] in the mid-1990s. . . . The government said that all patients who are non-affording, they [the NDTP] will pay for it [the dialysis]. The government said the money will be Rs. 1,300 to Rs. 1,500 (approximately $20–$30) per dialysis session. That was enough for dialysis centers to make some money. All of a sudden all sorts of dialysis centers began to ®ourish, even small centers with three machines or four machines. . . . .There were so many patients that the doctors started to make money. Those patients who expired were still, on paper, having dialysis. There was a slip for each patient [that was] sent to Islamabad to get money back [reimbursement] . . . [and also] there were patients who were never on dialysis. There was so much expense that the government could no longer afford this scheme so it was of¤cially stopped about two years ago. When this happened,
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there were all these patients on dialysis, and these centers said OK, the government cannot pay. So the small centers and the larger centers refused to dialyze them. So many of these patients came to our dialysis center, and our policy is that we don’t say no, so our dialysis population jumped suddenly to almost twice.
During another one of my conversations with him in the clinic, Dr. Badar told me that he felt “very bad” when he came across patients, particularly the young, for whom no donor could be found. It is like giving them a [death] warrant. I get so upset that I escape to the wards and make rounds. I wish I only had to make medical decisions. When we have such patients we do not refer them to Ahmed sahib [to whom all “problem” cases are referred]. He gets very upset when the patient is young. He becomes very angry, has a tantrum. [I asked, why?] Because this is a young man. So the ¤nal decision has to be made by me. This is bohat mushkil [extremely dif¤cult] for me. I think the most dif¤cult decision is to say no, to say OK you can’t bring a donor, a family donor, or for some reason they have a family donor but with the wrong [blood] group, so we can’t offer you further dialysis. I think that is the most dif¤cult.
I told him that I had heard some of the patients and families being told in the pre-transplant clinic that the patient would be dialyzed for only six to eight sessions and no more if a family donor could not be found. I think that is because we keep trying, to keep on giving them a chance. We say, OK we won’t dialyze you this time. Bring your donor, after one week, two weeks, giving them a chance to put pressure on the family to come with a donor. But to just say no, that I will never dialyze you. I have never done that.
But what happens when there is no donor to be found, I asked. If they have got no donor, there are two classes. One is where there is no “willing” donor, although they have brothers and sisters or somebody [else]. There are [potential] donors in the family, but they
42
Bioethics and Organ Transplantation in a Muslim Society
are not willing to donate. That is one class—“No Willing Donor.” The other class is “No Donor.” Although for some reason, like he has the wrong blood group or he is O+ and the rest of the family is either A, B, or AB. The “No Donor” we will continue on hemodialysis because it is no fault of his or his family members. The “No Willing Donors” we will keep on pestering them, to put pressure and to come with a family member [who can donate].
I pointed out that I had seen patients on dialysis for almost two years. Did they continue dialysis on both classes of patients? Yes, but they [No Donor group] will not be pressurized because we have done everything, and there is actually no donor in the family. That person, if he is lucky, if there is some cadaver kidney coming from Holland, he can get a chance and get a transplant.
And what happens to the No Willing Donor, I asked. No, he is not on the [cadaver] list because he has a family member who is not coming forwards. Because if we do that, then there will be a message that OK, don’t bring a family member, you will have a chance [for a cadaver kidney].
But isn’t that like punishing the patient just because his family is not giving a kidney? You can say that it is like a punishment. I would say that there is a lack of education of the family. . . . We are so hard-pressed that we can’t pursue the family, that we can’t educate them that if you donate a kidney there is not going to be any harm [to you]. It is not all the fault of the patient, but the poor patient is being punished. Our problem, on the other hand, is that we have severe limitations. We are dialyzing more patients than we have the capacity.
I learned that Dr. Badar, a gentle, bespectacled, soft-spoken man in his ¤fties, who had been with the Institute for almost ten years as a nephrologist, had trained and worked in the UK for nine years before returning to Pakistan. He was the father of a daughter and
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twin sons, and his wife had recently resumed her career as a school teacher. I asked him to tell me why he had returned to Pakistan after all these years. Main reason was that my mother was ill. She had a stroke in 1988. . . . I am the youngest son, but I am the only doctor in the family. After the stroke she was having recurrent problems. I felt obliged. I felt when I was young she was always there to look after [me], and now she has become old, and I am looking after my career and not looking after her. Although I had a house [in the UK] and a British nationality. . . . Initially, the ¤rst few years de¤nitely, ¤rst ¤ve or six years [were very dif¤cult], because here [in Pakistan] I felt that my spending power was not as much as it was [in the UK]. And I had to keep looking after my mother. She died in, I think, 1997. I had come back in 1992.
When he returned to Pakistan, Dr. Badar, as one of the handful of trained nephrologists in the country, had received offers of employment from several institutions and also had an option of lucrative private practice in town. I asked why he had chosen the Institute instead. Right from the beginning, when I was a student, my idea was that number one to do my postgraduation. And . . . [then I] wanted to serve people who couldn’t really afford a post-graduate quali¤ed or a good physician. That was my idea. And when I joined here, I think that this dream was ful¤lled. And I am getting enough money for my bread, just to survive.
I once mentioned to Dr. Badar a man I had just interviewed who wished to donate his kidney to his eighteen-year-old daughter. I spoke of the wretched circumstances of the family: abject poverty, the wife dead, the only adult son a drug addict, no uncles willing to donate, and the man himself, a manual laborer, stooped and wornout at forty-two years of age. Dr. Badar said with a small smile: I have stopped giving money to the beggars on the street. Asal ghurbat to yahan hey [Real poverty is seen in the Institute]. Sometimes when
44
Bioethics and Organ Transplantation in a Muslim Society
one of our patients dies, the family does not have enough money to transport the body back to the village. One night we took up a collection [from the staff ] to help. When a patient becomes very sick, his family will say to us—hamein dey dein [give him to us]. It is easier [less expensive] for them to take him home by train when he is still alive than transport his body after his death. When we transplant someone, often his entire family will sleep under a tree in the hospital compound. We provide food to the patient, but the family may not have enough money for their own meals.
I mentioned to him that I had observed direct pressure by physicians, even anger and emotional blackmail, used as ploys to get reluctant family members to donate. What were his thoughts about this, I asked. I think the only time I get really angry [with families] is when forty¤ve- or ¤fty-years-old parents need a kidney, and none of the children want to give one. I think to myself that here is the parent who has given so many years to his children and has done everything [for them], and now maybe he has ten years or so left [to live], and they won’t help him. And I get angry and dant deta hun bachon ko [scold, chide, reprimand the children].
Dr. Badar told me how he often watched helplessly as patients waiting for a transplant steadily deteriorated in health. I see fat patients become like this [he held up his index ¤nger], a lot of malnutrition, and then sizes of heart that go from this [he held his ¤nger and thumb four to ¤ve inches apart] to this [he doubled the distance between his digits]. We have to get kidneys for these patients. I could never do this in private practice. Here I know that more transplants do not increase any bene¤t to me personally except increase my work. When I order a renal biopsy it will not make more money for me.
To Dr. Badar, a product of Pakistani culture, it was clear that family obligations must be honored (as he had done), even if this
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resulted in signi¤cant repercussions for an individual’s life. This strong belief in responsibility toward kin, grounded in culture and supported by religion, is the linchpin for a professional morality shared by the staff.22 I came to recognize it as a form of “relational morality,” a way of seeing, feeling, and interpreting life events that formed the ethical framework of the Institute. In this relational morality, very distant to an ethics of individual rights, it was considered a duty for family members to donate a kidney to save the life of kin. In my interviews with families, products of the same culture as the healthcare professionals (as I demonstrate in subsequent chapters), I sensed a similar vein of lives built around familial obligations and duties. It was decipherable in the words of those who were eager to donate a kidney, but also re®ected in the visible shame and embarrassment of others who were reluctant to do so and in the facesaving “excuses” that they felt compelled to offer. It provided a deep contrast to the language of secular bioethics in which donating an organ is considered a supererogatory act, one that “is praiseworthy but optional, even if living donors view their acts as obligatory.”23 In the Institute, in addition to the obligation of the family toward kin was an equally strong sense of the physician’s responsibility to patients in a ¤duciary rather than an “equal” relationship. Bene¤cence and a sense of justice toward critically ill patients peripheralized all other ethical considerations, not because of any claims to rights or power or equality by patients, but precisely because in their illness they were seen as vulnerable and without defense and thus “unequal.” For Dr. Badar even after all these years, an inability to honor a deeply felt obligation to save the life of his patient, his nonsuccess in locating a donor, was sensed as a moral and personal failure, powerful enough to make him “escape” to the wards. Dr. Ahmed, Transplant Surgeon and “Sir”
Over the last two years the Institute had continued to bear the brunt of the failure of the government’s dialysis program (NDTP); its ®ood of existing patients was now a veritable deluge. Its annual cost of dialysis and transplant in the year 2000 was approximately
46
Bioethics and Organ Transplantation in a Muslim Society
$2,000,000. To ¤nance its free services the Institute utilized “a community-government model wherein the state supports the salaries and infrastructure of the center and the community collects funds for equipment and medicines.” Individuals and national organizations provided donations to equip operating rooms, laboratories, and the radiology department, and companies often subsidized equipment or offered free maintenance.24 An endowment that developed over the years also helped to run the program. The search for donations was an ongoing, critical struggle for an Institute that proclaimed “nobody who reaches us will be denied treatment.” As government support for the program covers only 35 percent to 40 percent of the total cost of dialysis and transplant, Dr. Ahmed and his staff run a continuous campaign for donations from individuals, foundations, corporations, and other organizations.25 The faculty helps through educational contributions to the lay press describing renal and urological problems in Pakistan and the role that the Institute is playing in addressing these. Much of the success in raising community support for the Institute (unique for a public institution in the country) is due to the regard in which most Pakistanis hold the Institute. It is considered to play an exemplary role in its contributions to a country with widespread poverty and healthcare systems that are either inadequate or out of reach of the common person. The Institute has a national reputation of being run by welltrained, sel®ess staff and is frequently the focus of laudatory articles and editorials in the popular press. It is described as “an island of excellence,” as “a fairy tale in Pakistan where health care is the most neglected sector,” a “breath of fresh air” within “the stagnation that characterizes the social sector in Pakistan,” and praised for its “mission of providing the best medical services to all without any economic distinction.” Dr. Ahmed has been characterized by one journalist as someone who “could have made a lot of money if he had sold his soul,” but did not.26 The evolution of the institution from an eight-bed urology ward in 1972 staffed by a handful of urologists to the current autonomous Institute (under decree of the provincial legislature in 1993), with
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close to three hundred beds spread over three buildings and with over thirty full-time faculty members covering different specialties, was an intriguing story. It highlighted the centrality of Dr. Ahmed in the Institute, his talent for melding disparate people and binding them for a shared struggle against immeasurable odds. For many, both within and outside the walls of the institution, the charismatic “Sir” was the moving force behind the Institute; to some he was the Institute incarnate. Dr. Ahmed, a man in his sixties, has two grown children, both physicians and pursuing postgraduate training in the United States, and a wife who is a practicing family physician. He related to me with relish how he took on “the challenge” to develop the urological service and then the dialysis and transplant services upon his return to Pakistan in 1971 from the UK after eight years of surgical training and his fellowship from the Royal College of Surgeons. I asked him what had attracted him to develop renal transplantation in Pakistan. Actually what ¤rst got me interested in kidneys was when I was rotating through 1 Hospital in my fourth year [as medical student]. . . . I can never forget, it is something permanent in my mind. There was a patient who was restricted from ®uids [due to renal failure]. He used to climb down from his bed, and after the ®oor had been mopped, he used to put his tongue on the ®oor [to lick the moisture]. We could do nothing for him, and ultimately he died.
I asked him if he had ever had second thoughts about returning to Pakistan after completing his surgical training in the UK or even continuing to stay on in this country. He said, Everybody thought that I was going to leave [go back to the UK]. There was a ward boy, I think he may be still around, who used to tell me in meethi [melodious] Punjabi [a local dialect], “you too will leave, and ussan muk jawan gey [we will be ¤nished or destroyed here].” He used to say, “I have cooked parathas [special Pakistani bread] with my own hands for you doctors, but now you have be-
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come wadda [big, important] people [and will leave Pakistan].” But I never wanted to stay there [UK]. Never. When they interviewed me there, the English, you know how they are [he mimicked a man with a rod straight back and pursed lips]. They said to me, what will you do in Pakistan; there are no operating rooms there. Are you going to operate under a bunyan tree? And I said, Sir, surgery was started under a bunyan tree by Shasustra [a Hindu surgeon of ancient times].
He related how he managed to expand his eight allocated urology beds into an independent urology ward in a vacant ward in one of the old buildings of the hospital. He said he did this with help from “ward boys” with whom he used to drink tea in the staff canteen, an act looked upon with disapproval by his colleagues in the hierarchical Pakistani society. New beds had been delivered for Surgical Ward I, and all the old beds had been thrown on the roof. I used to sit in the canteen, and there was this ward boy who used to come there. His name was Babu, and he said he could ¤x these beds for me. He told me, “Don’t worry. I can take the parts from two beds, they are all broken, and join them to make one [good] bed.” . . . So one day we had the beds ready. I placed a crate of Cokes at the bottom of the steps [leading up to the vacant ward] and another at the top. This was so that when people carried the beds up, they could drink a Coke after each one. By 2:00 a.m. that night we had moved twenty-four beds into the ward. [He laughed.]
Dr. Ahmed explained how initially he ran into trouble with the hospital administration but gradually things sorted out as his patient volumes rose. “I was very fortunate to have a good team with me. They were all superb.” In the team he included several lower-level non-medical staff several who had helped him to initiate animal research.27 I don’t know if you have met 1 who works with us in transplants. In those early days I had hired him for the animal lab. He used to sleep with the guinea pigs on his chest so they would not get cold. He helped us with our ¤rst transplant—he knew every patient
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inside out. Sometimes at night, around 1:00 or 2:00 a.m., we would get drug levels back on a patient, and he knew where every patient lived in the city. He would go and ¤nd them for us, knocking on their doors at 2:00 a.m. He would also sit with our patients [to watch them through the night]. And then there was 1, a ward boy. And also 1 who now works in dialysis. . . . They were all gold mines in helping us build the [transplant] program.
During my interview with Dr. Ahmed I raised the issue of the universality of medical science and the particularities of cultures such as within Pakistan. Perhaps misunderstanding what I had meant, he responded passionately. Yes but it is this very culture [Pakistani] that motivates these doctors to work in this country. Pakistan is one of the most maligned countries. . . . This is our reputation in the world, that we are cheats, smugglers, all those things. . . . We [Pakistan] have only been in existence for ¤fty years, but we [the Institute] have everything that the patient needs, almost everything possible. Can you quote anywhere where seven theaters [operating rooms] are running around the clock? Our budget is going up by 8 crores [Rs. 80,000,000] every year. . . . look at the people. How caring they are, how generous! Everything we do in the Institute we have achieved from their donations. They never ask if we are going to transplant a Christian or a Hindu or a Shia or a Sunni or a Parsee or an Ahmedi. . . . Everything else [he had mentioned some of the donations the Institute had obtained from other countries] has come from them. This way they know this is their national institution, it is free for them. . . . .I have been asked time and time again, you must levy at least some charges. They say how can you keep on treating people free?
Dr. Ahmed was adamant in his conviction that accepting any form of monetary compensation, even from af®uent patients (as suggested by some of his own faculty), was out of the question. This would destroy the moral ethos of the Institute and the “the transparency” of the entire undertaking in the eyes of the public. To him the Institute had a social and moral contract with the community. He said that “more than 90 percent” of the patients and families “do pay
50
Bioethics and Organ Transplantation in a Muslim Society
us back in one way or the other.” The donation of money for the new building was cited as an example. He related other instances such as the offer by a transplant recipient with a laundry business to wash the Institute’s linen free of charge, or the patient who provided free white coats for the faculty and staff. I broached with him the dif¤culty at times for physicians to convince patients to bring in family members as donors and at other times the reluctance of the latter to donate a kidney. He agreed and said: There are two ways. One is to tell the family—this is your mother and she needs a kidney. If you don’t give her one, she will die. That is our “pet” sentence. But if you ask me, the patient is in no position to dictate to them [the family]. The whole society has to ¤gure in this. The patient is suffering, and we are saying [as a threat] that we will convert you from hemodialysis to peritoneal dialysis.28 . . . And this is a self-confession, I will tell my team OK, put them on peritoneal dialysis, but outside the door I will tell them no, give them hemodialysis. [This approach of Dr. A’s was con¤rmed to me by at least a couple of senior faculty]. That is why when they [the physicians] are taking these decisions, I rarely go there. Because what I think is, I am the patient and I have ¤ve brothers and six sisters with two cousins, and they are refusing to give me a kidney. Or refusing to give a kidney to a daughter.
I asked him if such refusals made him angry. Yes, it angers me. [He continued with a faraway look in his eyes.] . . . I remember a girl once, her name was 1. She was beautiful, like a rosebud. It was a rich family. Five brothers, all engineers, and they wanted me to get a kidney for her from Edhi.29 None of them wanted to give their sister a kidney. So they took her to Bombay and had her transplanted there. She came back with fulminant tuberculosis and she died. . . . The worse thing was that except for smiling at times, this girl would just sit there quietly, say nothing. And when they brought her back, I just wished . . . [He did not complete his sentence.]
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We talked about the stresses and dif¤culties in dealing with the tremendous numbers of patients and their families every day. The only thing I preach to the doctors, not in front of the patient but outside, is that when you pass a harsh judgment on the family [who are reluctant to donate], please don’t forget that there may be another point of view also. . . . But after a while you come across someone else, someone different. There was this journalist who had a younger brother he had raised like his own son. This young man needed a kidney, and the journalist wanted to donate his kidney. He had had one or two attacks of angina, and he would have been a marginal case. . . . We are always very careful about donors. We do not want to risk their lives, and it would not be good for the program as a whole. . . . [But] he said that he wanted to give his kidney to his brother, and I told him that he could die. He said to me, “Doctor sahib, I will die even otherwise if my brother dies.” So I told him we would take his kidney. Fortunately everything went well. It is almost ten years now, and both are doing well. . . . You will come across a poor family in which everybody is keen to donate. You have to actually push them away.
In my interactions with Dr. Ahmed I was left with the picture of a charismatic man, an idealist with an almost messianic zeal, coupled with seemingly endless energy and an eagerness to ®y in the face of ground realities. My observations repeatedly con¤rmed his unquestioned authority as “Sir,” with power legitimized by staff and patients and families alike. He engendered a respect that bordered on adulation. Professionally, Dr. Ahmed was deeply caring toward his patients. He worked with a conviction that he was ¤rst and foremost an agent of his patients, but this was clearly not a relationship between equals; it was a relationship between a powerful physician and vulnerable patients in need of his benevolence and medical skills. In many ways he embodied Howard Brody’s description of the three kinds of power that physicians hold: Aesculapian (by virtue of training), charismatic (via personal qualities), and social (through a contract of professional authority with society).30 In Pakistan, Dr. Ahmed had additional sources of power; he was a member of a
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society that accepted hierarchy and condoned authority as ways of achieving social order, and a religion that has historically accorded to physicians an exalted position as instruments of God’s mercy on earth. Dr. Khalid, Transplant Surgeon and Administrator
Dr. Khalid was a tall, slightly built man in his ¤fties, a urologist and transplant surgeon by training and the oldest son of a family practitioner father. He was among faculty members who had worked the longest with Dr. Ahmed, their association going way back to the time when the latter was surreptitiously moving reclaimed beds onto a vacant ward. Dr. Khalid shouldered much of the administrative responsibilities in the Institute and was constantly on the move between the three buildings, a cell phone held to a harried ear. In my interview with him, frequently interrupted by the ringing of his cell phone, I focused on his reasons for joining the Institute. Dr. Khalid joined Dr. Ahmed’s unit soon after graduating from medical college. In his words, “I am totally indigenously trained, right here.” He related how he ¤rst met Dr. Ahmed in 1973 soon after graduating, a time of severe ®oods in the province of Sindh. The Pakistan Medical Association had established a camp, headed by Dr. Ahmed, in a village in Sindh to assist the effected population. Dr. Khalid volunteered to help. We used to call him [Dr. Ahmed] the “Commandant” of the camp. . . . When I arrived there I was dressed in a shirt and trousers, and the ¤rst thing that Ahmed sahib said was . . . now change into a shalwar and qameez [native Pakistani garb consisting of a long loose shirt and baggy trousers] as this is a local affair. . . . Then he said, put on this hat, the kind that cricketers wear and a pair of gumboots. I said that I understood the gumboots, there is a lot of water here, but what is the hat for? The camp was in a depression under a tree, and we didn’t have a roof. So Ahmed sahib told me—all the snakes, due to the ®ood, have gone up [crawled into the trees to escape]. As they have nothing to eat, they become weak and fall, and when they fall they fall on you.
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Dr. Khalid described how Dr. Ahmed was able to persuade other health agencies in the area (involved in eradication of malaria, tuberculosis, diarrhea, other diseases) that had also been assigned “®ood duties” to join his camp. All the equipment each group had, such as microscopes, were pooled. We . . . impressed them [the agencies] so much [with the work the camp was doing] that they . . . made this [the camp] their station. . . . In the evenings we used to go and visit the villages [to see patients]. [Dr. Ahmed] felt that these people [of the agencies] did not trickle down [reach people] where they should. . . . That somehow they were not able to approach the people [develop rapport]. . . . When the vaccinator for the small pox program would come to a village, the villagers would literally set their dogs on him. Ahmed sahib said that unless the villagers can be provided something curative, a bene¤t they can see, they will never understand these things [preventive measures]. And we were able to provide this [therapeutic interventions] in a small way.
He related how they saw a woman in congestive heart failure and felt that this was related to her severe anemia as con¤rmed in the rudimentary laboratory set up in the camp. Dr. Khalid was dispatched to Karachi (several miles away) to a blood bank to get packed blood cells; the woman was transfused and got better. He said that such cases rapidly won the trust of the village community. All this came about because we saw a patient and we reacted. . . . Ahmed sahib was able to instill this in all the members—that you have to give them something for them to feel that you really care for them. . . . After that we began to help them [villagers] to build latrines, educate them in hygiene. . . . They [the villagers] told them [the local government] that this camp is unique. . . . They said that prior to this they had not even seen the shakal [face] of any doctor here.
Dr. Khalid spoke about how the villagers requested that the camp be converted into a permanent health center. The medical services
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Bioethics and Organ Transplantation in a Muslim Society
were accordingly relocated into a vacant house [donated by a man of the village who had moved to Dubai] and with the villagers’ help the health center was set up in two weeks. Dr. Khalid said that this made everyone realize how much could be accomplished through “community participation. Perhaps that was the time when we thought we could do much more.” He decided to stay on with Dr. Ahmed despite his father’s wish that he begin private practice and help support the family. He narrated how they began a system of getting the community to help them expand the Institute. [In the beginning] Ahmed sahib used to go for private practice in the evening.31 He used his evening practice to gather people who he would treat free, do procedures free of charge. Then he would send them here. The ¤rst one [who helped] I remember. We had started peritoneal dialysis, and the ward was very warm, and we needed an air conditioner and help with the [dialysis] ®uids and so on. That’s how it started trickling in. We felt we couldn’t do anything within the [government] system. . . . We had to take permission for everything. . . . We got sick of writing feasibility [studies] that never saw the light of the day. . . . In the beginning we had to ¤ght the administration. . . . Then people from the community began to approach us and offer help, and things began to improve. . . . We would . . . make a simple scheme and would contact people and say, if you could give us a donation you will be able to bene¤t such and such number of patients.
He told me of the hectic early days when they initiated the dialysis program and the reason they felt compelled to initiate renal transplantation. It happened that Ahmed sahib lived very close to where we did, and I had a small, very old Volkswagen which my father had given to me when I was in my ¤nal year [of medical school], and he would drive with me to the hospital. There were times when he and I would stay there for three to four days at a stretch, because we were very short on staff. And then when we would leave, we would realize that we had forgotten where we had parked the car. [He laughed.] . . . and
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we continued with our dialysis program. We then found that we had a group of patients on whom we had to remove kidneys, and they were on dialysis. So we said where do we go from here? We said we have to give them a kidney. Ahmed sahib meanwhile had gone to UK for a three-month period to learn renal transplantation. . . . [He laughed.] He still has the capacity for working as a house of¤cer [resident]. In many ways he still functions as a house of¤cer. . . . He doesn’t like meetings, etc.
I asked him what he felt were some of the particular dif¤culties related to local culture that they had to deal with in dialysis and transplantation. The dif¤culties? OK. As we began, we realized that it is not just the patient, it is the family we have to deal with. . . . Within our particular context, if the family is not supportive, does not understand [what has to be done], one thing we have to do is trace [¤nd] among them a family member who can understand these things. If he is smart then we have to see how much time he can give. . . . We can tell him all the issues, and he will be able to explain everything to all the other members. But then, wo ghaib ho jata hey [he will disappear]. [Perhaps, he feels] he has brought the patient and other members to the hospital and introduced them to us, and now the rest is up to them. And we are back to square one with the patient and the rest of the family.
Dr. Khalid related how the socioeconomic conditions of the patients they saw, and the fact that they often arrived late in the disease process, also contributed to the problems that they had to deal with. We cater to some of the poorest people in the community. By the time they reach us in renal failure, not all the time but quite often, . . . they come to us totally drained, having spent all their resources. . . . Some of the so-called private sector is very dishonest towards this unfortunate group of people. You have to tell them the truth, not submit them to all kinds of measures and dialysis, and when they have nothing left, then send them to us. If the patients had been told from the beginning [that they need a transplant], perhaps they would have been able to plan better. But we see them when their marriages have been destroyed, assets and possessions gone, their homes sold,
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Bioethics and Organ Transplantation in a Muslim Society
car sold, because they had thought that he will be all right, cured. Then when they ¤nally come to us, we ¤nd that they are often more dif¤cult to convince [to donate]. They have been shattered totally, in all respects, not just ¤nancially. They no longer know what to believe, and what to think and so on.
When I asked him to relate any particular case that had troubled him the most, he related the same case which Dr. Ahmed had, that of the young girl with several brothers, none of whom was willing to donate a kidney to her. There were several “paradigm” cases that many healthcare professionals would recall for me, cases which I sensed had played a key role in evolving a common moral worldview among the staff, and which in®uenced interactions with patients and families. Her brothers would bring her. She was miserable on dialysis. We banged our heads, but none was ready to donate. We had them meet other donors—by that time I think we had done about six hundred cases. We told them look, we have no mortality, the donors are all well adjusted, settled. It is nothing—it is a simple procedure. We told them everything. We tried to play on their emotional involvement. This is your sister—she will be dead. She is your only sister, she will be dead because of the way she is tolerating dialysis. You see in those days we did not even have bicarb [bicarbonate], so we used to do acetate dialysis. Patients used to vomit, they were miserable. We would tell the brothers that she will die, and her blood will be on your head.
When I inquired whether they had ever considered the fact that the brothers may have a right to refuse to donate, he said simply, “No, we did not think that way. We were very angry. We felt they had no right to take the life of this pretty girl when they could easily donate. Why were they not able to understand?” I probed Dr. Khalid about the “mechanisms” I had observed being used by staff to convince families to donate. He interjected before I could complete my question by saying, “you mean stopping dialysis.” I said yes and mentioned also the threats to replace hemo-
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dialysis with the much dreaded peritoneal dialysis. I asked if he felt these means were effective in increasing the number of donors. I would think marginally only. I believe that they [patients and families] understand that we will not be able to do this. . . . After a few days they become very “street-wise.” [I was to hear variants of this opinion from other staff members]. I think they intermingle there [in the pre-transplant clinic] and talk to each other, so we lose this option. We have noticed another thing. We stand the best chance [to get a donor] if we can convince them early. Once they [patients] have been on dialysis for a while their chances of getting a transplant are very, very minimal. Everyone seems to adjust—[they feel] well, the dialysis is going on ¤ne, we don’t have to pay anything, etc.
He told me that they maintained a surgical waiting list for patients who needed transplants based on how long they have been on dialysis, and how this also sometimes resulted in their losing donors. A more recently seen patient may have a willing donor but would be told that “you have to wait your turn, there are others in front of you.” When this happened, during the delay in proceeding with the transplant “some fool or the other will talk to the [willing] donor and say what are you doing, etc.,” and he would change his mind. Dr. Khalid felt that the way to circumvent this was to begin to transplant every day, with a “fast track” for the families who arrived with a willing donor. (The Institute currently undertakes transplants three days a week.) For Dr. Khalid too, it was professional obligations to patients and familial duty to kin that took primacy above all considerations. He openly admitted, and freely verbalized to me, his anger at family members who refused to donate, and admitted to no hesitancy in moving beyond rational persuasion to direct pressure on the family in order to obtain a kidney for the patient. Like many others I observed in the Institute, he did not maintain a dispassionate distance in his practice, choosing instead to get emotionally and personally involved. I once asked Dr. Khalid why, despite all the other options he had
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as an experienced urologist and transplant surgeon for a better and more comfortable lifestyle, he continued to remain in what was an obviously demanding, stressful life. He replied that this was because he knew that what he could achieve working in the Institute with Dr. Ahmed would not be possible anywhere else in the country. Dr. Khalid, considered by many as the second in command in the Institute, seemed to deeply share and uphold the goals of the Institute even as he struggled daily with overseeing the many pragmatic dif¤culties of running such a program. Key Female “Players” in the Institute
Two female healthcare professionals, a social worker and a nephrologist, occupied pivotal positions in the Institute, and through their in®uence on the selection process of donors, each contributed in seminal ways to the moral ethos of the Institute. Both women employed a very personal prism through which to ¤lter and view realities of life, especially for women, within the context of Pakistani families. Each was guided by a particularized understanding of indigenous values and beliefs based on personal life experiences accumulated while growing up in Pakistan. They observed and interpreted the dynamics of lives of patients and families through an experiential prism and modulated their interactions with them accordingly. The two women (together with Dr. Badar, the chief of nephrology) played decisive roles in the selection of donors among family members who presented to the pre-transplant clinic. Although this weekly clinic was staffed with several residents, dieticians, and transplant surgeons, these three individuals functioned as the social and moral “gatekeepers,” but with an essence and style that was distinctly Pakistani. Decisions about the suitability of who in the family should, or should not, donate a kidney took into account medical considerations. But the gatekeeping was also contextual and selective, based on each individual’s understanding of the varying dynamics of lives within extended families rather than a textual notion of the “equality” of all members in a family. On several occasions I observed the two women, who were not
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always in agreement, close ranks to form a bulwark against a family tide (and occasionally male physicians) that they perceived as ready to “sweep away” a woman into donating a kidney before males in the family had been identi¤ed and investigated as potential donors. This in my opinion remained one of the prime reasons for my ¤nding of the remarkably even male to female donor ratio within an Institute that was located in the midst of a male-dominated society. A survey of living renal donors from 250 transplant centers in forty countries around the world between 1982 and 1998 reveals that the incidence of female donors is signi¤cantly higher than males, ranging from 54 to 62.2 percent.32 Similarly, a report from the United Network of Organ Sharing (UNOS) in the United States indicates that among live renal donors (from 1990 to September 1999), the overall incidence of female donors is 56.8 percent (57.9 percent in 1999).33 It was with this knowledge and my own notions about the status of women in the world in general that I had ¤rst begun to review the gender breakdown of the number of male versus female donors in the Institute. I discovered that in the ¤rst 100 transplants performed in the institution there were 63 female donors. But to my surprise, the ratio of male to female donors had gradually reversed to 50.1:49.9 by the time the 1050th transplant had been performed. Undoubtedly this had much to do with the Weltanschauung of the two powerful women, especially the social worker, in which women were perceived as “powerless” within some families and thus requiring protection. What was also clear was that this view was also subscribed to by some of the senior male physicians, especially the three noted above. Ms. Azra, the Social Worker
Ms. Azra, with a graduate degree (MA) in sociology from the Karachi University, was a woman in her forties. She joined the Institute in early 1986 soon after the ¤rst handful of transplants had been accomplished, and she had come to be accorded tremendous respect by everyone in the Institute. She was addressed as “Madam” by all, residents, staff, patients, and many consultants alike. Patients sometimes referred to her as “doctor sahib,” and I never saw them corrected. A serious, stocky woman with her brow often furrowed,
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Bioethics and Organ Transplantation in a Muslim Society
she was the mother of three school-age children. She was always clad in a simple shalwar, qameez, and a dupatta (a large scarf used by women to sometimes also cover the head) draped around her shoulders under a white coat; her long black hair was drawn back in a bun, and she had a small diamond stud in her left nostril and small earrings in her ear lobes. She offered an interesting contrast to her Western-garbed, garrulous husband, who worked in a pharmaceutical company and who sometimes dropped by the clinic. Ms. Azra had an uncanny memory for not only the names of donors and recipients dating back to the early years of the program but also intimate details of their personal lives. She often directed me to “interesting” cases and then would compare notes with me. Throughout the days donors, recipients, and family members, primarily women but also men, streamed through her of¤ce (a sparse room with a desk and a couple of chairs, which she generously turned over to me to interview patients) sitting down to tell Madam their woes. These could be personal or related to work and life in general, all ending with requests for advice and help. Ms. Azra was told why a brother had not shown up to donate a kidney, who among the family members had forsaken the patient and why, problems with mothers-in-law, ¤ghts with spouses, inheritance disputes, or the fact that the family was deep in debt and could no longer afford two meals a day or bus fare to come to the next clinic. She listened patiently, commiserated, gave advice on intimate matters as an “elder” in the family is expected to, signed dialysis appointment slips, found money for bus fare, and distributed to the most destitute clothes that she had collected through donations. She sympathized at times, scolded and berated and got angry at other times. Such discussions, including those of the most private and personal nature, always occurred with the door to her of¤ce wide open and were never interrupted when people walked in to use the phone in the room or use the adjoining bathroom. At times when other female members of the staff passed through her of¤ce, they would chip in with their own advice if they were familiar with a patient or family member. Concepts of privacy and con¤dentiality that I was accustomed to in my practice in the United States never seemed to be issues for any
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of those involved in these discussions. As subsequent chapters show, this pattern was similar to the interactions I would observe in all clinics. I was often left with a sense that I was swimming in a sea of communal suffering in which everybody was a®oat; it was everybody’s business. Over time I got used to sitting in the of¤ce scribbling my notes while attempting, often unsuccessfully, not to be drawn into the troubleshooting sessions. (“What do you think, Dr. Moazam? I think she should just divorce this man. He has done nothing for her. What kind of a husband is this?”) Ms. Azra grew up in a traditional “joint family” system, the term used for an extended family in which members of several generations often live under one roof, a not uncommon arrangement in Pakistan. During her childhood, her paternal grandmother, paternal uncles and their wives and children, and two paternal aunts (until they married and moved away) lived together in one house. Ms. Azra was the oldest child, with four younger sisters (two of whom are now physicians) and one brother. Due to her mother’s illness, she effectively took on the “maternal” role for her siblings at a young age. When she married, it was to an only son, and therefore, in her words, her role in both her families of origin and marriage was always that of a baree (an Urdu term with the literal meaning of “big” or “older,” but it is also used for someone who shoulders responsibilities, holds authority). She would tell me with a laugh, “I tell Sir that mujhey dantney kee aadut hey [I now have a habit of scolding others]. Everywhere I am baree. Sometimes I wish that I was chotee [diametrically opposite in meaning to baree].” She spoke of many con®icts between her mother and her father’s side of the family and the resulting tensions and stresses that this created for her mother. When I was in Inter [class 12] I don’t know what happened, but my mother began to believe that somebody had done jadoo [black magic] on her, and she began to recite wazeefey [verses from the Qur’an] all the time. I used to notice that right from the beginning my daadi [paternal grandmother] used to tell Ammi [Urdu term for mother] that she [the mother] is Urdu-speaking [a speci¤c ethnic group]. Her other daughters-in-law [sisters-in-law] were Punjabi.
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And there used to be many “clashes.” My own feeling is that maybe my Ammi used to think of this. I used to take her to the doctor, I felt she was ill. . . . When I would speak to my phupis and chachas [paternal aunts and uncles] about her illness, they would pay no attention. Then one day . . . I heard my daadi and phupis and my Abba [father] talking, and they were saying in Punjabi, “you have so many daughters, how will you manage? Doosri shaadi kar ley [you should take a second wife].” And I thought, I will not let this happen. I am the oldest; I will take care of them [her siblings]. . . . after this I took over the role of Ammi, taking care of my sisters.
Ms. Azra was close to both her parents (who now lived with their married son) but believed that her mother had in®uenced her most in life. She told me that there was one habit of her father’s that she had disliked. As was the case with many men, she felt, he would not take a stand against his parents in support of his wife. She said, “If Ammi complained that they said this to me, Abba would listen, and then when his mother said anything, he would agree with her.” She told me with a laugh that her father was a very nice man and “not a khofnak [ferocious, scary] Abba who insists that you must do this,” but that he was also a very famabardar (obedient, dutiful) son. She related how eventually one of her phupis wanted her to marry one of her [the aunt’s] sons. She turned down her aunt, saying, “it will be very strange for me to become your daughter-in-law—you used to taunt my Ammi and she would cry.” She told me that her mother now looked after her children while she was at work in the Institute. She believed that it was only because she had taken care of her mother during her illness and was never rude to her that God has rewarded her. (Respect for parents is one of the injunctions of the Qur’an most frequently quoted by Muslims.) “I have seen that Allah has helped me always in whatever I do. This is why I believe that I have never faced any problems in my life.” Ms. Azra had not really wanted to get married but eventually succumbed in 1987 to the pressure of her khala (maternal aunt) and her husband-to-be (who had come to know Ms. Azra during his visits to the clinics as a medical representative) and his family. “I had thought that I will not get married, bilkul nahin [absolutely not]. . . .
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I felt that if I got married who would look after the young ones [her younger sisters]. And who knows what kind of a man he is, and what will the in-laws be like.” She said that she ¤nally decided to get married only because it was the rawaj (custom, tradition) in society that one had to follow. I asked Ms. Azra how she came to join the Institute. She told me that after graduating from the university she ¤rst joined the casualty (emergency) department of the main hospital. Her primary responsibility was to meet and interview indigent patients who could not afford to buy medications, and to arrange necessary medicines for them through the welfare funds. I worked for a year there and saw that nobody did any work there. The doctors did a little bit of work and then guppain lagatey [they gossiped, talked trivia]. They liked to talk to single women. I was not married then, but I never had a habit to do that. I never had time to gossip. My director at the time developed kidney pain and went to see Sir. I had not met him yet. I had told her . . . I am very bored here, there is no work to be done . . . so she took me with her to see Sir and told him I wanted a job in the ward. You keep her, she said to Sir. And he said he had great need but that I had to arrive in his ward by 8:30 a.m., otherwise he would not give me a job. Come from tomorrow, Sir said to me. Next day when I got there . . . he was standing at the counter. He looked at the clock, and it was just 8:30. And from that day to now I have been here.
She was given the responsibility by Dr. Ahmed of speaking to the dialysis and transplant patients and their families (“only three or four transplants had been done by the time I joined”) and to determine if they had any problems following surgery or if there had been any dif¤culties in getting a family member to donate. In her opinion, “whatever training I have, it was done by Sir.” She said that her responsibilities were gradually expanded. First I only worked with transplant patients, and I would report to Sir—this or that had happened, this is what we should do, we should get him this job, these are his family problems, etc. I would talk to the families. Then Sir asked me to deal with the dialysis patients and
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their families and collect data. I would attend the OPD [outpatient department/clinics]. . . . Because I was not married I stayed here till very late. Then zakat [mandatory wealth tax imposed in Islam on all Sunni Muslims] began to be given to the Institute, and I became involved in that [the distribution].
During one of our discussions when I remarked on her in®uential position in the Institute, Ms. Azra said without arti¤ce, “All this is through my training by Sir. All this that you see now, is all because of Sir.” I teased her once that I had noticed that even though she was baree everywhere else, she became chotee in front of Sir. She laughed and agreed, “He is the only human being in front of whom I am like that. Other than him I dant [scold, chide] everybody including Abba when he doesn’t take his medicine. But I don’t scold without reason. I feel that I have to take care of him so mein dant daitee hun [I scold him].”34 Many of the experiences in Ms. Azra’s personal life not only shaped her worldview about interpersonal relationships within a family but also colored her interactions with patients and their families. With her years of conditioning as the caretaker of her family, her utilization of the dant was frequently at play with patients in her role as a baree even when the addressee was older than her by several years. For Ms. Azra this was an expression of her concern for them, and most patients seemed to see it in this light. Once patients came to know me they would sometimes report to me with a smile that “Madam ney bohat danta aaj [scolded, berated me severely today].” For patients, products of a hierarchical culture, the scolding was taken in stride as an expression of caring by an “elder” who had their interest at heart. I was then told the reasons for the dant, frequently with a request (perhaps seeing me as an even older “elder”) to speak to her and plead their case. Having played a maternal role for four younger sisters and indeed even her own mother, Ms. Azra naturally assumed a similar role, a relentlessly protective stance toward women she saw in the clinics. This was particularly so if it happened to be a young, unmarried woman who was brought in by the family as a donor. I believe that her disappointment at her father’s failure in “protecting” her
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uncomplaining mother was behind her belief that many women often remain silent, unable to or not allowed to speak, when it came to their own interest, and that despite men’s status within the family, they could not be relied on. Women therefore needed somebody in authority, a baree, to serve as their advocate. And just as Ms. Azra had assumed this role in her own family, she did the same in her professional dealings with families and patients. Her understanding of Pakistani women and gender dynamics within families was by no means simplistic. When I interviewed her she had also told me of her conviction that it was frequently the women rather than men on her father’s side of the family who were the chief instigators of her mother’s abuse and suffering, perhaps even the indirect cause of her illness. In this process she perceived the male, her father, as relatively powerless, a passive agent in the events that were controlled by women. This belief was taken into account when she dealt with families. One of the remarks I often heard from her was that in “70 percent of the cases” it was the chalak (clever, cunning) females in the family who were responsible for thwarting the staff ’s attempts to ¤nd a male donor. In the eyes of this traditional Pakistani woman, men were often directly responsible for the oppression of women. But paradoxically, she also saw many men as no more than relatively minor actors, merely pawns in the hands of women, at least within the family drama. I was to discover through my own observations and interviews of patients and their families that this belief of hers had a ring of truth to it. I too came across instances (some of which are recorded in the following chapters) in which men were merely instruments wielded by the hands of shrewd women to serve their own purposes. Unquestionably, Dr. Ahmed had had a major in®uence on Ms. Azra’s professional life. She had been among those who were “¤rst on the scene,” and she had grown professionally as the transplant program itself matured. She felt that she had been molded by “Sir” to be what she was today, some eighteen years after starting at the Institute, but my observations also suggest that she in turn had in®uenced his views, and those of the healthcare professionals, particularly in the evolution of an ethos of protecting vulnerable women.
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She had the closest contacts with families and was often aware of intra-familial dynamics that were not known to many of her medical colleagues. They often relied on the information that she gleaned through what was laughingly dubbed as Madam’s style of “interrogation, not interview,” of families. One of her primary concerns, shared by some but not all the physicians with whom I spoke, was a conviction that single women who donated kidneys failed to get marriage proposals and had dif¤culties in getting married, and that this was not a problem for unmarried male donors. Ms. Azra related to me several cases she had encountered in the early days of the program that had ¤rst alerted her to this problem. This included the story of a good-looking young woman whose parents had approached the staff a few years after her kidney donation to her brother, very distressed that nobody was willing to marry their daughter. This too constituted what I came to see as “paradigm” cases that in®uenced staff behavior and attitudes. This same case was also related to me on separate occasions by Dr. Ahmed and Dr. Khalid, who shared Ms. Azra’s concern about submitting single women to donor nephrectomies. What I found remarkable in the light of the androcentric nature of many medical institutions was Ms. Azra’s unquestioned authority and the respect she was accorded despite two obvious strikes against her—she was a woman, and she was not a physician. I believe that to some extent this was related to the regard in which Dr. Ahmed was seen to hold her. In my conversations with him he con¤rmed his trust in what she reported to him about patients and families and was frequently in touch with her during the day, in person or by phone. He told me, “She is very honest. She is a great asset. There is one thing about her—she will never lie.” Ms. Azra was among those who were “close to the king” professionally, and this was not lost on the staff. Dr. Fatima, the Female Nephrologist
Dr. Fatima was away for Hajj (Muslim pilgrimage to Mecca) when I ¤rst arrived in the Institute, and during my subsequent interview with her she described herself as “religious.” Barely ¤ve feet tall, she was a thin, solemn woman in her early forties, her face un-
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adorned and free of all jewelry. She always dressed in sober native clothes under a white coat and had a hijab (head scarf ) covering her hair at all times. She was married to her ¤rst cousin, also a physician, who worked as a pathologist in the Institute. Dr. Fatima was the third child in her family, with an older brother and sister who were also physicians and three younger sisters. All her sisters except one were married but continued working in their professions. Dr. Fatima’s father was a Hakim (a physician who practices the Unani form of medicine) and also a sha’er (poet), and her mother was a housewife. Both were deceased. Following her graduation from medical school in 1985, Dr. Fatima worked for about six months in Iran to study ¤rsthand, as she said, the in®uence of the Islamic Revolution, an unusual step for a single Pakistani woman to undertake. She joined the Institute in 1989 and obtained her basic nephrology training in the institution. She had also spent a year as nephrology fellow in a transplantation unit in the UK arranged by Dr. Ahmed. Her narrative describing events that led to her joining the Institute provided an interesting glimpse into the functioning of a hierarchical society and a medical system in which the authority of senior physicians and “professors” was seldom challenged in professional and personal lives of younger colleagues. Dr. Fatima said that following her return from Iran and while working as a physician in a small government hospital in Sindh, she consulted Dr. Ahmed for recurrent pain in her lower back. The ¤rst time when I came here Ahmed sahib saw me in the OPD. He wrote out some investigations for me and called me after two days. He said, I will be in the theater [operating room], see me there. So when I got to the waiting room of the theater I met Dr. Khalid [this was the ¤rst time they had met] and he said to me, why don’t you come here [work in the Institute]. And I thought why is this man asking me this question so I answered him rudely that I can’t do that. My job and my home are over there [in Sindh]. So he said nothing more and left. Then Ahmed sahib came out, and while writing a prescription for me he asked what kind of work I had done so far. I told him about the job in 1 and then in Iran. Perhaps when he heard about my going to Iran as a single woman, he thought that I was not the “usual” kind of girl. So he suddenly picked up the paper
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that he was writing on and tore it up. [She laughed.] I still have that torn piece of paper. Then Ahmed sahib said to me, you should work here. My friend, who was with me, dug me in the side with her elbow that I will have a chance to work with Ahmed sahib [considered a leading clinician in Pakistan]. I became worried that I had this other job and here is this man asking me to come here. I thought that here is this white-haired man saying this, [and] I can’t say anything rude like I had to the other man. [Dr. Khalid is younger than Dr. Ahmed.]
I asked what happened next. I told him politely, not like I had to Khalid sahib that I already had a government job. And Ahmed sahib said, just go and see Mr. 1 [the health secretary] in the Sindh Secretariat. . . . .when I got there, . . . he said that Ahmed sahib had called, and where is your application? I did not have one, so I sat there in front of him and wrote one. . . . And he signed it, and I was transferred to the Institute. . . . That was 1989, and I have been here since then.
Dr. Fatima’s narrative illustrated aspects of expected modes of interactions between men and women, the young and the old, in Pakistan. Her indignation and rudeness to Dr. Khalid when he suggested that she join the Institute (an unknown young man approaching a young women was seen with suspicion and was not to be encouraged) contrasted with her response to Dr. Ahmed (one cannot be rude to an older person, a man with white hair, a professor) when he made the same offer to her. His dramatic gesture of tearing up her prescription while offering her a job seemed to have produced a sense of grati¤cation rather than indignation (perhaps taken as a compliment that a well-known professor considered her good enough to work for him, that he knew what was best for her). Also intriguing, and re®ecting his authority, was how one phone call from Dr. Ahmed to the health secretary bypassed the frequently convoluted bureaucratic process involved in the transfer of government employees from one institution to another. In answer to my question, Dr. Fatima responded that although her father had in®uenced her in many ways, “in most areas it was my mother.” Asked to elaborate, she commented:
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I never feel that I should have a better car, a better house, or earn more. I took this trait from my father. Everyday he used to judge that OK, I have now earned enough to take care of my daily needs, that my children will have enough to eat. . . . There were a lot of us to feed—not merely us brothers and sisters but also others. . . . Often the children of my father’s friends and our cousins would stay in our house [at her father’s invitation]. My Ammi would cook for all of us. We did not have any servants. She used to wash all our clothes. . . . We all studied in government schools, and we were kind of outstanding because Ammi would work hard at tutoring us at home. [The mother had completed high school herself.] . . . Although my mother stayed at home . . . but now I think that this trait that we [Dr. Fatima and her siblings] possess is quanat [a Muslim virtue of being satis¤ed with what one has] . . . we got this from Ammi. . . . Every time a daughter was born [to relatives] there was a majlis [communal mourning] in their house. . . . One day somebody asked my Ammi that when your daughters were born, did you not feel sorrow, and she said no. . . . She never differentiated between our brother and us.
I asked Dr. Fatima about how marriages took place in her family. Was her marriage and those of her siblings arranged by the family? They were all arranged, even mine. Except that mine is within the family, to my khala’s son [maternal aunt’s son]. My mother arranged the marriages of my older brother and sister while she was alive. [She died in 1993; Dr. Fatima was married in 1995.] When [my mother] had told me this earlier [to get married], I had said no. I was not in favor of marriage. [I asked why.] I don’t know. . . . I was not in the mood, never considered the need, and did not consider it a necessity. My mind, my attention was toward my profession, toward religion— to understand it better, perhaps learn Arabic. . . . All these things have been pushed back now. It is dif¤cult to do this in married life.
