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Mission Statement of IASP Press速 The International Association for the Study of Pain (IASP) is a nonprofit, interdisciplinary organization devoted to understanding the mechanisms of pain and improving the care of patients with pain through research, education, and communication. The organization includes scientists and health care professionals dedicated to these goals. The IASP sponsors scientific meetings and publishes newsletters, technical bulletins, the journal Pain, and books. The goal of IASP Press is to provide the IASP membership with timely, highquality, attractive, low-cost publications relevant to the problem of pain. These publications are also intended to appeal to a wider audience of scientists and clinicians interested in the problem of pain.

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Progress in Pain Research and Management Volume 34

Narrative, Pain, and Suffering Editors

Daniel B. Carr, MD Department of Anesthesia, Tufts-New England Medical Center; Departments of Anesthesiology and Medicine, Tufts University School of Medicine, Boston, Massachusetts, USA

John D. Loeser, MD Departments of Neurological Surgery and Anesthesiology, University of Washington, Seattle, Washington, USA

David B. Morris, PhD University Professor, University of Virginia, Charlottesville, Virginia, USA


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© 2005 IASP Press® International Association for the Study of Pain® All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, without the prior written permission of the publisher. Timely topics in pain research and treatment have been selected for publication, but the information provided and opinions expressed have not involved any verification of the findings, conclusions, and opinions by IASP®. Thus, opinions expressed in Narrative, Pain, and Suffering do not necessarily reflect those of IASP or of the Officers and Councillors. No responsibility is assumed by IASP for any injury and/or damage to persons or property as a matter of product liability, negligence, or from any use of any methods, products, instruction, or ideas contained in the material herein. Because of the rapid advances in the medical sciences, the publisher recommends that there should be independent verification of diagnoses and drug dosages. Library of Congress Cataloging-in-Publication Data Narrative, pain, and suffering / editors, Daniel B. Carr, John D. Loeser, David B. Morris. p. cm. — (Progress in pain research and management ; v. 34) “Based on a symposium held in Bellagio, Italy, in October 2003”— pub. info. Includes bibliographical references and index. ISBN 0-931092-82-5 (alk. paper) 1. Chronic pain. 2. Pain—Psychological aspects. 3. Narration (Rhetoric). 4. Narrative therapy. I. Carr, Daniel B. II. Loeser, John D. (John David), 1935- III. Morris, David B. IV. Series. RB127.N36 2005 616'.0472--dc22 2005043226

Published by: IASP Press International Association for the Study of Pain 909 NE 43rd Street, Suite 306 Seattle, WA 98105-6020 USA Fax: 206-547-1703 Printed in the United States of America

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Contents List of Contributing Authors Preface Acknowledgments

vii ix x

Part I Introduction 1.

Why Narrative? Daniel B. Carr, John D. Loeser, and David B. Morris


Part II The Challenge of Narrative to Pain 2. 3. 4. 5. 6.

Pain, Suffering, and the Brain: A Narrative of Meanings John D. Loeser


A Narrative Medicine for Pain Rita Charon


The Writing Cure Melanie Thernstrom


The Chronic Pain Narrative and Quality of Life David Niv


Narrative as a Window on Chronic Disabling Back Pain C. Richard Chapman and Ernest Volinn


Part III Biological Substrate: Systems and Images 7.

8. 9.

How Physical Pain May Interact with Psychological Pain: Evidence for a Mutual Neurobiological Basis of Emotions and Pain Harald GĂźndel and Thomas R. TĂślle


Pleasure and Pain Michel Cabanac


Taking the Narrative out of Pain: Objectifying Pain through Brain Imaging Irene Tracey


Part IV Biocultural Perspectives: Meanings and Practices 10. Cancer Pain Management in China: A Personal Narrative Xin Shelley Wang


11. Patient Values and Their Meanings in Quantitative Research M. Soledad Cepeda


12. Putting Pain and Suffering in their Place Kathryn E. Lasch



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13. Unequal Burdens and Unheard Voices: Whose Pain? Whose Narratives? Carmen R. Green


14. Pain, Suffering, and the Uses of Narratives in Nursing April H. Vallerand, Susan M. Hasenau, Maureen J. Anthony, and Mitzi Saunders


