six lives in jerusalem: end-of-life decisions in jerusalem â€” cultural, medical, ethical and...

SIX LIVES IN JERUSALEM

INTERNATIONAL LIBRARY OF ETHICS, LAW,AND THE NEW MEDICINE

Founding Editors

DAVID C. THOMASMA†DAVID N. WEISSTUB, Université de Montréal, Canada

THOMASINE KIMBROUGH KUSHNER, University of California, Berkeley, U.S.A.

Editor

DAVID N. WEISSTUB, Université de Montréal, Canada

Editorial Board

SOLLY BENATAR, University of Cape Town, South AfricaTERRY CARNEY, University of Sydney, Australia

UFFE JUUL JENSEN, Universitet Aarhus, DenmarkGERRIT K. KIMSMA, Vrije Universiteit, Amsterdam, The Netherlands

EVERT VAN LEEUWEN, Vrije Universiteit, Amsterdam, The NetherlandsSHEILA MCLEAN, Glasgow University Law School, Glasgow, United Kingdom

DAVID NOVAK, University of Toronto, CanadaEDMUND D. PELLEGRINO, Georgetown University, Washington D.C., U.S.A.DOM RENZO PEGORARO, Fondazione Lanza and University of Padua, Italy

ROBYN SHAPIRO, Medical College of Wisconsin, Milwaukee, U.S.A.LAWRENCE TANCREDI, New York University, New York, U.S.A.

VOLUME 16

The titles published in this series are listed at the end of this volume.

SIX LIVES IN JERUSALEMEnd-of-Life Decisions in Jerusalem – Cultural,

Medical, Ethical and Legal Considerations

by

Randy Linda SturmanDepartment of Anthropology,

University of California, San Diego,La Jolla, California, U.S.A.

SPRINGER SCIENCE+BUSINESS MEDIA, B.V. -

A C.I.P. Catalogue record for this book is available from the Library of Congress.

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All Rights Reserved© 2003

No part of this work may be reproduced, stored in a retrieval system, or transmittedin any form or by any means, electronic, mechanical, photocopying, microfilming, recording

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ISBN 978-94-010-3777-8 ISBN 978-94-007-1052-8 (eBook)

DOI 10.1007/978-94-007-1052-8

Originally published by Kluwer Academic Publishers in 2003 Softcover reprint of the hardcover 1st edition 2003

Springer Science+Business Media Dordrecht

This book is dedicated to my husband

Richard Elliott Friedman

My love; My best friend; My bashert

TABLE OF CONTENTS

I. A Matter of Life and Death 1

I. The Case of Sarah: How does one define the term “heroic measures”? 8

III. The Case of Reuel: An ultra-Orthodox family relies on their religious convictions in dealing with a dying father 18

IV. The Case of Aharon: At what point is a life worth saving? 35

V. The Case of Moshe: Where does one draw the line between hope and Reality? 48

VI. The Case of Fanny: Can a mind function without a body? 61

VII. The Case of Ronit: A judge is brought in to rule on a life and death matter 75

VIII. The Influence of the Holocaust 91

IX. Conclusion 100

Afterword: A Seventh Case in Jerusalem The Case of Abdul: A Palestinian boy is treated

by an Israeli physician 129

Bibliography 139

vi

CHAPTER ONE

A MATTER OF LIFE AND DEATH

A woman brings her elderly father to the hospital. He has refused to eat for several days and is dehydrated. The doctors feed and rehydrate him intravenously, but as soon as he regains consciousness he pulls out the tubes and again refuses to eat. The man suffers from dementia. His daughter does not know what to do. Should she have him tied to the bed and force-fed, or should she watch him starve to death? His doctor sits her down and tells her that he will make the medical decisions for her father. I watch her relax at the thought of not having to make the decision. A boy of seventeen lies in a coma in a hospital bed, his devoted brothers keeping a constant vigil at his side. The primary physician has written a “do-not-resuscitate” order in his chart due to the futility of trying to revive him in the event that he should go into cardiac arrest. However, a young medical resident has grown fond of the boy and has decided to ignore the order if the boy experiences heart failure. An ultra-Orthodox Jewish woman with seventeen children, the youngest of whom is two-years-old, is brought to the hospital after suffering a stroke. Within two days, she is brain dead. The hospital summons the brain death committee to confirm her medical condition and disconnect her from the respirator. Her family, however, insist that she be kept alive until her heart stops. The neurologist wants to disconnect her, but the woman’s internist insists on respecting her family’s wishes. A middle-aged man is suffering from the end stages of Alzheimer’s disease. He lies comatose in a hospital bed, fed by means of a feeding tube, unable to communicate or recognize his loved ones. He has been in this condition for eight years. His wife of many years feels that his life is no longer worth living and that he should be allowed to die. The hospital disagrees. They continue to provide him with optimal treatment, including vitamin supplements to keep him healthy and antibiotics when he gets sick. These are all real cases. Soon nearly all families will face situations like these. They are extraordinary because so many factors come into play—law, medicine, religion, culture, ethics—and the stakes are life and death. The cases are revealing, sometimes frustrating, sometimes inspiring. And the more we know of such cases, the wiser we will be when we make these decisions. These cases exemplify the types of issues that arise when families are forced to make decisions about whether to terminate medical treatment for a critically ill relative. What criteria should be used to decide whether or not to stop treatment? Who should make the decision? What factors should be considered? Where should one draw the line between continuing to hope and facing reality? Where does one draw the line between allowing a patient to die and assisting in the death? Under which of those two categories does one put the removal of a respirator? What

R L Sturman, Six Lives in Jerusalem

© Kluwer Academic Publishers 2003

CHAPTER 12

factors should one consider when deciding whether to stop medical treatment, or is it morally wrong ever to consider terminating treatment? These are the types of issues that arise when end-of-life decisions are made. All of these cases occurred in Jerusalem. Why Jerusalem? Sacred to Judaism, Christianity, and Islam, and subject to waves of immigration for millennia, Jerusalem is a singulary valuable model. The variety of cultural and religious factors that affect life decisions in that city has few parallels in the world. Working in Jerusalem is an anthropologist’s dream: one can walk down the street and see an ultra-Orthodox Jew dressed in clothing styles from Eastern Europe a hundred years ago, a modern Russian, an Ethiopian Jew, an Israeli soldier dressed in army fatigues, a woman in a mini-skirt, and an Arab dressed in traditional garb, all within the space of a few blocks. Religion is felt as an enveloping presence in the city, and the intensity of passions and beliefs from so many different sources can be found nowhere else in the world within such a small area. The walls and buildings speak of its long and complicated history that has played an important role in shaping the city. Remnants of ancient Israel can be seen alongside medievel mosques and evidence of the Turkish and British presence. Sometimes these influences remain separate; often they overlap in a way that makes Jerusalem unique among cities of the world. Geographically, it is the spot where three continents--Europe, Africa and Asia--meet. The focus of my research was to see what influences most affect how these life-and-death decisions are made in Jerusalem. This research involved certain key questions:

1. What are the cultural beliefs and values that most affect how end-of-life decisions are made, and how did these values come to be internalized? There are several shared beliefs or understandings that greatly affect how medical decisions are made in Israel. There is what I refer to throughout my work as a lack of routinization, meaning that Israelis seem to be reluctant to establish regular rules and routines. This can be seen not only in the medical setting but in other areas of Israeli life as well. The question is why Israelis are so reluctant to establish rules and why they in fact seem to believe that it is better not to have rules. As I will discuss, this cultural understanding is the result of the uncertainty of life in Israel, perceptions of historical events and deep conflicts within Israeli society. There is a cultural belief that one should never give up hope, no matter how hopeless a situation may appear to be. The result is that in many cases, patients continue to receive aggressive treatment long after there is any hope of recovery. This is further complicated by another cultural understanding that it is acceptable for doctors to become emotionally attached to patients and to allow their feelings to affect their medical decisions. Thus, although a physician may realize that a patient’s condition is hopeless, he or she may still be reluctant to give up on the patient and will continue to treat him or her long after it is medically reasonable to do so. Furthermore, there is a shared understanding that the cost of medical care should not be considered as a factor in making end-of-life decisions. Israelis hold a variety of cultural beliefs about how one should judge the quality of life and when it is appropriate to allow a patient to die. Should one consider

INTRODUCTION 3

whether the patient is suffering? Should the ability to think and reason be considered as the most important factor? For instance, should a patient with Amyotrophic lateral sclerosis (ALS) who is mentally alert yet unable to move from the neck down be allowed to refuse medical treatment; and, if so, at what point in her treatment should one consider her life no longer worth living? Is there a difference between not inserting a respirator into a patient who is unable to breathe and not inserting a feeding tube into a patient who is unable to eat? In other words, where does one draw the line between a life worth living and one that is beyond hope, and what criteria should be used? Several of my cases address this issue. 2. What are the religious influences that affect the decision-making process? Israelis all seem to agree that they are a “Jewish state” and that their Jewishness is extremely important to their collective identity; however, they have a difficult time defining what this means. There is a great deal of ambivalence, especially among the less religious, as to what role religion should be allowed to play in their lives. Many resent the control that the religious have over their lives; yet, they also feel that it is beneficial and should play some role in affecting the morals of the country. This becomes even more complicated when these religious influences start affecting such personal decisions as when a patient should be allowed to die. Religious beliefs about the sacredness of life, the role of suffering and whether any human has the right to judge the quality of another’s life result in a reluctance to contradict what is perceived to be moral or correct values. Yet, these religious rules can be quite rigid and difficult to follow, resulting in even the more religious searching for ways to avoid them. 3. What social influences affect the making of end-of-life decisions? Social concerns such as not wanting to appear to others as uncaring seem to affect the decisions that people make. This may affect individuals in different ways. In one case, a woman disagreed with a physician who continued to aggressively treat her dying mother; yet she was reluctant to speak up and appear to others as an uncaring daughter. In another case, a woman simply failed to consult with a rabbi so that she would not have to abide by a decision with which she disagreed and appear to others in her religious community as someone who was willing to violate religious mores. Everyone involved in the decision-making process, from the doctors to the nurses and other medical personnel to the immediate family to friends and acquaintances to rabbis and religious leaders, plays some role in influencing the outcome to the decision. This influence varies depending upon the people involved, the circumstances of the particular case, and the issues that arise. 4. What happens when there are overlapping, and even contradictory, spheres of influence? Especially in a country where rules are not valued and the lines of authority are not made clear, who gets to make which decisions? End-of-life decisions, by definition, encompass the overlapping spheres of medicine, law, religion, ethics and social values. As will be seen in one case that was decided by a judge, it is not always clear between the institutions of law and medicine and the family unit who should make these decisions. This is further complicated by a lack of definitive rules as to who has jurisdiction. As we shall see, even within the legal institution itself, there is a lack of clarity as to which rules or laws should be applied. There are often overlapping religious and secular rules on the subject. There are gaps, and even contradictions, in the secular

CHAPTER 14

laws. There is much debate and strong difference of opinion as to who has a legal right to make these decisions and what laws should be applied. For the most part, these issues remain unresolved. The question of who should make these decisions among the doctor (and sometimes the nurses), the family and others is also not easily answered. The hospital rules and policies are not always clear. A variety of factors affect who gets to make the final decision and whether it is decided by the individual who voices the strongest opinion, by the one who provides the least information to others, or the one who has the strongest emotional attachment to the patient. In fact, oftentimes, it is not clear which physician should make the decision or whether one doctor is obligated to follow the orders set down by a prior physician. The issue of whether death should be defined in terms of the cessation of the brain or heart is a prime example of the problems inherent in these overlapping spheres of jurisdiction. What happens when the secular rules come into conflict with the religious rules? Who has the right to decide between a doctor who has ruled that a patient is dead according to medical science and a religious family who still consider a patient alive according to their religious precepts? When should the law be brought in to make these difficult decisions; and, when it is utilized, what criteria, or which set of laws, should be applied? Should a different standard be used depending upon how religious the family is, or should the same rules be applied to everyone? These are the types of issues that I shall address. 5. What role does the influence of history, or people’s perceptions of history, play in making end-of-life decisions? The events of the Holocaust, this major traumatic event in recent history that so directly affected the lives of so many Israelis, seem to have had a great impact on Israelis’ beliefs and values with respect to making end-of-life decisions. They affect how individuals view the role of medicine, what obligations one Jew has toward another, and how this should affect the decision-making process. It affects the shared understanding that one should never give up hope and that one human has no right to judge the quality of life of another human. I have thus found it necessary to devote an entire chapter to this subject. There are other historical events that have also influenced the issues involved herein. For instance, Israelis’ perceptions of how they won their war of independence by not obeying the British rules has had an affect on their beliefs about the value, or lack thereof, of establishing regular rules and routines. Furthermore, Israelis’ perceptions of their place in history, what has allowed them to remain a cohesive people, and what the meaning of the original Zionist ideals were, has also influenced their beliefs and values. I chose to work in Israel for several reasons. First, my project involved issues that would only arise in a technologically advanced society. In countries with less access to advanced medical care, issues would not arise as to whether or not to continue life-prolonging medical treatment such as continuing a patient on a respirator or performing extensive surgery on a very ill patient. Yet I wanted a country that was different enough from the United States that it would provide a different perspective on how these issues were resolved. Second, Israel is complicated by the fact that it is a Westernized democracy, yet it has a strong religious influence. For instance, there is much debate in Israel about

INTRODUCTION 5

the conflict between the Western notion of patient autonomy, including the right of the individual to control his or her own body, and the Orthodox Jewish view that life is sacred and that nobody has a right to choose to die. Since I was interested in examining the confluence of overlapping spheres of influence, Israel served as the ideal locus for my research. Lastly, the Jewish population of Israel is made up of individuals from extremely diverse backgrounds, coming from different countries with degrees of religiosity. Yet they share a common unifying element of being Jewish and maintaining a strong collective identification with their Jewishness. This allowed me to study these different influences and how they either formed a cohesive value system or dealt with their diversity. I conducted my research in Jerusalem from July, 1997, through July, 1998. I worked primarily in three hospital units: the Internal medicine/intensive care department of Hadassah Hospital, a large teaching hospital; the geriatrics department of Shaare Tzedek medical center, a religious hospital located in Jerusalem; and the long term care unit of Ezrat Nashim hospital, a geriatric hospital. I also interviewed families at several nursing homes. Some of my informants were referred to me through friends, and I interviewed them in the community setting. I used a convenient sample: I did not attempt to balance my sample by obtaining a racial, religious, or ethnic diversity. Rather, I interviewed those individuals who were available, agreed to be interviewed, and either happened to be present at the time and place I was conducting interviews or were referred to me by friends or family who knew of my project. Oftentimes, I was referred to a particular family by one of the physicians or nurses in the hospital who knew about my research. Occasionally, a family chose not to be interviewed. I tried to speak to as many individuals in each case as possible. Sometimes I was able to interview all of the participants. Other times certain family members were unavailable or chose not to be interviewed. My principal method of investigation was an intensive case study approach. My aim was to conduct long term, in-depth studies of a small number of cases and to speak with as many individuals as possible, over an extended period of time, who were involved in the decision making-process in each case. Upon completion of my research, I had interviewed subjects in sixteen cases. In addition to these cases, I interviewed doctors, lawyers, judges (one Supreme Court justice), rabbis, hospital administrators, nurses, hospice workers, social workers and anyone else who was involved in the decision-making process. I have organized this book around six of these case studies. I chose these particular cases not only because I was able to obtain the most complete information on them but also because they provide a sampling of the types of issues that arose in the course of my research. I chose cases that represent the diversity of situations that I observed and that allow me to address the most salient issues that arose. The cases are as follows:

The case of Sarah: An elderly woman was brought to the hospital suffering from end-stage pulmonary disease. Her daughter knew that the woman was about to die and requested that she not receive any “heroic treatment.” The first doctor acceded to her wishes. A second doctor then took over the case and decided that heroic treatment did not include the insertion of a feeding tube. Although the

CHAPTER 16

daughter did not agree, a feeding tube was inserted into the woman hours before she passed away.

The case of Reuel: A ninety-year-old ultra-Orthodox Jewish man was brought to the hospital suffering from a variety of illnesses. He soon became comatose and in need of a respirator. Although he had suffered from extensive brain damage and may even have been brain dead, he was kept on the respirator for several months, with no thought of removing him from it until his heart stopped. His family was aware that he had virtually no chance of recovery, yet they did not consider allowing him to be removed from the respirator. The case of Aharon: A young man was admitted to the hospital after suffering from a heart seizure. The hospital staff knew that he had virtually no chance of recovery, had suffered brain damage, and could not be saved. Yet, they continued to treat him aggressively. Although some of the doctors objected to his continued treatment, other doctors insisted that he be treated and prevailed over these reluctant doctors. Even after a do-not-resuscitate order was agreed to, the doctor on call the night he died ignored the order and tried to revive him. The case of Moshe: An older man suffered a seizure during surgery and went into a deep coma. Although all of the doctors agreed that he had no chance of recovery, they continued to treat him. His family maintained a constant vigil at his bedside. Miraculously, he awoke from his coma and regained almost all of his normal functions. The case of Fanny: This woman was diagnosed with Amyotrophic lateral sclerosis (ALS), a disease that results in the gradual loss of all muscle function of the body. A patient with this disease continues to deteriorate until the lungs and heart stop working and the patient dies. This disease does not affect the brain, and the patient remains mentally competent until he or she dies. After Frances was diagnosed with ALS, her two grown daughters refused to tell her her prognosis and made all medical decisions for her. Finally, when they realized that they could not decide whether to put her on a respirator when the time came that she would need one, they told her the truth about her illness. This case raises questions about what criteria one should use to judge the quality of a life, what constitutes suffering, and whether an individual who is paralyzed from the neck down and fed through a feeding tube can still be judged to have some quality to her life.

The case of Ronit: This case involved a young woman with Lupus who became pregnant. Due to her underlying medical condition, when she was seven months pregnant she became quite ill, went into a coma and came close to losing her life. There was a disagreement between the family and the head of obstetrics as to whether the fetus should be saved in the event that Rina died. The doctor brought in a judge to decide the case. This judge was quite religious, and although the family was not religious he applied religious doctrines in making his ruling. This case also raises issues about the uncertainties in the Israeli legal system concerning how religious and secular laws are reconciled.

In the course of my interviews, many individuals were quite forthright in providing me with details of their cases and in discussing their feelings with me. Much of the information I gathered is of a confidential and personal nature. I have

INTRODUCTION 7

therefore chosen to use pseudonyms in order to protect the privacy of the individuals who were gracious enough to allow me to interview them. The one exception to my use of pseudonyms is in the case of Moshe. In that case, much of my data was taken from a book that was written by Moshe’s widow, my main informant, Esther. Esther has informed me that she would prefer that I use her real name. In addition, the names of famous individuals in the fields of law, medicine and religion who were interviewed in their official capacities and did not provide me with confidential information, such as the Honorable Menacham Elon, retired justice of the Israel Supreme Court, who wrote the leading opinion on the right to refuse medical treatment, retain their real names. Dealing with death is never easy. It is even more difficult when one is making such a decision for a loved one. The questions I pose are how Israelis cope with it, what issues arise, and what it can teach us about the human condition. I now present the cases:

CHAPTER TWO

THE CASE OF SARAHHow Does One Define the Term “Heroic Measures”?

Sarah was brought to the university hospital in Jerusalem suffering from various ailments related to her advanced age and generally weakened condition. She died several days later, unaware of the conflicts that surrounded her death. She was unaware of the decisions that had to be made, the conflicts over the nature of suffering and the importance of the quality of her life that would be involved in the decisions over how to care for her in her last days and hours. Instead, she quietly passed away, unable to convey to those making the decisions her final wishes and desires. That task was left to her eldest daughter, who would continue to ponder these questions long after her mother had passed away. Sarah was born in Poland and moved to Mexico in 1933. After war broke out in Europe, Sarah tried to get visas to help her family escape from Poland, but she was able to obtain only one visa, which was given to her sister. The remainder of her family—mother, father, siblings, grandparents, etc—all perished in the Holocaust, leaving her and her sister as the only survivors. Hannah, her daughter, was born in 1935, followed by another daughter six years later. Hannah was aware from an early age that she did not have any grandparents and eventually came to understand the fate of her relatives. Some time after Hannah married and had children, she and her husband decided to move to Israel. She was more religious than her mother and wanted to raise her family in a Jewish environment. She felt that she belonged in Israel. A few years ago, Hannah brought her mother to Jerusalem so that Hannah could help take care of her. Her mother’s health had been failing in the last few years and she needed to be cared for. Although her younger sister still lived in Mexico near her mother, Hannah felt that she was the stronger, more capable sibling and that it was her responsibility to care for their mother. Sarah was living in a nursing home for some time, but her health continued to deteriorate. In September, 1997, her mother became sick and was brought to Hadassah Hospital, a teaching hospital in Jerusalem. She was released a few weeks later, but the doctor informed Hannah that her mother’s condition would probably deteriorate over the next few months. On January 1, 1998, Hannah’s mother was brought back to Hadassah after she developed problems with breathing. The doctors kept her for ten days and sent her home with an oxygen mask. They told her that her lungs were not functioning and that there was nothing more they could do for her. At the time of her discharge, she had to wear an oxygen mask 24 hours a day. About two weeks later, she was brought back to the hospital. She appeared to be extremely ill, and the doctors did not think that she would live much longer. Hannah told the doctor that her mother had instructed her that she did not want any heroic measures used to save her life, and therefore Hannah did not want him to



THE CASE OF SARAH 9

try to insert the feeding tube. The doctors agreed to put a do-not-rescusitate order on the patient, which included their not placing her on a respirator, but it was unclear whether a feeding tube was included in this order. Hannah told me that she does not believe in euthanasia, but if a person is suffering greatly and is unable to function and has no quality of life, there is no point in prolonging life. She felt that her mother had been an active person her whole life and that her quality of life had become quite poor near the end. She was unable to walk even two steps, was incontinent and in constant pain, and could not go out much. By the end, she was unable to breath without oxygen and could not even swallow water. She was also unable to play with her grandchildren, from which she derived much pleasure. Hannah and her sister both felt that if her mother were fully conscious during her last hospitalization, she would have killed herself. The doctors agreed to give Hannah’s mother medication to help with her suffering, but Hannah did not feel that it was sufficient. She would have wanted to give her more help to ease her suffering, even if it would have shortened her life, especially during the last two days. Hannah’s mother had also spoken to her family doctor in Mexico and told him that she did not want heroic measures used to prolong her life. Hannah’s mother reached this decision after seeing her husband suffering near the end of life with tubes being inserted into his body to prolong his life. She had gotten the doctor to put her mother’s wishes in writing. She conveyed these wishes to the doctor. Hannah’s mother had also had a frank discussion with Hannah about this issue. Hannah described herself as a fairly religious, or Orthodox, Jew. She had her children attend the religious tract of schools (in Israel, there are two tracts of public schools—religious and non-religious). She did this because she felt that the less religious school would not teach them any Judaism, and she was a Jew, not just an Israeli. Once she had her children attend the more religious school, she felt that she needed to be consistent with what they were being taught. She also attended an Orthodox synagogue. Hannah felt that although she was a religious person and did not want to interfere with God, she did not want her mother to suffer. She did not consult a rabbi in this case. She felt that if there had been a friendly rabbi who would have understood she might have considered it, but once a rabbi told her waht to do, she would have had no choice and would have had to follow his advice. Hannah did seem to want to avoid making a religiously inappropriate decision. She felt that her daughter knew what to do religiously and would not have let her “do something wrong.” She also knew that the doctor at the nursing home was religious, and he agreed that it was alright not to revive her mother. He told her that that would be mixing in with the decision of God, especially when there is nothing more you can do for her. Hannah also noticed that the attending physician on her mother’s case wore a kippah and she therefore assumed that he would know what was halachically (i.e. religiously) allowed and what they were not allowed to do. Hannah did feel that religious influences in these kinds of decisions was a good thing. She felt that the moment there is law without religious influence, it is a problem. Religion gives a face to being Jews and allows Jews to be one people. Although the less stringent religious movements (Conservative and Reform) make it

CHAPTER 2 10

easier and more comfortable to be Jewish, being Jewish is not about comfort. It means that one has commitments. Hannah was not sure if there is an afterlife, but she hoped there was one and that it was a better, quieter life. She had heard that the more one suffers on earth, the less one will suffer in heaven. She hoped that her mother’s suffering would help her get into heaven. Hannah’s sister is six years younger than Hannah, and Hannah has always considered herself to be the stronger one and the one who makes most of the decisions. However, Hannah spoke with her sister before deciding what to do about their mother’s care, and both she and her sister agreed that their mother would not have wanted to live in the condition she was in. Hannah’s sister also remembered having spoken to their mother about this issue, and her mother had expressed similar wishes of not wanting her life to be unnecesarily prolonged to the sister. By the time she was brought into the hospital for her last hospitalization, Hannah’s mother was not competent to make decisions for herself. Although she was not completely comatose, she was drifting in and out of consciousness, had dementia, and was unaware of her surroundings. The first doctor on the case was Dr. Goldstein, an American doctor who had immigrated to Israel soon after his medical training. He did not consider a feeding tube to be part of heroic measures. He felt that although she was clearly dying, starving to death is painful, and he felt that he could improve her comfort level and possibly even her condition by inserting a feeding tube. He tried and failed to insert a feeding tube prior to speaking with Hannah. However, after Hannah told him she did not want it, he decided to respect her wishes and not try a second time to insert the feeding tube. As to who should decide these issues, Dr. Goldstein felt that a patient has a right to decide for himself or herself what treatment he or she wants. Since Sarah had requested no rescuscitation, they wrote a do-not-resuscitate order on her chart. As long as a patient is competent and expresses such a wish, the doctor should respect it. If it is not clear what the patient’s wishes are, then it becomes more complicated. If the situation becomes one of medical futility, in which it would be futile to try to revive the patient, then the medical staff makes the decision as to whether or not a patient should given a do-not-resuscitate order, and the family is not consulted. However, there are many gray areas, such as where the prognosis is unclear. In these situations, Dr. Goldstein would go to the family and try to find out what the patient would want. For example, if a patient has a stroke and is comatose, it is difficult to determine at what point it would be futile to try to revive him and what his quality of life would be like if they did. In Sarah’s case, Hannah’s interpretation of her mother’s wish for there to be no heroic measures included the refusal of the feeding tube. Dr. Goldstein thought that this was a reasonable position. He also felt that it was not a lifesaving issue and it would not affect Sarah’s prognosis. Two days later, Dr. Marks came on the case as the primary treating physician. She was a young, Israeli born doctor who was still a resident. She knew the patient was dying but felt that food and fluid are part of basic care and that a patient should not be starved to death. She feels strongly that quality of life of the patient should

THE CASE OF SARAH 11

not be a consideration and that it is not up to the doctor to withhold treatment. She feels that it is a dangerous precedent to set to allow doctors to decide who should live and who should die; therefore she feels that, unless the patient is competent to say otherwise, a doctor should continue to fully treat the patient regardless of the patient’s condition or how long he or she has to live. Dr. Marks felt that it is a doctor’s job to save lives, not to make these kinds of life and death decisions. Yet, she is beginning to realize that sometimes it is impossible to save a life and clinically futile to try. For example, if a person who has had a heart attack resulting in brain damage subsequently has convulsions, there is no chance that he would survive after being rescusitated. In this case, there is no point in trying to prolong the person’s life. She admitted that she is still struggling with this issue. As to how much pain medication she would give to a patient who is in severe pain, Dr. Marks told me that she would not give enough medication to kill the person, even if it were necessary to ease the patient’s pain. She had one family who kept pressuring her to give more pain medication to their relative who was dying of cancer, claiming that he was suffering greatly, and she refused. She did not feel that the patient was in great pain and felt that she was giving him sufficient amounts of pain killers. As to who should make these decisions, Dr. Marks felt that a person should be allowed to make decisions about one’s own care, but it is dangerous to let another person, including a family member, decide these issues. She agrees that a person should have control over his or her own body and that the doctor should not be allowed to prevent a person from killing oneself. If the patient herself had refused the feeding tube, she would have aceded to her wishes. But in this case, she did not feel that the patient had clearly stated her wishes regarding a feeding tube. She had said that she did not want “heroic measures” used, and therefore they did not insert a respirator. However, Dr. Marks did not feel that a feeding tube constituted heroic measures. Interestingly, Dr. Marks does not consider herself to be religious. She is not sure where her views on these issues come from. However, she does admit that she has been influenced by her grandfather, Prof. Yishayahu Leibovitch, a famous Israeli philosopher who wrote extensively on a variety of subjects, including medical ethics. Dr. Marks told Malka, the nurse on duty, to insert the feeding tube, even though Hannah was against it. Malka was also against putting in the feeding tube. She felt that the patient was dying and that there was no point. She also felt that Hannah’s wishes should have been respected. She agreed to put the feeding tube in, but told Dr. Marks that if the procedure did not go smoothly, she would not attempt it a second time. Malka felt that Dr. Marks did not seem to know that the patient was so close to death. She had been without food for 2-3 days. She felt that they should have given her intravenous fluids and let her die in peace, that there was no point in giving a feeding tube to a patient who was so close to dying. Malka considers herself to be religious. She sends her children to a religious school and lives in a religious neighborhood. She keeps the sabbath and celebrates

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all the Jewish holidays. She is from a religious kibbutz, and her family is from a religious community in Poland. Malka believes that people should be allowed to die without agressive treatment and without making people suffer in the last few days of their lives. According to Malka, although Judaism stresses that life is very important and one cannot just take a life, if a patient is suffering and near the end of life, one is allowed religiously to let him to die by himself or let nature take its course without medical interference. It is also acceptable to pray that the patient dies quickly if he is suffering. She feels that it is important to show respect for life by allowing someone to die without suffering. This shows more respect for life than treating one aggressively. At first, Hannah asked Malka and Dr. Marks if the feeding tube was really necessary. She did not want her mother to suffer at all. Malka agreed to put the feeding tube in, but said that if it had been difficult, she would have stopped and told the doctor to leave the patient alone. She thinks Dr. Marks would have listened to her, as they often listen to nurses on these issues. Malka was able to put in the feeding tube; and, later that day, Sarah died.


Analysis

The first issue that comes to mind is who makes the decisions regarding the patient’s medical care. In this case, there is a conflict between the family member and the doctors as to whether or not a feeding tube should be inserted in the patient. Hannah feels that it will not help her mother and will only cause further suffering. Malka agrees with her. Both Dr. Goldstein and Dr. Marks feel that the feeding tube will help the patient and should be inserted. Yet, Dr. Goldstein is willing to acede to the wishes of the patient’s daughter whereas Dr. Marks feels that it is her duty as a physician not to allow the patient to “starve to death.” Both of these doctors work in the same unit of the same hospital, yet in one case the daughter is allowed to make the decision for her mother’s care, and the doctor maintains control of the decision in the second case. Of the two doctors in this case, each saw the situation differently and each had his or her own opinions about when and how much treatment a patient should receive. Hannah also had strong opinions about how her mother should have been cared for but was only allowed to override the doctor’s opinion in one case. There appears to be no set hospital policy that dictates who has the right to make such decisions. Dr. Goldstein explains that in some cases, in which the physican/s feel that further treatment is medically futile, the doctors make the decision and may not even inform the family of their decision. In gray areas or situations where the potential outcome is less clear, the doctors allow more input from the family in making these decisions. In this case, the doctors followed the family’s wish to place a do-not-resuscitate order on the patient, although one may argue that the patient herself made her wishes clear at an earlier point in time and they were following her wishes. There is also the issue of what is meant by the term “heroic measures.” Why is there no clear hospital policy or legal guidelines to determine what is included in the term “heroic measures”? One must assume that this issue has come up repeatedly, especially in a hospital ward where decisions are constantly being made regarding how much to continue to treat a dying patient. Yet, when the issue comes up here, several people interpret it differently; some deem it to include the refusal of a feeding tube, and others see a feeding tube as a part of basic care and thus do not consider it heroic. The result is that it is interpreted on a case-by-case basis, depending on which doctor is on call that day and who is in charge of the particular patient. This lack of rules within the hospital setting may surprise those who view Jewish law as strict and unyielding for those who feel religiously compelled to live by the law. While this may be true with regard to certain ritual matters (i.e. laws of kashrut, prohibition against working on Shabbat, etc.), in the realm of medical ethics, there are many different, sometimes contradictory, rules and rabbinic interpretations of a person’s obligations, especially in the area of end-of-life decisions. For instance, while a majority of rabbis would allow a person who is near the en of life and suffering to forego medical treatment, a minority insist that one is obligated to fight against death, to continue to hold fast to every second of life

CHAPTER 2 14

regardless of the length or quality. One must also keep in mind that the majority of Israelis are ardently secular and do not feel bound to follow religious law. Others may wonder why, in a country where there is a strong military presence, stringent military rules do not play a role in encouraging rules and routines in non-military settings such as the hospital. On the contrary, the structure of Israeli’s army may be seen as further proof of Israel’s reluctance to establish regular routines. Israel’s army is decidedly egalitarian and has even been criticized for its lack of organization and discipline. One exemplary anecdote recounts an Israeli professor who informed his class that in some armies, when a jeep gets stuck, a lieutenant would order his underlings to push it out of the mud. This story was met with a spontaneous burst of laughter from his students, most of whom had served in the Israeli army. The norm in the Israeli army would be for the lieutenant to personally participate in pushing the jeep out of the mud (Curtis 1973:425). Another example of the lack of order and discipline in Israel’s army comes from a story told by an Arab university student who was briefly detained at a military camp just after the 1967 war. He describes his amazement in seeing the slovenly appearance of the Israeli soldiers and the individualism displayed by them. He noticed young soldiers playing ping-pong with officers and everyone cursing at one another, remarking to his friend that in Jordan, a soldier would never behave in such a way (Schipler 2002:196). When I asked people why these rules and definitions were so unclear, they gave me various answers. Some felt that it was because the founders of the medical profession in Israel had Germanic roots and that therefore this authoritarian model established by the German medical establishment has continued to influence the profession. Others told me that it was dangerous to allow family members to have complete control over such decisions since they were more likely to have ulterior motives. I further observed that most family members were afraid to make these decisions by themselves and therefore ceded much authority to the doctors. Another possible explanation, one that I observed repeatedly both in the hospital setting and in Israeli society in general, is that there is a general reluctance in Israel to establish regular routines or procedures. One may theorize that this is a reflection of the unpredictability of life in Israel and is how its people adjust themselves to this. In a country where there have been several wars in its brief history, terrorist attacks and suicide bombings, and a constant influx of enormous numbers of immigrants, it is impossible to maintain an organized and routinized life. Yet life must go on, and people must continue to function. The result is that in Israel things tend to be done in a haphazard manner and decided at the last moment. There are many examples of this lack of the establishment of a routine in daily life in Israel:

In the school setting, I was given a written schedule of which subjects my daughter had on which days so that I would know which books she needed to bring, what days she had to wear gym clothes, etc. After 6 weeks, the schedule was changed without my being notified, and a new schedule was never written.

Children may be told the day before, or sometimes the day of, a birthday party. It is extremely difficult to buy a present or reorganize one’s life or change existing


plans to allow the child to attend the party on such short notice. One night, we were sitting eating dinner when a friend of my daughter’s knocked on the door and asked if she was attending their classmate’s birthday party. Apparently, the child had written his invitation to the party on the blackboard in class a few hours earlier.

My younger daughter had a gymnastics class that she attended every week. Near the end of the year, we were not sure if the classes were over or whether she was supposed to attend another class. When we inquired, we were told that my daughter was supposed to be in an exhibition that day (four hours later) and was supposed to wear a particular outfit.

One day, there was a snowstorm in Jerusalem, and we were not sure if there was enough snow to cancel school for the day. When we turned on the television to find out, the announcer said that school would not start at the regular time, but they had not decided if it would start at 10:00 a.m. or if it was cancelled for the entire day.

School strikes occurred periodically throughout the year. It would begin with a rumor or “talks” of a strike reported in the newspaper. We would not know until 7:00 a.m. on the morning that the strike began whether we were sending our daughter to school. We did not know how long the strike would last. There would also be a listing of who was striking that particular day—whether it included elementary or just high school, which preschools were included, or whether it was a general strike that also included the buses. One morning, I brought my daughter to school, only to be told that they had decided to call a strike and I needed to pick her up at 10:00 a.m.

Apartment numbers, and sometimes buildings, quite often do not have their numbers written on them. Thus, when someone is looking for a particular apartment, he must sometimes resort to knocking on doors and asking neighbors for a particular family or stop someone on the street who may be able to help.

Television programs are listed in the TV guide with specific times; yet the programs do not necessarily start when they are listed. A program may be listed to start at 12:05 p.m. but may not start until 12:13 or 12:02 or occasionally may have been changed to a different time or cancelled.

Stores would close for holidays, but nobody was sure how many days they would stay closed. For instance, because it was the fiftieth anniversary of the founding of the state, the government extended Independence Day to make it a two-day holiday: Thursday and Friday. Nobody, including several Israelis I called, knew if that meant that the supermarket would be closed on Friday as well as Thursday (plus the regular closing on Saturday for the Jewish sabbath). During the week of Passover, the stores were closed for the first two days, but nobody was sure what hours the store would be open during the rest of the week. Children were not in school and employees did not want to work; yet they could not close the supermarket for an entire week. Instead, they would randomly close the store early in the afternoon—some days at 1:00 or 2:00 p.m., other days at 4:00 or 5:00 p.m.

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When it appeared that a war between the United States and Iraq was imminent, which would have put Israel in danger of being bombed by Iraq, the government needed to distribute gas masks to residents. However, it was unclear who was entitled to receive one, and every day in the newspaper the government seemed to change its mind. One day they decided that foreign workers should receive them but then decided that only those who lived near Tel Aviv should get them. Those on tourist or student visas were constantly being given different stories, and everyone who held such a visa was scrambling around trying to get them, being told contradictory stories. Finally, we were told they were available at a particular department store for a sizable deposit but that children’s sizes were not available. This was the status as of two days before the war was set to start.

In the hospital setting, one can see the influence of this lack of routinization in the reluctance of the doctors and hospital to establish regular rules or guidelines to deal with these life-and-death issues. One doctor who had moved to Israel from New York described to me how, whereas in his hospital in New York they had ten different forms for do-not-resuscitate orders that a patient or family had to sign, in his hospital in Jerusalem there were no forms, no requirement that the families even be notified of such decisions, and no set procedure that had to be followed. Instead, it was done on an ad hoc, case-by-case basis. As can be seen in Sarah’s case, this lack of routinization makes it unclear who has a right to decide these issues between the family and the medical staff, or even whether one doctor may override a previous decision of another doctor. In fact, in one case I observed, there was a written do-not-resuscitate order in the chart, yet the resident in charge of the patient told me that she had strong feelings for this young patient and intended to rescuscitate him if he went into arrest, regardless of what the order in his chart was. The result is that there are a great many inconsistencies in how these issues are decided and a lack of predictability over how a future case may be dealt with. The next issue deals with the influence of religion on the decisions made in this case. Each person seems to have his or her own interpretation of what Jewish law requires of them and what role it should play in influencing the final decision. Hannah sees herself as a religious person and observes the religious customs and rules, such as observing the sabbath and attending religious services regularly. Yet, when it comes to these end of life decisions, she expresses ambivalent feelings about the role that religion should play in influencing her decision. On the one hand, she seems to say that she does not want to consult a rabbi since he may tell her to do something she does not want. She also tries to validate her belief that her mother should not suffer by looking for religious guidance that would support the view that God would not want someone to suffer. This implies that she feels, at some level, that religiously she is required to do everything she can to save her mother’s life, which she does not want to do. Therefore, she resolves this conflict in her mind in two ways: by not seeking a “formal” opinion from a rabbi and by seeking validation in a more subtle way, such as assuring herself that the doctor who wears a kippah would not allow her to do anything she’s not supposed to. Yet, one could argue that, in the end, her ambivalent feelings about the religious requirements to do everything


possible to save her mother’s life affected her in that she did not fight harder or argue more vigorously with the doctor when she insisted on inserting the feeding tube. Malka, the nurse who is asked to insert the feeding tube, also describes herself as a religious person. Yet, in her view, Jewish law allows one to let a person die when there is no longer any hope and in fact allows one to pray for a swift and painless death. (Shulchan Aruch, Yore De’ah 339:1; Rabbi HaLevy 1981:297; interview with Rabbi Avraham Steinberg, M.D., November 9, 1997.) In her case, we can see that in this situation, where the rules are so unclear as to what should be done, Malka has strong feelings and looks to religious law to validate her feelings and fill in the gaps left by the lack of rules or hospital regulations. The result is that religious feelings strongly influence what is going on in two ways. First, people look to the religious rules either to tell them what to do or to justify what they want to do in a situation where the rules are unclear. Secondly, in Hannah’s case, in which she expresses such ambivalent feelings about what her religious obligations are, it subtly inhibits her in her quest to fight the doctors and allow her mother to die without being connected to a feeding tube. Thus, even though she feels that her mother should not suffer and disagrees with what the doctors want to do, she still holds back in fighting them due to her fear that religiously they may be doing what is “correct” according to religious doctrine. One other way that religious influence affects this case is that it may be argued that the fear of violating the religious rules on these life-and-death issues is one reason why the hospital does not have a clearer policy or regulations on these subjects. For instance, when I asked the director of Hadassah Hospital why there was no formal, hospital-wide policy on when to allow do-not-resuscitate orders, he told me that there were too many cultural and religious differences on this issue and that they could not write a policy to which everyone would agree. What he really meant was that the religious and the non-religious could not agree on a policy, nor would either faction compromise on the issues. In a setting in which there are Western-trained medical doctors who expect to apply modern medical standards alongside ultra-religious patients and families who feel religiously bound to abide by their stringent religious standards, it is extremely difficult to establish hospital guidelines or policies that would not deeply offend anyone. This is different from other multi-cultural or ethnically diverse setting in that Israel has both an official state religion with a politically powerful religious minority and a secular, democratically-oriented majority that cedes power to the religious, yet refuses to be bound by their rigid religious standards. The result is a lack of agreed-upon standards or guidelines with respect to do-not-resuscitate orders. Yet, these orders need to be, and in fact are, made within the hospital.

