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P~ T ~ , AND D,4~ - ~TT TIV Clinical, Behavioral, and Public Policy Perspec l is es INSTITUTE OF MEDICINE Committee on Pain, Disability, and Chronic Illness Behavior Marian Osterweis, Arthur Kleinman, and David Mechanic, Editors NATIONAL ACADEMY PRESS Washington, D.C. 1987

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NATIONAL ACADEMY PRESS 2101 Constitution Avenue, N.W. Washington, D.C. 20418 NOTICE: The project that is the subject of this report was approved by the Governing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The members of the committee responsible for the report were chosen for their special com~?etences and with regard for appropriate balance. This report has been reviewed by a group other than the authors according to procedures approved by a Report Review Committee consisting of members of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The Institute of Medicine was chartered in 1970 by the National Academy of Sciences to enlist distinguished members of appropriate professions in the examination of policy matters pertaining to the health of the public. In this, the Institute acts under both the Academy's 1863 congressional charter responsibility to be an adviser to the federal government and its own initiative in identifying issues of medical care, research, and education. This volume is the final report of a study conducted under Contract No. 600-85-0263 with the Social Security Administration, Department of Health and Human Services. Library of Congress Cataloging-in-Publication Data Pain and disability. Includes index. 1. Intractable pain Social aspects. 2. Intractable pain Public policy. 3. Intractable pain Economic aspects. 4. Disability evaluation. I. Osterweis, Marian. II. Kleinman, Arthur. III. Mechanic, David, 1936- IV. Institute of Medicine (U.S.). Committee on Pain, Disability, and Chronic Illness Behavior. [DNLM: 1. Chronic Disease. 2. Disability Evaluation. 3. Pain. 4. Public Policy. 5. Sick Role. WL 704 Pl4435] RB127.R33213 1987 ISBN 0-309-03737-9 362.1 87-11232 Copyright @) 1987 by the National Academy of Sciences No part of this book may be reproduced by any mechanical, photographic, or electronic process, or in the form of phonographic recording, nor may it be stored in a retrieval system, transmitted, or otherwise copied for public or private use, without written permission from the publisher, except for the purposes of of ficial use by the United States Government. Printed in the United States of America First Pnnung, May 1987 Second Pnniing, August 1988 Third Pnning, January 1992

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INSTITtJTE OF MEDICINE Committee on Pain, Disability, and Chronic Illness Behavior ARTHUR KLEINMAN, M.D., Chairman. Professor of Medical Anthropology and Psychiatry, Harvard Medical School, and Faculty of Arts and Sciences, Harvard University DAVID MECHANIC, Ph.D., Vice Chairman. Rene Dubos Professor of Behavioral Science and Director, Institute for Health, Health Care Policy and Aging Research, Rutgers University RICHARD ABRAMS, LLB, Abrams and Spector, Edina, Minnesota BORIS ASTRACHAN, M.D., Director, Connecticut Mental Health Center and Professor of Psychiatry, Yale University MONROE BERKow~Tz, Ph.D., Professor and Director of the Disability and Health Economics Research Division of the Bureau of Economic Research, Rutgers University Ro~ERT J. BOYD, M.D., Director, Problem Back Clinic, Massachusetts General Hospital, and Assistant Clinical Professor of Orthopedics, Harvard Me~cal School ARTHUR L. CAPLAN, Ph.D., Associate Director, The Hastings Center ERIC CASSELL, M.D., Clinical Professor of Public Health, Cornell University Medical College C. RICHARD CHAPMAN, Ph.D., Professor, Department of Anesthesiology, Psychiatry, Behavioral Sciences, and Associate Director for Research, Multidisciplinary Pain Center, University of Washington, Seattle HowARD L. FIELDS, M.D., Ph.D., Professor of Neurology and Physiology, University of California, San Francisco CARL GUNDERSON, M.D., Col., MC, United States Army; Chief, Neurology Service, Walter Reed Army Medical Center, and Professor and Acting Chairman, Department of Neurology, Uniformed Services University of Health Sciences CHARLES E. LEWIS, M.D., Sc.D., Professor of Medicine, Public Health and Nursing, UCLA School of Medicine JUNE S. ROTHBERG, R.N., Ph.D., Professor of Nursing (formerly Vice Provost for Academic A~ninistration), Adelphi University, Garden City, New York DAVID G. SIMONS, M.D., Clinical Professor, Department of Physical Medicine and Rehabilitation, University of California at Irvine (formerly Director, Myofascial Pain Clinic, VA Hospital, Long Beach) . . .