Part V Sharing Pain: Uses and Limits of Narrative 15. How to Narrate Chronic Pain? The Politics of Representation Jean Jackson


16. No Time to Die Sophie Laurent


17. The Invasion of Speech by Pain Jacques Meynadier


18. Illness Narratives and the “Making Present” of Suffering Alan Radley


19. Pain and Communicative Creativity Lars-Christer Hydén


20. Success Stories: Narrative, Pain, and the Limits of Storylessness David B. Morris


Part VI The Future of Pain Narrative 21. Generosity, Care, and a Narrative Interest in Pain Arthur W. Frank


22. The Home-Alone Myth: Suffering and Solitude Eric J. Cassell


23. Becoming Mindful of Pain Narratives Mark D. Sullivan and David S. Zucker


24. Memoir of a Meta-Analyst: On the Silent “L” in “Qualntitative” Daniel B. Carr




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Contributing Authors Maureen J. Anthony, MSN, RN Wayne State University College of Nursing, Detroit, Michigan, USA Michel Cabanac, MD Department of Physiology, Faculty of Medicine, Laval University, Quebec, Canada Daniel B. Carr, MD, DAPBM, FFPMANZCA Department of Anesthesia, TuftsNew England Medical Center, Boston, Massachusetts, USA Eric J. Cassell, MD, MACP Weill Medical College of Cornell University, New York, New York, USA Soledad Cepeda, MD, PhD Department of Anesthesiology and Clinical Epidemiology Unit, Javeriana University School of Medicine, Bogotá, Colombia C. Richard Chapman, PhD Pain Research Center, Department of Anesthesiology, University of Utah School of Medicine, Salt Lake City, Utah, USA Rita Charon, MD, PhD Department of Medicine, Columbia University, New York, New York, USA Arthur W. Frank, PhD Department of Sociology, University of Calgary, Calgary, Alberta, Canada Carmen R. Green, MD Department of Anesthesiology, University of Michigan Medical School, Ann Arbor, Michigan, USA Harald Gündel, MD Department of Psychosomatics and Psychotherapy, Technical University of Munich, Munich, Germany Susan M. Hasenau, MSN, RN Wayne State University College of Nursing, Detroit, Michigan, USA Lars-Christer Hydén, PhD Department of Communication Studies, Linköping University, Linköping, Sweden Jean Jackson, PhD Department of Anthropology, Massachusetts Institute of Technology, Cambridge, Massachusetts, USA Kathryn E. Lasch, PhD Department of Medicine, Tufts University School of Medicine, Boston, Massachusetts, USA Sophie Laurent, MD Faculty of Medicine, Douleurs Sans Frontieres, Maputo, Mozambique John D. Loeser, MD Departments of Neurological Surgery and Anesthesiology, University of Washington, Seattle, Washington, USA Jacques Meynadier, MD Department of Anesthesiology, Intensive Care and Pain Management, Oscar Lambret Center, Lille, France


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viii xiv

CONTRIBUTINGAUTHORS AUTHORS CONTRIBUTING David B. Morris, PhD University of Virginia, Charlottesville, Virginia, USA David Niv, MD, FIPP Center for Pain Medicine, Tel-Aviv Sourasky Medical Center, Tel-Aviv, Israel Alan Radley, PhD Department of Social Sciences, Loughborough University, Loughborough, United Kingdom Mitzi Saunders, MSN, RN Wayne State University College of Nursing, Detroit, Michigan, USA Mark D. Sullivan, MD, PhD Department of Psychiatry and Behavioral Sciences, University of Washington School of Medicine, Seattle, Washington, USA Melanie Thernstrom, MFA Contributing Writer, The New York Times Magazine, New York, New York, USA Irene Tracey, PhD Department of Human Anatomy and Genetics, Oxford University, Oxford, United Kingdom Thomas R. Tรถlle, MD, PhD Department of Neurology, Technical University of Munich, Munich, Germany April Hazard Vallerand, PhD, RN Wayne State University College of Nursing, Detroit, Michigan, USA Ernest Volinn, PhD Pain Research Center, Department of Anesthesiology, University of Utah School of Medicine, Salt Lake City, Utah, USA Xin Shelley Wang, MD, MPH Department of Symptom Research, M.D. Anderson Cancer Center, The University of Texas, Houston, Texas, USA David S. Zucker, MD, PhD Private Practice, Rehabilitation Medicine and Counseling Psychology, Seattle, Washington, USA