In that case, what had made her decide to get married, I asked. When I would say no to my mother, she would say you live alone in the hostel, you have stayed away from home so long. She would say, I am worried about you. Then in the end she became very ill. . . . Around that time her insistence [that I should marry] increased.
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Once I tried to make her understand that this would not be a suitable marriage. She asked what is the problem with him [the cousin]. I said . . . as a human being he is a perfect man, but it may not be right for me. I said that he is working in a junior position to me [in the Institute]. . . . Mentally he will not be able to accept me, I know. She was ¤nally convinced . . . and said all right, whatever is your decision. But then he [the cousin] went to see her again . . . so she asked me again. So ¤nally I said all right. And then Ahmed sahib also spoke to me several times about it, saying that I should marry him. . . . And after my marriage they shifted 1 [her husband] to the laboratory [to prevent con®icts as she held a more senior position].
Dr. Fatima, although also “traditional” in some ways, nevertheless differed in signi¤cant ways from the equally assertive Ms. Azra. She was raised in a nuclear, more “progressive” family, although, in her words, her “very social father” frequently invited children of family and friends to move in for extended periods of time, greatly increasing the workload of an apparently patient, unprotesting mother. Her parents appeared to have encouraged independence in their daughters as evidenced by the life Dr. Fatima had led. Living in a hostel away from home, spending six months in Iran as a single woman, and later undertaking a nephrology fellowship in the UK unaccompanied by her husband are all unusual actions for a Pakistani woman. In contrast to Ms. Azra, Dr. Fatima had also traveled outside Pakistan, including to the United States to attend medical conferences. In my conversations with her I felt that some of her views on gender relationships particularly within marriage could be seen as more “modern” than those of her colleague. Dr. Fatima also championed women, but unlike Ms. Azra she focused primarily on married women who she believed were often coerced into donating a kidney by their husband and in-laws. This was combined with her profound and openly verbalized disapproval of husbands who she sensed were unwilling to donate a kidney to their wife. Whereas Ms. Azra believed that women were at risk for remaining unmarried following a donor nephrectomy, Dr. Fatima questioned not only this belief but also the centrality of marriage in the lives of women. In her opinion marriage can, in fact, hinder a woman’s progress and growth in important ways.
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To Dr. Fatima, even if women could not get married, “they can always work.” This re®ected her own economic independence as a physician who made an adequate salary, equal to if not more than her husband’s income. In contrast, government salaries being as low as they are for “non-medical” staff in Pakistan, Ms. Azra’s husband, who worked in the private sector, was almost certainly the primary breadwinner for her family. Consequently whereas Dr. Fatima appeared to de-emphasize the centrality of the male as breadwinner, Ms. Azra uniformly stressed this role for men in her contact with patients. Both women did get married but seemingly for different reasons. For Dr. Fatima, her marriage represented complying with the wishes and concerns of a seriously ill mother; for Ms. Azra, marriage remained a cultural necessity for women, a rawaj that could not be ®outed. Nevertheless, both shared a conviction that fewer options were available to women in their lives, and that they were frequently powerless to control what happened to them. And with Ms. Azra championing single women and Dr. Fatima rising to the defense of married women, they had the bases well covered. In the case of Dr. Fatima, the direct and active role of Dr. Ahmed in persuading her to get married and her uncritical, matter-of-fact relating of this to me, despite her otherwise independent stance in life, re®ected social norms. His insistence on several occasions that she should get married, I felt, was not construed by her as inappropriate meddling by a professional colleague in a personal matter but rather was interpreted as the concerned involvement of an older individual, perhaps someone seen akin to a father, who knew what was in her best interest. Moreover, when Dr. Fatima did get married she saw the decision of Dr. Ahmed (in which apparently Dr. Khalid also was instrumental) to transfer her physician husband to a non-clinical area to prevent con®icts as the thoughtful action of a caring elder. (I did not get an opportunity to speak with her husband to assess what he had thought of his career shift and the reasons behind it.) My ¤eldwork was to repeatedly reveal such instances of blurring of boundaries between the personal and the professional in the interactions among the staff and healthcare professionals, as also between staff and patients and their families. Many interactions were
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perceived within a template of relationships and connections rather than as models of independent intercourse between autonomous individuals. A language of kinship terms and the metaphor “we are like family” were frequently employed in the Institute to de¤ne and characterize dealings with one another.
2 Webs of Relationships and Obligations Man is an animal suspended in webs of signi¤cance he himself has spun, I take culture to be those webs. Clifford Geertz, The Interpretation of Cultures
Pakistan came into existence as an independent country only in 1947, but its people share long-standing cultural traditions and religious beliefs (more than 95 percent of the population is Muslim) that remain central to a construal of the “self ” and also in®uence how individuals position themselves in the world and relate to each other. To paraphrase Charles Taylor, it is these indigenous values that continue to orient many Pakistanis in their “moral space,” help them determine who they are, decide what is important and what is trivial, and formulate views about what constitutes good or bad in life.1 This is not to suggest that Pakistan presents a homogenous, monolithic culture, for cultures are complex and dynamic, not simple and stationary. Nevertheless, Pakistanis share certain values and beliefs that cut across ethnic divides, gender, and social strata, and some of which are characteristic of “collectivistic” cultures. Many indigenous norms can be seen as non-Western in orientation and differ in signi¤cant ways from some of those that characterize “individualistic” societies such as the United States. One of the de¤ning values of modern, individualistic societies is a belief that the rational individual forms the basic unit of society in the economic, political, legal, religious, and ethical realms. Although some argue that roots of individualism were present in early JudeoChristian thought, the birth of individualism as an ideology is gen-
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erally traced to the European Renaissance and changes triggered by the sixteenth-century Reformation movement, during which the authority of the Christian Church was challenged. In the words of Louis Dumont, there was an “internalizing of morality” so that it was now to be found “within one’s conscience.” This “new value” attached to the human individual ushered in a modern concept of a generic, rational man existing as an autonomous being prior to groups or relationships, a product of nature and not history. In this view, according to Dumont, modern society is seen as composed of a combination of such autonomous individuals brought together in contractual relationships. This is a departure from the belief that society precedes the individual, and that culture is integral to and not merely superimposed on a form of universal human nature.2 The ideology of individualism is inherently inimical to traditional hierarchical systems and relationships based on authority that are still the norm in societies such as Pakistan. Core values of individualistic societies include a belief in the autonomy and self-governance of rational agents, importance of individual liberty and privacy, freedom from interferences, and a right to make choices free from external in®uences. An individual’s autonomy is de¤ned as a “selfdetermined deciding and choosing.” Human ®ourishing occurs best when an individual is “free from whatever might interfere with his doing what he wants or might want to do.” In a worldview rooted in egalitarianism that attaches a predominant value to the human individual, relationships may be subordinated to ensure that individual subjects are “equal” and autonomous and free to make their own choices.3 The British sociologist Steven Lukes traces the transfer and subsequent profound in®uence of Anglo-European philosophical and social thought into the “Protestant” New World. In his words, by the end of the Civil War individualism had assumed “a catchword of immense ideological signi¤cance” in the United States. Individualism became “a symbol of national identi¤cation” and “a celebration” of liberal democracy and capitalism and extended to incorporate politics, economics, commerce, and law, and eventually ethics and morality. According to Lukes, the seminal American values of equality and liberty rest on the “four unit-ideas of individualism,”
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75
which include respect for human dignity, autonomy, privacy, and self-development. The autonomous agent is one who is not “the instrument or object of another’s will,” and is “left alone by others to think and act as he pleases.” It is in this way that individuals are able to “make the best of themselves.”4 The birth of modern bioethics as a multidisciplinary ¤eld and its offshoot, referred to as clinical or medical ethics, took place in the United States during the late 1960s and the 1970s. It was triggered by novel moral questions that arose with the rapid advancement in medical science and research, and biotechnological innovations.5 Many theologians (Protestant, Catholic, and a few Jewish) and people trained in religious studies were active participants in the early stages of the evolution of bioethics. But in a pluralistic and diverse society, with a constitutional separation of church and state, the discipline soon assumed a predominantly “rational, secular mode of thought” and eventually “shifted over entirely to using a secular language.”6 In a pragmatic search for moral consensus, bioethics turned to rational, philosophically grounded theories and “universal” ethical principles. Also shaping this particular trajectory of bioethics were the distinctive characteristics of American society shaped by Anglo-European thought and traditions, as well as the larger social events that were underway in the 1970s. The latter included, among others, the civil rights and anti-war movements; the rise in feminism; patients’ rights organizations that emphasized individual rights, choices, and equality; and a growing distrust of the authority of powerful healthcare professionals and institutions. With an emphasis on autonomy and equality, anti-paternalism became an important value in the conception of what constituted ethical interactions of physicians toward those who sought medical attention. Respect for patients’ autonomy and their right to make decisions became one of the central tenets of bioethics. Exactly how autonomy is to be comprehended and balanced against the older, more traditional principles of professional obligations such as bene¤cence, non-male¤cence, and justice remains a source of ongoing debate.7 The juxtaposition of the values of Pakistani society, and how
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these inform physician-patient interactions and relationships, with the standards of individualistic societies provides interesting contrasts. Pakistan has long-standing cultural and religious norms that have a distinctive historical and social construct. Many of these differ in signi¤cant ways from those norms that characterize societies in which respect for autonomy and rights of individuals are primary values. Pakistan is a country in which most people still spend their lives within strong hierarchical, interdependent systems that de¤ne both personal and professional domains. The society represents a traditional and collectivistic culture similar to many others in Asia, one that encourages interdependencies and harmony rather than autonomy and freedom of choice. There is an emphasis on obligations to each other within relationships rather than a focus on the importance of individuals as self-governing, autonomous agents.8 Furthermore, it is accepted that in mortal life individuals are not created “equal” when it comes to power, privilege, wealth, and even wisdom. Therefore those blessed with more in life are morally, but also religiously, bound to shoulder a larger share of responsibilities toward the less fortunate. This chapter reviews some of the salient characteristics of the extended family system in Pakistani society and the speci¤c kinship terminology that de¤nes, strengthens, and extends relationships beyond the immediate family unit. I analyze what I came to recognize as a kind of “relational” morality that is grounded in cultural and religious values, and in which obligations and responsibilities of the family to their kin and healthcare professionals to their patients take center stage. I explore how the hierarchical “Pakistani” family paradigm is transplanted into the Institute and colors all interactions and relationships among staff and physicians. In the rest of the chapter, using interviews and observations, I analyze the indigenous, particularized moral code which de¤nes and guides healthcare professionals in their interactions with patients and families they encounter. This chapter focuses primarily on the perspectives of the healthcare professionals of the Institute in their interactions with each other and their dealings with those who seek their care in the clinics.
Webs of Relationships and Obligations
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The Family: Center of Existence
In the life of most Pakistanis, the family is positioned at the center of daily existence. Although primarily due to socioeconomic reasons, adult children are beginning to move away (often from rural to urban areas), many people still live together as extended, “joint” families, often with three or more generations living under one roof or in close geographical proximity. It is not unusual for sons to continue to live with their parents following marriage, leading to strong vertical and horizontal intergenerational ties. Married daughters usually reside with the family of their husband, but ties with their family of origin remain strong. During pregnancies and deliveries and in the case of major illness, parents will often take on much of the care and emotional support of the married daughter. Family obligations and harmonious living are considered moral imperatives, with personal identity generally taking second place to the collective family identity and consciousness. Western discourse that revolves around the rights of an individual member within the family unit, issues of rights between children and their parents, or debates on “rediscovering” the role of the family in decision making during illness are alien notions to most Pakistanis.9 When ill, the patient almost never goes to see the physician alone; he or she is taken by family members to see the doctor. In this collectivistic culture the process of medical decision making is thus not considered a private matter between a patient and her physician but an event that is family centered and in which the physician is expected to assume an active, directive role.10 In societies such as Pakistan, as Arthur Kleinman notes, the individual is viewed as “sociocentrically enmeshed in inextricable social bonds, ties that make interpersonal processes the source of vital decisions.”11 In Islam, obligations to kin and the Muslim community are considered moral injunctions from God. These are traced to speci¤c verses in the Qur’an and a well-known and much quoted Sunna (sayings, actions, tradition) of the Prophet in which he is reported to have said that the best beloved of God is one who loves his family
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the most.12 Although Muslim scholars have historically delineated rights of God (haquq Allah) and the rights of humans (haquq al ibad ), the word haquq (rights) is, unlike its “secular” concept, multivalent and nuanced. It also means duties, claims, and obligations, depending on the context in which it is used. In the view of some it is only by ful¤lling certain obligations to God and society that humans can gain certain rights and privileges, and moreover, duties must take priority over rights.13 The anthropologist Lawrence Rosen, in his analysis of the Islamic concept of justice, notes that the vision of the Qur’an and the Prophet gives “unusual stress to the role of the socially constructed person as the locus of moral and religious responsibility.” The Arabic root adl (also used within the Urdu language), from which is derived the word for justice, literally means to be “balanced” or to be “set straight” and is closely related to the concept of an “interconnected sense of obligations by which God and man and man and man are linked.”14 Within cultures such as Pakistan in which the extended family is seen as the irreducible unit of social life, the language is one of context and relationships rather than one of rights and entitlements. For many Pakistanis therefore, to be a moral person involves following religiously grounded values of social interconnectedness and obligations especially toward kin. The family structure is hierarchical in nature, and relationships and responsibilities are well de¤ned and related to gender and age. Wisdom in particular is believed to be an aspect of age; older members are deferred to, and their advice is actively sought and respected in all matters pertaining to life. Openly disagreeing with the opinion of an “elder” of the family is considered disrespectful; the appropriate response is believed to be silence or moving away to avoid disharmony. Although families are patriarchal and frequently patrilocal, the matriarch of the extended family is awarded extraordinary respect within the family structure. The mother-child relationship is idealized as superior to all others. This belief too can be traced to a much quoted saying of the Prophet that janat (paradise) lies under the feet of the mother. The Arabic root rhm (with its counterpart in Urdu) signi¤es mercy and compassion; from this root is derived the
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word for the womb, terms for kinship and relationship, as well as one of the attributes of God. The concept of khandan (family) extends beyond the nuclear family of parents and their offspring to include others related by khoon (blood) or through marriage. Families often af¤rm and strengthen their bonds through marriage between ¤rst cousins, unions that are permissible in Islam and thus legal in the country. Marriages of most children are generally “arranged” by parents and elders, who emphasize the qualities and strengths of the chosen family more than the traits of the individuals who are to be betrothed. In the marriage union, whether between cousins or to outsiders, the stress is thus on the bonding of two families rather than merely the coming together of a young woman and man. Marriage of adult offspring, particularly daughters, is seen as an important responsibility—in fact, an obligation of parents. Kinship terminology within the extended family is speci¤c, with terms that de¤ne exact relationships through the paternal or maternal side of the family. There is no equivalent of generic English words such as cousins, aunts, uncles, or grandparents in the Urdu language. As an example, khala signi¤es the mother’s sister, whereas phupi is used to address the father’s sister. In joint families with several children growing up in the same household, speci¤c terms qualify relationships between them as either khalazad behan (sisterthrough-the-khala), phupizad bhai (brother-through-the-phupi), chachazad behan (sister-through-the-chacha, i.e., paternal uncle) or mamoozad bhai (brother-through-the-mamoo, i.e., maternal uncle). But cousins will often refer to each other merely as my behan (sister) or bhai (brother), emphasizing the closeness of their relationships to each other.15 This system of kinship terminology serves to symbolically reinforce bonds based on blood ties and expands them well beyond the nuclear family. The family paradigm of relationships is extended beyond blood relationships to close friends, who may be referred to as behan or bhai. A close friend of the mother will be addressed as khala and a friend of the father as chacha by children of the family. (Culturally acceptable friendships among adults are almost always between
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members of the same sex.) Along the same lines, physicians and trusted healthcare professionals are often metaphorically “adopted” into the family unit as “elders” and referred to as being akin to a maa (mother), baap (father), or an older sibling. This particular aspect of the culture has been recently analyzed by Pakistani psychologists. An American-trained clinical psychologist now practicing in Karachi, Riffat M. Zaman, explains this phenomenon as being related to a cultural pattern in which one con¤des in and trusts family members rather than strangers. In her opinion, Pakistani patients feel more comfortable seeking therapy from someone they can perceive as a family member, particularly one seen as an authority ¤gure, such as a parent or an older sibling. Furthermore, in this hierarchical society the expectation of patients and families is often that the advice provided by the therapist will be directive rather than facilitative in nature.16 Zaman’s analysis is supported by my own clinical practice as a surgeon at a university in Pakistan. I was often referred to as being like an older behan or a maa, even by patients and family members who were considerably older than I was. The question frequently posed to me by a family was not, as was the case in my clinical practice in the United States, “Doctor, what would you do if you were in my place?” but rather, “Doctor, what do you think I should do?” It was expected, and accepted, by many that I would take an active role in advising the family about which therapy or action constituted the best interest of the patient. Physicians in Pakistan are held in high esteem, similar to that in other Asian societies such as Japan, due to their knowledge and esteem,17 but augmented due to the authority and the historically privileged position accorded to them in Islam. One of the titles used for healers is Hakeem, an Arabic word that means one who has knowledge and wisdom and that is also one of the names attributed to God. In Islam, the physician is described as the instrument of God’s mercy on earth, and the practice of medicine is seen as an act of worship. Al-Ruhavi, a famous physician of the ninth century, states that a physician “imitates the acts of God as much as he can.”18 That something of a similar nature is believed by people in Pakistan was illustrated to me during my own practice. I was sometimes told
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by patients that just as they had faith in God “up there” to look after them, “down here” (on earth) it was in me as a physician that they placed their trust. During my research in the Institute I saw this reverence for physicians with religious undertones demonstrated repeatedly in the interactions of patients and families with professional staff. They were seen as benevolent ¤gures of authority, skilled and wise, who worked sel®essly for the good of patients. Healthcare professionals were often equated with farishtas (angels), and one patient informed me, “is dunya mey farishtey sirf yahan dekhey hein [in this world, I have seen angels only in this place].” At the end of my conversation with a woman who had undergone a successful transplant in the Institute, she said, “jis tarah doctor mareezon ko zindagee daitey hein, usee tarah Khuda un ko zindagee dey [just as doctors give life to their patients, I pray that Khuda, or God, gives these doctors a long life].” Another patient, a young man, spoke of the staff in superlative terms, with special praise reserved for Dr. Ahmed. He said that he prayed that God would increase the length of Sir’s life, adding that even if this meant “humaree zindagee chotee ho jaey [my own life is shortened].” In Pakistan, although physicians are occasionally criticized by the lay press, by the government, and sometimes by physicians themselves for instances of ill-treatment of patients, they are far more likely to be idealized as members of a sublime profession working for the welfare of the citizenry. I found this to be particularly true of the Institute and its staff. This perception offers interesting contrasts to an emerging “Western” model of medical practice in which patient-physician relationships are de¤ned in contractual terms, with healthcare professionals (and now progressively health “systems”) providing service to patients who are referred to as clients. The Institute: A Family Template
The Institute employed a frame of scienti¤c rationality in its goal of providing state-of-the-art management of end-stage renal disease, but its tapestry was vitalized and colored by traditional values and customary practices of Pakistan, and the meanings these were given by the protagonists in the institution. A culturally woven web
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of interpersonal relationships, whether by blood or by “adoption,” and strands of gender- and age-speci¤c duties and responsibilities enmeshed most signi¤cant interactions that took place between patients, their family members, and the staff and healthcare professionals. Within an extended family paradigm that encompassed physicians and the people whom they took care of, it was a relational morality that held sway: a sense of right and wrong grounded in the pragmatic, empirical belief that people were interdependent beings in life with different levels of power, wisdom, and health. With this went an expectation that the advantaged had a moral obligation to help those less fortunate—for the family, their kin, and for physicians, their patients.19 Many theories of bioethics that have evolved under the in®uence of secular, Anglo-European philosophical thought begin with an abstract concept of the equality of all humans. These theories focus on rational individuals and emphasize their rights and freedom to make choices in life free of internal and external in®uences independent of their will.20 This ethos is perhaps exempli¤ed by the following couplet in William Ernest Henley’s poem “Invictus”: “I am master of my fate; / I am the captain of my soul.” This is in marked contrast to a Pakistani belief in the primacy of interconnectedness and interdependencies in life and a sense of morality, grounded in religion, in which executing obligations to others plays a central role. During my research in Pakistan, I came across a Persian poem by Mohammad Iqbal, “Of the Bond between Individual and Community,” that I felt captured the essence of this alternative way of perceiving the world. Iqbal writes, The link that binds the individual to the society a mercy is; . . . When in the congregation he is lost ’Tis like a drop which, seeking to expand, Becomes an ocean.”21
As my research progressed, it revealed that in many cases the links within extended families provided a closeness that frequently worked to the bene¤t of all members of the unit albeit in varying ways. But
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I was also to ¤nd, as gradually unfolds in this and subsequent chapters, that a hierarchical culture in which obligations to kin are considered paramount has its own signi¤cant blemishes. Families could be tyrannical, presenting a Janus face in which the survival of the unit sometimes took precedence over the interest of its most vulnerable members. The Staff of the Institute: “We Are Like Family”
This section deals with the ways in which the staff, nurses, and physicians of the Institute employ a template of the extended Pakistani family—its hierarchical norms, its sentiments, and its terminology— in their dealings with each other as well as with patients. Women make up more than 50 percent of students enrolled in most medical colleges in Pakistan today. Nursing, on the other hand, is not considered a suitable profession for Muslim females for many reasons that include a traditional disapproval of male/female intimate contact (as would occur in handling the bodies of male patients), a pitifully low salary scale for nurses, and a higher social status of medicine as a career as compared to nursing. Currently, for every nurse in the country there are ¤ve physicians. The Institute too has a relatively small number of nursing staff, relying instead largely on indigenously trained males designated as “ward boys,” orderlies, technicians, and assistants. In the case of female patients, women counterparts of these workers assume this function. Of the handful of nurses on the staff of the Institute, several had worked there for many years. Among them were three women who were present when the transplant service was ¤rst initiated in 1985 and who were described to me by Dr. Ahmed (who repeatedly stressed to me that it was “team effort” that lay at the root of all that had been accomplished) as “goldmines” for the program. As they now either worked night shifts or had been promoted to supervisory positions, a special meeting was arranged for me to meet with them. The three women, all in their mid- to late forties now, met me in my of¤ce one morning. After I had explained the nature of my research and my reasons for wishing to speak with them, each thanked me respectfully for
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taking the time to meet with them, a feature that would characterize my interviews with patients, families, and many staff members. As we conversed, almost entirely in Urdu, each chipped in with memories, comments, and opinions in response to my questions, often turning to one another for corroboration or con¤rmation of what had been said. The oldest, a tall thin woman, told me that although the early days of the transplant program were very dif¤cult for everybody, “accha dour tha [it was a good era].” Shama, the tiniest of the three, proved to be the most vocal in relating their shared impressions of the early days of the program. She said that for the ¤rst two hundred or so transplants they were the only nurses on the health team, hinting that the reasons for this may have been the hard work involved and the fact that “Sir is sakht [very strict], and everybody is afraid of him.” During the ¤rst year or two, the nurses divided all duty shifts among them, took no vacations (“Sir said how can you take a holiday when we are doing this important work”), and managed brief periods of respite by covering for one another. At times this meant that they were on call for twenty-four hours straight. All were unmarried at the time and lived in the nurses’ hostel on the grounds of the hospital. They said that Sir expected them to be with the transplant patients “every minute of the day” in the isolation room in which they were nursed following surgery. They recalled the ¤rst transplant patient, a young man who had traveled all the way from Kashmir in renal failure. “He was dirty, and his condition was so bad that we thought he would die when he ¤rst arrived.” His younger brother who had accompanied him donated a kidney, and the patient did well, but they remembered that the second transplant patient had died. The nurses told me about Dr. Ahmed’s concern that transplanted patients must receive an appropriate diet, and he therefore would not allow any food to be brought in by the family (a common, accepted practice in government hospitals in Pakistan). Sir wanted to make sure that the patients got the right food, not too much potassium. So for the ¤rst ten transplant patients, Sir’s wife herself used to cook nashta aur khana [breakfast and lunch/dinner] for them with her own hands at home and send it to the hospital.
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Then after this as we had no cook at ¤rst [in the ward], we [the nurses] used to cook food for the patients in a small room on the ward. We took turns to cook chicken and other things for them. But Sir gave us the money, and we got the chappatees (bread) from the bazaar.
They described their impressions of those ¤rst dif¤cult days with nostalgia. Shama said, It was like a family, as though we were all behan, bhai [sisters and brothers]. The doctors were very cooperative. Dr. Zia [a senior transplant surgeon] used to pick up the kuchra [garbage] himself and carry it to the gate. We never used to take a holiday, but they [the doctors] hamara khiyal rakhtey thay [used to take care of us]. Once I was very tired. I had been on duty for a long time. Sir saw my face and told me, “you go to sleep, and I will take care of the patient.” So I was sitting in a chair and went to sleep, and then the patient whispered to me and said, “Wake up quickly. Sir is emptying the urine bag himself.” But I told him to let me sleep, that Sir had told me I could sleep.
All three women spoke about how the doctors (including Dr. Ahmed) lived and even slept on the ward when renal transplantation ¤rst began. With pride in their voices they reported, “Sir used to call us exactly at six o’clock in the morning every day and ask about the patients. . . . So we had to have everything [information] ready. . . . Sometimes he would call us even from London if he was there for a meeting.” They were also unanimous in their opinion that patients in those days were very “appreciative” (using the English word). They would say to us, “Bajee [a term of respect used to address an older sister], you do things for us, take care of us, that not even my own father or mother would do for me.” On Eid day [the major postRamadan celebration] we would cook chicken for them, and put mehndi [henna] on the palms [of the female patients], and we would buy them choorian [glass bangles] to wear.
The nurses related to me that when news of the renal transplants (the ¤rst to be conducted in Pakistan) spread beyond the Institute,
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they were approached by journalists who wanted to interview them about the program for the newspapers. When we told Sir about it, he said that we should not give them interviews. He said what we are doing here ghar kee baat hey. Is ko bahir nahin batana chahiyey [this is an internal matter of our home/ family. It should not be discussed with outsiders]. So after that we did not speak to the newspaper people.
These segments of the nurses’ narratives captured the ethos of the Institute and highlighted the ways in which a family paradigm and kinship terms were transplanted into the medical arena. The language and symbolism which Dr. Ahmed chose to dissuade the nurses from providing interviews to the press at an early stage of the transplant program offered a striking example. He was initiating a new procedure against considerable opposition and skepticism on the part of some in the medical profession (as he had told me in my interview with him), and much was at stake. By using the metaphor of ghar kee baat versus bahir (home/family vs. the outside), he astutely justi¤ed and validated his wish against external interviews in one stroke and in a language that was instinctively understood and accepted by the nurses. Dr. Ahmed’s message to the nurses was formulated not in a language that focuses on the privacy of patients as in the West but in a culturally modulated vocabulary that recognizes and accepts cultural boundaries between the inner (which included patients in this case) and outer circles of relationships. This concept of group loyalties is a recognized feature of collectivistic societies. Markus and Kitayama describe the concept of “in-group/out-group” distinction as vital in interdependent cultures in which “in-group” members constitute those with whom “one shares a common fate, such as family members or members of the same lasting social group, such as the work group.”22 The feelings of the nurses toward the program and the physicians with whom they worked and the language in which these feelings were expressed were characteristic of a personal rather than a purely professional relationship. They perceived the staff of the Institute as
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a family unit with Dr. Ahmed as the stern but benevolent father at the apex of the hierarchy, with everybody else in the role of his children, siblings who worked with each other and kept the family intact by carrying out duties assigned to them. The nurses took for granted and accepted the fact that gender, age, and expertise were the basis for determining clearly de¤ned roles, but it was interconnectedness and interdependence among the team members that they recalled fondly and emphasized. When there was a crossover of roles and responsibilities (such as a senior physician taking out the garbage or “Sir” asking one of the nurses to sleep while he took over nursing care), this was seen as a caring gesture of older family members rather than as a matter of rights or equality. Markus and Kitayama in their review of research conducted on interdependent Asian cultures note that the stress on interconnectedness and a “harmonious whole” extends also to the workplace. One study reveals that 80 percent of Japanese, irrespective of sex, age, education, and social class, “prefer a manager with a father like character,” someone who “demands more than of¤cial requirements of the job” but at the same time “extends his care to personal matters.”23 Dr. Ahmed’s role in the Institute and the way he was perceived by staff and healthcare professionals closely follow this pattern, a system in which personal and professional boundaries are not well demarcated, and the professional distance that is the norm in many Western workplaces is replaced by personal reciprocity and mutual obligations that are more characteristic of interactions between family members. The narrative of the nurses also illuminated an aspect of patient and healthcare professional interactions that I had personally experienced during my own clinical practice in Pakistan. As stated earlier, patients also frequently adopted the family paradigm and used kinship terms in their encounters with healthcare personnel. Nurses were often addressed as “sisters” (the English term) by physicians and patients in Pakistan (perhaps a legacy of British colonial rule of the Indian subcontinent). In the Institute, however, nurses often took on the Pakistani identity of an older sister and were addressed by the Urdu title of bajee. In Pakistan the older sister assumes the care and nurture of
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younger siblings in large families. It is the bajee who generally cooks and cleans for the family and applies henna to the hands of younger sisters on festivals and special occasions. One of the nurses also mentioned to me how a woman who wished to donate a kidney to her brother came and told her chup key say (whispered secretly, on the quiet) that her husband was forbidding her to do so. Here too the nurse was being seen by the patient in the role of an older female member of the family of birth, a bajee, with whom such con¤dences can be shared; the nurse in turn unquestioningly assumed the identity of one. This blurring of boundaries between the personal and the professional was further demonstrated by another interesting account provided by Shama during my interview. Her family of origin resided in Punjab, and she said that at one point her father came to Karachi to take her back to her village. My father told Sir that he wanted to take me back to Punjab so that they could arrange my marriage. But Sir told my father that I did not want to go back to Punjab. So my father came to me and asked me if this was true, and I told him that I had not said this. Then Sir told my father that yey aur parhna chahtee hey [she wants to study further] and that he was going to send me for postgraduate studies, and so my father returned to his village. And then I gave up the thought of going back to Punjab. [All three women were sponsored by Dr. Ahmed for postgraduate studies in a local university.]
I detected no indignation or resentment on the part of Shama (who is now married), as she related this episode to me. She appeared grateful that Dr. Ahmed had taken her professional career in his hands, mapping out what he thought was best for her. To her the episode re®ected the not uncommon case of two Pakistani “elders” involved in the planning of what each perceived as being in the best interest of a younger member of the family. It was not Shama using her autonomy to decide what she wished to do with her life; it was the responsibility of older family members that was at play. What was clear was that in this case the patriarch of Shama’s “work family” had trumped the authority of the father of her family of origin,
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undoubtedly a result of a combination of the authority and higher social standing of the physician in the country. The perceptions and the language of the nurses that presented the Institute as a family, with Dr. Ahmed in the role of the patriarch, were echoed by many of their medical colleagues. A young female physician, telling me of her recent illness, added with considerable pride, “Sir would visit me everyday when I was sick. It was just like he was my father.” The social worker Ms. Azra related to me how when she was in labor with her second child in a hospital in town, her gynecologist told her that she needed a Cesarean section. Azra said that she asked her to call Dr. Ahmed. “Then Sir told her to go ahead, so I had the operation.” Several other younger faculty members also narrated instances in which Dr. Ahmed had stepped in to take care of what they described as problems in their personal lives. During a general conversation with physicians (some of who had trained in the UK and the U.S.) and staff in one of the tea breaks in the clinic, I asked how they felt about working in the Institute and whether their experience of the interactions between colleagues was different in any way from the time they had spent in Western institutions. One of the UK-trained nephrologists responded with a smile that “just as at home in Pakistan” there was a hierarchy with “the father and mother at the top,” this was also true of the staff relationships within the Institute. On another occasion, the nephrologist Dr. Badar was discussing with me the emotionally wrenching experience for him when, faced with the voluminous load of patients, he had to consider referring elsewhere a young renal patient for whom no donor had been found despite months of dialysis. With a wry smile he explained how he tried to appease his misgivings about having to do so. “Even a chor [thief ] will try to justify his act. So I now tell myself that this is a transplant unit and not a dialysis unit that we are running. We are here to get kidneys for these patients.” He told me that when such decisions had to be made, he did not involve Dr. Ahmed because “he gets very upset.” I asked Dr. Badar to elaborate. He replied, “What I feel is that when Ahmed sahib has to say no [that we will not dialyze you anymore] . . . he tells me, ‘is my role that of Tara Masih?’ ”
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I asked who Tara Masih was. Tara Masih was the person who hanged Zul¤qar Ali Bhutto [prime minister of Pakistan in the 1970s]. So he [Dr. Ahmed] would say, “Is my role that of Tara Masih, [that] I am going to make the decision that we will not dialyze him, and he is going to die?” And he would get very upset, sometimes for a few weeks, sometimes for a few days. And we would feel it in a change of his behavior. If he is happy with you, all the doctors say that he will call you by your name, Badar or whatever it is. If he is not happy with you or he is upset, then he will call you “doctor sahib.” [He laughed.]
I mentioned to Dr. Badar my impression that Dr. Ahmed was seen by many in the Institute as akin to a father. Did he think this was an accurate assessment on my part? That’s right, that’s right. We always feel we are a family. If there is a problem with us, besides anything that happens here [in the Institute] or if there is a personal problem, if you tell Ahmed sahib the problem, he will go out of his way to solve it. Like when I came here I had problems in getting a telephone connection. He went right up to the chief minister and said, “There is a man here, he has come from England just to come here [to the Institute], and he can’t get a telephone connection.” So that was the ¤rst telephone connection I got from the chief minister himself. [He laughed.] This would never happen there [in the UK]. The UK is completely different. You have a work relationship there, and as soon as you go back home, that is ¤nished. But working here is friendly. Even if any junior [faculty or staff ] has a personal problem, he will go to Ahmed sahib. He [Dr. Ahmed] knows so many people in the city, commissioner police, IG [inspector general] police, or DIG [district inspector general] police, and he will sort out the problem.
I asked Dr. Badar if he thought that his decision to not take certain problems to Dr. Ahmed was in any way representative of a family analogy. Yes, it is like the father and the mother. If the father is very busy, or if there is something bad that happens in the family, the mother will try to sort it out and not tell the father that this bad thing has hap-
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pened. So I feel the same way, that because he [Dr. Ahmed] gets upset, I should not take each and every patient to him for him to say no [to stop dialysis]. I should be dealing with it myself instead of asking him to deal with it.
I inquired if Dr. Ahmed ever got upset when he found out that he had not been consulted in a decision. Dr. Badar responded that this was not so. “I have been working here for nine years, and he has con¤dence in me, and in Azra [the social worker].” I raised with Dr. Ahmed himself the problems faced by his staff in handling the torrent of ESRD patients (as many as ¤fty-¤ve new patients per week) who streamed in daily from all over the country and the struggle of his team in trying to accommodate them in the dialysis program, including how to “choose” who should be accepted and who should be turned away. I asked what he thought of this situation. He agreed that it sometimes seemed like an impossible situation. My team will sometimes come and gherao [lay siege, surround] me. They will say that we have too many patients on dialysis now. So I say, “OK, how many patients do you want to dialyze?” and they will tell me that we should take no more than eight new patients per week. I will say that this is ¤ne with me, but I can’t refuse a patient who needs to go on dialysis. I say, “OK, you decide on the eight patients, choose who you wish to dialyze. You choose whether you will look at gender or age or the number of children they have [in order to decide], because I can’t do that.” I know—my team is right, and I am right. We are both right.
When I asked him if he could think of a solution, true to a surgeon his response was, “I just need to double the number of transplants we are doing every week.” While tracing the history and evolution of medical education in the United States, Ludmerer notes that around the time of World War II “a sense was present that the medical school was a family, with various parts working together for the larger whole”; for the staff and house of¤cers, the medical school and the hospital “literally were the family.” The chairmen and professors wielded enormous power over their younger colleagues, but their impact was “a per-
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sonal one” leading to a strong sense of loyalty and cohesiveness.24 The working relationships among the faculty and staff of the Institute echo the ethos, now lost, that Ludmerer describes as existing within U.S. medical institutions half a century ago. The picture of the “family” of the Institute that emerges from the narratives of the nurses and physicians has features that are particularly Pakistani in nature and parallel the interactions and relationships that exist between members of an extended family. Dr. Badar captures this vividly in his account in which he sees himself in a role akin to that of the “mother” and Dr. Ahmed as the powerful father of the family. In a patriarchal family, it is the father/patriarch who is the major sustainer and ensurer of the survival of the family. The mother generally serves as a buffer and harmonizer within the household, providing care and nurture of its members and the head of the family, and ensures cohesiveness. Loyalty and respect are expected from family members toward both the patriarch and the common goals of the family. The clinical psychologist Zaman offers interesting examples from her own experience with extended families in Pakistan (personal communication). She notes that in certain families the patriarch acquires the reputation of being someone who will never turn away anyone who approaches him for help. If someone in the family loses a job or if members of the extended family move into town, they know they can turn to him for help. The patriarch is always happy to set an extra plate at his table and invite people to take a meal with the family. In such cases, it is the wife and other women in the family who will prepare the meal and feed the extra mouths with the provisions available to them in the house. Additional burden though this may be for the females of the household, and despite grumblings and complaints, they are nevertheless invested in the collective reputation of the family unit. They too will take pride in the praise and recognition that ensues for the largesse of the family unit even as they grumble about the additional responsibilities they must shoulder. In many ways this is analogous to the situation that prevails in the Institute, which has acquired a reputation as a haven for all those who suffer from chronic renal disease. Dr. Ahmed’s reputation for integrity and sel®essness and the in-
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stitution’s mission that nobody in need will be turned away from its doors envelop physicians and staff of the Institute who, despite the stresses of a seemingly impossible task, nevertheless frequently expressed to me their tremendous pride in being part of the endeavor. This is not to say that they are unaware of this double-edged sword that often leaves them working in the trenches to do the best that they can with available resources. They are aware that to Dr. Ahmed resource limitations are peripheral issues, irritants that can be overcome through sheer human resolve and commitment. Their respect and loyalty for him carries them along—the patriarch and his mission cannot be denied. Professional Code of Moral Obligations: The Patient as “Victim”
While discussing what are considered “desired” traits in healthcare professionals, Howard Brody, an American physician, notes that the “stock item” in the training of physicians is the advice “Be compassionate and empathic but don’t get too involved.” The Board of Internal Medicine in the United States, in de¤ning humanistic qualities of physicians, quali¤es compassion by adding that it should be “without invoking excessive emotional involvement that could undermine professional responsibility for the patient.” This “therapeutic distance” has come to be seen as an integral part of professionalism in medicine.25 Medical sociologist Renee Fox, in her analysis of various “coping mechanisms” shared by medical professionals, describes a similar process which she terms “detached concern.” In her opinion, pushing emotionally upsetting aspects of their work “just below the surface of their consciousness” together with “an intellectual engrossment” enables them to cope with the stresses and inherent uncertainties of the practice of medicine.26 In his collection of essays on ethics and medicine, Alfred Tauber, physician and philosopher, writes that professionals largely re®ect the society that trains them and in which they absorb their values. Accordingly, in the United States “ethics emulate a democratic ideal and attend to the pluralistic demands of a diverse society composed of multiple ethnic and religious allegiances.” He wonders, how-
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ever, whether “in different political contexts other ideals can and do arise . . . a universal relational morality in which a sense of responsibility for another resides in some other kind of understanding, . . . or perhaps in a universal religious construction.”27 When re®ecting on alternatives to the prevalent American ethos, as a philosopher Tauber focuses on yet another universal ideal of morality; in my opinion his observation that physicians are molded by the societies to which they belong and in which they practice is seminal. This observation is particularly relevant in understanding healthcare professionals of the Institute. They have been trained in Western institutions but remain Pakistanis in the way they make sense of their personal and professional worlds. They have a particularized way of interpreting what constitutes right and wrong, and they ground this interpretation in local norms of behavior. The ethical framework that guides interactions between healthcare professionals and patients and their families, and indeed between patients and their families, is intricately woven with ¤bers of indigenous cultural and religious values that differ in seminal ways from a secular understanding of what constitutes ethical professional conduct in the practice of medicine. In the Institute, physicians act under a mantle of authority fashioned from the cloth of socially and religiously legitimized power and dyed with a deep sense of professional obligations. Patients are perceived as powerless in the face of a life-threatening disease (for which the physicians have a “cure”), and each patient is considered urgently deserving of care. Their vulnerability is seen as compounded in instances when none of their family members are willing to donate a kidney. Perceiving patients as victims shifts them into a moral domain that makes it an ethical duty on the part of those in power to come to their rescue. In this light, the focus shifts from an impersonal consideration of rights of patients (and family members) to one of personalized obligations to each patient. There is a prevailing sense that it is the responsibility of healthcare professionals to ensure that justice is done to the patient, and furthermore, that it is the professionals who possess the medical knowledge to understand the situation and the surgical expertise to take necessary action. The approach to the patient and the family (circumstances of the disease and cultural norms rule out interactions with the patient
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alone) is clearly parental. The staff begins with the premise that the distressing nature of the disease, combined with illiteracy and lack of knowledge of the highly technical medical science and surgery involved, makes an autonomous decision unlikely by patients and their family members. Physicians always begin by explaining the nature of the disease and the required surgical procedures (the transplantation and donor nephrectomy), and they emphasize the low morbidity and the fact that no mortality has occurred to date among donors in their hands. But in the ¤nal analysis, healthcare professionals consider it their duty to instruct and direct family members into making the correct decision, that it is their moral obligation to save the life of kin. The staff is visibly delighted and openly praises family members who come forward to donate; staff members are just as vocal in their disapproval of those who are seen as reluctant to be tested as donors. Patients, victims of disease, and uncooperative families arouse in the healthcare professionals a ¤erce advocacy that seems to push everything else to the side. I asked the social worker once about her thoughts when family members did not offer to donate a kidney despite all efforts on her part. I can now tell a month ahead of time when a family is not going to give a kidney. Even when they say they will come in for tests [as a donor], I can tell that they won’t. Patients will tell us how their relatives chhor daitain hein [forsake them], do not visit them if they think that they will have to give a kidney. Our patients become bheek mangey [beggars]. They are majboor [helpless, powerless]. We are never angry with them. It is the families who make us angry. [She turned to one of the residents.] Nazir, do you remember baicharee [pitiable, helpless] Saima and her mother? You must meet her, Dr. Moazam, this eighteen-year-old bachee [child]. Her mother was a good match, but it took us six months to complete her workup [as a donor] because she wouldn’t keep her appointments, always had some excuse or the other.
Ms. Azra’s use of the metaphor of “beggars” in this case did not signify monetary destituteness but rather a situation in which she
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saw patients reduced to begging for a kidney and a chance to continue living. The resident added with anger, “She [the mother] does not even bring Saima in for her dialysis on a regular basis. She waits until [Saima] is ®uid overloaded and really sick. And then she lies. I even overheard Saima tell her once, ‘Maa, Khuda key liyey jhoot bolna chor do [Mother, for God’s sake, stop lying].’ ” Ms. Azra continued, “I know of mothers who pretend that they are neighbors and not mothers. And then we had this man whose brother gave him a kidney, but he had to pay [the brother] for it ¤rst.” I asked how she knew this. “Because the patient told us afterward, and he was crying. If we had known before the transplant, we would not have done the operation.” In my own interviews with patients who had been transplanted and others who were waiting for donors to be found, there was evidence to support the contention of the staff that in many cases family members did indeed “forsake” patients out of fear of having to donate. The anger and bitterness of the patients waiting for kidneys often mirrored the sentiments of the healthcare professionals. One patient, a dark-skinned, scrawny man called Haleem, who looked much older than his forty-¤ve years, had been on dialysis for almost two years. He was always accompanied by his wife Sakeena, a chatty, assertive woman who interrupted her husband frequently and did most of the talking during my several conversations with them. Haleem would sit, a picture of dejection and despair, pulling absentmindedly at the skin of his forehead and often responding to my questions by pointing to his wife and saying, “Ask her. She knows.” I learned that Haleem had ¤ve brothers of whom four were married; none were willing to give a kidney and had stopped visiting him to avoid being asked to do so. Two married sisters had not been approached (by Haleem or the physicians) to donate as following marriage women are perceived as being bound by decisions of husbands and in-laws, who are often felt to be unsympathetic. Although not a blood relative of Haleem, Sakeena was now willing to donate a kidney to him. Haleem spoke sadly of how prior to his illness, as the oldest brother, he had worked for years as a laborer in Dubai, sending money home to support his mother and brothers. He said
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bitterly about his brothers, “unko maa sey bhee mohabbat nahin, to mujko kon dey gaa [they do not even love their mother, so how will they give me a kidney]?” He felt that he had shouldered his obligations to the family, but they in turn were failing to do so. He told me once in a voice devoid of any hope, “mujhey zindagee ney gira diya hey” [roughly translated as life has smashed me into the ground, defeated me]. I also met Aslam, another man in his forties, and his wife and ¤rst cousin Khurshid, who had donated her kidney to him a few months earlier. As a furniture maker with his own shop, Aslam had been more af®uent than his two brothers and had in fact employed his younger brother in his shop for several years. This brother had initially agreed to be tested as donor and was discovered to be a good match. Aslam described himself as being very close to his brothers and their families, often helping them out ¤nancially. However when the time came to donate, both brothers backed out. They were always visiting me, coming to my house everyday [the families lived in close proximity to each other] before the talk of a kidney came up. After that, they stopped even inquiring about me. Na salaam, na du’a [Neither greetings nor prayers for my welfare— complete abandonment]. I used to think that there were no brothers like mine in the whole world. In the beginning even my bhabis (brothers’ wives) were willing to give their kidneys to me. But at that time I had money. If I bought biryani [special rice dish] for my children, I sent the same for my brothers’ children. Ub sirf paisey kaa dor hey [It is the era of money now]. Money has replaced everything, including love.
