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Committee on Advancing Pain Research, Care, and Education Board on Health Sciences Policy
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THE NATIONAL ACADEMIES PRESS 500 Fifth Street, N.W. Washington, DC 20001 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 competences and with regard for appropriate balance. This study was supported by Contract No. N01-OD-4-2139, Task Order No. 234 between the National Academy of Sciences and U.S. Department of Health and Human Services, National Institutes of Health. Any opinions, findings, conclusions, or recommendations expressed in this publication are those of the author(s) and do not necessarily reflect the view of the organizations or agencies that provided support for this project. International Standard Book Number-13: 978-0-309-21484-1 (hardcover) International Standard Book Number-10: 0-309-21484-X (hardcover) International Standard Book Number-13: 978-0-309-25627-8 (paperback) International Standard Book Number-10: 0-309-25627-5 (paperback) Additional copies of this report are available from the National Academies Press, 500 Fifth Street, N.W., Lockbox 285, Washington, DC 20055; (800) 624-6242 or (202) 334-3313 (in the Washington metropolitan area); Internet, http://www.nap.edu. For more information about the Institute of Medicine, visit the IOM home page at: www.iom.edu. Copyright 2011 by the National Academy of Sciences. All rights reserved. Printed in the United States of America The serpent has been a symbol of long life, healing, and knowledge among almost all cultures and religions since the beginning of recorded history. The serpent adopted as a logotype by the Institute of Medicine is a relief carving from ancient Greece, now held by the Staatliche Museen in Berlin. Suggested citation: IOM (Institute of Medicine). 2011. Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research. Washington, DC: The National Academies Press.
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“Knowing is not enough; we must apply. Willing is not enough; we must do.” — Goethe Advising the Nation. Improving Health.
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The National Academy of Sciences is a private, nonprofit, self-perpetuating society of distinguished scholars engaged in scientific and engineering research, dedicated to the furtherance of science and technology and to their use for the general welfare. Upon the authority of the charter granted to it by the Congress in 1863, the Academy has a man - date that requires it to advise the federal government on scientific and technical matters. Dr. Ralph J. Cicerone is president of the National Academy of Sciences. The National Academy of Engineering was established in 1964, under the charter of the National Academy of Sciences, as a parallel organization of outstanding engineers. It is autonomous in its administration and in the selection of its members, sharing with the National Academy of Sciences the responsibility for advising the federal government. The National Academy of Engineering also sponsors engineering programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. Charles M. Vest is president of the National Academy of Engineering. The Institute of Medicine was established in 1970 by the National Academy of Sciences to secure the services of eminent members of appropriate professions in the examina - tion of policy matters pertaining to the health of the public. The Institute acts under the responsibility given to the National Academy of Sciences by its congressional charter to be an adviser to the federal government and, upon its own initiative, to identify issues of medical care, research, and education. Dr. Harvey V. Fineberg is president of the Institute of Medicine. The National Research Council was organized by the National Academy of Sciences in 1916 to associate the broad community of science and technology with the Academy’s purposes of furthering knowledge and advising the federal government. Functioning in accordance with general policies determined by the Academy, the Council has become the principal operating agency of both the National Academy of Sciences and the National Academy of Engineering in providing services to the government, the public, and the scientific and engineering communities. The Council is administered jointly by both Academies and the Institute of Medicine. Dr. Ralph J. Cicerone and Dr. Charles M. Vest are chair and vice chair, respectively, of the National Research Council. www.national-academies.org
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COMMITTEE ON ADVANCING PAIN RESEARCH, CARE, AND EDUCATION PHILIP A. PIZZO (Chair), Dean, Carl and Elizabeth Naumann Professor of Pediatrics and of Microbiology and Immunology, Stanford University School of Medicine, Stanford, CA NOREEN M. CLARK (Vice Chair), Myron E. Wegman Distinguished University Professor; Director, Center for Managing Chronic Disease, University of Michigan, Ann Arbor, MI OLIVIA CARTER-POKRAS, Associate Professor, Department of Epidemiology and Biostatistics, University of Maryland College Park School of Public Health, College Park, MD MYRA CHRISTOPHER, President and CEO, Kathleen M. Foley Chair in Pain and Palliative Care, Center for Practical Bioethics, Kansas City, MO JOHN T. FARRAR, Associate Professor of Epidemiology; Director, Master of Science in Clinical Epidemiology, Center for Clinical Epidemiology