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Preface When I experience pain, what is the me that suffers? When I relieve another’s pain, what is the other that I restore to well-being? Increasingly, these questions seem answerable only through an understanding of narrative. Not “narrative” merely as an engrossing tale, but “narrative” as a complex process rooted in the neurobiology of self-representation, emotion, and social interaction. Studies of pain narrative further address how individuals and cultures (including subcultures defined by race, gender, and ethnicity) experience and report pain, and how others interpret and respond to these reports. Ultimately, studies of narrative in its broadest sense not only deepen our understanding of pain and suffering, but also teach us about meaning, motivation, and discourse as represented in the biomedical, human, and social sciences. This book embodies the state-of-the-art, multidisciplinary perspective of a path-breaking international workshop. Leading contributors in neurobiology, integrative physiology, anthropology, psychology, sociology, and clinical research shared ideas with clinicians from developed and developing countries, as well as writers and journalists. The result is a unique volume that speaks to, and newly integrates, core issues integral to emerging pain research and humane health care in the 21st century. DANIEL B. CARR, MD JOHN D. LOESER, MD DAVID B. MORRIS, PhD


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ENVIRONMENT BEHAVIOR BRAIN SPINAL CORD PERIPHERAL NERVE SOMATIC TISSUES Fig. 2. The components of pain interact with each other and with the environment that surrounds the individual.

identify suffering. An effective response to suffering, in such a confused state of knowledge, is to say the least unlikely.


Ambiguities about the meaning of pain and suffering have been present throughout recorded history. The antecedents of Western culture, Greek, Hebrew, or Christian, focused upon the punitive aspects of pain and suffering. The Latin word poena (punishment) is derived from an Indo-European root that has been traced into many languages, including English, where it gives us the word pain (Procacci and Maresca 1998). The Greek words for pain, algos and odyne, also morphed into English, and we know them as the roots –algia and –odynia. There are subtle differences in meanings among these different words for pain, differences reflected in their etymologies. In many early societies, pain was ascribed to invasion of the body by demons and spirits. In the Western world, during the classical epoch and the Dark Ages, pain and suffering were believed to be the result of transgressions or sin. Societies maintained control over individuals in part through a world-view in which pain played a prominent role. Many Christians believed that people were born evil, or at least contaminated by original sin, and in need of pain and suffering to make them worthy of salvation. Heretics or criminals or whoever manifested deviant behavior were subjected to pain and suffering in the attempt to bring them back into line. From martyrdom



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illness or that their symptoms repeat the illness of a parent. Unlike hypnosis or dream interpretation, narrative medicine does not assume that the professional knows something the patient does not or cannot know. Instead, these methods flow from a conviction that we each have within ourselves and create for ourselves the stories of self, which—when they can be told and seriously heard—reveal most directly what the matter is and, even more directly, who we are (Kerby 1991; Olney 1999).


I hope it is clear from this brief introduction to narrative medicine why it is an obvious partner for pain medicine. Pain medicine is a natural environment for the telling and listening of stories, because chronic pain establishes the need for ongoing accounts of body and self. Chronic (and especially biologically unexplainable) pain requires a comprehensive and grave narrating, much like Cabot’s pernicious anemia before its etiology was understood, because no one knows what the matter is. Although final common pathways of nociception might appear biologically similar, mystery surrounds the origins of much pain, the differing sensibilities for pain of different sufferers, and the roads toward its easing. WHY IS NARRATIVE PARTICULARLY REQUIRED BY PATIENTS WITH CHRONIC PAIN?