I asked Aslam why he thought his brother had changed his mind. He said that it was because he was afraid, adding that people had told him that this was a very big operation. He said, “My brother pretends to be brave like a lion, but his heart turned out to be like that of a cat.” Aslam told me that his brother had wanted him to sell the house he owned and expected perhaps to be given some of the money. It was after this, Aslam said, that his wife went to the hospital without telling him and offered to donate her kidney. When I
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spoke to Khurshid, she told me how angry Ms. Azra had been at Aslam’s brother, and described her insistence that it should be the brother who donates. Khurshid said that even when she offered to donate her kidney, “Madam” kept telling her to send the brother to her so she could speak to him about his duty to donate a kidney. Conversations that took place among physicians and staff during the tea break in the busy pre-transplant clinics opened a window through which I could observe how they felt about their work, the light in which they saw their patients, and their reactions toward families who were reluctant to donate a kidney. The atmosphere over tea was always relaxed, with much laughter and conversation and a general sense of camaraderie. Nevertheless, characteristics of the hierarchical Pakistani culture were always noticeable in the interactions that took place among the staff. The consultants and Ms. Azra, the “seniors,” always sat at the end of the long communal table closest to the door, and I was expected to sit with them. The residents spread down the table beyond this end while the chairs at the furthermost part of the table accommodated the dietitians and other staff members. If a consultant walked in and there were no empty chairs, one would be vacated with alacrity or another brought in by one of the residents, and everybody would slide downward along the length of the table to accommodate the newcomer. Although some cross conversation did occur between the residents and consultants, particularly with the senior house staff seated closest to the latter, I noticed that the majority of exchanges took place within one’s own peer group. Consultants were always addressed as aap (similar to the French vous) and never by tum (like tu) or their ¤rst names. This deferential mode of address mirrored the style of communication at home between older and younger family members and was never breached. During one of these tea breaks in the pre-transplant clinic, while the usual platters of cookies and samosas (fried potato fritters) were being passed around, Ms. Azra walked in, pulled up a chair next to me, turned to Dr. Badar, and said in exasperation, “This case is beyond me. What do you think I should do?” He replied, “Take the kidney from the husband.” Ms. Azra responded with a sigh that the
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problem was that he had only one kidney. At this point Dr. Fatima, the female nephrologist, smiled and remarked, “That is why he has offered himself as a donor so willingly. He knows that we can’t take his kidney.” There was a guffaw around the table, and I told Dr. Fatima that I thought she was being cynical. Not at all, she responded and proceeded to tell me about another man she had spoken to in the clinic regarding donating a kidney. She said, “He told me, ‘Doctor Sahib, I don’t mind giving my kidney but I have sugar [diabetes] and blood pressure [hypertension], so I can’t give.’ And then he named two other diseases that he said he was suffering from.” The residents now joined in the conversation. One said, “Age. They always use age. They say that they are over ¤fty because they know that we will not take (a kidney) from over ¤fty years of age.” But how do they know all this, I asked. Another resident spoke up, and I saw several heads nod in agreement. “Because they talk to each other in the clinic, Madam. They know the diseases we inquire about, and then they tell each other.” Ms. Azra added with a smile, “You should stand one day and look out of the window [that overlooks the open space that serves as an over®ow waiting area]. You will see them talking in groups there, talking, telling each other, exchanging information.” Somebody seated further down the table now advised me that I should sit for a while in the waiting area myself and listen to the conversations that take place among the members of different families. A resident laughed and added, “But Madam, don’t wear your white coat when you do that.” Everybody was now enjoying trying to further my education. Dr. Badar smiled and told me, “Better still, wear a chador [a large scarf ] and keep your face covered. You will hear even more.” Everybody laughed. Residents talked about how savvy family members get over time. One said, “When they get their blood group tested they can see that it does not match the patient’s. Then they will come in and insist that we take their blood [to transfuse to the patient]. They say, “Doctor sahib, I insist. I will give you all the blood you need.” Several conversations now began with everybody relating personal experiences about how some family members try to get out of helping their kin. There seemed to be unanimity of opinion on this point. One of the
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residents mentioned Salma, a patient whom I had also been following for over a month. This recently married young woman had developed ESRD following a poorly handled ¤rst pregnancy and miscarriage in her village. In an interview with me several weeks ago, her brother had informed me that he would donate a kidney, how could he not, for after all “she is our blood.” An educated man, he had told me in English, “no problem, Madam.” I had noticed, however, that after undergoing initial tests Salma’s brother had failed to show up in the clinic to be scheduled for an angiogram. When asked about the reason, Salma, who came to the clinic for dialysis every week, usually accompanied by her motherin-law, would only say that her brother was not feeling well. The resident, with suppressed anger and indignation in his voice, mentioned that the brother had not shown up in the clinic again. He said, “By the time we ¤nd and work up another donor for her she will have become Hepatitis C positive [a high risk in Pakistan from blood transfusions] and then it will be too late to transplant her.” Later, due to my own concerns about Salma’s fate, I asked Dr. Badar what he thought would happen to her if no donor could be found. He said that he could not be absolutely certain of what would transpire, but based on his own experience with similar cases, he speculated on what was most likely to happen. He said that the brother would probably not be persuaded to donate his kidney or even return to the clinic to speak with the physicians. In that case, if Salma’s in-laws had to continue to bring her to Karachi from the small town where they lived for dialysis twice a week (he did some rough calculations on transportation and other expenses), “it will end up costing them around Rs. 8,000 to Rs. 10,000 per month. This is too expensive for any family. They will sell Salma’s jewelry to pay for it.” He then related to me the story of a man who was transplanted and had to travel a long distance to come to the Institute for followup. Apparently the graft was not working well, and for several days he did not show up in the clinic. “When he ¤nally came I was very angry with him. At ¤rst he was quiet and then he began to cry. He said that he had collected money long ago and had bought gold earrings for his little daughter as a gift. The man told me that he had
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to sell those earrings to get enough money to come down to the Institute that day.” Dr. Badar was quiet for a few moments and then said, “He died eventually.” Salma’s face reappeared in my mind. An attractive young woman, talking vivaciously on her ¤rst visit to the clinic with her brother, I had watched her grow quieter over the subsequent weeks on dialysis, becoming increasingly sallow faced and with a worried expression replacing her smiles. So I asked Dr. Badar about her again. I mentioned that she was only twenty-two years old and married for a mere six months. I asked what he thought would happen to her if she did not get a kidney from her brother. He was silent for a moment and then said quietly, “She will probably die. Her husband will get another wife.” And nine weeks into my research, for a few seconds I was no longer an observer looking coolly into a room through a window, dispassionately taking notes; I had been transported into the room itself. I suddenly comprehended what drove physicians to use every weapon they possessed, short of tying a family member down, to get a kidney for their patients. I realized that at that moment I too did not wish to consider rational ethical principles or philosophical arguments about autonomy and rights. With Salma’s face in front of me, what I was feeling, my deep anxiety for her, came straight from my gut. Institute staff members, ¤erce advocates of patients facing recalcitrant family members, do not travel a path of non-interference paved with intellectual detachment and information provided in a dispassionate manner. They interfere actively in the lives of patients and their families as they attempt to ferret out donors; they reason but also prod, push, cajole, and threaten. They do not remain detached; they scold, express their anger and disapproval openly, and employ emotional blackmail through reminders of cultural and religious obligations to kin. They get emotionally involved with their patients as they attempt to correct what they perceive as dereliction of duty by family members unwilling to save the life of kin. In doing this, healthcare professionals assume the role of wise elders or parents within a family in which some members are unable to comprehend (due to illiteracy, ignorance, fear, desperation, or a
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combination of these) what is in their best interest, what is the right thing to do. The family has to be made to understand that the morally required action on their part is to provide a kidney, just as it is the physician’s duty to ¤nd and transplant the kidney. In the local moral world of the Institute, the language employed is one of duties and obligations, of physicians to patients and of family members to one another. Healthcare professionals, especially the females Ms. Azra and Dr. Fatima, were particularly harsh in their judgment of male family members who appeared reluctant to donate a kidney to kin. The general feeling was that in the patriarchal, androcentric culture of Pakistan, women were powerless and therefore more likely to be coerced into donating kidneys. (The evolution of the Institute’s ethos of protecting women and the mechanisms employed by the staff to do so are dealt with later in this chapter.) Underlying the push for males to donate also lay the belief of some that as privileged heads of households with greatest authority, men must shoulder a greater responsibility for the welfare of members of their family. In one of the clinics I observed an exchange between Ms. Azra and the brother of a fourteen-year-old boy in renal failure that was characteristic of many others I would note during my time in the Institute. The patient had been on dialysis for a year, and Ms. Azra told the twenty-two-year-old brother that it was time that he was transplanted. She asked him directly, “Why are you not giving your kidney to your brother?” He looked down in obvious embarrassment and said that this might make him kamzor (weak, debilitated) and what if his kidney did not work if transplanted. Making no attempt to hide the disapproval on her face and irritation in her voice, Ms. Azra told him peremptorily that the patient was his brother, and that donating a kidney would not endanger his life, adding that he should get his screening tests done. The brother remained silent. She then threatened him that if the family did not bring a donor soon she would stop the dialysis on the patient. The patient’s brother now responded by saying that he would bring their mother in to be tested as her health was better than his was. After he left, she turned to me and remarked angrily, “He has said this before, but I doubt if he or the mother will turn up to be tested.”
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She said that she was afraid that the poor child would never get a kidney and die. On another occasion one of the residents informed Ms. Azra about a forty-year-old man on dialysis whose siblings seemed reluctant to donate a kidney. That day the patient was accompanied by two sisters and a younger brother. She summoned the brother to where she was sitting and questioned him bluntly, “Why are you not giving a kidney to your brother?” I observed as the young man dropped his gaze to the ®oor refusing to meet her eyes. Then he said, “Madam, you know that I had surgery on my leg a year ago, right here in this hospital. They put a rod in my leg. I don’t have enough blood in my body.” Ms. Azra responded sternly, “You look hutta kutta [slang for hale and hearty, in excellent health] to me. I think you can give a kidney.” I once observed Dr. Fatima interviewing the brother of a young woman who needed a kidney. A strapping young man, he towered over the diminutive, slightly built physician in her white coat. When she suggested that he should get himself screened as a donor he said, “Madam, I would like to give my kidney, but my wife won’t let me do it.” She looked him in the face and said with barely concealed anger, “Really? And tomorrow when you want to marry and bring home a second wife, will you ask her permission for that too?” This sarcastic comment was one that I was to hear frequently from both female staff members as they faced recalcitrant males who offered the disapproval of their wives as the reason for their reluctance to donate a kidney. In one of the pre-transplant clinics I watched Dr. Ahmed’s interaction with the husband and the son of a woman (not present at the time) who had been on dialysis for several months. The staff had been unsuccessful in their attempts to ¤nd a donor for her and felt that her husband, who was also her ¤rst cousin, should be screened. Earlier, I had been informed indignantly by Ms. Azra that instead, the husband had presented his bachey (children) as donors; ¤rst he offered an unmarried daughter, and when the staff had refused to consider her as a donor, he had returned with a son. The staff suspected that the son was younger than the age they had been given by the father (twenty years old). (In rural parts of Pakistan, birth
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certi¤cates are still a rarity as a majority of births take place at home; patients therefore are seldom aware of their exact ages.) To the staff this was a clear case of a man who not only was abdicating his responsibilities to his wife but, in addition, was offering his “children” (although both legally adults) as sacri¤ce. I was told that the father had been provided lengthy and repeated explanations about the necessity for transplanting his wife and the low risks involved for the donor, all to no effect. This was therefore deemed a “problem” case, a man who could not be persuaded to save his wife’s life and who was to be referred to Sir for resolution. I found out later that it was Ms. Azra and Dr. Fatima who had colluded in referring this case to Dr. Ahmed. I saw the bearded father and his slender son in a cubicle sitting next to each other on the examination table. Dr. Ahmed, his glasses perched on his nose, stood facing them with his entourage of physicians clustered around him. As I walked up I heard Dr. Ahmed say in an outraged tone of voice to the father, “Sharam karo, kutch sharam karo [You should be ashamed, feel some shame].” Cleanshaven himself, Dr. Ahmed then pointed to the man’s beard and said with sarcasm, “That is why I don’t keep a beard. You should give your kidney to your wife.” The man with a small smile said something that I could not hear, and Dr. Ahmed said emphatically, “We will not take a kidney from your son, I tell you.” He then told the son to leave the cubicle (which he did with what I felt to be a smile of relief ) and explained to the father what the screening tests for donors involved. The man listened and then nodded his head in the af¤rmative. One of the residents moved over to ¤ll out the investigation slips, and the other physicians moved on to the next cubicle with visible satisfaction. Justice had been served. Markus and Kitayama have conducted several studies in crosscultural psychology regarding the emotional consequences of an independent versus an interdependent view of the self and the implications of this for social behavior. They believe that in societies characterized by a construal of the self that is largely interdependent, “in contrast to the ego-focused emotions,” other emotions such as “feelings of interpersonal communion, and shame, have another person rather than one’s internal attributes, as the primary referent.” In
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such societies, the most common negative emotions are most likely to be those of anxiety, fear, shame, and “a perceived disengagement of self from others.”28 The concept of “shaming,” both in private and in public, is also a strong weapon in collectivistic cultures in disciplining and modulating behavior in children. Dr. Ahmed had skillfully used the power of cultural and religious norms against the man in this confrontation. By pointing to the man’s beard, the mark of a religious Muslim, he had alluded to what he saw as this man’s shameful hypocrisy in not facing up to Muslim obligations toward kin. (What cannot be discounted here is Dr. Ahmed’s own biases, that of the clean-shaven, “modern” and progressive Muslim.) Also, being the father of a daughter and a son himself, Dr. Ahmed was perhaps using his own yardstick to measure what he believed constituted the correct role of the head and the father of a family toward offspring. In this encounter he had symbolically assumed the role of a parent to an adult (the reluctant father) only some years younger than himself, skillfully employing the weapon of public shaming honed on the dual whetstones of religious and cultural obligations of a husband and father. The manner in which family members reacted, responded to, and “handled” physicians in turn was also intriguing to observe. This too occurred within a cultural framework that accepted hierarchy and authority and closely followed the template of a Pakistani family. In the Institute, as well as in my own practice, patients and family members frequently referred to physicians as their maibaap (mothers and fathers), as those who knew what the correct act was, the “elders” who in their wisdom were watching out for their interests. A common statement I heard from them was that just as Allah is up “there” (in heaven), physicians are “here” (on earth) to take care of people and watch out for their welfare. This, of course, did not mean that patients and families did not experience con®ict with the physicians or agreed with them on all issues. But when this did occur, it was not considered appropriate to voice disagreements openly; the situation required less direct, non-confrontational modes of response and negotiation. The examples mentioned earlier—reluctant male donors offering “excuses” —illustrate some of the methods employed; underlying most excuses
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were efforts at “saving face,” de®ecting attention from the embarrassing fact that one was reneging on obligations, refusing to come to the aid of a family member. Salma’s brother, as an example, by stating that he was ill and then disappearing from the clinic rather than admitting directly to the physicians that he did not wish to donate, was also working within the same cultural parameters. Besides elaborate accounts of various diseases and illnesses that made donating impossible, I came to recognize occasional instances of subterfuge. These included declarations that somebody who was in fact the brother was really a cousin (siblings are approached as donors before cousins are) or a neighbor rather than an aunt or uncle. In all my weeks in the Institute, I never observed a family member approached by a physician as a potential donor respond with a direct no, or resort to an argument based on a right to refuse to donate, or state that it was his body and therefore he was free to choose what he wished done with it. What I also observed, and found intriguing, was that in some instances patients in need of a kidney also colluded in these “stories.” Perhaps this too represented an attempt to save face and embarrassment for the family unit in front of physicians. Internal matters and tensions within the family were to remain internal.29 For many patients, the workings within the interfamilial world had to be protected from the public shame of admitting to a loosening of the knots of obligations toward kin even if this made the work of physicians to save their lives more dif¤cult. Within the concept of a demarcation of the ghar (the inside) from the bahir (outside), for some patients at least, healthcare professionals had to be relegated to the latter domain to veil the shame of the family. Male members of the family equally enmeshed in family ties and despite, or perhaps because of, greater power and seemingly more options than women, appeared to face greater dif¤culties in saving face in front of physicians who subscribed to values familiar to all the protagonists in the drama unfolding on stage. Men who were reluctant to donate could not entirely conceal their sense of shame and guilt, which they tried to camou®age with various explanations and justi¤cations. Many males, in the words of the staff, ghaib ho jatey hein (disappeared) from the clinic and led me to wonder how many potential donors were lost to the physicians through their ag-
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gressive approach to families. Paradoxically, women, perceived as having less control over their lives, were more liable to be given an “out” by physicians from requests for donating a kidney. The nature of interactions between the Institute’s healthcare professionals and patients and their families presented a landscape that was vastly different from the one brushed with the therapeutic distance with which I was familiar in the United States. In the Institute, clinics were emotionally charged arenas of battles that lacked the hushed, cool, scienti¤cally rational atmosphere that characterizes clinic visits of patients in many Western societies. Not that science and its “facts” were absent from the dialogues in the Institute; they were just jostled aside by feelings, passions, and emotions on the part of all who were involved, physicians and laypersons alike. Tellingly, the pre-transplant clinic of the Institute was wryly referred to as the Maar-Dhaar clinic (the clinic of ¤ghting, con®ict, and noise) by the staff. On days when they were largely unsuccessful in their attempts to obtain kidneys, it was renamed the Ghamon kaa clinic (the clinic of sorrows); grief and indignation were written large on the faces of physicians as yet another patient, with no kidney in sight, walked out the door. In their inability, or unwillingness, to maintain neutrality and their attempts to control situations that were often beyond control, I sensed symptoms of emotional burnout among some of the physicians. Late one evening as I was completing my notes, Dr. Fatima walked into my of¤ce. It had been a frustrating day in the pretransplant clinic. As we chatted, she told me that she was thinking of requesting that she be allowed to work only in the post-transplant clinics. “At least there I know that patients have already received kidneys and are doing well. It is so much less stressful for me.” I remarked with a smile that this would leave one less person to protect women. She smiled in return but did not respond. The next week she was back again in the pre-transplant clinic, in the thick of the Maar-Dhaar. Protecting Vulnerable Women: Pakistani Gatekeeping
In one of the pre-transplant clinics, soon after I had begun my ¤eldwork, I heard a resident approach Ms. Azra and say to her with
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a meaningful smile, “Madam, we have a ‘police case’ for you.” I was to learn that this was a euphemism used for families whom the staff suspected were not being entirely honest about something. The most common “police case” occurred when an unmarried female was brought in as donor, with a statement that she had come khushee say (willingly, voluntarily), but the staff suspected that there were male members in the family who could donate but were not coming forward to be tested. Ms. Azra was considered a master at digging down to the truth in such situations, her technique laughingly described by her colleagues as “interrogation rather than interviewing” of the family. In this particular case, after her interrogation, she informed me with annoyance etched on her face and a disapproving tone in her voice, “Just look at this, Dr. Moazam. Five brothers in the family, and they have brought in their unmarried sister to give a kidney.” This was my ¤rst introduction to a belief shared among many of the staff that just as patients were victims, many women were similarly helpless in the androcentric Pakistani culture and open to coercion when a family member needed a kidney. Females within certain families therefore also quali¤ed as “victims,” a vulnerable group which required protection; this too was seen as the responsibility of the healthcare professionals. This belief extended to many of the senior physicians in the Institute, but at a practical level it was Dr. Badar, Ms. Azra, and Dr. Fatima who stood guard at the donor entrance. These three individuals were the ¤rst contacts and primary screeners of all family members referred to the pre-transplant clinic as potential donors. In their discussion of living organ donation in the United States, Beauchamp and Childress describe how healthcare professionals sometimes take on the function of “moral gatekeepers to determine who may undertake variably risky acts of living donation of organs and tissues for transplantation.” This role also involves ascertaining the donor’s voluntariness to undertake what is considered a “supererogatory” act. The authors recommend that healthcare professionals must begin with the presumption that living organ donation “is praiseworthy but optional, even if living donors view their acts as obligatory.”30 Others have suggested that it is the competent donor alone who should be the ¤nal decision maker as to whether his or
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her act of organ donation is worth the risks it involves.31 Despite the diversity of these perspectives, they nevertheless re®ect local social values and offer a particular understanding of human agency and human relationships as well as culturally grounded concepts of what constitutes ethical physician-patient interactions. My research in the Institute revealed what could also be construed as “gatekeeping” functions of Ms. Azra and Drs. Badar and Fatima, but this Pakistani gatekeeping was guided by the norms and values of the local world. In this world the historical and social construal of the self largely perceived the individual as inextricably enmeshed as part of the larger unit of the extended family, and societal systems employed hierarchy and authority rather than individual rights to maintain social order. In their protective stance toward females, these three professionals utilized a nuanced understanding of the realities of life for Pakistani women; each used as a measure for action the particularities of his or her own life experiences rather than an overarching feminist argument in which all males and their systems were perceived as primary oppressors of females. Intriguing for an androcentric culture, each believed to varying degrees that some females, powerful mothers and nanands (wives of brothers) in particular, were frequently responsible for the disenfranchisement of women. Married women were considered helpless in the face of decision making that often rested in the hands of female members of the husband’s family of origin. In such cases the male was often perceived as relatively powerless, a pawn, in the domestic machinations of powerful women of the household. As a result, the staff frequently did not ask married women to donate a kidney unless all other avenues had been exhausted, and if a woman stated that her spouse or in-laws were not willing to let her donate she was never pressured further. To do so was seen as placing her in a dif¤cult position, a reasoning that was never applied, as I have shown, when it came to married male donors stating that they were unable to donate due to disapproval on the part of their spouses. Based on their experience in the Institute, many of the staff believed that following a donor nephrectomy it was extremely dif¤cult for a woman to get married, a major consequence in a culture in which marriage is seen as a religious duty and thus critically impor-
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tant in the life of both men and women. They also realized that women who remained unmarried faced additional problems of a pragmatic nature. Even if educated and working outside the home, culturally it is not considered appropriate for single women to live alone; they must either reside with their parents or, following the death of their parents, with one of their married siblings. Although I heard from some families that single male donors also faced dif¤culties in getting married, this was infrequently a concern verbalized by healthcare professionals. The concern for the negative repercussions for unmarried female donors was based on empirical evidence from the early days of the transplant program. Dr. Khalid related to me their experience with a family in which a kidney was obtained from one of two sisters, both of whom had offered to donate to their brother. This served as a “paradigm case” (among others) which was repeated to me by several members of the transplant team. In the beginning we did not understand anything about how the family dynamics worked . . . she was a pretty lady. When the question arose of the marriage of the one who had donated, she was such a pleasant lady, by any standard, in any society; the other sister got married, but this one couldn’t. The family came to us and said that nobody wants to take her in marriage because they are saying she doesn’t have a kidney, she won’t be able to have children. She won’t be able to take care of her family. And that kind of hit us. . . . [In the case of another married woman who wanted to donate to a brother] her husband said no, said this would affect his family. But in addition, her mother-in-law would also object that she does all the housework, that I have brought her [the woman] into my house so I can rest. [He laughed.] . . . She would push her son. . . . I have worked hard all my life, it is now time for me to rest and take it easy. . . . If you dug a little deeper, you found that the mother-in-law was also a major player in this.
I once mentioned to Dr. Ahmed that Ms. Azra believed that experience with families had shown that women were sometimes pushed into donating a kidney. He agreed. “Yes, very much. We would realize that a poor woman is there sitting quietly, maybe with
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her face half covered. Sometimes just to check [whether she was there willingly] I would say, no, we cannot take a kidney from you. And I could see her face suddenly relax, and so I knew.” And what about the dif¤culties in getting a match for marriage after donating, I asked. Was that true? Yes, she [Azra] is absolutely right. People used to come and inquire from us about single women, both if they had donated or received a transplant. They would ask us if they were marriageable or not, should we offer them a marriage proposal or not. I know of cases where they [the family proposing marriage] would just run away and where they would break off the engagement. We actually have photographs of some of these poor women.
Dr. Badar also expressed similar concerns about taking a kidney from a single woman, combining “medical” rationality with personal intuition in his explanation to me. I feel that a young, unmarried woman, perhaps she is twenty-two or twenty-four; she has another thirty or forty years to live. And if she gives a kidney to her parent in whom the kidney is going to last at the most ¤fteen to twenty years, maximum . . . if the parent is old and there are other cardiovascular morbidities, so the patient [may] live for another ten years, but the donor is going to live for ¤fty years. And if she cannot get married, then what is going to be her status? Who is going to look after her? If she is educated, then perhaps she will start working. If she is not educated, she will be dependent on someone, perhaps a brother or another [married] sister. What will be her status in the family? Just like a maidservant. . . . Sometimes I feel that if something happened to me, my daughter will come forward as a donor. She will feel very strongly that here is my father, he has brought me up. She may feel strongly. So if a daughter really insists, I don’t object. But if I feel that the daughter is being pressurized, is in a corner, is not really keen but does not object, then we try to protect the daughter, the young female.
But what if a woman wished to give a kidney to her brother? I asked. I mentioned that she could help him for many more years
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than if she donated to a parent. Dr. Badar said that in such a case he may “consider it.” He added that he had recently started accepting some unmarried females as donors from rural Sindh [a province in Pakistan]. This was based on the advice of some of his urology colleagues who were from that area and were familiar with local customs in which all decisions were communal. When there is a decision [as to who should donate], it is the decision by the [extended] family, not only the father and the mother. It could be an uncle, the head of the family who will make the decision as to who will be the donor. So the head of the family feels morally responsible [that the woman does get married]. So we have started taking more [single women] from the interior of Sindh.
Nevertheless, his concern about using single women as kidney donors was clear. Once I teased him by remarking that in the pretransplant clinic it seemed to me that when he and his staff looked at family members, they saw not people but kidneys, big and small, fat and thin, kidneys walking around and that one of them had to be captured for transplanting their patient. He laughed and replied, “Well, not always. I do not see everyone who comes to the clinic as a pair of kidneys with legs. I do see some as young women who are unmarried and also have kidneys.” However, it was Dr. Badar’s two female colleagues whom I found particularly intense in their advocacy of women, each guided by an experiential interpretation of the realities of life for women, each drawing from her personal life experiences as a woman born and reared in Pakistan. Whereas Dr. Fatima championed the cause of married women, Ms. Azra was single-minded in her protection of young unmarried women whom she perceived as being unable to speak up in their own interests. I would observe as she relentlessly grilled families whom she suspected of coercing a single woman to donate while male donors were available. At such times she brought to my mind the image of a lioness protecting her cubs. I felt that she was reverting to her long-standing role as the nurturer and protector of her younger sisters, a maternal role she had assumed while quite young herself.
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She once narrated a case to me about a young woman who had wished to donate her kidney to her ¤ancé, who also happened to be a cousin. Based on Ms. Azra’s interviews with the family, the staff began to suspect that the young man’s interest in the woman was merely to get a kidney from her, and that he would probably not go ahead with the marriage after his transplant took place. The man and his parents were ¤nally told by the staff that they would accept the young woman as donor only after they had performed the nikah (legal marriage ceremony). I asked what had happened next. Ms. Azra smiled and told me that the young man kept postponing the date for the nikah, until the woman’s parents ¤nally broke off the engagement. My wonder at the degree of staff involvement in the personal lives of their patients was almost as great as my amazement that, at least in this case, their concerns for the future of an unmarried woman had trumped their usual, powerful advocacy of patients and their single-minded mission to ¤nd kidney donors. Ms. Azra also expressed to me her conviction that “in 70 percent of the cases” it was women, especially wives and mothers, who were major obstacles and thwarted her efforts to get a male, a husband or a son, to donate a kidney. In these cases she perceived men as passive and powerless, describing them sarcastically as farmabardar (blindly, unquestioningly obedient) to what they were told by their mothers and wives. I believe that this view was again drawn from her own observations of the family dynamics within the married life of her parents. She had seen the powerlessness of her mother in front of her in-laws and the lack of support by her father, who was unable to oppose the opinions and decisions of his mother. Like many of her male colleagues, Ms. Azra’s primary concern was that following donor nephrectomy most women were unable to get married and were left to fend for themselves after the death of their parents. When I mentioned to her that some of the male physicians had suggested to me that in some provinces of Pakistan it was single men who faced this problem rather than women, she interrupted me before I could ¤nish by saying, “Dr. Moazam, have you found any truth in this claim?” And then, before I could answer, she added, “I have certainly not found any. I have seen so many male
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donors, and I have found no evidence that they have not been able to get married. But I know of many female donors who have not [been able to marry].” To Ms. Azra, marriage was an unavoidable event, dunya kaa rawaj (tradition or custom of this world), an essential part of life even though undertaken at times majbooran (perforce, when no other recourse exists) by women. She validated her views about dif¤culties for single female donors based on cases she had handled in her nearly eighteen years of experience in the transplant program. Gradually I realized that whoever came, he ¤rst brought his women [relatives], sisters, and daughters [as donors]. I noted that these women did not speak up. Perhaps this happens because they are dependent. So I discussed this with Sir. I said, “Sir, if a patient comes and says that this is my donor, then what is our faida [role or use]?” This means that hum unkey farmabardar hein [we are here only to obey them unquestioningly], like “robots.” We should explain to them that we go step-wise; that we will start with them [males] and then it will be the turn of the sisters. [As people would refuse to take female donors in marriage] I thought that we would be saving the life of one patient, but the life of another would get into mushkil [trouble, problem]. . . . I think where Drs. 1 [she named a couple of transplant surgeons] are concerned, their view is that anyone who comes should be accepted by us. They say to me, “Madam, itna sar naa khapaya keejyey [you should not worry your brain so much], whoever comes, take it [the kidney].” But I think of a couple of factors—that if we do this, what will be the effect on the family? I think of these things, and after that I think of the donation. . . . The issue is not that we just increase the numbers, do transplants. . . . The social and psychological factors, in my opinion, all those are important.
I asked her what happened when she disagreed with the physicians on this matter. Did they back off ? She said that they did. “They know that I will get after them, and in the end I will also tell Sir.” I asked if he supported her. If I am right, he always does. And I can always get him to agree. If there is an earning father and there is no one else to give—wife,
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brothers and sisters have been “rejected” [do not match]—then it is all right that the unmarried daughter can give. But if one of the others is available, then I will not let them take from her.
In contrast to her, Dr. Fatima championed the case of wives who she believed were often coerced by husbands and in-laws into donating a kidney. Her protective stance as well as her language was a purer and perhaps a more “modern” re®ection of power dynamics between males and females within marriage. Based on her own life, which was unusually independent in many ways for a woman in Pakistan, she shared neither Ms. Azra’s “traditional” concerns about unmarried female donors nor her belief in the centrality of marriage in a woman’s life. Dr. Fatima told me once that regardless if a woman marries, “she can always work.” I asked her once to elaborate on her concerns for married women. What troubles me is when I feel that a wife does not really want to give a kidney to the husband but is doing so because she has no choice, is doing so under compulsion. If a man has siblings, even unmarried sisters, who can give and if we are prioritizing that siblings should donate, then why should we compel the unwilling wife to donate? Just because she has been married to him, why must she participate in suffering all his problems? If he doesn’t work, she has to suffer; if he is an addict, then too she has to suffer. And if he goes into renal failure, the poor woman has to donate her kidney to him and raise the children. I feel that people in his family pressurize her, as do the neighbors and also the people here [the Institute].
When I asked her how she could judge that a wife was being pressurized, she replied, “I can feel it. I can sense it from her facial expression. And when I have the time, the opportunity [to probe], very often my feeling is proven right.” I asked her what she thought of the concern of Ms. Azra and other staff members that in their experience it was dif¤cult for single female donors to get married. Did she believe that this was an issue? Dr. Fatima replied that this was not her observation. In my opinion, of all the unmarried women who have donated here, except for a couple whose stories we were told very early in the pro-
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gram, all have managed to get married. I think there is no special problem. . . . It is just that this thing is discussed repeatedly, mentioned again and again, so people begin to say that we don’t want to take a kidney from girls, that they won’t be able to get married.
I mentioned to her that in my interviews with families, some had indeed mentioned to me this dif¤culty for single women and the fact that if they did manage to get married, the match was usually not one of the best, and often to a divorced or older man. Dr. Fatima responded, “But such ‘social’ problems are equally bad for single males.” However my own interviews with several families indicated that unmarried male donors, particularly if they had a gainful occupation, were less liable to suffer repercussions following a donor nephrectomy than single women. For potential donors who arrived in the Institute, it was a luck of the draw as to which of the three gatekeepers was their ¤rst contact; on this factor largely depended who among the family members was the most likely to come under pressure to donate. Although they shared a concern about the helplessness of women, each of the three gatekeepers brought their own life experiences, expressed in their individual styles, to bear on their interactions and decisions about who should donate. Dr. Badar was generally laid-back and friendly in his approach, often joking with the families. He rarely exhibited the raw intensity that I observed at times in his female colleagues in their interactions with families. Because he was a privileged “doctor son,” Dr. Badar’s life had differed in signi¤cant ways from those of the two women. Even though he was protective toward women, nevertheless his vantage point and approach were that of a male in a culture which inherently provided more power and status to men. He had had more control (although it was never absolute for men or women in Pakistan) over decisions in life than the social worker and the female nephrologist. For him, among siblings (considered the “¤rst cut” as donors together with parents and offspring) unmarried women (sisters and daughters) were certainly to be protected but not to be ruled out as donors if in his judgment they appeared willing to donate. He was generally not suspect of the willingness of wives to donate to husbands; wives were
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almost never probed too deeply if they told him that they wished to donate. On a few occasions, I observed him gently push reluctant wives to give a kidney. Such instances were not lost on his keen-eyed female counterparts, who were quick to verbalize their disapproval both to him and to me (and occasionally to Dr. Ahmed). In contrast to Dr. Badar, the two women had experienced ¤rsthand and through the lives of their mothers and women close to them what it was like to be less privileged and less in control of life events on the basis of being born female. Both were now in powerful positions of authority, but each still had one foot ¤rmly planted in, and one eye acutely trained on, the dark terrain where they perceived many women still to be residing. When dealing with families I felt that they were in the thick of the fray at levels that plumbed both emotions and psyche; their male colleague, although no less involved, tended to be far more “cerebral” in his interactions. The social worker, protector par excellence of single women, whether sisters or daughters, meticulously ferreted out all male members in the family before she would turn to a female as donor. She was also more liable than the male nephrologist to protect wives from donating, but not if the only other alternative was a male member in the family who she saw as the primary bread earner. Overall she seemed to focus on the survival of the family unit rather than individual members within it. The female nephrologist, on the other hand, while deferring to the “seniority” of her other two colleagues, was unrelenting in her advocacy of wives who she felt were being pushed to donate. To her, the identity of the female was always ¤rst as a woman and never second to her role as a wife. Although their views on the role of women in the family and society were not always in complete harmony, the two female colleagues frequently joined hands when they felt that a woman was being treated unfairly by the family.32 Their different Weltanschauungs were demonstrated in the case of a young man who had been transplanted in another institution with his sister’s kidney. When this failed to work, he had traveled to the Institute for another transplant and presented his wife, a ¤rst cousin, as a “willing” donor. The family was ¤rst seen by Dr. Fatima, who was convinced that the wife was really not happy about donat-
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ing her kidney (a correct assessment it turned out, based on my later in-depth interview with the woman), and who pushed until one of the patient’s brothers agreed to have himself tested as donor. I discussed this case later with Ms. Azra, who had also interviewed the family. She said that she would have either let the wife donate her kidney or placed the patient on the waiting list for a cadaver kidney when one became available. I asked her why she did not agree with Dr. Fatima’s decision that the brother should donate. No, I am different from Fatima in this regard. That brother is the only person supporting that entire family by driving a taxi. If anything happens to him, the entire family will be in trouble. Also, I am not in favor of another sibling donating if one among them has already donated, and it [the kidney] has not worked.
I was told, and observed it to be true, that to assess the voluntariness of a woman to donate a kidney was no easy matter when she was surrounded by her family members; and asking the latter to leave the room to con¤rm the woman’s willingness to donate often placed her in an awkward position. Sensitive to this, the staff frequently depended on what they called their “feelings, a sense, and just knowing from experience” when a woman had agreed to donate under pressure of the family. This way of gauging and con¤rming the willingness, or not, of a female donor was demonstrated to me in a dramatic manner by Dr. Ahmed in one of the pre-transplant clinics. I was interviewing a family member one day when Ms. Azra hurried in and said, “Sir is calling you. He says you have to see this case.” So I walked out into the main room of the clinic. On the examination table in one of the cubicles sat a thirty-year-old patient, a wanlooking man with downcast eyes, who needed a transplant. Lost in a world of his own, he appeared completely detached from his surroundings and the proceedings occurring in the cubicle that revolved around his fate. Next to him stood a slightly older man, his brother, with whom Dr. Ahmed was locked in conversation surrounded as usual by his retinue of residents, physicians, and other staff members. In the far end of the cubicle I noticed a pretty young girl who
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looked like a teenager, standing quietly. I soon learned that she was their sister and had been brought in as donor. As I walked up, Dr. Ahmed moved back slightly and, speaking in English, said to me in an undertone, “Just watch her face. I want you to keep watching her expression.” He then resumed his talk with the patient’s brother. I watched the bare-footed girl, her serious face framed by a dupatta (scarf ) drawn across her head. Her large, kohlrimmed eyes darted back and forth between the faces of her brother and Dr. Ahmed as she followed their conversation silently. I heard Dr. Ahmed say in a loud voice, “I am telling you, she is too young. Hum is say gurda nahin lein gey [We will not take a kidney from her].” In a ®ash I saw the girl’s eyes widen, and her hand ®ew up to cover her mouth. Behind her ¤ngers I saw clearly the beginning of a startled smile followed by a giggle, which she quickly sti®ed with her dupatta. It was all over in an instant, and her face reverted to a serious expression. Dr. Fatima standing next to me whispered to me softly, “Do you see how happy she is? Now she knows that she will not have to give her kidney.” As I glanced around at the staff, I saw smiles on almost every face. A ¤rst for me, this was a play they had seen enacted and participated in many times before. With a brief glance in my direction, Dr. Ahmed continued his talk with the brother. He told him that the patient had been dialyzed for a year, and it was time for the family to give a kidney. The brother said that it was not yet one year. Records were checked, and dialysis duration was found to have been for ten months. Dr. Ahmed said, “Fine. It will soon be one year. He should get a kidney now.” The brother replied, “That is why we have brought her [the sister] today.” I glanced at the girl. Her eyes were now downcast and her face expressionless. The patient meanwhile sat on, silent, but now following the conversation. Dr. Ahmed said in a curt tone, “No. I have told you we will not take her kidney. Why don’t you give a kidney to your brother?” The man hesitated and then replied, “Yes, keeun nahin [why not], Sir. I will give my kidney.” Dr. Ahmed turned to one of the residents and instructed in a voice loud enough for the family to hear, “Please get his [screening] tests started today. Complete them all within the next two weeks. If
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he does not come back for the tests, stop the dialysis.” As we began to move away from the cubicle, he smiled at me and asked, “Madam, did you see her face when I said that?” I said that indeed I had seen the Master at work. He laughed and said, “You see how they [his team] make me act like Tara Masih?” I learned later that in this case too the family had brought in the girl as donor, stating that she was willing to give her kidney khushee say (with happiness, pleasure) to her brother. The staff, having judged otherwise, had decided to bring the big gun in to push the recalcitrant brother into offering to donate his kidney. I was fascinated by what I had seen, a drama familiar to the staff and replayed masterfully that day for my bene¤t. The staff ’s contention had been demonstrated to me; in the case of a woman brought in as a “willing” donor, her tongue may indeed remain silent, but her face and eyes and demeanor spoke a million words to an experienced, discerning observer. It took me back to my days as a medical student in Pakistan, a time when technology had not yet reached the sophistication of CT (computed tomography) scans, MRI (magnetic resonance imaging) scans, ultrasounds, and angiograms to lay bare the insides of patients. This was an era when the “professor” relying on his (there were no “hers” then) years of experience scanned the “presentation” of the patient, gauged the complex of symptoms and signs, and, as we watched respectfully, intuited a diagnosis that had eluded us. And then later in the operating room, with a few masterful strokes of his scalpel he would lay open before our awed eyes the concrete proof of what he had sensed. Dr. Ahmed had demonstrated a technique reminiscent of those days. In the encounters of the healthcare professionals of the Institute with patients and their families, the operative principle was the benevolence of those in power to remedy what they saw as social injustices perpetrated upon the powerless. For them, the helpless and the vulnerable included patients but also female members within certain families. The ethical world of the professional staff did not begin with a philosophical notion of the equality of all humans. It was not that they did not consider and express this concept to be noble and admirable; it was just that their gaze seemed to keep returning to the realities of their world, the concreteness of what
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they were immersed in daily, the injustices and the terrible vulnerabilities they saw. In the context of what they encountered—poverty, illiteracy, limited resources, androcentricity, a struggle for survival— and within a culture and religion that respects and legitimizes authority, accepts hierarchical systems, and emphasizes interdependencies in life, they used these values as the scaffold on which to build the ethical framework of their institution. They employed Western medicine and technology, but their encounters with patients and their families were colored by a Pakistani ethos of relationships and duties. In this professional gaze, compassion without emotional involvement, a concern for the patients uncoupled with personal engagement, and a focus on rights of individuals rather than obligations to patients seemed alien concepts. In the world they inhabited they held the scales of justice not blindfolded but with eyes wide open to the contextual nuances. William Gass writes that abstract concepts devoid of context “neither permit smell nor re®ect light and nor do they ¤ll space or contain it; it is paint that stains the ¤ngers and dust that turns the sculptor’s hair white.”33 It seemed to me on many days that the healthcare professionals in the Institute had ¤ngers that were deeply stained and hair that was gradually turning white over the years.
3 Giving and Receiving Kidneys: Perspectives of Pakistani Patients and Families If ever my grief were measured or my sorrow put on a scale, It would outweigh the sands of the ocean. Book of Job
This chapter turns to interviews and narratives of donors, recipients, and their families in Pakistan, and my re®ections on the ways in which they try to make sense of end-stage renal failure when it strikes their collective lives. It is an illness that not only threatens the life of the individual felled by the disease but one in which decisions about who should or should not donate a kidney can carry profound practical implications for several enmeshed lives within the extended family. The narratives are used to explore the experiential world of such families and how they negotiate and cope with renal disease and transplantation within the ground realities of their lives. This is an account of how families process in cultural, religious, and moral ways the “scienti¤c” information that donation of a kidney by one member stands between life and certain death of another, and the language and metaphors they use to frame their understanding. I highlight factors I consider underlying the willingness, indeed eagerness, of some families to offer a kidney to kin, and the resistance within others that successfully thwarts aggressive efforts of healthcare professionals to obtain a kidney. What is presented is a mosaic of images collected from the intricate landscape of Pakistani kinship systems—the inherent supports and constraints, strengths
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and weaknesses, and how these play out when extended families are faced with events in which saving the life of one member requires donation of a kidney by another. The chapter revolves around the voices of patients and their family members and their stories. The analyses and interpretations offered are mine; although the voices are ¤ltered through my selective gaze, I have nevertheless tried to capture these voices as accurately as possible. It is my attempt to bridge what Geertz calls “the gap between engaging others where they are and representing them where they aren’t.”1 In order to provide a broader, and perhaps deeper, perspective it is sometimes useful to juxtapose the less known (in this case, Pakistani) images against those that are perhaps more familiar and that have been scrutinized longer and in greater detail. I therefore begin with a brief look at the live kidney transplantation scene in the United States, which utilizes medical science and technology identical to that in Pakistan but which plays out within its own distinctive social and cultural landscape. Positioning of the familiar with the less familiar can sometimes also serve to illuminate assumptions of one while clarifying the framework of the other. Organ Transplantation in the United States The giving and receiving of a gift of enormous value, we believe, is the most signi¤cant meaning of human organ transplantation. Renee C. Fox and Judith P. Swazey, The Courage to Fail
Since the ¤rst successful kidney transplant in the United States by Dr. Joseph Murray in 1954 and the discovery of the immunosuppressive drugs beginning in the 1970s, organ transplantation, particularly live renal donation, has been successfully adopted by physicians in many countries around the world. Borders of developing countries such as Pakistan have been remarkably porous to medical science and technology. Scienti¤c journals of the last two decades are replete with reports of successful renal transplants (which still constitute a majority of all transplants), and graft and recipient survival rates in developing nations compare favorably with results reported from established medical centers in the developed world.2
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In comparison, there is a paucity of studies on the sociological and cultural dimensions of organ transplantation on donors, recipients, and their families in non-Western societies, on persons who, while participating in the medical bene¤ts of what is now a global procedure, are nevertheless products of cultures that have vastly different social and historical evolutions and distinctive moral worlds. A few publications have appeared, largely in medical journals, in which authors attempt to highlight some of the “non-medical” issues of organ transplantation in cultures that are non-Western in their orientation. A majority of these involve quantitative, empirical research, including surveys by indigenous physicians and transplant surgeons, that focuses on concern at the reluctance of people to donate both live and cadaver organs. Writers identify religion, culture, and local beliefs as possible causative factors for this reluctance, but what is largely missing in these studies are the voices of patients and their families.3 I believe that attention to this may provide greater insight into indigenous factors that motivate some to donate organs and others to back away even when this involves saving the life of kin. What is also striking is that even while acknowledging the different cultural and societal norms of “non-Western” countries, the language used and the arguments proposed by the authors to increase organ donation are generally grounded in “Western” metaphors and solutions. These include recommendations for full-time dedicated transplant coordinators, public education, publicity campaigns about “gifting” organs, government legislation, and even organ donor cards, in effect many of the measures that have yielded only equivocal success in increasing organ donation suf¤cient to meet the needs of industrialized countries.4 Within societies of the industrialized part of the world, literature that extends beyond the medical and “scienti¤c” realms and deals with social and psychological aspects of organ transplantation is relatively proli¤c. In the last four decades social scientists, philosophers, and theologians have studied and written extensively on the ethical, legal, sociological, psychological, and indeed political dimensions of organ transplantation in Western Europe and North America. These have included discourse on the relationship of a human being to his body and “body parts” and whether organs of the body can be con-
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sidered and handled as a form of property.5 Sociologists and anthropologists have conducted in-situ ¤eldwork on the psychosocial effects of transplantation on donors, recipients, and their families as well as the medical team involved in their care. In the case of live organ donation substantial research is available on the live donor’s sense of self-esteem and self-worth, the inherent contradiction between the concept of altruism and the individual rights of the donor, and concepts of personhood and the “self ” as they relate to the act of donation.6 Others have written critically about the buying and selling of organs and the potential for commodi¤cation and commercialization of live, unrelated transplants from citizens of less privileged countries and communities serving the needs of the more af®uent.7 Understandably, the language and de¤ning metaphors that color much of this discourse are embedded in the weltanschauung of the protagonists. Cultural underpinnings of the authors inform the analysis and interpretation of organ transplantation and the interactions between donors, recipients, their families, and involved teams of healthcare professionals. Among the metaphors that serve as a clarion call for live and cadaveric organ donation, the most prominent is the “gift of life.” In the case of live donation of a solid organ such as a kidney the act is perceived as truly altruistic in nature as it subjects a healthy person to a major surgical procedure “with no medical bene¤ts to him or her, in order to provide a medical bene¤t to someone else.” It is de¤ned as a heroic, praiseworthy act, one that goes beyond the obligatory and transcends what is normally to be expected from any individual.8 Such a gift of life is considered “supererogatory” in nature, a giving of oneself that goes “beyond duty and claim,” and if given to a stranger, it depicts a love for fellow humans that is in the realm of the sublime.9 Donation of a solid organ, both live and cadaveric, thus often carries with it almost a religious, biblical imagery with a Judeo-Christian tradition of self-sacri¤ce for the love of another human being whether kin, friend, or stranger. In the United States in particular, such sel®ess sacri¤ce to save the life of a stranger assumes a prominent motif for the procurement of cadaveric organs. Perhaps the person most prominently engaged in the study of the
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historical evolution and sociology of organ transplantation in the United States is medical sociologist Renee Fox and her historian collaborator, Judith Swazey. They are unique among social scientists in providing, over the last four decades, an explicit account of organ transplantation in the country, the beliefs that shape it, and the language and metaphors that de¤ne it. They deal with the profound and far-reaching effects of organ transplantation that go beyond the person who gives an organ and the individual who receives it, to their families and involved healthcare professionals. Utilizing ethnographic ¤eldwork for their research, they demonstrate that this “most dramatic and supreme” form of gifting is not a “private transaction” between the donor and recipient but one that takes place within a network of relationships that extend to the wider family and include healthcare professionals of the team. They argue that although the notion of the donated organ as a gift was initially used metaphorically, it has gradually emerged that this “gift exchange” motif within transplantation also carries with it psychological, social, and cultural meanings and repercussions for both donors and recipients.10 The authors believe that many of the psychosocial effects of the gifting of organs can be understood through the Maussian paradigm of symmetrical and reciprocal gift exchange with its three interlocking norms; the obligation to give and an obligation to receive, followed by a duty to reciprocate in kind.11 In the case of a family member perhaps dying of renal disease, it is inevitable that “a member of the recipient’s family of origin, a parent, sibling, or child,” will consider it an obligation to donate a kidney. In their view, once given, this extraordinary gift of life can never be reciprocated; the recipient possesses nothing with the physical or symbolic equivalence of what he or she has received. As a result, the giver, receiver, and their families “may ¤nd themselves locked in a creditor-debtor vise,” which the authors have termed “the tyranny of the gift.” A feeling of un-repayable indebtedness on the part of the recipient may make it dif¤cult to “maintain a reasonable amount of psychic distance and independence from the donor.”12 The other important issue in live, related organ transplantation highlighted by Fox and Swazey (and that has entered as an impor-
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tant motif in the writings of others) is the “gatekeeping” function of physicians. Writing about renal transplantation, they note that physicians understand that emotionally involved family members may be subject to social, familial, and psychological pressures to offer to donate a kidney and may consider it their moral obligation to ensure that they do nothing to “persuade” a family member to donate. In the “social system” of transplantation of which healthcare professionals form an integral component, they therefore take on the task of judging the spontaneity and voluntariness of the family member who offers to donate a kidney to kin. Among the “protective” mechanisms employed by physicians when potential donors are considered to be ambivalent about donating is by telling them (and sometimes their families) that they are not “compatible” with the recipient.13 An additional source for the reluctance of many physicians and transplant surgeons in employing live donor organs remains their unease at submitting a healthy individual to risks, even if small, of the morbidity and possible mortality associated with donor nephrectomy. This ambivalence is understandable in light of one of the basic premises of the professional ethical code that physicians above all must do no harm. Thus, society and healthcare professionals must consider living organ donation as “praiseworthy but optional, even if living donors view their acts as obligatory.” It is an act that must remain altruistic, an act that transcends duties normally expected and imposed on any human for the bene¤t of another, even if close kin.14 Another early and detailed study exploring psychosocial processes involved in family decision making in the United States, and with a substantial portion devoted to live related kidney donation, was undertaken by Roberta Simmons and her colleagues in 1977. A partly updated second edition was published in 1987.15 This study was done at a time when renal transplantation was in its infancy, and there was still debate whether the procedure was worth the expenditure and effort involved. Much has changed since then; many pragmatic and ¤nancial issues related to dialysis and transplantation have been largely if not perfectly resolved, and renal transplantation has become commonplace, indeed “routinized,” in the United States.