CHAPTER THREE

THE CASE OF REUELAn Ultra-Orthodox Family Relies on their Religious Convictions in Dealing

with a Dying Father

The sight of Reuel Bronstein, an eighty-nine-year-old man attached to a respirator and barely clinging to life was a sharp contrast to the man described by his Children as a “ball of fire,” a man who, as a rabbi, could deeply inspire his congregants and as a family man would scream and argue with his mother-in-law every time she came to his home to care for a new baby. This once vivacious and feisty man lay silently in his hospital bed, the only signs of life being his rhythmic breathing with the aid of a tube pumping oxygen into his non-functional body. Yet, despite his extremely poor prognosis for recovery and even poorer prognosis of regaining a meaningful life, his children never wavered in their steadfast belief that his body should be maintained on the respirator for as long as was required under religious law, regardless of whether his condition lasted for months or even years.

Mr. Bronstein was brought to Shaare Tzedek Hospital, a religious hospital in Jerusalem, when he became too ill for his son and their family to care for him. Shortly after his being admitted, his condition deteriorated to the point where he was unable to breathe on his own, and he fell into a coma. He was placed on a respirator and feeding tube. By the time I left Israel five months later, his condition had not improved, and he remained in a coma, with his body being maintained by the respirator and other life-sustaining tubes. Mr. Bronstein was born in Poland. He left there for the United States shortly before World War II, intending to bring his wife and two children to America to join him. Before he could get them out World War II broke out, and his family was killed in the Holocaust. He never forgave himself for their death. Reuel remarried in New York and had nine children with his second wife. In 1973, he moved to Israel with five of the children who still lived with him, joining two others who had already moved there. The Bronstein family are members of the ultra-Orthodox community in Jerusalem. They are a close-knit family, and, prior to his hospitalization, several of the siblings took turns caring for their father in their homes. After he was brought to the hospital, his children wrote out a chart of who should visit their father at what time and took turns staying by his bedside, praying and caring for him. All of the four children and one son-in-law whom I interviewed considered themselves to be deeply religious Jews and relied on Jewish law in making all decisions in their lives. They were all in agreement that they needed to follow halacha (Jewish religious law) in deciding how their father should be treated. I have included this case specifically to illustrate the difference between how decisions are made by ultra-religious families and those that are less religious and feel less obligated to follow halacha in making medical decisions. It is interesting to note that even families who consider themselves to be religious (i.e. Orthodox, but



THE CASE OF REUEL 19

not ultra-Orthodox) do not follow Jewish law to the same extent as the Bronstein family and others within the ultra-Orthodox community. I first interviewed Reuel’s son Jacob, who took the most intellectual approach to the situation. He was knowledgeable about religious law and had consulted with a “rav,” whom he describes as a religious expert, as to various issues that had arisen with regard to his father’s care and treatment. He also sought an opinion from a Kabbalist, a religious mystic, as to what they could do to help their father. Ephraim was the youngest child, who seemed the least able to accept the severity of his father’s situation. He was shy and reserved and seemed afraid to disturb the doctors to ask about his father’s condition. Chaya was the second oldest child and had been the first to move to Israel. She described herself as the “black sheep” of the family because, at one time, she dressed more modern and was willing to move away from home. However, she told me that she still considered herself to be deeply religious and had seen too many miracles not to believe in the power of God. She was the most willing to speak to me and the most open about her feelings. Shoshi was the most nurturing of the children, choosing to spend a great deal of time caring for her father’s physical needs by wiping his forehead, taking his temperature, and monitoring his condition throughout her time with him. In a world where children are central and large families are greatly valued, Shoshi had been unable to become pregnant. Isaac was a son-in-law of Mr. Bronstein. He was married to one of Reuel’s daughters and was a full time student at a yeshiva, where he studied the Talmud full time. He was quite adamant in his views that everything was decided by God but was a bit vague when I asked him more specific questions regarding what should be done for Mr. Bronstein. When I raised the issue of when life ends and thus when the respirator may be removed, all of the family members agreed that they should go by religious law in making this decision. However, some were less knowledgeable than others as to what was allowed and there was some contradiction about who should make the decision between the family and the doctors. Jacob was aware that there was some debate within the religious Jewish community as to whether the decision should be based on the cessation of the brain or the heart. He felt that most halachic (i.e. Jewish religious) experts would go by the heart. However, he told me that he had not fully decided what he would do, although if he had to decide at that moment he would have to go by when the heart stopped. He also said that the decision should be made according to Jewish law and that the doctor should be brought in to verify medically whether or not the heart had stopped. Jacob also told me that before he made such a decision he would consult a rabbi who is an expert on these matters as it is too complicated and important an issue to be decided by a local rabbi. Chaya was unsure whether according to Jewish religious law one goes by the heart or the brain in determining whether someone is dead (and thus the respirator and other tubes may be removed). She later said that it was something that was supposed to be decided by the doctors. In fact, before I asked her, she had not given much thought to the issue, even though her father was so close to death.

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Similarly, Shoshi was unaware of how one determines the time of death, although she did feel that it was a decision that should be made in accordance with Jewish law. She also had not thought about who should make the decision or how it should be made. Shoshi did not feel that her father would have wanted to die in this manner. She remembered him saying that, to him, this was not life and was not death; rather, it was a slow death. Nevertheless, she knew that her father was a deeply religious man and would never have asked to have his life ended (i. e. before it was allowed according to Orthodox Jewish law). Their brother-in-law, who was a full time student at a yeshiva (school for studying Talmud and Jewish texts), was unaware of what the standard was, according to Jewish law, for determining when a person is dead. He was aware that one may not give his or her life to save another, and, therefore, organ transplants were not allowed according to Orthodox Jewish law since the organ must be removed before the heart has stopped beating. Dr. Belkin, the physician in charge of Mr. Bronstein, was a religious man who wore a kippa (yarmulke) at all times. He was not ultra-Orthodox, as was the Bronstein family. However, he considered himself to be an observant Jew. When I asked him when he would consider removing Mr. Bronstein from the respirator, he told me that he would only do so once he considered a person dead according to Orthodox Jewish law. To him, this meant that the person’s heart had stopped. I tried several times to clarify that he went by the cessation of a heartbeat rather than by brain death, but he was somewhat vague in his answers to these inquiries. He told me that as soon as the heart stopped, the brain would also cease to function. When I asked him what he would do if the brain stopped but the heart continued, he again repeated his previous answer. He told me that this was the reason they did not perform organ transplants at Shaare Tzedek Hospital, since they had to wait for the heart to stop before they could disconnect the respirator and pronounce someone dead. (The hospital policy in Shaare Tzedek is that they will not perform organ transplants within the hospital. However, if a patient or family wants to donate organs, the hospital will cooperate and will maintain the body until it can be transferred to Hadassah Hospital.) I then asked Dr. Belkin what Mr. Bronstein’s condition was and how long they intended to keep him alive on the respirator. Dr. Belkin told me that Reuel Bronstein still responded to pain but did not respond to verbal commands or any other stimuli. Although he no longer had any higher brain function left and most of his brain function was gone, he did not meet the criteria for brain death. He told me that the hospital could not transfer Mr. Bronstein to another facility because he was dependent upon the respirator. Therefore, they would continue to maintain him in the hospital until his heart stopped. He told me that they once had a patient on their ward who remained in this condition for two years before her heart stopped and she was removed from the respirator. Dr. Sonnenblik, the head of the department where Mr. Bronstein was being treated, confirmed what Dr. Belkin had told me about the hospital’s policy. He was aware that Reuel Bronstein was in a deep coma and had suffered from severe, irreversible brain damage but did not formally meet the criteria for brain death. He confirmed that they intended to maintain him on the respirator until his heart stopped. He told me that there was nothing they could do but leave him in this


condition. In fact, he remembered a patient on their ward who had survived for three years in this condition. In contrast, Professor Brezis, a physician at Hadassah Hospital who also considered himself to be a religious Jew, told me that if Mr. Bronstein were his patient he would try more aggressively to wean him from the respirator, especially if they knew that there was irreversible brain damage. He told me that he would try to reduce the ventilation, which he felt was permitted by Orthodox Jewish law. He also told me that he knew of another well-known physician who has written extensively about Jewish medical ethics who agrees with him that reducing the level of ventilation on patients in Mr. Bronstein’s condition is permitted according to halacha. Another subject I raised with the family was how much their father’s quality of life, and especially their perception of how much suffering he should endure, mattered to their making decisions regarding his medical care. Generally, most of Reuel’s children felt that it was not up to them to decide whether his quality of life was not worth living. Rather, this was up to God to decide, and they did not feel they could terminate his medical treatment as long as he was still considered to be alive, regardless of the hopelessness of his condition or the diminished quality of his life. Furthermore, several siblings felt that there was a point to the suffering and that his degree of pain should not be a factor in making decisions for their father. Chaya told me that she cared for her mother-in-law in her home for three years before she died of cancer. This was a great burden on Chaya in that she also had three children and a house to manage, but she felt obligated to do so. Although her mother-in-law was sometimes in so much pain or discomfort that she said she wanted to die, Chaya felt that she was really afraid to die and wanted to stay alive to see her grandson’s wedding. Chaya’s husband could not stand to see his mother in such pain and would have assisted his mother in ending her life, but Chaya disagreed and continued to care for the woman. She described how the last three months of her mother-in-law’s life were “hell” and how she had to administer pain medication for her, but she continued to care for her in her house until she died. Chaya felt that her father would never have wanted to end his life in this way and that she would never have thought that he would die like this. She described him as a “ball of fire” who was quite feisty and, at times, difficult to live with. However, she also said that he was quite religious and would never ask to end his life. Several of the siblings told me that there was a point to suffering, that sometimes a person may need to suffer in order to enter heaven. Both Chaya and Shoshi told me the same story that they claimed was true: A doctor in Jerusalem was caring for a religious man who was suffering from terrible pain. Feeling he was performing an act of compassion, the doctor finally “pulled the plug” and allowed the man to die. Afterwards, the doctor kept having dreams that the patient was very angry with him. When he consulted a rabbi as to what to do, the rabbi told him to ask the man in his dream why he was so angry. The patient, in the dream, then told the doctor that he was supposed to have suffered for 30 days in order to get into heaven. The doctor then had to perform mitzvot (good deeds) in order to help the man get into heaven. After that, the nightmares stopped. Both Chaya and Shoshi told me that this story showed that it was not up to them to play God and decide how long they should allow their father to continue to live in

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his present condition, regardless of the hopelessness of his condition or whether he could be suffering. They realized their father’s poor prognosis and that even if he were to awake from the coma, he would have an extremely poor quality of life. However, they felt that it was up to God to decide when to end his life. Chaya felt that if a patient is in pain, he should be given painkillers, but it was not a reason to end one’s life. Chaya further told me that even if someone were in a persistent vegetative state, with no hope of recovery, the person’s life should be prolonged. She realized that it was a “pitiful” situation, but she felt that such decisions are up to God. Chaya stressed that our reward in the next world is dependent on our suffering in this world. When I asked her why God would cause someone to suffer, she said that God has a reason for everything and we do not always know why He does what He does. She told me that she had been unable to have children for many years and then had three children. She felt that this was God’s way of making her appreciate her children. Isaac, a son-in-law of Reuel, also stressed that it was up to God, not them, to decide when a person’s life should end. He agreed that there is a purpose to suffering in that it can be a form of atonement. He further stressed that it is not up to us to question why God does what he does and that we do not have to understand all of God’s ways. He felt that “everyone gets a different deck of cards to play with. Success doesn’t necessarily mean that God likes you. . . Who says we have to understand why God does what he does? It is not for me to question what He does or wants us to do. Everything is controlled by God.” He further told me that God gives everyone what he or she needs. He told me a story about two children, one Jewish and one not Jewish, who both asked God for a bicycle. The non-Jewish child got one while the Jewish child did not. This showed that God answered both of their prayers because they each got what they needed. Shoshi agreed that “this world is hard to understand. In the next world, we will. How can my father still have to suffer after what he’s been through? How can we understand suffering?” Jacob essentially agreed with the others but was a bit more troubled about how much suffering one needed to endure. He agreed that it was up to God to decide when his father’s life should end but also felt that they should not cause him any more pain. Unlike the others, he said that he would agree not to resuscitate his father if his father’s heart stopped (i. e. a do not rescusitate order). He stressed that they should not take “a second of life from him but also should not cause him any suffering.” When I asked him what he thought of a recent case that was pending in the Israeli courts of a severely retarded child whose parents wanted to stop his dialysis, Jacob said that the child should be allowed to live, no matter how retarded he is, as he still had a functioning body. However, his father was 89-years-old and had already accomplished much in his life and did not have much quality left to his life. He therefore felt that, although they should not take a second away from his father’s life, they should not do anything to unnecessarily prolong it, such as revive him if his heart stopped. As to how much pain his father should endure, he was more ambivalent about this issue than the others. He felt that any pain he may have been suffering from the respirator was worthwhile in order to keep him alive. However, he was willing to


consider whether pain caused by cancer would be worthwhile. He also felt that one should look to what standard medical procedure would dictate in such cases. If using a respirator is considered to be standard procedure, then one should use it to prolong a patient’s life. Jacob did agree with the others about the meaning or purpose of pain—that “suffering can cleanse one’s soul and make it pure for the next world.” He felt that a person “goes to God, who’s a spiritual being we can’t comprehend. We get rewarded or pay a debt. . . If you believe in God, then you can live with questions you can’t answer, why things don’t seem fair. There must be a creator, but we don’t understand all His ways.” He also felt that our bodies belong to God and that it is not up to us to take a life prematurely. Several of the family members spoke about God performing miracles or of calling upon God to perform a miracle to heal their father. Chaya told me that she has seen too many miracles not to believe in God. She said she had had several ectopic pregnancies before God gave her three healthy children. She said that her mother-in-law lived for a year after they told her she would die because God had blessed her. She told me that she writes poetry quickly but can never think of a title. God then provides her with a title to show her that she was really working through Him. Chaya also told me another story of what she believed was evidence of God’s presence. When she was caring for her mother-in-law, Chaya started falling down, and the doctor suspected that she had a brain tumor. They were able to rule this out; however, she felt that this was evidence of God calling to the doctor through her. It was God’s way of telling this non-religious doctor that God was there, and she felt it taught him a lesson. She also felt that man has the right to make choices, but God can put ideas into someone’s head. Chaya also told me that, in addition to consulting a rabbinic expert, her brother Jacob also consulted a Kabbalist as to what they should do. He told Jacob that their father had a death sentence on him that could only be overcome by all of his children going to the Western Wall to pray together. Following this advice, they all went to the Wall, in the pouring rain, to pray together. Afterwards, their father did not improve. Martin told me that she had been sceptical of the Kabbalist before this. As to whether or not there is life after death, those whom I asked about this agreed that there was an afterlife and gave me similar descriptions. Jacob told me that a person’s spiritual soul continues after the body dies. This includes a person’s desires, spirit, feelings and fears. He told me that a person goes to God when he dies and that he either gets rewarded or pays a debt. Jacob told me that when he was twelve years old, he was in an accident that temporarily made him clinically dead. He remembered feeling at ease and seeing a bright and soft light. He also remembered looking at his body on a stretcher and his parents crying. Jacob said that most religious Jews believe in some form of afterlife, that it is part of their beliefs. However, there may be a difference among people in their degree of belief in or conception of an afterlife. Chaya agreed and was certain that there was an afterlife. She felt that all people, whether they were good or bad on earth, will come to court before God. In order to be eligible to get in (to heaven?), one must be worthwhile. She stressed that our life

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on earth is only temporary, while the real world—the after world—was infinite. She told me that perhaps it was not so sad that her father was dying in that he would be happier and would be with their mother, who had already died. She felt that his soul would live on and that he would always be with them, just as her mother’s soul was with them for all happy occasions. As to who makes the decisions between the physician and the family, in this case there did not appear to be much conflict in that all parties seemed to agree on what course of action to take in treating Mr. Bronstein. The hospital as well as the attending physician were religious and thus agreed with the family that they needed to follow religious rules in making medical decisions in this case. Most family members were somewhat vague about who was supposed to be making the decisions, and several seemed to imply that they were willing to allow the physician to decide. Some relied on their belief that the doctor was an instrument of God and that one was allowed to give him the authority to heal the patient. This was the sentiment expressed by Jacob, who also felt that a doctor is allowed to “go against God’s will” to make people well. He also said that this was not really going against God’s will, since doctors are given permission by God to make people healthy. This same opinion was voiced by Chaya as well. She expressed it more in terms of the doctor being God’s instrument when God allows the doctor to heal people. As to whether the doctor or the family should make end-of-life decisions for the patient, Chaya said that it was sometimes good not to have to decide. She felt it was a terrible burden to have to make such choices and that sometimes even the family members or those who consider themselves to be closest to the patient do not really know what the patient would want. She told me that when she was three years old she was in a car accident and her foot was badly injured. Her father called in an expert who told them not to put a pin in her foot. She said this was a part of her past, part of what makes up her opinions and attitudes. She felt that nobody could really say what is going on in another person’s mind, what someone else is thinking or would want. Therefore, one cannot make a decision for another person. Chaya also gave an example from the movie “Bridges of Madison County” (in which the main character, after her death, leaves a will asking that her ashes be scattered over the bridge so that they can be mingled with those of a man with whom she had had a secret affair many years earlier). Martin said that nobody, including her own children, really knew or understood how she felt or why she wanted to be cremated and have her ashes thrown over the bridge. Therefore, how can one person make a decision for someone else when nobody can really know what’s in another person’s heart or mind. Chaya did say, however, that the doctors did not ask for the family’s opinions, but they gave it to them anyway. She and the others seemed to imply that they wanted the doctors to know that their father should be given the maximum care and treatment. Shoshi also added that she did not think that the doctors could disconnect the respirator without the agreement of the family, but she was not sure about this. Ephraim also thought that they would continue to keep him on a respirator until his heart stopped but was unclear about who made these decisions. Thus, there was some ambivalence between not wanting to make decisions and not giving complete authority to the doctors.


Dr. Belkin also told me that the families sometimes had ambivalent feelings about how much family members should be asked to make decisions. Although it was clear that there were some decisions that he would not allow the families to make, particularly when he felt that it would violate religious law (such as removing a respirator before a patient’s heart stopped), Dr. Belkin did seem to make some attempts to involve the family in the decision-making process, especially when he was dealing with gray areas. He told me that he once asked the son in a very religious family if he wanted his very ill father intubated. He suggested that the son consult with his rabbi. The son later came back to him feeling very angry and saying that merely by asking the question the doctor was saying that he was willing to “kill” the patient. In another case, also involving a very religious family, there was a question of whether or not they should resuscitate the patient if he went into cardiac arrest. The patient was quite old, had a severe general condition, including malignancies with no hope of a cure, and was demented. After Dr. Belkin spoke to the patient’s daughter at length, the daughter decided not to intubate her father and not to rescusitate him in the event of a cardiac arrest.

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Analysis

At first glance, this case seems to exemplify a religious world in which the rules are clear and unambiguous and dictated by rigidly-adhered-to religious laws. The siblings seem to agree on what medical treatment should be given to their father, when they are allowed to remove him from the respirator, and how the rules should be determined. All four siblings and the son-in-law agree that Mr. Bronstein cannot be removed from the respirator until he is declared dead. No matter how hopeless his situation is and no matter how extensive the brain damage may be, he must be maintained on the respirator, even if he persists in his coma for months or even years. They also agree that no matter how much a person may be suffering, it is up to God and not them to decide when a person should die. Both the doctors at this religious hospital and the family planned to maintain Reuel in his comatose condition on a respirator until his heart stopped. In fact, one of the nurses told me of one case on the same hospital ward in which an elderly woman in a situation that was similar to Reuel’s was maintained on a respirator for four years. In that case, the woman was elderly and may have been brain dead (although she exhibited some eye movement). Although they once made a failed attempt to wean her from the respirator, they kept her alive on the ward until her heart eventually stopped. One may therefore assume that the doctors and family in Reuel’s case were prepared to maintain his body for as long as it took for his heart to give out, regardless of the hopelessness of his condition. In fact, both Reuel’s treating physician and the chief of the Geriatrics ward told me that they intended to keep him on the respirator—the former stating that he did not consider a person to be dead until his heart stopped and that one may not remove a person from a respirator until he or she is dead, the latter lamenting the hopelessness of the situation and the fact that at this hospital one does not have the choice of deciding to remove a patient from a respirator prior to the cessation of a heartbeat. No matter what the outcome, they planned to continue to maintain these strict religious rules in making their medical decisions. The Bronstein family is typical of those who live in the ultra-Orthodox community in Jerusalem in their beliefs and approaches to these types of problems. They are part of a close-knit community whose general approach is to associate only with others within their own group. They hold common beliefs that are derived from their religious leaders and are tacitly understood by all members of the group. All questions are answered by reference to religious laws. As can be seen in this case, all of the family members hold common beliefs about the existence of an afterlife and the purpose of suffering. Several of them gave the same answer regarding their belief in miracles as proof of the existence of God and to explain why one should never question what God does or try to understand His actions. (In fact, both Chaya and Shoshi related the same miraculous story to me.) Rather, one must simply trust that God knows what He is doing and not interfere with His actions, even if we as humans cannot comprehend the reason why He does what He does. These rules are always adhered to and can never be broken. They guide every action and every life decision that is made by members of this ultra-Orthodox Jewish


community. These rules are based on halacha, or Jewish law. If there is any question about what the law demands, the family will consult with their own rabbi, who will issue a rabbinic ruling on what should be done. One commonly held religious understanding that is expressed here is that life is inherently sacred, no matter how hopeless the situation seems and no matter what the condition of that life may be. It does not matter that Reuel is in a comatose state and probably will never awaken. This religious family continues to believe that his life has value. Several ultra-religious rabbis that I interviewed voiced the same opinion: that even a comatose life has inherent value. For instance, I attended a lecture given by Rabbi Emmanuel Jacobovitz, the former chief rabbi of England who is a well-known expert on issues of medical ethics and Jewish law. One woman in the audience, who was a nurse, told him of a case in her hospital in which a seven-year-old child had had a seizure and went into a permanent coma. He had been maintained in this condition, with no hope of recovery, for four years, while his parents continued to suffer and grieve for him. Rabbi Jacobovitz answered that, since the child was completely dependent on others, perhaps he was making a contribution to others by helping his care-givers become nobler people. One cannot say that the child’s life had no meaning, and there was an obligation, under Jewish law, to continue to maintain his body. Thus, regardless of the hopelessness of the situation or the lack of any quality of life, Rabbi Jacobovitz would argue that life itself has inherent value and that it is a violation of Jewish law to end it prematurely. Another view expressed by several ultra-Orthodox rabbis was that Jewish principle compels one to resist death and to fight against it. Thus, the idea of the hospice movement was seen by one rabbi as being a “Christian” concept in that preparing for death is “unJewish.” Another rabbi told me that the idea behind the holiday of Yom Kippur is that one is supposed to try to avoid death by atoning for one’s sins and thus urge God to allow the person to remain alive for another year. Therefore, life in any condition should be considered sacred and worthwhile. Furthermore, life is a gift from God, and it is not up to us to decide to end it. This principle takes precedence over personal autonomy and the right of an individual to control decisions affecting his or her life. Other cases I observed seem to support this view. I routinely observed that patients and their families were not given the option of deciding when to terminate medical treatment in cases of medical futility. In one case, an American Mormon woman was brought to the hospital after having suffered a major stroke. At the time she was admitted, it was clear that she was not going to recover. Although she and her husband had written living wills specifying that they did not want heroic measures to be used in such circumstances, she was placed on a respirator. When her husband questioned the physicians about it, they told him that it was “standard procedure” and that she could not be removed from it until she was pronounced dead. In another case, a man who had end stage Alzheimer’s disease and was in a persistent vegetative state was kept alive on a feeding tube for eight years against his wife’s approval. When his wife complained to the head of the hospital, arguing that it was pointless to continue to maintain him, she was told that the decision was up to the doctors as to what type of treatment to provide to her husband. These cases show how the right to personal autonomy is subverted to the principle of maintaining life at all costs.

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As seen in the Bronstein case, suffering is not necessesarily seen as negative. In fact, several family members felt that suffering was sometimes necessary to allow one’s soul to be cleansed in order to enter heaven. Thus, suffering should not used as a reason to terminate a life, no matter how great the pain or discomfort. (Other rabbis with whom I spoke seem to disagree with this principle and hold that one’s suffering may be taken into account in some circumstances.) This may also serve a psychological purpose of allowing the family to watch helplessly as a loved one suffers and encourages the family to continue to follow the religious rules despite their having to endure the pain of watching a loved one suffer. Although the religious rules appear to be quite clear and strict for members of this ultra-Orthodox community, it is interesting to note that not all individuals are knowledgeable of the laws that they are required to follow. Even Isaac, the brother-in-law who spends his days studying at the yeshiva does not know the rules for when life ends and the respirator may be removed. Although the basic rules of life seem to be known by everyone, such as the requirement that one pray for a sick person or that there is a purpose to suffering , the more technical rules that they are also obligated to follow are not widely known. In such situations, the family must turn to a “rav,” or religious expert, for advice. These religious experts are consulted for the purpose of instructing the family on what religious rules pertain to their situation and what they are required to do. I interviewed several rabbinic experts whose advice was sought by members of the ultra-Orthodox community on issues of medical ethics and what is required of individuals under Orthodox Jewish law. It was not clear what kind of advanced training or expertise, if any, these individuals had. When I asked one rabbi how he acquired his specialized knowledge, he told me that he studied it but would not say where he trained or for how long. Another told me that he had been an important rabbi back in South Africa before moving to Israel. A third told me that his advice is based on his experience and that he understands medicine, has spoken to many doctors, reads up on medical issues and sometimes even watches surgeries. (This third rabbi is quite well-known in Israel. He not only renders religious opinions but also gives medical advice, such as what type of surgery a person should have or with what physician they should consult.) Another, who is not ultra-Orthodox but is quite religious and is sometimes consulted by members of the ultra-religious community, had a medical degree and a rabbinic degree and had written a well-known treatise on the subject. There does not seem to be a set standard for judging the qualifications of those who render these important Jewish legal opinions, often involving life-and-death medical decisions. Rather, these rabbis seem to be chosen more by their reputation in the community and by referrals from others who may have gone to them in the past for advice. (For discussion of the complexity of the matter of authority and the diversity of interpretation of law in the Orthodox Jewish community (Dorff, 1988:338-40). Many of these expert rabbis gave different and sometimes even contradictory opinions on Jewish law. For instance, one rabbi told me that a respirator may be disconnected when a patient is brain dead, as long as the doctor makes sure that the back of the brain is not functioning. Others held that death can only be declared when the heart stops. Thus, what may appear at first glance to be a clear and


unambiguous set of rules may actually be subject to interpretation. Many of the ultra-Orthodox try to resolve this ambiguity by seeking several rabbinic rulings, often abiding by the most stringent response they receive. Several rabbis told me that there are also majority and minority opinions in Orthodox Jewish law on most important issues. For instance, Dr. Avraham Steinberg, a well-known expert in Orthodox Jewish law and a medical doctor, told me that on the issue of whether one can ever issue a do-not-rescusitate order for a patient, the minority opinion holds that one must continue to maintain life at all costs and perform all possible medical procedures, while the majority opinion holds that if a patient’s condition is terminal and he or she is suffering then one may issue a do-not- rescusitate order. Dr. Steinberg is not a member of the ultra-Orthodox community. However, he is widely respected and often consulted by such individuals. Although many ultra-religious families and physicians strictly followed all of the rules and religious requirements, regardless of the cost, personal hardship and suffering it caused, there were some who sought ways to maneuver around them. This was more prevalent among the more liberal Orthodox Jewish physicians and families who, although bound by the same religious laws as the ultra-Orthodox, were more likely to live and work with other members of Israeli society who were less religious than themselves. One physician who was the director of a hospice and was an Orthodox Jew told me of a situation in which an ultra-Orthodox nurse was told that she was required to hold hands with dying patients as part of her job responsibilities. Although there is a religious prohibition against women and men touching, her rabbi gave her special permission to do so, stating that, since it was for the purpose of healing, it was allowed. When he made rounds at Shaare Tzedek Hospital on the sabbath, this doctor was not allowed to write notes in the chart, as there is a prohibition against writing on the sabbath. He resolved this by writing in disappearing ink and, after the sabbath was over, rewriting his notes. (He was asked by the administration to stop this practice, as it gave the appearance to others that he was actually writing.) During the Yom Kippur war in 1973, doctors needed to obtain skin from dead bodies, as they were anticipating having to treat many burn victims. They were able to obtain a ruling from Israel’s chief rabbi, who held that that this was an exception to the general prohibition against cutting or mutilating a dead body. However, the chief rabbi would not publish his opinion for fear of angering the ultra-religious community. Other doctors told me that they interpreted the prohibition against disconnecting a respirator as allowing them either to turn down the volume of air being put out until the person eventually died or to disconnect it “between breaths,” so that one could interpret the action as not really disconnecting it but allow the person to breathe on his or her own and then failing to reconnect it. One doctor who used this latter method told me that at least one rabbinic expert agreed with this interpretation of the law. These cases show that the religious rules are more fluid and subject to interpretation than one would assume at first glance. Although there is a tendency among the most religious to seek out and follow the most strict interpretation of the laws, many people who consider themselves to be quite religious are willing to bend

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or reinterpret these rules, particularly in situations in which to do otherwise would cause great hardship. There are several possible explanations for why some individuals are more wiling to bend the rules while others rigidly adhere to them. Perhaps individuals who have more contact with others outside of their close knit group have more social support for relaxing the rules, whereas those who only associate with others in the ultra-Orthodox community are under greater social pressure to conform to the rules. Perhaps physicians who regularly witness the great hardship caused by such strict adherence to the rules may be more motivated to look for solutions that will ease the pain and suffering of the families of those they treat. As my sampling is too small to draw any definite conclusions, these questions will have to be answered by further research. Hospitals tend to maintain different standards and rules for whether religious rules will be followed by the hospital staff. Furthermore, there does not seem to be uniformity in the hospital’s own rules on problems that regularly occur. Although the more religious hospital tended to follow the religious rules more often than the university hospital, neither hospital had any written policy or guidelines, which sometimes gave the doctors greater authority to follow the rules with which they felt most comfortable. This authority was sometimes maintained by failing to provide the families with adequate information to question or contradict the doctors. For example, one nurse at the religious hospital told me of a case in which a patient of a non-religious family was in a coma on a respirator for a long time. Although she assumed that the patient was probably brain dead, the doctors did not perform an EEG or other tests necessary to determine brain death, nor did they discuss his condition with the family. They simply maintained the patient on the respirator until his heart stopped. It would have been difficult for the family to complain, since they were never told the precise condition of the patient. A physician in the less religious hospital told me that, since he considered a patient to be dead when brain death was declared, he would not discuss the patient’s condition with a family, even if they were ultra-religious and he knew that they may feel obligated to wait until the patient’s heart stopped before removing the patient from a respirator. He told me that he would not discuss brain versus heart death with the family. Rather, he would simply announce to the family that the patient had died and that they were removing him or her from the respirator. (He did admit to me that this would be more difficult if the family were always present, hovering over the patient and asking questions.) Other doctors at this hospital disagreed and told me that they would abide by the wishes of the family, even if they disagreed. Neither hospital had written guidelines or rules for such problems as when to disconnect a respirator, when to declare death, and when to issue do-not-resuscitate orders. When I asked doctors at both hospitals what the policies were, I often received vague answers. For instance, I asked the doctors at the religious hospital whether the hospital went by brain death or heart stoppage in declaring death. One doctor told me that when the heart stopped, the brain would also stop. Another doctor told me that the hospital did not have a brain death committee, and nobody had ever formally agreed what criteria they would use. At the university hospital, several doctors, including the director of the hospital, told me that the hospital’s policy was that they went by brain death in determining when a patient was dead. However, the hospital had no written policy, and several doctors told me that they


would not go against the wishes of a family, especially if the family were religious and did not want to disconnect a respirator until the patient’s heart stopped. Other doctors disagreed and said they would simply pull the plug once a patient was brain dead. In fact, I observed a case at the university hospital in which two doctors on the same case disagreed about whether or not to disconnect a patient who had been declared brain dead but whose ultra-religious family wanted to continue to maintain her on the respirator. This interesting dynamic involving relations between those with authority in forming rules and policies that affect behavior will be discussed more fully in the final chapter. The question arises as to why there are no written policies on these important issues that continuously come up in the hospital setting. The head of the university hospital told me that he was afraid of offending the ultra-religious by having a written policy that favored brain death. He said that he was concerned that these families would refuse to be treated at his hospital. It is also possible that he was concerned that they would try to apply political pressure to influence hospital policy in their favor. Another possible explanation is that there may be disagreement among the physicians and hospital staff as to which policies should be followed. Both the university and the religious hospital had religious and non-religious physicians on staff. While the more secular doctors might be inclined to follow medical practices that are commonly used in other Western countries, the more religious doctors might refuse to violate any closely held religious beliefs. Thus, it may have been too difficult at both hospitals to reach a consensus that allowed the administration to establish set policies. Rather, they continued to allow these situations to be decided on a case-by-case basis. This will be discussed more fully in the final chapter. The relationship between the doctors and the rabbis, or religious experts, seems to be somewhat ambivalent. Oftentimes, the physician may be upset with a rabbi for interfering in the decision making process. However, the doctor will rarely go against the dictates of the rabbi. On the other hand, family members who do not want to have to make a decision or who do not want to be bound by religious rules may rely on the doctor for a religious ruling and/or to make the final decision in the case. Thus, there are no clear rules for when a rabbi is called in to make a medical decision or who should decide between the doctor and the religious expert. I observed and was told about several cases in which a patient in an ultra-religious family was declared brain dead, but after consulting with a rabbi the family would not agree to allow the doctor to remove the patient from the respirator until his or her heart stopped. Although there were often heated debates among the doctors as to whether or not the patient should be maintained, I did not observe or hear of a single case in which the doctors went against a ruling by a rabbi. In one case, even after the brain death committee declared a patient brain dead and the hospital administration was brought in to resolve the situation, the family’s request to continue to maintain the patient was respected. Thus, in situations in which the family actually obtains a rabbinic opinion, the doctors are extremely hesitant to go against the religious ruling. In another case, a rabbi advised a woman against having a gynecological procedure, even though it was medically necessary and failure to do it could have caused her harm. In that case, although the physician was quite angry with the rabbi

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giving what she felt was irresponsible advice based on a lack of understanding of the medical complications involved, the doctor could not force the patient to go against the rabbi’s advice and have the procedure. Thus, she was bound by the advice given by the rabbi. One way that physicians may avoid having a rabbi make a ruling on their cases is by providing incomplete information. In this way, the religious issue is never raised and the family does not actively look for a rabbinic ruling to help them decide what to do. For instance, a doctor may not discuss the issue of whether or not a do-not- resuscitate order should be considered. Instead, he may simply decide, by himself or with his colleagues, that the situation is futile and a do-not-resuscitate order is necessary. I was also told by more than one physician of cases where the doctor simply told the family that the patient died and without discussing whether they were using the heart or the brain as their criterion. Oftentimes it is the family who does not want to consult a rabbi for fear that they will be bound by rules they do not want to follow. In these cases, the family members may allow themselves to rely on the advice of the doctor in making medical decisions. Although these individuals may be quite religious, many of them do not like having to make these end-of-life decisions for loved ones and would rather have the doctor decide for them. Several of them told me that as long as the doctor was perceived to be religious they could rely on him not to violate any religious rules. Even in the Bronstein case, where observing religious rules was so important to them, Chaya and Shoshi both told me that since the doctor was religious himself they assumed that he would not disconnect the respirator before it was allowed religiously. They did not intend to seek a ruling from a rabbi and then tell the doctor what they wanted. Rather, they preferred to leave the matter in the hands of the doctor. Had the doctor not been wearing a kippah (yarmulke), they might have been less trusting of him. Thus, despite the fact that I knew of several doctors who considered themselves to be religious yet went by the brain death criteria in determining the time of death, Chaya and Shoshi planned to allow the doctor to make the final decision for their father. There is a hospital rabbi; however, he is rarely, if ever, consulted on end-of-life decisions. Members of an ultra-religious family such as the Bronsteins would consult only their family rabbi if they wanted religious guidance rather than rely on a strange rabbi with whom they had no relationship. Less religious families would not be inclined to seek the advice of a rabbi. The only time I saw a rabbi brought in on a case was in the case of Ronit (discussed in chapter VII), in which the rabbi’s presence was requested by a judge who was brought in to make a legal ruling. Lastly, the question arises as to why the ultra-Orthodox seem to have such a strong influence on the less religious in making these life-and-death decisions. Why are the less religious so hesitant to violate or go against these strict religious standards in making difficult medical decisions? As will be discussed in later chapters, many non-religious Israelis have ambivalent and even contradictory feelings about these religious rules. Although they seem to resent the control that this small minority of citizens exercises in daily life, they also express positive feelings about the value of Jewish laws and principles. One member of Israel’s Knesset, or parliament, told me that the Sephardic Jewish Israelis felt particularly ambivalent about going against the religious rules.


She recounted an incident when she was a member of the Knesset in which they were voting on a bill regarding who is a Jew. Many ultra-Orthodox were upset with the bill and did not want it to pass. Rather than having to vote against their ultra-Orthodox colleagues, several Sephardic members of the Knesset actually hid in the bathroom to avoid having to cast their vote. This shows the depth of their their feelings regarding their ambivalence over the religious and their hesitation against going against religious precepts. This ambivalent attitude toward the ultra-religious is not limited to members of the Sephardic Jewish community. I recall an incident in the non-religious, predominantly Ashkenazic Jewish neighborhood where I lived that exemplified this ambivalence. A vote was held among the members of a local Conservative synagogue to decide the issue of whether to modernize certain ritual procedures, such as allowing women to read from the Torah. Although the overwhelming majority of congregants voted to update the rituals, they agreed to compromise and retain most of the old traditional interpretations of the rules. When I asked one congregant why they agreed to this, she told me that they did not want to offend this small minority of their members and cause them to leave the synagogue. They therefore agreed to allow them to continue to exert their influence, even though the vast majority of members disagreed with them. Many Israelis seem to feel that Orthodox Judaism is the most authentic form of Judaism. Even those who do not regularly attend religious services define the Orthodox synagogue as the one they do not attend. Furthermore, it is important to them that the Jewish character of their society be maintained; and, although they may resent the control that the religious have in some areas of their lives, they believe that public life should reflect Jewish and Orthodox tradition (Benavides,, 1989:126-29; Liebman, 1997:39-48). Many of my informants echoed these ambivalent sentiments. In response to questions about their feelings toward the ultra-Orthodox and the control they exercise over people’s lives in Israel, informants often provided ambivalent responses. One informant stated, “some of it (Jewish law) makes sense. Religious and moral things go together. . . [but] there is a big problem in Israel of the religious influence. Religion should be separate from government.” Another informant told me, “I am influenced by religion, even though I’m not religious. Judaism says don’t take a life, there’s always hope. . . [but] the secular are resentful of the religious. It’s a tug of war. I think religion and state should be separate. It’s disastrous to comingle them. It’s allowing moral power over life and death issues.” These informants’ responses show the inconsistent feelings of the non-religious toward the religious. As will also be discussed in later cases, the lack of secular rules to help guide these decisions, such as the lack of hospital guidelines and policies, causes some individuals to seek guidance from the religious, who appear to have clear and unambiguous rules for these difficult problems. Thus, although the religious rules appear to leave little room for compromise or negotiation, they seem to provide answers that people are seeking and cannot find elsewhere. As will be seen, some individuals are more likely to turn to the religious rules when seeking solutions to their most difficult problems. The degree to which each person is guided or influenced by these rules depends upon several factors, including the understandings

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of the particular individual, their relations with others involved in the decision-making process and how the social structure affects the decision-making process.

CHAPTER FOUR

THE CASE OF AHARONAt What Point is a Life Worth Saving?