Words are often all the pain patient has. One cannot measure plasma levels of pain or assess its depth on biopsy. What is treated in pain is the misery that can only be reported by the sufferer. Not uncommonly in medicine, we treat physical phenomena of which the patient is unaware and by which the patient is not bothered. We treat the EKG or the LDL or the PSA. That is to say, we direct our efforts toward representations of bodily states that we believe accurately reflect important dimensions of or determinants of health. We assess our therapeutic success by virtue of alterations not in the patient’s sensed state of wellness but in the cholesterol level or the length of the PR interval. As we delight in our ability to measure physical properties of the body with more and more dazzling accuracy, we may discriminate against those health states, like pain, that remain obdurately unmeasurable, putting that much more pressure on the patient who alone can take the measure of the situation and can do so only with words. No matter how reproducible numerical scales for pain might end up to be, pain sufferers will always be able to do better, in words, than a “7” or a “9.” Sometimes a patient, more often than not a child, chooses a color with



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which to represent pain—there is an understandable difference between a red pain and a brown pain. Sometimes the images a patient reaches for in conveying a symptom connote far more than data. In the short story “Interpreter of Maladies” by Jhumpa Lahiri, patients describe their symptoms: “The other day a man came in with a pain in his throat. … He complained that he felt as if there were long pieces of straw stuck in his throat. … [T]he young woman … complained of a sensation of raindrops in her spine” (Lahiri 1999). Despite a widespread sense that pain exists beyond language (Scarry 1985), clinicians have ample experience with patients’ surprising eloquence in articulating the specific quality and force of their pain. There is only accuracy and relief to be gained by seeking such expression. The source of chronic pain can be complex past trauma, knowable only through telling. Those who care for sufferers of post-traumatic stress know both how hidden and how powerful are early traumatic experiences in the development and sustenance of symptoms. Holocaust survivors, Vietnam War veterans, and survivors of the September 11, 2001 attacks attest to the ongoing nature of their post-traumatic suffering. We know this and yet often act as if we do not (Felman and Laub 1992). More often than in treating hypertension or asthma, the clinician in pain medicine has to bear witness to the past events, not so as to fix them but so as to let the patient be heard (Weinberg 1995). It is imperative for patients in pain to tell of what they undergo. Whatever complicated and over-determined origins one might point to in a particular case of chronic pain and whether or not there is significant past trauma or loss, the experience of chronic pain saps the self, steals vitality, darkens common activities, and limits pleasure. Pain may interfere with eating, with sexual activity, with being on one’s feet. Although pain receptors and pathways may be universal, each patient’s pain does something absolutely unique in his or her life. The patient must be allowed to spell out the sequelae of pain in detail so as to know them and to have them known by caregivers. The pain sufferer must be allowed to look at and describe the new self—the self with pain—so as to claim this self and to recognize its continuity with the self he or she once had been. It is the only way that we caregivers can know what is at stake in any case of prolonged pain. I do not mean to encourage pain medicine practitioners to become amateur psychoanalysts. They are not listening for occult messages or magical symbols to be interpreted into meaning. The kind of clinical telling I suggest is very practical and necessary. An uninterrupted recitation of the pain— starting wherever the patient chooses to, in a tempo chosen by the patient, with images or tropes that arise in the telling, giving a temporal frame that seems natural for the teller—can give deep and important information to the



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We propose that patients with disabling back pain of undefined origin, who present with a focused physical complaint, are in fact expressing suffering. The nature of the suffering is damage to the individual’s sense of self and a lack of vision for how to recover from this injury or how to readjust the sense of self. The damage occurs when the disparity between the inner resources and energy of the individual prove inadequate for the social role demands that society has placed upon him or her by virtue of social position (role positions such as parent, wage earner, worker, or head of family). Catastrophic events and losses can bring about irretrievable setbacks in inner resources for some people, such that they can never again adequately meet life’s demands. The experience of pain becomes a symbol for being a wounded person, and the expression of pain becomes a social and medical basis for claiming the sick role and retreating from normal life. Thus, although most people who experience back pain can live productive lives despite it, pushing it into the background of moment-to-moment experience, others who suffer as a consequence of complex psychosocial traumas embrace it as a symbol of the intimate damage they have sustained to the sense of self. It is not clear that a ready solution exists for helping patients like our subjects. However, we note that many extended the interview as long as possible, became intensely emotional and often tearful, and seemed genuinely grateful for the opportunity to disclose their stories. This experience suggests that narrative therapy may be a reasonable extension of narrativebased medicine (Kleinman 1989; White and Epson 1990; Brown et al. 1996). According to Pennebaker and Seagal (1999), narrative therapy is so efficacious that as little as three sessions of 15 minutes each may suffice to improve mental and physical health. Our perspective likewise suggests that healing of the wounded sense of self is a fundamental need of some disabled pain patients. Our experience suggests a need for research directed at the rehabilitation of patients with chronic, disabling back pain that evaluates the suffering of each individual, introduces narrative therapy, and then offers physical medicine and rehabilitation.