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Nevertheless, much of Simmons’s meticulous analysis of “the process of individual and family decision making under stress” when faced with the tragic circumstances of possible death of a member and the decision-making process regarding who donates and why remains relevant today at a time when living organ donation is on the rise in the country.16 Much of the ethos the authors interpret as being behind family decisions to donate a kidney to kin continues to echo in the contemporary discourse on live organ donation in the United States. This is especially true of their description of the donated organ as a gift of life and the act as one that is truly altruistic in nature. Simmons, Marine, and Simmons report that 73 percent of the donors they interviewed agree that it is the responsibility of the family to ¤nd a donor, with those perceiving the donation as an obligation being “less likely than others to have ambivalent feelings about the sacri¤ce.” For such persons the decision to donate is an “immediate, instantaneous one.” The primary reasons given for donating include “the recipient is a central person” in the life of the donor and a person “whose loss would be a major tragedy,” and the act “will make life more worthwhile” for the donors. A majority of donors report the chief bene¤ts they experience following donation are an “increase in self-esteem” and feelings of being “a better and more worthwhile person.”17 The authors report many non-donors as voicing hostility toward family members whom they perceive as “unreasonable in their expectation for help” while also objecting to being pressured. Females, particularly mothers, are seen as less ambivalent to donating a kidney. The authors speculate that this may be a result of the woman’s role as “the customary family nurse and caretaker” for the family during illness and need. Overall however, a large number (57 percent) of eligible donors among family members did not hesitate in volunteering to donate. The data also reveals that those with higher levels of education are more likely to donate, perhaps based on their “greater faith in modern science, medicine and technology.”18 In their analysis of live renal donation to kin, Simmons and her co-authors also use the metaphor “gift of life” and term the willingness to donate as an altruistic decision made by a rational but emo-
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tionally involved individual. The act of donating is perceived as an act of love possessing an “intrinsically rewarding nature.” The reward for the donor comes “primarily from pleasure at viewing the bene¤t received by the recipient” and a satisfaction at “the strengthening of their love” and the “value of their relationship” with the individual to whom they have donated.19 This study points to the complexity and intricacy of the involvement, in varying degrees, of others besides the donor and recipient. Nevertheless, in weighing bene¤ts and costs, and in the authors’ analysis of what is at stake, the pivotal weight in the scale of decision making is the strength of an emotional bond between two individuals, the love and obligation of one family member to another, and the bene¤ts that accrue to each. With this backdrop of the metaphors, motifs, and motives that de¤ne human interactions involving organ transplantation in the United States, I turn to interviews and narratives collected from the ¤eld in the Institute in Karachi. My aim here is to explore how patients and their families, products of a different culture, utilize indigenous values, beliefs, kinship systems, and pragmatism to negotiate decisions about live kidney donation to save the life of a family member, and also the central and directive role played by healthcare professionals in this process. Live, Related Kidney Donation in the Institute Each of us touches one place and understands the whole in that way Jelaluddin Rumi (Muslim Su¤ and poet, d. 1273), The Essential Rumi
Pakistan has a high prevalence of end-stage renal disease (ESRD) with inadequate or understaffed healthcare facilities for dialysis and transplantation. (See chapter 1 for details.) These problems are compounded by poverty, high illiteracy rates, and public ignorance about renal disease and scienti¤c advances. Yet in Pakistan the only chance a person with ESRD has for returning to a modicum of normal life and avoiding certain death is to undergo a renal transplant. In a country that has no cadaveric transplant program in place, the
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choices are live organ transplantation in either a private transplantation hospital in the country (the af®uent may choose to go to India), or an institution in the public sector. The ¤rst option is out of the ¤nancial reach of a vast majority of the population so that the choice for many is to approach the Institute, the only public institution that has the reputation for excellent results and that also provides all care, including medications and donor and recipient follow-up, free of cost. The staff of the Institute, deluged by patients from all over the country, will not accept non-related donors due to the known practice of buying and selling kidneys from unrelated donors in the country, a practice they consider abhorrent.20 Those who bring patients with ESRD for dialysis in the Institute are expected to ¤nd potential donors from among members of the extended family. In the rest of this chapter my direct observations and interviews with patients and their family members reveal the incredibly knotted, interdependent lives many live and how this can in®uence decisionmaking processes about who will, or will not, donate a kidney. I also explore how families make sense of the potentially fatal illness of kin, their motives and the language they use when deciding to give a kidney, and ¤nally, some of the magico-religious beliefs about donor nephrectomy that make others reluctant to come to the aid of a relative. These narratives reveal the strengths of strong kinship ties but also illuminate the dark, tyrannical side of Pakistani family life. Zarina and Tufail: Family Ties That Bind
It was an exceptionally frenzied pre-transplant clinic that morning. Every cubicle was occupied by a silent patient accompanied by several anxious family members waiting to be seen and interviewed by one of the physicians. The honking of cars and buses, the rumblings of rickshaws, and the cries of hawkers vending various edibles and wares on the street outside the clinic provided a continuous cacophony in the background. The tumultuous life of the city seemed to surge into the clinic every time its doors opened to allow another patient inside. The medical team, residents, nephrologists, urolo-
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gists, and dieticians had been working nonstop since early morning. It was now afternoon, but the pile on the clinic table of medical charts of patients still to be seen appeared no smaller. I followed the nephrologist Dr. Badar into a cubicle in which sat a pale, sallow-faced young man called Tufail, who had been on dialysis for several weeks. His wife, Zarina, also slightly built and as tall as her husband, stood next to him enveloped in a black burqa (a voluminous two piece garment that many women wear over their clothes when they leave the house) but with her face uncovered. The social worker Ms. Azra had earlier informed Dr. Badar and me mysteriously that the couple had “more than one relationship, it’s really strange.” Accordingly Dr. Badar began by asking Tufail “Is she your wife? What other relationship does she have with you?” Tufail replied, “She is my wife. She is also my mumanee (maternal uncle’s wife, an aunt).” Dr. Badar asked how she could possibly be both. Tufail said that when his mamoo (maternal uncle) died, he married Zarina, and then he added in explanation, “We belong to the Maqli tribe. Aurton ko kunbey may rukhtay hein [We keep our women within the tribe]. Our women cannot marry outside the tribe.” At this point Zarina added with a smile and an amused glance in my direction, “My sister is married to Tufail’s father. And my mother and Tufail’s naani (maternal grandmother) were sisters. So I am also his mother’s khalazad behan [sister through maternal aunt, a cousin].” Marriages to ¤rst cousins and blood relatives are common in Pakistan, but the familial strands connecting this couple appeared far more complicated. I watched Dr. Badar’s bemused expression as he silently tried to untangle this web. Tufail, perhaps misunderstanding his silence, said defensively, “All these marriages in our family are permissible according to the rules of Shari’a [Islamic Law].” Dr. Badar smiled and responded, “No, no, I am not thinking of that.” I had been in the Institute long enough to realize that in working through the many relationships of the couple, his primary concern was to gauge if one of them meant that Zarina would be a good match for her husband. Following a few more moments of silent, mental gymnastics he said, “Theek hay [All right]. You know that
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tumhein gurda badalnay kee zaroorat hey [literally, you need a ‘change of kidney,’ a common term used by the staff for kidney transplant]. Your wife can go and get her blood tested [as a potential donor].” Zarina did not look pleased. With her brow furrowed, she said that she had the children to take care of. She then pointedly turned away from the nephrologist and addressed me directly, “Our youngest is only two years old. He [Tufail] has no job now. I have to take in sewing to take care of the expenses and to feed the family.” Dr. Badar told her that that was why they wanted to make Tufail well again so he could resume his job and begin to take care of the family. Zarina looked unconvinced, I thought, and kept her back resolutely turned toward Dr. Badar. I asked her what Tufail did before he became ill. Looking unimpressed, she replied that Tufail was a thela-wala (a hawker selling odds and ends from a hand-pushed cart). She added that she often had to go to the market herself and buy and carry back on her shoulders heavy bolts of fabric to sew. Dr. Badar repeated, “At least go and get your blood test done. And get a date for his next dialysis.” He then joked with Zarina, “Even if you give a kidney to him you will still be able to do everything you do now except carry sacks of ®our weighing two and a half mun [approximately one hundred pounds] on your back.” Zarina laughed. After they had left, I told Dr. Badar that based on my own still confused calculations, Zarina would be Tufail’s second cousin and therefore not a “¤rst cut” donor according to their policy. I inquired why he was considering Zarina as a donor. He responded that Tufail’s mother, a sister, and a ¤rst cousin and brother-in-law had all been tested and none had “matched.” He then added that as Zarina had so many different forms of relationships and ties with Tufail and the rest of the extended family, if she would be willing to donate, that there would be “fewer chances” that her donation would be due to coercion. And in any case, “We accept spouses as donors.” I mentioned that I felt that the multiple relationships could lead to more rather than less chances of pressure on Zarina to donate. I asked if one of his reasons for pushing Zarina to donate was based on the fact that he saw the male as the primary breadwinner for the family and that transplanting Tufail would allow him to re-
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sume this role. I added that in this case, however, it seemed that Zarina had always, in one capacity or another, worked to support the family. Dr. Badar smiled and said that it was possible that I was right and added, “But I will tell Azra to help Tufail. She can bring him to the rehabilitation center [to learn a skill] and help him ¤nd work.” I said that I felt Zarina really did not wish to give her kidney, and I did not think that she would get her blood tested. Dr. Badar said that he would arrange for Zarina to meet some donors. “She will then know that there is nothing to be afraid of. After that I think she will agree,” he said. I told him that it seemed to me that he was focused on being an advocate for the patient, that this was his central concern. This time he laughed out loud and said, “Aap bilkul theek keh rahee hein [You are saying exactly the right thing]. When I am here I am only thinking of the patient, and no one else.” Later, with paper and pencil in hand, I managed laboriously to work out all the ways that Zarina and Tufail were “tied” together within their extended family network. Zarina was Tufail’s wife and the mother of their children. In addition, she was his aunt both through having been married to his maternal uncle (now deceased) and being the ¤rst cousin of Tufail’s mother. She could also be considered Tufail’s mother-in-law in a way as her own sister was married to his father. In addition, she was therefore the daughter-in-law of her own sister who was married to Tufail’s father. The following week Zarina did not show up in the clinic, and I learned that she had not reported to get her blood tested. But to my surprise, she was there with Tufail in the subsequent week and had with her the results of her blood test (compatible with Tufail). I was told that she had brought with her another woman, a sister of some sort, who was willing to donate to Tufail. I managed to interview both women separately that day. The “sister” actually turned out to be a neighbor and friend and so, much to Zarina’s chagrin, could not be considered as a donor for Tufail under the policy of the Institute. Zarina, wrapped in her burqa, responded to my greeting with a smile and then went on to tell me that all her children were sick and that she herself was running a fever and had chest pains. I asked her how old she was, aware that Tufail’s age was recorded
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as thirty-two years. She said, “Chalees say ooper [More than forty years],” and added that her husband was younger. I asked how long they had been married, and she said ¤fteen years. I asked in surprise how old Tufail was when they were married. Zarina smiled and replied with equanimity, “Bohat chota tha. Moochein bhee nahin thee [He was very young. He did not yet have a moustache, facial hair]. But my ¤rst husband had died, and they don’t marry women outside [the tribe].” I asked about her children. She said that she had a boy and a girl from her ¤rst marriage, but they resided with their paternal grandparents in another town, adding rather sadly, I thought, that she met them once a year. Zarina and Tufail had six children of their own, four girls and two boys. I raised with her the issue of giving her kidney to Tufail and what he thought of this idea. She said, “My husband says that if you give a kidney, Allah na karey [God forbid] if something happens to you then ghar kaisey chaley gaa [how will the household manage, get along]?” I reminded her that in the last clinic I felt that she did not wish to give her kidney to Tufail. She smiled and said, “Aisee baat nahin hay [That’s not how it is].” I mentioned that she seemed to be the main provider for the family as her husband could no longer work. Zarina said that this was true, but that there was now no one else left to give a kidney. Her husband’s sister had also been tested and was willing to donate, but although this woman’s husband had no objections, her in-laws were not willing to let her donate. She said helplessly, “Ub kiya karoon? Koee hull nahin hay [What can I do now? There is no solution].” Zarina said that people had told her that she should not donate her kidney. “They say that the doctors can put in the kidney of a goat or a monkey in Tufail.” When I assured her that this was not possible, Zarina looked disappointed and said, “If this was possible then we could have bought a nice goat for him.” She then told me of a woman who needed a kidney and that her husband had paid Rs. 150,000 (approximately $2,500) to a man to buy his kidney for his wife. Zarina said that they did not have the money to buy a kidney for Tufail. I later spoke with Tufail, a sad, worried young man far less vocal and assertive than his wife. I asked him what he thought about his
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wife donating a kidney to him. He responded, “Aap ko behtar pata hay [You doctors know what is best for us].” He asked whether there was a chance that both his kidneys had not failed and perhaps he did not need a transplant. It was clear to me that he was concerned about his wife donating a kidney. He mentioned to me that he could not work and that she was now the earning member in their family. I detected no evidence during my interview that he was pressuring his wife to donate a kidney to him, or anything to suggest that he would like her to give a kidney or expected that she should. When I asked him if there was anyone else in the family who may be willing to be tested as donor, he remarked that “itna dil kahan say layein gey [who has so generous a heart]” and that some of his relatives had distanced themselves ever since he became ill. He said that this was because they were afraid to give a kidney, fearful that they will be asked to do so. Zarina interjected at this point, “Why be afraid? Jitnee zindagee hay, Khuda key haath may hay [The length of one’s life is in the hands of Khuda, or Allah]. This world has just become a world of money,” rather than one of closeness to family members. The couple then left so that Zarina could get an appointment for an IVP, the next step in her workup as donor for her husband. The story of Zarina and Tufail, a not uncommon one that I would encounter with variations on the theme, brought into sharp focus for me the world of live renal transplant in the Institute. It revealed the constraints, pressures, and pragmatic concerns that frequently drove the decision-making processes related to donating a kidney to kin. Their narratives brought into sharp relief an alternative universe of renal transplantation, one in contrast to that in the United States. I found it dif¤cult to frame the circumstances of this couple’s life within concepts of autonomy, altruism, and gender power relationships or a language of self-esteem and freedom to make choices. Under the set of circumstances Tufail and Zarina faced, to talk of having any semblance of control on life would be, I felt, almost ludicrous, as would debates on abstract notions of universal versus relative ethics. Zarina did not “choose” to give her kidney to Tufail; she did not mention a sense of altruism, love for her husband, any religious
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metaphors or beliefs (except for the all-encompassing power of God over humans), or any other ideology when she agreed to be tested as a donor. Her language was not one of rights; she did not say that it was her right to donate, or not to donate, or that it was her kidney, her body, to do with it whatever she wished. The framework for her actions remained the stark ground realities of her life which gripped her from all directions. As she put it to me simply, there was no other solution for Tufail to survive. Tufail was equally entangled in the web of an interdependent existence with Zarina. It was dif¤cult to view their lives through a prism of gender power that painted a generic picture of males as oppressors and females as the oppressed, universal takers pitched against perpetual givers. Clearly ambivalent about his wife undergoing a donor nephrectomy, Tufail had also expressed his concerns to me in a wider context that extended to the survival of their children if something happened to Zarina. The family, deprived of his earning capacity (a source of distress for Tufail in a culture in which the honor and authority of the male is connected to his role as breadwinner), was now dependant on her for everything. He seemed to have been forsaken by certain members of his family and kunba (tribe, clan). Circumstances in life had rendered Tufail equally powerless as they had Zarina, although their vulnerabilities and suffering took different forms. I felt that Dr. Badar, while telling me that his primary objective was to obtain a kidney for Tufail, was nevertheless looking at this within the context of the whole family and what he considered constituted its best interest, rather than at his obligation to Tufail alone. He was aware that Zarina was not yet willing to donate a kidney; his attempts to persuade her to do so were through appeals, not to notions of altruism or spousal love, but to Pakistani norms of the centeredness of the family in one’s life. Despite his generally protective stance toward women, I frequently saw Dr. Badar (and also Ms. Azra) base his decisions about whom to protect, when to do this, and under what circumstances, with the family in mind. It was not that he failed to comprehend issues of vulnerability and coercion. He just did not see them as abstract concepts; to him the context in each case was important, and he favored an approach that was commonsensical and just plain pragmatic. The forces that drove de-
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cisions about live renal donation moved in a landscape that was vastly different from the one with which I was familiar in the United States. The remainder of this chapter employs narratives from donors and recipients to shed light on the functioning of kinship systems within the realm of renal transplantation under three broad headings. The ¤rst consists of stories of willing donors within close-knit, extended families and cultural and religious values that in®uence decisions to donate. In the next section I consider the dark side of hierarchical family systems and the inherent risks within them for vulnerable members, especially those who are economically dependant on others. The third segment deals with certain magico-religious beliefs laypeople use to make sense of renal disease and organ donation, and the social realities of Pakistani life that constitute major hurdles for the staff in their quest to persuade family members to donate a kidney. Those Who Donate: Language, Text, and Context
Many individuals I interviewed were members of large extended families living under one roof and pooling their resources for survival. What was frequently at stake, therefore, was not merely the life-threatening illness of one family member, perhaps one of the primary breadwinners or the mother and caretaker of several children, but also repercussions for the family from potential risks to another family member who underwent donor nephrectomy. In many cases there was reluctance, on the part of women and men alike, to allow a male to donate a kidney when the family was heavily dependent on that male for its livelihood. A practical consideration of what was in the interest of the combined family rather than love for the recipient (which was undoubtedly part of the equation) seemed to lie behind many decisions about who should donate a kidney. Many families I interviewed were caught in what Kleinman describes as “a network of relations, memories, current pressures . . . and constrained by interconnections and shared fate,” and faced a situation in which the choice of who donated could profoundly affect the well-being of many.21 The emotions of love and distress for the suffering of kin, sensed
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and expressed, were no different from families anywhere in the world. Yet it was a contextual orientation of morality that seemed to lie behind decisions to donate a kidney; the language employed to express this was generally down-to-earth, even stark at times. The act of donating a kidney was prosaically referred to as gurda daina (“giving” a kidney) or gurda badalna (“changing” a kidney) by patients, families, and professional staff alike. During my months in the Institute I heard no Urdu word used that connoted the essence of altruism or the act as “donating” or “gifting.” Neither did I hear words or terms equivalent to the freedom to make a choice or a right to donate or refuse to donate. What dominated instead were cultural and religious idioms of family obligations and duties toward kindred, sprinkled at times with a desire to please God and be rewarded in the hereafter. The word mohabbat (love) of the donor for the recipient made an appearance in the case of siblings but almost never among spouses (based on norms of cultural reticence). The reasons far more likely to be offered for giving a kidney to kin included farz (duty, obligation), apna khoon (my ®esh and blood), or sawab (reward from God for an act that meets His approval). Donating a kidney was occasionally referred to as a qurbani (sacri¤ce), acknowledging the extraordinariness of the act, yet nevertheless it was still perceived as obligatory rather than supererogatory in view of the threat to the survival of the family. A common thread weaving through the narratives, be they from the rich or poor, educated or illiterate, rural or urban dwellers, was the invocation of the all-powerful, alldetermining Allah. It was His personal involvement and His promised rewards to those who carried out obligations towards kin that was quoted by many as providing the strength to go through with the donor nephrectomy.22 Hanifa
I interviewed portly Hanifa, an unmarried woman in her midthirties when she came to the donor clinic for a routine follow-up. She had donated a kidney to her younger brother a year earlier. Belonging to a traditional family from Punjab, Hanifa was in hijab (hair covered with a scarf and a loose cloak over her clothes) and accompanied by her two bearded, older brothers. She was talkative
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and con¤dent with an easy laugh as I interviewed her alone in a room connected to the donor clinic. The large family living together in one house consisted of an elderly, disabled father, three brothers with their wives with a total of three children among them, and Hanifa, the only unmarried sibling. Three married sisters lived with their spouses and in-laws. Hanifa told me that marriages in her family were generally “arranged” by parents. Hanifa had completed high school and prior to her donor nephrectomy had worked for six years as a teacher in a primary school in a village; she took a bus and then walked some distance to get there. She hoped to be able to resume teaching one day, saying that she had enjoyed her job even though it did not pay much. She equated teaching with the work of the physicians in the Institute, stating that both for doctors and teachers, “Allah ta’la say muajizah milta hay [The reward lies in the hands of Allah almighty].” I asked her how the decision was made by her and the family that she should be the donor for her brother, and whether anyone else had offered to give a kidney. As soon as I found out that my brother needed a kidney, I told my family right away that I will give my kidney. My brothers wanted to give. They said that people will say that the brothers peechhey ho gayey [stepped back, did not wish to donate], and it was the sister who gave a kidney. But I made my decision bohat soch samajh key [after a great deal of thought and deliberation]. One brother was sick already and now another one [who would donate] would be too. I am unmarried, and saree family mujhey sambhalney key liyay mojood hay [my entire family is there to take care of me, support me]. If one of my brothers gives a kidney, it will “disturb” the whole family. They are supporting ten to twelve people. They have children. Who will support them? Also our father has to be taken care of. Sisters have a narm gosha [soft corner in the heart] for their brothers. . . . And besides, my sistersin-law could think that their husbands had done aik quisum kaa ehsan [a kind of big favor] if they [the brothers] gave a kidney. But for me it was not a question of favor.
Knowing the staff ’s reluctance to take a kidney from an unmarried woman, I asked Hanifa if this issue had been raised with her family. She admitted that one of her brothers who had accompanied
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her to the Institute had been asked to donate. She said that she told the physicians that he had recently hurt his shoulder and could not give a kidney. When she returned home Hanifa forbade her brothers from any further talk of their donating but felt that she needed further support for her decision. I then spoke to my oldest behnoee [husband of the oldest sister] who is considered hamarey barey [an “elder” of the family]. I told him that it was my wish to give, and that my brothers have to take care of their children, and Abu [our father] has to be looked after. And then I also spoke to [and convinced] my father.
I asked Hanifa if she had been afraid to give her kidney. She replied in the negative and elaborated. I went to see this Allah Walla Banda [man of Allah] called Babaji [a respectful term for an old man], and he told me that I should say my prayers ¤ve times a day, which I already do, and what to recite from the Qur’an as many times as I could. So I would recite this verse all the time . . . even while I was having my tests done [as a donor]. And the day before my test I would know that it would be ¤ne [that she would be found suitable as a donor]. I also recited the verses all the while I was having my angiogram done. The doctor asked me what I was reciting, and when I told him he said, “Khuda kay kalam may bohat barkat hotee hay [The word of Allah has great power, blessing].”
I asked if since donating a kidney she had noticed any change in the way her family dealt with her. Hanifa smiled and said with a twinkle in her eye, “Yes, pehley say ziyada khiyal rakhtey hein [they take much more care of me now, pay me more attention]. Whenever my sisters-in-law go anywhere now, like to the bazaar for shopping, they always say you must come with us.” Hanifa’s decision to donate was based on her rational assessment of many factors. There was no doubt that she loved her brother, but the major factor in her decision appeared to be a pragmatic evaluation of the ¤nancial effects on the large family if a second male breadwinner (the ¤rst being her brother in renal failure) was to be
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disabled for any length of time. Her own ¤nancial contributions as a teacher were insubstantial to support the family, and she told me that a large part of her earnings had gone toward the cost of her transport to work. To prevent any objections to her decision from others, she utilized accepted family dynamics in Pakistan, an approach to the “elders” or buzurgs (the older and thus wiser members of the family) who generally hold the ¤nal decision-making power in such families. The elders of the family, or daree-wallas (the bearded ones) as they were referred to by some, are respected by family members, and their advice and intervention are actively sought when family members are faced with making dif¤cult decisions. In many families, particularly from the tribal areas of Pakistan, it is frequently the elders who make decisions about who should donate. Based on this fact, family members occasionally mentioned to me their disagreement, generally never openly voiced, with the staff ’s belief that single women have dif¤culty getting married after donor nephrectomy. I was told that if it is decided by the buzurgs of the family that an unmarried woman should donate, then this meant that they will also take the moral responsibility to ensure that a suitable match is arranged for her following the donation. The concern of Hanifa’s brothers (which she seemed to share) about the light in which they would be seen, how it would “appear” to others, if a sister donated rather than one of them is not an uncommon event in cultures that are collectivistic rather than individualistic in nature, and in which family reputation in the community carries great weight. Hanifa informed me that her donating a kidney was not publicized, perhaps to avoid any criticism of the family and especially of her brothers. Her statement that kidney donation by one of her brothers rather than her would have been construed as ehsan (a big favor) by their wives may be a re®ection of tensions that are not uncommon within joint family systems in which (unmarried) daughters of the house and daughters-in-law reside under one roof. Another reason behind Hanifa’s contention may have been cultural and social norms in which the primary and central role of men is seen as toiling in the outside world as breadwinners to support the
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family unit. (The norms of gender-segregated roles between the “outside” and “inside” domains are discussed later in this chapter.) Donating a kidney then could be construed as an additional responsibility, a “favor,” especially in the eyes of the brothers’ wives. It was common knowledge among staff of the Institute, related to me with considerable amusement, that males who donated kidneys were often pampered for weeks by female members of the family (with specially prepared meals, extra milk and eggs for breakfast) so they would not become “weak.” Following my interview with this assertive woman I was left with the impression that love for her brother played a role in her decision to donate a kidney but that it was also based on an objective, practical review of what would bene¤t the large interdependent family as a whole. Of no less importance was the fact that with this act Hanifa had also raised her status and power among family members and particularly so where her sisters-in-law were concerned. Shehzad
I met thirty-¤ve-year-old Shehzad in one of the pre-transplant clinics when he arrived to be tissue-typed as a donor for his oldest brother. He was a bright, articulate, slightly built man with a neat, close-cropped beard. He told me that he was unmarried and worked in a government of¤ce in the city. He belonged to a middle-class extended family living under one roof and consisting of his elderly parents and seven adult siblings. Among the siblings were two married brothers (one of whom was the patient) who had children. The oldest sister was married and resided with her husband and in-laws. All brothers holding jobs (the youngest two were still students) pooled their earnings to help run the household. I asked Shehzad how it was decided that he should be the one to donate a kidney. He said that everybody was ready to give a kidney, but “I was ready ¤rst.” The parents were considered medically un¤t to donate by the staff. Shehzad told me, “My sister also wanted to give her kidney, but she is auratzad [a female]. I am a male, and men are mazboot [stronger] so they must be ready for qurbani [sacri¤ce] ¤rst.” He added that his oldest sister had also stated that if the younger sister, who was single, gave a kidney, it would produce prob-
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lems in her getting married later. I asked Shehzad what his reasons were for giving a kidney to his brother. One has qudrati mohabbat [natural love] for family. Giving a kidney is baree cheez [a major act], but this love drives out the fear. Mujhey Khuda pay iman hay [I have faith, belief, in Khuda], and He has life and death in His hands. This is a matter of sawab [best translated as a reward for something God likes]. He likes us to do this, and this brings us ajar [blessing, reward from God].
As Shehzad had completed college and sprinkled his conversation with English words, I told him that in many Western countries the donated kidney was referred to as a gift. (I used both the English word and its Urdu equivalent, tuhfah). Did he consider his kidney to be a gift to his brother? Shehzad thought for a few moments and then said that this was achhee cheez (a good thing) in the West, and perhaps his kidney could be considered as a gift, but “the asal [real, primary, true] factor is to save the life of my brother. He is married and has a small child.”23 In this perhaps more af®uent family than that of Hanifa and with several income-earning members, it was a younger brother of the patient who stepped forward to give his kidney. There was a sense of machismo and the bravado of a young male in his rejection of the sister as a donor, but this was probably also tinged with the family’s concern that it would make it dif¤cult for her to get married following a nephrectomy. I do not believe that Shehzad was able to conceptualize his kidney donation as a “gift” to his brother, at least not in the way it has come to be used metaphorically in the West. Perhaps he felt that there was a sense of choice in giving a gift—one can choose to give a gift or withhold it; for Shehzad this was not the case when it came to donating a kidney to his brother. His immediate decision to donate a kidney was akin to the “instantaneous decision” that Simmons and her colleagues note about some of the donors in their study conducted in the United States. But while one of the reasons Shehzad gave for donating to his brother was love for him, his narrative revealed a strong sense of religious obligations toward the family as expected by God. And like
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Hanifa, his belief in God was a dominant theme in Shehzad’s story, the element that provided him the courage to make the decision. Furthermore, the “bene¤ts” he mentioned for himself in donating a kidney were voiced not as an increase in self-esteem or a greater emotional closeness to his brother but rather being rewarded by God either here or in the next world. Zakia
I met Zakia, a pale ¤fteen-year-old girl in renal failure and on hemodialysis for about four months, and her scrawny, white-haired father in one of the pre-transplant clinics. They were from a village several miles away from the Institute. She sat silently in one of the cubicles, her head covered with a dupatta (large scarf ). As I spoke with her father, who had just been informed that she needed a kidney, she sat motionless with her eyes ¤xed on the ground, and she responded reluctantly to my questions. She was the third of six daughters (the two oldest were married) in a family with no sons. I learned from the father that the mother was recovering from her last delivery via a Cesarean section two months previously and a subsequent hysterectomy to control post-partum hemorrhage. He said that she was now well and was willing to give a kidney to her daughter. My own medical concern about the mother’s recent delivery and surgery led me to ask Zakia’s father whether he had thought of donating his kidney instead of his wife. He told me that he worked as a chowkidar [guard] and gardener in the house of a physician and that until recently Zakia, the oldest child living at home, had augmented the family’s income by working as a maid in the same household. Since her illness, however, she had been unable to do so. Doctor sahib, Allah has not given me a son. In ko kon daikhey gaa [Who will look after them, the family]? I am the only one who can earn money now. The mother is in the house. Mein us ko khila sakta hun, wo mujhko nahin khila sakti hey [I can feed her, she cannot feed me]. There is no larka [boy, son], and the larkian [girls, daughters] have to be fed and taken care of.
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When I raised my concern about the mother as a donor with Dr. Badar, he said that he had asked the man to bring his wife to the clinic for tests next week. “It will take us at least six weeks to get all the investigations done,” he said. “By that time she will be all right.” He added that he had also suggested to the father that he contact Zakia’s married sisters, who lived in the village, and ask them to donate, but he felt that there was no surety that their husbands would allow them to do so. There was thus no option for saving Zakia’s life other than the mother agreeing to give her a kidney. I completed my research and left without learning what ¤nally transpired with Zakia. Did her father manage to bring the mother to the clinic (large numbers of patients do not return for follow-up), and did she agree to give Zakia her kidney? Did the staff decide that she was medically “all right” to donate? And if she did donate her kidney to her daughter, what measures of love, obligations, and absence of options went into formulating her decision? One thing was clear whatever the outcome of the case may have been—it would have been dif¤cult to imagine anyone in this family as autonomously exercising a right to make free choices in life. In the matter of decisions about donating a kidney to kin, the terrain the patients and families of the Institute traverse, the language they speak, the beliefs and values they emphasize, and the bene¤ts they hope to reap are deeply contextualized constructs of a human world that differs in signi¤cant ways from the more familiar images of renal transplantation systems in many Western societies. Vulnerable Members: The Dark Face of Extended Families
Traditional family structure in Pakistan, cutting across all social strata, is patrilineal and hierarchical and demarcates responsibilities and roles of members along gender lines. This can be traced to cultural norms and religious beliefs but perhaps also to the socioeconomic realities of a poor country with high rates of illiteracy (particularly in females) and unemployment. Multigenerational extended families must therefore often pool efforts and resources for
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survival. Domains with gender-speci¤c roles and responsibilities are social norms, with the bahir (outside) reserved for males, whose primary function is seen as earning a livelihood, and the ghar/undar (home/inside) for females, who tend to matters of the combined household. Cultures being dynamic rather than stationary over time, this absolute division of domains and duties is being questioned and is beginning to shift in some quarters, but this remains the reality of life for most Pakistanis. Moreover, it is one still endorsed by a majority of the populace, men and women alike. Gender-speci¤c roles for women and men cannot be seen as merely external imposition of one segment of the society over another. An understanding that men are the providers and managers of the external realm and women are the child bearers and maintainers of the internal realm rests on and is supported by the conviction of a large number of both sexes based on cultural but also religious grounds. Both genders draw a sense of self-worth and power through these roles, often guarding them jealously against perceived interference. While men acquire authority through bringing home money to support the family, women derive considerable power as revered mothers of adult, particularly male, offspring. Economics and in®ation are resulting in increasing numbers of women working “outside,” but in the opinion of many (of both genders) this remains their secondary, and not entirely desirable, role. In poor and rural classes women have always worked in the ¤elds with their men folk, but with upward mobility into the middle and upper middle classes it is considered a matter of honor and pride for the family if female members do no have to work to improve the ¤nancial situation. This traditional family structure and gender-speci¤c roles were very much in evidence in the Institute, displaying at times the strengths and support of interdependent families and in other instances the sinister face of such systems. In the case of many closeknit families, such as depicted in the narrative of Hanifa, decisions about who should donate a kidney often involved discussions, negotiations, and compromises among members, with the elders often playing a decisive role to maximize bene¤ts and minimize risks for the family. The concept of “inside-outside” realms with males in the
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role of primary breadwinners for large families frequently lay behind decisions by female members to willingly donate a kidney to kin. In a family I interviewed (representative of many others with whom I spoke), the donor sister told me that all the sisters had united to decide that one of them should give the kidney rather than one of the brothers. “We told them tum bahir mazdoori aur wazan kaa kaam kartey ho [you have to do labor outside, lift heavy stuff ] but hum aurtain ghar may hotee hein [we women are inside the home]. We will give the kidney.” In other cases, brothers and fathers donated kidneys instead of a willing unmarried sister or daughter of the family due to family concerns that donation by them would jeopardize their future chances for marriage, that it would prevent them from assuming their primary “inside” roles as wives and mothers in the future. But this supportive, nurturing role of the family toward its members was not always the case. In many instances I observed the ugly aspect of the Janus face of extended families. Women locked into the “inside” domain and vulnerable due to their economic dependence on others were at signi¤cant risk for exploitation in the face of family decision making. Elders and other powerful members within the family were willing to sacri¤ce the wishes and interests of vulnerable members, often females, for the bene¤t of a male or the larger family unit. I observed cases in which women with little recourse to protest were pressurized, overtly or covertly, or even deceived at times; their family brought them to the clinic and told the staff that they were willing to donate a kidney. It was in some of these cases that I came to appreciate the gatekeeping role that the staff, specially the females, played in the Institute to protect women whom they perceived as being coerced into donating. In my opinion, this was the key behind the equal ratio of male and female donors I saw in the Institute instead of the preponderance of females revealed in surveys from other parts of the world. Chandnee
In one of the pre-transplant clinics I was approached by Dr. Fatima, the female nephrologist, and told, “You have to see this case,
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Dr. Moazam.” She said that a young man called Zahoor from a small village in Sindh was in the clinic with his family, including his wife, Chandnee, who was said to be ready and willing to donate her kidney to him. Dr. Fatima had told the family during a previous clinic visit that the wife was too young to donate a kidney, and she told me with anger in her voice, “so now they have brought her back today with her baby in her lap just to prove to me that she is old enough to donate.” I walked back with her to the cubicle. Zahoor, a young, unshaven man in his mid-twenties, was sitting on the examining table. Next to him sat a pretty girl, Chandnee (meaning “silver” in Urdu), his wife, with a chubby infant in her lap. There was no way to con¤rm her age (not unusual in Pakistan, where few people have birth certi¤cates), but having taken care of children and adolescents for many years, I thought that she was in her teens, at best sixteen years old. Next to Chandnee and also perched on the table was a sturdy, gray-haired woman who I learned was the patient’s maternal aunt. The patient’s brother, a Sindhi cap on his head, stood at one end of the cubicle. He appeared the most ®uent in Urdu, and most of Dr. Fatima’s conversation took place with him. She said to the patient, “You have three brothers. We had asked you to bring them with you for testing. Where are they?” The patient’s brother said that he had asked them to come, but “their wives are forbidding them from coming. What can I do?” The nephrologist said scathingly, “If your brothers want to take second wives, will they get permission from their wives ¤rst?” The brother hesitated and then said, “They have to work in the ¤elds. It is very sakht kaam [hard work, strenuous labor].” Dr. Fatima responded, “I have told you that his wife is too young for us to take a kidney, and that khala [maternal aunt] you have brought today is too old.” The brother protested that the aunt was very strong. “She is stronger than the young women in the family,” he said. I saw Dr. Fatima write something in the patient’s chart, and then she walked out of the cubicle with a disgusted look on her face. I looked at the three people sitting on the examining table. The aunt’s face was impassive, and the patient Zahoor seemed unconcerned at what was happening. Chandnee was playing with the child
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in her lap, smiling at him and stroking his hands. I wondered how much she had understood of the interchange that had just taken place; she seemed oblivious of the tension in the cubicle. I asked the aunt in Urdu how long the couple had been married. She must have understood me because she smiled and held up three ¤ngers even as the patient’s brother said, “Three years.” I asked him how old the child was, and he said that the baby was nine months old and that Zahoor and Chandnee were cousins. I approached Chandnee, placed my hand on her knee and asked if she spoke Urdu. She smiled broadly at me but nodded in the negative. I felt that she meant that she understood some Urdu even if she could not speak the language. When I asked her name and that of her child, she was able to respond. “Chandnee, Javaid,” she said. I asked her if she knew what was wrong with her husband and heard her aunt whisper to her in Sindhi (which I was able to understand) that his kidneys were bad. Chandnee smiled at me and said in halting Urdu, “Gurda kharab [His kidneys are bad].” I told the aunt that I did not want her to prompt Chandnee again. I asked Chandnee whether one or both kidneys were bad, and even as the brother said, “She does not understand you. She is giving her kidney khushee say [willingly, happily],” Chandnee held up two ¤ngers and said, “Doa [two].” The delighted look on her face reminded me of a child playing at a game. I inquired if she knew what the treatment was for her husband. This time her husband whispered to her, “Gurda badalee [Changing the kidney, the colloquial expression for kidney transplant].” As I told the husband that I had heard his prompting, she repeated what her husband had said. I asked her if she knew why she had come to the hospital. Still smiling at me she said nothing. There was no prompting this time, and I was not sure if she had understood me. I addressed the group in general now and asked whether they had told Chandnee why she had been brought to the hospital. Out of the corner of my eye I saw the aunt nod a no, while the brother said again, “She has come khushee say.” When I told him that his aunt had just said no, he said dismissively, “She doesn’t know anything. She is a junglee [from the jungle, ignorant].” By now I was certain that Chandnee had been brought to the
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hospital with little if any explanation that she was to be tested as a kidney donor for her husband. What remained unknown to me was whether she would be willing to donate her kidney if she was provided information about the gravity of her husband’s illness. What was evident to me was that despite three potential male donors in the family, siblings who may prove to be better “matches” (due to closer genetic tissue match as well as possessing a more suitable kidney size for Zahoor), the family had turned to a member whose position on the lower rungs of the extended family ladder as a wife, and perhaps also due to her youth, made her least liable to resist family pressures. What I found interesting was the approach of Dr. Fatima, who had obviously arrived at the same conclusion that I had. Against what she perceived as gross injustice grounded in the androcentric, hierarchical nature of the family over a vulnerable member she had brought into action her own culturally sanctioned authority as a physician. Above her signature in the patient’s chart she had written, “Wife too young. Unsuitable to donate a kidney.” As I left the cubicle, I saw a male resident walk in to try to convince the family to bring one of the brothers to the clinic for testing. Minkha
Minkha was a forty-six-year-old Pathan woman, on dialysis for almost a year in the Institute when I met her. She was accompanied by her husband, who, unlike Minkha, could understand and speak Urdu and therefore served as the interpreter and spokesman for her. The large family lived in one of the poorest sections of Karachi and included two unmarried daughters and ¤ve unmarried sons. The husband described them as ranging “from ¤ve years to jawan [adults],” without ever being able to tell me their exact ages even after consulting with his wife. The family was desperately poor. The husband drove a “wagon” (a small van) used for public transportation, one of the adult sons sold small goods from a pushcart, and another did odd jobs whenever he could ¤nd one. The frustrated staff had been unable for several weeks to convince the husband to bring in one of the adult sons to be checked as a donor for the mother or to locate someone else in the family.
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Soon after I met with the couple I realized that using the husband as the interpreter to communicate with Minkha, who neither understood nor spoke Urdu, was a fruitless task. The husband ended up answering all my questions himself without consulting Minkha. After locating another interpreter, I asked Minkha what her problem was, and she informed me that she suffered from pain in her abdomen and her legs. On further questioning, I found to my surprise that she was neither aware of the serious problem with her kidneys nor the fact that she needed a transplant. It seemed that I was not the only one having dif¤culties using her husband as means of communication with Minkha. After explaining to her as best as I could the nature of her illness and the suggested therapy for it, I asked the husband who he thought could be a possible donor for her. He said that Minkha’s brothers were married, had several children each, and had refused to come to the clinic to speak with the doctors. Her one sister, a widow with children, lived with her in-laws and, he said, would not be allowed to donate a kidney. I veri¤ed this with Minkha through the interpreter. I then inquired about their adult sons. The husband demurred, stating that both were very kamzor [weak] and had to do hard work; in fact, one had frequent fainting spells. I asked the husband if he had considered donating his kidney to his wife. He replied that he had already spent a lot of money on Minkha’s treatment and that if he stopped working there would be no money to feed the family. He then informed me that he had located a paternal cousin of hers who lived in Karachi, and he was trying to bring her in to be tested as a donor. In fact, she was to have accompanied him today to the clinic but didn’t because “Wo ghabrata hay, daar gaya [She became anxious, worried, and afraid].” When I asked him to tell me more about this woman, he said that she had developed tang kaa falij (paralysis of the leg) in childhood, was married at a young age, could bear no children, and so was sent back to live with her parents. Her husband meanwhile had married another woman. After con¤rming all this with Minkha, I asked her husband why he thought this cousin would be ready to give her kidney. He said, “Us kaa koee bacha nahin hay. Ghar baitha rehta hay [She has no
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children. She just sits around at home]. She is just afraid. May us ko kisee tara bahaney say lay kay ajaey gaa [I will bring her to the hospital by using some kind of excuse].” Around this time Ms. Azra, the social worker, walked into the cubicle and asked me what I had found out in my interview of Minkha and her husband. When I gave her a synopsis of what I had learned, she turned to the husband, indignation written large on her face. She said, “You Pathan men are all the same. If she dies you will get another wife. I want you to get your blood tested next week so you can give a kidney to her.” As the couple left the clinic I had serious doubts whether these instructions would be followed; I also did not believe that Minkha would in the near future, if ever, get a kidney transplant. Pathans are originally from the North-West Frontier Province (NWFP) of Pakistan, but many immigrate to cities, especially Karachi, in search of jobs. Currently in Karachi, drivers of public transportation vehicles such as buses and vans are predominantly Pathans. Tribal in nature, Pathan society is well known for its extreme androcentricity and strict segregation of women; NWFP continues to have one of the lowest female literacy rates in the country. Akber Ahmed conducted ¤eldwork among tribal Pukhtun (colloquially referred to as Pathans) several years ago. In his analysis of gender relations in that society he mentions that a Pathan proverb limits the woman to one of two places—either the kor/ghar (the house/inside domain) or the gor (the grave). In the Pakhtunwali (Code) of the Pathans, women are “conceptualized as forming two opposite and polar models.” One pole consists of the mor, which represents the chaste mother, while the other is tor (literally, black as in evil) and signi¤es a woman whose “chastity has been compromised” in some way. Curiously, Ahmed writes that “the most fanatic supporters” of this code are the Pathan women. It is dif¤cult to know what to make of this statement as his interviews, as Ahmed himself admits, were limited (due to rigid segregation of sexes in the province) to Pathan males.24 My own interviews with several Pathan women in the Institute con¤rm their sense of powerlessness and unhappiness at the circumscribed nature of their lives. None, however, verbalized a support for the status quo; all were critical of the attitude of their men.
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The case of Minkha, a Pathan woman, con¤rmed the vulnerability of women, married, widowed or divorced, in certain segments of Pakistani society. Minkha was a woman without a voice, without opinions, and without choices. She seemed no more than an appendage of her husband, and even her illness was not hers to name, understand, or deal with; only her suffering seemed entirely hers. Meanwhile her female cousin, equally captive to the “inner” domain of women, had even more strikes against her. With no husband, no children, and living with the “shame” of women who are banished from their married ghar (house), she suffered from handicaps that were far more profound than her paralyzed leg. In hierarchical, extremely male-dominated extended families that see the primary, and perhaps only, function and value of women as wives and bearers of children, this woman had failed on all accounts; she had been reduced to an entity lacking identity, substance, and history. It was in this background, then, that Minkha’s husband found it incomprehensible that the cousin should not serve as donor for another in the family who was seen as being in a (slightly) higher pecking order, his wife and the mother of his children. In this reasoning, by donating her kidney the cousin could be at least of some use to the interest of the larger family. The Reluctance to Donate
Raised in a Pakistani family in which religious and cultural values of obligations to kin were repeatedly emphasized, I was surprised to discover family reluctance to donate a kidney and to note the many ways in which staff efforts to ¤nd a donor were thwarted. Due to norms of respect for authority and acceptance of hierarchical systems, family members avoided direct confrontations with healthcare professionals and did not openly refuse to donate. The approach was indirect and veiled: use of elaborate “excuses” by potential donors in which the patient and other family members sometimes colluded, failure to show up for clinic appointments, or at other times, as termed by the staff, ghaib ho jana (disappearing) after donor testing had been initiated. Based on clinical experience and review of the data, the staff has attempted to understand reasons behind the reluc-
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tance to donate. Their studies, quantitative and relying on retrospectively analyzed data, nevertheless provided some insight into factors responsible for the recalcitrance of certain families.25 Broadly, these studies reveal that patients presenting to the Institute generally have large families, but 19 percent of those approached for a kidney indicate an “unwillingness to donate due to fear of surgery.” Another 17 percent are lost as donors due to what is listed as “refusal by the family.” “Social reasons” are also quoted for refusals and include factors such as a potential donor being the breadwinner and obstruction by in-laws, but these are not elaborated upon. What is also striking is that among willing donors one-third are eliminated due to medical conditions, especially hypertension and diabetes mellitus, conditions that were diagnosed for the ¤rst time when they are examined in the Institute. (This ¤nding was con¤rmed by my own observations.) In my interviews I probed the “social reasons” reported by the staff. There are two related and often overlapping clusters of reasons due to which I believe the staff face stiff resistance from the family in helping to identify a donor. In some cases these factors result in delays of weeks or months before a donor nephrectomy can be undertaken; in others they conclusively defeat every attempt of the staff to enlist a donor. The ¤rst set of reasons is related to a disjunction between the medical staff ’s scienti¤c, factual “knowledge” of renal failure and its management, and the magico-religious “beliefs” that patients and their families employ to make sense of a life-threatening illness of kin.26 Many interpret and shape their understanding of end-stage renal disease in signi¤cantly different ways from the scienti¤c approach of healthcare professionals to this disease. Accordingly, desperate families often turn to alternative, “non-medical” modes of treatment, something that is seldom reported to the staff but suspected by many of them. The second cluster of reasons behind the reluctance to donate, and often overlapping with the ¤rst, is more mundane: a deathly fear of hospitals and any form of surgery. Admission to a hospital is seen by many as a harbinger of impending death. I found this fear compounded by anxieties about the effect of donor nephrectomy on gen-
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eral health and especially on sexual and reproductive functions. These are seen as carrying with them long-term repercussions for the donor including reduced chances for marriage. Interface of Scienti¤c “Knowledge” and Lay “Beliefs”
Medical sociologists and anthropologists describe a specialized “medical culture,” de¤ning it as a system with a distinct epistemology and hermeneutics and a language that carries its own vision of reality. It involves a way of seeing, writing, and speaking that places biology at the center and everything else in the periphery. Disease is seen as residing in pathology affecting organs and systems, and the “diagnosis and therapy focus an exclusive gaze upon the individual body,” with biology seemingly autonomous from subjective experience. According to Byron Good, in such a biologically focused medical gaze diseases are considered “universal biological or psychosocial entities that ultimately transcend social and cultural context.”27 Scienti¤c, secular, and rational medical “knowledge” arrived at empirically is seen as depicting reality and is largely assumed to be normative. It is a system that diverges in essential ways from the living and experiential reality of patients and their families. When considering lay “beliefs” regarding illnesses that are frequently grounded in culture and religion, medical practitioners are liable to perceive these as signifying no more than irrational opinions and presuppositions, merely erratic views that lack the certainty of knowledge.28 Events such as major illness, suffering, and death are universal experiences of all humans. But how people ¤nd meaning and make sense of these and then deal with them are reconstructed within local contexts, through the lived experiences of people in ways that can transcend the factual, rei¤ed world of medical science and technology. While discussing pain and chronic illnesses, Kleinman notes the importance of “microcontexts of daily life” in in®uencing how patients see and interpret events and how these can reach beyond the purely “scienti¤c.”29 Shared beliefs, a form of collective knowledge, historically and culturally constructed over generations, can also serve as coping mechanisms for the chaos brought on by serious ill-
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ness. In doing so, they fashion a particular vision of reality to make sense of the incomprehensible but in a way and form that con®ict with views of medical science. Healthcare professionals in the Institute, products and utilizers par excellence of Pakistani cultural norms in their quest for donors, nevertheless shift into the other culture to which they also belong, the medical culture, when it comes to their understanding of the “reality” of end-stage renal failure. To them, as to their counterparts in the West, it is a disease, a biological entity which is caused by factors that have been empirically and scienti¤cally determined and which targets speci¤c organs, ¤rst the kidneys and then others, in the human body. Moreover, science and medical experience consider dialysis as a temporizing measure and renal transplantation as the de¤nitive management of this disease. This certainty of scienti¤c knowledge interfaces with belief systems of Pakistani patients and families in which medical science, although not rejected, is not seen as the only guide to make sense of and handle what has befallen the family. For many, the disease is not understood as a linear progression of concretely grasped cause and effects in biological terms. In a traditional society deeply held views that cut across all social strata include beliefs that God is omnipotent and omniscient and the controller of human destiny and that for a Muslim no activity in life can be considered entirely secular. There is a strong sense of a higher cosmic order not fully understandable by the human mind or explainable through science. In this view, physicians are revered as instruments of God’s mercy on earth, but in the ¤nal analysis shifa (health, remedy, cure) and taqdir or kismet (fate) lie in His hands. All major events from womb to tomb—birth, illness, and death—are considered as having religious and spiritual connotations even if one recognizes their profane and mundane components. Each is often dealt with on both levels. Birth may take place in the hospital or with the help of a midwife, but there are religious rituals, such as the adhan (recitation of the call to prayer) whispered in the ear of the newborn, which must also be observed. Severe illness may require hospitalization, but many families will also recite verses from the Qur’an and give sadqa (money to the poor) as a means of asking for God’s help for the
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patient. It is therefore not surprising that these beliefs are also at play when an individual and his or her family face life-threatening illness. South Asian countries including Pakistan also have a long history and a rich heritage of alternative modes of therapy for illnesses besides biomedicine, which is a relative newcomer on the scene. These include the use of herbal, Unani, and Ayurvedic medicine, as well as Hikmat and homeopathy.30 Muslim communities, in addition, resort to “religious” modes of treatments that fall within the rubric of ruhani ilaj (spiritual therapy) and other methodologies that have been referred to historically as Prophetic Medicine and are based on the Prophet’s Hadith (recorded sayings and custom).31 Even families that rely on and can afford the latest that modern medicine has to offer will concomitantly offer communal prayers, recite select verses of the Qur’an, and perform sadqa (giving charity to the poor) and qurbani (sacri¤cing an animal) on behalf of the patient. To many, these measures bene¤t the patient spiritually and are part of holistic care; to others, they are “therapeutic” in nature in the same way that biomedicine is. Several families I met in the Institute, when asked directly, admitted to using some of these “alternative” therapies simultaneously with dialysis and sometimes even following transplant. A large number of those I interviewed resorted to the Allah-walley, the “practitioners” of ruhani ilaj, pious men (and sometimes women) who were considered close to God and who could intervene with Him on their behalf. Some of these practitioners limited themselves to providing dua (prayers and Qur’anic verses), taweez or gunda (amulets with inscribed verses of the Qur’an), or special water (over which verses from the Qur’an had been recited) for the patient to drink. Others, I learned, purported to be able to magically diagnose the disease and its underlying cause, generally considered to be an “evil eye” or a malevolent spirit, by merely gazing at the sufferer or passing their hands over the individual’s body. The popularity, which is by no means insigni¤cant, of such practitioners, who are nevertheless derided by many Muslims and almost all the physicians as charlatans, rests on not merely “faith” of the common man but also practical considerations. Compared to modern medicine and its practitioners this form of “therapy” remains
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far more accessible and affordable for desperate middle- and lowermiddle-class families snared by hope and fear at the frightening illness of a family member. The health system in Pakistan is chaotic. Public hospitals are overcrowded, understaffed, and underequipped and generally have a poor reputation, including the few that currently offer dialysis. Private hospitals, on the other hand, are well equipped and are often staffed with well-trained physicians, who work on a fee for service basis. With widespread poverty and no systems of health insurance in the country, most private institutions lie outside the reach of a vast majority of the population. Ikram and His Son Noman
Ikram was a garrulous, forty-¤ve-year-old man belonging to a large middle-class family. He had given a kidney to his oldest son about two years before I met him. He informed me that when he was asked to give his kidney, “I told the doctors, what is a kidney, you can even take my life for him.” When I spoke with Ms. Azra later about my interview with Ikram and what he had said, she informed me with a laugh that in reality Noman had been on dialysis for several months before his father had agreed to donate a kidney. He gave us a very hard time. He would not show up to meet us in the clinic when we asked him to and sometimes would not bring Noman in for the scheduled dialysis. We even threatened that we would stop the dialysis. In the end, Sir told him one day—take your son away, so he ¤nally agreed to give his kidney.