and Biostatistics, University of Pennsylvania, Philadelphia, PA KENNETH A. FOLLETT, Professor and Chief of Neurosurgery, Division of Neurosurgery, University of Nebraska Medical Center, Omaha, NE MARGARET M. HEITKEMPER, Elizabeth Sterling Soule Chair; Professor and Chairperson, Department of Biobehavioral Nursing and Health Systems, University of Washington, Seattle, WA CHARLES INTURRISI, Professor of Pharmacology, Weill Cornell Medical College, Pharmacology, New York, NY FRANCIS KEEFE, Professor, Department of Psychiatry and Behavioral Sciences; Director, Duke Pain Prevention and Treatment Research Program, Professor of Psychology and Neuroscience, Durham, NC ROBERT D. KERNS, National Program Director for Pain Management, VA Central Office; Director, Pain Research, Informatics, Medical Comorbidities, and Education (PRIME) Center, VA Connecticut; Professor of Psychiatry, Neurology and Psychology, Yale University PRIME Center, VA Connecticut Healthcare System, West Haven, CT JANICE S. LEE, Associate Professor, Department of Oral and Maxillofacial Surgery, School of Dentistry, University of California, San Francisco, CA ELIZABETH LODER, Chief, Division of Headache and Pain, Department of Neurology, Brigham and Women’s and Faulkner Hospitals, Associate Professor of Neurology, Harvard Medical School, Boston, MA SEAN MACKEY, Associate Professor, Departments of Anesthesia, Neuroscience and Neurology; Chief for the Division of Pain Management, Stanford University School of Medicine, Palo Alto, CA v
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RICK MARINELLI, Naturopathic Physician and Acupuncturist Clinic Director, Natural Medicine Clinic, Portland Vein Clinic; Diplomate, American Academy of Pain Management; Commissioner, Oregon Pain Management Commission, Portland, OR RICHARD PAYNE, Professor of Medicine and Divinity, Esther Colliflower Director, Duke Institute on Care at the End of Life, Duke University Divinity School, Durham, NC MELANIE THERNSTROM, Contributing Writer, The New York Times Magazine, Vancouver, WA DENNIS C. TURK, John and Emma Bonica Professor of Anesthesiology and Pain Research; Director, Center for Pain Research on Impact, Measurement, & Effectiveness (C-PRIME), Department of Anesthesiology and Pain Medicine, University of Washington, Seattle, WA URSULA WESSELMANN, Edward A. Ernst Endowed Professor of Anesthesiology, Professor of Neurology, University of Alabama at Birmingham, Department of Anesthesiology, Division of Pain Medicine, Birmingham, AL LONNIE ZELTZER, Director, Pediatric Pain Program, Mattel Children’s Hospital at UCLA; Professor of Pediatrics, Anesthesiology, Psychiatry and Biobehavioral Sciences, David Geffen School of Medicine at the University of California, Los Angeles, CA Study Staff ADRIENNE STITH BUTLER, Senior Program Officer JING XI, Research Associate THELMA L. COX, Senior Program Assistant VICTORIA WEISFELD, Consultant Writer NEIL WEISFELD, Consultant Writer RONA BRIERE, Consultant Editor Board Staff ANDREW M. POPE, Director, Board on Health Sciences Policy DONNA RANDALL, Assistant, Board on Health Sciences Policy VICTORIA BOWMAN, Financial Associate vi
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Reviewers This report has been reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise, in accordance with procedures approved by the National Research Council’s Report Review Committee. The purpose of this independent review is to provide candid and critical comments that will assist the institution in making its published report as sound as possible and to ensure that the report meets institutional standards for objectivity, evi - dence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the deliberative process. We wish to thank the following individuals for their review of this report: Allan Basbaum, University of California, San Francisco Karen J. Berkley, Florida State University David L. Brown, Cleveland Clinic Roger Chou, Oregon Health & Science University Charles S. Cleeland, M.D. Anderson Cancer Center Lisa A. Cooper, Johns Hopkins Medical Institutions Penney Cowan, American Chronic Pain Association Betty Ferrell, City of Hope Kathleen Foley, Memorial Sloan-Kettering Cancer Center Kenneth R. Goldschneider, Cincinnati Children’s Hospital Medical Center Carlton Haywood, Jr., The Johns Hopkins School of Medicine William Maixner, University of North Carolina at Chapel Hill Frank Porreca, University of Arizona Jeannette Rogowski, University of Medicine and Dentistry of New Jersey Joseph C. Salamone, Rochal Industries, LLP vii
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viii REVIEWERS Joshua M. Sharfstein, Maryland Department of Health & Mental Hygiene William S. Stokes, National Institute of Environmental Health Sciences Diane Wilkie, University of Chicago Kevin C. Wilson, Private practice, Hillsboro, Oregon Although the reviewers listed above have provided many constructive comments and suggestions, they were not asked to endorse the conclusions or recommendations nor did they see the final draft of the report before its release. The review of this report was overseen by Caswell A. Evans and Elaine L. Larson. Appointed by the National Research Council and Institute of Medicine, they were responsible for making certain that an independent examination of this report was carried out in accordance with institutional procedures and that all review comments were carefully considered. Responsibility for the final content of this report rests entirely with the authoring committee and the institution.