Currently, two competing models address the dilemma of the chronically disabled back pain patient. The first is the biomedical model, which



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simply holds that the persisting presence of pain causes the disability. It follows that intervention consists of diagnosing the cause of the pain and either correcting it with medications or other treatments. Extensive experience on an international scope demonstrates that this approach has had little or no effect on alleviating disability (van Tulder et al. 2000a). The second model is cognitive-behavioral. It holds that the pain-related disability persists (or alternatively that the patient failed to return to normal experience and function) because the patient holds maladaptive beliefs and attitudes and/or engages in maladaptive or counterproductive behaviors. Psychological intervention directed at cognitive and behavioral factors may be helpful in rehabilitating chronic back pain patients (van Tulder et al. 2000b), but it is far from a panacea. Only some patients are able to adjust their thinking and activity adequately. In sum, we have used narrative techniques to delve into the experiences of subjects chronically disabled with back pain, and, in so doing, have focused upon a critical component for the most part overlooked in medical analyses, suffering. From the perspective of individuals undergoing the experience, this is the component that takes precedence over the others. Furthermore, we contend that chronic, disabling back pain will continue to exact what in some societies approaches unacceptable costs unless this component is addressed. As an essential first step in rectifying this problem, we suggest that the cognitive-behavioral model be extended to encompass suffering. A patient with a damaged sense of self is wounded and lacks resilience, and working with a therapist on self-improvement may only aggravate the situation. Having used narrative to explore the lives of those chronically disabled by back pain, we, in turn, see its potential to go beyond models customarily used to manage chronic pain. According to the reformulated model we now propose, narrative therapy provides a means by which patients may come to terms with their lives, realize that life still contains opportunities, and, in this way, work toward a reconstructed self, one that ultimately would be less vulnerable to suffering.


A grant from the Fetzer Institute (Kalamazoo, MI) to the first author made this work possible.



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Narrative, Pain, and Suffering, Progress in Pain Research and Management, Vol. 34, edited by Daniel B. Carr, John D. Loeser, and David B. Morris, IASP Press, Seattle, Š 2005.

16 No Time to Die Sophie Laurent Douleurs Sans Frontieres, Maputo, Mozambique

Elias is 21 years old. He is too sick to carry his long thin body and appears to be already in his 30s. His look is distant, as if he is already absent. He seems apologetic for causing us trouble. We went to see him at home, a narrow house of more or less 2 meters by 4 meters divided into two nooks, one a living room and kitchen, the other a bedroom. The only source of light is from the open door of the living room. When we arrive, Elias is lying on the bed, and we can hardly distinguish anything. We can hear his groans when he stands up to get closer to the light. Finally he appears in the open door, tall at 1.85 meters, but weighing only about 55 kg. He slowly manages to sit on the chair that his mother has put in the space between the two nooks. He watches the door with great anxiety, in fear of the neighbors, who fortunately are not curious at this hour of the morning. Reassured, he looks back at us, and we seat ourselves in front of him as best we can in the only part of the house that has light. The consultation begins. Elias is suffering. His skin is covered with sores due to scabies and infection, which agitate him at the slightest movement. Most of all, he suffers because of his penis, which is an open wound. He shows it to us reluctantly. He has covered it with what he supposed was a dressing, using bits of fabric, but these have got stuck in the skin. We take the dressing off with great difficulty, by wetting the fabric slowly and letting the skin open. Throughout this procedure, Elias never stops staring at the open doorway. His mother chases away the children who pass by. There is no privacy. Everyone lives outside and that is the way of the neighborhood. What to do? How to hide him from the gaze of his neighbors? Poverty seems to make modesty and dignity impossible. Still, Elias remains dignified, solitary, aware of his state and worried by his symptoms.