In my next meeting I probed Ikram about his perceptions of Noman’s illness and why he thought his kidneys had stopped working. Ikram needed little prompting. Noman was fat, very healthy when he was born. He weighed fourteen pounds but soon after that usko nazar lag gayee [he came under the in®uence of an evil eye]. We took him to a “holy” woman, and she gave him a taweez [amulet], and he got better. She said he became ill because my wife took him to a mot ghar [a house in which a death
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had occurred]. . . . Then two years ago he was sitting on the wall of a graveyard watching cricket, and he heard somebody call his name from the graveyard. But when he turned around there was no one there. Us pay kisee kharab cheez kaa asar ho gaya [An evil spirit got a hold of him, affected him]. Soon after that he became ill. . . . We got him a taweez and also took him to Shah Noorani’s mazar [the mausoleum of “saint” Noorani] in Balochistan and also other mazars in Karachi. . . . Bohat dua kee [We prayed a lot] and bachey key haath say bakra zibbah kiya [sacri¤ced a goat with my son’s hand on the knife], and distributed the meat to the poor.
Many aspects of Ikram’s account were to echo in the narratives of other families who I saw delaying donating a kidney to an ill relative, and sometimes just disappearing for days from the clinic, much to the frustration of the staff. During this period I would learn that many of them were exploring “alternative” therapeutic modalities including ruhani ilaj, with the hope that the transplant would not be needed. It was easy to understand, even logical, that if an illness was perceived as originating from non-physical entities, then its therapy must also be looked for in the supernatural realm. These stories always unfolded for me following direct probing; these were not accounts that were offered spontaneously to healthcare professionals by family members fully aware of their disapproval of such “unscienti¤c” measures. Ikram and his son and other families were pursuing alternative modes of therapy that seemed to them less radical, less frightening than what was being offered by the physicians. I felt that modern medicine to them constituted the last resort, to be turned to when all else had failed. It is possible that Sir’s threat was effective, but I believe that it was a dawning realization that Noman was not getting any better that turned the tide in convincing Ikram to donate his kidney. Aziza and Her Daughter Saima
I met with heavy-set, talkative Aziza, who had donated a kidney to her slightly built, shy eighteen-year-old daughter Saima around the time when I ¤rst arrived in the Institute, but only after threats
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that the daughter’s dialysis would be discontinued. In this case too, I was told disapprovingly of how it took over a year before Aziza came around to donating her kidney. Curious, I asked Aziza if she had tried other treatments for Saima prior to her transplant. She said yes, that “hum nay Qur’an kaa ilaj kiya [we treated her with the Qur’an].” Not familiar with this expression, I asked her to tell me what that involved. We were taking her to 1 hospital [a private hospital in the city] for dialysis at that time, and one day she could not see [she lost her vision]. People told us to take her to see this sayana [a wise, knowledgeable man]. He does not come in front of women so we wrote it [Saima’s loss of vision] on a piece of paper and gave it to him. He opened the Qur’an and wrote something on a piece of paper. He said put this in water and then give it to her to drink. And the light came back to Saima’s eyes at once. She said, “Ammi [Mother], I can see chingarian [sparks, spots of light] in front of my eyes.
I asked if he had said anything about Saima’s kidneys. Yes, he put one hand here [Aziza placed her hand on her chest to demonstrate] and one on her back. He said she is like my daughter. He asked me to turn away. Then he said that her kidneys theek hein [are all right], only sukhhar gaeen hein [they have shrunk a little]. He knew this without an X-ray. He told me not to do any more dialysis, or the kidneys will become bad.
So what did you decide, I asked her. She responded, “We thought that agar sirf aik taraf lagay rahein [if we pursue only one course of action, treatment], then it might not be good for Saima. So we also continued with her treatment [dialysis]. Nuksan na ho jayey is liyay ilaj bhee karaya [To avoid problems, damage, we also continued with her medical treatment].” I also learned from Aziza that following the transplant, just as she ensured that Saima regularly took the medications prescribed by the physicians in the Institute, she also made sure that her daughter continued with “the treatment of the Qur’an.” One can only speculate on the reasoning behind the family’s de-
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cision to continue, concomitantly, two diametrically opposed measures of “therapy” for Saima’s illness, particularly when the practitioners of each (if they had been told, but they were not) would consider the ministrations of the other as useless if not harmful. It was as though the family was working with the terrifying disease of their daughter at two completely dissociated levels, moving her from one world into the other and back again. What was clear was that it appeared completely commonsensical to them to be residing in, utilizing, and traversing two mutually hostile realms; for Saima’s sake, all bases, traditional and modern, physical and spiritual, had to be covered. In his discussion of parallel existing “medical systems” in India, both Western and non-Western, Khare describes how Indian patients and their families “selectively translate, negotiate or even disregard conceptual and empirical differences across widely different medical systems” in order to get well. People use a kind of “cultural logic” to forge compatibility between different medical systems with “ample room for comprehensive, internally dynamic formulation of disease, curing and healing.”32 My interviews with patients and their families in the Institute suggest that this observation is also true for Pakistan. This is not surprising as it was not until 1947 that the Indian subcontinent was partitioned into India and Pakistan, and people from both countries still share many historically shaped beliefs, customs, and practices. Malinowski refers to magic, religion, and science as a “three cornered constellation.”33 Although for him, a product of rational Enlightenment thought, science is the evolutionary epitome of the trio, yet when people are faced with dreadful situations in real life and see themselves at an impasse, all three together may serve to show the way out of the dark. This approach is not, of course, limited to “developing” countries. “Medical Pluralism” by patients and families has also been reported from modern, industrialized countries.34 To paraphrase Fox, in the “complex and subtle relations between science, medicine, religion and magic, the interplay of the rational and non-rational factors, and the signi¤cance of symbols and rituals” remain integrally entwined in human existence irrespective of how far modern medicine has advanced.35
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“Bara Operation”: Concerns about Donor Nephrectomy
Modern medical science and its technology are carving out a place within Pakistan (much more rapidly within members of Westernized, educated classes who still constitute a minority of the population), but some aspects of biomedicine are still eyed with ambivalence by many. Whereas the use (not always appropriate) of pharmaceuticals, oral and injectable, is popular and widespread in the country, treatment that involves hospitalization and surgery is still a source of dread for most people. Many equate these events with terminal illness and impending death; hospitals are where you die. High illiteracy rates prevent ready access to knowledge, and indeed “routinization” of the expanding marvels of biomedicine that has become commonplace in many industrialized countries. This ambivalence toward certain aspects of biomedicine appears to be not merely limited to laypeople in Pakistan. Two separate families informed me that their village general practitioners had discouraged them from getting a transplant, advising them that this was a very “dangerous” procedure. I found that kidney transplantation, although initiated in Pakistan in the mid-1980s, remains shrouded in mystery, misconceptions, and terror in the minds of many patients. This plays a signi¤cant part in the reluctance not only to donate a kidney but at times also to receive one. Khof (fear) was expressed for donor nephrectomy, which was referred to as a bara (big, major) operation and which was believed to cause prolonged weakness, disability, and even death of the donor. Such fear was compounded by commonly held notions of an association of human kidneys in some unclear way to sexual and reproductive functions of an individual. This led to major concerns about the adverse effects of being left with only one kidney. Donor nephrectomy was seen as leading to signi¤cant repercussions, both physically and socially. Fear of the family that the donor could be disabled or worse, in addition to the one member already ill, was often expressed as “dono mahzoor ho jaen gay [both of them will be disabled, incapacitated].” Despite reassurances by the staff that surgical interventions would
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be bene¤cial to the recipient and not harmful to the donor, this belief remained unshaken for many. A young man told me that when he informed his family that he wished to donate his kidney to his wife, they actively discouraged him. “My parents said that yay sara zindagee kaa masla hay [this is a matter of your whole life]. If you give a kidney, who will take care of the family, support your children? Bus chor do [ Just let it be]. Wo bemar hay, tum bhee khatam ho jao gay [She is sick already, you too will be ¤nished, die] if you give a kidney.” They suggested instead that he should get another wife. In this case however, the man held out against family pressure (“how can another woman take care of our children”) and donated his kidney to his wife. In other cases, however, concern of the family that donor nephrectomy would lead to the illness of yet another member was suf¤cient to thwart all attempts on the part of the staff in locating and convincing someone to donate. Curious beliefs are fairly common about the adverse effects of donor nephrectomy on sexual potency and reproductive functions; in the case of unmarried donors this is seen as reducing opportunities for getting married. Marriage, following which men assume responsibility for ¤nancial support of the family and women take on the role of homemakers and child bearers and rearers, is an important component of adult life within Muslim societies. Marital unions serve to forge new interfamilial and tribal bonds and strengthen existing ones when marriages take place between cousins. The central position of marriage in the life of men and women is emphasized through traditional writings and teachings of Islam. Sections stressing that marriage is an essential part of the life of Muslims are included in two of the most well known and respected collections of Hadith (record of sayings and practice of the Prophet Mohammad) by Muslim scholars Imam al-Bukhari (d. 870) and Imam Muslim (d. 875). Traditional Muslim texts and teachings take a practical, down-toearth approach toward marriage. The emphasis is on the contractual bond between two individuals (and their families) rather than the culmination of romantic love and courtship between a man and a woman. In Islam, marriage (and family life) is considered to be the foundation of society, necessary to maintain social order and impor-
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tant in controlling the carnal nature of humans. The Prophet is recorded as saying, “I fast and break my fast, I do sleep and I also marry women. So that who does not follow my tradition [in religion] is not from me [from among my followers].” Another Hadith states, “That who is able to marry, should marry, for that will help him lower his gaze and guard his modesty.” Although Islam does not prohibit celibacy, the Prophet is reported to have forbidden one of his followers from abstaining from marriage.36 Marriage is considered an essential part of life by most families from all strata of life. For many, one of the more pleasurable parental duties is to search for, arrange, or facilitate good rishtas (proposals, matches) for their sons and daughters. Parents consider it particularly obligatory during their lifetime to arrange suitable matches for their daughters and see them settled in their “married homes” ful¤lling their roles as wives and mothers. The concern of the staff that it is dif¤cult for a single woman to get married following donor nephrectomy is echoed, with minor variations and intensity, by families of different ethnic groups and from different provinces of Pakistan. When I asked a Pathan woman whether an unmarried female donor could get married, she replied, “Bilkul nahin [Absolutely not]. Who will marry her? They will say that she is adha insan [half a person], that she is bemar [sick, ill, not well].” Interestingly enough, she also said that the same problem could be faced by an unmarried woman who had received a transplant. She related to me the story of an unmarried woman who had acquired a transplant ¤fteen years ago, could never get married, and still lived with her brother. An educated woman from Sindh agreed that it would be dif¤cult for the female donor to get married. “She will get no proposals for marriage. People think that she will not be able to bear children, take care of the house. She will be too weak and just sit around the house.” Another woman who had received a kidney from her unmarried son responded as follows when I asked her if she would have let her unmarried daughter donate. “I would not have let her give me a kidney. People would have said yey daghee hay [she is blemished, stained, damaged], that she will not be able to have children, that she is bemar [ill].” I asked her what she would do if her daughter had
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been the only one who could donate to her. She smiled and said that even then she would not have agreed. “It is all right for me, I am an old woman now. If my daughter did not get married after us [when she and her husband were dead], who knows if her brothers would look after her.” Although I found some men who agreed with this dif¤culty faced by female donors, there were a few who felt that chances for marriage were worse for single male donors. A distinguished-looking middle-aged man from the Frontier Province who had received a kidney from his son at the insistence of the staff, rather than one from his unmarried daughter as his family had wished, told me the following during my interview with him. Mairey kunbey nay faisla kiya [My extended family, tribe elders decided] that my daughter should give the kidney. But when we came to the hospital, the doctors said that they will not take the kidney from my unmarried daughter, my son should give it. So we agreed. What could we do, we were baybus [helpless]. Doctors have to do the surgery and what they do is in our best interest. But our muashara [culture, customs] are different from here [the city]. In our rawaj [tradition] the maslaha [problem] is for the son, and not the daughter, to donate. Our daughters get married within the family, but the boy has to khandaan ko palna hota hay [support, raise, the family]. In our families the woman does gharailoo kaam [work inside the home], but the man has to do mazdoori [labor, hard physical work].
This man’s concern was related to a belief that donor nephrectomy would in some way permanently weaken the son physically, thus preventing him from the hard work that he must do to make a living and support his family. In this man’s view based on the “inside versus outside” gender-speci¤c roles, a female donor, even if less robust following surgery, could still get married within the family and shoulder the duties of her household, but a man would be unable to carry out his responsibilities adequately as breadwinner. This opinion was in marked contrast to what I heard from several women I interviewed. An intelligent, married Sindhi woman, Shameem, who had do-
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nated a kidney to her sister, had a more nuanced analysis of the dif¤culties single donors, male or female, can face. She said that they may be able to get married, sometimes with the intervention of the extended family, but in the case of women this was almost always to a divorced man or as the second wife to someone already married. Men would similarly not be able to get married except perhaps to a ghareeb larkee [an impoverished girl] instead of making a good “match.” Shameem was looking beyond the mere fact of marriage to the quality of the spouse that would be available following a donor nephrectomy. Men and women, it seemed, were both considered “damaged goods” after a nephrectomy. Nevertheless, many among the staff and families I interviewed felt that females dependent on either a family of birth or marriage, and with fewer options in life, were at greater risk than their male counterparts. In the case of unmarried male donors, the fear of becoming kamzor (weak, disabled) following donor nephrectomy was mentioned frequently. The word kamzor can be interpreted as related to both physical and sexual incapacitation, and I heard it being used in both contexts. The concern for loss of physical strength following a nephrectomy that could compromise the role as family providers was coupled with a deep anxiety related to the possibility of sexual impotence. I met Soomro, a ¤fty-year-old man from an extended family in the Sindh province who had received a kidney several years earlier from an older brother. A well-educated man with a gray moustache, he was reticent in the beginning but later spoke freely to me of what he believed were common misperceptions regarding kidney donors and recipients. He said that there were signi¤cant problems for female and male donors and recipients, but that it was specially so for unmarried women. “The problem is more for women to get married. There is also a problem if they get married. When they are newly married, larka raat ko ehtiayat nahin karta [at night the husband may not be ‘careful’ and could hurt her].” I asked him about male donors. “Many people say that both my brother [the donor] and I are adha admee [half a man]. People ask me if I still sleep with my wife. They wonder if after the transplant jinsee takat hay key nahin [whether I am sexually potent or not].” He
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told me that people thought the same thing about the jinsee takat of his brother, the donor. He then expressed, tentatively, an anxiety about his own sexual performance. “In the beginning it was all right, but now sometimes it is not.” Soomro also mentioned to me that people believed that men cannot sire sons after donating a kidney, something that I had also heard from other family members. I can only speculate whether this perception is based on a belief that the male must be more “virile” in order to sire male offspring, considered extremely important by many families within a patrilineal society, and that losing one kidney somehow affected potency. Variations on the theme of a male donor being “half a man” surfaced in other interviews. A young man who had received a kidney from his unmarried brother spoke about the family’s anxiety that if he donated his kidney, “he will become kamzor [weak; used here as a euphemism for impotent] and adhura reh jayey gaa [will become incomplete, half of himself ].” He said that it had been suggested to the family that they should ensure that the brother was “engaged” before he gave a kidney, as it would be dif¤cult to ¤nd a match for him later. The family was also advised that they not tell anyone that the young man had undergone a donor nephrectomy. Another example suggesting a belief in the connection of male virility with the kidneys was illustrated in the case of a Pathan man who donated a kidney to his wife, a relatively unusual event, after none of her siblings were found to be suitable donors. The recipient, Gul, told me about the strong opposition from her husband’s family when they found out about his decision. She related what his brothers said to her husband after he donated a kidney to her. They said to my husband, you can get another woman if she dies. Is it your responsibility to give a kidney to your wife? By doing this, hamarey nak kut gaya [you have cut our nose—the nose is symbolic of one’s honor and prestige]. Tum aurat key saath shamil ho gaya [You have now joined the ranks of women, become a woman]; don’t sit with the men. So now hum alag ho gaya [we have left, separated] from the family. This [transplant] has resulted in great mushkil [problems] for us.
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The brothers’ statements re®ected the machismo of Pathan men in which males are considered by nature to be superior to females. This was perhaps partially responsible for their anger that their brother would be willing to undergo a bara operation for the bene¤t of a woman even if she was his wife. What was interesting, however, were the statements used that implied that in doing so he had joined the category of females, that in some way he had lost his masculinity. This may have been based on their conviction that donating a kidney is a “non-masculine” act. But I believe their remarks when seen in conjunction with comments from other families may have re®ected a belief in the association of kidneys with male sexuality and potency; these had been somehow “halved” by his nephrectomy. There was insuf¤cient time and opportunities for me to explore the reasoning behind this belief. I can only speculate that perhaps as urine and semen are expelled from the same organ, the penile shaft, this may lead to an understanding that both ®uids originate in the kidneys. Loss of one kidney can then be seen as having a deleterious effect on sexual and reproductive functions. In any case, what is clear in Gul’s narrative was that because of her husband’s decision to give her a kidney, both had paid a heavy price, one that other families in the Institute are not willing to pay. Another patient, a middle-aged man called Khan, mentioned a curious worry after receiving a kidney from his daughter that re®ected yet another fear, this time among recipients of transplanted organs. After my daughter gave me her kidney some people told me that my wife was now haram [something that is strictly forbidden religiously, in this case sexual intercourse] for me. . . . I was very worried and consulted a mufti [religious jurist] in Karachi right away. He said that he would provide me a fatwa [religious opinion] in writing after two days, but I told him that I wanted an opinion right away even if it was verbal. So the mufti looked up in his books and told me that my wife was not haram for me.
This was an intriguing notion suggesting some kind of “change” in Khan with the transplantation of his daughter’s kidney that
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made previous legally and religiously permitted intercourse with his wife impermissible. He was unable to explain to me why people had believed that sexual intercourse may be forbidden because his daughter’s kidney resided in his body. Did this notion arise from the fact that the donor was a female or the fact that she was his daughter, or a combination of the two? Following the transplant was his wife haram to him because Khan was now a bit like his daughter, or due to the fact that a part of him was now female? Incest and sexual intercourse with someone of the same sex are considered sins and strictly forbidden in Islam. Fox and Swazey identify what they term as “anthropomorphization” of the donated organ in American patients, describing this as a “haunting sense” on the part of recipients that “some of the psychic and social as well as the physical qualities of the donor” have been transferred into them.37 Although this is not a concept that was brought up spontaneously in my interviews, nor one I had a chance to explore, Khan’s narrative is suggestive of a phenomenon similar to the one the authors describe. The mosaic of narratives in this chapter, structured within a template of kinships and ¤ltered through the prism of decisions around kidney donation and transplant, reveals the impossibility, and undesirability, of reducing family dynamics into a neat package entitled “Pakistani culture.” Cultures are inimical to complete analysis in the formal sense of the word and can only be “interpreted.” To quote Geertz, “there are no conclusions to be reported, only a discussion to be sustained.”38 The voices of Pakistani patients and families paint a complex landscape of moral sensibilities fashioned by culture and religion, magico-religious beliefs and socioeconomic realities, and the manner in which these de¤ne and address questions about what is good or bad, important or trivial in life. They also reveal the particularized ways in which the universal and generic term family is made speci¤c in Pakistan through local contexts that de¤ne who is family and why and determine how members must position themselves toward each other. Within the language of those who donate willingly, farz and duties toward the larger family and a sense of pleasing God appear to
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take center stage and inform decisions to donate, rather than metaphors of a “gift” which is given altruistically to a loved family member and which leads to an increase in individual self-esteem. In view of what is often at stake, a pragmatic, commonsensical orientation is generally visible in the deliberations and decisions of families and healthcare professionals about who should donate a kidney and who should not. There is an internal logic that may appear harsh or cold but is nevertheless dif¤cult to deny. The double-edged sword of family dynamics that centers on a strong sense of mutual obligations among family members can result in the empowerment of donors or objectify and exploit the most vulnerable members of the unit. As with families anywhere in the world, the tensions of dealing with life-threatening illness in kin can draw members closer or serve to loosen and even unravel bonds of family relationships. Just as it is reductive to conceive of individualistic cultures as always fragmented and uncaring, it is simplistic to consider interdependent, extended systems of kinships as absolute ideals of unity and sel®essness.
4 A Surgeon in the Field The roles that a person assumes—the ways they are de¤ned, structured, and played out—are never completely self-determined. Renee C. Fox, Experiment Perilous: Physicians and Patients Facing the Unknown
Ethnographic ¤eldwork poses the challenge of eventually producing a text that provides an intimate view of people or a community and how they construe and comprehend their lives, and yet must do so in as dispassionate a manner as possible. Geertz describes ethnographic writing as a challenge “to sound like a pilgrim and a cartographer at the same time,” transforming observations and experiences of “being there” (in the ¤eld) into a coherent and convincing account while “being here” (back in academia, among “scholars”).1 In doing so, authors perforce place their unique “signature” on the eventual text that is produced. However objectively and coolly ethnographers may wish to present their observations and analysis of what they observe in the ¤eld, these views can never be from nowhere; they are always from somewhere. Ethnographers cannot entirely divorce themselves from the ways in which their own sense of self and identity have been construed, both in their eyes and in those of others, in the years that preceded the study, and ignore the ways in which these in®uence the study.2 What researchers focus on and what they decide to leave out, how they relate to those they study and the nature of relationships they forge in the ¤eld, are all inevitably colored by the researchers’ previous life experiences, both personal and professional. In addition, intensive immersion in the community of study, the researchers’ identity, and the ways in which they “see” themselves are constantly interfacing with and modulated by how others see them and de¤ne
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their role in their daily interactions. Researchers may be participating in scienti¤c work, but ¤eldwork nevertheless remains a social endeavor. Therefore, a real understanding of the study, a validation of what is being presented and how it is interpreted, necessitates self-disclosure by the researchers to some extent, a need for “objectifying” themselves; to offer not merely re®ections on and analysis of the words and deeds of their informants but also a measure of selfre®ection and self-analysis on how these in®uenced their choices and interpretations and impacted their own notion of “self.”3 In this chapter I present relevant aspects of my personal and professional background that preceded my research in the Institute and examine the important ways in which these in®uenced my interactions. It is an account of my journeys as a surgeon moving through several streams, traveling between the diverse social and moral worlds of Pakistan, the land of my birth, upbringing, and early adulthood, and that of the United States, the country responsible for a signi¤cant part of my intellectual and professional growth. Just as much, it is a telling of my moving from the textual universality of medical science and human pathophysiology as a physician and entering as a ¤eld-worker the contextual particularities of lived lives of patients and their families. It is a description of my struggle in shifting from a life of relative certainty and control as an experienced surgeon to one as a novice ethnographer grappling with the nuances and subtleties of lives beyond the reach of medical science. A con®uence of all these factors, smooth at times and turbulent at others, served to dictate the framework of my research and in®uence my interactions. These factors were also largely responsible for the dilemmas with which I struggled during my ethnographic work. Some of my dilemmas were familiar and echoed with the experience of many other ethnographers, while others in my opinion were unique, speci¤c to the particular set of circumstances that had molded the identity I carried into the ¤eld. Being a cultural hybrid offered me many advantages but also served at times to heighten my sense of moral unease and ambivalence. The speci¤city of some of my dilemmas was not related merely to the fact that I undertook a study of a healthcare system in the country in which I was born; recent years have seen a number of “native”
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anthropologists returning to study aspects of cultures of their countries of origin.4 I believe that the uniqueness of some of my personal moral dilemmas was a direct consequence of my identity (in my eyes and in those of my informants) as an experienced surgeon undertaking ¤eldwork as a “participant observer” in a hospital where a stretched staff faced the care of an overwhelming number of destitute and very ill patients. The Making of a Surgeon
Born and raised in Pakistan, the older of two daughters of a general practitioner father and a housewife mother who had no sons, it was understood that I would follow in my father’s footsteps. Family lore has it that my father had declared sometime during my infancy, “she has the hands of a surgeon.” As a child I remember sitting in his clinic and watching as he looked after his patients. My mother, perhaps more ambivalent about the exact career I should follow, was nevertheless certain of the importance of economic independence for women. This was a message that I was to receive throughout my early years, directly and in subtle ways. My mother had aspired to be a lawyer but was thwarted in her ambitions by norms of her youth in which education for women (except in religious matters) was discouraged. Behind this lay a commonly held belief that providing a woman with a pen was equivalent to handing her a sword. After graduating from high school, and despite her protests, she was not allowed to seek admission to college. Encouraged by her mamoo (paternal uncle), who was a lawyer himself, she enrolled in a home study course in advanced Urdu reading and writing and graduated with the title of alim fazal (roughly translated as supreme scholar). She went on to become the ¤rst woman in the family to publish in the popular press. Although her short stories were listed as “¤ction,” my mother wrote about the life she saw around her, focusing on the oppressive conditions for women in society. Following her marriage, my mother turned her energies increasingly to voluntary work for the welfare of women and children. A Muslim and deeply religious, like most of my extended family, she
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was involved in numerous charity organizations (a salaried job was not an option for her) and left the house every day dressed in a loose white coat over her clothes and a dupatta (scarf ) covering her hair. She always returned in time to ensure that my father had his lunch ready when he returned from his clinic. Several of the organizations she worked with dealt with destitute women, widows or wives abandoned by their husbands and raising children on their own. Other organizations arranged education for children unable to attend regular schools (for a while my mother also taught), or supported various orphanages in the city. Conversations at the dinner table were frequently a mix of my father’s accounts of his patients and their families, some who were poor and whom he treated free or for a nominal fee, and my mother’s stories about the predicament of women and children she had come across that day. My sister and I were used to a stream of people from shantytowns in the neighborhood, some who cleaned and cooked in our house, arriving to tell my mother of the problems in their lives and to seek her help. Many of their dif¤culties were ¤nancial, but others were of a personal nature revolving around relationships with abusive husbands or insensitive in-laws, lack of resources to get a daughter married, or illness in the family (for which my father was always called in). Raised in an af®uent family, my sister and I were seldom allowed to forget how “the rest” of the people in the country lived and the obligation in Islam of privileged Muslims to help those not so fortunate in life. Despite my parents’ frequent insistence that it was my choice to do whatever I wished (within cultural and religious boundaries they set), they played a seminal role in those early years in writing the script that I would follow for the rest of my life. Another value I imbibed during childhood and adolescence, one learned particularly from my mother, was the importance of the family of origin in one’s life. My mother’s involvement with every aspect of the lives of her ¤ve siblings, all married and with children of their own, remained intense until her death. Although only two of them, a brother and a sister, had settled in Karachi, the geographical distance from the others (residing in other cities in Pakistan)
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served to strengthen rather than weaken the sibling ties. I grew up watching them when they came together, sometimes all six of them, laughing and talking late into the night. My sister and I were fed on their stories, happy and sad, about their childhood and how their love and support for each other had sustained them through adversities including dif¤cult years at the hands of a stepmother. In this background, it was understood that my sister and I, siblings sharing the same khoon (blood), must remain close, must always be there for one another. The message that we were given repeatedly was that it was siblings rather than spouses who came through for one in life, who would support you through thick and thin. I can remember few misdeeds on my part that upset my mother as much as seeing me quarrel with my sister or show a reluctance to share with her—these were unforgivable acts in my mother’s eyes. After completing medical school and a year of internship (in the same institution where I was to return for my ethnographic research three decades later), I left for the United States to complete my general surgical training and then specialize in pediatric surgery. This was in the late 1960s, an era in which many changes were taking place in America, including the resurgence of the civil rights movement, the rise of feminism and patient advocacy groups hostile to traditional authority systems, and the rapid advancement in biomedical and scienti¤c successes accompanied, paradoxically, with a creeping disillusionment with healthcare systems and research. These were also the years of the birth and evolution of bioethics as a discipline in the United States. My close to two decades in the United States were spent ¤rst as resident in general surgery and then pediatric surgery, followed by a faculty position at the University of Florida. This was the time of my maturation as medical educator, clinician, and surgeon steeped in the true “scienti¤c” tradition with a focus on the human body and its pathophysiology. It was a life that submerged me completely in the joys of being able to take care of patients and perform intricate surgery on neonates and children, knowing that their survival was dependent on my expertise. Although I visited Pakistan fre-
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quently during this period, it was a world from which I had largely disengaged, except for the strong ties I still maintained with my family. The 1980s saw my ¤rst journey back to Pakistan in the role of professor and founding chair of the department of surgery in Karachi in the ¤rst private university to be established in the country. It was an institution proudly referred to as an international university built along a North American model. The university campus, including at that time a nursing school, a medical college, and a well-equipped tertiary-level teaching hospital, was built on around eighty acres of land in an af®uent section of the city that housed large number of expatriates and the elite American School. The buildings of the private university were splendid; they were built on the lines of Moorish architecture and surrounded by lush lawns and gardens in a city where many sections face a chronic shortage of water. (Karachi is situated in the province of Sindh, most of which is a desert.) An imposing portal of dark pink marble served as entrance to the medical college, while a similar one led into the main courtyard of the hospital. Benches scattered around the campus and the hospital, and in waiting areas of the clinics, were constructed of teak and marble, as were the dustbins. Working in the university over the next ¤fteen years was an exhilarating experience, not surprising since in my leadership capacity I was involved in building something new, helping to lay the ground for the administrative structures for my department, the hospital, and the university. But equally importantly I was participating in the heady challenge of creating innovative, paradigmatic programs in medical education, the training of residents, fellows, and staff, while providing much needed clinical care in a country with a dearth of good medical colleges and hospitals. At the same time, as founding faculty member of a prestigious university, I was helping to forge links with national and international institutions. Within a relatively short period of time for a ®edgling university, the institution developed a reputation for being among the leading universities in the country providing the best medical education, residency training, and clinical care. Gradually, several of its educa-
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tional programs and systems, following an initial period of wariness and resentment, began to impact those in other institutions in the country. Admission to its medical college, faculty positions, and later its graduate and residency programs began to carry with it a sense of pride and prestige. Having left for the United States soon after my internship in Karachi, I had never really practiced as an independent physician in Pakistan. In many ways, the university eased the transition back into Pakistan for me, and many others like myself on the faculty, who had previously worked for several years in Western institutions overseas. With Pakistan’s long history of colonization by Great Britain, many aspects of its educational, health service, and political systems are deeply in®uenced by British systems. The university I worked in, on the other hand, had a board of governors drawn heavily from North American academic healthcare institutions. The organizational structure of the university, modeled on North American institutions and with an American dean of the faculty of health sciences, was familiar to many of us. All this inevitably in®uenced the essence and direction of many of the programs, educational and service, that developed in the university. We were working in a small oasis, literally and metaphorically, sheltered from the chaos and disorder that frequently characterized understaffed and overworked universities and hospitals in the public (government) sector of Pakistan. The university had a solid infrastructure and orderly systems in place with highly trained faculty, many trained in the West, and clinicians working in a well-equipped college and hospital. Clinics and operating rooms were structured in ways familiar to me. English was the accepted and common mode of communication among the faculty and students; even the junior clerical staff of the hospital, although more ®uent in Urdu, made a concentrated effort to speak in English. It was a surreal experience for me in the early days to arrive at the hospital and be greeted by clerical staff with a “good morning” instead of the Pakistani “salaam.” This was undoubtedly related to many years of a British post-colonial past, a subconscious remnant of the past reaching into a present in which ®uency in the English
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language is still largely associated with education and status irrespective of the Asian subcontinent’s own rich heritage of indigenous culture and literature rooted in Urdu and Persian. Although the university did not discriminate and, in fact, encouraged and assisted young men and women (with non-interest loans) to apply as medical students from every province and all social strata, the student body nevertheless hailed increasingly from the middle and af®uent classes of Pakistani society. The quadrangle of the medical college, teeming with many male and female students in sneakers and back packs, a few in hijab (scarves covering their hair), and everybody chattering in English, was reminiscent of scenes on many American campuses. Admission of a preponderance of such students was at least in part related to the substantial tuition fee (it was the only private university at the time, and medical tuition in government medical colleges was a pittance in comparison), and the form of the entrance examination used to screen potential medical students (multiple choice questions administered in English). This examination form was unfamiliar to many applicants coming from schools in non-urban areas where competency in English was often marginal. To its credit, the university was aware of these problems and attempted many strategies over the years, with varying degrees of success, to try to improve the diversity of its student mix. In the private teaching hospital on the campus of the university there was no “free” clinical service, but a portion of the earnings (later replaced by an endowment) was set aside as “welfare” to assist patients unable to pay for the cost of treatment. Although the amount of welfare money set aside each year was substantial, the sheer magnitude of those requiring assistance (the most indigent are often the most ill) would rapidly eat into the welfare budget provided for each department.5 As a result, although we certainly took care of a few who were indigent, the vast majority of our patients, like the students we taught, hailed from the socioeconomic middle, upper middle, and af®uent classes. Over time many of the clinical departments began rotations of residents and medical students through public clinics and hospitals, not only to forge links and hopefully impact other healthcare sys-
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tems positively, but also to provide students with exposure to illnesses that were closely related to poverty and that students were less likely to encounter in a hospital setting like ours. An underlying agenda for many of us on the faculty was to expose students and resident trainees to the “real” Pakistan. In a country with a per capita income of $480 at the time, I learned that many poor people felt intimidated in approaching a private hospital where access was gained through a magni¤cent marble arch. I can still recall the time when I remonstrated with a mother, a widow who worked as a domestic servant, for having brought her ten-year-old son in so late to see me in my clinic. He had been in renal failure for several months, and she had been taking him to various government hospitals for treatment, but without relief. When I asked her why she had not come to me when he ¤rst became ill, she looked at me and said simply that she did not know that we treated “hum jaisey log [people like us]” in this hospital. Some clinicians in the hospital routinely “wrote off ” their clinic fees, a contentious issue with hospital administration, and at times dipped into their pockets to help patients whom they saw as unable to foot the bill for their treatment. Many of us were aware of the irony that we were among the relatively few clinicians in the country with the skills and support systems to handle those most desperately ill, and yet we were accessible to only a miniscule number among them. My return to clinical life in Pakistan, in a position of authority as an administrator, educator, and surgeon with years of experience in the United States, held interesting lessons for me. It was a time of my “re-education” about a culture I had left behind and in which I had never practiced as a physician. The science and technology that I was using, my surgical skills in the operating room, and my preand post-operative acumen on the wards were no different from what I had practiced in the United States. But I rapidly realized that the world in which I was now utilizing them was vastly different. Despite the “Western” atmosphere in the university and hospital, my interactions with patients and their families perforce soon became “Pakistani.” The diseases I handled were no different, but I was to soon ¤nd
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that the larger world of the patient’s illness extended beyond the anatomy and pathology of the human body. The experiential ways in which the illness was made sense of in Pakistan, how it was handled by the patient and family members, and the cultural and religious (Muslim) values that underpinned physician-patient-family interactions and relationships were very different from what I had been used to in the United States. I had left the United States at a time when patient-physician interactions were undergoing a shift from a ¤duciary relationship to one that was more contractual and de¤ned, at least legally and theoretically, as dealings between two “equal” partners. (In the years after my return to Pakistan, the physician component of this relationship was to become even more amorphous, replaced in many cases by a faceless healthcare “system.”) Introduction to and sessions on bioethics as a discipline, with a focus on rights and autonomy of the patient, gradually were being made mandatory in medical school curriculums. Bioethics centers and universities offering undergraduate and graduate courses on various aspects of the discipline were on the increase. By the time I left for Pakistan, ethics consultations and “bioethicists” to resolve ethical dilemmas arising from disagreements between patients, families, and healthcare professionals and institutions were rapidly becoming mandatory requirements for hospitals. An important push for these changes was coming through court rulings in contentious cases.6 In contrast, I realized that although the health sector in Pakistan was waking up to the progressive globalization of bioethical principles, with its particularized language and discourse, this still remained largely at a theoretical level. Patient-physician relationships in the country marched to a very different set of values, norms that were rooted in indigenous cultural traditions, and religious beliefs rather than philosophical principles. As a physician in a society that respects authority and condones hierarchical systems I came to recognize that not only was I respected for my knowledge and skills as a surgeon and a “professor,” but I was also revered due to the privileged position that Islam accords to physicians as “instruments of God’s mercy on earth.”