Aharon Golan, a forty-three-year-old man, kissed his wife good-bye one morning and went to work. He never came home. He never saw the get well card with the yellow flower that his twelve-year-old daughter made for him, nor the faces of the three younger children who would now grow up without a father. Nor would he see the tears of the young doctor who had to be pulled away from his body when she could not stop herself from trying in vain to prevent his inevitable death. Instead, his heart stopped, and he simply ceased to exist. Aharon Golan worked as a social worker for the prison services. He left for work at 6:15 a.m. Two hours later, he was riding in the car with his boss when his boss suddenly noticed that Aharon had passed out and was slumped over in his seat. He rushed him to the emergency room at Hadassah Hospital, Mt. Scopus, a teaching hospital, where CPR was performed at the door of the emergency room. It was a long and difficult resuscitation in that his heart kept going into fibrillation and they could not get him stabilized, which meant that his chances of recovery were quite poor. They also knew that his brain had been deprived of oxygen for about seven minutes prior to entering the hospital; thus, they were fairly certain that he had suffered extensive brain damage. Nevertheless, they were able to revive him, and he was admitted to the hospital, in a coma. Over the next two weeks, Aharon remained in a coma, and his condition did not improve. In fact, his heart went into fibrillation several times, especially in the first few days of his hospitalization, and he needed to be resuscitated. This was an indication that he had an extremely poor prognosis. After he had been in the hospital two weeks, other problems developed. His kidneys started to fail, and he was given dialysis. Shortly thereafter, his leg needed to be amputated. He was unable to breathe on his own and had to be kept on a respirator. All of the doctors admitted that Aharon’s prognosis was extremely poor. Their description of his chances of recovery, with or without brain function, varied from 1-2% to 1 in 5000 to virtually nonexistent. Dr. Klein, who was the chief of intensive care at the main branch of Hadassah Hospital, was called in as a consultant by the family. Dr. Klein was the neighbor of Aharon’s father’s sister-in-law and was asked to do a favor for the family and assess the situation. He examined Mr. Golan and agreed that his prognosis was extremely poor. Aharon’s condition continued to deteriorate, and he became septic. However, some of the doctors felt that because he was so young and had been in such good health prior to his hospitalization, he could continue to live. Despite his extremely poor condition and practically nonexistent chances of recovery, Aharon seemed to engender strong emotional attachments from several of the doctors and staff members who had never before met him. Dr. Mizan, his initial primary care physician in intensive care, told me that she became exhausted emotionally from treating him and developed a strong attachment to him and his



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family. She felt that he was a young person with young children and that he and his wife were people with whom she could have been friends. Similarly, Margo, the nurse who treated him in intensive care, described to me how she became so closely connected with Aharon and his family that she had to back off and ask to be taken off his case. Hebron, the doctor/intern who was called in when Aharon died, had never met Aharon or his family before the night of his death. Yet, when she saw him dying, she could not bring herself to allow him to slip away and insisted on trying to revive him. She finally had to be taken out of the room in tears and told that there was nothing further she could do for him. On the night Aharon died, Dr. Hebron was called in by the nurses and told that he was having trouble breathing and that his heart was going into bradycardia. She described it as a rhythm of someone who is about to die. There was a do-not-resuscitate order on the patient, to which the family had consented. However, she told the attending physician that she did not feel that she could sit there and watch him die without trying to help him. The attending doctor knew that there was nothing she could do to revive him, but he told her to go ahead and do what she felt she had to do. She went ahead and gave him atropine and adrenaline in a futile effort to revive him, but nothing helped. Finally, the attending doctor went in and told her that she had done all she could do and that she needed to let him go. At that point, she was in tears and quite upset. She felt that it was too hard for her to sit back and watch such a young person just die, even though she knew that she there was nothing she could do to save him. The attending physician sat down with her and calmed her down. Aharon Golan’s heart stopped, and he was finally pronounced dead, approximately three weeks after he had first entered the hospital. There was much disagreement among the various parties as to how long Aharon’s life should be prolonged and at what point, if ever, they should discontinue his medical treatment. Talia, Aharon’s wife, did not want to give up when he was first admitted to the hospital. She is a nurse and realized the severity of his situation; yet she felt that he was young, previously healthy, and had four young children. She wanted to give him every possible chance to recover, no matter how hopeless the situation seemed. She also told me that when her children will someday ask her what happened to their father she will be able to tell them that she did everything possible to save him. Although some of the doctors suggested that they give up on him, she told them that she wanted them to treat him aggressively and give him every chance to recover. She encouraged them to do dialysis and amputate his leg. After he had been in the hospital for two weeks and showed no signs of improvement, Talia began to realize that he was not going to recover. She slowly started to change her mind and suggest that they discontinue treating him aggressively. This change occurred after all of the doctors started telling her that there was no chance that he would recover. She also realized that he had suffered extensive brain damage and that, even if he were to awake from the coma, he would still be severely impaired. Talia told me that she tried hard to do what Aharon would have wanted her to do. They had discussed this topic a few months earlier when her grandmother was dying in the hospital. Aharon told her at that time that he saw no point in maintaining life beyond a certain point. There was also an article in the newspaper about a man who

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was paralyzed from the neck down. Aharon had told her that he thought it would be terrible to live like that. Talia was concerned that her husband would remain in a coma for years. She said that she would “go crazy” if that happened. To her, it was like living without a life and would make it very difficult to try to rehabilitate herself and her children, trying to explain to them that he still was, but was not, a father/husband. After he died, she felt that it was difficult and she missed him, but it was an obvious situation that she could explain to the children. She also told me that it was very difficult to see him in the hospital lying in a coma. She no longer felt that he was human. If he had remained in that condition for years, she felt that the memory of him from before would fade, that her memories of him would be of his being in a coma rather than remembering the good times they had together. Although all of the doctors with whom I spoke agreed that Mr. Golan’s chances of recovery were practically nonexistent, they disagreed about whether, and how aggressively, they should continue to treat him. Mizan, who was still a resident at the time, was his main treating physician in intensive care. She talked about how emotionally exhausting it was for her to care of Aharon and how much she felt for the family. Even though she realized that he had virtually no chance of recovery, she did not feel that they should have stopped treating him. She told me that even if there were one chance in a hundred for him to recover, they should continue to treat him, as it was only time and money being spent. She felt that we look too hard for logical reasons to let people die. There are many things that doctors do when treating a patient that may be futile, but they still try it. She said that in Israel they are less materialistic, so the issue of economic costs of keeping people on a respirator does not enter into the decision as much. She also felt that, since it is a small country, everyone seems to know everyone else. The person on whom you are working may turn out to be a distant relative or from a family you know. As to decisions to issue do-not-resuscitate orders, Mizan felt that, although it logically made sense, emotionally it is hard to say that you cannot help a patient. She thinks that oftentimes they will say that a person is old and has no chance of a good life or that his or her condition is futile, but she feels that this just makes it easier for them to issue a do-not-resuscitate order on a patient. As to whether Dr. Mizan would be more likely to issue a do-not-resuscitate order on a patient who was suffering, she said that it would make a difference to her and that she would want to issue a do-not-resuscitate order on a patient so as not to prolong his or her suffering. She also felt that, in such circumstances, she would be more likely to pray for the person to die to stop his or her suffering. (Dr. Mizan described herself as not particularly religious.) As to patients in a persistent vegetative state, where there was no chance of recovery, Dr. Mizan felt that it was up to society, rather than the individual doctors, to decide what to do with such patients. She felt that society did not have the courage to make decisions as to what should be done in these cases. Dr. Greenberg, a cardiologist who was called in to treat Aharon, felt that the doctors should have continued to treat Aharon and that he should not have been given a do-not-resuscitate order. He also agreed with the decision to amputate Aharon’s leg and continue other aggressive treatments. Dr. Greenberg realized that his chances of recovery were quite low, but he did not agree with others that he had

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zero chance of regaining consciousness. He felt that Aharon’s chance of recovery was 1-3%. He also disagreed with others about whether Aharon’s quality of life should have been an issue. Whereas others said that even if he recovered he would have been severely damaged, Dr. Greenberg felt that it was not up to them to decide who should and should not live. He told me that some physicians decide from the beginning that a patient is not worth treating, and he felt that this was a dangerous attitude. He said that a do-not-resuscitate order should be reserved only for very special patients, such as when the doctor has done everything and they are 100% sure that the patient is beyond treatment, such as someone with end stage heart failure, end stage metastatic cance, or kidney failure, who can no longer be helped with dialysis. As to Mr. Golan, Dr. Greenberg did not think that he should have been placed on do-not-resuscitate status when he was as he was not sick enough at that point. Earlier in his hospitalization, Dr. Greenberg called in an orthopedist to amputate Aharon’s leg. Many of the younger doctors were upset with him, but he felt that they owed Aharon a chance to recover. Dr. Greenberg told me that when his mother died, he felt that they had issued a do-not-resuscitate order on her too soon and that they allowed her to die earlier than she should have. She was seventy-eight-years-old and had malignant cancer, but she asked to receive full treatment for her cancer. She was given chemotherapy, but she developed serious side effects. Later, when she became worse, the doctors issued a do-not-resuscitate order for her. She was eventually brought to a hospice and died. Dr. Greenberg felt that she was not ready to give up and could have lived another year if they had not stopped treating her. Dr. Mizan, the doctor assigned to treat Aharon when he was transferred to internal medicine, felt that it was obvious that Aharon should have been given a do-not-resuscitate order and that the only reason it was not done sooner was that he was so young and previously healthy. However, he had also suffered severe anoxic brain damage and was not going to recover. By the time he was brought to internal medicine, Dr. Mizan was certain that he was going to die, as he was septic and his kidney and liver were not functioning. Dr. Meron felt that Aharon should have been placed on do-not-resuscitate status much sooner than he was, perhaps two to three days after he was brought to the hospital and they saw that he was not showing any signs of neurological improvement. He was surprised that they treated him so aggressively in intensive care and felt that they were much too aggressive. He also said that even if they had tried to fully resuscitate him in the end, it would have been futile, as he was septic and anoxic and he could not have been revived. Dr. Klein, who was brought in by the family as a consultant, also agreed that it was pointless to continue to treat Aharon. He felt that, with a patient in Aharon’s condition, “you need to bite the bullet and agree to a do-not-resuscitate order .” He also did not feel that they should have done dialysis or amputate his leg. Dr. Klein is an Orthodox Jew and is a lawyer. He did not feel that under Jewish law or secular Israeli law, the doctors were obligated to treat him. Many other doctors agreed that Aharon should not have been treated as aggressively as he was. The neurologist called in to assess Aharon’s mental status said that he had suffered extensive, irreversible brain damage and had no hope of


recovery. The nephrologist called in to authorize dialysis at first tried to refuse to treat him, as he felt that it was a hopeless case. He only authorized it after the intensive care doctor/s insisted on it. Similarly, the orthopedist called in to perform the leg amputation did not want to perform the surgery but agreed to do it only after the intensive care doctor/s insisted on it. Other doctors were more ambivalent about how Aharon should have been treated. Dr. Kaplan, another cardiologist who treated Aharon in intensive care, described Aharon’s chance of recovery as one in 5,000. However, he felt that it is a contradiction to have someone in an intensive care unit and issue a do-not-resuscitate order on him or her, as the purpose of intensive care is to intensively treat patients. He is not against do-not-resuscitate orders in principle but feels that, once that decision is made, the person should be transferred out of intensive care. In Aharon’s case, he felt that they should have treated him as aggressively as they did so as not to deprive him of any chance of recovery, no matter how remote. However, he felt that it would have been legitimate to say that his condition was futile had the family requested not to treat him. Dr. Hebron, the intern who could not bring herself to allow Aharon to die, agreed in principle that some patients should be given do-not-resuscitate orders. She felt that it is appropriate when resuscitation is futile, such as when a patient has metastatic cancer or is an older, debilitated person with sepsis. She also agreed that when it is medically futile and the patient or family requests that there be no resuscitation, a do-not-resuscitate order is appropriate. She felt that quality of life issues were more difficult to decide as it is difficult to decide for someone else whether his or her life is worthwhile. She felt that there has to be a balance. Some doctors are too quick to issue a do-not-resuscitate order, while others go to the other extreme. As to Aharon’s case, she felt that it was medically futile to try to revive him. She disagreed with Dr. Greenberg that he should not have been given a do-not-resuscitate order. However, when it came time to carry out the do-not-resuscitate order, she was unable to do so. She told me that although she agreed that he should have been given the do-not-resuscitate order, as long as he was there, she felt that there was hope for the family. She felt that it was better for everyone that he is now dead because there was no hope for him. However, emotionally, she could not sit there and watch him die without trying to help. Dr. Hebron could not say what made her so emotional about this particular patient, except that he seemed so young and it was easy to identify with the him and the family. As we discussed his case, Dr. Hebron began to remember him and again began to cry. She was quite upset about his death and her inability to prevent it, as well as how difficult it was for his family. Thus, although she agreed in principle that his condition was futile and that he should have been placed on do-not-resuscitate status, she could not, for emotional reasons, bring herself to carry out the do-not-resuscitate orders. As to who should make the medical decisions regarding the patient’s care, particularly the decision as to whether or not to issue a do-not-resuscitate order, most of the people involved seemed to agree that both the family and the doctors should have some input, although there was much ambivalence and a general lack of clarity over who actually had the authority to make the final decision. Talia seemed to feel that the doctors were agreeing to go along with what the family wanted in

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continuing to treat him. However, she was not sure if the family were to continue to insist that they treat him aggressively, long after it was clearly futile from a medical standpoint, whether the physicians would continue to allow the family to make the decisions. Talia felt that the doctors wanted her family to decide not to treat Aharon, but they agreed to give him a chance. If he had been seventy-five or eighty years old and the family were less involved, she did not think they would have continued to treat him. She believed that since Aharon was young and the family members were not “acting hysterical,” the doctors accepted their opinion. Talia had been appointed apotropos, or legal guardian for the purpose of making certain medical decisions, for Aharon, to make medical decisions for him. But this did not seem to include the decision of whether or not to issue a do-not-resuscitate order for him. Rather, she made such decisions as whether or not to amputate his leg or perform a tracheotomy—decisions as to what procedures to perform on his body. As to which family members were involved in making the medical decisions for Aharon, Talia said that she and her father-in-law seemed to be in complete agreement as to what should be done. Although she was technically appointed as the apotropos the family seemed to consult with each other and were in agreement as to what should be done. Aharon’s two brothers and sister were present and helping to decide, but his mother did not want to be part of the discussion. Talia also felt that she did not like being asked to make these life-and-death decisions for her husband and said it was much too hard for her. At one point, her father advised her that it was the doctors who should be making the decisions rather than she. She agreed with him but felt obligated to be a part of the decision. She also struggled with what she would tell her children in the future and did not want them to feel that she had not done her best to try to save their father. Dr. Mizan felt that doctors alone should decide on issues of medical futility, but when the issue is one of the quality of life the family should be consulted. She felt that the family could have ulterior motives whereas the doctors were more objective. Family members could be thinking more about themselves, they could be tired of caring for the patient or feel that he or she had become a financial burden. They could also have feelings of guilt and not let the patient go. In this case, however, Dr. Mizan consulted at length with the family and allowed them to have great input into the decision of whether or not to issue a do-not-resuscitate order, long after most of the doctors agreed that his case was medically futile. Similarly, Dr. Greenberg felt that the family and the doctor should decide these issues together, but the family alone should not decide, since they could have ulterior motives. Dr. Meron felt that if it is medically futile to treat a patient a family does not need to be consulted. In this case, he would not have agreed to resuscitate Aharon, even if his wife had wanted him to do so. However, he would have discussed it with her before he made the decision. As to which doctors should make a decision to issue a do-not-resuscitate order, Dr. Meron said that it was discussed in the hospital corridors by several doctors. He and a senior physician made a decision to place him on do-not-resuscitate status when he arrived in internal medicine, but a separate decision had already been reached in intensive care before he was transferred.


Religious issues were not raised by any of the parties in this case, as most of the individuals were not that religious. Talia told me that although she lives in a religious area, she herself is not religious and does not feel that it had any relevance to her in making decisions for Aharon. Many of her neighbors are quite religious, but they did not make suggestions about consulting a rabbi or seeking religious advice because they know that she is not religious. Talia felt very resentful of people who told her that we cannot know why God does things, so we have to accept it. These religious explanations do not make sense to her. After Aharon died, she was struggling with why it happened. She understood how she could have done something for which she should be punished but did not understand why this was happening to four innocent children. Dr. Mizan also told me that she is not religious, so religious issues do not really come up for her in making these types of medical decisions. She has dealt with religious families before and knows that they will talk to their rabbis before making a medical decision. She felt that, at times, rabbis took irresponsible risks and gave medical advice without understanding what they were doing. She told me of one incident in which a woman was carrying a dead fetus and needed to have a D&C to remove it, but the rabbi told her that the procedure was forbidden, even though this was potentially life threatening for the woman. Aviva, a social worker who counseled Talia during her husband’s hospitalization, told me that Talia was not that religious, even though she lived in a religious area. She told me that, in her experience, religious individuals will consult with a rabbi in order to get a halachic (religious) ruling. She has known of cases in which the rabbis gave advice that was medically dangerous or went against the doctor’s advice. They can also go against a decision to issue a do-not-resuscitate order on a patient whose medical condition is futile and insist that everything be done for him or her. She further told me that rabbis in Israel do not counsel or talk to families. Rather, they issue rulings as to what the family is or is not allowed to do according to religious law.

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Analysis

This case exemplifies the lack of clarity as to who has the authority to make the difficult end-of-life decisions and what rules should be followed. As was seen in the previous case of Sarah, there are no written or clearly understood criteria for when medical treatment should be terminated or whether a patient should be given a do-not-resuscitate order. It is not clear what role, if any, the family should play in the decision-making process, nor are there any standards as to which doctors or combination of doctors should decide nor what role the nurse should play in the process. Even once a decision has been reached, there do not seem to be any sanctions or repercussions for disobeying the decision. Several factors that can account for this ambiguity and lack of clarity will be discussed below. Nobody could state with certainty who, between the family and the doctors, was supposed to make the final decisions on whether medical treatment for Aharon should be terminated. Rather, there seemed to be a sliding scale that was affected by several factors: the futility of the situation, how vocal and/or articulate the family was, how the doctors felt about the particular patient and which doctors were assigned to treat and make decisions about the patient. Many physicians whom I interviewed, both on this case and others, stated that when the situation is futile, they will not ask the family for input; whereas, if the situation involves quality of life issues, they are more likely to consult family members. However, this case shows that it is difficult to separate these two situations. Although some of the doctors clearly stated that Aharon’s condition was futile and that he had virtually no chance of recovery, others, such as Dr. Greenberg, defined futility as applying to one whom the doctors can state with a hundred percent certainty will never recover. Even Dr. Mizan, who admitted that Aharon would never recover, still consulted with the family at length. Just as in Sarah’s case, some of the doctors acceded to the wishes of the family while others felt that their medical judgment should supersede the family’s request. Aharon’s wife Talia seemed to feel that the doctors were listening to her but was not sure that they would continue to take input from her in the future. Some doctors, such as the orthopedist who did not want to perform the leg amputation, did not feel that he needed to consult with Talia, even though she had been appointed as an apotropos, which gave her the legal authority to make such decisions on behalf of her husband. Similarly, in Sarah’s case, the doctor who decided to place a feeding tube in Sarah against the wishes of her daughter (who was ostensibly echoing the patient’s own wishes) felt that her medical judgment should take precedence over the stated objections of the family. Doctors gave me several reasons why they sometimes did not consult the families of the patients about end-of-life decisions. The most common reason given was that family members did not want to have to make such decisions and would have to live with the guilt of having agreed to “give up” on their relatives. In fact, I found that the vast majority of family members whom I interviewed did experience feelings of guilt and did not want to make these end-of-life decisions. As one woman put it, “I didn’t want to have to ‘kill’ my husband.”


Another reason frequently given by doctors for not including the family in the decision-making process was that the family may have ulterior motives, such as feeling that the patient was a financial burden or harboring hostile feelings toward the patient. However, I often observed doctors using this reasoning in cases involving extremely loving and caring families who frequently stayed by the patient’s bedside every day for months on end, families who continued to comfort and care for the patient long after the doctors had given up hope. Just as there are no definitive rules about whether the family or the doctor should make decisions in these types of cases, there are also no clearly defined standards as to which doctors, or combination of doctors, should make these end-of-life medical decisions. Just as in Sarah’s case, in which one doctor acceded to the wishes of Sarah’s daughter and did not insert a feeding tube into Sarah, while the next doctor assigned to treat her disagreed and proceeded to do the opposite, so too in Aharon’s case the physicians disagreed about what should be done and who should decide. When the primary physician called in an orthopedist to amputate Aharon’s leg, the orthopedist initially refused. Only after much disagreement and pressure from the primary care physicians and input from the family did he reluctantly agree to perform the procedure. Even after the majority of doctors finally agreed to a do-not-resuscitate order for Aharon and wrote it in his chart, the resident on call, with the consent of her supervisor, proceeded to ignore the order and attempt to resuscitate him. One cannot even state with certainty that there is a clear hierarchy between the doctors and the nurses in making these decisions. Although it generally appears that the doctors’ orders take precedence over the nurses’ there were times when the nurses could intervene and disagree with the doctors. This seemed to be more likely to happen when the nurse intervened for what she perceived to be a gross injustice and was quite persistent in her viewpoint. As we saw in Sarah’s case, although the nurse, Malka, agreed to attempt to insert a feeding tube into Sarah, she set a limit on the doctor and told the doctor that if she was unable to perform the procedure the first time, she would refuse to make a second attempt. In another case reported to me by a nurse at the religious hospital, she was once able to intervene when a physician attempted to resuscitate a terminal cancer patient. In that case, the incident happened at night and the patient’s primary physician had failed to leave a do-not-resuscitate order for the patient. She was quite insistent that it would be an injustice to the patient to resuscitate him, and the doctor agreed to let the patient die. The reason for this ambiguity or seeming randomness over who should have input into the decision making process involves a combination of factors, including feelings of guilt by the family, the strong religious influence in Israel, and the lack of rules, which gives physicians greater authority to decide when to consult the family about such decisions. This also seems to allow those with the strongest feelings about a particular patient or situation to have the greatest input into deciding what type of treatment the patient should receive. As discussed in the case of Sarah, the lack of rountinization in Israel, as well as the disagreement between the religious and non-religious, are the primary reasons why there are no set rules to govern these situations.

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This case further demonstrates that there is great ambiguity and disagreement over what criteria should be used in making end-of-life decisions. Dr. Greenberg stated that he would not issue a do-not-resuscitate order unless he was 100% certain that there was nothing further they could do to help the patient. He admitted that Aharon had an extremely poor chance of recovery; yet, he felt that they had an obligation to continue to treat him. Dr. Meron felt that a do-not-resuscitate order should have been given two or three days after Aharon was hospitalized, especially since he had suffered anoxic brain damage. Dr. Mizan stated that even though she realized he had virtually no chance of recovery, she did not think that they should discontinue treatment, as it was only time and money being spent and it is hard to say emotionally that one can no longer help a patient. These same issues and disagreements arose in Sarah’s case when the two physicians disagreed as to what constituted “heroic” measures in deciding whether or not to insert a feeding tube into Sarah hours before she died. One would assume that in any hospital, there would be differences of opinion on when it is appropriate to terminate medical treatment and/or issue a do-not-resuscitate order. These are not easy decisions and oftentimes they require subtle judgment calls. Although it seems in this particular case that the diversity of opinions on these issues seem rather extreme, one would expect at least some disagreement among doctors and medical personnel in any case. The question here is why there are no hospital guidelines or criteria that would help to provide some uniformity to the decision making process. It is clear from my discussions with various doctors and hospital administrators that there is a reluctance, or fear, to establish definite guidelines. One doctor told me that he proposed to the head of Hadassah hospital that they set up a conference to discuss do-not-resuscitate policies. He suggested that they invite various speakers, including former Israel Supreme Court Justice Elon, who had written the lead legal opinion on the subject, along with other knowledgeable members of the community, to help them formulate some policy guidelines. The head of the hospital would not agree to allow such a conference. The head of one hospital told me that they could not establish written policies because there were “too many cultural and religious differences” and they “couldn’t write a policy that everyone would agree with.” This seems to imply, at least in Israel, that there is strong disagreement between the religious and the non-religious on this subject and that neither would agree to compromise or accede to the other’s suggestions. For instance, one doctor told me that, if they were to issue hospital guidelines favorable to the less religious doctors, the ultra-religious might refuse to come to the hospital and the religious doctors would simply ignore the hospital policies, claiming that it violated their religious tenets. Even in situations in which there are definite policies, doctors still do not feel compelled to follow them. For instance, the head of the hospital told me that hospital policy states that once a patient is declared to be brain dead by the brain death committee, the physician can remove him or her from the respirator, regardless of whether or not the family agrees. However, I observed one case in which an ultra-religious patient was declared brain dead by the appropriate committee and the family did not want her disconnected. Although the neurologist on the case argued that the hospital was maintaining a dead body and the respirator


should be disconnected, the main treating physician would not go against the wishes of the family. The patient was kept on the respirator for five more days until her heart stopped. This was not an isolated case. I was told of one other case in the same hospital in which a patient was declared brain dead, but the family did not want him removed from the respirator. Even after the hospital administration was brought in on the case, the family was allowed to persevere and the patient was continued on the respirator. This again shows how, even in situations in which there ostensibly are set rules, those with the strongest feelings about a particular patient are allowed to make the decisions regarding his or her medical treatment, even if it means that the previously agreed-upon rules are violated. The result of this failure to establish definite guidelines is that decisions are made on a case-by-case basis in a rather haphazard way, depending upon which doctor is assigned to the patient, how vocal the family is, and a variety of other factors. As can be seen in this case, each time a decision had to be made regarding Aharon’s care, a heated discussion ensued, with the outcome dependent upon who was involved in the particular decision and how insistent they were in having their way. The initial questions I raised in this case are at what point is a life worth saving and how is such a determination made. Where does one draw the line between maintaining life at all costs and needlessly prolonging it? This patient provoked much debate and discussion about how much care is appropriate and when, if ever, it is time to stop and allow a patient to die. Strong feelings and emotions were brought out on all sides of the issue. The vast majority of doctors admitted that Aharon had virtually no chance of recovery and that even if he were to awake from his coma, he had suffered severe, irreversible brain damage. Yet, many of the doctors still felt that he should be treated aggressively. The question is why, and what criteria they used to decide to continue to treat him. Was it because he was young and healthy prior to his hospitalization? Was it because they wanted either to appease the family or give them time to accept his inevitable death? Or were there other factors that influenced these doctors? Why were some of the doctors more willing to terminate treatment than others, and why were others never willing to let go of this patient, no matter how hopeless the situation had become? Three doctors emerged who seemed the least willing to terminate treatment and agree to a do-not-resuscitate order: Dr. Mizan, Dr. Greenberg and Dr. Hebron. Dr. Mizan was initially the main treating physician on Aharon’s case. She was a young doctor still in her residency. She talked about how emotionally exhausting this case was for her and how much she felt for the family. She admitted to me that she realized that Aharon’s situation was hopeless, yet she could not bring herself to let him go. She told me that “we look too hard for logical reasons to let people die.” She also found it hard to tell the family that there was nothing more they could do for Aharon. Although she did not consider herself to be religious, her reasons seemed to parallel the thinking of some of the more religious individuals I interviewed in her belief that one should never give up on life and that one is compelled to fight against death and resist it. She was thus most likely influenced by a combination of factors that included a rather nebulous religious view of death

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as something to resist and an emotional reaction to this previously young, healthy patient with a family with whom she could identify. Dr. Greenberg seemed much more distant emotionally from this case. He is a cardiologist who at times served as Aharon’s primary physician in his role of making decisions as to how aggressively Aharon should be treated. Although he agreed with Mizan that one should not give up on life too quickly, he spoke more in terms of who should decide and by what criteria. He told me that one’s quality of life should not matter in deciding whether or not to treat a patient and that it was not up to them to decide who should live and who should die. He seemed quite unemotional about this particular patient, yet he was quite adamant that they should not have given up on him. Dr. Greenberg went into much detail with me about his mother’s death and how upset he was that the physicians in her case allowed her to die too soon. Dr. Greenberg also told me that his family was originally from Rumania and that ninety percent of his family had been wiped out in the Holocaust. During the course of my interviews, when I asked people whether they thought the influence of the Holocaust had any relevance to making these end-of-life decisions, many used language similar or identical to that used by Dr. Greenberg. They spoke in terms of the danger of judging who had a right to live and who should die and who had the right to determine whose life was not worth living. Dr. Greenberg’s background, coupled with the specific language he used to describe his reasons for refusing to terminate medical treatment leads me to believe that his personal connection with the Holocaust, coupled with his feelings about his mother’s death, influenced his beliefs. Dr. Hebron had the least contact with Aharon prior to Aharon’s death. She was the resident on duty the night he died. She agreed in theory that a do-not-resuscitate order is appropriate when a patient’s condition is medically futile and the family agrees to it. She also agreed that such an order was appropriate in Aharon’s case. Yet, when she entered Aharon’s room and saw him dying, she could not bring herself to sit back and allow him to die without trying to intervene medically. She told me that she identified with the family because he was so young and she noticed his daughter’s card with a picture of a yellow flower drawn on it. She felt that she could give the family some hope if she were able to keep him alive a few more days. I interviewed her several weeks after his death, and our talk again brought tears to her eyes. I would have to conclude that Dr. Hebron’s reason for wanting to keep this patient alive was based on her emotional reaction. For some reason, she strongly identified with his situation, and this took precedence over her logical understanding that there was nothing she could do to save his life. There does not seem to be a clear pattern of why these three physicians insisted on continuing to treat Aharon. Each had his or her own unique reason, and each seemed to be influenced by his or her own combination of emotional reactions and/or personal experiences. What is interesting to note is that the lack of any set rules or hospital policies allowed these doctors great latitude to exercise their prerogatives and continue to treat Aharon, despite the objections of other doctors who were involved in his care. As discussed in the Bronstein case, the strong influence of the ultra-Orthodox on the less religious in making these life-and-death decisions can be seen here. Just as


Sarah’s daughter was hesitant to speak out against the doctors who inserted a feeding tube into her dying mother against her wishes, so the less religious doctors hesitated in refusing to continue to treat this dying patient. This again shows the ambivalent and contradictory feelings of the nonreligious about the religious rules and mandates in such situations. Lastly, the strong emotional reaction by the doctors and hospital staff is quite striking, and I would assume that this greatly influenced the doctors and nurses in their refusal to allow Aharon to die. The doctors and nurses who had a difficult time accepting his death spoke of their feelings for his family and how they could relate to them as people with whom they could have been friends. They spoke of his youth and of his having four young children. They spoke of how Israel was a small country and of how any patient who entered the hospital could turn out to be a relative. This emotional element of feeling an attachment to patients as if they were a member of one’s family strongly affected the doctors’ abilities or desires to separate the emotional from the logical in making decisions affecting Aharon’s care.

CHAPTER FIVE

THE CASE OF MOSHEWhere does one Draw the Line between Hope and Reality?

Moshe Goshen-Gottstein defied all odds. He suddenly went from being a world-famous scholar to a helpless comatose patient who, according to doctors, had no chance of recovery, only to recuperate fully and return to his previous level of competence. It is a story with a happy ending, one that every family with a comatose member dreams will be their story. Yet the issues raised by his case go beyond the “miracle” of his seeming rebirth to why all those involved in his care continued to hope and to provide him with treatment and attention and affection for months, with little hope of any, let alone a complete, recovery. It is a case whose happy ending does not completely explain the beginning or the middle of this miraculous event involving this incredible man. Moshe could be described as a man who had everything in life that one could hope for. He had a close and intimate relationship with his wife Esther, to whom he had been married for forty years. He had two grown sons who were successful in their own right, and a new grandson who adored him. At fifty-nine years old, he was a world-renowned expert in his field of scholarship and had been invited to teach and lecture throughout the world. Yet his health was not up to what it once had been. He was overweight and suffered from diabetes and high blood pressure. When he started having an increasingly difficult time breathing during physical activity such as walking, his doctors told him that he needed a heart bypass operation. After a particularly difficult evening, Moshe entered the hospital and underwent an operation to correct his heart problems. During the operation, he suffered a heart attack, and the doctors had a difficult time reviving him. He fell into a deep coma, and his doctors did not think he would awake. The doctors also believed that his brain had been without oxygen for long enough to result in irreversible brain damage of some degree. Moshe remained in this comatose state for three months, with little sign of improvement. Almost all of the doctors told Esther and her sons that there was little or no hope of recovery for Moshe. Yet, Esther and her sons continued to take turns staying by Moshe’s side, reading and talking to him, praying with and for him and caring for him until he miraculously awoke from the coma approximately three months later. The Goshen-Gottsteins are a close-knit family who live near one another and keep in close contact with each other. Prior to Moshe’s hospitalization, when Alon, the older son, was studying for his Ph.D. in rabbinic thought, a subject different from but related to his father’s work, he relied heavily on his father for advice. Later, when Moshe awoke from the coma and was brought home from the hospital, Alon and his family moved in with his parents until he was sure that they could manage without him. Jonathan, the younger son, proceeded to take over the cumbersome task of reteaching Moshe basic skills when he returned home after awaking from his coma.



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All family members are practicing modern Orthodox Jews, although they vary somewhat in their approach to religion. Jonathan is a practicing Orthodox Jew in that he follows all of the required rules and rituals, such as keeping kosher and observing the sabbath. However, he is more practical and sees himself as a proponent of scientific method. He has a Ph.D. in experimental psychology. Alon, the older brother, is the more spiritual member of the family. His Ph.D. is in Rabbinic thought and he has also studied other religions as well, particularly the more spiritual aspects of Eastern religions and Hassidic Judaism. Esther, who also has a Ph.D., observes all of the religious laws as well; however, she follows the rules out of a sense of obligation to her family and her community. It is interesting in this family where all members outwardly observe the same rituals and obey the same religious laws that they differ so drastically in their religious beliefs and interpretations of events in religious terms. Alon, the most religious in terms of spirituality and the power of religion, spends several hours daily in prayer and meditation. He was the most optimistic member of the family. Alon had a spiritual guru of Eastern religious origin with whom he regularly consulted and who guided him during the difficult period of his father’s hospitalization, when the doctors were telling the family that Moshe was not going to wake up from his coma. He felt that she was quite advanced spiritually, and he believed in her advice completely. She told him that Moshe was going to awake from the coma; and, despite the uniform pessimism expressed by the physicians, Alon continued to believe in this guru and remain optimistic throughout the ordeal. He never wavered from this steadfast belief. Jonathan sees himself as much less religious and more practical than his brother Alon. Although he follows all of the rules and rituals that are required of an Orthodox Jew, he does so more out of a sense of obligation than for spiritual reasons. Whereas Alon remained optimistic throughout his father’s hospitalization, assured by his guru and his faith in his father’s recovery, Jonathan was more pessimistic and depressed. He did not discount, as did his brother, the reports of the doctors, who repeatedly told the family that Moshe was not going to recover. It is interesting that it was Jonathan who decided to consult a Kabbalist, or Jewish spiritual advisor, as to what they could do to help their father. The Kabbalist told him that they needed to perform a ceremony to have Moshe’s name changed. The reasoning behind this ceremony is that one can confuse God (or the angel of death?) in that when God comes to take Moshe, whom he has decreed should die, Moshe will have had his name changed and God will not take him. Jonathan organized a ceremony wherein about thirty friends, colleagues and relatives met at the Western Wall, considered by many to be the holiest place on earth for Jews. Jonathan then announced that his father’s name was changed to Hezekiah, whose name came from the Hebrew Bible (2 Kings 20). (According to the biblical story, King Hezekiah was very ill and was told by the prophet Isaiah that he was going to die. Hezekiah later spoke to God and repented for his sins. God sent Isaiah back to tell the king that he would live another ten years.) Esther told me that she does not consider herself to be a strong believer or a deeply religious person. Rather, she follows the rituals in order to conform with others in her community and for the sake of her children. For instance, if she did not keep kosher, her children and others would find it difficult to eat in her house. She

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also told me that she is agnostic and does not really believe in heaven or an afterlife. Although Esther does not believe in miracles, she agreed to go along with the name changing ceremony for the sake of her son Jonathan. Whereas her son Alon saw Moshe’s illness as a trial by God and was quite sure that God was going to save Moshe, Esther described herself as much more “practical” and felt that she did not have the “luxury” of such beliefs. Whereas Alon was able to derive some meaning from the experience, Esther saw no purpose to it and thus did not have what she saw as the psychological advantage that allowed Alon to remain optimistic. Esther has no problem with following religious rules with regard to medical treatment, such as when a person may be removed from a respirator. She feels that these rules are well thought out and reasonable. She also feels that most people accede to these religious rules because of social pressure in that it is awkward not to follow certain rituals that everyone else is following, especially those involving death. She gave me an example of a couple in which the wife is not Jewish and the husband is Jewish. Their son was not circumcised. It was a big problem for him when he went to kindergarten in that he looked different from the other boys. Esther also told me that everyone in Israel sits shiva when a relative dies. Sitting shiva (literally seven) is the Jewish custom of sitting at home in mourning for seven days after a close family member dies. Esther said that everyone is paid for time off from work for this period of time and that even the most secular Israelis follow this practice. She feels that that this is proof that Israelis are not as secular as they may seem, especially when it come to issues of death and dying. She also feels that this is a good practice psychologically and that social pressure encourages people to follow this practice. As to who makes the medical decisions, Esther told me that the doctors made most of the decisions without consulting any family members. For example, when the doctors decided to move Moshe from the recovery room to another room where he would receive less individual attention, the family was not consulted. Later, they decided to move him to a chronic care ward without consulting the family. On one occasion, Esther was in the middle of a session with a patient (she is a psychotherapist) and was told that they were going to move her husband in one hour. Although she pleaded with them to wait until she could come there and discuss it with them, they refused. The issue of terminating medical treatment was never discussed by anyone as it was assumed that as long as he was not brain dead they would continue to treat him. Even though the doctors were quite pessimistic about his chances of recovery, they never suggested at any time that his medical treatment be stopped. Esther said that the doctors seem to feel that they know best and that there is no reason to consult family members about a patient’s treatment. She also felt that people were less informed about what was going on and did not understand the medical treatment. According to her, the average Israeli does not ask many questions of the physicians nor understand what kind of treatment their family members are being given. Thus, they are often not in a position to question what the doctors recommend. Esther felt that the doctors and staff were sometimes indifferent to Moshe’s needs and the family’s opinions. She told me that the hospital was sometimes understaffed and would do things more for the convenience of the staff than for the


patient’s well being. For instance, on weekends, there tended to be less staff. Moshe had just become retrained to use the toilet by himself, and it was important for him to continue to do so. But on the weekends, they would put him back in diapers to make it easier for the staff to care for him rather than encourage his independence. Another time, while Moshe was still in a coma, Esther was sitting with Moshe when she noticed that he seemed quite agitated and warm. She told the staff that he had a fever. They disagreed and insisted that they had already checked his temperature. When she insisted that they check him again, they discovered that he did indeed have a high fever and could have died from the infection if it had not been caught. Esther told me that she had to “keep on top of them” all the time to make sure that Moshe was not neglected. Esther was also quite upset that the doctors were so “realistic” with her in telling her that Moshe had no hope of recovery and that it was extremely rare for someone in his condition to awake from a coma. She also felt that their manner of telling her was quite insensitive. She described how one doctor hurriedly spoke to her in a doorway, telling her that her husband had no chance of recovery. She told him that he was taking away all her hope and that she had noticed some positive signs of improvement in her husband, but he continued to insist that she had nothing to hope for. Despite Esther’s dissatisfaction with the doctors’ making various medical decisions for Moshe without consulting his family, she was able to prevail over the objections of the doctors on two occasions on issues involving Moshe’s medical treatment. In one case, a psychiatrist was called in to examine Moshe when he had become quite agitated shortly after awaking from the coma. He recommended that Moshe be given a tranquilizer to calm him down. The family strongly disagreed with this recommendation and told the psychiatrist that they did not want Moshe to be given this drug. The psychiatrist became quite angry with them and said, “I wouldn’t do this to my father” (i.e. allow him to remain so agitated). However, he acceded to their wishes and did not give Moshe the drug. When I asked Esther why the psychiatrist agreed to this, she told me that it may have been because she is a psychologist herself and therefore had professional standing to render an opinion. Esther described one other incident in which a neurologist wanted to perform some tests on Moshe that would have involved sedating him. Esther strongly disagreed with this treatment in that she felt that Moshe was slowly recovering from his coma and she was concerned about allowing the doctor to induce a less alert state of mind. Esther was also quite upset with the neurologist’s attitude in that he was unaware of Moshe’s background prior to examining him. She was also upset that he made her leave the room during his exam. However, he also acceded to Esther’s wishes and agreed not to perform the test on Moshe, although he may also have agreed to this because he did not have an open bed on the neurology ward at the time. Esther did not feel that it was always wrong to allow the doctors to make end-of-life medical decisions. She told me that families can sometimes have ulterior motives, such as concern for their own convenience or dislike or anger towards the patient. She also told me that you “can’t have everyone make his own laws.”

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Six years after Moshe recovered from the coma, he had a heart attack and was rushed to the hospital. He did not survive this second hospitalization. Esther told me that it was extremely difficult for her when, during this hospitalization, the doctors asked her whether she wanted them to remove her husband from the respirator. Despite the fact that she knew that he would not recover and could not be saved, she did not want to have to make this decision, saying, “I didn’t want to have to kill my husband” and “It’s a horrible decision to have to make. It’s like carrying out a death sentence.” Other family members agreed. Tamara, Alon’s wife, told me that the family was anguishing over this decision and were quite relieved when Dr. Fink, a family friend who sometimes treated Moshe, told them that the doctors were going to make the decision. Another doctor who was the father of Esther’s daughter-in-law also spoke with the family about who should make the decisions for Moshe. He told them these decisions were supposed to be made by the doctors and not by close family members, who would find the task of making such decisions too distressful. Esther felt relieved after speaking with him, as she did not want to have to make such decisions herself. Dr. Ennis, the physician in charge of Moshe during his first hospitalization, agreed that the doctors should make these end-of-life decisions. He believed that although the family should be informed of the patient’s condition and consulted about what should be done, the final decision should be made by the doctor. Dr. Ennis felt that it was too difficult for the family to have to make these decisions and could result in feelings of guilt for believing that they had terminated the life of a loved one. On the issue of how long and under what circumstances she felt that Moshe’s life should have been prolonged, Esther told me that she had no models to follow, as his case was unique. She felt that it would have been easier to predict the outcome if he had had cancer or heart disease, since in these types of cases, one knew what to expect at each stage of the disease, how much the person was suffering, how the suffering could be alleviated and the anticipated outcome. In Moshe’s case, the doctors had no answers for them. I asked Esther why, considering the overwhelming odds against Moshe’s ever awaking from the coma, she continued to maintain hope. She told me that Moshe looked to her like he was just sleeping, and she was able to consistently note and mentally chart his improvements. She also collected stories of other similar cases with positive outcomes. Esther told me that there was nothing in particular about Moshe’s personality or her relationship with him that helped her to remain hopeful. Rather, she derived her hope from charting his progress, however slow or difficult it was to see. I asked Esther what she would have done if Moshe had not come out of his coma after six months or a year or if, after he awoke, he had been severely brain damaged and/or handicapped. She told me that when he first came out of the coma and she observed how aggressive and crazy he had become, she had some doubts about how she was going to live with him. For instance, shortly after he regained consciousness and began to speak, he started lashing out at Esther, using foul language that was not customary for him, and tried to assault her physically. Luckily, his condition improved dramatically.