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Preface Protection from and relief of pain and suffering are a fundamental feature of the human contract we make as parents, partners, children, family, friends, and community members, as well as a cardinal underpinning of the art and science of healing. Pain is part of the human condition; at some point, for short or long periods of time, we all experience pain and suffer its consequences. While pain can serve as a warning to protect us from further harm, it also can contribute to severe and even relentless suffering, surpassing its underlying cause to become a disease in its own domains and dimensions. We all may share common account - ings of pain, but in reality, our experiences with pain are deeply personal, filtered through the lens of our unique biology, the society and community in which we were born and live, the personalities and styles of coping we have developed, and the manner in which our life journey has been enjoined with health and disease. The personal experience of pain is often difficult to describe, and the words we choose to describe pain rarely capture its personal impact, whether it is sudden and limited or persists over time. Severe or chronic pain can overtake our lives, having an impact on us as individuals as well as on our family, friends, and community. Through the ages, pain and suffering have been the substrates for great works of fiction, but the reality of the experience, especially when persistent, has little redeeming or romantic quality. The personal story of pain can be transformative or can blunt the human values of joy, happiness, and even human connectedness. As a physician and a public health professional, we have experienced pain in different ways, but we also share a common bond of experience with those we have cared for professionally or personally. Those experiences shaped the way we approached the request of the Institute of Medicine (IOM) to co-chair a committee to assess the impact of pain in America. Our experiences extend from ix
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x PREFACE the care of individuals to evaluation of health and disease in populations, and we were joined by an outstanding group of individuals with deep knowledge of the biological, psychosocial, ethical, legal, clinical, and deeply personal aspects of pain and suffering. Over an intense 5-month period, we shared facts and figures, perceptions and realities, knowledge and assumptions, and listened carefully to each other and to the dozens of individuals and groups who provided testimony at our public meetings, as well as the thousands who shared their stories, hopes, dis- appointment, and anger in their written comments and testimonials. Throughout this process, we received extraordinary support from the IOM—especially from Adrienne Stith-Butler and Thelma Cox. We also benefited from the writing skills of Victoria and Neal Weisfeld. We have been enriched by all these experiences and encounters and have tried to respond to the pleas of many for recognition, understanding, and help. While we came to this study with our own expectations, we have recognized as a consequence of our shared efforts that the magnitude of the pain suffered by individuals and the associated costs constitute a crisis for America, both human and economic. We recognize further that approaching pain at both the individual and the broader population levels will require a transforma- tion in how Americans think and act individually and collectively regarding pain and suffering. We believe this transformation represents a moral and national imperative. Our conclusions are consonant with our individual life journeys. One of us spent decades as a pediatric oncologist and clinical scientist focused on chil - dren with catastrophic diseases. Pain and suffering were natural extensions of these disease processes and evoked sympathy and compassion from health care providers, families, and communities. But those experiences also made clear that while pain can often be controlled, it frequently cannot be eliminated, and when that is the case, it becomes more dominant for the individual than her or his underlying disease. It also became clear that when pain could be ascribed to an underlying dis - ease, such as cancer, it was accepted as real and treated with concern. The valida - tion of disease made the pain socially acceptable, not shunned by the health care system or by families and communities. However, when as a pediatric oncologist one of us also experienced chronic pain in a family member whose underlying disease was less well defined, the cultural perception of and response to the pain by the health care community was dramatically different. Reactions ranged from care and compassion to judgmental opinions that lacked compassion and some- times devolved into blaming or personalization of responsibility. The lack of a defined disease made the symptoms of pain and suffering less acceptable and more ascribed to overreaction, emotional instability, or worse. Because the pain could not be seen or measured “objectively” or interpreted within the context of the known, it was more likely to be dismissed, diminished, or avoided. The irony is that this pain and suffering, just like that of the patient with a known disease, could be life dominant—a disease in its own right.