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WILLIAM A. SPENCER, M.D., President, The Institute for Rehabilitation and Research, The Texas Medical Center, Chairman and Professor, Department of Rehabilitation, Baylor College of Medicine WALTER 0. SPITZER, M.D., M.P.H., F.R.C.P.(C), Strathcona Professor and Chairman, Department of Epidemiology and Biostatistics, McGill University Faculty of Medicine JOHN D. STOECKLE, M.D., Chief, Medical Clinics and Associate Director, Primary Care Program, Massachusetts General Hospital, and Professor of Medicine' Harvard Medical School DEBORAH A. STONE, Ph.D., David R. Pokross Professor of Law and Social Policy, Heller School, Brandeis University Institute of Medicine President SAMUEL 0. THrER, M.D. Project Staff MARIAN OSTERWEIS, Ph.D., Study Director CYNTHIA HowE, Research Associate FREDRIC SOLOMON, M.D., Director, Division of Mental Health and Behavioral Medicine SANDRA DAVE, Project Secretary IV

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Preface and Acknowledgments The 1984 amendments to the Social Security Act ~ (P.:~. 913-460) included the first statutory stan- dard defining how pain should be evaluated for purposes of determin- ing eligibility for disability benefits. By that time considerable concern had developed about symptom complaints especially pain that were not adequately accounted for by objective medical evidence of disease or injury. During 1980 and 1981 there had been a purging of the disability rolls that caused a strong public reaction and the eventual reinstatement of many beneficiaries. Furthermore the administrative law judges were overturning about 50 percent of the cases they heard thus granting benefits to people who had been denied at the lower levels; and in about half their cases the federal courts were remanding cases back to administrative review or were awarding benefits. Observers believe that claimants with mental impairments and those with symptom complaints such as pain were disproportionately represented among those who appealed initial denials and subsequent- ly were allowed benefits as well as among those disqualified during the 1980-19~31 Continuing Disability Reviews who were later reinstat- ed. The federal courts moreover were handing down opinions that included directives to the Social Security Administration (SSA) about how to evaluate pain for purposes of determining eligibility for disability benefits that ran counter to the existing regulations. Clearly the issues were controversial. As part of the 1984 legislation Congress mandated the Secretary of the Department of Health and Human Services (HHS) to appoint a v

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V1 PREFACE AND ACKNOWLEDGMENTS commission for the evaluation of pain whose task it was to study the current pain evaluation policy and recommend changes as appropriate. It was further mandated that the commission "shall work in consulta- tion with the National Academy of Sciences." That consultative activity fell to the Institute of Medicine (IOM), a component of the Academy complex. Given its short life and limited resources, the HHS Commission on the Evaluation of Pain was not able to explore fully the variety of issues surrounding chronic pain, illness behavior, and disability. Thus, at the suggestion of the commission, the SSA request- ed that the TOM convene a committee to conduct a more detailed study to expand on the work of the commission. Specifically, the Institute of Medicine was asked to explore: the relationship between medical illness and pain as a symptom complaint the distinction between acute and chronic pain the pathway from acute pain to chronic pain to chronic pain syndrome and to the inability to function the concept of illness behavior, especially as it relates to people with chronic pain how various disability benefit programs deal with complaints of chronic pain that are not fully accounted for by objective medical findings promising approaches to the assessment and measurement of chronic pain and dysfunction ~ promising approaches to the rehabilitation of chronic pain pa- tients how the SSA benefit structure and administrative processes may affect pain complaints. Further, the TOM committee was asked to consider making recom- mendations regarding: possible changes in the way the SSA deals with pain in the context of disability determinations ~ the role that rehabilitation might play in the current disability program in relation to patients with chronic pain promising areas of research that would further our understanding of the nature of chronic pain and its measurement. A diverse group of experts from the TOM membership and beyond was appointed to the study committee. The eighteen members included representatives from various medical specialties (primary care, ortho- pedics, neurology, physical medicine and rehabilitation, psychiatry),