Esther did feel that after a certain amount of time, if a person is in a persistent vegetative state and does not show any sign of improvement, there is no point in keeping the patient alive. When I asked her to quantify how long she felt one should wait, she said that after one and a half years it would be reasonable to let a person die. However, Esther felt that it is very difficult to judge a person’s quality of life. If, for instance, a person is suffering from great pain, he or she can be given pain killers or palliative care to lessen the suffering. She also felt that one cannot evaluate the quality of life of another in that every person reacts differently to suffering. For instance, one of her patients tolerates marital problems that Esther would find intolerable, but the woman is able to withstand them. Esther does feel, however, that if a person is in a coma with no chance of recovery there is not much point to continuing his or her life. She qualified her answer by reminding me that there is a fine line between allowing someone to die and pulling the plug too soon and that they could easily have given up on her husband. Alon’s wife Tamara felt that it is sometimes a good idea to continue to treat a person, even after the doctors feel that there is no longer any hope, since there is always a slight chance that the person will recover. She cited Moshe as an example of a person who awoke from a coma long after the doctors had given up hope of his recovering. Tamara did not specify how long a person should be treated in such a situation. Esther’s father, who was living in England at the time of his death many years earlier, had had a chronic terminal illness for fourteen years before he died. He had had a series of small strokes that eventually left him extremely debilitated, both mentally and physically. Esther’s mother refused to put him in a nursing home and took care of him at home, which required a great deal of physical care. He slowly lost mental and bodily functions until, by the end of his illness, he did not even recognize people. Esther felt that her mother was trying to be a martyr and that she should have put him in a nursing home long before he died. She felt that it was a terrible and unfair burden on her mother to have to nurse him by herself. She also felt that by the end, when he had to be turned every two hours and could not recognize anyone, there was no quality of life left for him. She did not say or imply in any way that he should have been allowed to die; however, she did feel that he should have been cared for in a nursing home. As to whether a person should be allowed to end his or her own life, she felt that in some cases a person may be depressed and can be helped and thus should not be allowed to take his or her own life without intervention by others. Esther agreed with a decision in which the courts forced a woman, against her will, to have an operation to amputate a gangrenous leg in order to save her life. However, she agreed that there was also a point at which a patient’s condition is so hopeless that one should be allowed to refuse medical treatment, such as a patient with ALS who is paralyzed from the neck down and does not want to be put on a respirator. Esther told me that Moshe never discussed his wishes regarding what he wanted her to do in the event that he ended up in a coma, even after his first hospitalization. He left no instructions as to what kind of medical treatment he did or did not want, even though he drafted a will shortly before his first operation. Moshe did recover from his coma, much to everyone’s amazement. In the six remaining years of his life, he taught, he wrote, he lectured, he traveled throughout

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the world with his wife, celebrated weddings with his family and spoiled his grandchildren. Many of the questions raised by his condition may never be answered: how hopeless is hopeless; how does one judge the quality of a life; and why do some live and others die? One can only say that in this case, the miracle that others only dream of really happened.


Analysis

This case is illustrative of the understandings about where one should draw the line between maintaining life at all costs and needlessly prolonging it. Although this case differs from the previous cases in that there was a positive outcome (i. e. that Moshe eventually awakened from his coma), there are similar problems raised in that the physicians believed that his situation was hopeless; yet, they continued to treat him long after they felt that he had any reasonable chance of recovery. Just as in Aharon’s case, in which several of the doctors continued to treat him long after they admitted that they were fairly certain that he would not recover, in this case, the doctors continuously spoke of the hopelessness of Moshe’s situation; yet, nobody—neither the family nor the physicians—considered the possibility of terminating treatment. Just as Dr. Mizan spoke of the need to continue treating Avi even though he had virtually no chance of recovery because “it’s only time and money being spent,” so Tamara, Moshe’s daughter-in-law stated that “it’s a good thing to continue to treat someone, even sometimes when they think there’s no hope left, because there’s always the chance the person will wake up.” This understanding that one should never give up hope, no matter how futile one’s efforts may seem, can be seen as a major factor influencing these end-of-life decisions. As discussed in the earlier cases, the strong religious influence both on the religious and on the less religious or non-religious seems to be a major factor affecting the decision making process. The strongly religious, such as the Weisbard family, see the religious rules as more than mere guidelines. To them, these rules serve as strict laws that must be followed regardless of the futility of the situation or the hardship they may cause to the family. The less religious, as in the case of Avi and Sonya, may not feel as compelled to obey these rules; yet, they are still strongly influenced by them in several ways. First, they perpetuate the understanding that life is sacred and that, therefore, one should never give up on life, no matter how poor the quality of that life may seem and no matter how hopeless the situation may be. Secondly, since the less religious tend to feel ambivalent about whether these religious rules should apply to their particular situation, many people tend to go along with or allow the religious rules to dominate the decision-making process. As seen in the actions of Sarah’s daughter Hannah, there is a reluctance to contradict or disagree with a decision that one perceives may be required religiously. In this case, both of Moshe’s sons are Orthodox Jews in practice; yet they differ dramatically in their religious outlooks in that one sees himself as highly spiritual/religious, while the other appears to more practical—observing religious rules while adhering to a less overtly religious world view. Yet, both of them are strongly influenced by the religious mores for different reasons. Alon, the older son, considers himself to be deeply religious in a spiritual way. He prays daily, and religious study and practice are an integral part of his life. It is easy to see why, when there is a family crisis, he turns to a spiritual advisor with whom he has had a prior relationship for guidance and support. This religious support is able to provide him with certainty and comfort at a time when he most

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needs it. It provides him with unambiguous answers that Esther says she does not have the “luxury” of believing in. One can see why Alon would be moved to rely on religious influences for guidance. Alon’s religiosity is quite different from the more narrow, strict set of rules and mores relied upon by the Weisbard family. Although they and he are all religious Jews who feel obliged to follow the religious laws, he is quite knowledgeable about other avenues of spirituality, as well as the deeper implications of religious adherence as a guiding force. Yet, both rely heavily on religious influences in guiding their decisions. Despite his broad range of knowledge about the greater religious world, Alon is still strongly influenced by his Jewish roots. Even though it is a spiritual guru who provides him with emotional support, one doubts that he would follow her advice if she were to contradict the Jewish values that he feels compelled to obey. Jonathan, although a practicing Orthodox Jew, considers himself to be the more practical, “scientific” one. He felt compelled to follow the religious rules because he is religiously obligated to do so. Yet, he seemed to find no comfort in them and remained depressed and pessimistic throughout his father’s hospitalization, as contrasted with Alon, who believed that his father would fully recover, despite the tremendous odds against it. What is most fascinating is that Jonathan was the one who turned to a Kabbalist for spiritual guidance. The ceremony that is suggested and eventually carried out is clearly religious in nature and has no scientific basis. One can appreciate this from a psychological perspective. The ceremony allows one who feels helpless in the face of possible death that one cannot control to “change God’s mind” and, in a profound way, change the natural outcome of events. Yet, one must ask why it is Jonathan, rather than his more spiritually influenced brother Alon, who suggested this path. It is quite possible that because Alon already had religious support to which Jonathan did not have access, Jonathan felt the need for guidance to allay his fears. The fact that it was a religious spiritualist to whom he turned rather than looking for a more science-based kind of support might suggest that he was influenced by the religious in much the same way as others were when they did not want to go against religious doctrine, even if they disagreed with it. As there may also be a deeper psychological component specific to Jonathan, I would need more data to draw a definite conclusion here. Another factor suggested by Esther herself is the role of social pressure in influencing people to conform to the religious rules. Just as Esther describes how everyone in Israel sits shiva (i.e. the seven day mourning period after death) after a relative dies, in part because it would be awkward not to follow this custom that is so widely practiced, so too people may feel compelled to follow religious precepts in making end-of-life decisions. Just as one would not want to be seen as failing to mourn a relative’s demise properly, so too one may be reluctant to violate or disagree with strongly held religious beliefs and practices as to when one should give up hope and terminate medical treatment for a dying relative. It is much simpler to allow a relative to linger on indefinitely than to potentially incur criticism from others that he or she was allowed to die too soon. Esther admits that she is not a strong believer or a deeply religious person, yet she maintains certain rituals in order to conform to her community and for the sake


of her children. Perhaps this social pressure to conform was a factor in influencing her and others to continue to encourage the doctors to treat Moshe long after they admitted that there was little hope for his recovery. Providing religious reasons for continuing treatment allows one to remain relatively safe from criticism from the community and to engender agreement and praise from others for maintaining hope. A more subtle influence that can be seen in this and other cases is the Jewish understanding that one should never give up hope. Aside from the more clearly defined religious proscriptions against prematurely terminating a life, this understanding emanates from a Jewish cultural influence. As one informant described it, “there is a Jewish attitude of hope, of never giving up. There is the feeling that at times, it’s all the Jews had. . . However secular, all Israelis are influenced by this Jewish attitude.” This is distinguishable from the religious rules and implies a deeper understanding that continuing to hope and never giving up, no matter how hopeless the situation may seem, is highly valued. As will be discussed in the final chapter, this value derives from a historical/cultural etiology, implying that the very survival of the Jewish people depended upon their continuing to persevere against all odds. Holocaust Day, a national holiday that commemorates the murder of 6,000,000 Jews by the Nazis, falls seven days (i. e. the traditional mourning period) before Israel Independence Day, which commemorates the founding of the country. This day was chosen because it is the anniversary of the Warsaw Ghetto uprising in 1943, an event that became exemplary of Jewish struggle against impossible odds during World War II. This event was chosen specifically to symbolize the eternal struggle and hope of the Jews, no matter how hopeless the situation, and to link it to the founding of the State, which is also seen as having been created by armed struggle against impossible odds (Handelman and Katz, 1995:80-83; Liebman and Don-Yehiya, 1985:206-9). This conveys the importance of the ideal that one should continue to fight against all odds, implying as well that the very survival of the Jewish people is inextricably linked to their refusal to surrender. The founding of the State of Israel is viewed as a victory against insurmountable odds. Israelis speak of how they were greatly outnumbered and how they continued to hope and struggle, eventually winning the war and thus, creating their country in spite of the fact that they were at such a disadvantage. It is also interesting to note that Israel’s national anthem is called “Hatikvah,” or The Hope, meaning that throughout the ages Jews have never given up the hope of returning to their ancient homeland of Israel. Certainly, this powerful message that predated the founding of Israel and continues to be maintained as a core value must affect people’s understandings of the need for continuing to hope and not giving up the struggle in other areas of life as well, including these end-of-life decisions. The message conveyed here is that the survival of the Jewish people, as well as the founding of the country, has depended, in part, on their refusal to give up hope. Thus, one is encouraged in this type of situation to continue to struggle and hope, regardless of the futility of continuing medical treatment. The issue of who makes medical decisions in this case is consistent with what has been shown in the previous cases. Although there was an implicit agreement between the doctors and the family that as long as Moshe was not brain dead the

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doctors would continue to treat him, most of the medical decisions are made by the doctors, with very little input from or consultation with the family. As was seen in the previous cases of Sonya, in which certain physicians felt that they had the authority to make end-of-life medical decisions unilaterally, the understanding here is that the doctor knows best and there is no reason to consult the family, even though this particular family was quite well-educated and maintained a constant vigil by the patient’s bedside. This understanding is not universal but is widely accepted in Israel. There were, however, a few instances in which the doctors’ opinions strongly clashed with the family and the family prevailed, such as when a psychiatrist wanted to give Moshe a tranquilizer and Esther disagreed. Just as in the case of Aharon, the rules are unclear as to who has the authority to make medical and/or end-of-life decisions for the patient. Oftentimes it is the person who voices the strongest opinion who may prevail. Just as in Aharon’s case, in which Dr. Mizan, who had a strong emotional investment in the patient, prevailed over the orthopedist, in the case of Moshe, when Esther voiced a strong opinion regarding her disagreement with the psychiatrist, she was able to prevail. Another factor that affects who makes medical decisions is that family members do not want to make these decisions, particularly when they involve end-of-life decisions. Just as Aharon’s wife Talia told me that, even after she realized that her husband’s situation was hopeless, she did not want to be the one to make the decision to give up on him, so Esther told me that she felt as if she were being asked to “kill” her husband and preferred to have the doctors decide. As can be seen in this case, several physicians—Dr. Stone, the family friend; Dr. Ennis, the treating physician; and a third doctor related to the family—voiced the same opinion, that it was the duty of the doctors and not the families to make the final end-of-life decision. All said that the decision was too difficult and stressful for the family to have to make. Esther and other family members seemed to agree with this and expressed “relief” at not having to decide. There thus seemed to be a general agreement between the doctors and the family that the final end-of-life decision should be made by the doctors because it was too difficult for the family to have to make such a decision. The idea that the family may have ulterior motives and thus should not be allowed to make certain crucial decisions was often stated, both by the physicians and by family members, as a reason to allow doctors to make decisions for comatose patients. The idea expressed was that, whereas family members might have certain irrational or prejudicial reasons to act or to make decisions that might not be in the best interest of the patient, physicians were impartial and free of these irrational prejudices or conflicts. This view is particularly curious in this case in that, although Esther seemed to agree with this general premise of impartiality on the part of the physicians, she also described a scenario in which a caring, intelligent family remained steadfastly beside the patient’s bedside while the doctors often seemed indifferent to the patient. Esther even went so far as to describe an incident in which, in her perception, had she not intervened and insisted that the doctors treat her husband, he could have died due to the negligent indifference of the medical staff. This seems to contradict the popular view expressed by her and others that the


physicians are better able to make these decisions because they have no ulterior motives. Furthermore, as can be seen in the case of Aharon, although the physicians are less likely to have had a personal relationship with the patient prior to his or her hospitalization, it certainly appears that the physicians’ personal views and motives play a role in the medical decisions they make. This is exemplified by Dr. Greenberg, who did not want to allow Aharon to be given a do-not-rescusitate order after, in his view, doctors gave up too soon and allowed his mother to die prematurely. Whether or not this affected or motivated the decisions he made regarding Aharons care, it would be difficult to argue that this physician had no ulterior motives or preconceived notions that affected his decision-making capacity. Why, then, is this view of physicians as impartial, and thus superior, decision makers so widely believed? Perhaps it is because family members may be painfully aware of the feelings they and other family members have toward the patient and the potential motivating factors affecting their ability to remain impartial in making decisions for him or her. Family members are aware of their strong feelings, which are the natural outcome of close familial relations, regarding whether or not they want the patient to continue to live, including feelings of guilt or hostility, feeling burdened emotionally and/or financially, and not wanting to see the patient suffer. Since they are unaware of any motivations by the doctors, who appear to be impartial and knowledgeable, they can attribute ideal expectations to their status as physicians. Even if they come to realize that one or more of these physicians are less than impartial, they can still maintain the expectation of impartiality by the doctors while excepting the particular doctor or doctors from the group. Families may also find it difficult to make these decisions themselves and may want to believe that there is an authority figure whom they can trust and upon whom they can rely to make the correct decision. Particularly when it comes to making decisions that will result in the termination of the life of the patient, the families want to believe that the doctor represents a superior authority figure who can remove the burden of having to decide for them. In order to do this, they must believe that the physician is above reproach and will make the appropriate decision in a situation in which, empirically, there may be no “correct” decision. In resolving this conflict between authority and personal autonomy, these individuals are willing to cede great authority to make these important decisions involving control of the bodies of their relatives. To the extent this is true, this takes precedence over their needs for personal autonomy. This conflict between authority and personal autonomy will be addressed in the final chapter. Lastly, there are several other factors that may influence who makes decisions and what they may decide. These include the patient’s condition, age and potential quality of life, the relation to the patient and family, emotional involvement (those more involved emotionally, whether or not they knew the patient before, get more authority to decide), medical knowledge as it relates to authority, the closeness of the person to the patient, the role of physicians, rabbis, religious beliefs of actors, and the potential condition of the patient if he or she does survive. Understanding these factors and what role they play in the decision-making process will be addressed in the final chapter.

CHAPTER SIX

THE CASE OF FANNYCan a Mind Function without a Body?

Fanny Stein has a disease that most people would dread. It has left her with a completely functional mind and no use of her body from the neck down. She cannot bathe herself nor wipe her own nose. She cannot turn the pages of a book. She cannot even eat food by mouth. She can still talk, but someday she will also lose this ability. Yet she would prefer to continue living in her present condition to ending her life. As long as she is able to breathe on her own and is not put on a respirator, she wants to continue her life. Her two grown daughters agree with her. Fanny, who is 80-years-old, was born in the United States. She moved to Israel with her husband after she retired as a school teacher. Her daughters, Ruth and Maya, moved to Israel twenty years earlier, married and raised their families in Israel. Maya is divorced with grown children. Ruth is married to Yacov, an attorney who was born in Israel to Iranian-Sephardic Jewish parents. They have four grown children. Ruth is younger than Maya by four years. Fanny is suffering from amyotrophic lateral sclerosis (ALS). It is a degenerative disease that causes the person to gradually lose control of his or her muscles, eventually progressing to the muscles involved in respiration and, finally, death. The brain and the capacity to think and reason are not affected by the disease, so that, in the later stages of the disease, the person is unable to move his or her muscles, or even to speak, but is completely aware of his or her surroundings. Fanny first noticed a weakness in her knees about six or seven years earlier. Her condition steadily worsened, necessitating the use of a cane, then a walker, and later a wheelchair. She increasingly had trouble using stairs and eventually had to move to a building with an elevator. Physical therapy did not help, and the doctors could not seem to diagnose the problem. Finally, Fanny was admitted to the hospital, and a neurologist diagnosed the disease. He did not tell Fanny his diagnosis. Rather, he chose to tell one of her daughters the grim news as they were walking down the hospital corridor together. He briefly told her that her mother would continue to get progressively worse, would die within the next six months, and that there was nothing further they could do for her. He then excused himself. Soon thereafter, Fanny was discharged from the hospital without being informed of her complete diagnosis nor of her shortened life expectancy by the physicians. Ruth and Maya found out about an experimental treatment for their mother’s disease and convinced their mother to try it. The treatment involved the use of a new drug that was being tested on patients with ALS. It had never been tried before in Israel. The drug did not work, Fanny’s condition continued to deteriorate, and she became even more discouraged about her illness and her continued deterioration. Fanny’s daughters decided not to tell their mother her prognosis. They told her that she had a disease called ALS but did not tell her that she would continue to deteriorate and was expected to die within six months. Ruth was afraid that she



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would “lose her motivation and become depressed.” Maya felt that she would “lose hope. . . We couldn’t tell her that she was going to die.” They would show her literature about her disease but would cut out certain sections. Ruth told me that it was difficult keeping the truth from their mother because Fanny was so strong, and it left the sisters with the responsibility of having to make all of the decisions for their mother, but they felt that it was their job to protect their mother. Ruth and Maya also decided not to tell their father the truth, as he already suffered from dementia and was unable to fully comprehend what was going on. Furthermore, he was unable to help them in making decisions or caring for their mother. They also felt that he was also quite dependent on his wife and that it would have been too upsetting for him. About two years ago, Fanny started having trouble breathing. Ruth and Maya realized that there would come a time when a decision would have to be made about whether or not to put their mother on a respirator. They did not want to make this decision by themselves, and they decided to tell Fanny the truth so that she could tell them what she wanted. They were not sure how she would take the news, but, once they told her, she was quite calm and stoic. She did not fall apart or become emotional. Ruth thought that her mother might have realized the truth deep down. After their mother was discharged from the hospital, the two daughters–Ruth and Maya—were left with no resources to care for their mother nor information about further care or treatment. They were not told about experimental treatments, nursing facilities, or even where they could get a wheelchair. Fanny lived with her husband, but he had mild dementia and was unable to help. Thus, the two daughters had to make arrangements by themselves for the care of their mother. They managed to find an independent living facility where their parents could have their own apartment. They took turns caring for their mother on a regular basis. This included cooking and cleaning for their parents and increasingly providing nursing care for their mother. As her condition worsened, Fanny was unable to bathe herself and had to be lifted onto the toilet. Ruth had four children at home and would often have to care for her mother after work, leaving her children to look after themselves. Finally, the two daughters were able to get a full time caretaker to care for their mother, which they had to pay for themselves. If they had not been able to afford it, their mother would have ended up in a state-run nursing home. Fanny now has full-time care twenty-four hours a day, seven days a week. The caretaker must lift her with a crane to get her into the bath. She must be turned every few hours to avoid bedsores. She cannot eat by mouth and gets her food from a feeding tube inserted directly into her stomach. If she wants to read, the caretaker must turn the pages for her. She is still able to talk but does not have the energy to carry on long conversations. Yet she is completely alert mentally. Fanny’s husband is physically healthy, but his dementia prevents him from caring for his wife or understanding her condition. He still asks her if she will join him for dinner, even though she has had a feeding tube for over six months. He forgets that she is unable to use her hands and talks about her one day walking again. He is also unable to handle his own finances or go outside by himself, as he will get lost. About six months ago, Fanny started to have trouble breathing and was admitted to the hospital. She was also unable to keep down food and needed to have a

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feeding tube surgically implanted into her stomach if she wanted to continue to live. Ruth’s cousin in the United States advised her not to insert the feeding tube as her mother would have no quality to her life, but Ruth felt that her mother should have it done. The hospital asked for Fanny’s approval to insert the feeding tube, and Fanny signed the papers allowing it, as did Ruth. Interestingly, after Fanny was discharged from the hospital, her condition improved. In fact, after a few weeks, she was able to breathe without the aid of the oxygen tank. Her condition has remained stable for the last six months, and the doctors cannot predict how much longer Fanny will continue in her present condition before she deteriorates and is unable to breathe independently. Ruth told me that if her mother had not wanted it done, she would have respected her mother’s wishes. However, sometime later, Fanny asked Ruth and Maya why they had decided to put in the feeding tube. She told them that she really missed eating and did not like it. Ruth told her that she was very ill at the time and could not eat by mouth. When I interviewed Fanny sometime later, she told me that she did not remember agreeing to the feeding tube as she was too ill to know what she was signing. However, in retrospect, she did not object to it and felt that it made her life easier. Ruth felt that her mother should have the procedure done. She presented it in a very positive manner to her mother, as did the doctors who suggested it. The doctor, who is an Orthodox Jew, also agreed that he would have left the decision up to the patient. He told me that, according to Jewish law, one has an obligation to try to convince someone to accept such treatment but should not force the person. Maya also felt that inserting the feeding tube was a good decision in that it did not make a difference in her mother’s lifestyle and, without it, her mother could not eat. Maya told me that, at the time, her mother consented to the procedure but later did not remember discussing it. However, she told me that even if her mother had not agreed to it, they would have inserted the feeding tube, as they did not want to let her starve. However, Maya also told me that a person should have the right to end his or her own life and that she is against laws that do not allow one to turn off a respirator if the patient requests to be removed from it. As to who made the decisions for Fanny, in the beginning Ruth and Maya made all of the decisions as to what type of experimental treatment their mother should try. (They convinced their mother to try it.) They also arranged for and decided all of the practical aspects of caring for their mother, from finding a place for her to live to getting her a wheelchair to arranging for a live-in caretaker. As to whether or not Fanny should be put on a respirator when the time comes, Ruth and Maya did not feel that they could make that decision for her. The hospital (a religious hospital) told them that if their mother did not want life support at that time they could bring their papers with them showing that that was their mother’s preference, and the hospital would respect her wishes. The same doctors who suggested that Fanny be given a feeding tube advised them not to put her on a respirator, as it would only prolong her suffering and could not help her. The physicians also advised them not to call Magen David (an ambulance service) if their mother was having trouble breathing, as they would automatically put her on a respirator, regardless of what she or the family requested. After that, she could not be removed from it until she died.

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When her daughters asked Fanny what she wanted, she told them that she did not want to be placed on a respirator. They then decided to videotape a living will of Fanny. Ruth’s husband Yacov, who is a lawyer, set up the videotape for Fanny. Fanny is in the center of the videotape, with Ruth sitting beside her as a witness. Fanny’s father and Yacov’s law partner are sitting on chairs on the side and serve as witnesses. Yacov asks the questions, out of sight of the camera. On the videotape, made when Fanny was almost completely paralyzed, she very calmly states, “. . . The nurse said that after a while the oxygen won’t work anymore and Magen David puts you on life support when they’re called. I don’t want it. I don’t want to be on a breathing machine. It’s no life, it’s only a machine. I want to go when my time is up.” She does not discuss ending her life prior to that time, being unhappy or feeling that her life is not worth living. The tape only addresses the issue of being placed on a respirator, and she is quite clear that she does not want it. Ruth and Maya are prepared to accept their mother’s wishes. Ruth told me that if her mother wanted to end her life sooner, Ruth would want to help her but would not know what to do, as one can be indicted in Israel for committing such an act. It would be a difficult situation for her, as she would want to help her mother but would not want to risk going to jail. She thinks a person should have the right to end his or her own life, as it is a very personal decision, and there should not be a law against it. Maya agrees that her mother should have the right to die if she wants but also would not want to be asked to break the law. Ruth is quite certain that her mother still wants to live. She still engages her in conversation and discusses what is going on in Ruth’s family. She asked Ruth to get her a gas mask before a potential war in Iraq broke out. She has also spoken of wanting to see her grandchildren get married. There was some contradiction in how the family members felt about the role that religion should play in influencing or controlling these types of decisions. Ruth described herself as Conservative and somewhat observant. She keeps kosher, celebrates the holidays and lights candles on Shabbat, but she also drives on Shabbat and does not follow other religious rules. She told me that religion enters into the Israeli principle that life must be preserved and that saving a life is more important than judging the quality of that life. She sees this as a positive influence. However, she also feels that there should be a separation between religion and government and that the religious have too much influence in getting laws passed with which the less religious do not agree. Ruth told me that she was influenced more by her individual feelings for and relationship with her mother than by religious imperatives. Maya told me that she is influenced by religion even though she does not consider herself to be religious. She told me that in Judaism one is taught that life is sacred and that there is always hope. She also told me that she is sorry that she does not lead a more religious life but is now divorced with grown children, so there is no point to her now becoming more observant. She agrees with Ruth that the religious have too much influence over what laws are passed and feels that religion and government should be kept separate. Ruth’s husband Yacov told me that his family was quite religious growing up, but he is now “against it all.” However, when he does go to synagogue, he goes to an Orthodox one, as he does not like the Conservative synagogue and sees no point in going to a non-Orthodox one. Although he does not consider himself religious,


he feels that things should be kept the way they have been, as is done in the Orthodox tradition. He is also quite upset that one of his daughters is living in Ireland and dating a non-Jew. The most difficult issue in this case was how these individuals judged the quality of Fanny’s life. More specifically, what factors, or combination of factors, mattered to the people involved in this case in determining whether Fanny’s life was worth living? Was it the ability to think, feel, or maintain social contacts? the presence or absence of pain or the inability to live an independent life? It turned out that most of those closest to Fanny did not agree on this issue. Ruth’s cousin in the United States was shocked that Fanny had had a feeding tube surgically implanted in her. She saw no point in continuing a life when the individual was not only unable to move but could not even eat independently. Ruth disagreed. She felt that since her mother was still mentally alert, she was still able to function as herself. Ruth told me that someone who had Alzheimer’s disease or was mentally impaired had a lower quality of life than her mother. She feels that she can now talk to her mother about things she could not talk about in the past. She thinks that her mother sees life differently now, is more resigned to her situation and is less controlling. What is most important to Ruth is that her mother is completely alert mentally and has not lost her dignity. She is still herself and has respect, even when her diapers are being changed, even with the feeding tube. She has never treated her mother like a child. Fanny still holds onto her role as mother, even when they are making decisions for her. She also feels that her mother has a certain amount of control in that she has someone caring for her twenty-four hours a day. Ruth says that they act almost like her appendages. Ruth also talked about how her mother had always been a strong person who never needed help and could do things better than she could. It was a good feeling for Ruth to be able to help her mother and feel needed. Although she sometimes felt resentful and overwhelmed by the responsibility, it felt good to be able to have her mother need her help in a way that her mother never needed her before. Maya voiced similar sentiments but was somewhat ambivalent about her feelings towards her mother. Although she did feel that she was now able to have a relationship and connect with her mother in a way that she could not have before, she had had a more troubled relationship with her mother in the past than Ruth and still did not feel close to her. She told me that when she goes to visit her mother she finds it very depressing and keeps looking at the clock. There are many things she would like to be able to share with her mother, such as talking about her problems with her own children, but she keeps ninety percent of her feelings hidden from her. Although she is now closer to her than she has been in the past, she still has problems communicating with her. Fanny’s lack of pain is an important factor for Ruth in determining her mother’s quality of life. Her mother is in no physical pain. Ruth felt that seeing her mother in terrible pain would be worse for her. Ruth felt that when a person is in pain, he or she cannot function or think. Seeing her in comfort, seeing her calm face, makes for a greater quality of life, according to Ruth. Ruth felt that when her mother could no longer talk it would make a big difference in her quality of life in that she could not express her needs. However, Ruth would still want her to continue to live. She has thought about how they could

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continue to communicate by blinking eyes or signals. She also sees a difference between her mother being fed by a feeding tube and needing a respirator to breathe. Ruth feels that a feeding tube does not involve any pain, whereas, if her mother were on a respirator, she would be in pain and could not have contact with anyone. It would be a living hell. Interestingly, both Ruth and Maya voiced some doubts about whether they would want to continue to live if they were in their mother’s situation. Ruth told me that she would “jump off the roof” if she had ALS and is in awe of her mother’s ability to accept it. Maya thought that she might want to die if she had ALS, but it would depend more on whether she felt that she were a burden to her children. Maya agreed that suffering and pain were important factors in determining a person’s quality of life. She felt that there comes a point when a person is suffering so much that he or she would prefer not to live. Maya felt that her mother was suffering but was not in excruciating pain. She was not as uncomfortable as someone who is suffering from cancer. Maya sees physical pain as much worse than what her mother suffers from. Her mother can calmly watch television or read, whereas, when someone is in physical pain, one cannot function on any other level. Maya told me about a documentary on Dr. Kevorkian that she had recently seen. She felt that some of the people who decided to commit suicide had done so too soon and still had much to give. She described one woman who was the mother of two young girls. The woman had muscular dystrophy but was still able to function much better than her mother. Although she felt that the woman had a right to make a decision to end her own life, she felt that she was crazy and still had many years left before she would be so debilitated that her life would not be worth living. Maya agreed with Ruth that the feeding tube was a good idea, whereas a respirator would cause too much suffering and there would be too poor a quality of life for her mother. She also felt that once her mother was no longer able to talk, her quality of life would be lowered drastically, especially if she could no longer communicate. However, Maya did not feel that she could ever help to end her mother’s life. Ruth’s husband, Yacov, felt quite different about whether Fanny’s life was still worth living. He was against the feeding tube and still feels that it was a mistake. He felt that Fanny was taking too much from her children, that Ruth and her sister were young and had children of their own to care for while their mother is near the end of her life with no quality of life. He feels that Fanny was asking too much of her children and taking too much from them. Yacov told me that Ruth and Maya gave more than the maximum that should have been expected of them. He also feels that since being diagnosed with ALS, Fanny has become less interested in others and more interested in herself. She used to help out Maya financially, which she does not do anymore, nor does she ask about her grandchildren. She is also very demanding of her caretaker. Ruth knows how her husband feels but thinks he is being pragmatic and does not understand the relationship they have with their mother. She thinks he just sees the suffering and feels that they are prolonging her agony, but he does not see what she can still get out of life. Many years ago, Yacov’s elderly grandfather was operated on for cancer but never recovered from the operation. Yacov felt that they should never have operated on him. Similarly, when Yacov’s mother had a brain tumor


fifteen years earlier, he was against their operating on it and felt that they should let her die in peace. Lastly, I asked Fanny herself how she judges the quality of her own life. She told me that she has been to many specialists and realizes that there is nothing they can do for her, so she has tried to make herself as comfortable as possible. She is still surprised that she has lasted this long. She is almost eighty years old and is fed by machine. Every day is an ordeal for her. Just taking a shower is difficult. She told me that it is very difficult to be so completely helpless except for turning her head. She is unable to wipe her nose or mouth or dry herself. She is able to watch television or read, but she still needs someone to turn the pages for her. Yet I also observed her carry on a conversation with Ruth, listen to Ruth talk about the day’s events and recent movies Ruth had seen, and remind Ruth to order more diapers and arrange to fix the wheel on her wheelchair. She is completely coherent and mentally alert. Although she is not happy with her present condition, she does appear to be resigned to her fate and does not speak of wanting to end her life.

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Analysis

This case raises unique questions regarding when life is worth living and what criteria should be used to make such determinations. In the previous cases of Sarah and Aharon, the doctors knew that the patients’ conditions were hopeless and medical treatment futile, yet they continued to treat them. In the cases of Reuel and Moshe, the individuals involved in the patients’ care knew that there was little chance of recovery; yet they continued to hope for a miracle. In all of the previous cases, the patients were comatose, unable to make decisions for themselves and had little or no hope of recovery. Fanny’s condition presents quite a different dilemma: how should one judge the quality of a life in which the individual is fully awake and competent, not experiencing any physical pain, yet with a body that is unable to function? How does one judge whether the ability to think, talk and breathe outweighs the inability to control even the most simple tasks of everyday life, including eating and digesting food? How does one judge the quality of life of a person who is so utterly dependent on others for her very survival, so completely helpless without the assistance of others? As was seen in the previous cases, there does not appear to be a general agreement among those most closely involved in her care and treatment as to what should be done and how Fanny should have beentreated. Each person involved in Fanny’s case seems to have a different set of criteria as to whether Fanny’s quality of life is so poor that she should be allowed to die or whether there is still some value to her life, regardless of her extreme physical limitations. On one end of the spectrum are her relatives in the United States and her son-in-law, who felt that Fanny should have been allowed to die when she was no longer able to eat independently. On the other end of the spectrum are Fanny’s daughters Ruth and Maya who felt that, as long as she was mentally competent, her life had value and she should continue to live. Each has a different conception of what gives life its meaning and at what point the suffering would outweigh the benefits. Yacov and the American relatives reach similar conclusions but for different reasons. The American relatives felt that one of the main criteria for judging the value of one’s life is whether or not one is so utterly dependent on others that one cannot perform basic functions necessary to continue to live. The inability to eat independently seemed to be a turning-point for these relatives, either because they felt that it was pointless and cruel to force her to continue to live in such a debilitated condition or because they felt that it was a way of allowing her to end her suffering by failing to insert a feeding tube, without having to actively intervene. Yacov agreed that it was pointless to insert the feeding tube but based his judgment on Fanny’s inability to contribute to the well-being of others and the hardship she was causing others. Just as he wanted to allow his dying, elderly grandfather and dying mother to die rather than have the doctors temporarily extend their lives, so he felt that Fanny had reached a point in her life at which her life had no quality or meaning. Ruth and Maya, who were the most involved in Fanny’s treatment and the most burdened by having to care for her, adamantly felt that Fanny was living a


worthwhile life and that she should continue to live, regardless of her physical condition. Ruth felt that as long as her mother was able to think and communicate, it did not matter how debilitated she became. As long as she could continue to relate to her mother intellectually and converse with her, she was able to see her as a functioning human being with a worthwhile life, despite her physical limitations. She visited her mother often and was fully aware that her mother spent practically 24 hours a day lying in the same position in the same bed, unable to move; yet, for Ruth, her mother’s life still had meaning. Maya seemed to agree with Ruth that as long as her mother’s brain continued to function, she should continue to live. Maya spoke of a patient of Dr. Kevorkian, whom she described as debilitated but whose condition was much better than her mother’s, who wanted to commit suicide. Maya was disturbed that someone who still “had much to give” was willing to end her life. Maya did not equate the physical limitations, even those as severe as her mother’s, with an inability to live a worthwhile life. Fanny’s own criteria for determining the value of her life seemed to be closer to those of her daughters than to the outside relatives. She seemed to agree with them that her life still had value, and she wanted to continue to live as long as she was able to think and communicate. She was not willing to continue her life on a respirator, presumably because she would then be unable to talk or communicate her needs. However, she wanted to live despite her extreme physical limiations, including the inability to swallow food. Those who held the status of daughters seemed to be the primary decision makers. Their criteria for determining the value of Francis’ life seemed to be whether Francis was able to think and communicate; and her physical debilitation, no matter how severe, was irrelevant to them. Yacov, Francis’ son-in-law, and the U.S. relatives held the status of concerned outsiders with no decision-making authority. They both reached the same conclusion using different criteria: Yacov relying primarily on the criterion of usefulness to others and the U.S. relatives using the criterion of total dependence on others for life’s basic necessities. Their only influence on the decision-making process was to express their opinions indirectly to the daughters, who alone made the decisions. Fanny’s status as the object of the debate over the quality of her life used the same criteria as her daughters. Interestingly, she was not a primary decision maker. Rather, her influence on her daughters, who were the decision makers, was to give tacit approval to their actions and to set the parameters, or outside limitations, beyond which they could not go. For instance, they could not decide, without her express approval, to place Fanny on a respirator. It thus seems that those whose status was closest to Francis (i. e. the daughters and Fanny herself but not the son-in-law or outside relatives) used criteria to judge the quality of her life that reflected their ability to continue to maintain their relationship with Francis, whereas those who held a more distant status used criteria that were based on external factors such as ability to function. In examining the responses of Ruth and Maya, one can see the religious influences that were present in previous cases—the understanding that life is sacred and that one should never let go of life, no matter how poor the quality of that life may be. In contrast to their American counterparts, who spoke of the need to consider the quality of one’s life rather than assume that all life is sacred, Ruth and

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Maya never seemed to consider the possibility that their mother’s life was no longer worth living. This religious sentiment was repeated by several rabbis who were considered to be experts in the field of Jewish medical ethics. As I noted in Chapter III, Rabbi Emmanuel Jacobovitz, author of several texts on the subject, was asked during a lecture in Jerusalem on the subject about a case of a seven-year-old child who had a seizure, was resuscitated, and remained in a coma in a persistent vegetative state for four years, with no hope of recovery. When asked whether there was any point to keeping this child alive, Rabbi Jacobovitz answered that since the child was completely dependent on others, one cannot say that he was not contributing in that he may have been helping his care givers become nobler beings—and that, therefore, one cannot say that this life was worthless. This absolutist view of the value of life is not universally accepted by Jewish religious leaders. Rabbi Avraham Steinberg, who is also a recognized expert and has written extensively on the subject of Jewish medical ethics, is a practicing physician in addition to his rabbinic duties. Rabbi Steinberg spoke of the belief that life itself is a value, regardless of the quality of that life. Yet, he distinguished between a minority absolutist view, as expressed by Rabbi Jacobovitz, and another accepted view that although one may never actively terminate a life, in a situation in which a person’s condition is terminal and he or she is suffering, one may agree to a do-not-resuscitate order. Even this majority view holds that one may never terminate a life but may only cease to prolong it actively in limited situations. This powerful religious influence is a crucial factor affecting people’s understandings regarding when life should end. Just as Rabbi Jacobovitz argues that life itself has value regardless of the complete absence of any quality to that life, a view with which Rabbi Steinberg seems to agree in principle, so Fanny’s life is seen as having value despite the extremely poor quality to her life. This understanding—that unless one is on the verge of dying and is suffering (and, according to some views, even this is not a sufficient reason to give up on life) one should not only cling to life but should actively seek to preserve it—seems to affect the understandings of Ruth and Maya in their beliefs that their mother’s life should continue to be preserved. Unlike their American relatives, who express disapproval of the daughters’ actions in preserving a life that they deem to have so little quality, Ruth’s and Maya’s understandings of the value of life are consistent with this absolutist religious view of life. Another factor influencing Ruth and Maya is the effect of family ties on deciding whether or not to continue treatment. Both daughters speak of the great sacrifices they made to care for their mother after her illness was diagnosed. Ruth is more enthusiastic and was pleased that she felt needed by her mother in a way her mother had not allowed in the past. Maya is more ambivalent, deriving some satisfaction from her ability to help her mother, yet resentful of her inability to establish a closer relationship with her. Perhaps another factor influencing their wish to keep their mother alive is their desire to feel useful, to feel needed and accepted by her in a way that they were unable to feel before Fanny’s illness. Ruth’s husband Yacov does not seem to understand or share this need to feel useful and accepted by Fanny’s daughters. Instead, he sees their efforts as an unfair burden that they should not have been asked to bear. He may also be angry about


the amount of time his wife has spent with her mother to the detriment of their family and may resent Fanny for taking Ruth’s attention away from him and their family. It may be worth noting that Ruth and Yacov have four children and that for many years Ruth and her sister were traveling to their mother’s home several days a week and all weekend to shop, cook and clean for their mother. In addition, they spent countless hours searching for both traditional and experimental cures for their mother. The emotional toll of making all decisions and keeping the truth from their mother must have also been tremendous. In fact, Ruth told me that she was on the verge of getting an ulcer from having to cope with her mother’s illness. The response given by Ruth’s husband Yacov did not seem to reflect the cultural/religious understandings discussed above. Although there is much disagreement over whether Fanny should have been given a feeding tube when she could no longer digest food or feed herself independently, everyone involved in this case seems to agree that placing Fanny on a respirator when she is no longer able to breathe without one would be pointless. Even the religious doctor who encouraged the family to have the feeding tube seems to agree that there is no point in continuing to live in a situation in which one is fully competent mentally yet unable to move, communicate or breathe independently. All agree that the suffering involved in this type of existence does not justify the continuation of life. The individuals involved distinguished between the intervention involved in a feeding tube versus a respirator in that a feeding tube did not involve pain or discomfort and allowed Fanny to continue to function as she had done prior to its insertion. In contrast, they described the respirator as a “living hell” in which Fanny would be living in constant pain and discomfort with no quality to her life. Even the religious doctors seemed to agree that the discomfort involved in living with a feeding tube did not outweigh the benefit of continuing to live, yet they agreed that the suffering involved in living with a respirator was too great to justify the continuation of life. Even these religious doctors who believed that life was sacred and that one should never give up hope agreed that there was a point at which one may reasonably give up, when the suffering, the pain and the discomfort make it pointless to continue to treat a patient. It is interesting to note the similarity to Sonya’s case, in which the doctors agreed not to place Sonya on a respirator yet insisted on inserting a feeding tube in her when she was unable to eat. The doctor in Sonya’s case told me that she “shouldn’t be starved. Fluid and food are basic to life.” Similarly, in Fanny’s case, her daughter Maya stated that she “didn’t want to starve” her mother. In both cases, not providing a feeding tube is seen as actively allowing a person to die, even implying that it would be a painful type of death. In contrast, failing to insert a respirator is equated with allowing a person to die of natural causes. Even in Sonya’s case, in which she was clearly dying and was unable to eat because her bodily functions were shutting down, the understanding of the doctor was that she had an active duty to intervene and that providing food was part of basic medical care. This perception of equating not feeding with actively killing (i. e. starving) a patient versus not assisting with respiration being equated with passively allowing nature to take its course is a major factor affecting these individuals’ understandings of the difference between the two interventions.