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xi PREFACE As a behavioral scientist, one of us has worked for years with individuals, families, and communities that are trying to manage chronic disease effectively. This personal journey has made clear that for people who must deal with a heart condition, a digestive disease, a rheumatic condition, or a similar problem, pain can be a persistent companion. It can exacerbate depression, produce fatigue, hamper functioning, and diminish quality of life. It can create stress and extract high psychic and material costs in families. It also can lead to the development of unexpected personal strengths and an astonishing capacity to prevail. However, pain is a fearsome way to develop such qualities. Control of pain, and of the disease that often accompanies it, depends on the ability of individuals to garner information and assistance, of family members to give productive help, of clini - cians to explore many options, and of communities to create systems to support families and clinicians. Most people living with pain, however, are not cosseted in this way, and we are woefully lacking in understanding how to offer them with the help they need or, when we do understand, in the capacity to provide it. This is not to say that the medical community is uncaring and unwilling to help people with pain. But health care providers are subject to bias, limitations in knowledge, and differences in the systems in which they work. They are eager for new solutions and new insights, particularly with respect to chronic pain when a defined cause is lacking. Unfortunately, many health care providers lack a comprehensive perspective on pain and not infrequently interpret the suffering of others through their own personal lens. Misjudgment or failure to understand the nature and depths of pain can be associated with serious consequences—more pain and more suffering—for individuals and our society. Our committee recognizes the need for a transformed understanding of pain. We believe pain arises in the nervous system but represents a complex and evolv- ing interplay of biological, behavioral, environmental, and societal factors that go beyond simple explanation. Knowledge of pain needs to be enriched from the molecular and genetic to the cellular, neural network, and systems levels. It is necessary to understand how the settings and surroundings in which pain occurs and is experienced have an impact on its biology. The committee recognizes the need for new tools and metrics with which to define, diagnose, and monitor pain and its consequences, as well as for new approaches to treatment and preven- tion that are likely to result from novel and more interdisciplinary approaches to research. We see a need for better ways to develop, evaluate, and make available new approaches to pain management more rapidly and expeditiously. We also see the importance of approaching the individual within the broader domain of cultural diversity and of recognizing the subpopulations that are most affected by chronic pain and develop strategies to address their needs. We believe it is necessary to understand better the link between acute and chronic pain and find ways to break that link. We recognize the need to develop ever more informed health care professionals, working individually and in teams, in rural and urban settings, to address pain in the communities they serve. We believe it is neces -
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xii PREFACE sary to understand better the true impact of pain on the workforce, our families, and the broader population and seek ways to lessen that impact. Meeting these challenges will require a cultural transformation in the way pain is perceived and managed on both the personal and societal levels. The committee worked diligently to develop this report in an objective man - ner based on evidence. In doing so, we became acutely aware of the limitations of existing knowledge and the data on which it is based. We learned from our deliberations that there is crisis in the impact of and response to pain in America. Individually and collectively, we have a moral imperative to address this crisis. It is our hope that this report will help stimulate a concerted response to this crisis. Philip A. Pizzo, Chair Noreen M. Clark, Vice Chair Committee on Advancing Pain Research, Care, and Education