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PREFACE AND ACKNOWLEDGMENTS Vii the social and behavioral sciences (psychology, sociology, anthropolo- gy), political science, economics, law, ethics, and public policy. One member, Eric Cassell, served as liaison from the HHS Commission on the Evaluation of Pain as well as being an active member of the lOM committee. The committee held five two-day meetings during which it debated the issues, heard presentations from SSA officials and pain measurement experts, and reviewed early drafts of the report. The published literature from the many disciplines with an interest in pain and disability and the informed judgment of the committee form the basis for the report. The entire committee has worked hard on the overall report, but some chapters benefit particularly from the work of one or more members. Deborah Stone took major responsibility for Chapter 2, the sociopolitical background of the problem. Monroe Berkowitz took the lead on Chapter 5, the economic perspective. Chapter 6, the epidemiol- ogy of pain, was based on work by Walter Spitzer and his colleague at McGill University, Mary Ellen Thomson. Howard Fields drafted Chapter 7, the physiology of pain. Much of Chapter 9 on psychiatric perspectives was written by Boris Astrachan with the assistance of Yale colleagues Lawrence H. Price, Richard S. Schottenfeld, and Steven Southwick. Drafting of Chapter 10, chronic pain in clinical practice, was led by John Stoeckle and Robert Boyd. Richard Chapman took responsibility for Chapter 11, the measurement and assessment of pain. June Rothberg, David Simons, and William Spencer did much of the drafting of Chapter 12, rehabilitation approaches to pain. Comprehensive projects of this kind depend on the capabilities and efforts of staff. The committee was fortunate, indeed, to have the staff support of Marian Osterweis, study director. Her understanding of the various dimensions of the pain problem, and outstanding organization- al skills and talents in bringing together diverse materials in mean- ingfu] ways, contributed in an essential way to every aspect of this committee's report including conceptualization, research, and draft- ing. Cynthia Howe, research associate, made major contributions to this endeavor. Her tireless research efforts, clear thinking, and fine prose are reflected throughout the report, the last particularly in Chapter 3. Fredric Solomon, director of the Division of Mental Health and Behavioral Medicine of the TOM, participated in the committee's deliberations and ably assisted in its conceptualizations and in various aspects of the report. And, finally, Sabrina Dave, project secretary, competently handled all the meeting logistics and the preparation of the manuscript for this report. The committee's work was aided by two commissioned background

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~ . . Vlll PREFACE AND ACKNOWLEDGMENTS papers, one on cross-national comparisons of disability policies by Eldon Wegner, Department of Sociology, University of Hawaii, and the other on the history of the Social Security disability programs by Edward Berkowitz of George Washington University and Daniel M. Fox of the State University of New York at Stony Brook. In addition, Harold Merskey, London Psychiatric Hospital, London, Ontario, pro- vided a valuable background paper on psychiatric approaches to chronic pain. Thomas Csordas, a medical anthropologist at Harvard Medical School, assisted in the drafting of Chapter 8. Deborah Swans- burg, of the Institute of Medicine staff, drafted important sections of Chapters 3 and 4. Jerry Mashaw, Yale Law School, and Robert Gerwin, a practicing neurologist in the Washington, D.C., area, were helpful in reading and commenting on drafts of some chapters. Thomas Drury and Kathleen Danchik of the National Center for Health Statistics were invaluable in providing statistics and references from the Center. Of great value to the committee in its deliberations were the presentations of the Panel on Assessment of Pain and Dysfunction, brought together at our meeting of April 14, 1986. Presenters were committee member Howard Fields; David Florence, People's Commu- nity Hospital Authority, Wayne, Michigan, and former member of the HHS Commission on the Evaluation of Pain; Francis Keefe, Pain Management Program, Duke University; Frances Marcus-IJewis, Uni- versity of Washington School of Nursing, Seattle; Harold Merskey, London Psychiatric Hospital, London, Ontario; and Richard Stern- bach, Pain Treatment Center, Scripps Clinical Medical Group, La JolIa, California. A grant from the Upjohn Company that helped to defray expenses for this session was much appreciated. Finally, we would like to acknowledge the contribution of the staff of the Social Security Administration. Patricia Owens, Associate Com- missioner for Disability during most of this project, attended many of the committee's meetings and made herself and her staff available for assistance. Nancy Dapper, Executive Director of the Commission on the Evaluation of Pain, was an unfailing source of information and data. Gary Thorne ably carried out his responsibilities as project officer and coordinated all requests for information. Victoria Dorf was always willing to track down the facts and numbers needed by the committee. ARTHUR KLEINMAN, M.D. Chairman DAVID MECHANIC, Ph.D. Vice-Chairman

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Contents Summary. I. Introduction PART I The Problem of Pain for the Social Security Administration 12 2. The Sociopolitical Background of the Pain Issue 21 3. Disability Determination and the Role of Pain 37 4. Conflicts and Contradictions in the Disability Program 66 PART II The Extent and Cost of the Problem 5. Economic Issues and the Cost of Disability 87 6. The Epidemiology of Chronic Pain and Work Disability The Sociopolitical Background of the Pain Issue niQohili+~r n~f^~i~;~ OVA the R^1^ ^{P^;~ PART III Influences on Pain and Pain Behavior 7. Me Anatomy and Physiology of Pain 123 8. IlIness Behavior and the Experience of Pain 146 9. Psychiatric Aspects of Chronic Pain ~ ~- PART n Assessing and Treating Pain and Dysfunction 10. Chronic Pain in Medical Practice 189 11. Measuring Pain and Dvsfunction ............ 211 12. 101 ...... 165 _ _ ~ ~ Rehabilitation Approaches and Issues in Chronic Pain 232 PART V Conclusions and Recommendations is. Conclusions and Recommendations 263 Appendix: Myofascial Pain Syndromes Due to J rigger Points David G. Simons, M D 285 Index.

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- ] - - 2 A Lo AND DISABI LITY

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