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Why is such a clear distinction drawn between a lack of food and a lack of breath? Perhaps breathing is something that is done automatically and cannot be controlled, whereas food can be given or withheld at will. Breathing is simple. One either breathes or does not breathe. Eating is a complex process that involves both biological needs and psychological and social rewards that also encompass cultural elements. Food may be used as a reward and its withholding as a penalty. Eating is a social activity involving sharing and giving. There are tasty foods and not-so-tasty foods, foods that are considered “clean” and those that are considered not so clean. Food can be associated with love, particularly in the Jewish tradition (hence, the stereotype of the Jewish mother as one who constantly urges her children to eat). This distinction between breathing, which is considered a purely involuntary, biological process, and eating, which is a highly complex, voluntary activity that fulfills not only a biological need but a myriad of social and psychological needs as well, must influence people’s understandings of the difference between the two. The religious influence may also play a role in distinguishing between a feeding tube and a respirator. In traditional Jewish religious terms, breath is equated with life. Whereas the less religious use brain death to determine the time of death of a patient, many religious Jews still determine the time of death by the cessation of the heart and breath. There are references to this idea of equating life with breath as far back as the Hebrew Bible. For instance, in the biblical story of Noah, the Bible refers to the death of “all in whose nostrils was the breath of life” (Genesis 7:22; see also Genesis 2:7; 6:17; 7:15; and Deuteronomy 20:16). There are linguistic connections as well between the two in both biblical and modern Hebrew. Often, the words for breath and for life are interchangeable. Tthe Hebrew word n’shama means soul or breath. It is the same root as the word linshom , to breathe, and the word hanshama, respirator (literally, breathing thing or device). The Hebrew word ruach means spirit, wind, breath or respiration. The Hebrew word nefesh means life, soul or person but its semitic root meaning is to breathe (Brown 1972:659). Thus, there is a powerful religious connection between breath/respiration and life that must influence why people view the lack of respiration as a natural cause of death whereas they see the lack of an ability to eat or digest food as unnatural and needing to be corrected. As to who should make the medical decisions regarding Fanny’s care and treatment, there is much ambivalence over whose authority should prevail. As to the initial issue of whether the family should try experimental treatment, the doctors did not feel that they were even obligated to inform the family of this choice. They decided that Fanny could not be treated and discharged her from the hospital. As to the decision to perform the gastrostomy, Ruth and Maya stated that Fanny was informed and made the final decision; however, Fanny claimed that she was extremely ill and somewhat incoherent and does not remember being asked to make this decision. The physicians were clearly in favor of having the procedure done, but it is not clear what would have happened if Fanny or her daughters were against it. One doctor stated that he would have tried to convince Fanny but would not have forced her to have it done. It thus seems that, since both the doctors and Fanny’s daughters were in agreement and Fanny was not in a position to object, the procedure was performed with the ostensible approval of Fanny (she signed a form but later stated that she did not remember signing it). Rather than make a decision


that would have resulted in Fanny’s demise, they all agreed to have the procedure performed. A decision was made by the physicians and by Fanny’s daughters not to tell Fanny the entire truth about her condition when she was first diagnosed, reasoning that it would be too upsetting for her. Instead, the doctor told Maya, who then made a joint decision with Ruth to keep the truth from their mother. This gave the daughters the authority to make all medical decisions on behalf of their mother. They decided to look into experimental treatments and then convinced Fanny to try them. They decided how much information to give their mother regarding the progress and eventual outcome of her disease. Since they were the most assertive and the most personally involved, the physicians seemed to agree to cede this authority to them and not inform Fanny of her prognosis. This concept of not informing the patient of the prognosis of his or her disease because of the possibility that it would upset the patient or impede his or her progress was common to many of the cases I observed. In most cases, a family member made a decision that the patient should not be told the entire truth about the disease (usually the fact that it was terminal), and the physicians agreed to keep this information from the patient. In one case, an elderly woman was suffering from terminal lung cancer that had spread to her brain. The son knew that she had only a few months to live, yet he convinced the doctor not to tell her the truth about her condition. When his mother tried to seek a second opinion as to why she was not improving, he spoke to the second doctor and convinced him to keep the truth from his mother. In another case, an elderly man was suffering from end stage cancer that had metastasized. His wife was quite insistent that he should not be told that he was about to die, as she was concerned that it would upset him. The doctors acceded to the wife’s wishes and did not discuss the prognosis with the patient. Even when the patient was in excruciating pain two days before his death, the wife refused to admit to her husband that he was about to die. His wife was fully aware of the terminality of his condition. Yet, even when he tried to tell her that he thought that he was dying, she told him that he was going to get better and that “they would walk the streets of Jerusalem together.” This idea that it is more important to protect the patient from perceived psychological trauma than to tell the patient the truth also removes personal autonomy and decision-making authority from the patient. If one is not informed of the true nature of his or her disease, one must rely on others to make certain medical decisions. This conflict between authority and the importance of personal autonomy, as has been seen in previous cases, will be discussed more fully in the final chapter. In this case, Fanny was eventually informed of the true nature of her disease. When she was told, she was quite stoic and accepting of her situation. It is interesting to note that her daughters only decided to tell Fanny the truth when it came time to make a decision regarding whether she should be placed on a respirator when and if she could no longer survive without one. Perhaps Ruth and Maya knew deep down that Fanny should not be placed on a respirator, yet they did not want to be responsible for a decision that would result in the death of their mother. If they had waited until a decision was imminent, it would have been too late to ask Fanny

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what she wanted, and they would have either had to allow her to die, and live with the guilt, or force their mother to live, fully conscious and attached indefinitely to a respirator, unable to move or talk or communicate, knowing that it would be extremely difficult, if not impossible, to have her removed from it. Thus, they had chose to inform Fanny of the truth and allow her to make her own decision, since they were not prepared to make this decision themselves. Lastly, the role of Fanny herself, the still quiet voice in the background, seemingly controlled by her daughters yet controlling much herself, can be seen as subtly affecting her daughters’ choices. Although she seems to have allowed her daughters to have taken over and made many decisions for her, she does not object or voice disapproval with their decisions. Although she claims that she was unaware at the time that she had signed a document agreeing to the insertion of the feeding tube, she later voices her approval. She has not complained to her daughters about her condition or asked to be allowed to die, nor has she suggested that her daughters have taken on too great a burden. Rather, she seems content to allow them to decide and gives her tacit approval to their actions. It is unclear whether she realized the gravity of her condition and its terminality prior to being informed of it by her daughters; however, once she was asked to make decisions for herself, she was quite clear about her preferences. One may thus assume that she was in agreement with allowing her daughters to remove the burden and make the decisions for her.

CHAPTER SEVEN

THE CASE OF RONITA Judge is Brought in to Rule on a Life-and-Death Matter

Ronit Tikva knew that her pregnancy would be difficult, but she never thought that she would come so close to death, nor did she imagine that her life and the life of the fetus growing inside her would be placed in the hands of a judge she had never met. She pictured a difficult nine months of pregnancy followed by the birth of a much loved and anticipated baby. Instead, she ended up near death in a deep coma. Her family stood by as a strange doctor called in an even stranger judge, one with religious convictions quite different from theirs. This judge decided that the matter should not be left in the hands of the family. He relied on religious precepts that dictated that the fetus must be allowed to live regardless of the wishes of the family and regardless of the possibility of a serious birth defect. Ronit and her family had no choice but to follow the orders of the judge. Ronit was twenty-one years old when she was first diagnosed with lupus, a chronic disease that affects one’s immune system. She had finished her army service and was living on a kibbutz with her boyfriend when she started experiencing the first symptoms of her disease. Her condition continued to worsen until she was unable to care for herself and moved back home with her family. The disease also caused her to be hospitalized several times before her condition finally stabilized. Ronit knew that there were some risks to her becoming pregnant. She had uncles in Sweden who were doctors, who advised her not to become pregnant. However, Ronit was told by Israeli doctors that they sometimes allowed their patients with lupus to become pregnant, depending upon the severity of the case. Ronit’s illness varied in that she would have periods in which she was quite ill and periods when she was healthy and able to function. Ronit did not discuss her specific condition with a physician prior to becoming pregnant. She was anxious to have a baby, and when she “accidentally” became pregnant she decided to continue her pregnancy. Ronit’s father has a Ph.D. in endocrinology from the Hebrew University medical school. He advised Ronit that it was dangerous for her to continue her pregnancy and suggested that she have an abortion. Instead, she went to a religious doctor who told her that her pregnancy would not cause her any problems with her underlying disease. Ronit also went to see another doctor, who practiced alternative medicine. He advised her not to increase her cortisone, which her father also felt was a mistake. Ronit’s mother was initially against the pregnancy and advised Ronit to have an abortion. However, after Ronit insisted on continuing her pregnancy, her mother supported her decision.



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Ronit’s boyfriend had not planned on Ronit’s becoming pregnant, but he also supported Ronit’s decision to have the baby. He and Ronit had known each other for seven years and had lived together in the past. They were considering marriage at the time but were both still in college, did not have steady jobs, and were living at home. Once Ronit decided to continue her pregnancy, they were married and moved to an apartment together. When Ronit was about six months pregnant, she became quite ill and had to be hospitalized. Her condition deteriorated when she developed kidney problems and hypertension. She was given massive doses of cortisone to treat it, but they could not stop the progression of her symptoms. She started having trouble breathing, and tests revealed that she had contracted pneumocystic pneumonia. She was given pentamadine and other powerful drugs in an effort to save her life, but her symptoms persisted. She also developed adult respiratory distress syndrome, was intubated, and had to be mechanically ventilated. By this time, the physicians did not know whether Ronit would live. She was twenty-eight-weeks pregnant (Ben-Chetrit, Eldad, 1993:636-639). At this point in her pregnancy, the physicians did not know whether the fetus had been damaged by Ronit’s condition or by the drugs they were giving her to save her life. Two young doctors spoke with Ronit’s parents and husband and asked them if they wanted them to perform an abortion because of the possibility that the fetus could be deformed. Dr. Klein, the head of intensive care where Ronit was a patient and who had been in charge of Ronit’s case was out of town for a few days. The family was torn about what to do. Before the family could decide what they wanted, Dr. Levy, the chief of obstetrics and gynecology, decided to take charge of the case. He did not speak with or consult Ronit’s family about what was happening or what should be done with respect to the fetus. Instead, he immediately asked that a judge be called in to decide the matter. A few years earlier, Dr. Levy had had a similar case, in which a mother was about to die and the family did not want the fetus to be removed in the event the mother died. In that case, the mother was forty weeks pregnant. The judge had decided that the court did not have jurisdiction and that, therefore, the fetus could not be removed from the mother without the consent of the family. Dr. Levy told me that he was quite disturbed with that decision and wanted to find another case to overturn the prior case. He thus decided to use Ronit’s situation as a test case. Dr. Levy told me that if the family had agreed with him that the fetus should be saved in the event the mother died, then he would not have called in a judge; however, he did not feel that it was up to the family to “kill” the child. Ronit’s parents told me that Dr. Levy never discussed the matter with them prior to contacting a judge. The Ministry of Labor and Welfare was called in to handle Ronit’s case, and the matter was assigned to attorney Jonathan Green, an American lawyer who had moved to Israel many years earlier. Mr. Green was told that the hospital had a woman who was on the verge of death and that the husband objected to removing the fetus in the event his wife died. There was also a question of the whether or not the fetus would be severely deformed due to the mother’s condition and/or the drugs she had been given to save her life.

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A social worker was immediately sent in to investigate the case and interview the family members. Ronit’s husband told the social worker that he did not want the fetus to be removed from Ronit if she were to die. He was concerned that it would be severely deformed, and he could not raise it by himself. He also did not want the child given to strangers to raise. Ronit’s father agreed. He felt that they did not know whether the baby would be born with any deformities nor how severe such birth defects could be. Furthermore, he did not feel that he and his wife could help raise the child, nor did he think that it should be born without a mother. He also felt that Ronit would not have wanted the child to be born if she were to die. Ronit’s mother disagreed. She wanted to honor Ronit’s wishes, and she felt that Ronit would have wanted the baby to live. She agreed with her husband and Ronit’s husband that the fetus should not be delivered if it was going to be deformed; however, she felt that the fetus would be healthy because one of the specialists had told them that it was not deformed. Mr. Green, the government attorney, wanted the social worker to ask Ronit what she wanted, but a psychiatric expert who was brought in felt that it would be too harmful to Ronit, psychologically, to ask her opinion and could cause her great harm or hasten her death. Therefore, the social worker did not attempt to interview Ronit or discern her opinion. (The court made a finding that merely presenting the question to her could affect her medical condition or influence her ability to fight for her own life.) It is not clear how coherent Ronit was at this point or whether she was even well enough to comprehend what was happening. According to the majority of the doctors, there was a twenty percent risk that the fetus would die after birth due to prematurity and a forty percent risk that it would suffer from some degree of deformity. Dr. Levy agreed that if the fetus were to be born after Ronit died, it would have only a sixty percent chance of developing into a normal and healthy baby. Immediately after the social worker completed her interviews, Judge Yardin held a court hearing in the evening at the hospital. Ronit’s parents and husband were present at the hearing, as were Ronit’s in-laws. Several doctors involved in Ronit’s care were also present, including Dr. Levy. The judge also asked the hospital rabbi to appear at the hearing. After allowing all the parties to give their opinions, Judge Yardin ruled that the fetus must be allowed to live in the event that Ronit died. Judge Yardin was the judge on duty to hear urgent cases the week that Ronit’s case was called. He is a religious man who felt that both secular Israeli law and Jewish religious law needed to be considered in this case. Prior to deciding the case, he called Dr. Avraham Steinberg, who is a friend of Judge Yardin, for advice on how to decide this case. (Dr. Steinberg is a physician and a well-known expert on issues of Jewish law as they pertain to medical ethics. He is also quite religious.) Dr. Steinberg advised him about various rulings that had been made by Israel’s chief rabbinate dealing with the issues of this case. He also discussed with Judge Yardin the ruling in the prior case of Mamon, in which Dr. Levy was involved, which both Dr. Steinberg and Judge Yardin agreed was legally wrong. The Mamon case involved a woman who was nine months’ pregnant and was involved in a fatal accident that left her brain dead. Her husband did not want the fetus removed from its mother after her death. The judge who was brought in to decide the case ruled that he did not have jurisdiction to appoint a guardian for a

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fetus who had not yet been born. Therefore, he would not agree to order the physicians to remove the fetus. The fetus died in its mother’s womb along with the mother. Judge Yardin disagreed with this legal interpretation. According to him, the previous judge misinterpreted the law of Capacity and Guardianship, which defines who is a “chasui,” or incompetent person in need of a protection. According to Judge Yardin, the law states that a fetus may be considered under the law as a “chasui.” However, he told me that there is a contradiction in the law in that it defines a “person” for whom a guardian may be appointed as existing from the time of birth to the time of death. Despite this contradiction in the law, he ruled that the fetus in Ronit’s case was a “chasui” under the law. He told me that it was an easy decision for him because according to Jewish law, whenever one can save a life one must do so. After holding a hearing at the hospital, Judge Yardin first ruled that the mother’s life took precedence over the life of the fetus. Therefore, as long as the mother was alive and aborting the fetus could put her at risk of death, an abortion should not be performed. However, once the mother were pronounced clinically dead, the doctors had the right to remove the fetus, regardless of the wishes of the family or even the wishes of the mother. Judge Yardin upheld his ruling on the basis of both the secular law of Anatomy and Pathology and on Jewish religious law. Judge Yardin first cited the law of Anatomy and Pathology, which deals with the issue of when the body of a deceased person can be dissected. Section 6c of the law states, “The removal of a child from the body of a dead woman in order to enable him to live shall not be regarded as a dissection within the meaning of this Law” (Law of Anatomy and Pathology, 1953, amended in 1980). Judge Yardin interpreted this to mean that that the physicians had the right to remove the fetus from Ronit’s body (In re Tsalik). Judge Yardin then went on to discuss religious precedents that supported his decision. The judge cited a particular Jewish law that holds that when a mother dies and the fetus is in her womb, his life must be saved, even if it would desecrate the sabbath to do so (i. e. by causing the physicians to work on the sabbath, which is prohibited). He also cited Rabbi Eliezer Waldenberg, who he described as a “famous arbiter in medicine and Halacha (i. e. Jewish legal) issues,” who wrote that one must operate on a woman who is determined to be brain dead in order to save the life of the fetus (In re Tsalik, p. 8). (I received copies of all the legal documents from Ronit, who had obtained copies of all papers relating to her case some time after she awakened from her coma and recuperated from her illness.) As I indicated above, Judge Yardin told me that this case was not difficult for him to decide, since he knew that according to Jewish law there is a principle that the saving of a human life should be a primary concern. He was then able to look for a law that supported this principle. He also felt that since this was an important issue and that the law of Anatomy and Pathology was merely a technical solution, he needed to cite Jewish religious law to give more authority to his decision. During our discussion, he cited several other examples from Jewish law that he felt supported his decision. He told me of a case from the Talmud in which a mother was in labor on the sabbath. Although one is not allowed to work on the sabbath, the saving of a human life takes precedence over the prohibition on work, and


therefore one is obligated to assist the woman in giving birth. He also told me that, according to Jewish law, a fetus is considered a human for this purpose. Another principle he cited was that if one contravenes one sabbath in order to save a fetus, that fetus will be able to preserve many sabbaths in the future. The night after the hearing, Ronit spontaneously went into labor and delivered her daughter. The baby weighed only two pounds, but her lungs were healthy due to the cortisone that her mother had been given. The only permanent problem she had was that her eyes were quite weak. At the time I interviewed Ronit, her daughter was six years old, quite healthy, and, according to her mother, very smart. However, she is legally blind, has had several operations to correct her vision and may not be able to attend public school due to her inability to see more than one or two feet in front of her. Ronit was still quite ill after the baby’s birth. She remained in the intensive care unit and later in other units of the hospital for several months before she could be released from the hospital. Her daughter was cared for by her mother-in-law, and Ronit was cared for by her mother when she left the hospital. Ronit eventually regained her strength and was able to care for herself and her baby. All of the family members were quite upset that this case was brought before a judge without anyone attempting to speak with them or work things out with the family prior to bringing the case to court. They all felt that Dr. Levy was quite insensitive and was using Ronit’s case to set a legal precedent rather than speaking to them or explaining what was happening. (Dr. Levy admitted to me that he brought this case before a judge for the purpose of overturning the previous case in which he was involved, with which he strongly disagreed.) Ronit felt that the case should have been decided informally between the family and the doctors. When I asked her who should decide if the family and doctors disagree, she told me that as long as they discuss it they should be able to reach an agreement. She did not think that a judge should be called in to decide these issues, since every case is different, that it is “not like mathematics where there’s only one answer.” She felt that the family’s opinion should be given greater weight than the doctors, but the doctors should also be consulted and should explain to the family what is happening. When I asked her whether they should have consulted with her about what she wanted, she told me that it was a difficult question for her to answer. She did not realize how sick she was and may not have been able to give them an answer. She wanted the baby very badly, but she was not sure that she would have wanted the baby to be born and raised by others if she were to die. She told me that if she became pregnant again and this issue had to be decided a second time, she would want her husband to make the decision. Ronit’s father told me that he knew Dr. Levy as an acquaintance prior to Ronit’s hospitalization, but Dr. Levy never bothered to speak to him or any other family member prior to calling in a judge on this case. Rather, he received a notice that there was going to be a court hearing that evening. Ronit’s father felt that Dr. Levy brought in a judge because of the principle involved and because he wanted to be able to publish an article and become known. He was quite disturbed with the doctor’s lack of humanity and compassion in dealing with the family. Ronit’s father felt that the decision should have been made by the family alone. He told me that

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“this isn’t for strange people to decide and certainly not for a judge, especially a religious judge.” Ronit’s mother also felt that they should have spoken with the family prior to bringing in a judge. She told me that this was the “Israeli way of doing things —the rough way, not polite. In Germany, they’re polite, even if they then kill you. Levy was not polite, he goes down like a tractor doing what he thinks is right.” Although she agreed with Dr. Levy that the fetus should be saved if Ronit were to die, she was upset with the callous way in which he proceeded to go about it. She felt that this decision should have been made primarily by Ronit and her husband but that the doctors should have had some say in the matter. She did not think that a family should be allowed to decide this issue alone. Rather, it should be a joint decision between the family and the doctors and should be a logical decision. According to Ronit, her husband was also quite upset that a judge was brought in to decide the fate of the fetus in the event that Ronit were to die. Ronit told me that he was particularly upset with Dr. Levy, who he felt was “immoral” because he did not even attempt to discuss the matter with the family. However, I was unable to speak directly with Ronit’s husband as Ronit told me that he finds it quite difficult to talk about this case. Since Ronit was my main informant and I did not want to jeopardize my relationship with her, I did not make any other attempts to interview her husband. Dr. Levy told me that he did not feel that the family had a right to decide this case. If the family had agreed with him, there would not have been a problem, but “to kill the child is not up to the family.” He admitted to me that he was upset with the prior opinion of Mamon and wanted to change the law on this issue. He told me that Ronit’s case is now the law in the entire country and that he believes that it is a good law. (Other legal experts, including Judge Yardin, told me that this case has very little precedential value.) Dr. Klein, who was the head of Intensive Care and was in charge of the unit where Ronit was being cared for, was out of town when Dr. Levy brought this case to court. When he returned, he was quite upset. He told me that Ronit was his patient and that he would have worked it out with the family rather than drag them through a court case at such a difficult time in their lives. Although Dr. Klein is quite religious, he told me that he probably would have accepted it if the family did not want to save the fetus in the event that Ronit died. According to his interpretation of Jewish law, one is only obligated to save the mother. He also felt that Ronit was not close to brain death and was not ill enough to insist that a decision be made on such short notice. As to what role religion should play in deciding these types of issues, Ronit first told me that she felt that some religious laws were sensible and that religious and moral issues were related. She felt that some Jewish law is logical and should be referred to if it aids in making the decision, but it cannot be relied on exclusively. Later, Ronit told me that religion should not be involved in deciding these cases unless the family is religious and requests that a rabbi or religious expert be brought in. She felt that the lack of separation between religion and government in Israel was a big problem and that it would be better for everyone, including the more religious, if the two were kept separate. She also felt that people in Israel had become more fanatical on religious issues in recent years.


Ronit described her family as not religious. Both she and her parents are anti-religious and do not attend synagogue or observe any religious rules. The last time her parents went to synagogue was when Ronit got married. Her husband is from a more religious, Sephardic family, although he is not very religious. He fasts on Yom Kippur, goes to synagogue on that one day, and celebrates Jewish holidays, but he is not observant of the religious rules. When he attends services on Yom Kippur, he goes to an Orthodox synagogue because it is the one that his family attends. Although he does not keep kosher, he does not like to eat meat and milk together. Ronit’s father strongly believes that religion is a private matter and should be kept separate from governmental issues. He realizes that this is a problem in Israel since the country has an official religion. He believes that the laws in Israel are unclear because Jewish law is not always clear. Furthermore, judges try to reconcile Jewish law with the British laws that were in existence before Israel became an independent country. He feels that religion may provide some common sense answers, but once one claims that God has mandated a certain law there can no longer be any discussion of the issue. He agrees with the American way of keeping religion and government separate and of not imposing one’s religious views on others, unlike the system in Israel. He also feels that pressure from the ultra- religious to conform to their way of thinking is becoming more of a problem. Ronit’s father told me that he is completely secular and does not follow any religious rules. However, at the time of our interview, his mother had died thirty days earlier, and he was following the religious custom of not shaving for a certain period of time after a parent’s death. He told me that this is what his mother would have wanted him to do. He told me that he likes some of the religious traditions, except for Yom Kippur (on which one has to fast), but he does not agree with all of the rules and beliefs. He feels that everyone should have the right to decide what he or she wants to believe and that religious rules should not be imposed on individuals. Ronit’s mother also considers herself to be completely secular in her beliefs and practices. She felt that it was wrong to bring in religious laws in Ronit’s case, even though they happened to coincide with what she wanted the judge to decide. She came to the same conclusion from a humanistic point of view. However, Jewish law would mandate that a severely deformed baby should be born, and she feels that this is wrong. She also feels that it is wrong to keep people alive who are in a persistent vegetative state, but the religious insist upon doing so because they are bound by their rules and their interpretations of it. She believes that they are using ancient standards and applying them to modern situations, which does not make sense to her. She told me that when a person is brain damaged forever, there is no point in keeping the person alive. She feels that a central religious thought is to live and let live and that if one goes only by the rules, one is forgetting the origin of religion. She thus felt that, although she agreed with the judge’s decision, it should not have been based on religious law. Ronit’s mother told me that she used to feel quite negative about anyone who wore a kippah (yarmulke) but that she has mellowed with age. She still thinks such individuals are strange, but she sees some reasonableness to it. She is worried that the religious are taking over the country and starting to dictate what others may or may not do, such as driving on the streets on Shabbat. Her family has always

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celebrated Passover, but they keep the service short and keep bread in the house during the week of Passover (which is proscribed by religious law). They also lit candles on Chanukah, but did so more for social reasons. However, she strongly resents not being able to drive on Yom Kippur and resents the religious direction that the country seems to be taking. Judge Yardin felt that he had to cite religious law to give his opinion greater weight. If he had cited just the secular law of Anatomy and Pathology, he felt that it would have been too weak a decision. He thought that secular Jews differ in their approaches to religious law in that some of them agree that it is important to cite Jewish law, even if they do not follow it in their personal lives, while others feel that they should not be bound by Jewish law. The religious will always look to Jewish law for guidance, since they have studied and followed it since childhood. As to the degree to which the potential deformity of the fetus should have affected the decision of whether or not to abort the fetus in the event that Ronit died, Ronit told me that if she knew with a hundred percent certainty that the fetus was going to have birth defects, she would have had an abortion. However, she also felt that after a certain period of time an abortion should no longer be an option. For instance, she would agree to have an abortion at three months’ gestation; however, by six months, she felt that it would be like killing a baby. Ronit’s parents agreed in principle that a severely deformed fetus should not be delivered, but they did not agree on whether they believed that the fetus was going to be deformed. Ronit’s father was concerned that the baby would be born blind. He was not as concerned about the potential for lung or brain damage because the fetus was already twenty-eight weeks old. He was also concerned about who would care for a baby with serious deformities. Ronit’s husband was young and inexperienced, and Ronit’s father did not feel that he or his wife could take the baby. He therefore felt that the fetus should have been aborted if Ronit were to die. Ronit’s mother agreed that if she knew that the baby was going to be born with serious birth defects and without a mother to care for it, the doctors should have performed an abortion if Ronit were to die. However, she remembered that one of the doctors who was consulted told her that the fetus did not have any deformities. She did not remember any of the doctors mentioning the potential for serious damage to the baby’s eyes or potential blindness. Her main concern was whether the baby would be “fit to live a normal life.” In the end, the judge’s decision became moot. As if a sign from above, Ronit gave birth the night after the judge’s ruling to a healthy baby girl who did in fact suffer from a deformity. Ronit did not die but fully recuperated and went on to care for her baby and continue to live a normal life. Judge Yardin’s decision did not set a precedent that must be followed throughout the country, as Dr. Levy had hoped. Rather, it deeply affected the lives of this particular family who had to endure the hardship of watching helplessly as the lives of their loved ones spun out of their control.


Analysis

This is the first case presented in which a decision is rendered by a judge. One would initially assume that the legal system would bring a measure of consistency to what has been seen in previous cases as ambiguous and inconsistent rules regarding who has authority to make decisions and what guidelines should be followed. Yet, as this case illustrates, the ambiguities seen in the previous cases are also present here in the lack of clarity within the law itself. Further, these gaps and inconsistencies are not limited to the decision in this particular case. Rather, they seem to be endemic to all cases and legal opinions pertaining to these end-of-life decisions within Israel, as will be discussed below. The judge in this case first cites the law of Anatomy and Pathology, a law that addresses the issue of when the body of a deceased may be dissected in order to perform an autopsy or to use for research purposes in a medical school (law of Anatomy and Pathology of 1953, amended 1980). Under the provisions for restrictions, the law states: “The removal of a child from the body of a dead woman in order to enable him to live shall not be regarded as a dissection within the meaning of this Law.” Judge Yardin interpreted this section to hold that the doctors in Ronit’s case were allowed to operate on Ronit to remove the fetus in the event that she died. The problem here is that this law does not specifically address the problem in this case, i. e. whether or not the physicians have the authority to remove the fetus against the wishes of the family. Rather, it only states that such a procedure is not prohibited for the above-stated purposes. As there is no law that specifically addresses the problem in this particular case, the judge is left with a gap in the law that does not resolve the conflict. The basic question of who has the authority to decide this case—whether a judge may even make a decision and/or whether he or she may appoint a guardian to act on behalf of the fetus or whether it is a matter that must be decided by the family—is also difficult to answer according to the law. The Capacity and Guardianship law relied upon by the judge actually contradicts itself. Whereas in one section a “person” who is considered a “chasui” (one for whom a guardian may be appointed) is defined as one who exists from “. . . the completion of birth until his death” (Capacity and Guardianship law of 1962, sec. 1), which would preclude the judge from appointing a guardian for a fetus, another section of the same law states that a fetus is considered a “chasui” in the event that a person dies and there is an heir who is still a fetus. Thus, this law contradicts itself as to whether or not a fetus is a “chasui” within the meaning of the law, thus entitled to have a guardian appointed for its protection. This law has been interpreted in different ways by different judges. Although in Ronit’s case, Judge Yardin ruled that a fetus may be considered a “chasui” and that thus he had the authority to appoint a guardian to represent it, in an earlier case of In re Mamon, the judge held the opposite, stating specifically that the court lacked the authority to appoint a guardian for a fetus, and, accordingly, he dismissed the case. The leading Israel Supreme Court case that addresses the issue of whether the family of a terminally ill patient who is near the end of life may refuse medical treatment for that relative is Shefer v. State of Israel. As will be discussed below, the answer to the question raised in that case seems to be a qualified maybe in that

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no two legal scholars I interviewed agreed on what the case held. Even after I interviewed the Honorable Justice Menacham Elon, the author of the opinion, the answer was still unclear to me. In deciding this case, Justice Elon relied on the Basic Law: Human Dignity and Freedom. This basic law was meant to be part of a constitution that Israel has been trying to establish since its inception. The Declaration of the Establishment of the State of Israel originally set a date of October 1, 1948, to adopt a constitution. However, controversies soon arose regarding what should be included in such a constitution and whether a constitution should even be adopted. Such infighting ensued over this issue that the Knesset eventually agreed to a compromise resolution named the Harari Resolution. This resolution provided for the piecemeal passage of chapters, or basic laws, that would eventually be put together as a constitution (Shapiro 1983:410). Several times in Israel’s history, an attempt was made to pass a basic law on human rights. The issue was first raised in 1964 and again in 1973 and several times since then. Each time, it was tabled or sent back to committee. In some cases, the religious parties refused to accept a law whose provisions would invalidate prior legislation that discriminated on the basis of religion, race or gender. Other versions were so watered down in order to appease the opposing factions that it was pointless to try to pass them and, in some cases, may even have been detrimental to human rights. For example, one version began with a statement that a citizen was a free person unless the law stated otherwise. It went on to include a statement about Jewish law remaining in effect, which would have been to the detriment of women’s rights and equality for minorities (Sharfman 1993:160). Finally, in March of 1992, the Knesset passed two basic laws on human rights—Basic Law: Human Dignity and Freedom, and Basic Law: Freedom of Occupation. These laws were amended two years later in an effort to appease certain political forces who were opposed to the laws (Barak-Erez 1995:310, 323). The basic law on human dignity encompasses a wide range of human rights, including the right to “life, body [and] dignity,” “property,” “liberty,” the “free[dom] to leave Israel,” “privacy and. . . confidentiality,” and protection against illegal search and seizure (Kretzmer 1992:248-9). Some of these terms are quite ambiguous, and until they have been interpreted and further defined by the courts it is difficult to discern their meaning. There is much disagreement among scholars as to what rights are covered by this law and much debate about why certain rights are enumerated while others are conspicuously absent (Kretzmer 1992:246). Other terms seem vague and ambiguous. For instance, terms such as “privacy” and “confidentiality” could encompass such disparate rights as the right against illegal search and seizure, the right against government intrusion into one’s body, and the right to speak to an attorney or priest without having one’s conversation revealed. Yet, these two concepts are linked together in this law. Another problem with the new Basic Laws is whether, and to what extent, they expand the courts’ power of judicial review. Unlike the American legal system, in which the United States Supreme Court has the power to interpret laws passed by the legislature and make a determination as to whether they conflict with the Constitution, the Israeli legal system is quite different (Marbury v. Madison, 5 U.S. (1 Cranch) 137 (1803), Barak-Erez 1995:326). Under the Israeli system, Basic


Laws have two kinds of provisions: entrenched and regular. Entrenched provisions can only be amended by a special majority of the Knesset, whereas regular provisions do not have superiority over regular statutes. Therefore, any regular provision of a Basic Law can be changed by subsequent legislation. In essence, this amounts to what might be termed a qualified form of judicial review (Barak-Erez 1995:326). The Basic Law: Freedom of Occupation had a clear entrenchment provision when it was originally enacted. It specifically stated that its provisions could not be changed except by a Basic Law enacted by a majority of the Knesset members. However, the present wording of the law allows the Knesset to enact laws which infringe upon the freedom of occupation whenever the Knesset is fully aware of its decision to so infringe by expressly declaring so, though only for a limited period of time (Barak-Erez 1995:330). Thus, the law includes a formal entrenchment provision while, at the same time, allowing a special provision weakening this section of the law. As opposed to the Basic Law, Freedom of Occupation, the Basic Law: Human Dignity and Freedom does not contain an express entrenchment clause. This clause was originally considered, but, by the time the final draft was enacted, it was dropped (Kretzmer 1992:241). Thus, although the first section of this law states that the purpose of the law is to “. . . entrench in a Basic Law the values of the State of Israel as a Jewish and democratic state,” presumably based on the original wording of the law, the clear implication is that these rights are not legally entrenched. However, section 8 of the law states that the rights specified in it “shall not be infringed except by statute that befits the values of the State of Israel and is directed towards a worthy purpose, and then only to an extent that does not exceed what is necessary.” This must imply that a law that restricts one of the enumerated basic rights and does not meet the expressly stated standards should be declared invalid. Under this interpretation of the law, despite the fact that there is no entrenchment clause, legislation that conflicts with the law will be declared invalid. However, the legislature may still amend the provisions of the law without a majority of the Knesset (Kretzmer 1992:242). Another issue is what effect the two Basic Laws will have on existing legislation. Article VI, section 2 of the United States Constitution states that the Constitution is the supreme law of the land and that any law that conflicts with it is invalid. This is not the case under Israeli law. In fact, only one of the Basic Laws allows the Supreme Court to invalidate statutes that conflict with it. The Basic Law: Freedom of Occupation allows a grace period of two years for existing legislation, after which it may be reviewed by the Supreme Court. However, the Basic Law: Human Dignity and Freedom states that the law will not affect prior existing legislation (Kretzmer 1992:244-5). Another question is whether the Supreme Court’s decisions will be considered legitimate by the public and the political system and whether a shift toward allowing the Court to rule on the constitutionality of legislation will be supported. The uncertainty of this issue shows the potential fragility of the future of judicial review in Israel. Although the legal community and the public at large tend to support the Supreme Court, other powerful political forces, such as the ultra-religious, oppose it, particularly in cases in which religious issues are at stake. In fact, recently, over

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200,000 ultra-Orthodox Jews demonstrated against the Supreme Court in response to several recent decisions that have gone against their religious interpretation of the law (San Diego Union, February 15, 1999). The Shefer case which, as stated earlier, relied on the Basic Law: Human Dignity and Freedom, was the first Israel Supreme Court case to interpret the meaning of this basic law as it applied to the controversial subject of the right to die. The case involved a young child who suffered from Tay-Sachs disease, a genetically transmitted illness that causes neurological disorders and degeneration of the central nervous system. As the disease progresses, the child is subject to epileptic seizures, blindness and deafness, followed by a coma and eventually death, usually before the age of three. There is no known cure. By the time this case was brought before the Supreme Court, the child, Yael Shefer, was already unconscious and in a permanent vegetative state with no hope of recovery. Her mother requested that all medical treatment be terminated and her daughter be allowed to die. The doctor disagreed, and the case was filed in court. The Shefer case relied on two provisions within the Basic Law: Human Dignity and Freedom. Section 2, paragraph 4 of the law states: “Every person is entitled to the protection of his life, body and dignity.” In its statement of purpose, the law states that the purpose is to “. . . entrench in a Basic Law the values of the State of Israel as a Jewish and democratic state.” As I shall discuss below, both of these phrases are less than precise and subject to different and conflicting interpretations. Justice Barak, in an earlier Supreme Court case interpreting this basic law, felt that the law was meant to be interpreted in light of modern conceptions of what is meant by human dignity and freedom, stating, “The content of ‘human dignity’ will be determined according to the outlook of the enlightened public in Israel based on the background of the purpose of the Basic Law: Human Dignity and Freedom” (Vicsilebaum v The Minister of Security). Justice Elon disagreed with this interpretation of the law. Instead, he interpreted the law to require one to take into account both Jewish legal principles (taken from religious law) and democratic principles and to achieve a synthesis of the two principles (Shefer v. State of Israel). In any legal system, there are differences in interpretation of the law. The United States Supreme Court has distinguished and even modified decisions established by earlier courts. Rarely—extremely rarely—the Court has even overturned a prior precedent, but will only do so based on new evidence and drastic social changes (Brown v. Board of Education). However, there has never been such a fundamental disagreement as to whether or not an entire body of religious law may be considered a valid basis upon which to render a decision. This once again demonstrates the ambiguity within the law and, even more importantly, the ambiguity as to who has the authority to decide such matters. In Shefer, Justice Elon attempted to synthesize the two competing values in reaching his decision. According to Justice Elon, the primary principle underlying Jewish law is the sanctity of life based on the notion that God created man. This principle holds that human life is immeasurable, both as to its worth and as to its duration, and every second of human life is unique and valuable. The quality of life of a person should not be taken into account in making decisions about medical care, even if the person is in a permanent coma with no hope of recovery (Shefer, pp. 50, 76). Justice Elon further stated that since the Torah states, “Love your neighbor as


yourself” and “Do not stand idly by the blood of your neighbor,” one cannot agree to hurt another person, even if that person requests it; and, thus, a patient does not have the absolute right to refuse medical treatment (Shefer, pp. 41-45). Jewish law also forbids active euthanasia. Passive euthanasia, such as failure to resuscitate a patient who is in cardiac arrest, is only permitted in limited cases, such as when a patient is suffering and near the end of life in certain situations (Shefer, p. 61, 65-6). Justice Elon then goes on to discuss the principles of democratic law. He sees the principle of patient autonomy, the right to control one’s own body and thus to refuse medical treatment, as the primary underlying principle of democratic law (Shefer, supra at 81). This can be violated only if there is a compelling state interest. However, the laws in the United States (at the time this opinion was written) do not allow active euthanasia (Shefer, pp. 85, 91). He noted that Holland was the only democracy that allowed active euthanasia, under extremely limited circumstances (Shefer pp. 100-101). Justice Elon then went on to attempt to synthesize these two competing principles—the Jewish principle of the sanctity of human life and the democratic principle of the right of a patient to refuse medical treatment. He concluded that the outcome of this synthesis is that active euthanasia is absolutely forbidden (Shefer, p. 145). However, he then goes on to admit that it is difficult, especially in this case, to distinguish between extraordinary means of support and those meant to alleviate the child’s pain and allow her to die (Shefer, pp. 145 , 150). He then states, “The use of these or other means will be determined when the time comes and according to the child’s condition at that time. . . In these circumstances and under these conditions, the sanctity of Yael’s life, even though terminal, is the lone and determining value. Any intervention and encroachment on that life stands in direct opposition to the values of a Jewish and democratic state” (Shefer , pp. 151, 153). After rendering its decision, the Court then addressed the issue of whether the petition was properly filed, since the mother filed the suit and was not joined by the father. The Court concluded that, since the father did not join in the petition with the mother, the suit must be dismissed. Two problems arise in examining this opinion. First, one cannot discern from this opinion what conduct is allowed and what is proscribed as to when one can terminate medical treatment for a dying patient. Second, the Court is attempting to reconcile two principles that not only cannot be reconciled but actually contradict each other. As to the first issue, two legal scholars whom I interviewed gave me diametrically opposed answers to this question. According to David Frenkel, an attorney who specialized in medical legal issues and who often instructs medical students at Hadassah medical school on such issues, the Shefer case allows one to withdraw a patient from medical treatment as long as the doctors agree that there is no chance of a cure and the treatment is only prolonging the dying period. He interprets Shefer to require only that a patient’s basic needs, such as food and water, be given to prevent suffering but not heroic measures. Dr. Charles Sprung, a physician who is the chief of Intensive Care at Hadassah Hospital and is also an attorney, interprets Shefer as prohibiting the withdrawal of treatment, including the removal of a dying patient from a respirator.