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educations in pain. Infants are enfolded also in the narratives that shape the actions of parents and caregivers, including surgeons who for years retold the professional story (or belief, if you like) that it was medically proper to operate on newborns without using anesthesia. The truly fruitful challenge, as the failure of Anna’s quest might indicate, lies less in the effort to detach pain from narrative than in careful attention to the pain narratives all around us in order to sort out, responsibly, the clearly harmful narratives from those that just might help.


The difficulty of stripping narrative from pain is especially important to recognize because pain medicine often focuses on clinical settings where people enter already framed within implicit narratives that cast them as patients (not simply persons), that assign them a passive role emphasizing compliance, and that link their distress with dysfunction and even disability. Surprisingly, one study found that “significant numbers” of people, across ethnicities and cultures, make successful adjustments with ongoing chronic pain that allow them to live what the author calls “meaningful and happy lives” (Bates 1996). The pressure within health care to focus on pain as dysfunction—and to find subjects for empirical research from the ranks of patients—makes it especially important to acknowledge both patients and non-patients who thus constitute exceptions and who manage to live meaningful, happy lives despite chronic pain. How do they do it? It would take an extensive statistical research program to address the question of how people adjust successfully to chronic pain. Narrative, however, offers a different approach. It might recommend looking at individual stories of success. Such success stories—to name an unofficial genre that now dominates Western self-help literature—would constitute a resource from which patients, caregivers, and any person in pain might draw encouragement and even helpful models. There is only one problem. A big problem. Success stories look like anecdotes, and medicine (as distinct from an individual doctor) hates anecdotes. Indeed, the resistance to anecdote in medicine is legendary. An old medical joke goes like this. “Question: what is the singular of data? Answer: anecdote.” Anecdote ranks at the absolute bottom in the hierarchy of evidence-based medicine. It often appears in medical writing as the reverse of scientific fact, the antithesis of research, the opposite of real (that is, statistical) knowledge. It barely survives in minor subforms such as the syndrome letter to medical journals, but even there anecdotes represent the nonsensical concept “n of 1” (Hunter 1990).



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Narrative is always grounded in culture, and cultures presuppose shared knowledge and beliefs (Morris 1991, 1998). Why not view culture as a nonmathematical, cumulative meta-analysis of methods for humans to adapt optimally to their surroundings? In doing so, one must make allowances for the biases that human judgment appears to have programmed within it (Piattelli-Palmarini 1994; Ninio 2001). As I observed above, we are hardwired so that the very most important things in life are approached not rationally, but affectively. The predictable misperception of classical optical illusions such as that of Franz Müller-Lyer (Fig. 2) shows that human beings are genetically programmed to make stereotypical mistakes in simple visual judgments. Tversky, Kahneman, Raiffa, and others extended this insight by documenting many inevitable “cognitive illusions” that befall normal individuals asked to make simple estimates (Kahneman et al. 1982). For example, subjects given 5 seconds to calculate the product 2 × 3 × 4 × 5 × 6 × 7 × 8 tend to estimate it as 512; matched subjects asked to estimate 8 × 7 × 6 × 5 × 4 × 3 × 2 tend to answer 2,250. These responses—both far off the actual value of 40,320—have been replicated around the world. Tversky and Kahneman conducted another experiment in which subjects were asked whether they would prefer to receive $100, or agree to a coin toss in which the winner would receive $200 and the loser nothing. Subjects in another experiment were hypothetically given $100, then asked to choose between a guaranteed loss of $20 or a coin toss where the loser pays $40 and the winner nothing. Although both choices in each experiment are equivalent, most people prefer the former choice in the first experiment and the latter choice in the second, indicating that “preferences between gains are riskaverse and preferences between losses are risk-seeking.” More colorfully expressed, “we are spontaneously conservative when it comes to winning, and adventurers when it comes to loss” (Tversky 1996). This bias extends into clinical medicine. A greater proportion of clinicians felt that they would recommend a certain operation once informed that it carries a 5-year

Fig. 2. The Müller-Lyer optical illusion. Most viewers perceive the lower horizontal line as longer. Both the upper and lower horizontal lines, however, are of equal length.



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