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Acknowledgments Many individuals and organizations made important contributions to the study committee’s process and to this report. The committee wishes to thank these individuals, but recognizes that attempts to identify all and acknowledge their contributions would require more space than is available in this brief section. To begin, the committee would like to thank the sponsors of this report. Funds for the committee’s work were provided by the U.S. Department of Health and Human Services, National Institutes of Health. The committee thanks Amy B. Adams, who served as project officer, for her assistance during the study process. The committee gratefully acknowledges the contributions of the many indi- viduals who provided valuable input to its work. These individuals helped the committee understand varying perspectives on pain research, care, and educa - tion. The committee thanks those who provided important information and data at its open workshops. Appendix A lists these individuals and their affiliations. As part of its work, the committee received written testimony from thousands of individuals and organizations. This testimony helped the committee understand the experiences of persons living with pain and their family members, as well as health care providers, and the perspectives of many stakeholder organiza- tions. Appendix B provides a summary of this input. The committee is grateful for the time, effort, and valuable information provided by all of these dedicated individuals. The committee would like to thank the authors whose commissioned paper added to the evidence base for this study. These include Darrell J. Gaskin, Johns Hopkins Bloomberg School of Public Health, and Patrick Richard, The George xiii
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xiv ACKNOWLEDGMENTS Washington University School of Public Health and Health Services. Finally, the committee thanks individuals who assisted in its work by providing data. The committee acknowledges Jennifer Madans, Charlotte Schoenborn, Vicki Burt, and colleagues from the National Center for Health Statistics, and Kevin Galloway, Army Pain Task Force.
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Contents SUMMARY 1 Charge to the Committee and Study Approach, 2 The Need for a Cultural Transformation in the Way Pain Is Viewed and Treated, 3 Findings and Recommendations, 4 Conclusion, 13 1 INTRODUCTION 19 Study Context and Charge to the Committee, 20 Study Approach and Underlying Principles, 20 What Is Pain?, 24 Who Is at Risk?, 26 Impact of Pain on Physical and Mental Health, 31 A Typology of Pain, 32 What Causes Pain, and Why Does It Sometime Persist?, 34 The Need for a Cultural Transformation, 44 Organization of the Report, 49 References, 49 2 PAIN AS A PUBLIC HEALTH CHALLENGE 55 Scope of the Problem, 59 Disparities in Prevalence and Care in Selected Populations, 64 The Seriousness of Pain, 85 The Costs of Pain and Its Treatment, 91 Potential Roles for Public Health, 95 xv
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xvi CONTENTS Findings and Recommendations, 100 References, 103 3 CARE OF PEOPLE WITH PAIN 113 Treatment Overview, 115 Treatment Modalities, 129 Selected Issues in Pain Care Practice, 137 Barriers to Effective Pain Care, 153 Models of Pain Care, 158 Conclusion, 161 Findings and Recommendations, 161 References, 165 4 EDUCATION CHALLENGES 179 Patient Education, 180 Public Education, 184 Physician Education, 190 Nurse Education, 201 Other Health Professions Education, 204 Conclusion, 209 Findings and Recommendations, 209 References, 210 5 RESEARCH CHALLENGES 217 Expanding Basic Knowledge, 220 Moving from Research to Practice, 224 Improving and Diversifying Research Methods, 228 Building the Research Workforce, 238 Organizing Research Efforts, 239 Obtaining Federal Research Funding, 244 Fostering Public–Private Partnerships, 245 Findings and Recommendations, 250 References, 254 Annex 5-1, 259 6 A BLUEPRINT FOR TRANSFORMING PAIN PREVENTION, CARE, EDUCATION, AND RESEARCH 269 Reference, 271 GLOSSARY 277
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xvii CONTENTS APPENDIXES A Data Sources and Methods 281 B Summary of Written Public Testimony 293 C The Economic Costs of Pain in the United States 301 D Committee and Staff Biographies 339 INDEX 349
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