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I then interviewed Justice Elon at his home. Justice Elon is a religious man who is extremely knowledgeable about Jewish law (he has written several well-known volumes on the subject). He is also an observant Jew. When I asked whether, according to his opinion in Shefer, one can disconnect a respirator, he told me that it is very hard to give a general rule. He told me that although Rabbi Halevy has written that one can disconnect a respirator in certain circumstances, there are different opinions on this point. One must decide by the circumstances of the case. As a general rule, one may distinguish between active and passive euthanasia, but it is very difficult for a court to decide these issues. He suggested that hospitals set up ethics committees so that they can judge each case on its own merits. As to the second issue, regarding the Court’s attempt to reconcile two seemingly irreconcilable principles, this case exemplifies the struggle within the legal community and Israeli society at large regarding how, or even whether, Jewish religious law should be relied upon in a democratic nation, particularly when it goes against democratic principles. It is clear in this case that the two competing principles not only cannot be reconciled but are actually in conflict. For instance, the Jewish principle that a physician has the right, and even an obligation, to save a patient’s life, even if the patient does not want to be saved, directly conflicts with the democratic principle that a patient has the right to control his or her own body. Thus, Jewish law would require the doctors to continue to treat a terminally ill patient if they determined that his or her life “still had value,” regardless of the wishes of that patient; whereas, under democratic principles, the patient would have the right to make the decision (with certain restrictions). As seen in previous cases and in the decisions cited in this case, these conflicts are decided either by attempting to reconcile the two principles and coming up with inconsistent rules or by failing to address the issue at all, thus leaving a gap in the law. Both solutions leave room for much ambiguity and inconsistency when individuals try to resolve these difficult issues. As seen in the Shefer case, no two legal scholars seem to agree on what the case allows with regard to the right to refuse medical treatment. This is not a minor point. As exemplified by this and previous cases in this study, this means that when a patient is dying and there is a difference of opinion as to whether that patient should continue to be treated, there are no clear rules or guidelines for how to resolve these fundamental differences. Why is the law so unclear? Why are these gaps and inconsistencies and even conflicts within the law, allowed to remain? Why is there such an effort to include Jewish law in these decisions, even when it is in direct conflict with other laws? The answer most likely lies in the ambivalence of the less religious toward the religious, the political and psychological influence of the more religious on the less religious, and the lack of a desire for consistency. Most of the individuals I interviewed were quite ambivalent about whether religious law should be applied in deciding these end-of-life decisions. As seen in almost every case history discussed thus far, individuals involved in the decision-making process gave inconsistent answers when asked about this issue. Sarah’s daughter Hannah felt that religious law should be applied but did not ask her rabbi for advice because she did not want to feel compelled to follow it. Fanny’s daughters both said that religious law is helpful and should be relied on in helping to decide these issues, yet they also felt that there should be a separation between


religion and state. Ronit herself expressed anger that a religious judge was allowed to make the final decision in her case; yet she spoke of how the religious laws are logical and that religious and moral issues are intertwined. The result is that there is a reluctance to pass laws that openly contradict or prohibit the use of religious law in deciding these issues, as well as a desire to refrain from offending the more religious by excluding the religious point of view. In some cases, this is resolved by including both the secular and religious law, resulting in inconsistencies. On other situations, the conflict is resolved by failing to address the issue, thus leaving a gap in the law. Part of the ambivalence of the non-religious involves a deeply held belief among many that the religious rules are more important, even implying that they should take precedence over secular laws or at least not be ignored. This is especially true when the issue involves such a sensitive subject as whether or not to terminate medical treatment for a loved one. These end-of-life decisions are extremely difficult for most individuals, and there is a strong desire to have someone else make the decision or at least provide clear guidance. There is also a great deal of guilt involved in making these decisions, as evidenced by the statements of several family members who said they felt that they were being asked to “kill” their relatives. The religious rules, which appear to be clear and unambivalent and which can be seen as relying on a higher moral authority, seem to provide the psychological support that the secular laws do not provide. As a result, even the most non-religious are reluctant to openly defy or contradict these religious rules. Furthermore, they allow the more religious to continue to have a great deal of influence in affecting the outcome of these decisions. As can be seen in both Ronit’s case and in the Supreme Court case of Shefer, the decisions were rendered by religious judges who relied more heavily on Jewish religious law than on secular law in rendering their decisions. Judge Yardin, the judge in Ronit’s case, told me that he did not think that it was sufficient merely to cite secular law to support his opinion, and therefore he brought in the Jewish law to give his decision more weight. Justice Elon told me that the most important principle in the Shefer case was the Jewish value that life is a duty and a responsibility. He felt that if there were a conflict between the Jewish and democratic values, he would have to apply the Jewish values. In neither case was there a public outcry over the use of Jewish religious law in rendering these end-of-life decisions. (Both cases generated a great deal of publicity.) Whatever feelings Israelis may harbor regarding the intrusion of the religious into these areas of law, there is still a reluctance to exclude the use of religious law from influencing these end-of-life decisions. Lastly, it appears that just as there is a reluctance to establish regular routines or procedures in the hospital setting and in Israeli society in general, so there is a reluctance to establish consistent rules and guidelines in the legal venue. As was discussed in the case of Sonya, the reaction to the unpredictability of life in Israel is to fail to establish regular routines or procedures in daily life, resulting in things being done in a haphazard manner and decided at the last moment. Similarly, in the legal setting, there is a reluctance to establish clear rules and guidelines and even a preference for allowing a certain amount of ambiguity to remain in the law. Not only does this allow issues to be decided on an ad hoc basis, which seems to be the

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preferred way of doing things, but it also serves the purpose of allowing the Knesset to avoid the irreconcilable conflicts between the religious and non-religious. In other words, they would rather live with the inconsistencies in the law than have to deal with the alternative—a vicious and potentially violent battle between the religious and the non-religious that can never be resolved.

CHAPTER EIGHT

THE INFLUENCE OF THE HOLOCAUST Sarah was born in Poland. She married her husband in 1933 and moved to Mexico with him. When World War II broke out and she realized that her family was in danger, she tried to obtain Mexican visas to get them out of Poland. She was able to obtain only one visa. Her brother was married and had a young child and therefore needed three visas to help his family flee. Thus, Sarah’s unmarried sister was given the only visa. Sarah’s daughter Hannah was born in 1935. Over the next few years, her mother and aunt continued to hope for the safety of their family, despite the stories they heard about what was happening back in Poland. However, when Hannah was eight years old, her mother received a letter informing her that her family back in Poland had been killed. Sarah lost her mother, father, brother, cousins, aunts and uncles—every living relative except for her sister whom she had managed to save. Hannah grew up with no grandparents and with a sense of rootlessness, knowing that they were the only surviving members of their family. Sarah grieved for her family but was comforted by her ability to save herself and one family member. Sarah’s sister lived with the guilt of knowing that she was given the only visa while the remainder of her family in Poland perished. Reuel Bronstein lived in Poland with his wife and two children. As was commonly done in the “old country,” his family remained behind in Poland while he went to America in order to obtain a job and bring them over to join him. It was the only way a poor immigrant such as he could get a green card and earn enough money to pay for their passage. He did not anticipate the horrible events that were about to occur. World War II broke out, and he was unable to get his family out of Poland. They were all killed in the concentration camps. After the war, Reuel remarried and had nine children with his second wife. He never forgot his first family, and he never got over the guilt of being unable to save them. He would ask why he survived while they did not. He could not enjoy life. Three years before his hospitalization, during the joyous occasion of his grandson’s brit (circumcision ritual), he told his daughter that a day did not go by that he did not think about the souls of his dead family. When the ninety-year-old Reuel clung tenaciously to life month after month, one of his daughters mused that perhaps he was afraid to meet the souls of his dead family when he died. Rivka Rubenstein was a fourteen-year-old girl living with her family in a small town in Rumania near the Russian border. The Germans’ invasion came suddenly in a Blitzkrieg. Many family members were reluctant to flee despite the stories they had been hearing about the treatment of the Jews at German hands. They argued that the Germans had not bothered them in the last war and that they would rather die in their own homes than become refugees. One day, the Russians came and told them that they were planning to blow up the only bridge that would allow them to flee into Russia. They had to flee that night or remain at the mercy of the Germans.



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Rivka’s parents were reluctant to leave, especially since they would have to leave their elderly parents behind. Rivka and her brother begged them to go. Her parents finally agreed to flee. The rest of their family who remained behind—parents, aunts, uncles, cousins and others—died in concentration camps. Naomi Barak’s family is from Holland. Her parents were teenagers during World War II. One day, her father went for a haircut, and, when he returned home, he discovered that his parents had been taken away by the Nazis. He immediately went into hiding. For a while, he and Naomi’s mother were hidden by farmers. When he became ill, they told him that they could no longer hide him. Naomi’s mother agreed to leave with him and care for him. They traveled from place to place trying to hide from the Nazis who had occupied their country. They somehow managed to survive the war. Naomi’s aunt was on a train bound for Auschwitz. She managed to jump off the train and hide out in the woods. Two uncles were sent to Bergen-Belsen concentration camp. One survived. He held his brother in his arms as his brother died of starvation. Naomi’s grandparents and all other relatives died in the concentration camps as well. Naomi remembers growing up in Holland and having nightmares about the Germans. To her, living in Holland was quite depressing as everything reminded her of the war and the family’s losses. Her mother became manic depressive and spent a great deal of time in mental institutions. Naomi was named after one of her grandmothers who was killed by the Nazis. She feels a special bond with that grandmother. She also feels guilty about what happened to her family. When she was eighteen years old, Naomi moved to Israel. She and her husband, who is a rabbi, have five children. It is important to her to have her children grow up in Israel because she feels that it is a free country, they have food to eat, and they do not have to worry about being persecuted. They are able to help others and be a part of building a country that they can call their own. Amichai Jaffe is a respected professor at Hebrew University. His wife Shira is an artist. They are both from Holland. Amichai was two years old when his parents were sent away to a concentration camp by the Nazis. Before she left, Amichai’s mother managed to give her baby to a sympathetic Christian family to hide for her. She and her husband never returned. Amichais uncle was the only surviving member of the family. After the war, he tried to obtain custody of his nephew, but the Christian family had grown to love the child and thought of him as their own. A custody battle ensued. Amichai eventually went to live with his uncle but remained close to his foster parents throughout his life. Amichai’s wife Shira also grew up in Holland before immigrating to Israel. She and her mother had light hair and eyes and did not look Jewish, and the false identifications that her mother obtained allowed them to “pass” as Christians during the war. Her father was not so lucky. His appearance gave him away as being Jewish. He worked for the underground resistance and tried to hide out as best he could. Shira’s mother was unable to save her husband. He was eventually caught and sent to a concentration camp, where he died. April 23, 1998, was Yom Hashoah, Holocaust Memorial Day. The day was commemorated throughout the country. Israeli television channels broadcast only Holocaust-related programs for twenty-four hours. At 10:00 a.m. on that day, a horn

THE INFLUENCE OF THE HOLOCAUST 93

was blown for one minute, and everyone throughout the country observed a minute of silence. I was in the hospital at the time. Every individual—doctors, nurses, orderlies, visitors and patients who were able to— stood silently for one minute of remembrance. Later in the day, while waiting for my next interview, I sat in the hospital lounge absent mindedly glancing at a television program in which holocaust survivors were recalling their experiences during the war. I noticed an elderly patient seated next to me in the lounge and began conversing with her. She told me that she was from Germany and was the only surviving member of her family. At my daughter’s elementary school, the children were told to come to class wearing black and white. As they entered the school, they heard solemn music being played, and an exhibit had been set up at the school’s entrance. The exhibit consisted of six candles burning, a huge poster of children being led off to concentration camps, and several books with gruesome pictures of the concentration camps for the children to peruse. (The school taught students in first through sixth grade.) The children participated in a ceremony in which a memorial service was held and the names of children who were killed in the camps were read. These are just a few of the myriad of stories and incidents that came up during the course of my research. Over and over again, while interviewing subjects about supposedly unrelated events, their stories of the Holocaust and the war kept coming up. I noted that practically every Ashkenazic Jewish Israeli I interviewed had a story that connected him or her in an intimate and personal way with the Holocaust. Almost all had lost most of their families during the war. They had observed horrible scenes of violence and degradation, or they had managed to flee and only later learned of the horrors that had occurred. Most had had to flee their homes and live as refugees or managed to hide out during the war, living hand to mouth and constantly fearing being discovered or starving to death. I came to believe that these extraordinary events, occurring a relatively short time ago and shared by such a large portion of the population, profoundly affect how Israelis view end-of-life decisions. As I shall discuss below, the effect is both individual and communal. One issue that came up repeatedly was that since the Nazis had put a value on human life, deciding whose life was worth living and whose was not, it was dangerous for anyone to make such value judgments about the life of another. Thus, nobody has the right to decide that another’s life is not worth living, regardless of the quality of that life. A brief review of the history of the development and carrying out of Hitler’s policies that eventually led to mechanized and widespread killing sheds light on this subject. The process began by setting a theoretical framework—using respected scientists and educated men, including medical doctors, geneticists, psychiatrists, anthropologists, evolutionists and others—for the notion that certain races as well as certain individuals within races (such as the mentally or physically ill) were inherently inferior. These scientists believed that the whole of human history was a part of the biological evolution described by Darwin in the animal kingdom. They saw it as their duty to demand the prevention of procreation by these inferior races and inferior individuals within their own race (Muller-Hill, 1988:7, 75). This theory developed into a set of increasingly restrictive laws and policies prohibiting intermarriage and, eventually, any contact between the races and those within a particular race deemed to be “inferior.” The next logical step to come in

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1933 was the “law for the prevention of progeny with hereditary defects,” which allowed for compulsory sterilization of those deemed to be mentally defective (Lifton, 1986:22, Muller-Hill, 1988:10). This progressed to an edict by Hitler in 1939 allowing “mercy killing” for patients deemed incurable. The carrying out of this edict involved sending out questionnaires to various hospitals and nursing homes to locate patients who fit the criteria. It was done without the knowledge or consent of the patients or their families. The Nazi term for these individuals was lebensunwertes Leben, or “life unworthy of living.” (Mitscherlich, 1949:91-2).

The killing of mental patients was the next step in this process of selective killing of those deemed undesirable. Between 1939 and 1941, over 100,000 people deemed to have “incurable” mental disorders were systematically killed in a highly efficient and orderly manner. An instruction sheet was sent to the mental hospitals and other institutions that housed the mentally ill. This form was filled out by the appropriate supervisors and included specific criteria, such as those who had been continuously institutionalized for at least five years or those diagnosed with epilepsy or schizophrenia. Children as young as one year old were included in the list of those marked for death. It also included those who were not necessarily severely disturbed and were in good physical condition. The killing off of these “undesirables” began with simple neglect and starvation and progressed to the administration of lethal injection. The Nazis then went on to the more efficient method of killing by gas (Mitscherlich, 1949: 93-98; Muller-Hill, 1988:12-39; Lifton, 1986:221). There is a direct connection between the killing of these mental patients, deemed as “incurable” and “undesirable,” and the wholesale murder and genocide perpetrated at the concentration camps. First, the efficient method of killing large numbers by means of gassing was developed for the killing of the mental patients and was later applied to those at the concentration camps. Second, physicians who were involved in the earlier program, mostly psychiatrists, were send directly to the concentration camps to “select” inmates deemed mentally ill to be marked for extermination. These selections soon came to include anyone who was sick, debilitated, or Jewish. Thus, not only was the original concept of weeding out the undesirable extended and the net cast further to include an ever increasing number of categories, but it went on to include racial classifications as well in the category of those deemed “unworthy of life.” This inclusion of a racial category was allowed and even given an air of scientific validity by those respected scientists and theoreticians who supported the theory of racial inferiority based on the Darwinian model. Lastly, when the “euthanasia” program involving the mentally ill was officially ended in 1941, key personnel involved in the program were sent to occupied Poland to establish and administer the extermination camps. For instance, the first commander of Treblinka, the largest extermination camp, was Dr. Imfried Eberl, who had been a participant in the earlier program (Lifton 86:220-224). What is also interesting is the medicalization and the extensive participation of medical doctors in the entire killing process, from beginning to end. As soon as the inmates arrived at the camps, they were forced to line up in order to be inspected by the camp doctor. This doctor made a determination of whether the person was capable of working and, thus, allowed to live, or was to be marked for death (Lifton, 1986:192; Lifton, 1986: 215-216). I believe that this chilling image of a doctor,


imbued with the authority of a medical license, using his skills to decide whose life was worth living and whose was not, knowing that he was sending little children, old women, the sick, the debilitated, and anyone else deemed “unworthy” to a swift and immediate death, has a more profound influence on how Israelis make end-of-life decisions than any other image from the Holocaust. The physician’s job did not end there. From the initial selection, the doctor would be driven in an SS vehicle, usually marked with a red cross, along with a medical technician, to the gas chambers. There, the doctor had the supervisory responsibility to carry out the process and then to pronounce those inside dead. At other times, the doctors were sent into the bunkers to “thin out” the ranks and make room for newer, healthier inmates who were about to arrive (Lifton, 1986:214-217). This shows the great efforts that were made to legitimize the process by deeming it medically necessary. What effect does this have on the making of end-of-life decisions in Israel? In a country where such a large segment of the population has been affected in such a profound way by an event so recent in history, its greatest effect is that people do not want to make any decisions that would be construed as placing a value on an existing life. This means that no matter how sick the patient may be, no matter how little chance there may be for his or her recovery, there is an extreme reluctance to make a decision that would end the person’s life. This pattern is seen in case after case that has been described herein. Aharon Golan’s condition was clearly hopeless, yet the doctors continued to treat him aggressively, knowing full well that he would not recover. Reuel Bronstein was ninety years old and was seriously and permanently brain damaged, yet nobody would consider removing him from the respirator. In fact, I observed one geriatric hospital in Israel which had an entire ward of patients who were in the advanced stages of senile dementia, in a persistent vegetative state, who were fed via a feeding tube and treated with antibiotics when they developed an infection. These patients lived in this condition for an average of two to five years. Several individuals in Israel, including well-known Jewish medical ethicists and respected physicians, spoke of the danger of avoiding the “slippery slope,” meaning that once one starts to make judgments about who should live and who should die, whose life is worthwhile and whose is not, the potential to go too far, as did the Nazis, will always be present. Thus, one should not start to make such judgments because of this potential danger (Steinberg, Avraham, Medical Ethics conference, Van Leer Institute, Jerusalem, January 7, 1998). Another Holocaust-related theme that came up repeatedly was that nobody intervened to try to stop the killing of Jews. Thus, many believe that Jews can only rely on other Jews to save them in times of distress. For instance, when I asked Esther what relevance, if any, the Holocaust had in these cases, she told me that it taught her that the rest of the world was willing to sit back and allow the Nazis to slaughter the Jews. This meant that Jews could rely only on other Jews to come to their aid when their lives were in danger. In terms of its effect on end-of-life decisions, this understanding results in people’s striving to do all they can to save a patient, no matter how hopeless the situation, because Jews have an obligation to help one another, especially in times of distress.

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A recent case involving the refusal of Israel to extradite an American teenager back to the United States to face murder charges shows the depth of feelings involved in this belief that Jews can only rely on each other because Gentiles could not be trusted. In the Sheinbein case, a Jewish teenager accused of a brutal slaying in Maryland fled to Israel in order to avoid trial. He claimed that he had Israeli citizenship by virtue of his father’s having been born in Israel prior to leaving the country in the 1950’s to emigrate to the United States. Although Israel has an extradition treaty with the United States, the Israel Supreme Court ruled that another law, passed at the urging of then-Prime Minister Menachem Begin, who felt that Jews should never be handed over to Gentiles for judgment, took precedence over the extradition law. Thus, the Court blocked the boy’s extradition (San Diego Union Tribune, February 26, 1999). This again shows the reiteration of the theme that Jews must help one another and should not trust non-Jews, who sat back and allowed the Nazis to exterminate their loved ones. In relation to how the lessons of the Holocaust affect modern day medical decisions, Dr. Shimon Glick, a noted Israeli medical ethicist, wrote:

The biblical admonition, ‘Do not stand idly by your friend’s blood’ creates an imperative for extensive involvement in the affairs of others, for their benefit—more so than is generally accepted in the West. In addition, the concept of mutual responsibility among Jews has been clearly articulated: ‘All Jews are responsible for each other’s deeds.’ Furthermore, the trauma of the Holocaust, whose survivors abound in Israel, is often remembered in terms of the failure of the nations of the world to take action to prevent the death and suffering of others. These are a few factors that, I believe, contribute to the Israeli ethos, which calls into question a policy of nonintervention when human life is at stake (Glick, 1997:955).

In this article, Dr. Glick discussed a case in which an Israeli court ordered the force feeding of a prisoner who was on a hunger strike. Glick argued that it is not enough merely to save the life of an individual who is asking for help. One is also obligated to help the person whose life can be saved but who does not want help or even asks to be left alone. Two related themes are intertwined here. First, the idea that Jews cannot rely on outsiders to help them and, therefore, are obliged to help each other is clearly related to the lesson of the Holocaust. However, this theme is taken a step further in that Jews are deemed to have an obligation to help one another even if the person needing help does not ask for it or specifically rejects the help. In cases involving end-of-life decisions, physicians often believe that they are not only obligated to save the lives of their patients, but that they must do so even if the family, or the patient himself, specifically asks to be left alone or allowed to die. The impact of the Holocaust affects Israelis on an individual level as well. The most profound effect I observed was the problem of guilt felt by those who managed to survive but lost many or most of their close relatives in the concentration camps. This was most poignant in the case of Reuel Bronstein, whose family interpreted his tenacious clinging to life as a sign that he felt so guilty about the death of his family and his inability to save them that he was actually afraid to die and have to face them in the afterlife. Similarly, in Sarah’s case, her sister lived with the ever-present guilt


of having received the only available visa, resulting in the death of the family she had to leave behind. Phyllis Palgi, writing about the role of physicians in Israeli society, recalls the story of an older Israeli doctor who had survived Auschwitz and returned to work in his hospital in Poland. Another ex-inmate was brought to the hospital with terrible stomach pains, which he believed required an operation. The head of the department disagreed, and the next day the patient died. This doctor felt a terrible sense of guilt at having allowed this fellow inmate to die. He felt that, if he had been more forceful, he could have saved the man’s life. Fifty years later, he still carried the guilt of this man’s death (Palgi, 1996:252). The most direct result of these strong guilt feelings seemed to be the desire to continue to treat patients who were near the end of life, even if they could not be saved, in order to make up for those who perished in the Holocaust whom they were helpless to save. I observed this in the case of Dr. Greenberg, the cardiologist who was most insistent that Aharon Golan continue to be treated, long after other physicians admitted that he was beyond help. Dr. Greenberg had lost ninety percent of his family in the Holocaust. Later, when his mother was dying of cancer in Israel, he again felt a sense of helplessness, and anger toward her doctors, as he watched her die. Although there may have been other factors unique to Dr. Greenberg of which I was not aware, the impact of the Holocaust and his feelings of guilt and helplessness can be seen as a contributing factor in his refusal to give up hope for saving this patient. Israel is seen as a metaphor for rebirth, as rising up from the ashes of the Holocaust to regenerate the Jewish people. The loss of six million Jews, almost a third of the world’s Jewish population, left many with a desire to regenerate Jewish life. Those who had lost a significant portion of their families felt an even stronger need to rebuild and repopulate their families and the Jewish community. The connection between the tremendous losses suffered in the Holocaust and the establishment of a new Jewish homeland is significant. As Naomi put in explaining why she wanted her children to grow up in Israel, Israel is seen as a place where Jewish life can flourish, where children can grow up in a free country, not having to worry about being persecuted. It is seen as a place where they can be part of building a country that they can call their own. In a very real sense, it is seen as the salvation of the Jewish people after their near destruction at the hands of the Nazis. Even those who survived the Holocaust and moved to Israel, only to lose their children on the battlefield, tried to find meaning in the loss of their children. As one mother whose entire family had been killed by the Nazis put it when told that her son had been killed in battle, “At least this son of mine died while fighting and as a free person” (Palgi, 1973:33). The symbolism inherent in Holocaust memorial day, why the particular date was chosen, and its juxtaposition with Israel Independence Day, is significant. Holocaust Day is seven days before Israel Independence Day, the traditional period of mourning in the Jewish religion. The day chosen is the anniversary of the Warsaw Ghetto uprising, thus symbolizing Jewish resistance against the Nazis (Deshen, 1995:81-85; Krausz, 1985:206-208). This is meant to convey the idea of Jews as fighting for survival to the bitter end rather than the other symbol of the Holocaust that could have been chosen, of innocent people being led to their deaths

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like lambs being led to the slaughter. Thus, Israel wants to project the image of the strong Jew who is willing to fight and sacrifice everything in order to survive. Similarly, Yad Vashem, the national museum of and memorial to the Holocaust, was built on land that abuts Hertzl military cemetery. Yad Vashem is slightly downhill from the cemetery and sits in its shadow. This was not a coincidence. Rather, the two were placed side by side so as to symbolize the rising up of the state of Israel from the depths of the Holocaust and the connection between the two (Deshen 1995:85). When end-of-life decisions are being made in hospitals, this theme of Israel as a place to rebuild and regenerate Jewish life plays a crucial role. There is a reluctance to give up on any patient, no matter how hopeless the case may be, since every life is sacred and helps to make up for those lost in the Holocaust. Furthermore, Israel is seen as a place where one is able to fight and stand up for one’s fellow Jews. Thus, it is difficult to allow even a single life to slip away. As Palgi describes it, “. . . the most salient feature of the ideal image of the Israeli doctor is that of a hero fighting for the survival of the other” (Palgi, 1996:255). In this sense, the metaphor of Israel as a place of rebirth, as a country where every life replaces one that is lost so that all life is sacred, makes it difficult to admit defeat and allow even a single patient to die. As Chaim Herzog, then president of Israel, put it in a speech made at Bergen-Belsen concentration camp:

. . . You bequeathed to our people the precept of life, the imperative of existence; to ensure that never again would the Jew be a helpless victim, and that never again would Holocaust and destruction be the fate of Israel. You bequeathed a testament to build the future of the Jewish people in its homeland, proud and free. A people strong in its moral right and its moral force no less than in its ability to defend itself; a people that arose from the ashes of the Holocaust to a constructive, creative new life. . . (Herzog, 1996:315).

Lastly, the unemotional detachment of modern technology from the human consequences, as was practiced by the Nazis, is intensely avoided by many Israelis in the medical profession. Whereas the Nazi scientists were able to develop and use complex gassing devices to annihilate innocent lives without thinking about how their technological advances were being used, Israeli doctors were more likely to allow emotions and their sense of humanity to govern their actions, at times even superceding their professional role and technical expertise. Just as Dr. Mizan, the physician in charge of Aharon Golan could not let go of her patient because of her feelings for him and his family, despite her awareness of the futility of the situation, so others would permit themselves to allow their emotions, their need to empathize with their patients and the families, to take precedence over their professional judgment of the situation. I do not mean to suggest that Israeli doctors overcompensated for the crimes of the Nazis by allowing emotion to cloud their judgment. Quite the contrary. Oftentimes, I observed a degree of caring and emotional involvement between patients and their families and the medical staff that resulted in a greater sensitivity to the needs of the family and, thus, better medical care. I observed a young doctor brought to tears, with no feeling of embarrassment or negative judgment by others, at the loss of a young patient; yet she was a highly intelligent and competent


physician. It is not for me to judge how emotionally involved a physician should be in caring for a patient. Rather, I observe that this greater degree of emotionality is allowed to occur and seems to be strongly related to the lessons of the Holocaust. The whole idea of the medicalized aspect of the Nazi killing, the notion of allowing one’s medical knowledge that is meant to be utilized to better humanity and to save lives to be used instead to kill innocent people sends a chilling message to those most affected by it. The image of a doctor not only calmly overseeing a plan of genocide but actively participating in the process without shedding a tear for the loss of lives or stopping to consider the horror of his acts is so unbearable that medical personnel in Israel tend to be reluctant to ignore the emotional feeling they may develop for their patients or make medical decisions based purely on technological information. I did not observe this phenomenon being universally applied among Israeli doctors. In fact, many Israeli physicians were quite comfortable to remain aloof and distant from their patients or to make decisions based strictly on the medical facts presented. However, there is a greater tendency and an acceptance of those who choose to allow their emotions to affect their decisions. As was seen in the case of Aharon Golan, although not all of the physicians became emotionally involved in the case, those who did were not criticized by their colleagues nor prohibited from entering into the decision-making process. Professor Mayer Brezis, a friend and mentor of mine at Hadassah Hospital who is both a caring and highly competent physician, once showed me a plaque on his wall that read, “Give us the capacity to see the positive in others and not just the negative and be able to talk to everyone in the right way and not with hatred.” He explained to me that it was written by a rabbi from Lishonsk, Poland, who lived two hundred years ago. When he went to Poland to visit the concentration camps with his son’s class, he realized that the Nazis felt the opposite—that others’ values had no worth to them. This meant that the lesson one should learn from the Holocaust was that one should never forget the humanity of one’s patients. Professor Brezis told me that there is a tension between the ability to understand the mechanics of medicine and the capacity to be humane. Invasive doctors may have great technological skill, but they must not use them at the expense of caring and emotionality. To him, this is the lesson that one should learn from the Holocaust.

CHAPTER NINE

CONCLUSION My project was an examination of the interrelationship among the cultural understandings of law, of medicine, and all the sets of understandings, or shared beliefs, that are found to have an influence on what decisions are made and what actions are taken with respect to end-of-life decisions. I purposely chose an issue that involves an emotionally challenging and psychologically difficult situation in which individuals are forced to make decisions that affect the life and/or quality of life of someone close to them. My aim in choosing to study this issue was to understand how people function in making decisions and what factors most affect them when they are confronted with deciding a matter that touches upon their most basic beliefs and values. In this way, I hoped to better understand the influence of these shared cultural understandings on the decision-making process. I have presented six cases that best illustrate the types of issues that commonly arose when end-of-life decisions were made. Since many of the issues relate directly to the influence of the Holocaust, I included a separate chapter on that particular subject. From these cases, I hoped to present for the reader as full a picture as possible of what actually transpired when these difficult decisions were made—what types of issues arose, who was given the greatest authority, what conflicts arose and how they were resolved, what feelings were evoked and how these feelings were incorporated into the decision-making process. My aim was to go beyond the individual cases in order to learn something about how Israeli society functions and what it can teach us about the human condition. More specifically, I wanted to explore what we can learn about how humans make decisions, especially very grave ones, and how people are affected by their social ties, beliefs and values. In this final chapter, I shall address these issues. Several patterns have emerged from the cases that affect or explain how Israelis view end-of-life decisions and how these decisions are made. The most influential and pervasive of these patterns are:

1. A general agreement that religion should be allowed to play some role in the decision-making process, but much confusion and ambivalence over exactly what role it should be allowed to play; 2. a tension between making decisions based purely on the medical evidence versus allowing one’s emotions to enter into the decision-making process, giving great leeway to allowing feelings and emotional attachments to a patient to dominate the process; 3. a common ideal expressed by many that one should never give up hope, regardless of the hopelessness of the situation; and 4. a general reluctance to establish or follow rules or routines.

In Part A of my conclusion, I shall discuss these influences and explain what values and beliefs are shared by Israelis and how they affect the decision-making



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process. In Part B, I shall discuss how they developed, why they are shared by most Israelis and what can be learned from their general applicability.

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PART A: INFLUENCES AND BELIEFS AND THEIR EFFECT ON THE DECISION-MAKING PROCESS

I. The influence of religion

Most Israelis whom I interviewed expressed a great deal of ambivalence about what role religion should play in influencing how end-of-life decisions are made. Many expressed resentment over how much control they felt that the religious, who are a small minority of the population, had in affecting how end-of-life decisions are made. Yet they also expressed positive feelings about Jewish laws and values and felt that they were relevant and helpful when it came to making such decisions. For example, Ronit told me that moral and religious decisions should go together and that religious laws should be considered when making such decisions; however, she also felt that the religious influence in Israel was a big problem and that religion should be kept separate from government. Ruth, told me that she agreed with the Jewish principle that life is sacred and felt that this religious ideal in Israel was a good influence; however, she also felt that religion should be kept separate from government and that the religious have too much influence. Her sister Maya agreed that the Jewish ideal that it is wrong to take a life and that one should always maintain hope should play a role in the decision-making process but that it’s “disastrous” to commingle religion and government. All of these individuals described themselves as not very religious. All of them expressed resentment over the amount of influence that the religious have in Israel, yet they all saw some benefit to allowing religious laws to play some role in the decision-making process. Even those who described themselves as religious expressed a great deal of ambivalence about what role religion should play in influencing these decisions. Hannah, who described herself as religious and observant (although not ultra-Orthodox) expressed agreement with the religious principle that life is sacred, that it is up to God to decide when a person should die, and that, therefore, one should not end a life prematurely. She also felt that religion and law should not be separated because religion provides a moral basis for the law and keeps Israelis united as Jews. However, she also admitted to me that she did not consult a rabbi as to what to do in her mother’s case because she was afraid that he would tell her to prolong her mother’s life, despite the suffering it would cause, and she would then be compelled to follow his advice. Similarly, Esther described herself as an observant (i. e. Orthodox) Jew. She felt that Jewish laws and rituals made sense and were well-thought-out. However, she also told me that she does not consider herself to be religious in that she is not a “strong believer in anything” and is an agnostic. She conforms to religious rules primarily for social reasons, such as keeping a kosher home so that her children can eat in her house and she can invite religious friends to dine with her. The common thread among all of these individuals, whether or not they describe themselves as religious, is that they express some degree of ambivalence about the value of the religious laws and the role they should be allowed to play in influencing

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end-of-life decisions. They all feel that there is some value to the religious rules, that they should play some role in influencing how end-of-life decisions are made, but that their authority should be curtailed or limited in some way. This ambivalence has three main effects on the role that religion is allowed to play. First, it discourages those who disagree with the religious rules or feel ambivalent about them from voicing their opinion. Secondly, it gives greater authority to those who are more religious and want to see religious laws applied to these situations. Lastly, it precludes or discourages the establishment of rules or guidelines for governing how these decisions are made. Many individuals who may disagree with some or all of the religious rules are reluctant to voice their opinion or disagree with the more religious because they either feel ambivalent about the role that religion should be allowed to play or are afraid of violating the religious precepts. For instance, Hannah felt that her dying mother should not have been given a feeding tube. She was also quite concerned about how much her mother was suffering. Yet when one of the doctors decided to insert a feeding tube into her mother, Hannah was reluctant to speak up and disagree with the doctor. Instead, she quietly acquiesced in the doctor’s decision. Although Hannah wanted to avoid seeking a formal religious ruling, her ambivalence about the applicability of the religious rules caused her to hesitate in openly disagreeing with the doctor’s decision. This reluctance to speak out or disagree with the enforcement of religious rules is further influenced by conformity to social pressure in that individuals do not want to be perceived by others as uncaring or disrespectful of their relatives. Thus, it is easier to conform to social pressure and allow one’s relative to remain alive, despite one’s ambivalent feelings about the futility of the situation, than to be viewed by others as “giving up too soon” on a loved one. One informant told me that all Israelis, no matter how non-religious they are, observe the mourning custom of sitting shiva for seven days after a close relative has died. By not conforming to social custom, one risks the danger of being thought of by others as not showing the proper respect for a deceased loved one. Thus, it is easier to follow the religious rules than to ignore them and risk the criticism of others, especially if one also feels ambivalent about the importance of these rules. The ambivalent feelings toward the religious rules also have the effect of giving greater authority to those who are more religious and want to see the religious laws applied to end-of-life decisions. While the secular rules on these issues can be unclear or nonexistent, the religious rules provide clear, straightforward answers. When a judge issued a legal ruling on Ronit’s case as to whether or not a family had the right to decide whether to allow her fetus to die, the judge could find only one secular law, which did not even address the issue directly. However, he was able to cite several religious laws that answered the issues raised in the case. This allows those who are more religious to dominate the decision-making process, and it is difficult for those who are less religious to disagree with them, especially if the less religious are ambivalent about their feelings. Lastly, the ambivalent feelings toward the role of religion in the decision-making process makes it difficult to establish regular rules or guidelines for deciding these issues. In a setting in which individuals feel that religion has something to offer and should be considered in making end-of-life decisions, yet resent the influence and

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control that the religious have in these cases, it is extremely difficult to establish guidelines that can be agreed upon. In addition, there is a vocal and politically powerful religious minority who would object to the establishment of rules or guidelines that do not fully comport with their religious beliefs. Such guidelines would be strenuously objected to by the less religious. Thus, it is easier to refrain from establishing rules than to contend with the myriad of disagreements that such rules would engender. One factor that contributes to the ambivalent feelings about the role that religion should play in these end-of-life decisions is that Israelis are ambivalent about what it means to be Jewish and to be a Jew living in a Jewish homeland. “Jewishness” is seen as a crucial factor in defining the Israeli national character and is a pervasive part of Israeli society. It is a strong unifying factor, despite the wide variations in practices and the non-religious nature of many Israelis. No matter how different Israelis may be from one another, their sense of solidarity from a common religious affiliation is very powerful. This sense of Jewishness is also seen in a larger framework of holding certain values, traditions and orientations that are difficult to define. It is a different type of Jewish identity than in the past and in other countries, where one was a Jew in relation to the majority non-Jewish population. Yet how does one define these values and beliefs, especially in a country where there is such ambivalence about what role religion should play in the daily lives of citizens and such divergent opinions about what authority it should be given? As will be discussed below, there are many ways to define what it means to be a Jew and to explain what motivates one to live in a Jewish state, especially if an individual does not consider him or herself to be religious. Does it go by one’s birth? one’s citizenship in the state of Israel? Does one have an obligation to obey the religious laws and rituals? Israelis cannot agree on how to define it or what meaning to give the religious rules. Yet they agree that Jewishness is an important part of their identity as Israelis. Thus, there is much ambivalence and disagreement over what role religion should play in their lives. There are several religious values that affect Israelis’ understandings of when life should end and who should decide. The most important and influential of these values is that life is sacred, no matter what the quality of one’s life and no matter how much time one has left to live. As Rabbi Jacobovitz contended, even a child who is comatose for many years, with severe brain damage and no chance of recovery, has meaning to his life, and it is morally and religiously wrong to terminate any life, no matter what the quality of that life may be. When there is a conflict between this religious view that life is sacred and the democratic principle that one has a right to control one’s own body, the religious view holds that it is more important to save a life, regardless of the wishes of the patient or his or her family. It is not up to an individual to take his or her own life, or to “give up” on life. Thus, even when an individual expresses a clear wish to be allowed to die, the religious view is that others must still continue to treat him or her and allow him or her to die. As was seen in the case of Sonya, who clearly stated prior to entering the hospital that she did not want any “heroic” measures taken to save her, the doctor’s view that one should not be allowed to “starve” to death took precedence over the wishes of the patient and her daughter. Similarly, the Israeli

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Supreme Court in the case of State v. Shefer, upheld the religious principle that the sacredness of life takes precedence over all other principles. A related concept that is based in religious values is that death is seen as something to fight against and resist, rather than placidly accept. As was seen in several of the cases, the religious view is that one must do everything possible to avoid or hold off death, regardless of the hopelessness of the situation. In the case of Moshe, a ceremony was performed in which the patient’s name was changed in order to “fool” God into taking someone else when it came time for him to die. In the Bronstein case, even though he had virtually no chance to recover, his children continued to take turns praying fervently by his bedside and making sure that he received proper medical care. In another case I observed involving an ultra-Orthodox family, even after a young woman was declared to be brain dead (the family did not consider her dead, as her heart was still beating), the family called in a religious mystic to try to awaken her. This religious value of never giving up on life and resisting death to the very end has a strong effect on how people view end-of-life decisions. Lastly, there is a belief that there is a purpose to suffering and that a patient’s suffering should not be considered a factor in deciding whether to terminate medical treatment for one who is terminally ill and near the end of life. This value is not universally recognized, and there are many religious experts who strongly disagree with its weight. Many religious people whom I interviewed felt that religiously one may consider the amount of suffering a patient is enduring in making a decision of whether to allow him or her to die. In fact, there is religious authority to support this view. However, other religious individuals I interviewed felt that there is a point to suffering, that someone may have to suffer in order to get into heaven or to atone for certain sins. This idea was not universally accepted. However, it did influence how decisions were made in that a patient’s suffering was not always considered or was given less weight in making end-of-life decisions. These religious views, although not universally held or believed by all, strongly influence how end-of-life decisions are made. Those who are religious do not want to violate the religious laws. The less religious may feel ambivalent about them; and, although they might not agree with them, they are reluctant to violate these laws or principles. Religious values and rules thus play an important role in influencing and affecting how such decisions are made.

