Six Lives in Jerusalem: End-of-Life Decisions in Jerusalem — Cultural, Medical, Ethical and Legal Considerations

149 Pages·2003·1.02 MB·English

by  Randy Linda Sturman (auth.)

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 Africa
TERRY CARNEY, University of Sydney, Australia
UFFE JUUL JENSEN, Universitet Aarhus, Denmark
GERRIT K. KIMSMA, Vrije Universiteit, Amsterdam, The Netherlands
EVERT VAN LEEUWEN, Vrije Universiteit, Amsterdam, The Netherlands
SHEILA MCLEAN, Glasgow University Law School, Glasgow, United Kingdom
DAVID NOVAK, University of Toronto, Canada
EDMUND 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 JERUSALEM
End-of-Life Decisions in Jerusalem – Cultural,
Medical, Ethical and Legal Considerations
by
Randy Linda Sturman
Department 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.
ISBN 978-94-010-3777-8 ISBN 978-94-007-1052-8 (eBook)
DOI 10.1007/978-94-007-1052-8
Printed on acid-free paper
All Rights Reserved
© 2003 Springer Science+Business Media Dordrecht
Originally published by Kluwer Academic Publishers in 2003
Softcover reprint of the hardcover 1st edition 2003
No part of this work may be reproduced, stored in a retrieval system, or transmitted
in any form or by any means, electronic, mechanical, photocopying, microfilming, recording
or otherwise, without written permission from the Publisher, with the exception
of any material supplied specifically for the purpose of being entered
and executed on a computer system, for exclusive use by the purchaser of the work.
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 mater 75
VIII. The Influence of the Holocaust 91
IX. Conclusion 10
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
2 CHAPTER 1
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
4 CHAPTER 1
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