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It was not uncommon for me to be told by my patients that it was God who had given shifa (power to heal) in my hands but that nevertheless it was He and not science that would control the ultimate outcome of the therapy. The patient was alhamdulillah (thanks be to God) doing well following surgery and would inshallah (if God made it so) recover. I found that this language generally cut across all divides of social strata, education, and ethnicity among the patients I treated. It was also re®ected to varying degrees in the language of physicians among themselves and with patients. In a culture where life revolves around the extended family, I was also frequently “adopted” metaphorically as an “elder” of the family and often referred to as being akin to maa (mother) or an older sister by family members much older than I was. I was always introduced respectfully to my pediatric patients by their parents as “doctor aunty.” I found that it was expected, and accepted, by many that I take a directive role as an elder in a family would, rather than merely facilitate decision making, the norm in the United States. I was drawn into physician-patient interactions that were hierarchical and relational in nature rather than those that emphasized autonomy of individuals and an egalitarian, contractual mode of conduct. The manner in which I was perceived by families was brought home to me early in my practice by the father of a critically ill neonate who required urgent surgical exploration for a perforated intestine. Once the father arrived in the Neonatal Intensive Care Unit I began to explain to him, as I would have in the United States, the nature of the problem, the necessity for surgery, risks and bene¤ts, and the need for his consent before I could operate. He interrupted me and said that I did not need his permission, that I knew best what had to be done for his child, and just as he had faith in God “up there,” he trusted me “down here” to do what was needed.7 My dawning realization of the particularity of the world in which I was now practicing was largely responsible for my increasing interest in what Kleinman and others have referred to as “local moral worlds.” My own practice in Pakistan also began to reveal some of the tensions that can result when such worlds are viewed through the prism of universal secular principles and discussed within a dis-
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course that offers a common morality as the standard for gauging ethical practice of medicine irrespective of indigenous traditions and religious values. During my last ¤ve years in the private university I was designated the founding associate dean of postgraduate medical education (PGME) to oversee and evaluate existing residency programs and to help initiate others as needed. This was the time when I began to focus methodically on bioethics and to re®ect critically on my clinical experience with patients and families in Pakistan and the ways in which this contrasted with my years as a physician in the United States. My appointment as associate dean of PGME was perhaps largely related to the success of the general surgery residency program, the ¤rst for the university and the ¤rst of its kind in the country, which I had begun soon after I joined the institution. The ¤ve years of surgical training that I initiated with graduated, increasing responsibility of the trainee was fashioned, with appropriate modi¤cations, on my own training in the United States. The surgical residency program was emulated by other departments in the university, replacing the previous (British) model of training which was closer to “apprenticeships” of trainee house of¤cers and “registrars” with speci¤c professors. (Over the last decade, surgical training in the United Kingdom has undergone many changes incorporating some of the characteristics of North American training, including an exit exam and certi¤cation at the completion of training.) During my tenure as associate dean, and at my suggestion, the university constituted a Bioethics Group (BG), the ¤rst such entity in Pakistan, and I was asked to serve as the chair. The voluntary membership of the group included sociologists, psychologists, physicians, nurses, and hospital staff. The BG began conducting regular ethics rounds and issuing an ethics newsletter (both a ¤rst for Pakistan). We expanded the earlier education in bioethics for medical students (based on the four ethical principles of Beauchamp and Childress gaining rapid recognition in Pakistan), which the university had been the ¤rst to initiate in the country, to seminars and workshops on bioethics for residents and interested faculty. These focused on “local” ethical dilemmas faced by physicians and resi-
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dents in their clinical practice. Biennial international PGME conferences were structured to include sessions devoted to bioethics with both national speakers and invited international sociologists and bioethicists.8 In 1998, I decided to spend a sabbatical year in the Department of Religious Studies at the University of Virginia in order to obtain a systematic education in bioethics. My choice of this university was largely based on my knowledge of James Childress’s seminal work in this discipline. Although my initial plans were to merely audit relevant courses, with the encouragement of Childress, who served as my advisor, I enrolled in the graduate program and obtained an MA in bioethics the following year. During my year at U.Va. I also had an opportunity to learn Arabic, enhance my knowledge of Muslim history, kalam (theology), and ¤qh (jurisprudence), and discover their relevance to an understanding of the epistemology and ontology of ethics and morality in Islam.9 During my tenure at the university in Karachi as professor and chair, and later associate dean, I had frequent opportunities to interact with healthcare professionals from other institutions both through medical and scienti¤c conferences and through my involvement in national health organizations. These included the Pakistan Medical and Dental Council, which registers medical graduates, and the College of Physicians and Surgeons of Pakistan, which certi¤es graduates completing clinical training in programs in the country. By the year 2000 I had achieved the identity of an experienced medical educator and a “senior” professor and surgeon in the eyes of the medical community. I felt that I had accomplished what I had set out to do in the university, including the sowing of seedlings which I hoped would continue to ®ourish if I left. I resigned from the university that year and returned to the United States to pursue a doctorate at U.Va. My role and reputation in the private university in Karachi served me well and provided many advantages when I decided to return to Pakistan two years later to conduct my ¤eldwork, albeit in a vastly different institution. But paradoxically, my reputation also proved to be the source of some of my profoundest personal and moral discomfort, perhaps even ambivalence, toward my research. I was re-
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turning to Pakistan in a new role, that of a participant observer rather than a clinician and surgeon. My identity as a physician (in the eyes of those with whom I interacted in the Institute, and in mine I must confess) led to con®icts in balancing my commitment not to in®uence the “natural” events I was observing as a researcher, and what I felt were my moral obligations as clinician in an understaffed institution overwhelmed with desperately ill, indigent people. In the Field: The Surgeon as Participant Observer
Field-workers studying a culture other than their own begin with signi¤cant challenges. Although “natives” may go out of their way to welcome them, even after intensive immersion over an extended period in a “foreign” culture, researchers report periods of tension and a sense of cultural isolation even as they gain insight and empathy for those they study.10 Ethnographers embarking on ¤eldwork in communities within their own culture can also face problems including dif¤culties in gaining access to the ¤eld they chose to study. Once in the ¤eld, they face an initial period of socialization, a tentative time of learning and settling into particular behavior patterns that will facilitate the study. Researchers inevitably become part of the world they study. They must develop “¤rst hand relationships” with those whose “social worlds” are to be observed, understood, and interpreted, relationships which in turn will shape and in®uence their points of view.11 I was in Pakistan to conduct ¤eld research in a medical institution in a culture in which I was born and bred. As a physician well known in the country, I had unique advantages; I was an “insider” in many ways even before I entered the ¤eld.12 During previous visits to Pakistan I had met with Dr. Ahmed, professor and director of the Institute, who knew me well from my years in the private university. When I discussed with him what I wished to do, he generously opened all doors of the Institute for me to do so. With his support I was free of any hurdles in accessing anything I required in the institution, whether this was patients and their families, the Institute’s database on transplants, or staff publications. To him I was a
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colleague who, in his words, would be doing “very important research that we need in this country and has not been done before.” Once I began my ¤eldwork he introduced me as “Professor Moazam” to all, provided me an of¤ce in the new building and a “tea boy” who was to be available at all times to see to my needs. (See “First Contact” in chapter 1.) Henceforth I was to be “Madam” to one and all and addressed with respect as aap and never the more familiar pronoun tum. Within a matter of hours of my arrival I was effortlessly ¤tted into a slot in the hierarchical system of the Institute considered the most be¤tting to my “status,” a status that rested on my recognition as a senior physician. An area unique, and important, to my ¤eldwork was my close interactions with Dr. Ahmed. The key person instrumental in my access to the Institute, he remained curious and deeply interested in the nature of my research. On the days when he managed to extricate himself from his clinical and surgical responsibilities, generally late at night, he would drop by my of¤ce where I would be working on my notes. Cups of coffee would be respectfully brought in as we talked. He would ask me whom I had interviewed that day, tell me of some of his own “interesting” cases of the past, and share his views about indigenous beliefs that in®uence family decisions on who should donate a kidney. It was clear to me that the primary reason for this “connection” with me was because Dr. Ahmed saw me as another surgeon, a professional colleague with many years of experience. This was con¤rmed to me on the afternoons when Dr. Ahmed was called to the pre-transplant clinic to make decisions on “problem” cases, be they medical or surgical in nature or related to continuing reluctance of a family to donate. On these occasions he would insist that I join him in his rounds. His cadre of physicians, residents, and staff would respectfully move aside as I would cease scribbling my notes and join the group. Although other consultant physicians and surgeons were always present, they would watch in silent respect as Dr. Ahmed would review X-rays and CT scans with me and inquire, “What do you think?” He would ask me to examine a patient to corroborate a particular ¤nding or give an opinion re-
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garding the best surgical approach to a particular tumor. This was particularly the case if the patient happened to be a child. During these rounds I would be gradually drawn into the role of one professor in discussion with another as “juniors” listened and observed in respectful silence—a common mode of traditional “professor rounds” in Pakistan. It brought back memories of my internship year in Karachi when my house staff colleagues and I listened raptly to every word of the professor. Now so many years later, I was back in another ward of the same hospital. My pleasure at being able to participate in teaching and “being a doctor” again was, in retrospect, also mixed with feelings of obligation toward an institution that had set my feet on the path I would follow, and a sense of camaraderie with a medical community to which I felt I owed a great deal. As the patients on which I was asked to consult were often those whom I had not interviewed as part of my study, the matter was not directly problematic for my research. However, these sessions led to further crystallization of how faculty, residents, and staff perceived me and certainly colored our interactions. In my meetings with the faculty and staff, and despite murmurs from some that this was really not necessary, I insisted on explaining the nature and the process of my research.13 I tried to ensure that they understood the reason behind my study and why I would be present in their clinics observing them as they went about their normal routine as they dealt with patients and their families. A few physicians expressed a curiosity, and what I felt was genuine puzzlement, that a surgeon would be merely “observing,” but all were immensely cooperative. Despite my emphasis that I was at the Institute as a participant observer, I came to realize that when the faculty, residents, and staff looked at me they saw a senior physician, a professor, and past chair of surgery. This was also the image I saw re®ected in the eyes through which patients and families gazed at me. During my interviews, and despite all earlier explanations of my research, it was not uncommon for them to relate to me their most troublesome symptoms, tell me the history of past ailments, request that I check their surgical incisions, or ask that I review a prescription written by someone perceived as a junior doctor. My guise as an ethnographer with pencil and thick
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writing pad in my hand, asking questions about how or why they had made a decision to donate, scribbling notes, was merely interpreted as a physician doing what physicians do. And almost always I was thanked for having spent so much time talking with them for they knew how busy physicians like me were. After almost two years of fulltime graduate studies in the United States—completing my course work, writing papers and meeting deadlines, and spending long hours in the libraries—I was seemingly back in familiar elements that I had swum in with ease for most of my adult life. But the ¤rst time I entered the Institute’s pretransplant clinic, it dawned on me that I was on a terrain that was very different, even “alien” in signi¤cant ways, from the private university in which I had worked. Geographically that university was situated merely a few miles away in a quiet, af®uent part of Karachi; in every other way it was located in a different universe. The Institute was not an oasis of orderly air-conditioned waiting rooms, cushioned teak benches with well-dressed patients and families waiting to be called into curtained cubicles for examination by medical students and residents who presented their ¤ndings, in English, to the consultant. Nobody here greeted me with a “good morning.” The pre-transplant clinic was located in the heart of the city in an old, British-era building many years away from a fresh coat of paint inside and out. It faced one of the busiest streets, the noises from which—rumbling buses, put-putting rickshaws, cries of hawkers, sirens of police cars and ambulances—seeped into the clinic providing a constant background to the interactions between physicians and patients. To reach the steps to the entrance door I had to walk through a dusty open space that served as an over®ow waiting area and was always full of people. Many stood in clusters, others sat listlessly on the ground. All waited to be called into the small clinic waiting room furnished with rickety benches and plastic chairs and also brimming with people. It was an ocean of human misery that I waded through every Wednesday. It was populated by indigent patients in end-stage renal failure, many on dialysis for weeks, who knew that their only chance for survival in a country with no cadaveric organ program was transplantation with a kidney from a living donor. With them stood equally distressed, anxious family mem-
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bers who had been summoned to speak with the clinic staff and be interviewed as potential donors for their ill relatives. Most of the people I saw in this clinic were extremely poor. They appeared with disheveled hair and dirty clothes, some barefooted, others with dusty feet pushed into dustier plastic ®ip-®ops. Some were also quite ill, having arrived at the Institute after weeks of inadequate or wrong treatment in smaller hospitals. I learned that many had traveled for a couple of days or more from all over the country in public buses and trains to reach the Institute. Some who had sold their belongings to obtain travel money could not afford paid accommodation and camped on the hospital grounds while their relatives underwent treatment. Occasionally I did see well-fed, immaculately dressed individuals in shalwar and qameez and designer spectacles, cell phones held in a hand or to an ear, but this was a relatively rare event. Controlling the entrance of patients into the clinic was the responsibility of a grizzled, stocky “ward boy.” Periodically, he would appear at the clinic entrance and yell out in a singsong manner a few numbers that had been allocated (in a ¤rst-come, ¤rst-seen system) to patients on arrival. A wave of people would surge toward him to hear if their number had been called, followed by a trickle entering the clinic and the rest subsiding into their waiting pose. Pakistanis are generally quick to make eye contact, even stare, but in this place I noticed that most seemed too preoccupied to do so. The tragic circumstances that had upended their lives and led them to the Institute seemed to preclude all other interests except the focus on their illness. The area of the clinic devoted to examining patients and interviewing potential family donors consisted of two long, rectangular hall-like rooms. Along the length of the longer walls of each room several cubicles had been fashioned with threadbare curtains strung on rails. Each cubicle was sparsely furnished with an examining table against the wall with a cotton sheet (changed once at the end of the clinic) thrown over it, a small table, and an X-ray viewing box. Blood pressure apparatuses mounted on wheels were rolled from one cubicle to the next as needed. The curtains separating the cubicles from the central part of the rooms were seldom drawn except in the
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case of female patients who needed to be examined. Generally I could stand in the middle of the room and see what was going on in each cubicle. The absence of privacy during physician interactions with patients and families, striking to me, did not appear to perturb anyone else in this beehive of activity. Every Wednesday from 8:00 a.m. onward to frequently as late as 3:00 p.m. (with a brief break for the staff around noon for tea), the clinic was a focus of hectic, noisy activity. Every patient who arrived had to be seen before the staff could call it a day. I would watch as a steady stream of patients with several family members in tow would ¤le into the cubicles, climb on to the table for examination, climb off after a few minutes, and another group would walk in to take their place. The clinic was staffed by half a dozen harried medical of¤cers and young men and women in various stages of nephrology and urology training who moved incessantly from one cubicle to the next taking histories, examining patients, checking laboratory results and medication doses, speaking to families, writing prescriptions, scheduling dialysis sessions, ¤lling out forms. and arranging blood tests and X-rays. Dr. Badar, chief of nephrology, and Dr. Fatima, the diminutive female nephrologist, weaved among the house staff, advising and supervising, handling problems brought to their attention—either medical (such as a rising creatinine level) or social (the reluctance of a family member to donate)—and interviewing potential donors. Urologists would walk in when summoned to review intravenous pyelograms and angiograms and decide on the medical suitability of a donor. And moving untiringly through the crowds in the two clinic rooms was always Ms. Azra, the social worker, interviewing potential family donors, coaxing, cajoling, praising, or scolding them based on their response to requests to donate a kidney. Frequently, members from several families would crowd around her simultaneously, competing with each other in telling her, voices progressively rising in volume, about personal problems, of illnesses in the family, an errant husband who drank too much, recent loss of a job, or requesting help with bus fare to come to the next clinic. The clinic seemed awash in a kind of collective experience of pain and suffering
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that I suppose made considerations of privacy and con¤dentiality a luxury. Dubbed by Ms. Azra as the Maar-Dhaar clinic (clinic of strife and noise or mayhem), the pre-transplant clinic was exactly that. It was a place teeming with terribly ill patients and their desperate families, and physicians and staff locked in negotiations and battles to locate and convince donors. Healthcare professionals were driven by the knowledge that a transplant was the only means to save the patient and return him to normal life. It also meant that a slot became available to accommodate another into the system from the hundreds of patients arriving at their doors every week. More than any other place in the Institute, it was here that I experienced the “real” Pakistan, the realities of life for a majority of its population when a family member falls desperately ill. I learned of the overwhelming task facing understaffed institutions and healthcare professionals who elect to take care of them in the public sector. I had, of course, always been aware of this aspect, interacting with it occasionally both while growing up and during my previous years in the private university. It was just that during the time I spent in the Institute this Pakistan was no longer “out there,” a presence ®ickering on the periphery of my vision; it was now all around me, and I was in its very midst.14 On re®ection, I believe that this fact together with a combination of other factors distinct to my situation led to many of my personal and ethical con®icts during ¤eldwork in the particular site I had chosen. I was beginning the study at a mature stage of life with decided views and opinions rather than as a young ¤eld-worker tentatively embarking on the ¤rst major research project in her life. Moreover, I was entering the ¤eld with education and experience as a physician and medical educator both in Pakistan and the United States, a combination that is not unique but is nevertheless not easily available in Pakistan’s health sector. I was also aware, often uncomfortably so, of having lived in plenitude all my life and now being transposed into the middle of great scarcity. In a hierarchical society I was a privileged woman with advantages and authority available to a relatively small number of people, male or female, in the country. Added to this was the fact that I was a
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cultural hybrid; not withstanding the nature of my upbringing in Pakistan, my education and indeed the independent life I had subsequently led had instilled in me beliefs and values, particularly those related to gender, that were not entirely in line with some of the norms in the country. My time in the Institute was also a time of resurfacing, after many years, of early memories of my parents, both deceased now for several years. My general practitioner father who, unlike many in contemporary specialist practice, was simultaneously involved in the lives of three generations of families returning for health care year after year, made house calls, and refused to charge poor or dying patients. And my mother who, cha¤ng at the plight and powerlessness of women she came across daily, attempted to redress injustices all her life. My mother would have perhaps scoffed at the idea of being a “feminist,” but nevertheless she was one in so many ways years before the term became complicated. In their own ways, my parents had been exemplars of the responsibilities and duties they believed the privileged owed to those less fortunate. Most importantly, perhaps, the last time I had been surrounded with this degree of poverty and destituteness, and this volume of desperately ill patients, was when I had walked the ®oors of another surgical ward as an intern in this very hospital. In the Institute, with the passing of weeks I felt myself inexorably being drawn back into a world I had left behind many years ago. I had re-entered Pakistan in the real sense. Temptations, Con®icts, and Dilemmas
My role as an observer was challenged every time my “physician’s eye” alerted me to a possible medical problem in a patient that I felt may, unknowingly or inadvertently, be overlooked in the frenetic activity around me. My own strong identity as a physician was never fully submerged during my ¤eldwork. One such instance occurred soon after I began my study. I was observing Ms. Azra remonstrating with a young woman in renal failure whose family members had once again failed to show up to be assessed as donors. I suddenly realized that the woman (whom I had interviewed in a previous
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clinic) did not look well. She seemed lethargic to me, intermittently licking her dry lips to moisten them. I interrupted Ms. Azra and asked the woman if she was not feeling well. She replied that she was running a high fever with rigors, and despite medications from a general practitioner she had not improved. I automatically reached for her pulse and noted that she had tachycardia. I knew that the patient was being dialyzed through a catheter in her neck, and automatically running through a set of differential diagnoses in my mind I became aware of the possibility of septicemia. I suggested to Azra that she discontinue her interview and called one of the residents over. I told him what I believed might be going on with the patient and suggested that he begin a sepsis workup including blood cultures. Yes Madam, he replied, and proceeded to do so. I realized later that I had re®exively slipped into my physician mode, wondering if, being as busy as they were, one of the other physicians would miss the problem if the patient had not offered the information that she was febrile. I had undoubtedly “interfered,” perhaps changing the natural course of events, but felt that I was morally obligated to do so. On another occasion, I was interviewing a man who had donated a kidney to his son and was attending the donor clinic for a routine follow-up. Toward the end of our conversation he mentioned that he had been experiencing pain in his incision and requested that I look at it. (The consultant who ran these clinics on a voluntary basis was an endocrinologist and had already asked me to “check” the incision of another patient. No surgical staff is present in the donor clinic.) After a brief moment of hesitation I did so. His incision was ¤ne but I noticed that the patient had an inguinal hernia. When asked he said that he had been aware of a soojan (swelling) in his groin but had not paid much attention to it. As a surgeon I knew the propensity for such hernias to lead to signi¤cant problems including obstruction and strangulation of the bowel. So I completed my examination, explained the problem to the patient, and then informed the internist (who had not noted the hernia) that the man needed to be referred to a surgeon. Reviewing my notes later that evening I realized that my actions in this case had almost been a Pavlovian re®ex. The nature of my research involved detailed one-to-one inter-
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views with patients and families, sometimes more than once. This meant that I had the luxury of spending far more time with them, an impossibility for the harried staff who had to ensure that everybody who came to the clinic that day was seen and dealt with. Undoubtedly this was the reason for some of the staff telling me, “Madam, you know much more about the patients than we do.” Those I interviewed provided all the information I asked for, and often much more, about events related to the family decision-making process about who should or should not, did or did not, donate a kidney. But in their eyes, despite all my explanations, I was always a physician—they would invariably relate to me, and then ask questions, about symptoms and health-related problems, many of which I found they had not had the chance or time, or inclination perhaps, to pose to the much busier physicians. After the remarkable generosity of those I interviewed I would ¤nd it exceedingly dif¤cult to end the conversation and walk away. This is, of course, by no means to deny my own dif¤culty in expunging my identity as a physician. One example of how the advantage of having suf¤cient time to spend with patients and their families led to a subsequent dilemma for me occurred when I interviewed Fehmida. She was a woman in her mid-thirties from a remote village in Sindh who had donated her kidney to her younger sister Sajeda almost nine years ago. Fehmida was married two years earlier, an arranged marriage, to the brother of her sister-in-law (the wife of Fehmida’s older brother), a not uncommon case of adal-badal (exchange) matrimony in Pakistan. Fehmida’s family of origin, including Sajeda and a younger brother, had brought her to the clinic because according to them she had not been keeping well for many months. As I interviewed Fehmida, probing her reasons for donating a kidney, I noticed that she had a mild paralysis of half of her face, noticeable only when she spoke. She said that she had developed this following an illness in childhood. Fehmida told me that she loved her sister, and although she was very frightened at ¤rst, she had been happy to give her sister a kidney, but then added that now she was not very happy. As I asked her to explain why, she and her sister began to do so together, with each speaking in turn. Shedding tears, prompting one another, one remembering what the other had for-
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gotten, they blended their narratives and wove an incredible story for me. I found out later that Ms. Azra, who generally knew intimate details of almost all the patients, had been unaware of the events which the sisters unfolded for me. When the family received the offer of marriage for Fehmida, by this time considerably older than the “acceptable” age for marriage for women in Pakistan (I felt her facial palsy may have played a role in the delay), they decided to conceal from her prospective in-laws that she had undergone a donor nephrectomy. According to Sajeda, the family was afraid that Fehmida would be considered “un¤t” for marriage and the proposal withdrawn, and it was unlikely that she would get another. The groom’s family was told instead that Fehmida’s surgical scar was related to surgery she had undergone for a renal stone. When I asked if the in-laws were unaware that her sister Sajeda had undergone a transplant, I was informed that they had known about it but were told that the Institute had “arranged” for a kidney for her. Fehmida narrated how she was abused by her mother-in-law, verbally and physically, and her fear that this was because they “knew” that she had only one kidney. She told me that someone else in the village had been transplanted in the Institute and had informed her in-laws that the physicians only took kidneys from related donors. Crying again, she went on to tell me that her husband was kamzor (weak) and a na-mard (literally, “not a man,” an Urdu term signifying impotency), that he often spent his nights in the village mosque and had no job. She then proceeded to relate her symptoms to me, which I could see dated back to two years ago and soon after she was married. Fehmida complained of insomnia (“I lie in bed thinking and worrying”), dif¤culty in getting out of bed in the mornings, lack of interest in everything, and loss of appetite. She said that she ran a fever all the time (she was afebrile on the two occasions when I interviewed her) and had headaches. Medicines from the village physician had not helped. At the end of my ¤rst interview with Fehmida, I related her symptoms to one of the residents, who said that he would run blood and urine tests and call her back the next week. I left that night profoundly troubled at many levels at what I had
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heard. I felt powerless in the face of Fehmida’s helplessness. As a woman, I knew that I was also feeling resentment and anger at cultural norms that saw marriage, any marriage, for women as better than not being married at all. Fehmida’s family had therefore opted to gamble and take the only chance they felt they had to get her married. Yet, when I had asked her directly, Fehmida had told me that she too was khush (happy) at the possibility of marriage and now blamed it on her kismet (fate) that things had not worked out. I realized that I could try to “understand” the family’s act in a society where marriage is a central part of one’s life, but I found it dif¤cult to do so. Everything went against a great many of my own convictions about gender relationships and the role of women, let alone issues of honesty and truthfulness. A part of me was incredulous and appalled at the veil of deception the family had woven to make this marriage possible and that now engulfed Fehmida in an impossible situation; another part of my brain understood that they may have been driven to this deception by the belief that this was the only chance left to her for ¤nding happiness in life as wife and mother. As a physician, what was also clear to me was that Fehmida’s symptoms were almost de¤nitely related to a distressing situation out of which she and her family of birth could see no exit. I recalled Sajeda’s stricken face and her obvious distress at her recognition of the price that Fehmida was paying for an act undertaken out of love for her sister. Fehmida was trapped in a marriage to a jobless, possibly impotent man, and escape from this did not appear possible. As this was an adal-badal marriage that interlocked two families, there could be repercussions for the marriage of her own brother if she wished, and was able, to walk out of her marriage. I was convinced that Fehmida was manifesting signs suggestive of clinical depression rather than those of a physical illness and was certain that the tests ordered by the resident would be negative. When Fehmida returned to the clinic the following week, the resident dutifully reported to me that indeed her routine tests were normal, and that he had ordered another battery of tests to check for other sources of infection. I felt myself on the horns of a dilemma. Certain that these tests were unnecessary, I felt what Fehmida
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needed instead was to be placed on anti-depressant medications. I realized that I was struggling with my sense of responsibility, as a physician, toward Fehmida together with my distress for her as a woman trapped by cultural norms, and my commitment as a researcher not to contaminate my data by in®uencing events in the ¤eld. Finally, watching Fehmida sitting listlessly with her sister hovering over her, I took the decision to speak to the consultant in the clinic. After our discussion the consultant agreed with my assessment, cancelled the tests and prescribed appropriate medications for Fehmida. In Fehmida’s case also I had clearly stepped out of my role as an objective observer. The Institute has residency training programs that include clinical and didactic teaching sessions for the trainees. But with the heavy load of patient care which the faculty and residents must perforce shoulder, it was clear that they did not have the luxury for the rigorously organized education and training together with the close supervision that was possible in the private university in which I had worked. Trainees in the Institute worked hard and long, and I found some to be very bright and knowledgeable. But there were times when I noticed lacunae in the clinical acumen of others. This recognition also provided a frequent source of con®ict for me, as was demonstrated in the case of another young woman I interviewed. Bilquis had donated a kidney to her brother and was back for a routine examination. While I was interviewing her, the medical of¤cer in the clinic came over to tell her that her urine culture revealed that she had an infection for which antibiotics would be prescribed. The physician then turned to me, undoubtedly seeing me in the persona of a consultant, and told me of the two sets of organisms that had been cultured in the patient’s urine. I knew that the presence of more than one organism in the urine indicated a contaminated specimen rather than a urinary tract infection, something that the young physician obviously did not know. Treating such a patient with antibiotics was not merely uncalled for but also ran the risk of increasing infections by antibiotic-resistant bacteria within the population at large. My interview with Bilquis had also revealed to me that she came from a large, very poor family. She would thus end up being treated for a nonexistent infection
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as well as paying the cost of medications that she could ill afford. Furthermore, I knew that there would be other patients in similar situations being handled by this young doctor in the future long after I was gone. With these factors in mind I made the decision to tell the medical of¤cer about the correct approach to diagnosing urinary tract infections, including how the urine specimen should be collected to prevent contamination. I was thanked, and a urine culture was reordered. Here too I had replaced my cap as participant observer, this time with that of a physician-teacher. Re®ecting on my actions later as I read my ¤eld notes, I was unable to convince myself that I could have done anything different ethically. I felt it would have been unconscionable on my part.15 There were other instances, however, when I judged that there was no immediate threat to the patient, and where I did draw a line against intervening directly in this fashion. After a few weeks in the Institute I had noticed that some, by no means all, of the recipients who complained to me about discomfort in their abdomen and requested I take a look had swellings in the region of the surgical incision. I could sometimes feel the transplanted kidney in the bulge, which meant that the organ was not positioned deeply enough in the pelvis. As a surgeon, I knew that at least in some cases this may have been the result of unavoidable technical reasons. However, I learned during my conversations that these swellings were present generally in cases where the transplant had involved less experienced surgeons. After some re®ection I decided against raising this issue with the senior transplant surgeons. Early in my research I had consciously decided against using the operating room as part of my ¤eld, believing that this would place me uncomfortably close to my “home ground.” I was a surgeon who had inhabited operating rooms for many years in the position of chief of surgery. I had also been involved in scrubbing and helping residents and younger, less experienced colleagues long enough to believe in the absolute moral imperative for senior surgeons to intervene if their experience and judgment could make a signi¤cant difference in the outcome of a procedure. I therefore felt that it would be impossible for me to merely “observe” surgical procedures. In ad-
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dition, I suspected that my presence in the OR could be a source of discomfort for younger surgeons. In retrospect, I believe that my decision was correct. Underlying my dif¤culties in maintaining a distance, I felt, was my identifying with physicians of the Institute and also my admiration for their idealism that seemed unshaken despite the limited resources and incredible pressures and stresses under which they worked. The last was brought home to me during one of the busiest Maar-Dhaar clinics I happened to attend halfway through my research. During the previous week there had been fatal shootings of two physicians in Karachi while they were driving to their clinics. Another had been shot dead in his clinic by a man posing as a patient. None of the assailants had been captured. This was not the ¤rst time that physicians had been the victims of such violence in Pakistan; there had been similar spates of random shootings targeting physicians in the past. Despite multiple theories about the reason for these seemingly senseless murders, most centering around “terrorists” and “sectarianism” and “miscreants” who wished to destabilize the government and terrorize the public, the police had been largely ineffective in arresting anybody. The clinics of the Institute together with outpatient services of all other government hospitals in Karachi had been cancelled for a day at the request of the Pakistan Medical Association as a form of protest. In this particular clinic, therefore, the staff was handling an extra load of patients who had not been seen in the previous week. Late in the afternoon as I was making entries in my notebook, I heard shouting from the center of the room. I looked up to see a gray-haired man with a Sindhi cap perched on his head throw himself on the ground and begin to wail loudly. Suddenly all other noise and activity in the crowded clinic came to a standstill as though switched off with the ®ick of a button. Everybody turned to see what was going on. I watched as two young men (the older man’s sons) and the residents tried to hoist him back onto a wheel chair, requesting that he get off the ®oor. The man struggled against them and threw himself back on the ®oor, all the while wailing something in Sindhi which I could not understand. I saw him look around, perhaps to judge the reaction of the observers, and he met my eyes brie®y.
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Dr. Fatima approached the man, and I heard her say to one of his sons in a voice with controlled anger, “Look, this tamasha [dramatics, acting out] will not bene¤t anyone. He will not gain any hamdardee [sympathy] by it.” As the struggle to get the wailing man back into the wheelchair continued, Dr. Badar walked over and took the clinic card (carried by all patients) from the son’s hand and shoved it into the pocket of his white coat. One of the most gentle, sanguine men in the institution, I had never seen him so angry before. In a soft, steely voice he said, “This is enough. Take him away. Leave right now. We will have nothing more to do with him.” The man’s shouting ceased abruptly, and he allowed himself to be settled into the chair and was wheeled out of the clinic. The normal din in the clinic gradually resumed as people went back to what they were doing. Within a couple of minutes one of the sons re-entered the clinic, and I saw Dr. Badar approach him and return the patient’s card to him. His calm demeanor back in place, he told the man to bring his father back to the clinic the following week for peritoneal dialysis. He explained how a tube would be inserted in the abdomen to “wash” out his blood and that this would take care of the symptoms he was experiencing. As the son thanked Dr. Badar and left, I walked over to ¤nd out what had gone on. He told me that the elderly man had been on hemodialysis for many months, and unfortunately investigations had revealed severe coronary disease that made him un¤t for a transplant. That day in the clinic the patient and his family had been informed of the decision that because the patient was no longer a candidate for transplantation, he would be switched from hemodialysis to peritoneal dialysis. However, the patient remained adamant that hemodialysis continue, and when he was told that this was not possible, the scene I had witnessed had ensued.16 I asked if perhaps the man could have been referred to another institution for hemodialysis. Dr. Badar, with his brow furrowed and face devoid of its usual smile, explained in a frustrated voice why this was not an option. There is no place in the city where he can have hemodialysis done free now that the government-sponsored scheme has been discontinued.
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They can’t afford to pay. And our dialysis program is “choked.” Last week alone we had ¤fty-¤ve new patients admitted to our hemodialysis program. We have to begin to say no. I have stopped going to the dialysis unit. I am becoming known as the man who says no. Today these patients make a scene, kal hamein garaiban say pakrein gay [tomorrow they will grab us by our necks, collars].
The scene I had witnessed demonstrated the true meaning of limited resources and global inequities between the “¤rst” and the “third” worlds. I thought how it was one thing to sit in conferences and debate the ¤ner points of social justice and look at numbers and ¤gures related to disease and disability, and quite another when there were ®esh and bones attached to these numbers and despairing eyes that looked directly into yours. Dr. Badar’s frustration was clear at the numbers of renal failure patients that streamed in endlessly into the Institute for hemodialysis, and his realization that they would never have suf¤cient resources to help all of them. It was clearly dif¤cult for him as a physician, as he had told me in so many of our conversations, to have to refuse to provide something as simple as hemodialysis, commonplace and accessible to all in so many countries. But I now realized that there were other factors responsible for the stress and anger I had witnessed among the staff in the clinic that day. They practiced in a city where physicians had been targets of violence, the last episode merely a week previously, that included fatal shootings inside clinics. What Dr. Badar had said to me clearly re®ected his anxiety about these events, yet I did not know of any evidence that the random shootings in town had occurred at the hand of angry patients. I asked Dr. Badar if he knew of any instances of violence toward physicians within the wards and clinics of his hospital. He said yes and related a couple of incidences in the “casualty” department (the emergency room of the same hospital but not the Institute itself ) in which angry family members had physically assaulted physicians whom they blamed for the death of a family member. He said that he was afraid that a time might come when someone among the hundreds of families they handled in the Institute would take it upon himself to attack the staff due to his anger over his kin
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being denied hemodialysis. He added, “It may not be so bad for me because I am a man. But I don’t want anything like that to happen to Azra or Fatima.” Time to Depart from the Field
Over time, an especially close rapport developed between the two long-term female members on the staff, the nephrologist Dr. Fatima and the social worker Ms. Azra, and me. Both were younger than I, and as I was the only “senior” female in the Institute. I suspect that in some ways I may have come to be seen by them in the role of a mentor. Dr. Fatima would sometimes stop by my of¤ce, and we would chat about her desire to pursue a doctorate in immunology and the logistics for her to do so. Meanwhile, Ms. Azra would sit with me at the end of the clinics to compare her impressions with mine about patients we had interviewed. In our many conversations, it was not dif¤cult for both women to realize that I shared many of their perceptions, and resentment, at the powerlessness of some women in Pakistan at the hands of their families. Undoubtedly, this too served to forge an additional bond between us. Both would relate stories to me about the ways in which they assessed the willingness of a woman to donate (which I found helpful), and triumphantly tell me of steps they had taken to protect someone who they felt had been reluctant to donate. Ms. Azra, who over time had come to serve in the capacity of my primary informant, often provided detailed and useful background information about patients and families. In her eyes, although I was a physician, like her I was interested in “non-medical” aspects of the patient’s life. Watching me writing my notes she said wistfully once, “When I ¤rst came here I used to write long notes like you, but I am too busy to do that now.” Her memory for family dynamics around transplants done years ago, including names of donors and recipients, was truly astounding. In the clinics she began to make a point of telling me about “interesting cases,” especially women who she felt had been pressured by the family and brought in as willing donors. She would request that I interview them, saying, “Dr. Moazam, tell me what you think.” I often felt that it was as though both women sensed that now
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there were three women instead of two who were available to watch out for and “protect” oppressed women. At times they would complain to me about a particular male physician who had decided to take a kidney from a woman even when there were potential male donors in the family. I had come to be seen as a comrade in arms. With my own biases and convictions about gender relationships, I found that it was frequently situations concerning women that troubled me the most; invariably these cases led to some of my most profound dif¤culties in trying to maintain the necessary distance and objectivity expected of a participant observer. Toward the end of my three months in the Institute I felt that I had suf¤cient data to sort my results into themes and begin to analyze my ¤ndings. It was also beginning to dawn on me that I was being progressively drawn into the world of the Institute. I had been programmed for so many years of my life, and it was becoming increasingly dif¤cult for me to control my instincts as a physician and to continue to “take notes” when I felt that I had an obligation, and the capacity, to roll up my sleeves and help. But it was my personal distress and emotional involvement with two patients, a thirteenyear-old girl, Ayesha, and a young married woman, Salma, both awaiting family donors for transplant, that ¤nally convinced me that it was time for me to leave the ¤eld. By now Ms. Azra was frequently turning to me at the end of clinics to discuss not only ¤nancial and social problems of patients she had seen but also the number of family members she had interviewed that day who had been reluctant to donate a kidney. Such a pre-transplant clinic she dubbed as the Ghamon kaa clinic (clinic of sorrows). She and I would discuss patients, frequently women, who had been waiting unsuccessfully for several months for a donor to materialize, and at times she would look at me and remark astutely, “You too are depressed today, I can see.” It was during one such clinic that she came over and requested, “Dr. Moazam, please see that bicharee bachee [poor child] Ayesha. She has been on dialysis for so long. That is her khala [maternal aunt] with her. Ayesha’s brother has ¤nally come today [as a potential donor], but only after bohat ghussa kar kay, phitkar day kay bulaya hey [I was very angry with them and made them feel ashamed of
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themselves]. Please talk with them.” She said that Ayesha had been on dialysis for many months, and the staff had been unsuccessful in locating a donor for her. When I walked over to the cubicle I saw a sallow-skinned, puffyfaced little girl who looked much younger than her thirteen years. Ayesha was shy, spoke little, but smiled at me whenever I met her eye, and I noticed her closely following my conversation with her family. The khala, a thin unmarried woman around thirty years old, did most of the talking until ¤nally Ayesha’s brother Anwar, a twenty-two-year-old young man, relaxed enough for me to engage him directly. The khala told me that Anwar and Ayesha were orphans, both their parents having died unexpectedly many years ago. Although the aunt lived in Karachi, Anwar, who was the oldest child, Ayesha, and their siblings, which included two younger brothers and another sister, lived together in Hyderabad. When Ayesha fell ill, the khala had brought the girl to live with her and her elderly mother in Karachi so that Ayesha could be dialyzed at the Institute. Anwar was the sole breadwinner for the family, and although there were several paternal uncles living in Hyderabad, I was told that they provided ¤nancial help only once in a while. According to the khala, and con¤rmed by Ms. Azra, all the paternal uncles had refused to donate a kidney and even come to the clinic to speak with the staff. The khala said that she had tried to convince Ayesha’s eighteen-year-old brother to donate a kidney to Ayesha, “But he was very afraid and did not want to come to the clinic.” Apparently he had sustained a major injury in one eye as a child and had lost the vision in it. I asked Anwar what kind of work he did. Eyes downcast, he told me that he had studied until “Inter” (class 12) and added, “I work in a factory now. They manufacture dhaga [thread, yarn] there and I help the workers.” The khala interjected that Anwar was afraid that if he had to come to Karachi frequently (for donor tests), he would lose his job. I asked Anwar if he had not told his employers the reason for his visits to Karachi, and that surely they would understand. He replied, “I told the supervisor, but he said that if you have to go to Karachi so often, why don’t you just go and ¤nd work there instead of here.” How about the owner of the factory, I asked.
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Anwar said that owner was never in the of¤ce, and that he did not even know the man’s name. I informed Anwar that I had been told that he too had been reluctant to be tested as a donor, and I asked if that was because he was afraid. He smiled and said no. I remarked that it was normal to fear having an operation, and for the ¤rst time in our conversation Anwar made eye contact with me and said, “Everybody tells me that if I give a kidney I will become sick also. I won’t be able to work. They say that then there will be two people who are sick in the family instead of one.” For me, this was a tragic case in more ways than the suffering of a child. At an intellectual level I could see that it was simplistic to paint a shining picture of Pakistani culture as one of close-knit, sel®ess families and juxtapose it against an equally reductive image of all Western values as individualistic and non-caring. “Modern” ways of life have their pockmarks, but “traditional” systems are not pristine either. But at an emotional level I was angry at what I saw as a ®outing of values of a culture and religion of which I considered myself a member. Five orphans had been left by their extended family to fend for themselves, with the oldest brother who had just crossed the threshold into adulthood having to shoulder an incredible responsibility for someone his age.17 I could see that Anwar was terribly afraid, despite his denials; he was concerned not only for himself and for Ayesha but also anxious about repercussions for his family if he too became incapacitated or lost his job. Next to him stood the worried khala and a silent Ayesha, who was the age of so many children I had taken care of in the past. The female nephrologist who had walked in brie®y to check some of Anwar’s test results was now busy with a patient and his family in another cubicle. I thought of what Ms. Azra had told me not too long ago, “We like how you talk to patients and how you can explain things to them.” I felt that her own concern about Ayesha’s fate, combined with her fear that Anwar may still withdraw from donating a kidney, had led her to request that I talk with the family. This time it was not because it was an “interesting” case that Ms. Azra was sending my way as she so often did; unconsciously or perhaps
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consciously she had asked me to help. This had been yet another Ghamon kaa clinic. Donning my physician’s persona I praised Anwar for coming to the help of his sister, who had no other chance for survival. I explained to him the routineness and safety of a donor nephrectomy (even as another chamber of my mind acknowledged recent concerns rising about the possibility of late morbidity among donors), mentioned the Institute’s record of no mortality among donors, reassured him that he could go back to work within six weeks and that he would be able to lead a normal life, get married, and have children (this last an often unvoiced worry of many patients and families). I then spoke with Dr. Fatima regarding Anwar’s fear about losing his job and suggested steps she could take that might help, including a letter for his employer written on the Institute’s letterhead emphasizing the family’s predicament and the willingness of Anwar to make a sacri¤ce for his sister. A little moral pressure on the man would help to ensure that Anwar does not lose his job, I suggested to her. Dr. Fatima said that she would do so and that she would also minimize Anwar’s visits to Karachi for his tests, get the employer’s name and phone number, and speak to him directly. I was aware that in Ayesha’s case I had taken the decision to cease being a ¤eld-worker conducting research; I had consciously assumed the role of a Pakistani consultant surgeon taking steps to help achieve what I believed was in the best interest of a patient and her family facing a terrible situation. I was aware as I did so that this re®ected my over immersion in the Institute and in the lives of patients and families I was interviewing and my own biases coming to the fore. It was a re®ection also of my increasing ambivalence toward the research I was conducting. I felt that not taking the steps I did would have left me troubled. Later, when I told Ms. Azra about what had transpired with Ayesha and that Dr. Fatima and I had discussed what needed to be done, she said, “But Dr. Moazam, you will be here for another month.” When I replied that, in fact, I would be heading back to the United States soon, she exclaimed, “Ya Allah [Oh, God]. Then I will have to keep bothering you with e-mails and letters.” The second case that was a harbinger that it was time for me to
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leave the Institute revolved around a young woman and her family. I had ¤rst interviewed them soon after I arrived at the Institute. Salma, a twenty-two-year-old woman from a small village in rural Sindh, married for six months, had suffered a miscarriage at two months of gestation. Her care in a local hospital for massive hemorrhage had been deplorable, leading to chronic renal failure. Following initial dialysis in the village she had been brought to the Institute. In her ¤rst clinic visit Salma was accompanied by several female members from her families of birth and marriage and an older, married brother, Riasat. Salma was a beautiful, vivacious young woman, talkative and all smiles. At the time I had felt that she did not yet fully comprehend the severity of her problem. When I had interviewed the family, Riasat had told me that he had come speci¤cally to be tested as a donor for his sister. With a high school education, he spoke in Urdu but sprinkled his conversation with English terms. He said that he was eager to donate as Salma was hamara khoon (our ®esh and blood), that he was not afraid, and that it was “no problem.” I asked if his wife, a ¤rst cousin, would have any objections to his donating. He smiled and said that she was shareek hay (shares his decision, agrees), and repeated that it would be “no problem.” I was told that a younger, unmarried brother was also willing to donate. Riasat was sent off for initial tests, and Salma was provided a date to have an AVF (arterio-venous ¤stula) constructed for dialysis. My notes of the day entitled “The No Problem Brother” recorded that “the staff was all smiles” expressing a sense of satisfaction and relief, which I shared. In the subsequent weeks Ms. Azra informed me that Riasat’s tests including an IVP were normal, and matters were progressing well. Only an angiogram and tissue typing now remained to be done, the last steps before his donor nephrectomy. Approximately two months following my ¤rst interview I was working on my notes in the pretransplant clinic when an obviously angry Ms. Azra stalked by me with a young woman following closely behind her. I heard Ms. Azra say irately, “That’s enough. It is now two months, and he has not shown up. I won’t sign, no dialysis.” The young woman saw me sitting at the table, and her smile widened as she walked over to greet me. She said, “I am Salma. You saw
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me when I ¤rst came here.” I asked how she was doing, and she told me that “Madam” was refusing to give her a dialysis date. “She is very angry because my brother has not come for his angiogram. What can I do? He told me that he is sick, he has fever.” In that case, I suggested, it is important that he come to the clinic so he can be checked. Salma said that this was not possible as the village he lived in was very far from Karachi. I explained to Salma that Madam was angry only because she was concerned for her, that dialysis was a temporary measure and that her transplant was essential if she was to get well. With her face now serious, Salma repeated again, “Mein kiya karoon [What can I do]?” I suggested that she should call her mother, emphasizing the necessity of a transplant for her survival, and that perhaps the mother could also speak to her son Riasat. Salma said that she would do so. Ms. Azra, who had been watching this exchange out of the corner of her eye, now walked over and signed Salma’s form for a dialysis date, admonishing her again that she had better get Riasat to come for the angiogram. After Salma left, she looked at me grimly and said, “I know that her brother will not come. It has been more than two months now. He will say that his wife is not letting him give a kidney.” Later, reviewing my earlier notes on Salma’s family, I was mysti¤ed. Riasat had told me with con¤dence that his wife agreed with his decision to donate. What had transpired in the last two months for this reluctance now on the part of the “No Problem Brother”? Two weeks later I saw Salma in one of the cubicles accompanied by an older woman (her mother-in-law) in conversation with Ms. Azra and a resident. I was struck by the marked change in Salma. She sat quietly, body hunched forward, her face wan and with no trace of her familiar radiant smile; her posture conveyed a sense of dejection and hopelessness. As I walked up I heard her motherin-law say in an irritated tone, “Riasat ub baat hee nahin kaar raha hay [Riasat is now not even willing to talk about it]. Salma called her mother, who said that he is not willing to give a kidney.” The mother-in-law then went on to complain how dif¤cult the last two months had been for her due to Salma’s illness. She said that the two of them had been staying at the house of her nanand (hus-
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band’s sister) in Karachi, rather than returning to their village, so that Salma could have her dialysis in the Institute. It was awkward; how long could they possibly continue to do this? She said that Salma now needed a special diet, and this was getting to be very expensive for them. Throughout this conversation Salma sat silently with downcast eyes. The resident turned to me and said with anger, “Madam, do you know what Salma has just told me? She says that she too would not let her husband give a kidney to anyone.” I asked Salma why she had said so. I had to repeat my question twice before she responded in a barely audible voice, “I would also be afraid that my husband will die.” I realized that the savvy Ms. Azra had been correct in her suspicion that Riasat’s wife was behind the reason for his backing away from donating. I asked Salma if she could make another attempt to contact her brother, perhaps she could get their mother to use moral pressure on him to come to the Institute. I said that this would be merely to speak with the physicians again about what a donor nephrectomy entails, and then he could make his own decision. Salma said that she would prefer to talk to him in person rather than on the phone. The mother-in-law interjected that it took six hours by bus to travel from their village to Karachi. I asked if there was a clinic where she could be dialyzed while she was in the village. Dr. Fatima, who had joined us in the cubicle, said she knew of a hospital in their village and now took over providing them with relevant information and the name of a doctor they should contact for dialysis. I watched as Salma became more animated, even smiled a little, as it was decided that she could leave for her village for a few days to meet her family. Later that afternoon, with Salma’s face still in my mind, I spoke with Dr. Badar about the case. I mentioned my own reactions, my anger and also my lingering con®ict at having intervened. He looked thoughtful for a moment; then he smiled and said quietly, “As a doctor, you could not have stayed out of it.” I asked him what he thought would happen with Salma based on his previous experience with such cases. He said that the brother would most likely not be persuaded to donate a kidney. Then doing some quick calculations about the expense if Salma did not get a transplant, he said, “If her
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in-laws have to continue to bring Salma to Karachi for dialysis twice a week, it will end up costing them around Rs. 8,000 to Rs. 10,000 per month [for transportation and other expenses]. This is too expensive for any family. They will sell her jewelry to pay for it.” I inquired as to what he thought would happen after the money ran out. Dr. Badar replied quietly that she would most likely die, adding, “Her husband will get another wife.” As never before, I understood what made the staff use every weapon they had to get a kidney for their patients. I was suddenly “in” the Institute in the true sense of the word. I realized that I too wanted to be able to ¤nd a kidney for Salma somehow, to see this young woman transplanted so she could live her life. At a personal level I was angry at the brother who had reneged on his promise to donate to “his blood,” knowing that his sister’s life depended on this. How could any other consideration supersede this fact? My interviews had indicated the preference given in many families to male members, and I wondered whether the mother would have been more forthcoming in using her in®uence if it had been her son who needed a kidney rather than her daughter. Intellectually, I was aware that, perhaps unfairly, I was using a yardstick of values instilled in me by my mother about responsibilities toward a sibling, somebody who shared your khoon; at an emotional level I was thinking of my own response if my sister was to ever face a life-threatening situation like Salma. A few days later, Ms. Azra informed me that Salma had arrived in the clinic with her mother, who had offered to donate a kidney but was judged to be too old. The mother had con¤rmed that it was Riasat’s wife who was not allowing him to donate a kidney. Knowing that Salma had another brother, who was unmarried, Ms. Azra had told the mother that he must report on the following day to be checked as a donor. She said that she had “threatened” that they would stop dialyzing Salma if the brother did not show up, adding, “Bicharee Salma looked very depressed today. There was no smile on the poor girl’s face.” The next day she approached me, obviously delighted, and told me that Salma was in the clinic with her other brother, Aijaz. She then implored, “You must speak to him, Dr. Moazam. Salma looks really terrible.”
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I spoke with Salma and Aijaz in a small room adjacent to the clinic after requesting that her mother-in-law, hovering in the background, wait outside. With her mother-in-law out of the room, Salma spoke freely for the ¤rst time, and I realized that matters were not quite as simple as I had thought. I began to understand the tangled weave of the lives of two families that lay behind Riasat’s change of mind in donating his kidney and his family of birth’s reluctance to pressure him to do so. Salma told me that Riasat and their oldest sister, Maryam, were married into the same family under the adal-badal (exchange) system common in Pakistan. In other words, Maryam was married to the brother of Riasat’s wife. I gathered from what was said that that family was more powerful and better connected than Salma and Riasat’s family of origin. Salma explained, When Maryam’s husband heard that Riasat was going to give me his kidney, he told his wife [Riasat’s sister] that jis din wo apna gurda dey ga, us say pehlay tum is ghar say bahir jao gee [the day he wants to give his kidney, before that day ever arrives, you will leave this house, I will leave/divorce you]. We all know that Riasat’s wife does not want him to give me a kidney.
I had been told that the basis for adal-badal marriages was to forge stronger bonds between two families while also enhancing matrimonial security for two seemingly equally invested couples. But what I heard from Salma demonstrated how such an arrangement can also work to the detriment of one of the two women involved in the “exchange.” In this case it was Maryam and her family of origin. The threat of a divorce by her husband and what this entailed for women in Pakistan were suf¤cient to halt Riasat in his tracks, however much he may have loved Salma. By donating his kidney he would be jeopardizing the future of another sister, one with three young children. I was encountering the Janus face of extended families. What Salma’s narrative demonstrated to me, yet again, was how intricately enmeshed and interdependent lives can be in Pakistan, making the concept of an autonomous agent irrelevant in the ground
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realities of the ways lives are lived. Salma’s renal failure and the staff ’s quest for a family donor for her had entangled in the net many lives bound together. And for Salma herself, I could see how her own suffering was being compounded by her concerns regarding the strains her illness had caused in the married lives of an older brother and sister. What I heard also con¤rmed the paradox of the ways in which women negotiate their lives and effectively wield power within androcentric societies. Mohanty criticizes a Western feminist discourse that tends to project composite images of a passive and generic “third world woman” and a “cross-culturally singular, monolithic notion of patriarchy or male dominance” within traditional cultures, ignoring the in®uence of class, ethnicity, and nature of social relationships.18 That such reductive images clearly disregard the heterogeneities of the lives of women in non-Western societies such as Pakistan was illustrated in the helplessness of Salma and the control of Riasat’s wife. Salma’s narrative revealed how Riasat’s wife, unhappy at the prospect of his undergoing a nephrectomy, had taken matters into her own hands. In a male-dominated society she had used her brother as an instrument to checkmate her husband, shrewdly harnessing and utilizing the dominance of one male over another female to her own advantage. She was undoubtedly aware that Salma’s life was at stake, but her practical concerns were not with theoretical considerations of a “universal sisterhood” uniting women against male dominance that features in the discourse of some feminists. Her actions were dictated by her anxieties (irrational as they might seem to me) for the safety and survival of the breadwinner of her family and the future of her three children. It would not be far-fetched, in fact, to state that it was really Riasat’s wife who was the most powerful agent here, the primary force manipulating events through two males in her life, her husband and her brother. In this background I felt that unmarried Aijaz, with a compatible blood group, provided the only means for Salma’s survival, a goal in which I had now fully invested myself. An educated man, a teacher in a private school in a small town, he listened carefully as I went
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over what a donor nephrectomy entailed and explained the many misconceptions people had about the deleterious effects of donor nephrectomy on work, marriage, and fertility. I emphasized that dialysis was a temporary measure and that renal transplantation was the only cure for renal failure. Aijaz interrupted me at this point and said, “You can take my kidney for Salma,” requesting with a smile that we not take a long time in doing the tests. He said that when people ¤nd out that someone wishes to donate a kidney, they approach him and “warghalatay hein [try to lead astray, frighten, dissuade],” suggesting, I felt, that this had been the case with Riasat. At this point I contacted Ms. Azra and a senior nephrologist present in the clinic, related the gist of what I had learned, and asked them to expedite whatever needed to be done next to assess Aijaz as a donor. Before I left the room I commented to Aijaz with a smile that I hoped he was not going to run away after the tests were done. He laughed and said, “No, Madam, I won’t.” Later I saw Salma laughing and chatting with her brother as she waited to get a date for her next dialysis session. I completed my study a few days later and returned to the United States, knowing that in the cases of Ayesha and Salma I had clearly overstepped the boundaries within which a participant observer must function. I had intervened actively and knowingly, identifying fully with the staff in their efforts to ¤nd donors. I was aware that I had reached a stage in my research where as a physician I was becoming increasingly ambivalent and morally troubled in the role of an observer. I also felt that my personal Pakistani values about the obligations of a family, both religious and cultural, and particularly toward siblings, were beginning to profoundly in®uence my interactions, as were perhaps my non-Pakistani views about gender relationships. It was time I left. Postscript
A year later I returned to Pakistan for a visit that was to combine presentations at medical conferences with the pleasure of meeting family and friends. Ms. Azra and some of the physicians had kept in
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touch with me after my return to the United States, and while in Karachi I went over to visit them in the Institute. It was the familiar chaotic scene; nothing had changed. Crowds of patients and families streamed into the clinic, and harried physicians and staff moved rapidly from one cubicle to the next. I ¤nally managed to corner Ms. Azra and asked her about the young girl Ayesha. By my account she should have been several months post-transplant now with her brother’s kidney. Ms. Azra’s brow furrowed with displeasure as she said, “Dr. Moazam, can you believe that her brother ran away even after you took so much time to convince him to give his kidney? After you went back he never came back to the clinic. That bicharee bachee [poor child] is still on dialysis.” Taken aback at what I had heard, I asked Ms. Azra what had happened. She said the khala suspected that one of the paternal uncles had frightened the brother away from donating a kidney to Ayesha. They had been unable to convince him to return for further tests. She added, “We are now trying to convince the khala to give a kidney, but she works and takes care of her old mother.” I then asked her about Salma. To my surprise, at ¤rst Ms. Azra could not recall who I was talking about. I reminded her of the “No Problem Brother” Riasat, who had backed out of donating to Salma due to his wife’s pressure, and how we had managed to convince her unmarried brother Aijaz to be tested as a donor in the last few days of my study. Remember the talk I had with him, I asked. “Oh yes, I remember now,” she replied. “Aijaz came for the ¤rst few tests and then never returned for the others. He ran away like his brother Riasat.” But then what happened to Salma, I asked. She said that Salma had stopped coming to the Institute for dialysis a couple of months after I left, and she did not know what had happened to the young woman. Ironically, despite misgivings that I was overstepping my role as a participant observer, I had been unsuccessful after all in changing the course of events in the two cases in which I had interfered. I wondered what had happened to Salma, and whether she was still alive. In her case, I had left con¤dent that a clear picture of the
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dynamics of her family had emerged during my interviews, and certain that her brother Aijaz would donate his kidney. It seemed that I had obtained no more than a super¤cial glimpse into the complexity of their collective lives and had touched only the surface of darker, deeper currents.