II. The person expressing the most emotions should be allowed to decide

Physicians must make difficult decisions. They must sometimes decide to refrain from treating a hopeless case or to allow a young patient to die. However difficult these decisions may be, it is a part of their job. In a setting in which there are clear rules or guidelines for when to desist in treating a dying patient, a doctor may be forced to put aside his or her feelings and make a decision based on the medical evidence. However, in a setting in which such rules are less clear or non-existent, other factors may play a role in the making of such difficult decisions such a whether to allow a patient whose condition is hopeless to die. One such factor that is allowed to affect these decisions in the Israeli setting is the emotional attachment of the doctor or decision maker to the patient. In fact, the person who expresses the

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strongest emotional attachment to the patient seems to be given greater authority to make decisions for the patient, regardless of that person’s relationship to the patient. In the case of Aharon, the young patient who was kept alive despite his having virtually no chance of recovery, those physicians who had the greatest emotional investment in the case seemed to be given greater authority to make the medical decisions. Dr. Mizan, the resident who served as his primary care physician, was quite open about her emotional feelings towards this patient. She talked of how emotionally exhausting this case was for her and how much she felt for the family. She told me that “we look too hard for logical reasons to let people die” and that she felt for the family and found it hard to tell them that his situation was hopeless. When various decisions needed to be made as to how to proceed with his care, Dr. Mizan was allowed to overrule several other doctors and insist that his treatment be continued. When an orthopedic specialist was called in and strongly advised against amputating his leg based on the medical evidence, Dr. Mizan overruled his opinion and insisted that the doctor operate on him. When a nephrologist was called in and asked to perform dialysis on his failing kidneys, he also suggested that it was pointless to perform such an invasive procedure on a dying patient. Again, Dr. Mizan was able to overrule this specialist and insist that they perform dialysis on him. Dr. Mizan was a competent physician who was aware of the futility of the situation and the hopelessness of his case. She even admitted to me that her decisions were based more on her emotional reaction to this young patient than on sound medical evidence. Yet she was given wide latitude by the other doctors and allowed to make the decisions in this case. There also was no stigma attached to Dr. Mizan’s use of emotionality by others in the hospital setting. Other doctors seemed to be aware of how emotionally involved she had become with this patient, yet none of them criticized her or thought less of her abilities as a doctor. Rather, she was perceived as a caring and compassionate doctor who was doing what she felt was best for her patient. Although many doctors and nurses disagreed in principle with the idea of unnecessarily prolonging a dying patient’s life, nobody seemed to disagree with the idea of allowing an emotionally involved physician to make such medical decisions based more on her feelings for and attachment to the patient than on the medical evidence. It is also interesting to note that cost was never considered as a factor in deciding whether or not to end medical treatment for Aharon. Dr. Mizan even went as far as to state, “Even if [a patient] has zero chance of recovery, why not treat them? So what if it takes times and money.” While it is true that in Israel the government pays for the vast majority of medical costs, including long term care, so that families are not burdened with financial concerns, nobody whom I interviewed seemed to consider cost to be a factor in making medical decisions. Rather, the shared understanding was that one should not put a dollar value on human life and that it is in some way morally wrong to take cost into consideration in making medical decisions. Later in the case, when even Dr. Mizan had given up hope and agreed to allow a do-not-resuscitate order to be written on his chart, another doctor, Dr. Hebron, made a decision, on her own, to revive Aharon when he went into cardiac arrest, thereby overriding the decision made by the previous doctors and instead substituting her

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own judgment. This doctor’s decision was clearly made on the basis of her emotional reaction to the patient. She was fully aware that he had a do-not-resuscitate order written on his chart and that his condition was hopeless—that he truly could not be saved. Yet she told me that she could not bring herself to let go when she saw how young he was and noticed a picture that his young daughter had drawn for him pasted on the wall. She was in tears and literally had to be pulled off the patient so as to allow the patient to die. Weeks later, when I interviewed her about the case, she again began to cry as she recollected his death. This doctor did not regret her decision. She told me that she hopes that she never becomes so hardened that she is unable to feel for a patient who is about to die. What is most interesting about this incident is not the reactions of the individual physicians but the tacit approval of the other physicians in allowing her to make such a decision and in not criticizing her for her actions. Although the chief attending physician was aware that there was a do-not-resuscitate order on this patient and the fact that his condition was hopeless, when this young doctor came to him and told him that she felt compelled to try to revive him, he did not try to stop her. Rather, he allowed her to override the orders of the previous doctors because he knew that she felt emotional about this patient, and he was concerned that she would feel bad if she were not allowed to try. Later, when I interviewed him, he did not criticize Dr. Hebron for allowing her emotions to dominate her decision or for ignoring the medical reality of the situation. Rather, he felt that she was a caring and competent doctor who did what she thought was best for the patient. Other doctors who were aware of the incident agreed that Dr. Hebron was a good and caring physician. They did not seem troubled by her actions, nor did they criticize her as being hysterical or unprofessional. Rather, she was viewed as a competent physician who did was she felt was in the best interests of the patient. Furthermore, nobody was upset that Dr. Hebron had unilaterally overruled the previous do-not-resuscitate order that had been agreed upon by the other doctors involved in his care.

Although they did not inform the family about this incident (when I later interviewed Aharon’s widow, she was unaware that an attempt had been made to revive him), Dr. Hebron’s status in the hospital was not diminished by her open display of emotionality. In another case not presented in earlier chapters, a young Palestinian boy named Omar was in a coma and a written do-not-resuscitate order was on his chart due to the severity of his condition and the fact that, if he were to go into cardiac arrest, it would indicate that his condition had deteriorated and he could not be saved. The chief physician told me that although the other doctors had agreed to do-not-resuscitate him at an earlier point in his treatment, they agreed to hold off due to the objections of Dr. Gliman, the resident in charge of his case. It was only after the patient developed severe sepsis that they overruled her and issued the order. However, Dr. Gliman, the resident who was Omar’s primary physician, told me that, if he were to go into cardiac arrest, she intended to revive him, despite the written orders on his chart. She was quite open about her intentions and did not try to hide them from the head of the department who had issued the original orders. She told me that, although she was aware of the logic of not reviving him should his condition deteriorate, she was influenced by her feelings for him and her attachment

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to him. She knew that there was a 100% failure rate for resuscitating patients who go into cardiac arrest due to sepsis. However, she still intended to try. (Several months later, when Omar was returned to the hospital due to his deteriorating condition and there was a chance that he would not survive, she admitted to me that she perhaps should have acted differently and not tried so hard to keep him alive.) Once again, this doctor made a decision based on her own emotional reaction that was incompatible with the medical evidence and that went against a previous decision of other doctors on the case. Yet she was not chastised or condemned by the other doctors for her actions. Rather, she was perceived as a caring and competent doctor who made decisions that she felt were in the best interests of her patients, even if they were based more on emotions than on sound medical knowledge. Another factor that supports and is closely related to this commonly held belief that it is acceptable to allow emotion to enter into the decision-making process is the feeling that everyone is considered to be family. This idea was repeatedly expressed to me and seemed to allow those who would normally be considered a stranger to the patient and his or her family to behave as if they were members of the patient’s family, thus allowing their feelings and emotions to affect their judgments. The idea expressed to me was that to a certain extent all Israelis, and to a lesser extent all Jews, were somehow related, either because they were all part of the same small, cohesive group or because they actually were related in some way. Some expressed this idea in terms of the obligation of all Israelis to help each other and to protect each other against the hostile outside world that had allowed them to be persecuted. Others felt that since Israel was such a small country made up of individuals from the same small ethnic group, one never knows if the patient who is brought into the hospital is actually related to the care givers in some way. Dr. Mizan told me that “It (Israel) is a small country, so everyone knows everyone else. So you can be working on someone and it turns out you know their family or are distantly related.” On that same case, Dr. Klein, who was the chief of the intensive care department at another branch of Hadassah Hospital, agreed to consult on the case because he was the neighbor of the father’s sister-in-law. This feeling of connectedness to one another, of relating to each patient as if he or she were a potential family member, reinforces the idea of allowing one’s emotions to dominate the decision-making process and granting authority to make decisions to those who express the strongest emotional connection to the patient. One is supposed to “care” and become emotionally involved with a patient who is a member of one’s family; thus, by placing the patient in the role of potential family member, the physician and medical personnel are encouraged or allowed to become emotionally involved in the patient’s condition without experiencing negative reactions from others. This was seen in the case of Aharon, in which Dr. Hebron, the physician who could not bring herself to allow him to die when he went into cardiac arrest, talked about this patient whom she had never met as if she were speaking about an uncle or close relative. Other physicians seemed to support her actions and certainly did not criticize her for reacting to the patient in such a manner. Furthermore, a familial connection causes one to view the patient in a different light, to become more reluctant to let go or to provide extra comfort and care to the patient and his or her family. Thus, those who show great emotion toward a patient and

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even allow their emotions to dominate over logic and reason in making medical decisions are not viewed as incompetent doctors but as deeply concerned individuals who are willing to become emotionally invested in the care of their patients.

III. Refusal to give up hope

Caring for patients who are terminally ill or near the end of life often requires one to maintain a difficult balance between providing the best or most aggressive care possible, knowing that the chance of recovery is extremely unlikely, and accepting the inevitability of death. As the patient’s prognosis dims and the medical condition worsens, the logical response, especially for one with medical knowledge and less of an emotional connection to the patient, would be to adjust one’s expectations and act accordingly. Everyone, whether doctor, family member or friend, draws the line between maintaining hope and accepting reality at a different point. Factors such as one’s relationship with the patient, one’s preconceived ideas about the role that medicine should play, and one’s feelings about less tangible beliefs such as what role religion and spirituality should play in such situations will affect one’s actions and expectations. But what does it mean when a commonly held belief is that one should never give up hope, no matter how hopeless the situation? Why do so many Israelis, including physicians, react this way to end-of-life situations, and how does it affect the care and treatment of dying patients? In several of the cases that I observed, there was an unwillingness to give up hope, no matter how hopeless the situation seemed to be. In the case of Moshe, for example, everyone admitted that his chances of recovery were extremely slim. Some doctors said that there had never been a documented case of someone recovering from such a state. Others described his case as “hopeless.” Yet nobody suggested that they desist from treating him or allow him to die. Many doctors told Esther that there was little or no chance of recovery, but none of them proposed that his treatment be stopped or curtailed. Similarly, in Aharon’s case, although some physicians who were peripheral to his care suggested that he not be treated as aggressively (such as performing a leg amputation or dialysis), many doctors continued to treat him long after they admitted to me and to themselves that he had virtually no chance of recovery. One cardiologist told me that although he knew that Aharon’s chances of recovery were one in 5,000, according to his assessment of Aharon’s condition, he continued to revive him every time Aharon’s heart stopped and did not feel it was appropriate to treat him less aggressively. Another woman whom I interviewed told me that her husband was suffering from end-stage Alzheimer’s disease and had been hospitalized in a comatose condition for eight years. Not only was he given nutrition and water through a feeding tube, but he was also treated with antibiotics when he developed a flu and given vitamin supplements on a regular basis to keep him healthy. In fact, Bracha’s husband was not the only patient in this condition who was treated so aggressively. In the geriatric hospital where he was being treated, I observed an entire ward of patients who were comatose, in the end stages of senile dementia, with virtually no chance of recovery, who were provided with similar treatment. The physician in

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charge of the ward told me that most patients survived for two to five years in this condition before they finally die. In the Bronstein case, Reuel was ninety years old, in a coma, and known to have suffered severe brain damage. Yet by the time I left the country, he had remained on a respirator, with no sign of improvement, for many months. The doctors told me that they intended to keep him on the respirator until his heart gave out. In fact, they told me of a similar case of an elderly woman with virtually no chance of recovery who was kept on a respirator on their hospital ward for two years before her heart stopped and she was removed from the respirator. Once again, the cost of treatment, even the astronomical cost of maintaining a comatose patient in the hospital on a respirator for such a prolonged period of time, was never considered as a factor in making medical decisions. As can be seen in the cases presented herein, this idea of never giving up hope has a profound affect on how end-of-life decisions are made. Many Israelis, including many physicians, are extremely reluctant to let go of patients whom they know have little or no hope of recovery. The shared understanding is that one should never give up hope, no matter how hopeless the situation seems to be. It is the feeling that nobody should ever give up on a single life and that to do so is to turn one’s back on one’s people or surrender to a greater force that is out to destroy one’s people. As one Israeli put it, “Hope is sometimes all we had as Jews. If we gave up hoping every time the situation seemed hopeless, we would have nothing.” The result is that doctors are reluctant to admit that a patient can no longer be helped and should be allowed to die. Rather, one must continue to fight and hope for a miracle, no matter how hopeless the situation may be. This idea that one should never give up hope is also related to the influence of religion in that there is a religious view, which many are either directly influenced by or reluctant to express disagreement with, that life is God-given and sacred and that it is wrong to give up hope and allow an individual to die. As will be discussed below, this religious influence has a profound effect on people’s understandings of how end-of-life decisions should be made; yet there is also a great deal of ambivalence about exactly what role it should be allowed to play.

IV. Lack of routinization

After I had been conducting my research in Israel for a number of months, I became concerned that I had not been able to discern a pattern of how end-of-life decisions were being made. It seemed that there were no set guidelines, either written or unwritten, nor established patterns of behavior for how decisions were made or who had the authority to make them. In one case, a decision was made by the primary physician, with little or no input from the family. In another case, the family’s opinion was ignored, but there was much disagreement over which doctor had the authority to decide. In still another case, a nurse was allowed to intervene in the decision-making process. In some cases, a physician would write a do-not-resuscitate order on a patient’s chart and the order was followed by other physicians.

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In other cases, a similar order was simply ignored by a subsequent doctor who felt differently about the patient or who felt a compelling reason to override the orders of the first doctor. I finally came to realize that the pattern that emerged was a lack of pattern. In other words, what these cases show is that there are no set rules or regulations for how end-of-life decisions should be made. There were no guidelines, or even informal rules, as to when a do-not-resuscitate order should be given to a patient. There were no set criteria for who had the authority to make such medical decisions. There was much ambiguity over what constituted unnecessary treatment or “heroic” measures. And there were no negative consequences for violating or ignoring a prior order established by another doctor. In the case of Aharon, the physicians acknowledged that he had little or no chance of recovery. Yet there was much disagreement among them over whether they should continue to treat him and how aggressively he should be treated. Dr. Mizan felt that he should be treated aggressively, despite his extremely poor prognosis. The orthopedist called in to amputate his leg strongly disagreed. Dr. Greenberg felt that they should have continued to treat him even after most of the other physicians had agreed to a do-not-resuscitate order. There were no written guidelines or policies to guide these doctors or senior physicians charged with making the final decision. Rather, the decision to stop treating him and issue a do-not-resuscitate order was made after most of his primary physicians agreed to it and the family did not object. Even after a written order was put in Aharon’s file, the doctor on call the night he died decided to ignore the order and proceeded to try to resuscitate him. She was never reprimanded or criticized by the other doctors for disobeying the written order. There seemed to be a general agreement that her reason for going against the order—that she felt a strong emotional attachment to the patient—was sufficient to allow her to do so. In the case of Sarah, the physicians agreed to abide by the patient’s wishes that no heroic measures be used to try to prolong her life; however, there was no agreement among the doctors as to what the term “heroic measures” constituted. One doctor interpreted it to include the insertion of a feeding tube; another did not. One doctor allowed the daughter to interpret the meaning of her mother’s wishes; another did not. Even after one doctor made a decision not to insert a feeding tube, the next doctor assigned to the case ignored the order of the first doctor and proceeded to do so. At one point, when a nurse was asked to perform the procedure, she informed the doctor that, if she could not insert it the first time, she would refuse to try again, as she disagreed with the doctor and felt that it was wrong to insert the feeding tube. The doctor agreed to abide by her wishes. In another case that was reported to me, a nurse told me of a case in which she was able to override the decision of the doctor because she strongly believed that he was making an improper decision. In that case, a doctor on night duty wanted to revive a terminally ill cancer patient, and the nurse was able to stop him. This further illustrates the lack of clarity and consistency as to who has the authority to make decisions regarding a patient’s care and treatment.

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In another case, a seventeen-year-old Palestinian boy went into a coma after suffering from a seizure. He had been in the coma for several months and had other underlying physical problems. He could not function without the use of a respirator and feeding tube. The chief attending physician wrote a do-not-resuscitate order on his chart, reasoning that if he were to go into cardiac arrest it would mean that his condition had worsened and his situation was futile. However, the resident assigned to the case told me that she had special feelings for the patient and intended to revive him, despite the written order on his chart. (He eventually came out of the coma but did not fully recuperate and returned to the hospital many times. By the time I left the country, his condition had deteriorated, but he was still alive.) The policy in one hospital, according to the hospital’s director, was that a respirator should be removed from a patient after the brain death committee makes a determination that the patient is brain dead. Yet when a patient in this hospital was determined to be brain dead but the family strongly objected to removing her from the respirator, her primary physician agreed to abide by the family’s wishes. Not all doctors agreed with him. The neurologist on the case argued with him and felt that they were merely maintaining a corpse. Other doctors at that hospital told me that they would have simply announced to the family that the patient had died without discussing the issue of what criteria they were using to determine death. This doctor made a decision to allow the wishes of the family to prevail over the hospital’s rules. Yet none of the other doctors criticized him for it. What also became clear from these cases was that there is a reluctance to establish set rules or policies. Those involved in the decision-making process, including the physicians and other medical personnel, as well as family members, preferred to allow decisions to be made on a case-by-case basis and did not seem troubled by the lack of uniformity in the process. My research of the legal issues revealed that the laws pertaining to these end-of-life decisions are as unclear as are the hospital rules. This was best illustrated by the case of Ronit in that the laws applied by the judge were either unclear, had gaps, or contained conflicts on crucial issues. The Law of Anatomy and Pathology cited in that case as the only secular law that attempted to address the issue of whether the family could refuse to allow the doctors to remove the fetus in the event that Ronit died did not directly answer the question. Rather, it dealt with the issue of whether removing a fetus from a dead woman constituted a dissection for purposes of performing an autopsy (Law of Anatomy and Pathology of 1953, amended 1980). This leaves a gap in the law as to the questions raised in Ronit’s case. Similarly, the guardianship law failed to answer whether a guardian could be appointed for the benefit of Ronit’s fetus, as the law contradicted itself as to whether or not a fetus constituted a “chasui,” or person entitled to the protection of a guardian (Capacity and Guardianship law of 1962). Thus, both the issue of whether the court had jurisdiction in this matter (by virtue of its authority to appoint a guardian) and the issue of whether, once the court obtained jurisdiction, it should grant decision-making authority to the family were not settled by the law. This confusion in the law was not limited to the issues raised by Ronit’s case. Rather, I found it to be endemic of the legal system as a whole, particularly as to the laws pertaining to the issues raised herein. The case of Shefer v. State of Israel, the leading Israeli Supreme Court case addressing the issue of a family’s right to refuse

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medical treatment for a dying patient, failed to answer the basic question addressed by the case. Thus, legal experts could not agree as to whether or not the law allowed families to refuse such treatment. Furthermore, the Shefer case demonstrates the basic disagreement as to whether or not Jewish or democratic law should be applied and what weight should be given to each. As described in Ronit’s case, Justice Elon attempted to synthesize the two competing sets of laws which in reality could not be synthesized. This further illustrates lack of clarity as to which laws should apply to a particular situation and what the law does or does not allow. Israel’s lack of a constitution is further evidence of the lack of clear rules and uncertainty within its legal system. The purpose of a constitution is to set forth the fundamental laws and principles upon which country is founded: what it stands for as a country, how it organizes itself as a cohesive unit, and who is given authority to make certain fundamental decisions. It defines the principles that form the basis of a government or legal system. It sets forth the rules and principles by which individuals within that society have agreed to live, what principles are most important to them, to whom they want to give authority, and how they desire to function as a people. The inability, or lack of desire, to agree upon such a basic document further proves the pervasiveness of this lack of uniformity within the legal system. One consequence of Israel’s lack of a constitution is that the authority of the Supreme Court to make or enforce laws or even to maintain its supremacy over other lawmaking bodies with respect to the authority of enforcing its own decisions is precarious. For instance, even the Basic Laws, that are ostensibly deemed to have constitutional stature, do not grant the Supreme Court the ultimate authority to determine the scope and meaning of these laws without interference from or the possibility of being overturned by the Knesset, or legislature. (One Basic Law contains a clause that allows the Knesset to overrule a decision of the Supreme Court by a majority of its members, the other Basic law does not even contain such a provision.) This basic lack of agreement as to who has the ultimate decision-making authority is endemic to the legal system in Israel. This general reluctance to establish regular rules or routines seems to be endemic to Israeli society as a whole. As the examples enumerated in the case of Sarah show, there seems to be a lack of a desire to establish regular procedures for getting things done or organizing life. Just as schools do not have regular procedures for providing parents with necessary information and supermarkets may not have regular hours of operation during many holidays, so hospitals are reluctant to establish regular rules or guidelines for making certain decisions. This means that the lack of routinization is not confined to the hospital setting but is reflective of how Israeli society functions. Furthermore, there seems to be a preference among Israelis not to establish regular routines. Rather, people seem to prefer their system of allowing things to be done or decided on an ad hoc basis, despite the potential inconvenience and frustration inherent in such a system. The recognition and understanding of this fundamental preference among Israelis is crucial to understanding how and why end-of-life decisions are made.

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PART B: BELIEFS AND INFLUENCES: AN ANALYSIS OF HOW AND WHY THEY DEVELOPED AND WHAT IMPLICATIONS WE CAN DERIVE FROM

THIS

Two questions arise that bear directly on the issues I have raised thus far: how do individuals manage to function within a group setting, and what effect does living in a such a group, or society, have on the individuals within that setting? When we can explain these two problems, then we can understand how Israelis function in making these end-of-life decisions and why they share certain basic beliefs related to making such decisions. As to the question of how individuals within a particular group manage to function, Swartz has defined culture as “all the understandings that are socially learned and transmitted and that are shared by two or more actors who consider themselves to belong to some common grouping” (Swartz 1991:7). This definition involves both psychological and social elements in that although the basic unit of culture exists in people’s minds, the fact that it is shared and influenced by interaction with others makes it social as well (Swartz 1991:5). The basic premise here is that since individuals organize themselves into groups or units, they must somehow manage to function within a group setting. If individuals did not share some common or implicit understandings about how their society should function, there would be no predictability to their lives, and thus they could not exist as a group. Thus, the aim here is to explain how the group manages to function. In order to explain how culture functions and, more specifically, how it functions in relation to making end-of-life decisions, I must first define some terms that are crucial to understanding what is involved in making these decisions, what parts the various actors play, and how they relate to one another. Statuses are instruments for bringing shared culture into a particular situation. Individuals belong to a particular status, or statuses, that affect their behavior, understandings and expectations (Swartz 1991:6). A person’s status connotes his position within the culture relative to others and categorizes the actor in differential relationships with others. One can occupy more than one status at the same time, such as the status of doctor, friend and particular ethnic group. Statuses influence behavior because of people’s commitments to the social relations. Assigning ourselves and others to statuses makes it possible for us to know in a very broad way what is or is not going to happen. In order for a person’s status to affect behavior, certain understandings are necessary in order to know who belongs to which status and how others believe they will act. Identifiers tell us in which status an individual should be placed. For instance, one who wears a white lab coat, stethoscope around his or her neck, and talks to hospital patients in a certain way may be identified as a physician. This becomes somewhat more confusing when the identifiers are less clear. For instance, during the Nazi reign, one who was forced to wear a yellow star could be easily

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identified as a Jew; whereas one who had blond hair and blue eyes but was born of a Jewish parent would be more difficult to place in such a status. Every person fits into several statuses and individuals can be easily recognized as being in them by people who share the parts of culture that provide identifiers for them. It is also necessary for those who are interacting with others to decide which of all the statuses to which people belong are the one or ones that matter for the particular situation. Salience understandings tell us which status we are reacting to in a particular situation. For instance, one may be identified as both a doctor and a religious person. It would then be a matter of salience to determine how one should interact with or view the particular doctor. This would be an issue of salience that is more often decided by a combination of physician expectations and religious person expectations being combined. Lastly, expectations are necessary for predicting how persons in a particular status will act and react. Expectations denote what an individual will or will not do in a given situation. Thus, one would usually expect a rabbi to provide comfort and prayer to a sick relative but would not expect him or her to administer medicine. (In fact, in Israel, certain rabbis do give medical advice; however, one may argue that these rabbis hold a dual status of “rabbi” and “one who, although not a doctor, has greater knowledge of medicine than the average citizen and is competent to provide such advice.”) Israelis have a shared understanding that being Jewish is an important unifying factor that binds them together as a people. It defines who they are and why they established a homeland. In fact, 94% of Israelis who were polled stated that they “took pride in being Jewish,” and 96% felt a strong connection to fellow Jews around the World (Liebman 1997:30). No matter how different Israelis may be from one another, no matter what their country of origin may have been or how different their religious practices are, their sense of solidarity, of what makes them a unified people with a common purpose, is their connection to their Jewishness. Yet there are sharp divisions among the population over what this means and what effect it should have on how their country is run. One problem is that there is a lack of agreement over how to define and delineate the status of Jew. There are several competing and conflicting identifiers and expectations. One may argue that Jewishness is defined by one’s birth. However, there are conflicts over which parent must be Jewish in determining the child’s status. (For instance, there are Russians who were allowed to immigrate to Israel because their father was Jewish, Yet had to go through a conversion process after arriving because their mother was not Jewish.) Nationality cannot be exclusively used, as there are Jews living all over the World with different nationalities. There are Ethiopian Jews, whose religious practices and beliefs were so different from those already living in Israel prior to their arrival that some argued that they should be required to “convert” to Judaism. Does Judaism fall under the status of religion, nationality, ethnic group, or some combination? It is not just that the status of being Jewish cannot fit neatly into one or more statuses. There is much disagreement over which of these statuses should be included and how they should be determined. Assuming that one holds the status of a Jew, how does one then decide what expectations to assign to the status? Some believe that all Jews must obey all Jewish rituals and laws. There is much disagreement over which rules must be followed

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and how stringently they must be obeyed. Still others argue that there is no such obligation and that one’s expectations are met merely by living in Israel and identifying oneself as a Jew. Even though there is much disagreement over how to define the status of Jewishness, all agree that it is the primary unifying force that binds them together as a people. It is seen as a pervasive and integral part of Israeli society, despite the wide variations in practices and the non-religious nature of many, if not most, Israelis. Even immigrants who first arrive in the country seem to have a sense of Jewish affiliation with their new society. No matter how different they are from each other, their sense of bonding from common religious affiliation is very powerful. This is also reinforced by the external threats that surround them (Weingrod 1965:38). Thus, not only do they see themselves as united by virtue of their Jewishness, but they also define their identity in terms of how they believe others see them and in opposition to others who hold the status of “non-Jew.” This sense of unity that attaches so strongly to their affiliation as Jews contributes to their ambivalent feelings about the religious rules and laws in that even Israelis who are not religious and even resent the influence of the religious still feel a sense of unity, a common bond, with the religious. Furthermore, although they may resent the religious, they also feel a certain attachment to those rules and rituals that to a certain extent are seen as defining the religion. Thus, although 88% of Israelis stated that one can be a “good Jew” without being observant, they still look to religious tradition in their rhetoric and symbols. Furthermore, many view the Orthodox Jewish presence in public life as maintaining the Jewish character of the nation. They also view the need for unity as a reason to allow the Orthodox a certain degree of control and authority in many situations. For instance, the Orthodox are allowed to maintain control over marriage and family law issues under the guise of “unity of the Jewish people” which would presumably be jeopardized by extending legal recognition to non-Orthodox rabbis (Liebman 1997:105; Benavides 1989:126). This is further complicated by the view among many of the less religious that the religious are in some way correct and therefore are keeping the tradition for the less religious. As one scholar has put it, “. . . if Israelis do not go to synagogue, it is still primarily to an Orthodox one that they do not go” (Benavides 1989:123). This ambivalence over the role that religion should play in the lives of individuals helps to explain the complexity of the religious influence over end-of-life decisions and why the non-religious are so affected and influenced by the more religious. As seen in several of the cases, the less religious are extremely reluctant to openly disagree with the views of the religious and may even feel, on some level, that they hold the correct answer. Thus, as seen in the case of Ronit, although she identifies herself as non-religious and strongly resented the decision of the religious judge, she still felt, on some level, that the religious laws were moral and relevant to the issues decided in her case. Interestingly, the more religious also express much ambivalence over the religious rules but for different reasons. Whereas the less religious may openly resent the authority of the religious while still ceding them a great degree of power, many of the more religious believe that they are obligated to follow the religious rules and believe them to be correct and moral, yet they still feel on some level that

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it should not be applied to their particular case. The outcome is that, although they may disagree with the particular application of the religious laws to their particular case, they are reluctant to contradict those who are more religious and cede authority to them. Thus, although Hannah, who described herself as religious but felt that the application of the rules to her mother’s situation would cause her mother to suffer needlessly, was reluctant to contradict the doctor who insisted on inserting a feeding tube into her dying mother. Many of the original Zionists who first conceived of the idea of establishing a Jewish homeland in Israel had a socialist orientation and did not consider themselves to be religious Jews. They envisioned the establishment of a liberal democratic state with socialist overtones and did not want to perpetuate the traditional religious Jewish society that existed in many places in Europe at the time. Yet their aim was to establish a Jewish state with a collective Jewish identity in a collective Jewish environment. They purposely chose Israel, the historical and spiritual center of Judaism, the country that most connected them to their past and to the ancient biblical tradition of a promise of the land to the people from the deity, to establish their homeland (Eisenstadt 1985:83-87; Gluckman 1971:xiii-xx). (At one point, it was suggested that the Jewish homeland be established somewhere in Uganda, but this proposal was overwhelmingly rejected (Laqueur 1972:122-29). This Zionist vision was a stark contrast to certain ultra-Orthodox groups who immigrated to Israel, whose primary connection to the land was religious. These people saw their presence in the land in strictly religious terms. They rejected any attempts to create a democratic/socialist society and believed that any Jewish state established in Israel should be governed by strict religious rules as interpreted by themselves. They further rejected the establishment of any Jewish state which would include secular laws and principles, which they saw as antithetical to the true purpose of having a Jewish homeland in Israel (Eisenstadt 1985:116-19, 365-6). This fundamental and seemingly irreconcilable conflict in ideology between the more secular Zionists and the ultra-religious groups was at least superficially resolved by either compromise and bargaining or by agreeing to allow certain issues to remain unresolved. Thus, the religious were granted authority over certain legal venues, such as family and marital law, while the less religious proceeded to establish a westernized, democratic form of government. However, when tensions between the two groups threatened to cause irreconcilable rifts in government, the issues were left unresolved (Horowitz 1989:59-64). For instance, as was discussed in previous chapters, Israel has never been able to form a constitution, nor has there been a formal, legal resolution of when religious law may be considered and what to do when there is a conflict between religious and secular laws. As the Shefer case aptly demonstrates, there is still an effort to reconcile these two oftentimes irreconcilable sets of laws—the religious and the secular/democratic. Furthermore, the ultimate issue that was to be resolved in the case—whether a patient may refuse medical treatment when he or she is near the end of life and has no hope of recovery—was simply left unresolved rather than take a chance on offending either side in this controversy. Similarly, in the hospital setting, conflicts in ideology that would greatly offend a particular group are simply left unresolved. Thus, there are no rules or guidelines for when to issue do-not-resuscitate orders or whether this issue should be decided

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by the physician or the family. As one hospital director told me, “We can’t have a written hospital policy (on do-not-resuscitate orders). There are too many cultural and religious differences. We couldn’t write a policy that everyone would agree with.” Rather than risk offending a particular group or trying to reach a compromise between parties with such extremely diverse views, the hospital simply chose not to establish any rules. (One rather absurd attempt actually to reach a compromise was in the patients’ rights bill, in which Israel’s Knesset agreed to allow a patient who was terminally ill and near the end of life to refuse certain medical procedures that would merely prolong his or her life, but allowed a hospital committee to force the patient to accept the treatment if they determined that the patient would later change his or her mind after receiving the treatment (Siegel-Itzkovich, 1996:727). One informant called this the “Jewish mother” compromise: I’m forcing you to do this for your own good, but you’ll thank me later. This basic conflict between the various groups with extremely divergent views and ideologies and the desire not to offend or alienate any group is one explanation for the lack of uniform rules in Israel. Other explanations for this lack of routinization as a response to daily life in Israel will be discussed below. Why do Israelis hold certain common beliefs about how end-of-life decisions should be made? More specifically, why do they seem to agree that emotions should be allowed to predominate in the decision-making process and that one must never give up hope for a dying patient, no matter how futile his or her condition may appear to be? Several theories have been proposed to attempt to explain how societal beliefs are formed and why individuals living together in a particular culture tend to hold similar views in common. I shall first attempt to explain the formation of such commonly held beliefs, and I shall then discuss how the particular beliefs unique to Israelis came to be formed. Durkheim has argued that one of the main functions of a society is to provide a source of meaningful order or shared values for individuals. He terms this as “collective” or “common consciousness,” defined as, “the totality of beliefs and sentiments common to the average members of a society. . . (which) forms a determinate system with a life of its own” (Durkheim 1984:38-9). Swartz’s term for commonly held beliefs within a particular culture is “shared understandings,” which he argues are socially learned yet involve both psychological and social elements in that it exists in the individual’s mind yet is shared and influenced by interactions with others (Swartz 1991:5). Although definitionally these terms are quite similar, the aim, or starting point, for each is quite different. Durkheim’s goal is to understand what it means to be an individual living within a society, how this affects an individual, and what meaning we can assign to the effect of living in a collective environment. To him, the function of society is to provide a source of meaningful order to its individuals and conversely, this derived benefit to the individual is what guarantees solidarity or coherence within the society. Conversely, Swartz’s aim is to understand how culture functions and to describe and explain how individuals are able to function as a society. If we can both describe and comprehend how and why individuals in a group setting manage to function, remain as a group, and get along, then we can understand how culture works. Furthermore, by understanding this, we can also

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determine what effect this has on the individual within a particular group or culture, both behaviorally and psychologically. Swartz has argued that it is not necessary for there to be complete sharing in order for culture to work. In fact, most culturally shared understandings are not shared by all members of the group. Despite this incomplete sharing, culture continues to function because these shared understandings are tacitly agreed to even by those who do not completely share them (Swartz 1991:4). Spiro seems to agree that not all cultural propositions are held by all people within a society in the same way, and there is much variation in the degree to which they are internalized. He emphasizes that there are differences in the degree of internalization of cultural understandings (Spiro 1987:161-4). As to the commonly shared values mentioned above that are held by Israelis, these core values and sentiments do not seem to be merely tacitly agreed to. Rather, they are profoundly believed and internalized by most, if not all, of the individuals I interviewed. Furthermore, as I shall argue below, these understandings, or commonly held beliefs, affect the individuals’ behavior in very direct and verifiable ways. Thus, although Israelis may agree to do without rules or guidelines to regulate certain behavior regardless of whether they share the belief that lack of rules is a good thing, certain core beliefs and values are profoundly believed and shared. The acceptance of the use of emotionality in the medical decision-making process is a commonly held core belief of Israelis. In fact, it seems that the person with the strongest emotional attachment to the patient, whether that person is a physician, family member or nurse, is given the greatest authority to make decisions for the patient. As seen in the case of Aharon, both Dr. Mizan and Dr. Hebron, who expressed great concern and emotional interest in the patient, were allowed to supersede the authority of other less emotionally involved doctors who strongly disagreed with their decisions. Several factors account for this commonly shared belief. One important factor is the memory of the Holocaust. In the words of the Israeli army’s Informational Guidelines to the Commander, the Holocaust fashions “our national consciousness and the way in which we understand ourselves and the world in which we live” (Krausz 1985:206). Israelis’ perceptions of the Holocaust and the lessons that should be learned from it strongly influence this particular shared understanding. Its influence is pervasive in Israel because so many of its citizens were so directly affected by so monumental an event in recent history. Those who did not lose family members or did not have to flee their country of origin to escape death are personally acquainted with someone who did suffer such losses. Furthermore, the fact that Jews were the target of the Nazi genocide causes Israelis, whose very identity is closely tied to their collective sense of their Jewishness, to feel personally affected by this event. As discussed in the previous chapter, the shared understanding about the meaning of the Holocaust by Israelis is that it is the ultimate example of what can happen when a society allows technology to be used without considering the human consequences; when one can appreciate the advanced technology involved in inventing a killing machine without thinking about the resulting loss of innocent human lives. Thus, the commonly held belief that use of emotionality and the

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development of an emotional attachment between a doctor/medical care giver and a patient is a good thing is closely connected to their view of the Holocaust. In direct juxtaposition of the Nazi doctor calmly standing at the entrance to a concentration camp using his medical knowledge to make decisions about who should be allowed to live and who should die, and then driving to the gas chambers to render a medical opinion that individuals had been properly killed, Israeli doctors share an understanding that one should care deeply about one’s patients, that one should not practice medicine without thinking about the emotional consequences of the patient and that it is even acceptable to allow one’s emotional attachment to override one’s medical judgment. The Holocaust may also be seen as a paradigm for the condition of Israel as the only savior of the Jewish people (Krausz 1985:208). This commonly held belief among Israelis also results in the belief in the importance of emotionality and allowing one’s emotional attachment to a patient to affect one’s professional judgment. The idea is that all Israelis are part of the same family and are responsible for one another; whereas the rest of the World is indifferent, as shown in their not helping the Jews during World War II. Therefore, the lesson to be learned, as Esther put it, is that Jews/Israelis cannot rely on the rest of the world and therefore can only rely on one another. This view goes even farther. By viewing all Israelis as members of the same family, with familial obligations and concomitant familial attachments, one is allowed, and even encouraged, to form emotional attachments with patients who would normally be treated as strangers with an acceptable degree of professional detachment. As discussed above, Israelis have a strong desire for a collective identification that is integrally tied to their sense of Jewishness. This conception that they are all part of a collective family who are connected to each other by their Jewishness is a strong unifying factor for Israelis, despite their disagreements and the wide variations in practices between the religious and non-religious. This sense of collective identification as Jews further strengthens the commonly held belief that all Israelis are members of the same family and thus are allowed or encouraged to become emotionally attached to patients. Thus, rather than seeing patients as strangers when forming a doctor-patient relationship, physicians in Israel are more likely to view their patients as potential family members, such as a member of one’s extended family, who is treated different from non-related patients. Thus, patients are more likely to be viewed not only as holding the status of one who needs medical attention, but also as one who the doctor should care deeply about in the same way as one would care for an aunt or mother of a close friend. Another commonly held belief among Israelis that one should never give up hope on a patient, no matter how hopeless the situation may be, is also related in part to the perception of the Holocaust. However, there are also other influences closely related to the conception of the place of Jews in history and, more broadly, ideas about what it means to be a Jew that further enforce this idea. The memory of the Holocaust affects this idea of never giving up hope in two ways. First, there is the view that since the Nazis made decisions about whose life was worthwhile, who should live and who should die, it is wrong for anyone to put a value on human life. Thus, no matter how hopeless a situation may appear to be, no

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matter how close to death a patient may be, it is not up to the doctor to decide that his or her life is not worth saving and to give up hope on the patient. Secondly, the Holocaust led to the conception of Israel as a metaphor for rebirth, for making up for the loss of Jewish lives and for regenerating the Jewish people. There is thus a reluctance to give up on any patient, no matter how hopeless the case may be, since every life is sacred and symbolizes a replacement for a life lost in the Holocaust. In this sense, the doctor is seen as a hero fighting for the survival of the Jewish people in contrast to the Holocaust, where Jews were led helplessly to their slaughter. This commonly held belief that one should never give up hope extends beyond the conception of the Holocaust. It seems to be an inherently Jewish concept related in part to the perception of the place of Jews in history. There is a commonly held conception of history, dating back to biblical times, that Jews have always been persecuted but have remained a cohesive people, in part, because they refused to give up hope. As one informant put it, “There is a Jewish attitude of never giving up hope, the feeling that at times it’s all the Jews had. However secular they are, all Israelis are influenced by the Jewish attitude.” The idea is that from the time the Jews were expelled from their ancient homeland in the sixth century, B.C.E., through the time they lived under foreign rule throughout the world, until their eventual return to their homeland, they had to rely on hope to keep them alive, to keep them together and to keep alive the dream of returning to reclaim their land. The commonly held belief is that, even though at times things may have seemed hopeless, Jews never gave up hope and that this is what sustained them and led them back to their homeland. How does this relate to the making of medical decisions? It means that hope is a good thing and that it does work. The belief is that even if the situation may seem hopeless, one should continue to cling to hope. Thus, even when doctors believe that a patient has no hope of recovery, they are reluctant to discontinue medical treatment or allow a patient to die. As seen in the case of Moshe, in which the doctors admitted that he had practically no chance of recovery, nobody suggested that they give up hope or stop his treatment. Similarly, in the case of Aharon, many of the doctors refused to discontinue even the most aggressive treatment, even though they all admitted that he had virtually no chance of recovery. This clinging to the belief that one should never give up hope is captured in the words of a well-known and oft-cited Yiddish song that became the anthem of the Jewish resistance fighters during World War II:

