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P~ T
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AND
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~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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]
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2 A
Lo
AND
DISABI LITY
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