5 Conclusion: Ethics and Pakistan Having the idea is not living the reality, of anything Jelaluddin Rumi, The Essential Rumi
Science perceives factual knowledge of the human body and its pathophysiology as being universal in nature; after all, the ways in which human cells and organs respond to disease processes are, except for minor variations, not very different whether an individual is a resident of Asia or North America. But in the practice of medicine, physicians must reach beyond the textual realm of the disease of organs and systems to the contextual complexity of illness as it is experienced by patients and those who are part of their lives. Life-threatening diseases such as kidney failure are experienced not merely physically but also within their emotional, psychological, sociological, and ethical dimensions. The ways in which patients and families comprehend and deal with serious ailments is inevitably in®uenced by local cultural norms, which include religious beliefs and values as well as the socioeconomic realities of their lives. In the same way, healthcare professionals internalize indigenous values of the society in which they work, re®ect these in their interactions with people who turn to them for care, and function within healthcare systems of which they are components. This book is the story of a unique healthcare institution in Pakistan, its staff, and the patients and families who approach them for care; it illustrates the in®uence of culture and socioeconomic realties on how medical care is given and how it is received. In this Institute, described as “a Pakistani institution” by many I met, healthcare professionals share, re®ect, and utilize local value systems to achieve success against extraordinary odds and within severe limita-
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tions of national healthcare systems. In a country with 140 million people, many living below the poverty line, the Institute provides dialysis and kidney transplantation free of cost irrespective of the socioeconomic status of those who knock on its doors. Deluged by a seemingly endless stream of patients, the Institute bears the brunt of a health system with no national health insurance schemes, insuf¤cient dialysis and transplantation services, and only a handful of institutions that provide adequate care that is accessible and affordable to the vast majority. The staff in the Institute deals daily with overwhelming numbers of patients (as many as ¤fty-¤ve new ones every week), the vast majority of them terribly ill, desperately poor, illiterate, and lacking awareness of the consequences of renal failure left untreated. Compounding the problems for the staff is the absence in Pakistan of a cadaveric organ procurement and transplantation program due to a combination of reasons that include complex cultural and religious beliefs. An equally important factor is the lack of will on the part of the Pakistani legislature to discuss and approve an organ transplantation bill that has been lying dormant in the Senate since 1992.1 Therefore, in light of a dearth of good facilities for affordable long-term dialysis facilities, the only option left for patients in renal failure to return to a functional life is to be transplanted with a kidney from a living donor. Aware of hospitals that use unrelated, paid donors and convinced that this practice is unethical, staff in the Institute accepts only blood-related donors chosen from within the extended family.2 They approach family members directly, remind them of their cultural and religious obligations to save the life of kin, reason with them, coax them, shame them, and occasionally threaten them with discontinuing dialysis. Utilizing an approach that rests on norms of obligations to kin and culturally sanctioned authority of healthcare professionals, the staff manages every year to save lives and return more patients to normal existence than any other similar institution in the country. The ethos in the Institute, for professionals and patients alike, mirrors the values and characteristics of the khandan (the extended family), a microcosm of the social moral order in the country. In this
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de¤nition the family, incorporating intricate kinship, extends beyond the nuclear family characteristic of many modern societies and envelops many others related by khoon (blood) or through marriage. Muslim values and Pakistani kinship systems are important elements that cut across gender, ethnicity, education, and social strata of those I interviewed. “Joint” families, often with three or more generations living under one roof, maintain vertical and horizontal intergenerational bonds even when adult children move to other towns for jobs or move out following marriage. These ties are even tighter when human resources have to be pooled for the survival of the extended family. To the staff, returning one member of such a family to a functioning life means saving several profoundly interdependent lives. For better or worse, the family is perceived as the center of existence, the irreducible unit of society. The Pakistani family is hierarchical with well-de¤ned roles and responsibilities related to gender and age. It is the responsibility of male members to serve as the breadwinners for the family unit; women, even if holding a job “outside,” are considered the primary caretakers of the home and children. In a patriarchal, patrilineal society, the male is perceived as the head of the family although the older woman’s position, and her religiously legitimized authority as a mother, can be striking.3 Family obligations and loyalties are considered moral imperatives with an emphasis on harmony and relationships rather than entitlements of individual members. 4 Such a construal of the “self,” one inextricably enmeshed emotionally, psychically, and often economically with others in the family, is inherently different from a social matrix woven around the concept of autonomy and self-reliance. In the Institute, these indigenous value systems and the centrality of the family pervade the consciousness of professionals and laypeople alike and de¤ne the moral horizon. They in®uence contestations, negotiations, and compromises that take place among members of a family, color patient-family-physician relationships, and inform decision-making processes as well as decisions about who should donate a kidney. These social and moral processes differ both in essence and expression from those more characteristic of nuclear families in modern societies. The web of family obligations de¤nes
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the metaphors and language used by Pakistani physicians, donors, and families. The term altruism and the metaphor gift of life, ubiquitous in many Western societies, are never used. The motives given for donating a kidney include mohabbat (love) for the recipient but are more likely to be expressed as farz (duty, obligation), mera khoon (my ®esh and blood), or pragmatically as a majboori (a necessity) to ensure the survival of the family. The reward for donors is framed in religious terms such as sawab (a deed rewarded by God in this world or the next) rather than expressed as an increase in personal selfesteem. The belief that carrying out obligations toward kin, particularly those in mortal danger, is morally prescribed underlies the satisfaction and pride of those who donate and is equally responsible for the guilt and shame, and the “excuses,” of those who are reluctant to do so. Donating a kidney to a family member is seen by many as a qurbani (sacri¤ce) but is still considered an obligatory rather than a supererogatory act. Among those reluctant to donate, no one offers the argument that it is their body, that they are free to choose whether to donate or not, or that it is their right to refuse to do so. In the face of moral pressure on the part of healthcare professionals, and within the norms of a society that disapproves of open confrontation with those in authority, many reluctant to donate just disappear. In Pakistan, the metaphor of family and kinship is extended to public interactions in other domains of life.5 In a culture in which people con¤de in and trust family members rather than strangers, trusted healthcare professionals are metaphorically adopted into the family as authority ¤gures, the “elders.”6 Augmenting the cultural esteem for physicians is the historical authority and privilege that they have been provided in Islam. Historical texts refer to them as Hakeems (the wise ones), as instruments of God’s mercy on earth, and de¤ne their care of patients as a form of worship.7 All these factors are at play in the Institute. Healthcare staff are frequently referred to as being akin to maa-baap (mother or father) or an older sibling. In a society in which hierarchy and authority are accepted as central elements of social order, staff as ¤ctive older members of the patient’s family is expected to assume a directive rather than a facilitative stance in their interactions with patients and
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families. In the Institute the notion of the “sacred” nature of physicians and their work is evident when patients describe them as angels or state reverently that just as “up there” they trust Allah, in this world they have faith in the doctors to see them through dif¤cult times. The particularities of the relationships between healthcare professionals and the people they attend to contrast in signi¤cant ways with the norms of healthcare systems in which the individual’s rights are central. The professional moral code in the Institute pivots on a belief in duties and obligations—of the physicians to save the life of the patient struck by life-threatening illness and of family members to help by donating a kidney. In this view, illness dehumanizes and makes a “victim” of the patient, and the patient is doubly victimized if healthy family members do not come forward to give a kidney. (The other “victims” on this stage are considered to be helpless females coerced by families into presenting as willing donors.) Physicians consider it their duty to use their culturally and religiously legitimized authority to correct what they perceive as injustices. In their role as patient advocates they practice a form of ferocious benevolence that pushes everything else to the periphery. Failure to ¤nd a kidney for the patient, and thus saving a life, is sensed by many as a failure to do their duty. In the ethical world of the Institute, patients have to be helped not because of any claims to rights or equality on their part, but precisely because they are seen as powerless and thus “unequal.” It is not that the staff is unfamiliar with contemporary arguments about autonomy and rights; it is merely that with the lives they see at stake these are peripheralized in a single-minded focus on duties of healthcare professionals toward the vulnerable. Professional authority is used to bring about what is considered to be in the best interest of the patient and, by extension, the entire family. In this process, the Western ideal of maintaining an objective, rational, therapeutic distance is replaced by emotional involvement in the lives of patients and their families. Physician-patient relationships in the Institute are a world apart from the contract between two “equal” parties, the client and the service provider, that characterizes (at least theoretically and legally)
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those relationships in the United States. In the Institute this relationship is closer to being ¤duciary in nature, relying on trust on the part of patients and families in need and a sense of duty on the part of the skilled professional toward them. This particular essence of patient-family-physician interactions, a product of long-standing indigenous historical, cultural, social, and religious construct, is played out within the context of terrible, existing socioeconomic realities. A combination of these factors generates some of the most troubling moral issues for the staff. Their ethical dilemmas do not revolve around issues of autonomy and rights but focus on what are perceived as social injustices leveled against those who have the least possibility to ¤ght back. Among the injustices, staff include insuf¤cient funds, resources, and services (and lack of attention to this by relevant government bodies) for management of end-stage renal failure, a disease which strikes the poor and devastates entire families; this is considered especially inexcusable when effective therapy (dialysis and kidney transplantation) is possible and, in fact routine.8 Another issue provoking moral outrage is when the staff suspects that a woman, powerless to protest, is being manipulated to donate a kidney by members of her family.9 The social worker with the deepest knowledge of the abject circumstances of many indigent patients and their families told me once, “humara samaj bohat zalim hey. Sochtee hun to mera dimagh mauf ho jata hey [our society can be very cruel. Sometimes when I think about it my brain becomes numb/goes dead].” This was after a particularly grueling clinic in which she had had to deal with several families who had appeared with female members as “willing” donors. Others talked about what they termed their daily “nonmedical dilemma” of trying to ¤nd enough time to ensure that vulnerable family members were not being coerced into donating (“We do not want to ruin one life in order to save another”), all the while aware that the clinic was teeming with patients waiting to be examined. One nephrologist wistfully remarked, “I wish I had only ten to ¤fteen patients to take care of. Then I would have time to talk with them.” Senior staff involved in locating and convincing family members to donate frequently describe this as extremely “stressful” for them
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but, in the absence of a cadaver organ program, consider it a professional duty they have to shoulder nevertheless. Their unease is expressed in statements such as, “I would prefer if I only had to make medical decisions,” or “I have to make decisions sometimes jo mera dil nahin manta hey [which my heart is not comfortable with].” A senior nephrologist told me once about the “very bad feeling” he experienced if a kidney obtained by persuading a family member went on to fail. Another ethically problematic area for the staff is the propensity for some kidney recipients not to show up for regular follow-up examinations as instructed, despite repeated explanations about the repercussions of not doing so. Physicians often face a similar situation in the long-term follow-up of donors in the special clinic established for this purpose.10 In the case of chronic “no-shows,” the staff sometimes resorts to threats (never carried out in actuality) to discontinue medications unless patients (or donors) return to be seen on a regular basis. Having to take this action is seen as an ethical dilemma by many. The social worker once told me, “We feel bad, embarrassed, about having to ‘blackmail’ them. But we get tired of telling them that they will lose the kidney, and still they do not come.” Using end-stage renal disease and kidney transplantation as a guide, my research was a journey in exploring and comprehending the “local” moral world of a busy hospital providing free services in Pakistan. It was a search for a better understanding of how patients and their families, and medical staff involved in their care, deal with tragic circumstances as a people with a shared history, value systems, and socioeconomic realities that are very different from the society in which contemporary bioethics was born. What I discovered was that the Institute I studied uses advanced medical science and technology that are no different from those in the best institutions anywhere in the world, but their application occurs in a vastly different universe. The problems and ethical issues the staff face are speci¤c to the local context—cultural, religious, and socioeconomic—within which interactions take place between staff and patients and their kin. The ethical concerns central to healthcare professionals in the Institute and their modes of ¤nding resolutions differ in signi¤cant ways from
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the experience of their counterparts in af®uent, modern societies. The moral universe of the Institute, if viewed through a prism circumscribed by “the common morality” fashioned through contextfree philosophical principles, becomes dif¤cult to decipher.11 Ethics and Pakistan: Future Directions
This research was undertaken at a time when contemporary bioethics, and its offshoot biomedical ethics, are being rapidly “globalized.” This ¤eld, rooted in Anglo-American analytic philosophy, is characterized by a reliance on philosophical ethical principles and a consciously secular outlook. It speaks in a language of individual rights and a freedom for individual patients to make choices regarding their treatments in the absence of undue external pressures. But the practice of medicine is a moral endeavor, and it is dif¤cult to divorce moral sensibilities and conduct from long-held, indigenously shared beliefs and value systems. My own experience on the faculty of a university in Pakistan and my recent ¤eldwork in the Institute con¤rm that the four ethical principles of Beauchamp and Childress are well known to the medical community in Pakistan.12 Every year, increasing numbers of international conferences, especially those related to research ethics (easier to fund through international sponsors) are being held in the country. In marked contrast to the United States, in Pakistan it is members of the healthcare community, especially physicians, who are the organizers and participants rather than philosophers, theologians, sociologists, historians, or “trained” bioethicists. Articles are beginning to appear in local scienti¤c journals, almost all written by physicians, on issues dealing with various aspects of bioethics.13 Yet paradoxically, in a country in which Urdu is still the primary language of communication in homes, clinics, and hospitals, all such discourse, oral and written, is occurring in English using the secular vocabulary of contemporary bioethics. In Pakistan, English is the accepted mode of imparting factual scienti¤c knowledge, including in medical schools, but is the preferred language for communication in daily lives of a relatively small percentage of people. These include the af®uent within Pakistani so-
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ciety and those who have had the advantage of being educated in private or “English medium” schools. Like many other developing countries, Pakistan imported advances in science and technology from the West in the second half of the last century; in the last two decades it seems to be doing the same where bioethics is concerned. The dif¤culty lies in the fact that comprehension of what is right or wrong, what constitutes ethical and unethical conduct within private and professional interactions, reaches beyond the concreteness of anatomy and pathophysiology to the complexities and nebulousness of experiential human existence. An integral part of this process is the shared language of thought and communication of a people. A majority of Pakistanis, including many medical professionals and scientists trained for periods of time in the West, think, re®ect, and speak in Urdu (or one of the dialects of the country).14 This is not dif¤cult to understand as language is an intrinsic component of cultural and national identity and is shaped by the collective history and experiences of people. In turn, common sensibilities and values held and shared over time shape the vocabulary and idioms particular to a society, including nuances that are intuitively understood but that may be dif¤cult to capture in translations into another language. This is just as true for people residing in Pakistan as it is for those in the United States. One of the dif¤culties I encountered during my interviews with physicians, patients, and their families was to ¤nd words and phrases in Urdu that accurately captured the meaning and essence of ethical terms in English. The scope of my present study did not include a linguistic analysis, but it may be interesting to present a few examples of such words. To begin with, terms such as ethics for physicians and medical ethics are commonly translated into Urdu as adab al-tabib and tibbi-akhlaq, respectively. Historically, the words adab and akhlaq (ethics) have come to incorporate a concept which is broader than “ethics” as used in contemporary bioethical dialogue and which is intuitively grasped by Urdu-speaking Pakistanis. Speci¤cally, these words are understood as describing a virtuous physician, an honorable individual with good character, who is polite and pleasant in social interactions, and not someone who merely acts ethically. The words adab and akhlaq emphasize the character of the
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acting agent (akin to Aristotelian virtue ethics) rather than focusing on the act alone. Another example I discovered was the term autonomy. An evolution of Anglo-European philosophical traditions, this secular concept conceives of a self-governing, rational agent with freedom to make his or her own choices and decisions. The Urdu word I found that came closest in meaning is khudmukhtari, but this fails to accurately capture the essence (a historical and social construct) of the word autonomy. Although Muslims believe in the importance of human reason and human will and agency, the ¤rst is seen as being imperfect, and the last two are interpreted as existing within boundaries that are divinely ordained. In the strict sense of the word, therefore, to Muslims it is only God who is a truly autonomous entity, khudmukhtar, completely free to act without external interferences.15 At a more mundane level, dif¤culties arise in conceptualizing a selfgoverning agent in a family-centered society which construes the self as relational rather than independent and emphasizes obligations to others over individual interests.16 In my opinion, an intriguing “linguistic disjunction” is noticeable as the discipline of ethics enters the clinical setting in Pakistan. I had observed this with interest in my own practice, and recently thoughtful members of the medical community have been recognizing and commenting on this phenomenon, too. Most healthcare professionals are knowledgeable about the four ethical principles that form the basis for American bioethics, but this knowledge appears to function primarily at a didactic level. Ethical principles form the basis for classroom lectures given in English to medical students and trainees, but as I have personally noted, when discussions begin on “ethical” issues dealing with actual clinical cases and how to address these, participants generally revert to Urdu. This is not surprising. In most clinics and hospitals a majority of healthcare staff employ Urdu for communicating with patients and families (the only language that most understand), and physicians continue to be guided by indigenous cultural and religious values. And it is terms and idioms in Urdu rather than English that best capture and actualize local ethical values, experiences, and practices. There is a need for greater recognition and understanding within
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Pakistan of this “lingual divide” and for thoughtful consideration of how to bridge the gap between the “ethics” of textual philosophical principles and the “ethics” of contextual lived experiences. In Pakistan, healthcare professionals, chie®y physicians rather than theologians, philosophers, lawyers, and others, will shape and set the trajectory for clinical ethics in years to come.17 For the thousands of distressed patients and their families, physicians who minister to them daily in the ®esh will continue to embody moral authority for them. Related to this is a growing desire within the medical community to learn more about indigenous value systems, especially those that can be traced to Muslim history or be discovered within contemporary discourse of Muslim scholars and ulema. Members of healthcare professions in Pakistan, products of their culture and familiar with local realities, are well positioned to contribute to and enrich the often philosophical, always secular, dialogue within contemporary bioethics. This is only possible, however, if, unlike the sometimes unquestioning way in which science and biotechnology have been transplanted into the country, they begin to re®ect on the moral complexities, the good and the bad, of their own culture. There is a similar need for American bioethicists to begin to re®ect on some of their own historical and social imprinting of their understanding of what constitutes moral interactions between society and its healers. In order to truly “internationalize” bioethics, the diversity of human voices and experiences must be brought into the fold. It is necessary to comprehend the many ways in which people experientially fashion and interpret concepts of dignity and respect for people, interpret caring for one another, and decide what constitutes ethical conduct between laypeople and those who assume responsibility for their health. It will serve us all well to move beyond the overdone and polarizing debates on the dichotomy of universalism and relativism, the individual and the community, the secular and the religious, West and East, and search for a better understanding of real lives of real people in actual societies. The research presented in this book is a step in this direction. There is a well-known parable by Jelaluddin Rumi, a Muslim Su¤, in which he describes people in a dark room attempting to
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explain what an elephant looks like. Each touches one part and visualizes the animal accordingly. To Rumi it is only by combining the experience of all those present in the room that the true picture of the entire elephant can be formulated. He says, “Each of us touches one place, and understands the whole in that way.”18 I suppose human morality is a bit like the elephant. Understanding it requires enlarging intelligible discourse between people who are quite different from one another in their history, culture, language, outlook on life, and moral values. Such dialogue is crucial, for as Geertz says, we are all contained in a world in which “it is increasingly dif¤cult to get out of each other’s way.”19
NOTES
Introduction 1. Beauchamp and Childress’s Principles of Biomedical Ethics is now in its ¤fth edition. Members of the medical community in Pakistan interested in bioethics are very familiar with this seminal text and its four secular ethical principles: autonomy, bene¤cence, non-male¤cence, and justice. For an overview of the birth of bioethics in Pakistan see Moazam and Jafarey, “Pakistan and Biomedical Ethics,” 249–255. 2. Healthcare professionals in Pakistan, a country in which humanities and social sciences do not form components of medical education, are far more conversant with “principlism” while generally unfamiliar with competing ethical theories (such as casuistry, communitarian, and care ethics) that now constitute an important part of moral discourse on ethics in societies in the West. In the few medical colleges in Pakistan that have recently introduced bioethics into their curriculum, the four principles—autonomy, bene¤cence, non-male¤cence, and justice—feature prominently in the theoretical education of medical students. These principles are also commonly referred to in the increasing number of seminars and conferences being held in the country on medical and research “ethics.” Although the recently updated Code of Ethics by the Pakistan Medical and Dental Council (PMDC) devotes two general pages to “Medical Ethics in Islam,” it nevertheless draws heavily on the language of the four ethical principles from the book by Beauchamp and Childress. See Pakistan Medical and Dental Council, Code of Ethics for Medical and Dental Practitioners. 3. Islam is the of¤cial religion of Pakistan, and the Constitution declares that there can be no laws in the country that are “repugnant to Islam.” 4. Moazam, “Families, Patients and Physicians in Medical Decisionmaking,” 28–37. 5. Plural of madressa. These institutions focus primarily on education in Islam including teachings of the Qur’an and Hadith and Muslim history. Some combine this with education in “modern” disciplines. 6. Maulvis is a term often used for men who lead prayers in mosques. Many of them, particularly those who have memorized the Qur’an, are deeply respected by the general masses but are not to be equated with the ulema (Muslim scholars) who have received formal education in ¤qh (jurisprudence) or kalam (theology). 7. In Islam, family obligations are considered moral injunctions from God, and ¤lial loyalty and kindness are emphasized in several suras (chapters) of the Qur’an. See, for example, verse 17:26. A well-known, and oft-quoted, Hadith of the Prophet is that the best beloved of God is one who loves his family and kin the most. The Prophet is also recorded as frequently emphasizing that all Muslims are
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brethren and that the pain of one must be felt by the entire community. For examples of contemporary discussion of the strong communal and social ethos within Islam, see Rahman, Major Themes of the Qur’an, 42; Sachedina, Islamic Roots of Democratic Pluralism, 76–77. 8. Examples of discussions by fuqaha and ulema about new issues in medicine and health sciences include Al-Gindi, Human Reproduction in Islam; Hathout, Topics in Islamic Medicine; El-Gindi, Islamic Organization on the Medical De¤nition of Death; Al-Mazkur, Al-Saif, Al-Gindi, and Ghudda, Islamic Vision of Some Medical Practices. For publications focusing on Islam and ethics in general see Nanji, “Medical Ethics and the Islamic Tradition,” 257–275; Rispler-Chaim, “Islamic Medical Ethics in the 20th Century,” 203–208; Daar and Khitamy, “Bioethics for Clinicians,” 60–63; Haleem, “Medical Ethics in Islam,” 1–14; Sachedina, “Ideal and Real in Islamic Law,” 15–32. For a more general account and analysis of historical debates on the epistemology of morality in Islam, see Hourani, Reason and Tradition in Islamic Ethics; Fakhry, Ethical Theories in Islam. 9. For representative examples see Sachedina, “Islamic Views on Organ Transplantation,” 1084–1088;Yaseen, “Rulings for the Donation of Human Organs,” 303–340. For more references on this issue, see chapter 2. 10. Sha¤, Insanee A’da kee Paiwandkaree, 29–38; Sha¤, Jadeed Masael kay Shar’i Ehkaam (Lahore, Pakistan: Mecca Kitab Ghar), 28–29; Rehmani, Jadeed Fiqhi Masael, 388–409. 11. Islam does not have a centralized “Church” to provide uniform rulings. The fatawa are religious opinions that are based on the considered judgment and interpretations of ulema employing accepted religious sources. They can vary from one scholar to the next and are therefore not considered binding for all Muslims. Historically, such a diversity and ®exibility has been considered a strength within Islam. 12. In 1981, during an international conference in Kuwait of Muslim scholars and physicians, an elaborate code of ethics was formulated for Muslim physicians with reference to scriptural guidance. The conference was organized by the Islamic Organization for Medical Sciences, which also arranges similar conferences every other year to discuss Islamic perspectives about moral dilemmas of modern medicine and technology. See “Islamic Code of Medical Ethics.” 13. Among the few examples of comprehensive sociological studies on organ transplantation that include live kidney donation is the long-term research initiated by the medical sociologist Renee C. Fox and her collaborator Judith P. Swazey in the early 1970s, Courage to Fail. Also see Fox and Swazey, Spare Parts. Another early sociological study and one that deals primarily with live, related kidney donation was conducted by Roberta G. Simmons and her colleagues in the 1970s. See Simmons, Marine, and Simmons, Gift of Life. 14. Groth, “Presidential Address 2002,” 1098–1100. Groth provides a good overview of solid organ donation practices internationally including the progressive increase in the number of living donors. 15. The anthropologist Ruth Benedict is well known for her analysis of beliefs and values of “other” cultures and her juxtaposing them to highlight and question those in the United States. For an insightful report on the genre of her work, see Geertz, Works and Lives, 102–128.
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16. Childress, Practical Reasoning in Bioethics, 32. 17. Pakistan to this date does not have a cadaver organ donation program in place. A legislative bill introduced in the Parliament dealing with tissue and organ transplantation and brain death criteria is yet to be discussed and passed. 18. Kleinman, “Moral Experience and Ethical Re®ection,” 69–97. 19. Geertz, Interpretation of Cultures, 24. 20. Many common Urdu words are derived from an Arabic root such as haq (rights, truth, obligations) and adl (balance, justice). In their usage during a conversation, what such words “mean,” their “essence,” can be contextual and nuanced rather than exact and concrete. 21. My use of the word benevolence (rather than bene¤cence) throughout this book is deliberate as it captures the notion of generosity, kindness, and “doing good” by people in positions of authority. Bene¤cence does not include this particular understanding of doing good to others. 22. The Book of Job, trans. Stephen Mitchell (New York: HarperCollins, 1992), 21. Job is also mentioned in the Qur’an on four occasions (as the Prophet Ayub) as af®icted by misfortunes which he bore patiently. The story does not offer the details one ¤nds in the Bible. 23. Arthur Kleinman, “The Moral and the Medical: The Stakes of Social Experience,” in Messikomer, Swazey, and Glickman, Society and Medicine, 247.
1. The Stage 1. The Urdu word sahib is derived from an Arabic root and means “companion,” “comrade,” but also “lord and master.” In Pakistan, addressing someone as sahib signi¤es respect and deference. It is always attached to the ¤rst name of the addressee. 2. In Pakistan, referring to someone as “Sir” denotes a sense of deep respect. It is used by laypeople, particularly the less literate, to address those perceived as being in authority or holding a high status within an organization. Curiously, this term is often “gender blind.” During the years in which I was chair of the department of surgery in a university in Pakistan, I was frequently addressed as “Sir” by many of the clerical and technical staff. Others referred to me as “Madam.” 3. United Nations Development Programme (UNDP), Human Development Report 2000, 191; World Health Organization, World Health Report 1999, 92–93. 4. Rizvi and Naqvi, “Renal Transplantation in Pakistan,” 300. 5. There is growing concern in Pakistan that the country is rapidly becoming a center for the sale of organs; it is reported that about two thousand kidneys are bought each year by af®uent patients, many of whom are “foreigners” ®ying in from the Middle East for transplantation. Donors are almost all indigent villagers who “are impelled by poverty” and see this as a way “to pay off mounting debts.” See “Sale of Kidneys,” editorial, Dawn (Karachi), 13 June 2005, and Abid Mehdi, “Jobless Youths Offer Kidneys for Sale,” Dawn, 2 June 2005. A bill to regulate transplantation, recognize brain death criteria, and legalize cadaveric donation programs was presented to the Pakistan Senate in 1992 but has not yet been acted upon. For a good analysis of related issues and possible reasons behind a resistance
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to passing a transplantation law in Pakistan, see Zubeida Mustafa, “Temporizing on Transplant Law,” Dawn, 27 April 2005. 6. Naqvi and Rizvi, “Constraints in Living Donor Kidney Transplantation,” 1483–1484. 7. Naqvi, “Community Involvement in Increasing Transplant Activity,” 3280– 3281; Rizvi and Naqui, “Current Issues and Future Problems,” 2623–2625; Jamil, Kumar, and Naqvi, “Predictors of Mortality in Hemodialysis,” 58–60; Rizvi, “Present State of Dialysis and Transplantation,” xlv–xlviii. 8. “Making the ‘Miracle’ Serve,” editorial, Dawn (Karachi), 23 March 1996; “Legal Cover for Cadaver Donation Demanded,” Dawn, 23 January 2002; “Law on Cadaver Transplant in Of¤ng,” Dawn, 26 January 2003. 9. Rizvi and Naqvi, “Current Issues and Future Problems,” 2623. 10. One of the most thorough historical accounts of the evolution of Muslim jurisprudence and the in®uence of social and political factors in this process is provided in Rahman, Islamic Methodology in History. Also useful is Hallaq, History of Islamic Legal Theories. For a historical survey of the development of Sunni as well as Shi’i theological thought, see Watt, Islamic Philosophy and Theology. For an account of the role of reason and revelation, both complimentary and adversarial, in derivation and application of Muslim moral thought see Hourani, Reason and Tradition in Islamic Ethics. For a critical review of some problems that are inherent to the ways in which Islamic law has evolved, see Sachedina, “Ideal and Real in Islamic Law,” 15–32. 11. Al-Mazkur, Al-Saif, Al-Gindi, and Ghudda, Islamic Vision of Some Medical Practices. 12. Schacht, Introduction to Islamic Law, 112–115. Schacht gives a very good account of the classical and secondary roots of Shari’a and their historical utilization by Muslim fuqaha. For a socio-historical discussion of the evolution of Shari’a and its primary and secondary sources, see Hodgson, Venture of Islam, 315–358. Also see Kamali, “Law and Society,” 107–153. 13. Haleem, “Medical Ethics in Islam,” 1–14. Haleem provides a concise account of these secondary principles in his discussion of “modern” medical interventions. Also see Daar, “Current Practice and the Legal, Ethical, and Religious Status,” 291–299. 14. Sachedina, “Islamic Views on Organ Transplantation,” 1084–1088; Yaseen, “Rulings for the Donation of Human Organs,” 303–340; Ebrahim, Organ Transplantation, Euthanasia, 49–67; El-Gindy, Islamic Organization for Medical Sciences on the Medical De¤nition of Death. 15. Sha¤, Insanee A’da kee Paiwandkaree, 29–38; Sha¤, Jadeed Masael kay Shar’i Ehkaam, 28–29. For the proceedings of a meeting of South Asian ulema in the late 1980s in which several of the participants argue against cadaveric donation, see Rehmani, Jadeed Fiqhi Masael, 388–409. 16. Ebrahim, Organ Transplantation, Euthanasia, 64. 17. Moosa, “Languages of Change in Islamic Law,” 161–197. The unease and skepticism toward “medical” criteria of brain death is also found among the Japanese, who are members of a “developed” nation. See Ohnuki-Tierney, “Brain Death and Organ Transplantation,” 233–242. For another interesting sociological analysis of Japanese views on the U.S. approach to organ transplantation, see
Notes to pages 35–54
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William R. LaFleur, “Transplanting the Transplant: Japanese Sensitivity to American Medicine as an American Mission,” in Messikomer, Swazey, and Glicksman, Society and Medicine, 87–107. 18. Yaseen, “Rulings for the Donation of Human Organs,” 310–311. 19. My review of the data on the ¤rst 950 transplants done in the Institute revealed that 50.9 percent of donors were siblings (two-thirds of whom were brothers), and 31.7 percent were parents (roughly two-thirds of whom were mothers). An almost equal number of kidneys were obtained from spouses (5.5 percent) and offspring (5.7 percent). The remaining donors included an assortment of uncles, aunts, cousins, and other family members. 20. Rizvi, “Present State of Dialysis and Transplantation,” xlviii. 21. Zakat is the mandatory “wealth tax” on income and ¤xed possessions that all (Sunni) Muslims must give once a year to help the needy and indigent in the community. Zakat is considered one of the ¤ve pillars of Islam. 22. Both the Qur’an (see verses 9:71 and 49:10) and Sunna are explicit about obligations toward kin and “brethren” of the community. A much-quoted saying of the Prophet among Muslims is that the best beloved of God is one who loves his family the most. Also see Rahman’s discussion of the Qur’an’s emphasis on ¤lial loyalty and honoring bonds of community in Major Themes of the Qur’an, 41–42; and see Esack, Qur’an, 178–182. 23. Beauchamp and Childress, Principles of Medical Bioethics, 51. 24. Naqvi and Rizvi, “Constraints in Living Donor Kidney Transplantation,” 1484. 25. Nizamuddin Siddiqui, “1 Institute Feels the Pinch as Government Delays Grant,” Dawn (Karachi), 19 November 2003. 26. “1 on Life-Saving Mission,” Dawn (Karachi), 20 January 1996, 5; Asif Noorani, “The Zeal Is More Than Missionary,” Star Weekend (Karachi), 30 January 1999, p. 3; “Let There Be Hope,” Dawn, 1 January 2001, p. 37; “Postgraduate Study Center at 1 Opens,” Dawn, 25 January 2002; “1: Welcome Expansion,” editorial, Dawn, 26 January 2002. 27. The animals used for research were housed on the roof of one of the old buildings of the Institute. These included pigs, which are considered haram (unclean, forbidden) by Muslims. A favorite story I heard, related with considerable mirth, was how a pig once escaped into the hospital courtyard and ran around among horri¤ed people until it was captured. 28. Due to many reasons, including expense, lack of appropriate equipment, concern for high infection rates, etc., continuous ambulatory peritoneal dialysis (CAPD) done at home is not feasible. The alternative is peritoneal dialysis (PD) in the hospital setting over a couple of days or more, an option utilized by the Institute generally for those who are not considered candidates for renal transplant due to medical reasons. PD is dreaded by patients and families alike and is occasionally used as a “threat” to pressure family members to donate. 29. Sattar Edhi is a philanthropist who runs homes in Karachi for the destitute, including women and orphans, and who also buries unclaimed bodies. 30. Brody, Healer’s Power, 16–18. 31. Senior clinicians in government teaching institutions are allowed private practice in the evenings. The Institute is now the only exception to this with all
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full-time faculty, including Dr. Ahmed, drawing a ¤xed salary irrespective of the number of patients they manage. 32. Donnelly, Oman, and Opelz, “Culture-Based Gender Bias,” 1882–1883. 33. UNOS Scienti¤c Registry Data, 5 September 2000. 34. The Urdu word dant, or dantee, can be literally translated as “scolding,” “chiding,” “reprimanding,” or “expressing anger,” but the context in which it is used gives it a particular meaning. The dant, when used by parents or those perceived as “elders,” and the baree (feminine ending) or bara (masculine ending), when used toward “younger” (in age or experience) members within a family system are generally perceived as a caring gesture of somebody who has the wisdom and authority of age, experience, and sometimes status and who has your interest at heart. The receivers of the dant may be referred to as bacha/bachon/bachey (child/children) even if they are adults and not much younger than the scolder. (For example, Dr. Badar commented that he reacts to adult children’s reluctance to donate a kidney to an ailing parent with a “dant deta hun bachon ko [scolding of the children].”) The word dant featured heavily in the lexicon of the staff in the Institute both toward each other (senior to junior staff ) and to patients and their families.
2. Webs of Relationships and Obligations 1. C. Taylor, Sources of the Self, 28. 2. Dumont, Essays on Individualism, 215–262. Dumont’s classical treatise analyzes the historical development of individualism and the acceptance of the “human individual as a value” in the ideology of modern Anglo-European and American societies. A belief that the rise of individualism represented an “evolution” of society from more primitive forms is echoed by social scientists of the nineteenth and early twentieth centuries. As an example, Emile Durkheim considered that “lower societies” reveal a “slighter development of individuality” in which “everything is common to all,” and the “individual confounds itself with that of the race.” See Durkheim, Elementary Forms of Religious Life, 17–19. Concepts of an abstract, generic man divorced from cultural contexts came to be criticized by social scientists of later generations. For a contemporary anthropological critique of the belief in an “ahistorical, acultural man,” see Geertz, Interpretation of Cultures, 33–54. 3. Dumont, Essays on Individualism, 260–262. 4. Lukes, Individualism, 26–29, 125–131, 99–106. Lukes provides one of the most informative monographs tracing the evolution of individualism, “a catchword of immense ideological signi¤cance,” in the United States, and its seminal in®uence in the country on personal, social, cultural, political, religious, and ethical domains. See as an example Ralph Waldo Emerson, Essays and Lectures (New York: Library of America, 1983), 70. Emerson, an in®uential nineteenth-century U.S. philosopher, was one of the greatest proponents of American individualism, describing each man “as a sovereign state.” For a critical review of how individualism shapes contemporary American social mores see Robert N. Bellah, “The Quest for the Self: Individualism, Morality, Politics,” in Rabinow and Sullivan, Interpretive Social Science, 365–383. 5. Jonsen, Birth of Bioethics. Jonsen provides a historical analysis of the birth
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of bioethics in the United States and identi¤es ways in which philosophical and theological thought and the government contributed to it. In the ¤nal chapter he discusses the social reasons and circumstances that are responsible for the growth of bioethics in the country. 6. Messikomer, Fox, and Swazey, “Presence and In®uence of Religion,” 485– 508. The authors provide an overview of the role of religion in the evolution of bioethics in the United States, its current status, and its possible future in®uence. 7. Beauchamp and Childress, Principles of Biomedical Ethics, 63, 104. First published in the early 1970s and now in a ¤fth edition, this book remains the seminal text in American bioethics. It lays out four prima facie bioethical principles (Respect for Autonomy, Non-male¤cence, Bene¤cence, and Justice), also referred to as “Principlism,” which form the basis for a common morality. The authors note the “fundamental requirement” for autonomy of patients and a “professional obligation” to respect the patients’ choices. In this latest edition of their book, however, Beauchamp and Childress add that construing the ¤rst principle (autonomy of patients) as having a priority over the other three is giving “it too much weight.” The continuing focus in the U.S. on patient autonomy and its con®icts with physician bene¤cence is analyzed in Tauber, “Sick Autonomy,” 484–495. Also see Arthur Kleinman, “The Moral and the Medical: The Stakes of Social Experience,” in Messikomer, Swazey, and Glicksman, Society and Medicine, 243–254. For the debate on a “common morality” that is applicable universally, see Cherry, “Search for a Global Bioethics,” 683–698; Beauchamp, “Defense of the Common Morality,” 259–274. 8. Pakistan is representative of many Asian societies, including Japan, which have predominantly “collectivistic” cultures. For a comparative analysis of the characteristics of individualistic versus collectivistic societies, see Triandis, Individualism and Collectivism. Psychosocial research by Markus and Kitayama focuses on the construal of the “self,” implications for emotions and social behavior, and a sense of what constitutes right or wrong behavior in such cultures. The authors analyze how these differ from norms of societies that are primarily “individualistic” in nature. See Markus and Kitayama, “Culture and the Self,” 224–253; Markus and Kitayama, “Cultural Construction of Self,” 89–130. Also useful are Singelis, “Measurement of Independent and Interdependent,” 580–591; Kagitcibasi, “Critical Appraisal of Individualism and Collectivism,” 52–65; Kagitcibasi, “Autonomous-Relational Self,” 180–186. For a feminist perspective on rights-based versus obligations-based cultures, see Narayan, “What Do Rights Have to Do,” 186–199. 9. English, “What Do Grown Children Owe,” 351–356; Kuczewski, “Reconceiving the Family,” 30–37; Nelson and Nelson, “Family,” 801–808. 10. Moazam, “Families, Patients, and Physicians,” 28–37. 11. Kleinman, “Anthropology of Medicine,” 1667–1673. 12. The importance of solidarity of family and blood kin is emphasized in both the Qur’an and Sunna. The Qur’an has several verses that exhort justice toward brethren and blood kin and obligations to assist family (especially parents). See, for example, verses 17: 23, 24:22, 2:177, and 16:90. The Prophet is reported to have said, “none of you truly believes until he wishes for his brother what he wishes for himself.” Also see Rahman, Health and Medicine, 30–31. 13. The belief that duties and obligations take priority over rights in Islam is
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re®ected in the Islamic Declaration that came out of the International Islamic Conference held in Paris in 1980. See “Universal Declaration of Human Rights,” in Nazeer, Islam and Black Muslim Roots, 79. 14. Rosen, Justice of Islam, 153–156, 185. For a lexical discussion of the two terms adl and quist, used by the Qur’an for the notion of justice and its application in society, see Ayoub, “Islamic Concept of Justice,” 19–23. 15. Geertz explores kinship terms employed in the Balinese culture and notes how these contribute in important ways to social intercourse and the “Balinese notion of personhood.” Although the Pakistani kinship terminology is distinctive from that of Bali, these Pakistani “names” also serve to formulate strong aspects of one’s identity as a person in relationship to others. See Geertz, Interpretation of Cultures, 372–375. 16. Zaman, “Psychotherapy in the Third World,” 314–20; Zaman, “Adaptation of Western Psychotherapeutic Methods,” 65–87. 17. Fetters, “Family in Medical Decision Making,” 132–146. 18. Rahman, “Islam and Medicine,” 585–597; Hathout, Topics in Islamic Medicine. Also see “Islamic Code of Medical Ethics.” This detailed code for physicians clearly describes the role of healthcare professionals as fard kifaya, a collective (religious) duty of the Muslim community. 19. A morality in which the “privileged” are considered to owe greater obligations has religious roots. The Prophet is reported to have said that there is no distinction among believers except in knowledge. From this has been inferred that legally the more knowledgeable can be held to a higher standard of responsibility. For an elaboration of this interesting concept see Rosen, “Justice in Islamic Culture and Law,” 35–37. 20. An important premise of modern bioethics is the concept of respect for the dignity of persons as self-governing agents. For an analysis of various forms of individualism, including ethical individualism, and their evolution in AngloEuropean thought, see the classic text Lukes, Individualism, 99–106, 125–136. Also useful is Dumont’s tracing of the ideology of modern, secular individualism and its roots in early Christianity and his elaboration of issues of social theories versus social practice. See Dumont, Essays on Individualism, 23–66. 21. Iqbal, Mysteries of Sel®essness, 5–7. Iqbal was a philosopher and poet of the sub-Indian continent who is revered by Pakistanis as the spiritual father of their country and who is considered as one of the most important formulators of the ideals that lie behind the creation of their homeland. 22. Markus and Kitayama, “Culture and the Self,” 229. 23. Ibid., 241. 24. Ludmerer, Time to Heal, 43–44. 25. Brody, Healer’s Power, 264. 26. Renee C. Fox, “The Human Condition of Health Professionals,” in Essays in Medical Sociology, 577–578. 27. Tauber, Confessions of a Medicine Man, 27. 28. Markus and Kitayama, Culture and the Self, 235; Markus and Kitayama, “Cultural Construction of Self and Emotion,” 102–103. 29. This seemed to echo the sentiment behind the metaphor ghar kee baat (internal matter of the home) used by Dr. Ahmed when advising nurses to decline interviews with journalists about the transplant program.
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30. Beauchamp and Childress, Principles of Biomedical Ethics, 49–51. 31. Spital, “Living Organ Donation,” 234. Spital’s argument is based on a belief in the altruism of humans, and perhaps also on a cultural understanding of individuals as autonomous, self-governing individuals with a right to make their own decisions. Surveys of U.S. public opinion have been far more open to live, including unrelated, organ donation than is the case with U.S. transplant teams. 32. As I discuss in chapter 1, I believe that it is the shared belief in the Institute that many women are powerless and must be protected, but it is especially the role of these two women that is largely responsible for the equal male to female donor ratio in the Institute, a fact that may be unique in the realm of living kidney donation and transplantation. 33. Gass, Fiction and the Figures of Life, 40.
3. Giving and Receiving Kidneys 1. Clifford Geertz, “Being Here: Whose Life Is It Anyway?” in Works and Lives, 130. 2. See, for example, Alshaibani, Raza, Alfurayh, Almeshari, Qunibi, Alahmadi, Alsabban, and Sanjad, “Kidney Transplant Program at King Faisal,” 3103– 3105; Rizvi and Naqvi, “Current Issues and Future Problems,” 2623–2625; Kandela, “Gulf Countries to Reconsider”; Rizvi and Naqvi, “Kidney Transplantation in Pakistan,” 381–382. 3. Daar and Marshall, “Culture and Psychology,” 124–132; Daar, “Cultural and Societal Issues,” 1480–1481; Kececioglu, Turner, Akaydin, and Yakupoglu, “Attitudes of Religious People,” 629–630; Taghavi, Mahdavi, and Toufani, “Psychological Effects of Kidney Donation,” 2636–2637. These articles offer some examples of the nature of writings in scienti¤c literature about “non-medical” aspects of organ donation in non-Western societies. 4. A. S. Daar, “Prospects of Organ Sharing and Strategies for Increasing Transplants in Asia,” Transplantation Proceedings 30 (1998): 3649; Divakar, Thiagarajan, and Reddy, “Ethical Aspects of Renal Transplantation,” 3626; Reddy, “Unconventional Renal Transplantation in India,” 910–911. 5. Kass, “Thinking about the Body,” 20–30; Andrews, “My Body, My Property,” 31–41. 6. Marshall, “Organ Transplantation,” v–viii; Fox, Essays in Medical Sociology, 115–121; Sharp, “Organ Transplantation,” 357–389; Joralemon, “Organ Wars,” 335–356. 7. Marshall, Thomasma, and Daar, “Marketing Human Organs,” 1–18; L. Cohen, “Where It Hurts,” 135–165; Scheper-Hughes, “Rotten Trade,” 197–226, and “Small Wars and Invisible Genocides,” 889–900. 8. Beauchamp and Childress, Principles of Biomedical Ethics, 50; Spital, “Public Attitudes towards Kidney Donation,” 1061–1064. 9. Jonas, “Philosophical Re®ections on Experimenting,” 1–31. 10. Fox and Swazey, Courage to Fail, 5–39; Fox and Swazey, Spare Parts, 31–48. 11. Mauss, Gift. Mauss emphasizes that gifts have not merely material value but also emotional and symbolic components creating a bond between the giver and the receiver. A failure to reciprocate therefore holds negative repercussions for the relationship.
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12. Fox and Swazey, Spare Parts, 33–42; Fox and Swazey, Courage to Fail, 32–39. 13. Fox and Swazey, Spare Parts; Fox and Swazey, Courage to Fail, 7, 35. 14. Beauchamp and Childress, Principles of Biomedical Ethics, 49–51. 15. Simmons, Marine, and Simmons, Gift of Life. 16. UNOS data indicates that in the last ten years the greatest increase in the number of donated organs has come from the living, with an increase of 134 percent. In comparison, cadaver organ donation has increased by 42 percent. In 2001, living donations surpassed the number of cadaveric donations in the United States. For an overview of the worldwide trends in live versus cadaveric donation, see Groth, “Presidential Address 2002,” 1098–1100. 17. Simmons, Marine, and Simmons, Gift of Life, 164–188. 18. Ibid., 188–190, 444–450. 19. Ibid., 445–458. 20. Senior healthcare professionals in the Institute with whom I spoke are unanimous that buying of organs is a morally reprehensible act, and that physicians and surgeons who are party to this practice are unethical. It is widely known that individuals who sell their kidneys are largely indigent, uneducated individuals from some of the remote villages in Pakistan. (No formal “studies” have been done, but the public press frequently carries interviews with such donors.) Kidneys are sold to pay off debts, pay for expenses of marriage, in states of joblessness, and occasionally to use the money to buy a relative’s freedom from working as a “bonded” laborer. The director of the Institute is among the most vocal in his criticism of this practice; to him this is a failure of civil society in which rules are made to suit the rich and exploit the poor. For his interview with a local newspaper on this issue see Zobeida Mustafa, “Temporizing on Transplant Law,” Dawn (Karachi), 27 April 2005. 21. Kleinman, “Moral Experience and Ethical Re®ection,” 69–71. 22. In Islam, family obligations are considered moral injunctions from God, and ¤lial loyalty and kindness are emphasized in several suras (chapters) of the Qur’an. Verse 17:26. The Prophet is commonly reported to have said that the best beloved of God is one who loves his family and kin the most. See, for example, Rahman, Major Themes of the Qur’an, 42; Rahman, Health and Medicine, 30–31. 23. The use of the metaphor of a “gift” for the donated organ, living or cadaveric, is characteristic of European and North American societies, perhaps rooted in what Renee Fox has termed as a Judeo-Christian ethos of helping the stranger. This does not seem to be the case in many Asian cultures. As an example, the sociologist Margaret Lock, who has studied organ donation extensively in Japan, notes that the metaphor of “gift of life” is not used in that country. See Lock, “Cultural Aspects of Organ Donation,” 1345–1346. For an overall analysis of the cultural and sociological aspects of organ donation in Japan and the ways in which these differ from organ donation in the United States, see Ohnuki-Tierney, “Brain Death and Organ Transplantation,” 232–242. 24. Ahmed, “Colonial Encounter in the North-West Frontier Province,” in Pakistan Society, 122–127. 25. Jawad, Hussain, Ahmed, Akhtar, Hussain, Sheikh, Aziz, Ahmed, Naqvi, and Rizvi, “Problems of Donor Selection,” 3643; Akhtar, Mazhar, Ahmed, Jamal,
Notes to pages 154–169
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Naqvi, and Rizvi, “Donor Selection in Living Donors,” 3385; Naqvi and Rizvi, “Constraints in Living Donor Kidney,” 1483. 26. One of the earliest analyses of the relationship of magic, science, and religion is provided by Bronislaw Malinowski. Although he based his essays on ¤eldwork among “primitive” people, this interconnection continues in many ways even among “modern” people of many societies. See Malinowski, Magic, Science and Religion. The ¤rst classical writing on this issue, a voluminous work of “armchair” anthropology, prior to establishment of formal ¤eldwork is Sir James George Frazer’s Golden Bough. One of Frazer’s premises is the order of succession in human evolution from magic to religion to science. 27. Arthur Kleinman, Paul E. Brodwin, Byron J. Good, and Mary-Jo DelVecchio Good, “Pain as Human Experience: An Introduction,” in Good, Brodwin, Good, and Kleinman, Pain as Human Experience, 8–10; B. J. Good, Medicine, Rationality and Experience, 5–12. 28. B. J. Good, Medicine, Rationality and Experience, 15–20; Smith, Belief and History, 41–48. Smith, a historian of religions, traces the changing semantics and connotations of the word belief in the English language from its religious origins to modern times. Also see Moazam and Zaman, “At the Interface of Cultures,” 246–258. Also relevant is the superb presentation and analysis by Fadiman of the con®icts between the medical world (a hospital in California) and Hmong culture in the care of a child with severe epilepsy. Fadiman, Spirit Catches You. 29. Kleinman, “Pain and Resistance,” 169–172. 30. Khare, “Dava, Daktar, and Dua,” 837–848. 31. This is a vast subject covered in several extant historical documents and contemporary literature, the details of which are beyond the scope of this study. For example, see Al-Jauziyah, Al-Tib al-Nabwi. This massive treatise by al-Jauziyah, a renowned Muslim theologian who died in the thirteenth century, deals with the duties and traits of physicians and also describes in great detail illnesses and the speci¤c food, prayers, and Qur’anic verses that help in their cure. See also Rahman, “Islam and Health,” 149–172; Browne, Islamic Medicine. The latter is a collection of lectures by British physician Edward G. Browne, delivered in Cambridge in the 1920s, which trace the history of medicine in Islam beginning from the early years of Islam. 32. Khare, “Dava, Daktar and Dua,” 838, 844. 33. Malinowski, Magic, Science and Religion, 89 (page citation is to the reprint edition). 34. Ohnuki-Tierney, Illness and Culture in Contemporary Japan. The author discusses how, despite modernization and industrialization, in the case of illnesses the Japanese continue to employ “medical pluralism” that includes, besides modern medicine, kanpo (traditional medicine), visits to shrines and temples, and appeals to deities and Buddha. 35. Renee C. Fox, “Exploring the Moral and Spiritual Dimensions of Society and Medicine,” in Messikomer, Swazey, and Glickman, Society and Medicine, 261. 36. Al Bukhari, Sahih Al Bukhari, 7:36–38; Muslim, Sahih Muslim, 2:339–340. 37. Fox and Swazey, Courage to Fail, ix. 38. Clifford Geertz, “Thick Description: Toward an Interpretive Theory of Culture,” in Interpretation of Cultures, 29.