Never say this is the final road for you, Though leadened skies may cover over days of blue. As the hour that we longed for is so near, Our step beats out the message—we are here! . . . (Mlotek 1983:94)

Finally, the general reluctance among Israelis to establish rules and routines greatly influences how end-of-life decisions are made. This goes beyond mere disorganization or ineptitude. Rather, it seems that Israelis actually prefer to do without rules. As discussed in several previous chapters and recounted in detail in

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the Sonya chapter, this commonly held belief among Israelis that it is better not to have rules and that the establishment of regular routines should be avoided is not limited to the hospital setting. Rather, it is pervasive through Israeli society. No matter how much confusion or disorganization this lack of rules seems to cause, Israelis continue to hold to their common belief in the preferability of not establishing rules or routines. There are several explanations to account for why Israelis share this belief in the value of not establishing regular rules or routines. It can be seen as both a reaction to their current situation and to their collective beliefs about the history of the founding of the country. Life in modern Israel can be seen as unpredictable. Since the country was first established, Israel has never had peace or a sense of security. There have been at least four major wars since its inception. As one can imagine, a full blown war disrupts every aspect of life, especially in such a small country, in which every able-bodied adult—both male under the age of fifty-five and female under the age of twenty-one—is called to active duty. This means that all schools are closed, milk may not be delivered, post offices close, supermarkets may not open, hospitals may run with only a skeletal crew, and many must give up their homes and live in bomb shelters. In essence, all normal routines necessary for a country to function must stop in order to support the war effort. One must also live with the possibility that the country could lose the war and cease to exist as a nation. The numerous terrorist attacks that Israel has been subjected to also add to the lack of predictability of life in the country. Every terrorist attack necessitates the breaking of regular routines and then reorganizing. For instance, during the year that I lived in Jerusalem, two simultaneous terrorist bombs exploded in a crowded open air market, killing or wounding numerous individuals. Immediately thereafter, nearby streets were closed, buses were rerouted, hospitals were put on call to deal with numerous medical emergencies, every person we knew watched the news reports to see if they knew any of the dead or wounded, and people tried frantically to contact their loved ones who may have been shopping at the market that day. Psychologically, the fragile illusion of a normal life was shattered, if only temporarily until the next attack. Although different from an all-out war in which the entire country must shut down, living with numerous acts of terrorism is extremely disruptive, especially in such a small country where everyone feels a collective bond with each other. The disruptiveness of admitting and absorbing into the country large numbers of immigrants on a regular basis cannot be minimized. Over 50,000 Ethiopian Jews immigrated to Israel in a relatively short time, followed by over 500,000 Russian immigrants. Each group had their own problems in adjusting to life in Israel. The Ethiopians were mostly illiterate immigrants from extremely rural environments who had to adjust to a modern urban environment. Conversely, many of the Russians came from highly educated backgrounds, including scientist, writers, and engineers, who had to cope with the lack of jobs commensurate with their abilities and training (Westheimer 1992:3; Ritsner 1993:244-250). One professor at Hebrew University told me about how they were told to prepare for an influx of students from Argentina. They began searching for individuals who understood the language and culture and who could help these students to acclimate to Israeli life. In the

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interim, the government of Russia collapsed, and 100,000 Russians entered the country, with little or no time for them to prepare for their arrival. Israelis have had to learn to cope, both psychologically and institutionally, with this constant interruption and to learn to reorganize after there has been a disruption (Lissak 1984:14-40). Their response has been to resist the establishment of regular rules and routines. Since they cannot predict whether their situation will suddenly change or their routine be broken, they prefer not to plan or organize their lives in advance so that they can more easily incorporate these major disruptions into their lives. This allows them to flow with the changes they must face rather than to experience a sense of anomie every time there is a disruption. For example, it is easier to plan a child’s birthday party at the last minute than to make arrangements in advance and have to cancel all plans because of a terrorist bombing. Thus Israelis would rather live with a degree of uncertainty and unpredictability that comes from a lack of the establishment of rules and routines than be forced to organize and then reorganize their lives to cope with the sudden and unpredictable changes that may interrupt the flow of daily life. This preference for not establishing regular routines in advance is pervasive to all aspects of Israeli society. Another reason for the commonly held belief in the preferability of not establishing regular rules and routines is a collective belief held by Israelis about the history of the founding of the country. The shared understanding is that had the Jews obeyed all of the rules established by the ruling British and by the rest of the world community, they would never have been able to create a country of their own. The belief is that it was only by breaking the rules, by encouraging illegal Jewish immigration before 1948, by importing and hiding illegal weapons, by organizing underground militia groups, that they were able to establish a country of their own. Some have defined this as an “independent” or “pioneer” spirit, but it is more than that. It is an inherent distrust and dislike of rules and a belief that rules do not need to be followed. The conception of the ideal hero of the period of the formation of the state is one who boldly defied the British laws in order to further the goals of his own people. There is the well-known story of the ship the Exodus in which the Jewish underground attempted to smuggle 4200 Jewish refugees into Palestine aboard a makeshift boat, only to be discovered and turned back to Germany by the British (Laqueur 1976:568). Another well-known story from the period of founding of the country is an incident in which members of the Jewish underground broke into Akko Prison, where the British were holding Jewish prisoners, and freed the captives (Ben-Sasson 1976:1053). These stories, which are part of the collective recollection of history, suggest that it is better not to establish rules, and it is not necessary to follow established ones. There is a problem that develops in a country where rules are not desired or respected. In order for a country to function, a rationalized system of procedures must be established. Ordinarily, one starts with generally agreed upon values—a sense of what is good and bad, or common principles that all or most citizens can agree are worthwhile and valuable. Values such as “democracy is good” or “one should be patriotic” are examples of principles that can be agreed upon by the citizenry. From these generally agreed upon values, one can establish a set of norms that dictate general and specialized behaviors. Procedures can then be established

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for carrying out day-to-day functions that allow the country to run smoothly. Ideally, these procedures should derive from and be consistent with the commonly held norms and values from which they derive. What happens, however, when there is a lack of desire to set up a rationalized system because rules are either not agreed to or not followed? The problem here is that in order for a country to function, there must be procedures, or ways of accomplishing every day tasks. However, when there is a break between the generally agreed upon values of the society and the established procedures, then these procedures, or bureaucratic rules and regulations, become arbitrary, sometimes contradictory, and oftentimes unrelated to the commonly held values that they are supposed to be carrying out. In other words, the bureaucratic rules and procedures are unconnected to the commonly held values and instead take on a meaning of their own, oftentimes making them arbitrary and confusing or permitting those in positions of least authority to wield greater power. As a result, these bureaucratic rules are often frustrating, unworkable and pointless. This discourages individuals from following the rules and instead encourages them to look for ways around them. An example of this breakdown between the higher values and the lower level regulations or procedures can be seen in the following example: When I went to apply for permission to interview families at Hadassah Hospital in Jerusalem, I was told that I had to apply for permission before the Helsinki Committee on Human Subjects. The point of this committee, I was told, was to see to it that human subjects were treated humanely and not abused or taken advantage of. I thus filled out a long and complicated ten-page application, in Hebrew, and appeared before the committee. A few weeks later, I received a letter from the committee requiring me to answer several more questions and to resubmit my original application, as I had not properly answered one of the questions. I was told by the secretary that I would then have to wait for the committee to meet again to see if they had any other questions and, thereafter, I would have to wait several more months for the Ministry of Health then to approve my application. In sheer frustration, I called the chair of the committee at home and asked him to intervene on my behalf. I was lucky enough to persuade him of the merit of my cause. He intervened on my behalf and within two days, I was granted permission to work in the hospital. What this shows is that in a system in which rules are discouraged and a rationalized system is not desired, the procedures for carrying out the rules lose their connection to the values that they are supposed to support and the system becomes arbitrary and haphazard. Not only does this lead to more bureaucracy and place more power in the hands of those who are supposed to have the least authority, but the procedures themselves become pointless and frustrating. Another factor that helps to explain why there is a lack of rules and routines in Israel is that it is a country that is composed of so many widely disparate groups with such differing opinions that cannot be reconciled. Rather than trying to reach a compromise position, which does not seem to be possible, the situation is often resolved by simply failing to establish set rules. In the hospital setting, for example, there is tremendous disagreement, particularly between the religious and secular, over when, if ever, it is acceptable to issue a do-not-resuscitate order for a dying patient. Since both sides of the issue strongly hold to such diametrically opposed

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views, and neither would agree to either compromise or abide by rules or guidelines with which they disagree, the hospital administration simply chose to do without guidelines. This resolution of powerful and unresolvable conflicts by simply failing to establish rules, guidelines or laws, thus sidestepping the potential disagreements that would ensue, is seen in every aspect of Israeli life, from the inability to form a constitution to the authority that should be given to the religious to control certain aspects of daily life. Is it contradictory to state that there is a unified Israeli identity, while at the same time such diversity of opinions that important decisions cannot be agreed upon? The answer is resoundingly no. Unity does not imply a lack of diversity. As discussed above, it is not necessary for there to be complete sharing in order for culture to work. In fact, most culturally shared understandings are not shared by all members of the group. What is important, what does show a unified identity, is how Israelis choose to resolve their differences while continuing to function as a society. In other words, while there may be many diverse opinions, there is an agreement on how these differences should be resolved. It is precisely this preference for a lack of rules, this comfort with allowing important mattes to remain unresolved, that is a defining element of Israeli culture. Whereas, in the United States, physicians would feel extremely uncomfortable working in a hospital in which there are no set guidelines to govern crucial decisions, Israeli doctors are quite comfortable functioning in such an environment. In fact, this lack of routinization is a defining element not only within the hospital setting, but in all areas of Israeli society. Decisions involving end-of-life issues by necessity tend to involve overlapping areas of jurisdiction between law, medicine and familial authority and between the religious and the secular. Examining how these decisions are made allows an exploration of how Israelis deal with problems of overlapping jurisdiction and conflicting authority. An examination of the case of Ronit is a prime example of what happens when all of these institutions are brought in to resolve such a conflict. As can be recalled, Ronit’s case involved many individuals who all felt that they had the right and the authority to make the decision as to whether her fetus should be saved in the event that she died. Each felt that he or she had the exclusive right to make the decision for Ronit and her fetus. The family felt that since they were the closest to Ronit, were most familiar with her wishes and would be most affected by the decision they should have had the exclusive authority to decide. Some of the doctors agreed that their opinion should have been given the greatest weight. The doctor felt that this was a strictly medical decision of whether the fetus would survive and whether they should take a chance that it would be seriously deformed. In his opinion, it was up to the physician to make the final decision. Since it would have been quite difficult for him to go against the express wishes of the family, he brought in a judge to support his decision. Once the judge was brought in, he looked to the law to determine whether or not he had the authority to decide (i. e. the law of guardianship to determine whether the court could appoint a guardian for the fetus, thus giving the judge the authority to decide). He found the law to be quite ambiguous on this point. In fact, although he decided to give himself jurisdiction, his decision conflicted with that of an earlier judge, who ruled that the court did not have such jurisdiction.

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The authority of religious law versus secular law was then addressed by the judge. He first brought in the hospital rabbi and allowed him to render an opinion that was considered in his ruling. Even though the family was quite secular and in fact resented the judge’s consideration of religious doctrine, it was admitted to the proceedings. The judge then based his ruling on both religious and secular law, giving greater weight to the religious law. This was allowed to happen both because the secular law was so ambiguous and did not fully address the issue and because Israeli law is unclear as to when religious law may be cited by a civil judge. This case further demonstrates the lack of rules within the legal system itself as to who should be given authority in such situations and what laws should apply. The law was unclear as to who had jurisdiction. It was unclear as to whether, legally, a family has the right to refuse certain medical treatment. It was even unclear as to which set of laws—secular or religious—should be applied in this type of case. Even the leading Supreme Court decision of Shefer leaves the issue of whether a terminally ill patient or his or her family may refuse medical treatment undecided. What this shows is that rather than risk alienating a portion of society, having certain members of society simply refuse to follow the rules or law or having to face the battle of definitively resolving the issues, Israelis simply fail to establish rules, resulting in much ambiguity and uncertainty. Lastly, an issue that is central to understanding the fundamental disagreements over how end-of-life decisions should be resolved and that best demonstrates the problem of overlapping authority and inherent inability to resolve the differences is the conflict between the right of personal autonomy and preservation of the sanctity of human life. This conflict involves religious-secular conflict and the inherently ambiguous feelings of the nonreligious toward the religious. It involves issues of authority and who should be given the right to make medical decisions for a terminally ill patient. It indirectly shows the influence of the Holocaust, the concept of never giving up hope and of allowing emotionality into the decision-making process. And lastly, it demonstrates the affect of failing to establish set rules and routines. On the one hand, one of the hallmarks of a nation that considers itself to be a democracy is the freedom it grants to the individual to maintain control over his or her own thoughts, feelings, beliefs and body. This includes the fundamental right of an individual to decide what medical treatment he or she wants to refuse. There are obvious limits to this right, such as when the individual is not competent, when the decision may affect another individual, or when a minor is involved. But the basic right to control one’s own body is a fundamental right that is central to the principles of democracy. Conversely, there is a Jewish religious principle that holds that all life is sacred and that preserving the sacredness of life takes precedence over all other principles. Thus, although a religious doctor is not allowed to drive on the Sabbath, he will break this sacred law in order to save a life. There are debates within the religious community over how far to extend this law—whether one may ever take into account the quality of a life, whether a patient’s suffering should be considered, or at what point a patient is considered dead (i. e. the debate over whether to go by brain death versus heart stoppage)—but the basic principle of importance of preserving life over all other principles is central to religious Jewish doctrine.

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As seen throughout the cases that I have described, these two principles often come into conflict and are not easily resolved. It shows the basic conflict, and inability to attain resolution, over the secular and religious laws. On the one hand, Israel considers itself to be a democracy, and thus the importance of allowing one to control one’s own body, to the point of allowing a patient the right to make decisions to refuse medical treatment near the end of life, is understood and accepted. On the other hand, they do not want to allow these secular, democratic principles to override or take precedence over the equally strong belief in the religious principles that they adhere to. As previously discussed, Israelis are quite ambivalent about what role religion should be allowed to play in their lives, particularly when it comes to making end-of-life decisions. Thus, they either accept these principles in part, are reluctant to outwardly defy them or will not disagree if another individual insists on enforcing them. Thus, Sonya did not agree with the doctor who insisted on inserting a feeding tube into her dying mother, yet she did not completely reject the religious rule and would not overtly speak out against it. Similarly, in the case of Aharon, the orthopedist who did not want to continue to treat a dying patient whom he believed could not be saved allowed the physician who refused to “give up” on him to make the final decision. As a result, the hospital is unwilling or unable to establish rules or guidelines for governing these types of situations. Thus, the religious-secular conflict continues to remain unresolved. This conflict also serves to illustrate the problem of who should be given authority to make these end-of-life decisions. As the cases demonstrate, there is no clear line of authority as to who has the right to make these decisions. Particularly in situations in which one party is religious and another is non-religious, the decision may be made by the individual who insists upon being granted authority. Other times, it is given to the person who demonstrates the strongest emotional tie to the patient. In one case I observed in which an ultra-Orthodox patient was on a respirator and was determined to be brain dead but whose heart was still functioning, it was not clear who had the right to make the decision to disconnect the respirator. The neurologist insisted that the physicians had the authority, since the patient had been pronounced dead. The family insisted that the decision was theirs, since it would violate their religious beliefs to disconnect a patient before her heart stopped. The internist stood in the middle, trying to obtain a consensus and convincing the family that there was no point in continuing to treat the patient. But the underlying problem—that the line of authority was never established—remained unresolved. Rather than establish a set hospital policy and insist that everyone follow it, the conflict was never addressed so that the problem would have to be faced yet again the next time a similar situation arose. A comparison with a recent American case illustrates the complexity of this issue. Recently, a case arose in Orlando, Florida in which a woman was shot in the spine, leaving her paralyzed from the neck down. After several months of therapy, she decided that she did not want to continue to live in that condition. She applied to a judge to have her respirator removed, knowing that it would result in her death. The judge ruled in her favor, holding that she had a right to refuse medical treatment. The respirator was removed, and she died (New York Times, May 19, 1999:A1, A16). What this case illustrates is the clear line of authority in making such decisions. The law was clear as to who had the right to decide. The woman

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was given clear authority to control what medical treatment she received, even if it resulted in her death. Although not all end-of-life issues are so clear (e. g. the controversy over assisted suicide), the law was clear as to how this situation should be resolved. Conversely, in Israel, both the law and the issue of who has decision-making authority is unclear. Thus, as seen in the case of Ronit, the law is interpreted as granting authority to the judge in one case, while in another case the judge is deemed not to have authority. It is whether the family should have a say in the matter or even whether the patient herself should have a right to make such decisions. Furthermore, it is unclear whether secular or religious laws should be applied in such situations. The influence of the Holocaust is seen in this philosophical debate between the right of patient autonomy versus preserving the sanctity of human life. Since the Holocaust is seen as representative of what can happen when someone is allowed to decide who has the right to live and who does not, to put a value on the quality of a person’s life and to judge some lives as unworthy, there is a tendency to judge all life as sacred and in need of care, no matter how hopeless the situation may be and no matter how close to death a patient may be. Thus, when balancing the right of a patient or the patient’s family to refuse medical treatment with preserving the sanctity of life, there is a predilection towards preserving life so as not to judge any life as unworthy. When this influence is factored into the debate, it makes it even more difficult to establish rules that may be perceived as allowing a patient to die. Yet a hospital cannot set rules that insist on continuing to provide medical care to every patient, no matter how futile the situation. Thus, the issue is once again allowed to remain unresolved. The idea of never giving up hope on a patient is a factor that enters into the debate as well. The idea that one should never give up hope on a patient, no matter how hopeless the situation may be, is further extended to include the idea that even if a patient or the patient’s family gives up hope, others must continue to hope and to provide medical treatment. Thus, it is more important to do all that can be done to try to save the patient than it is to respect the patient’s wishes and allow him or her to make any decision that could result in death. This idea that one has an obligation to save a patient even from himself is further fortified by the influence of the Holocaust—in that it is the obligation of Jews to save other Jews, and thus one is obligated to save a patient even from himself; and the idea that everyone is considered family, and therefore a person who would normally be considered a stranger has the right to intervene in trying to help a patient. The effect is that this basic conflict over how to treat a dying patient and what principles are most important to making decisions are never resolved. Israel is a democracy, and its citizens want to have control over such basic rights as the right to control one’s own body. Most Israelis resent the control that the religious have in their everyday lives, yet they are also quite ambivalent over what role religion should be allowed to play in their lives. Their collective identity as Jews is extremely important to them; yet they have not defined what it means to be a Jew and how one separates Jewish ethnicity from religious practice. The result is that the rules remain unclear, and every time a difficult situation arises the debate begins anew. Rather than face the battle, the fight is left for another day.

AFTERWORD

A SEVENTH LIFE IN JERUSALEM: THE CASE OF ABDUL

A Palestinian Boy is Treated by an Israeli Doctor

The aim of my research was to study Israeli culture in the context of how end-of-life decisions are made. I therefore concentrated primarily on Israeli families whose relatives were patients in the hospital. But, while conducting my research, I came into contact with several Palestinian families whose relatives were hospitalized at Hadassah Hospital on Mount Scopus. The patient population in this hospital is forty percent Palestinian. These patients are treated by Israeli physicians, and by necessity the patients, the families and the medical staff must come into close contact with one another. I therefore had the opportunity to observe firsthand these interactions and to interview several Palestinian families whose loved ones were patients on the ward where I worked. I conducted my fieldwork in Jerusalem in 1997-1998. During that time, the country was in a relatively calm state. Although there were a few incidents of violence (I was once in the open-air market two hours before a bomb went off), the situation was better than it had been in quite a while. Now, as I sit at my desk with the book completed, the situation is as desperate as it has ever been. The peace process has completely broken down, violence is at an all-time high, and all residents of the region, be they Jewish or Palestinian, seem to be experiencing a deep sense of hopelessness that the situation will ever be resolved. I keep thinking back to when I lived in Jerusalem. What could I add to the debate that could shed light on the situation or give any hope that things could improve? I then remembered one particular case that touched me. It involved a seventeen-year-old Palestinian boy who came close to death at Hadassah Hospital. His primary physician was a young Israeli woman who was just starting out in her career. Perhaps the story of one boy and one doctor can shed light on these two cultures and show what can happen when individuals come together in a life-threatening event whose importance overshadows their ethnic differences. It is for this reason that I am adding this chapter as an addendum to my work.

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THE CASE OF ABDUL

What is extraordinary about this case is that it is not extraordinary. It is like any other case in which a patient is brought to a hospital to be treated. It is about a doctor who seemed to become so attached to her patient that she would not follow a do-not-resuscitate order, even against the medical advice of others. It is about older brothers who stayed by his side twenty-four hours a day hoping their youngest brother would get well enough to come home. It is about what happens in a hospital: a sick patient is brought in, a family hopes, a doctor cares. Except that Abdul, the patient, was a young Palestinian boy and Dalit, a young Israeli physician, was his doctor. And Abdul was being treated in an Israeli hospital in Jerusalem. Abdul was only seventeen-years-old when he was rushed to Hadassah Hospital, unable to breathe. He had been born with multiple birth defects, including heart problems, mental retardation and other visible malformations, and had been ill his entire life. After he entered the hospital, his breathing problem was resolved, but he had a heart seizure and went into a coma. Nobody knew if he would live or die. Abdul was the baby of the family. He lived with his family in East Jerusalem. One brother owned a tourist shop close to a large hotel in Jerusalem. His business was largely dependent on the tourist trade. Another brother was a barber. Two of his sisters worked as school teachers. After Abdul went into a coma and had to be admitted to the hospital, his brothers took turns staying with him twenty-four hours a day. Night or day, he was never left alone, without one of his brothers by his side watching over him, smoothing his hair, monitoring his medical condition or praying for his recovery. It was clear to anyone who entered his hospital room that he was much loved by his family. The family tried to do whatever they could, both physically and spiritually, to help Abdul awake from his coma. Above Abdul’s bed was taped a saying from the Koran that, I was told, said “God help us.” Sometimes, they would place a Koran under his pillow. They brought tapes from home in Arabic for him to hear; some were readings from the Koran, others were Arabic music that he liked. When his feeding tube needed to be changed, one of his brothers stayed with him, pointing out a sore for the nurse to treat. Often they would call his name and implore him to open his eyes. In a way, they related to him as a child who needed to be cared for — wiping the sweat from his forehead, kissing his cheek, holding his hand to let them know that they were there. His hospital course was similar to that of other patients I observed who were in coma. He lay in bed, unresponsive to voices around him. His condition got worse. He developed a high fever and sepsis, which are often ominous signs for someone in his condition. Some doctors predicted that he would not live. Others simply said they could not predict the outcome. He was quite ill but also quite young. Most agreed that when he became septic his chances of recovery were slim. All agreed that if he went into cardiac arrest and needed to be resuscitated his chances of recovery would be nil. And then he awoke. He did not speak, but his eyes opened,

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and he responded to the world around him. His family was overjoyed, even though his general medical condition was poor. Abdul’s family was Muslim. His brothers told me that their family was not particularly religious. Some of his sisters covered their heads, others did not. The family did not pressure the sisters about how they should dress. They did not eat pork, and one of them told me that he would like to visit Mecca one day. None of them prayed on a regular basis, although several of them prayed often for Abdul’s recovery. Like several other Palestinians I interviewed, they expressed a fatalistic attitude toward their brother’s recovery. All of them told me that it was up to God and that they would go along with whatever He decided, saying, “God decides when a person will die.” They did not want to let him go, but it was not up to them. I asked one of his brothers what they would do if Abdul was still in a coma after six months. He said that it was up to God, that although he was not that religious, he believed in God and prayed to God to do the right thing. He stated, “God decides what hour we will die; we may cry and feel bad, but we must honor what God decides. Even the doctors are sent by God.” He felt that there were several times when Abdul wanted to die but that they prayed to God and he lived because God decided to let him live. He also felt that, since Abdul was so young and innocent and hadn’t done anything wrong, God would have mercy on him. I asked another brother whether he believed in an afterlife. He told me that since Abdul was a child and hadn’t done anything wrong, he would not go to hell. He told me that life is like a visit; we’re here for a short time. However, he wasn’t sure about what happens in the afterlife. As to whether there was any point to suffering, he said that he does not know why it exists but that it’s what God wants. He thought that maybe it was a test for the family. He noted that Abdul had been sick his entire life, and he didn’t know why he had suffered so much in his short lifetime. As I said above, forty percent of the patients treated at Hadassah Hospital on Mount Scopus are Palestinian. This was the result of the fact that when Israel annexed East Jerusalem, all residents, Jewish or Palestinian, were given certain benefits, including free medical care. Since Mount Scopus borders on several Palestinian communities, it receives a sizeable number of these residents as their patients. Those who live in the West Bank, which has not been annexed by Israel, do not have the same medical benefits and are treated in hospitals in the West Bank. I was curious, in view of this large Palestinian patient population, how the Palestinians and Israelis felt about those with whom they came into such close contact at the hospital. I interviewed both the family of Abdul and the medical staff about their feelings towards each other. I wanted to know how this Palestinian Muslim family felt about being treated by Israeli Jewish doctors and nurses and how well they felt they were treated. Conversely, I wanted to know how the Israeli doctors and staff felt about treating Palestinians. All of Abdul’s brothers told me that the doctors on their floor were very nice and that they felt that they were treated well. They were allowed to stay in the room when Abdul was being examined and could ask as many questions of the physicians as they wanted. Because of his dire condition and his need for so many medical devices, Abdul was in a private room where his brothers were allowed to sleep. They felt that some of the nurses were a bit abrupt but that others were kind and

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showed concern. They were particularly pleased with Abdul’s primary physician, a young Israeli woman who had become quite fond of Abdul. They felt that she really cared and was doing everything she could for their brother. I was able to watch the interaction between this doctor, Dalit, and the family. Dalit spent a long time treating Abdul. She examined him, felt his forehead, called out his name to try to get him to awaken. She had a great deal of interaction with the family, who asked many questions about his condition such as whether his fever was improving and what types of antibiotics he was being given. She showed a great deal of affection for the young patient. Several of Abdul’s brothers also spoke highly of Abdul’s school teacher, who is Jewish. They told me that when the teacher found out that Abdul was in the hospital, he came to visit several times. They felt that this teacher had a special relationship with Abdul and that he “loved him.” Their biggest complaint, voiced by several of them, was that the Israeli doctors would not let one of the brothers go with Abdul when he went for the CT scan (where he had the seizure). They felt that the reason he had the seizure was that he was so scared about being left alone. They were quite upset about this and felt that this was why Abdul was in a coma. Several of the doctors and nurses with whom I spoke disagreed. They said that Abdul was brought in with a very high fever and serious breathing problems and stopped breathing during the CT scan. Their opinion was that the underlying problem for which he was brought in was what caused him to have a seizure. Another complaint was that one of the doctors told them that their brother probably would not live. They told me that only God could know whether a person would live or die and that the doctors should either be positive or say nothing. (Some of the Israelis I interviewed felt the same way. They did not want the doctors to say anything that would cause them to lose hope for their loved ones.) One of Abdul’s brothers, as well as the Palestinian father of a patient in the next room whose son was extremely ill with a long-term, chronic illness and had spent a great deal of time in Israeli hospitals, said that Yad Sarah, an Israeli charitable organization that provides medical supplies to patients for a small fee, charged the Arab patients more for supplies than the Israeli patients. For instance, the father once was charged more to rent a hospital mattress. (I did not find out if this was, in fact, Yad Sarah’s policy.) They also complained that medical students were allwed to practice drawing blood on Abdul. (This is a teaching hospital. I also did not find out if this claim was accurate and, if so, whether they practice drawing blood on all patients.) As to the feelings of the Israelis doctors and staff towards the family, I did not hear any negative or hostile comments from anyone. One of the nurses expressed admiration for the family’s dedication to Abdul. She was impressed with how the brothers stayed with him day and night and showed such concern for him. I was in the room a few times when medical staff entered to change tubes or give Abdul medicine. Several of them asked the family how Abdul was doing or wished them luck. One time, a brother answered, “Baruch hashem” (a Hebrew saying meaning “Thank God”). On one occasion, one of the machines in the room started to beep. I assumed that it was a warning that the medicine had run out. The brother in the room at the


time tried to get a nurse to fix it but was told that they were all on their coffee break. A while later, a nurse came in the room and fixed the machine. I also saw this happen to several Israeli patients. In fact, I found this rather upsetting, since I never knew whether it was a minor problem or the person had stopped breathing. I also know that on some of the hospital wards where I conducted my research, the nurses would all go on their mid-morning coffee break at the same time. There was one case reported in the Israeli newspaper while we were living there in which a child was brought in with a very serious problem. The mother told the nurses that she thought her daughter was having an acute attack and was told by the nurses to calm down and that they would get to her when they finished their coffee break. The mother was unable to get the nurses to respond and the child died. I discussed Abdul’s medical condition with the chief of the internal medicine unit, where Abdul was a patient. He knew that Abdul had had convulsions, anoxia (deprivation of oxygen), a high fever and an overall poor prognosis. He felt that although they should continue to treat Abdul, there should have been a do-not-resuscitate order for him. In his medical judgment, if Abdul were to have a heart attack that necessitated resuscitation, it would indicate that his condition had worsened and there would be no chance of survival. This was the standard that they used with other patients on the internal medicine ward. However, Abdul’s primary physician, Dalit, was against placing a do-not-resuscitate order in his chart, and the chief of the unit agreed to abide by her wishes. A few weeks later, when Abdul had not come out of the coma, had developed sepsis and a high fever, and his condition worsened, the doctors on the floor reassessed their earlier decision as to his do-not-resuscitate status. They agreed to put a do-not-resuscitate order on his chart, meaning they continued to provide him all medical care but would not revive him if he were to go into cardiac arrest. I did not ask this doctor how he felt about treating a Palestinian patient, and he did not volunteer his opinion. I observed him speaking with Abdul’s family after Abdul had come out of his coma. The discussion was about how long Abdul should remain in the hospital before being transferred to a rehabilitation hospital so that they could make sure that his condition had stabilized. The doctor told them that one or two days would be enough to make sure that his gastrostomy was working. He was cordial to the family and forthright in answering their questions. I did not observe a special relationship or bond between him and the family, nor did I see him treat them with animosity or disrespect. He did not treat them any differently than he treated any other family whose relative was a patient on his floor. Dalit, Abdul’s primary doctor, did develop a special relationship with Abdul and his family. She became emotionally attached to him and was quite anxious to see him awaken from his coma. When I asked her why she had become so attached to this patient, she told me that it was because he was so young and seemed so helpless. She was also touched by how much he was loved by his family. She had decided to ignore any do-not-resuscitate order on his chart and intended to try to revive him if the need arose. When I asked her about this, she said that although she knew medically that there was a 100-percent chance that her efforts would fail if his condition deteriorated to the point where he needed to be resuscitated, she could not sit back and watch him die. When Abdul finally did come out of his coma, she was quite pleased and shared in the joy of his family.

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Several months later, long after Abdul had been discharged from the hospital, I saw Dalit in the hallway of the hospital ward where Abdul had been a patient. I asked her if she had heard from Abdul’s family and whether he was improving. She told me that he had had to return to the hospital several times, that he was thinner, not talking and not improving. She told me that there was a chance that he would not survive. She then went on to tell me that if she had known at the time that he would do so poorly after leaving the hospital, she would not have tried so hard to save him and would have agreed to the do-not-resuscitate order. She was quite upset with how much he and his family were suffering and that he was only going downhill. However, she said that she could not have known this when he was her patient. I did not see Abdul or his family again.


Analysis

Several patterns that were seen in earlier cases involving Israeli families who were treated by Israeli doctors emerge. The most salient parallel involves the doctor’s willingness to allow herself to become emotionally attached to the patient. As in the case of Aharon, the patient I discussed in a previous chapter, who had engendered such strong emotional feelings from several of the doctors, Abdul’s doctor allowed herself to become emotionally attached to her patient and his familly. In the case of Aharon, several of the doctors became emotionally attached to the patient to the point where their feelings took precedence over their medical judgment. One doctor went so far as to try to resuscitate him, with tears in her eyes, even though she knew that he could not be saved. Similarly, in this case, Dalit told me that she would try to resuscitate Abdul even if she knew that the situation was hopeless and he could not be saved. In both cases, the doctors felt a real affection for and kinship with a patient whom they had never met (prior to their comatose state) or spoken. Are the reasons for this strong attachment, this emotional bond that the doctor felt for the patient, the same in both cases? Yes and no. In both cases, the doctors’ identification with the patient and his family caused them to develop strong feelings for the patient. In Aharon’s case, the doctor who tried to resuscitate him saw a card on the wall that his daughter had drawn for her father. His other doctor saw his family as someone with whom she could be friends. Dalit told me that she developed an affection for Abdul because he was so young and vulnerable and because she noticed the love that his family had for him. Clearly, Dalit was not seeing Abdul and his family as different or the “other” but as people who cared about their son and brother. She related to Abdul not as a Palestinian boy but as a young child who needed her help. Watching his brothers wiping his forehead and coaxing him to awaken caused her to empathize with them and imagine how his family would feel if he were to die. Despite the fact that he was of a different ethnicity and not Jewish, she identified with him. However, in the case of Aharon, there were other reasons that explain why the doctors became emotionally attached to their patient. As discussed in earlier chapters, Israeli doctors tend to see every patient as a potential family member, perhaps a distant cousin whom they have yet to meet, someone from their father’s old village, a brother-in-law’s father. The feeling is that all Israelis, and to a larger extent all Jews, are connected to one another. Because of this feeling of connectedness to one another, the understanding is that everyone is responsible for one another. It is clear to see how a doctor who views his or her patient as potentially related to the doctor could become emotionally attached to that patient. But in this case, Abdul and his family would not be seen as potential relatives. They speak a different language, they have sayings from the Koran taped over the bed, and the mother dresses in traditional clothing. The doctor knows that they are Palestinian/Muslim and not Jewish. Yet, the attachment between doctor and patient is there. Why do these visual cues and the conscious knowledge that they are not

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familially connected not prevent the doctor from becoming emotionally attached to him? The answer lies in the atmosphere created by the hospital setting. Once the environment in the hospital is established that permits such a relationship to develop, once the doctors develop the mindset that any room into which they walk can hold a relative or connected person, they do not stop to distinguish between patients. They simply walk into the room and automatically relate to the patient as they would relate to any other patient. This allows the doctor to view all of his or her patients as potentially connected to the doctor in some way, regardless of the fact that a particular patient or family is highly unlikely to be related. Thus, when Dalit walked into Abdul’s hospital room, she reacted as she would to any other young patient whose family is anxious to see him healed. In many of the previous cases, the idea of hope, or the cultural understanding that one should never give up hope, affected how the physicians and nurses treated the patients. In the case of Moshe, the man who miraculously awakened from a coma after months of not responding to the outside world, the doctors continued to hope for the patient even though he had no reasonable chance of recovery. This Israeli cultural understanding of refusing to give up hope affected Dalit’s treatment of Abdul as well. Even when he developed sepsis and a fever, diminishing his chances of recovery, she continued to treat him aggressively. Even if he were to go into cardiac arrest, which would indicate that he had no chance of recovery, Dalit still would not give up hope and would try to resuscitate him. There are other parallels to the Moshe case as well. In both cases, a loving and dedicated family maintained a vigil by the patient’s bedside, showing great concern for the patient. Both tried talking to the patient, praying for him, and bringing voices and objects to his room in the hopes of reviving the patient. The doctors in each case were clearly influenced by the dedication of these two families. Although at times some of the Moshe’s doctors may have been annoyed by his family’s involvement, their constant presence kept those doctors from giving up on him. In Abdul’s case, the dedication of the family strongly influenced Dalit and encouraged her to continue to hope and care for him. I discussed in previous chapters where this cultural understanding of refusal to give up hope comes from. Some of these ideas clearly do not apply to Abdul. The feeling that, since so many Jews were killed in the Holocaust, great effort must be made to save every Jewish life clearly does not apply to Abdul’s case. None of the doctors would consider the saving of Abdul’s life as contributing to the Jewish gene pool. However, broader understandings derived from their reaction to the Holocaust, ideals about the value of humanity, would apply to the treatment of Abdul by Jewish doctors. The idea that nobody has the right to decide who should live and who should die, or to judge one life as valuable while another is seen as “life unworthy of living,” as the Nazis did, would most certainly affect how the doctors viewed their treatment of Abdul. Finally, the concept of hope as stemming from a general Jewish ideal that one should never give up hope, no matter how hopeless the situation, would affect how doctors viewed their obligations towards all patients. Thus, although not every source of this Israeli ideal applies to Abdul, the Israeli concept of hope, of continuing to care for a patient even if the situation may appear hopeless, would affect the Israeli doctor’s treatment of Abdul.


Lastly, Israelis’ understandings about the role of religion was a contributing factor to the relationship between Abdul and his doctor, Dalit. What has been discussed in earlier chapters is the Jewish religious concept that life is sacred and that saving a life takes precedence over any other obligation. This concept goes further: life is considered sacred no matter how much time the person has left or what the condition of that life may be. In the case of Reuel, the ultra-Orthodox man whose family continued his treatment, despite the fact that he had no chance of recovery, his doctors and family believed that regardless of the fact that he was severely brain damaged, permanently attached to a respirator and would never recover, his life still had value. Even the non-religious, secular Israeli doctors were strongly influenced by this Jewish value. At the very least, the doctors and family members were hesitant go against this religious value. As seen in the case of Sarah, whose doctor insisted on inserting a feeding tube into the dying woman, Sarah’s daughter was reluctant to object vigorously to the doctor, even though she disagreed with her, because she did not want to violate this religious ideal. In Abdul’s case, as in the other cases, the strong religious influence that affects even the most secular of Israelis would strengthen Dalit’s desire to continue to treat Abdul aggressively, without regard to his medical condition. There is a subtle difference between the Jewish influence on the Israeli doctors and the Muslim influence on Abdul’s family. I am not an expert in Islam. I base my analysis solely on my observations and on what I was told by Abdul’s family and other Muslim Palestinians whom I interviewed. What they expressed to me was a fatalistic view of life and death. They felt that a person’s fate is up to God and that only God can decide when it is a person’s time to die. They prayed for Abdul’s recovery but were willing to accept whatever fate God decided for their brother and son. Both the religious Jewish families that I interviewed and Abdul’s family felt that God was in control of life and death. Both told me that even doctors are brought in by God, and both felt that there was some point to suffering. The difference between the two is that the Jewish view (of those I interviewed) is that death is something that should be resisted and fought against; whereas, the Palestinian/Muslim view (among those I interviewed) is that although one can pray for a person to recover, one should accept the ultimate decision of God. Several of the Jewish families I interviewed or observed performed a ritual whereby one changes the name of the ill person so as to “fool” God when he sends the angel of death for that person. Rather than an acceptance of God’s will, this shows a resistance to death, even to the point of defying God’s plan. In the case of Abdul, Dalit was willing to resuscitate Abdul even if it were clear that he had no chance of recovery. She would continue to fight the inevitable, to go against fate, or God, in her attempts to save her patient. This Jewish value of resisting death clearly affected Dalit’s treatment of Abdul and her refusal to give up on him. My original inquiry was what happens when Israeli doctors treat Palestinian patients, especially when a large portion of a particular hospital’s patient population is Palestinian. Do they see their patients as the “other,” as deserving only cursory care, or even as an enemy? The answer is no. At least in this hospital setting, the doctors abided by their ethical obligations to heal all who came to them for care. But they went even further. They treated these people as human beings needing care, not as members of a particular group. Perhaps it is because these patients and

AFTERWORD138

their doctors come into close contact with one another and are forced, by necessity, to communicate with one another. The doctors cannot help but see these Palestinian family members upset by seeing their loved ones suffer and notice their fear that the patient may not live. The Palestinians must allow the doctors and nurses not only to touch the patients but to perform intimate procedures on them, to bathe them when they cannot bathe themselves, to monitor their fever and treat their wounds. Of necessity, each must come into close contact with one another and must relate to each other as individuals. It could have been different. The doctors could have been resentful of having their hospital beds filled by non-Israelis. They could have continued to meet their medical obligations in a cursory way, or they could have chosen to segregate the Palestinian patients on another ward and given them poorer medical care. The family could have been hostile and resentful of needing the care of Israelis, people with whom they have been fighting for decades. But they didn’t; not in this hospital, not on this ward and not with this patient. At least in this case, the doctor was warm and caring and the family was quick to accept her warmth and return the feelings. At least in this case, they were not Palestinian and Jew, but patient and physician.

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