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4. A Surgeon in the Field 1. Geertz, Works and Lives, 10, 129–132. Comparing the anthropological writings of Bronislaw Malinowski, Claude Levi-Strauss, E. E. Evans-Pritchard, and Ruth Benedict, Geertz demonstrates how each offers a unique style in focus and “interpretation.” 2. Fox, Experiment Perilous: Physicians and Patients Facing the Unknown, 210– 236. In her groundbreaking ¤eld study conducted in the 1950s on patients and physicians within a hospital setting, the medical sociologist Fox analyzes the ways in which pre-existing attitudes and values of the protagonists (patients) helped to shape the ways in which they perceived her role and relationship with them. 3. Ibid., 79. While analyzing the works of eminent anthropologists, Geertz writes that over time ethnography has progressively taken a more open “introspective turn.” He notes that “to be a convincing ‘I-witness,’ one must, so it seems, ¤rst become a convincing ‘I.’ ” 4. See, for example, Ohnuki-Tierney, Illness and Culture in Contemporary Japan; Khare, Culture and Democracy; Abu-Lughod, “Romance of Resistance,” 41– 55. “Native” anthropological work is a comparatively recent phenomenon as opposed to Western anthropologists studying their own or “non-Western” cultures. 5. Pakistan has no national health insurance schemes or third-party payers, and people pay cash for services. Public (government) clinics and hospitals provide “free” service, but poorly equipped and overwhelmed with patient volumes as they are, patients are often expected to buy and provide items such as medications, infusions, and even suture materials for surgery. 6. Bosk, “Professional Ethicist Available,” 47–68. Also see physician-philosopher Alfred Tauber’s discussion of “the professionalization” of medical ethics in the United States in Tauber, Confessions of a Medical Man, 93–95. 7. The norms of physician and therapist relationships with patients and families in cultures with a non-Western orientation have been the subject of several psychosocial studies. See, for example, Zaman, “Adaptation of Western Psychotherapeutic Methods,” 65–87; P. J. L. Donnelly, “Impact of Culture on Psychotherapy,” 12–15; McIntyre, “Family Therapy in Portugal and the U.S.,” 1–51. Also see Fetters, “Family in Medical Decision Making,” 132–146; Moazam, “Families, Patients and Physicians,” 28–37; Moazam, and Zaman, “At the Interface of Cultures,” 246–258. 8. The overseas invited speakers included physician Joanne Lynn, anthropologist Patricia Marshall, and medical sociologist Renee C. Fox. For a synopsis of the activities in bioethics at the university, see Jafarey, “Bioethics Group of the Aga Khan University,” 165–166. 9. James F. Childress is Edwin B. Kyle Professor of Religious Studies and professor of medical education at the University of Virginia and the co-author of the in®uential text Principles of Biomedical Ethics. Abdulaziz Sachedina is also professor of religious studies at the University of Virginia and a senior associate at the Center for Strategic and International Studies. 10. This phenomenon was perhaps ¤rst brought to light in the posthumously published, and much debated, “diary” of Malinowski, who is acknowledged as
Notes to pages 184–199
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being the ¤rst to embark on actual “¤eldwork” in contrast to the “armchair anthropology” of his times. His entries related to ¤eldwork in the Trobriands speak of his despair at being stranded far away from people of his own kind and his sense at times of the remoteness of the natives’ lives from his own. His book is considered to be a precursor of “re®exive” ethnography that is now widely accepted and considered an important component of reporting ¤eldwork. See Malinowski, Diary in the Strict Sense. Also see Bowen, Return to Laughter. In this introspective book on her study of an African “tribe,” Bowen (a pseudonym of anthropologist Laura Bohannan) reports her feeling of cultural isolation, of being a “stranger,” and her sense that it was an illusion that those she was studying would ever be wholly open with her. 11. Emerson, Fretz, and Shaw, Writing Ethnographic Fieldnotes, 212–216. One of the best descriptions and analyses of the process of “socialization” of the researcher in the ¤eld is perhaps offered by the medical sociologist Renee C. Fox in her account of her research conducted in the 1950s in a Boston hospital. See Fox, Experiment Perilous, 210–236. Also useful in understanding the evolving role of the researcher in the ¤eld is William Foote Whyte’s classical sociological study of a community in Boston, Street Corner Society, 279–366. 12. For a good discussion of the advantages and disadvantages of “native” anthropologists conducting ¤eldwork in their indigenous cultures, see OhnukiTierney, Illness and Culture in Contemporary Japan, 16–18. 13. Ethnographic sociological research in the ¤eld, particularly of the type that I was undertaking, which included extended observation of clinicians within a hospital, is uncommon in Pakistan. None has been done in the Institute. 14. Kleinman, “Pain and Resistance,” 172. Kleinman, a physician-anthropologist, discusses how “universal” events of life such as illness, loss, and death are reconstructed by patients and their families through their lived experiences. The importance of these “microcontexts of daily life” was brought home to me continuously during my three months in the Institute. 15. Many ethnographers have reported con®icts for the ¤eld-worker related to “rescuer impulses,” also referred to as the “therapeutic temptation,” when faced with distressing situations in the ¤eld. See, for example, Bosk, Forgive and Remember, 193–208. Also see Bowen, Return to Laughter, 181–200. The author describes her distress and her unsuccessful attempts to intervene in preventing her informant Amara’s death in childbirth. However, neither of the two authors was a physician. I believe that what deepened my moral dilemma, the distinctiveness of the therapeutic temptation I faced, was related to my unique circumstances of being an experienced physician conducting ¤eldwork in an institution with overstretched, idealistic healthcare professionals involved in the care of an overwhelming number of indigent patients and distressed families. 16. Peritoneal dialysis in Pakistan is undertaken within hospitals over two to three days following the insertion of a catheter into the abdomen. Due to the high risk of infection and the cost involved for appropriate soft catheters and dialysis solutions, CAPD (continuous ambulatory peritoneal dialysis), a routine procedure carried out at home in the United States, is seldom undertaken. Peritoneal dialysis is seen as a painful, inconvenient procedure dreaded by patients and families alike.
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17. A cardinal and recurrent teaching of the Qur’an is the obligation of all Muslims to treat orphans with compassion and gentleness, deal justly with them, and provide them support. Those who reject orphans are said to have rejected faith itself. See verses 4.36, 93.9, 99.17–18, and 107.1–3. 18. Mohanty, “Under Western Eyes,” 53–62. Also see an analysis by Usha Menon of how women in India negotiate their lives in “Does Feminism Have Universal Relevance? The Challenges Posed by Oriya Hindu Family Practices,” Daedalus 129, no. 4 (Fall 2000): 77–99. For a discussion on how culture is more complicated and ambiguous than merely a case of “patriarchal permission for powerful men to subordinate vulnerable women,” see Bonnie Honig, “My Culture Made Me Do It?” in J. Cohen, Howard, and Nussbaum, Is Multiculturalism Bad for Women? 36–40. A criticism of gender and cultural “essentialism” is also provided in Uma Narayan, “Essence of Culture and a Sense of History: A Feminist Critique of Cultural Essentialism,” in Narayan and Harding, Decentering the Center, 80–100. See also Narayan, “What Do Rights Have to Do,” 186–199.
5. Ethics and Pakistan 1. Zubeida Mustafa, “Temporizing on Transplant Law,” Dawn (Karachi), 27 July 2005. 2. For reasons behind the staff ’s conviction that utilizing unrelated paid donors constitutes unethical practice see note 5 in chapter 1 and note 20 in chapter 3. 3. This is largely based on a Muslim belief, resting on a much quoted Hadith of the Prophet, that janat (paradise) lies beneath the feet of the mother. Moreover, on the Day of Judgment, Muslims believe that they will be summoned by God through reference to the name of their mothers, rather than their fathers. 4. Although Islam acknowledges the spiritual equality of all believing members of the Muslim community in the eyes of God, nevertheless it also supports hierarchy within the social realm. For example, the verse 4:59 says, “Obey God, His Prophet, and obey those in authority over you.” For a good account of the Muslim belief in the centrality of obligations of man to God, and one man to another, see Rosen, Justice of Islam, 153–156. 5. In the 1960s in Pakistan, one of the political parties used a female candidate, Fatima Jinnah, the sister of Muhammad Ali Jinnah, the founder of the nation, to contest for the position of president against a military man who was president at the time. In an androcentric society in which some Muslims believe that it is impermissible for a woman to head a country, her candidacy was legitimized politically by emphasizing that she was Madre Millat (mother of the nation). This also played on the metaphor of a mother’s central position within Islam. Despite support by one of the most conservative Islamic political parties, the Jamate Islami, she lost. 6. Zaman, “Psychotherapy in the Third World,” 314–320; Zaman, “Adaptation of Western Psychotherapeutic Methods,” 65–87. For my personal experience as a surgeon on the faculty of a university in Pakistan con¤rming this nature of patient-family-physician relationships in Pakistan, see Moazam, “Families, Patients, and Physicians,” 28–37. 7. The “oath” that physicians and nurses take upon graduating in Pakistan,
Notes to pages 220–224
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although not identical among the many colleges, nevertheless includes in one form or another the sacredness of a duty to serve humankind. 8. For insight into the ethos of the Institute that focuses on social injustices and the institution’s role in addressing some of these, see Zubeida Mustafa, “Organ Transplantation Has Come to Stay,” Dawn (Karachi), Tuesday Review Section, 4–10 August 1992. There is a strong sense among senior staff that those in authority have a collective obligation to foster social justice in the face of existing medical, social, and cultural realities against which the powerless have little or no recourse. 9. In the lives of the indigent, illiterate, distressingly ill population the Institute served, the term individual rights seems super®uous and was seldom mentioned. The Urdu word for rights (haq) did not ¤gure in the vocabulary I heard in the clinics. Moreover, unlike in the United States, the Pakistani legal system is cumbersome, is considered corrupt by many, and is especially dif¤cult to access by the poor. Instances of ordinary individuals or families turning to the courts for justice and to redress infractions of “rights” are a rarity. 10. Pakistan has a high incidence of hypertension, diabetes, and glomerular disease resulting from undiagnosed and untreated infection. Aware of this, and concerned about donors who often come from rural areas where medical care is poor or absent, the staff established a donor clinic in 2000 to provide annual checkups, free of charge. Dietitians are also present to provide advice on appropriate nutrition. To the best of my knowledge, such a clinic for long-term follow-up of donors is a unique venture anywhere in the world. 11. Beauchamp and Childress base a concept of “the common morality” on a set of moral norms “that all morally serious persons share,” and that is binding on “all persons in all places.” See Beauchamp and Childress, Principles of Biomedical Ethics, 3. 12. Ibid. 13. Adnan A. Hyder and Sarah Nadeem, “Health Ethics in Pakistan: A Literature Review of Its Present State,” Journal of Health, Population, and Nutrition 19, no. 1 (March 2001): 6–11. For the activities related to bioethics in one of the private universities, see Jafarey, “Bioethics Group of the Aga Khan University,” 165–166. 14. In a recent interview Dr. Qasim, the vice-chancellor of Karachi University, provides an excellent analysis of the practical dif¤culties for Urdu-speaking Pakistani students and laypeople in comprehension and communicating in English. He says, “In a recent survey of the Urdu Bazaar, we found that many students who go to English-medium schools and colleges purchase books in Urdu to better comprehend the subjects they are studying in English.” He adds, “A lot of litigants who do not know a word of English fail to understand what their lawyer is saying in the courts.” (This is just as true for physicians who conduct discussions with students and residents in English in their clinics.) See Qasim’s interview in Bahzad Alam Khan, “Striking a Balance Is What We Need to Do,” Dawn Magazine (Karachi), 21 March 2004, pp. 1–2. 15. The dif¤culty in translation from one language to another is, of course, well known. Bernard Lewis writes about how, as nothing is considered “secular” in Islam, a word for this English term had to be “coined” in the Arabic language. He notes that this word, alamani (alam means the world), is nevertheless inaccu-
242
Notes to pages 224–226
rate, as the etymology of secular denotes the domain of the state versus the church in Christianity. The word coined in Urdu for secular is dunyawi (literally, “of the world”) and thus carries the same dif¤culty. See Lewis, Political Language of Islam, 3–5. 16. The particularities of the ways in which we conceive our worlds and the dif¤culties encountered in “communicating” with those from a society (and in a language) very different from ours was demonstrated in a story told to me by the medical sociologist Renee Fox (personal communication). A Jesuit priest of her acquaintance spends summers doing parish work with the Inuit in Alaska. While conducting Mass, he discovered that the Catholic metaphor “Lamb of God” was meaningless to them as they had never seen a lamb. He also found that although the Inuit had over a dozen words for snow and its shades of white, they had no exact word for trust in their language. 17. Moazam and Jafarey, “Pakistan and Biomedical Ethics,” 249–255. 18. Rumi, Essential Rumi, 252. 19. Geertz, Works and Lives, 147.
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Sharp, Lesley A. “Organ Transplantation as a Transformative Experience.” Medical Anthropology Quarterly 9, no. 3 (September 1995): 357–389. Simmons, Roberta G., Susan K. Marine, and Richard L. Simmons. Gift of Life: The Effect of Organ Transplantation on Individual, Family and Societal Dynamics. 2nd ed. New Brunswick, N.J.: Transaction, 1987. Singelis, T. M. “The Measurement of Independent and Interdependent Self Construals.” Personality and Social Psychology Bulletin no. 20 (1994): 580–591. Smith, Wilfred Cantwell. Belief and History. Charlottesville: University of Virginia Press, 1977. Spital, Aaron. “Living Kidney Donation: Still Worth the Risk.” Transplantation Proceedings 20, no. 5 (October 1988): 1051–1058. 1. “Living Organ Donation: Shifting Responsibility.” Archives of Internal Medicine 151 (February 1991): 49–51. 1. “Public Attitudes toward Kidney Donation by Friends and Altruistic Strangers in the United States.” Transplantation 71 (2001): 1061–1064. Stowasser, Barbara Freyer. Women in the Qur’an, Traditions, and Interpretation. New York: Oxford University Press, 1994. Sullivan, Lawrence E., ed. Healing and Restoring: Health and Medicine in the World’s Religious Traditions. New York: Macmillan, 1989. Taghavi, R., R. Mahdavi, and H. Toufani. “The Psychological Effects of Kidney Donation on Living Kidney Donors (Related and Unrelated).” Transplantation Proceedings 33 (2001): 2636–2637. Tauber, Alfred I. Confessions of a Medicine Man: An Essay in Popular Philosophy. Cambridge, Mass: MIT Press, 2000. 1. “Sick Autonomy.” Perspectives in Biology and Medicine 46, no. 4 (Autumn 2003): 484–495. Taylor, Charles. “Interpretation and the Sciences of Man.” In Interpretive Social Science, ed. Paul Rabinow and William M. Sullivan, 25–71. Berkeley: University of California Press, 1979. 1. Sources of the Self: The Making of Modern Identities. Cambridge, Mass.: Harvard University Press, 1989. Taylor, Rodney L., and Jean Watson, eds. They Shall Not Hurt: Human Suffering and Human Caring. Boulder: Colorado Associated University Press, 1989. Triandis, Harry C. Individualism and Collectivism. Boulder, Colo.: Westview Press, 1995. United Nations Development Programme (UNDP). Human Development Report 2000. New York: Oxford University Press, 2000. Veatch, Robert M. “Is There a Common Morality?” Kennedy Institute of Ethics Journal 13, no. 3 (September 2003): 189–192. Walther, Wiebke. Women in Islam: From Medieval to Modern Times. Rev. ed. Princeton, N.J.: Markus Weiner, 1995. Watanabe, T., and S. Hiraga. “In®uence on Family Psychodynamics on Spousal Kidney Transplantation.” Transplantation Proceedings 34 (2002): 1145–1147. Watt, W. Montgomery. Islamic Philosophy and Theology: An Extended Survey. 4th ed. Edinburgh: Edinburgh University Press, 1995. Weber, Max. The Sociology of Religion. Trans. Ephraim Fischoff. Boston: Beacon Press, 1964.
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253
World Health Organization. The World Health Report 1999: Making a Difference. Geneva: World Health Organization, 1999. Whyte, William Foote. Street Corner Society: The Social Structure of an Italian Slum. 4th ed. Chicago: University of Chicago Press, 1993. Yaseen, Mohammed Naeem. “The Rulings for the Donation of Human Organs in the Light of Shar’i Rules and Medical Facts.” In Health Policy, Ethics, and Human Values: Islamic Perspective, ed. Ahmed Raja El-Gindi, 303–340. Kuwait: Islamic Organization for Medical Science, 1995. Zaman, Riffat Moazam. “The Adaptation of Western Psychotherapeutic Methods to Muslim Societies.” World Psychology 3 (1997): 65–87. 1. “Psychotherapy in the Third World: Some Impressions from Pakistan.” In Psychology in Internal Perspective, ed. U. P. Gielen, L. L. Adler, and N. A. Milgram, 314–320. Amsterdam: Swets and Zeitlinger, 1992.
INDEX
aap vs. tum, 28, 98, 185 abba, 62 acetate dialysis, 56 adab al-tabib, 223–225 adal-badal, 193–196, 210 adhan, 156 adl, 78, 234n14 Aesculapian power of doctors, 51 age: dynamics of families, 68, 78; as excuse not to donate, 99; used as criteria for determining a donor, 147–150, 209 Ahmed, Akber, 152 Ahmed, Dr., 23, 25–26, 45–52, 63–64, 67–68, 184–185; on cadaveric organ donations, 35– 37; efforts to force family members to donate, 103–104, 105; ®oods in Sindh, 52–54; as gatekeeper, 118–120; handling of journalists asking for interview, 85–86; salary of, 231–232n31; seen as father ¤gure, 87, 88–89, 92–93, 105. See also staff of the Institute Aijaz (potential donor), 209–210, 211, 213–214 alamani, 241–242n15 Al-Bukhari, Imam Abi Abdullah Muhammad bin Ismail, 163 alhamdulillah, 4, 181 alim, 7 alim fazal, 173 Al-Jauziyah, Imam Ibn Al-Qaiyim, 237n31 Allah, 4; rights of God, 78 Allah-walley, 157 Al-Majma’ al-Fiqhi al-Islami, 33 alternative modes of therapy, 18, 155–161, 237n34; in India, 161 altruism, 125, 128–129, 135, 138, 218, 235n31 amanat, 6, 33 Amara, 239n15 American individualism, 232n4 American School, 176–179 ammi, 62 amulets. See gunda; taweez androcentric society, 16 angels. See farishtas
anger at family members unwilling to donate, 57 animal research, 48, 231n27 anthropology, 228n15, 238–239n10; native anthropologists, 172–173, 238n4, 239n12 anthropomorphization of donated organ, 169 anti-paternalism, 75 Anwar (potential donor), 203, 204 apna khoon, 138 armchair anthropology, 238–239n10 arranged marriages, 69, 79 arterio-venous ¤stulae, 13, 206 Aslam (transplant recipient), 97–98 aunt. See khala; phupi authority ¤gure seen as family member, 60, 80 autonomy, 135, 224, 233n7, 235n31; in bioethics, 2, 3, 75, 227nn1–2; and individualism, 74, 75; of patients and families, 95 AVF. See arterio-venous ¤stulae Ayesha (transplant patient), 202–205, 212 Ayub (prophet), 229n22 Ayurvedic medicine, 157 azan, 4 Aziza (kidney donor), 159–161 Azra, Ms., 27, 59–66, 95–96, 189–190, 201– 202; efforts to force family members to donate, 102–103; as gatekeeper, 109; on married women donating, 118; protecting single women, 66, 70, 102, 107–108, 110– 111, 112–114, 117; providing update on cases, 212–214; view of Dr. Ahmed, 89. See also staff of the Institute baap, 80 Babu (ward boy), 48 bacha/bachon/bachey, 232n34 Badar, Dr., 24, 40–45, 89–91, 189, 199, 232n34; as gatekeeper, 109, 116–117; role as “mother” at Institute, 92; on single women as donors, 111–112. See also staff of the Institute bahir, 106, 146–147
Index
256 bajee, 87–88 balanced, 78 Balinese culture and kinship terms, 234n15 Baloch, 4 bara/baree, 61, 64, 162, 168, 232n34 beard as mark of a religious Muslim, 105 bearded ones. See daree-wallas Beauchamp, Tom, 2, 108, 182, 222, 227n1, 241n11 beggars, patients as, 95–96 behan, 79 beliefs: interface of scienti¤c knowledge and lay “beliefs,” 155–161; magico-religious “beliefs,” 154, 237n28; shared beliefs, 155–156 Benedict, Ruth, 228n15 bene¤cence, 2, 75, 227nn1–2, 229n21, 233n7 benevolence, 229n21 BG. See Bioethics Group bhai, 79 Bhutto, Zul¤qar Ali, 89–90 big. See bara/baree Bilquis (kidney donor), 196–197 bioethics, 82, 180–181, 182–183, 232–233nn5– 7, 234n20; birth of, 75; internationalizing, 225; principles of, 2–3, 227nn1–2, 233n7 Bioethics Group, 182 biopsies, 13 bismillah, 4 blood. See khoon Board of Internal Medicine, 93 Bohannan, Laura, 238–239n10 bone marrow transplants, 30 brain death criteria, 5, 31, 32, 33–34, 230– 231n17 breadwinner, 71, 131–132, 147, 154 British colonialism, impact on Pakistan, 177–178 Brody, Howard, 51, 93 brother. See bhai Browne, Edward G., 237n31 burials, 35 buying and selling of organs, 30, 33, 37–38, 125, 130, 216, 229–230n5, 236n20 cadaveric organ donations, 5–6, 30–37, 129– 130, 216, 229n17; lack of, 8; legalization of, 229–230n5; opposition to in Pakistan, 7 call to prayer. See adhan; azan CAPD. See continuous ambulatory peritoneal dialysis care ethics, 227n2
casualty department. See emergency department casuistry, 227n2 Center for Strategic and International Studies, 238n9 chacha, 79 chador, 99 chalak, 65 Chandnee (potential donor), 147–150 charismatic power of doctors, 51 charity to the poor. See sadqa child/children. See bacha/bachon/bachey Childress, James, 2, 9, 108, 182–183, 222, 227n1, 238n9, 241n11 chotee, 61, 64 Christianity, 74, 234n20, 236n23 civil rights, 175 clinic of con®ict. See Maar-Dhaar clinic clinic of sorrows. See Ghamon kaa clinic Code of Ethics for Medical and Dental Practitioners (Pakistan Medical and Dental Council), 227n2 collective family identity, 77 collectivistic culture, 3, 76, 86, 233n8 College of Physicians and Surgeons of Pakistan, 183 communitarian ethics, 227n2 compassion, 93 complexity of ethical reality, 9 complexity of Pakistani culture, 3 con¤dentiality, 13, 60–61 consensus. See ijma continuous ambulatory peritoneal dialysis (CAPD), 231n28, 239n16 corneal transplants, 30 Council of Islamic Fiqh Academy of the Muslim World League, 32 cousins, marriage of, 79, 131 cross-cultural psychology, 104, 211 cultural necessity. See rawaj culture: collectivistic culture, 233n8; crosscultural psychology, 104, 211; cultural essentialism, 240n18; cultural inappropriateness, 11; interpreting, 9; medical culture, 155–156; “other” cultures, 228n15; Pakistan’s, 75–76 cure. See shifa custom. See rawaj dant, 64, 232n34 daree-wallas, 141
Index death, de¤ning, 5, 31, 32, 33–34, 230–231n17 deference to elders, 4 depression, clinical, 194–195 derivative reasoning, 32 detached concern, 93 diabetes, 241n10 dialysis, 13, 28–30; threat to halt in order to encourage a donor, 40, 41–42, 57, 206–207, 221. See also acetate dialysis; continuous ambulatory peritoneal dialysis; hemodialysis; peritoneal dialysis dignity of persons, 234n20 disability as excuse not to donate, 162–163, 165–166, 204 disabled. See kamzor disease vs. illness, 215 diseases as excuse not to donate, 99 diversity of Pakistani culture, 3 divorce, threat of, 210 donor clinic, 221, 241n10 dua, 157 Dumont, Louis, 74, 232n2 dunyawi, 241–242n15 dupatta, 60, 144, 174 Durkheim, Emile, 232n2 dynamism of Pakistani culture, 3 Edhi, Sattar, 50, 231n29 educational system in Pakistan, 4, 227n5 educational system of Pakistan, 223, 241n14 Edwin B. Kyle Professor of Religious Studies, 238n9 elders: deference to, 4, 68, 78; in family dynamics, 141; Ms. Azra seen as by patients and families, 60; recognition of doctor as, 80, 181, 218 emergency department, 63 Emerson, Ralph Waldo, 232n4 emotional involvement of physician, 93 empathy, 93 endowment, 46 end-stage renal disease (ESRD), 29 English (language), 222–223, 241–242nn14– 15; use of, 24 epilepsy, 237n28 equality, 74, 75, 82; spiritual equality, 240n4 ESRD. See end-stage renal disease ethics, 9, 230n13; ethical dilemmas, 20, 220– 221; ethical ethos of Institute, 11, 37–39, 86, 241n8; ethical individualism, 234n20; medical ethics, 75, 223–225, 230n13,
257 234n18; theories of, 227n2. See also unethical selling of organs ethics in Pakistani society, 222–226. See also bioethics ethnographic research, 1, 9, 171–173, 238n3, 239n13; Dr. Moazam, research of, 184–197; methodology, 10–15; reasons for ¤nishing project, 201–212; re®exive ethnography, 238–239n10; “rescuer impulses,” 239n15; socialization of researcher, 239n11 Eurotransplant Center, 31 “evil eye,” 157, 158 exchange marriages. See adal-badal excuses used for not donating. See reasons for not donating extended families, 3, 4, 76–83, 137, 216–217; dark side of, 145–153; forsaking patients rather than donating, 96; including doctor as an elder, 80, 181, 218; joint family system, 61, 77, 145–147, 217; multigenerational, 145–147, 217; in Pakistani society, 76–83; reasons for not donating, 153–154; as source of organ donation, 130; terminology for relationships, 79, 131. See also family; khandan Fadiman, Anne, 237n28 family, 233n12, 238n7. See also extended families; khandan; importance of family of origin, 174–175; indigenous values in®uencing, 185; obligations, 236n22; in Pakistani society, 169–170; responsibility to ¤nd donor, 128; support of, 55; taking advantage of non-understanding, 147–150 fard kifaya, 234n18 farishtas, 81 farz, 138, 169–170, 218 fast track for families willing to donate, 57 fatawa, 5, 31, 32, 228n11; on organ transplantation, 6–7, 32, 35 fate. See kismet; taqdir father. See abba; baap Fatima, Dr., 66–71, 99, 189, 199, 201–202; efforts to force family members to donate, 103; as gatekeeper, 109; protecting married women, 70, 95–104, 112, 115–116, 117–118, 147–150; on single women as donors, 71. See also staff of the Institute fear: forbidden intercourse, 168–169; of loss of job, 205; of loss of sexual potency, 163; of not being able to have children, 163; as
258 reason for not donating, 218; of surgery, 154; that donor will be disabled, 162–163, 165–166, 204. See also khot Fehmida (kidney donor), 193–196 female donors vs. male donors, 59, 128, 165–166 feminism, 175, 191, 211 ¤eldwork, 238–239n10 ¤qh, 31, 183, 227n6, 230n10 ®esh and blood. See apna khoon; khoon forbidden. See haram formal vs. informal mode of address, 28, 98, 185 forsaking patients rather than donating, 136 Fox, Renee, 93, 126, 161, 169, 236n23, 238n2,8, 239n11, 242n16 Frazer, James George, 237n26 free medical care, 178, 238n5; at Institute, 12, 25, 37, 45–46, 49–50 friendships, same sex, 79–80 fuqaha, 5, 7, 31, 32, 230n12 Gass, William, 121 gatekeeping, 16–17, 58, 107–120, 127 Geertz, Clifford, 9, 123, 169, 171, 226 gender blind terms, 229n2 gender breakdown of donors, 59 gender dynamics of families, 65, 70, 78, 135, 194–195, 240n18; among Pathans, 152; effecting family selection of donor, 142, 145– 147, 165–166 Ghamon kaa clinic, 107, 202, 205 ghar, 106, 146–147 ghar kee baat, 234n29 “gift of life,” 125, 126, 128–129, 138, 143, 170, 218, 236n23 gifts, 235n11. See also tuhfah glomerular disease, 241n10 Golden Bough (Frazer), 237n28 Good, Byron, 155 grounds of certainty. See yaqin group loyalties, 86 guilt, 218 Gul (kidney donor), 167–168 gunda, 157 Hadith, 4, 32, 34, 157, 163, 164, 227n5,7, 240n3; respect for the dead, 35 Hajj, 66 Hakeem/Hakim, 66, 80, 218 Haleem (transplant patient), 96–97 “half a man,” 166–169
Index hamara khoon, 206 Hanifa (kidney donor), 138–142 haq, 241n9 haquq al ibad, 78 haquq Allah, 78 haram, 168, 231n27 head scarf. See hijab healers. See Hakeem/Hakim health insurance, 216, 238n5 hemodialysis, 27, 29, 37, 57, 199–200; number of at Institute, 37–38 Henley, William Ernest, 82 Hepatitis C, 38, 100 herbal as alternative treatments, 157 hierarchical systems, 74, 83, 145, 217; family structures, 78 hijab, 66 Hikmat, 157 Hmong culture, 237n28 homeopathy, 157 human dignity, 75 hypertension, 241n10 if Allah wills it. See inshallah ijma, 32 ijtihad, 34 Ikram (kidney donor), 158–159 illiteracy in Pakistan, 29, 35, 152 illness, complexity of, 215 immunosuppressive drugs, 123 in the name of Allah. See bismillah incest, 169 independent human reasoning. See ijtihad independent vs. interdependent view of self, 104 India, 161; women in, 240n18 indigenous values, 73, 225 individual rights, 45, 74, 78, 233–234n13, 241n9 individualism, 73–75, 232nn2,4, 234n20 informed consent, 13, 25 in-group/out-group, 86, 142, 146–147, 165–166 injustice, 220 inshallah, 4, 181 inside. See ghar Institute, 1, 22–23, 26–27; barriers for delivering effective service, 220–221; ethical ethos of, 11, 37–39, 216–217, 241n8; ethnographic research at, 184–197; as a family, 81–93, 216–217, 218–219; free medical care, 12, 25, 37, 45–46, 49–50; hierarchy
Index of, 98; national reputation, 46; no donor mortality, 39; start up of, 48–49, 54–55, 63–64, 84–86. See also staff of the Institute Institutional Review Board (IRB), 13 insurance, 216, 238n5 interconnectedness, 82, 87 interdependencies, 3, 16, 82, 87 interference, 74 International Islamic Conference, 233–234n13 “interrogation rather than interviewing,” 108 interviews: in-depth, 11; informal, 12; openended, 13 Inuit, 242n16 “Invictus” (Henley), 82 Iqbal, Mohammad, 82, 234n21 IRB. See Institutional Review Board irrational opinions, 155 Islam, 3–5; history of medicine in, 237n31; no centralized “Church,” 228n11; of¤cial religion of Pakistan, 73, 227n3. See also Shi’i; Sunnis “Islamic Code of Medical Ethics,” 228n12, 234n18 Islamic Declaration, 233–234n13 Islamic Juridical Academy. See Al-Majma’ al-Fiqhi al-Islami Islamic law, 5 Islamic Organization for Medical Sciences, 32, 228n12 Islamic Republic of Pakistan. See Pakistan Islamic Revolution, 67 istihsan, 32 istislah, 32 “I-witness,” 238n3 Jamate Islami party, 240n5 janat, 78, 240n3 Japan: brain death criteria and, 230–231n17; collectivistic culture, 233n8; father-like managers, 87; medical pluralism, 237n34; organ donation in, 236n23; physicians in, 80 Jinnah, Fatima, 240n5 Jinnah, Muhammad Ali, 240n5 Job, 17, 229n22 “joint family” system, 61, 77, 145–147, 217. See also extended families journalists asking for interview, 85–86, 234n29 Judeo-Christian ethos, 236n23 juridical preference. See istihsan jurisprudence. See ¤qh
259 juristic principles, secondary, 32, 230n13 jurists. See fuqaha; mufti justice, 75, 227nn1–2, 233n7, 233n12, 234n14; Islamic concept of, 78; social justice, 241n8 kalam, 183, 227n6 kamzor, 166, 167 kanpo, 237n34 Karachi, Pakistan, 22, 28 Karachi University, 241n14 khala, 62, 69, 79, 202–203 Khalid, Dr., 52–58, 67–68, 110. See also staff of the Institute Khan (transplant recipient), 168–169 khandan, 79, 216–217. See also extended families; family khof, 162 khoon, 79, 138, 175, 206, 217, 218 khudmukhtari, 224. See also autonomy Khurshid (potential donor), 97, 98 kinship, 78, 79, 137, 233n12; obligations of, 4, 106, 138, 216, 217, 231n22, 236n22; terminology, 79, 131, 234n15 kismet, 156 Kitayama, Shinobu, 86, 87, 104, 233n8 Kleinman, Arthur, 137, 181, 239n14 kunba, 136 Lahore, Pakistan, 28 “Lamb of God,” 242n16 legal probability. See zann Lewis, Bernard, 241–242n15 liberty, 74 “linguistic disjunction,” 224 literacy rate in Pakistan, 29, 35; low female rate, 152 liver transplants, 30 living organ donations, 5–6, 30, 127, 216; increase in numbers of, 228n14 Lock, Margaret, 236n23 love. See mohabbat Ludmerer, Kenneth M., 91–92 Lukes, Steven, 74 Lynn, Joanne, 238n8 maa, 80 Maar-Dhaar clinic, 107, 190, 198 “Madam,” 229n2. See also Azra, Ms.; Moazam, Farhat madaris, 4 madhab, 31 Madre Millat, 240n5
260 magico-religious “beliefs,” 154, 155–161, 237n26 majboori, 218 male as breadwinner. See breadwinner male donors vs. female donors, 59, 65, 166, 235n32; treatment by Institute, 106–107 Malinowski, Bronislaw, 161, 237n26, 238– 239n10 Maqli tribe, 131 Marine, Susan K., 128 Markus, Hazel Rose, 86, 87, 104, 233n8 marriages: adal-badal (exchange marriages), 193–196, 210; arranged, 69, 79; between ¤rst cousins, 79; lack of proposals for single women donors, 66, 70, 109–115; legal marriage ceremony, see nikah; traditional Muslim views of, 163–164 married women forced to donate, 70, 95– 104, 115–116, 117–118, 130–131, 147–150 Marshall, Patricia, 238n8 Maryam (transplant patient’s family member), 210 mashallah, 4 Masih, Tara, 89–90, 120 maslaha, 32 maternal role in families, 62, 78, 92, 240n3 Maulvi, 4, 227n6 Mauss, Marcel, 126, 235n11 medical conditions as excuse not to donate, 154 medical culture, 155–156 medical education, 91–92 medical ethics, 75, 223–225, 230n13, 234n18 medical pluralism, 161, 237n34 medical sociology, 238n2 mera khoon, 218 mercy, 78 microcontexts of daily life, 155–156, 239n14 Middle East views on organ donations, 5, 6, 32 Minkha (transplant patient), 150–153 Moazam, Farhat, 171–214; childhood, 173– 175; making of a surgeon, 175–184; moral dilemmas for, 18–20, 191–212; as participant observer, 184–212; reasons for ending research project, 201–212 mohabbat, 138, 143, 218; as reason for donating, 138–142 Mohammad (Prophet), 163–164 Mohanty, Chandra Talpade, 211 money for poor. See sadqa Moosa, Ebrahim, 33–34
Index moral dilemma of participant observer, 18– 20, 191–212, 239n15 morality, 234n19; common morality, 241n11; relational, 45, 82 morbidity, no donor mortality at Institute, 127 mother. See ammi; maa “mother of the nation,” 240n5 mother-child relationships, 78 mufti, 5, 31 mullahs, 7, 35 multigenerational families, 145–147, 217. See also extended families Murray, Joseph, 123 Muslim, Imam, 163 “Muslim Ethics,” 5 Muslim jurisprudence, 230n10 my blood. See mera khoon my ®esh and blood. See apna khoon National Dialysis and Transplant Program (NDTP), 41–42, 45 national health insurance, 216, 238n5 native anthropologists, 172–173, 238n4, 239n12 NDTP. See National Dialysis and Transplant Program necessity. See majboori Neonatal Intensive Care Unit, 181 nephrectomy, 13, 24. See also renal transplants nikah, 112 Noman (transplant recipient), 158–159 non-male¤cence, 2, 75, 227nn1–2, 233n7 North-West Frontier Province (NWFP), 150–153 nurses and nursing, interviews with, 83–89 NWFP. See North-West Frontier Province oath of physicians in Pakistan, 240–241n7 obligations, 3, 233–234nn13,19; to God, 240n4; importance of in Islam, 227– 228n7; to kin, 4, 106, 138, 216, 217, 231n22, 236n22; Maussian paradigm of gift exchange, 126, 235n11; personalized obligation to patients, 94; sawab (reward from God), 142–144. See also farz “Of the Bond between Individual and Community” (Iqbal), 82 older sister. See bajee omnipotence of God, 4 OPD. See outpatient department organ donors, 169, 230n15; convincing to do-
Index nate, 38–39; efforts of Institute to ¤nd, 95– 104; no donor, 41–42; no mortality at Institute, 39; no willing donor, 41–42; paid donors, 30, 33, 37–38, 125, 130, 216, 229– 230n5, 236n20; Pakistani reasons for donating, 138; potential risks for, 137; praise for, 95; relationship to patient, 30, 130; selecting of, 58; sources of, 37, 231n19; Western reasons for donating, 125–129, 138. See also reasons for donating; reasons for not donating; refusing dialysis when family will not donate; reluctance to donate a kidney Organization of Islamic Conference, 32 organs as property, 125 orphans, 203, 204, 240n17 “other” cultures, 228n15 our ®esh and blood. See hamara khoon outpatient department, 26, 67 outside. See bahir Pakhtunwali (Code of the Pathans), 152 Pakistan, 28–30, 73; bioethics in, 3; culture in, 75–76; dialysis and renal transplants in, 29–30; educational system of, 4, 223, 227n5, 241n14; extended family system in, 76–83; illiteracy in, 29, 35, 152; Islamic nature of, 4; laws on cadaveric organ donations, 229n17, 229–230n5; legal system of, 241n9; National Dialysis and Transplant Program, 41–42, 45; organ transplantation bill, 216; patient-physician interactions, 180; per capita income in, 29, 179; perceptions of physicians in, 80–81; poverty in, 43–44, 178, 216; reputation of, 49 Pakistan Medical and Dental Council (PMDC), 30, 183, 227n2 Pakistan Medical Association, 52–54, 198 paradise. See janat participant observer, 1; Dr. Moazam as, 184– 197; moral dilemma of, 18–20, 191–212, 239n15; reasons for ¤nishing project, 201–212 Pathan, 4, 150–153, 164–165, 167–168 pathophysiology, 215 patient advocacy, 175, 219 patient-physician interactions, 180–181, 219– 220, 238n2, 238n7, 240n6 patients: understanding of illness, 155–156; as victims, 16, 93–107, 108, 120–121, 219 patriarchal society, 16, 78, 92, 145, 211, 240n18
261 payment to donors, 30, 33, 37–38, 125, 130, 216, 229–230n5, 236n20 peer group, 98 per capita income in Pakistan, 29, 179 peritoneal dialysis, 56, 199, 231n28, 239n16 personal identity, 77 PGME. See postgraduate medical education phupi, 79 physician-patient relationships, 238n2, 238n7, 240n6 physicians: duties and traits of, 237n31; emotional involvement of, 93; medical ethics, 75, 223–225, 230n13, 234n18; moral dilemmas as a participant observer, 18–20, 191– 212; perceptions of in Pakistan, 80–81; physician-patient relationships, 180–181, 219–220; power of, 51; recognition of as an elder, 80, 181, 218; violence against, 198, 200–201. See also Hakeem/Hakim pigs as research animals, 231n27 pilgrimage to Mecca. See Hajj PMDC. See Pakistan Medical and Dental Council poet. See sha’er “police case,” 108 postgraduate medical education (PGME), 182–183 post-transplant clinic, 27 poverty in Pakistan, 43–44, 178, 216 praise be to Allah. See mashallah prayers. See dua pre-transplant clinic, 26, 39, 187–191 pre-transplant meetings, 23–24 Principles of Biomedical Ethics (Beauchamp and Childress), 2, 227n1 principlism, 227n2, 233n7 privacy, 60–61, 74, 75, 86; lack of at pretransplant clinic, 189 private practice, 54, 231–232n31 problem. See maslaha Prophet, 4, 34–35, 227–228n7, 234n19, 236n22, 240n3. See also Hadith; Sunna Prophetic Medicine, 157 “Protestant” New World, 74 public welfare. See istislah Pukhtun, 152 Punjabi, 4, 29 qameez, 60 Qasim, Dr., 241n14 qiyas, 32 quist, 234n14
Index
262 Qur’an, 34, 229n22, 237n31; de¤ning death, 33; and justice, 78, 234n14; respect for family, 62, 77–78, 227n7, 231n22, 233n12, 236n22; teaching of, 4, 31, 227n5–6; treatment of orphans, 240n17; used as alternative or additional treatment, 156, 157, 160 qurbani, 138, 218
roots. See usul Rosen, Lawrence, 78 Royal College of Surgeons, 47 ruh, 33–34 ruhani ilaj, 157, 159 Ruhavi, Al-, 80 Rumi, Jeladdin, 225–226
rawaj, 63, 71 reasoning by analogy. See qiyas reasons for donating: apna khoon (my ®esh and blood), 138; complexity of, 144–145; farz, 138, 218; mera khoon, 218; mohabbat, 138–142, 218; qurbani, 138; religious obligation, 142–144; sawab, 138; in Western culture, 125–129, 138, 143, 218, 236n23 reasons for not donating, 203, 218; disability, fear of, 204; forbidden intercourse, 168– 169; loss of sexual potency, 163; not being able to have children, 163; surgery, 154; that donor will be disabled, 162–163, 165– 166, 204 reciprocation, 126, 235n11 re®exive ethnography, 238–239n10 Reformation, 74 refusing dialysis when family will not donate, 40, 41–42, 57, 206–207, 221 Rehabilitation Unit, 39 relational morality, 45, 82, 94 relationships, 16, 79; importance of in Pakistan culture, 78 religious modes of treatment, 157 religious scholar. See alim reluctance to donate a kidney, 26, 112; efforts of Institute to convince to donate, 40, 41– 42, 44, 50, 57, 95–104, 206–207; examples of, 96–98; excuses used, 98–100, 106, 218; married women coerced into donating, 70, 95–104, 115–116, 117–118, 130–131, 147– 150; reasons for, 153–154; staff anger at, 12, 57, 95 Renaissance, 74 renal transplants, 25; ¤rst at the Institute, 37. See also nephrectomy responsibilities, 16; to kin, 45 reward from God. See sawab rhm, 78 Riasat (potential donor), 206–212, 213–214 rights. See haq rights of God. See haquq Allah rights of humans. See haquq al ibad rights of individuals, 3
Sachedina, Abdulaziz, 238n9 sacri¤ce. See qurbani sadqa, 156, 157 sahib, use of term, 24, 229n1 Saima (transplant recipient), 95–96, 159–161 Sajeda (transplant recipient), 193–196 Sakeena (potential donor), 96–97 Salma (transplant patient), 100–101, 106, 206–212, 213–214 samosas, 12, 98 “saving face,” 106 sawab, 7, 138, 142–144, 218 scarf. See dupatta scarf, large. See chador scholars. See ulema schools. See madhab scold. See dant secondary juristic principles, 32, 230n13 secular. See dunyawi secular individualism, 234n20 self, 73, 172, 233n8 self-development, 75 self-esteem, 125, 128, 135 self-governance, 74 self-sacri¤ce, 125 sexual potency after nephrectomy, 163, 166– 167, 168 sha’er, 67 Sha¤, Maulan Mufti Mohammed, 5–6, 33 shalwar, 60 Shama (nurse), 84, 85, 88 shame, 104–105, 106, 153, 218 Shameem (kidney donor), 165–166 shared beliefs, 155–156 Shari’a, 5, 6, 32, 131, 230n12 Shasustra (ancient Hindu surgeon), 48 Shehzad (kidney donor), 142–144 shifa, 156 Shi’i, 28, 230n10 siblings as source of organ donation, 37, 231n19 Simmons, Richard L., 128 Simmons, Roberta, 127–128 Sindhi, 4; ®oods in, 52–54
Index single women as donors, 194; failing to get marriage proposals, 66, 70, 102, 109–115, 147, 164–165; Hanifa, 138–142; voluntariness of donations, judging, 118–120 “Sir,” 229n2. See also Ahmed, Dr. sister. See bajee; behan snow, words for in Inuit, 242n16 social interconnectedness, 78 social justice, 241n8 social power of doctors, 51 socialization of researcher, 239n11 socioeconomic conditions of patients, 55 Soomro (transplant recipient), 166–167 soul. See ruh South Asian views on organ donations, 5–6, 33, 230n15 spiritual equality, 240n4 spiritual therapy. See ruhani ilaj Spital, Aaron, 235n31 spouses: love of, 138; as source of organ donation, 37, 231n19 staff of the Institute, 11; blurring personal and professional interactions, 71–72, 88; efforts to ¤nd organ donors, 95–104, 107– 120; key female players, 58–71; key male players, 39–58; seen as family, 81–93, 216– 217, 218–219. See also individual names; Institute Sunna, 31, 32, 77–78, 231n22, 233n12; de¤ning death, 33 Sunnis, 4, 28, 64, 230n10 supreme scholar. See alim fazal surgery, fear of, 154 Swazey, Judith, 126, 169 taqdir, 156 Tauber, Alfred, 93–94 taweez, 157, 158 Taylor, Charles, 73 tea-drinking ritual, 12, 24–25, 98; tea-boy, 28 “team effort,” 83 thanks be to Allah. See alhamdulillah theology. See kalam therapeutic distance, 93 therapeutic temptation, 239n15 third-party payers, 238n5 threats: of divorce, 210; refusing dialysis when family will not donate, 40, 41–42, 57, 206–207, 221 tibbi-akhlaq, 223–225 traditional culture, 76 translation of languages, 241–242n15
263 transplantation, 13; psycho-social effects of, 125 treatments, alternative forms, 155–161 tribe. See kunba trust, word for in Inuit, 242n16 trusteeship. See amanat Tufail (transplant patient), 130–137 tuhfah, 143 tum vs. aap, 28, 98, 185 ulema, 5, 7, 31, 225, 227n6, 228n11; in®uence of, 34; views on kidney donations, 6, 32, 230n15 Unani form of medicine, 67, 157 uncle. See bhai; chacha unethical selling of organs, 30, 33, 37–38, 125, 130, 216, 229–230n5, 236n20 United Network of Organ Sharing (UNOS), 59 United States: bioethics in, 2, 225, 232– 233nn5–7; Civil War and individualism, 74; medical education in, 91–92; organ transplantation in, 9, 17, 123–129; patientphysician interactions, 180 universal events, 239n14 universality of medical science, 49 University of Florida, 175 University of Virginia, 2, 183, 238n9 UNOS. See United Network of Organ Sharing unrelated donors, 30 Urdu (language), 13–14, 18, 222–223, 241– 242nn14–15; formal vs. informal mode of address, 28, 98, 185; relationship to Arabic, 229n20; use of by staff, 24 usul, 32 victims: created by extended families, 145– 153; patients as, 16, 93–107, 108, 120–121, 219; women as, 16–17, 64–65, 108, 202, 219, 235n32, 240n18 violence against physicians, 198, 200–201 virility, male, 167 voluntariness of donations, judging, 118–120 “ward boys,” 48, 83, 188 wealth tax. See zakat wives, forced to donate. See married women forced to donate women, 211; interactions with men, 68; in medical colleges, 83; protecting married women, 70, 95–104, 112, 115–116, 117–
Index
264 118, 130–131, 147–150; protecting single women, 66, 109–115, 118–120; ratio of male and female donors, 59; segregation of by Pathans, 152; treatment of, 173–174; as victims, 16–17, 64–65, 108, 202, 219, 235n32, 240n18 xenotransplantation, 6
yaqin, 34 Zahoor (transplant patient), 147–150 zakat, 39, 64, 231n21 Zakia (transplant patient), 144–145 Zaman, Riffat M., 80, 92 zann, 34 Zarina (potential donor), 130–137
Dr. Farhat Moazam is a pediatric surgeon, trained in both the United States and Pakistan. She was professor and founding chair of the Department of Surgery and an associate dean of postgraduate medical education at the Aga Khan University Medical College in Karachi. She received her Ph.D. in religious studies and bioethics at the University of Virginia and is currently professor and chair of the Center of Biomedical Ethics and Culture, Sindh Institute of Urology and Transplantation in Karachi. She is also visiting professor, Center for Humanism in Medicine, and a fellow of the Institute of Practical Ethics at the University of Virginia.
