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Crisis Standards of Care A Systems Framework for Catastrophic Disaster Response Public Engagement

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Crisis Standards of Care A Systems Framework for Catastrophic Disaster Response Volume 6: Public Engagement Committee on Guidance for Establishing Standards of Care for Use in Disaster Situations Board on Health Sciences Policy Dan Hanfling, Bruce M. Altevogt, Kristin Viswanathan, and Lawrence O. Gostin, Editors

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THE NATIONAL ACADEMIES PRESS 500 Fifth Street, NW 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. HHSP23320042509XI between the National Academy of Sciences and the Department of Health and Human Services. 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. Library of Congress Cataloging-in-Publication Data Crisis standards of care : a systems framework for catastrophic disaster response / Committee on Guidance for Establishing Standards of Care for Use in Disaster Situations, Board on Health Sciences Policy ; Dan Hanfling ... [et al.], editors. p. ; cm. Includes bibliographical references. ISBN 978-0-309-25346-8 (hardcover) — ISBN 978-0-309-25347-5 (pdf ) I. Hanfling, Dan. II. Institute of Medicine (U.S.). Committee on Guidance for Establishing Standards of Care for Use in Disaster Situations. [DNLM: 1. Disaster Medicine—standards—United States. 2. Emergency Medical Services—standards—United States. 3. Emergency Treatment— standards—United States. WA 295] 363.34—dc23 2012016602 Additional copies of this report are available from the National Academies Press, 500 Fifth Street, NW, Keck 360, Washington, DC 20001; (800) 624-6242 or (202) 334-3313; http://www.nap.edu. For more information about the Institute of Medicine, visit the IOM home page at: www.iom.edu. Copyright 2012 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 carv- ing from ancient Greece, now held by the Staatliche Museen in Berlin. Suggested citation: IOM (Institute of Medicine). 2012. Crisis Standards of Care: A Systems Framework for Cata- strophic Disaster Response. 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 schol- ars 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 mandate that requires it to advise the federal government on scientific and techni- cal 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 examination of policy matters pertaining to the health of the public. The Institute acts under the responsibility given to the National Academy of Sci- ences 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 Acad- emy, 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 GUIDANCE FOR ESTABLISHING STANDARDS OF CARE FOR USE IN DISASTER SITUATIONS LAWRENCE O. GOSTIN (Chair), O’Neill Institute for National and Global Health Law, Georgetown University Law Center, Washington, DC DAN HANFLING (Vice-Chair), Inova Health System, Falls Church, VA DAMON T. ARNOLD, Illinois Department of Public Health, Chicago (retired) STEPHEN V. CANTRILL, Denver Health Medical Center, CO BROOKE COURTNEY, Food and Drug Administration, Bethesda, MD ASHA DEVEREAUX, California Thoracic Society, San Francisco, CA EDWARD J. GABRIEL,* The Walt Disney Company, Burbank, CA JOHN L. HICK, Hennepin County Medical Center, Minneapolis, MN JAMES G. HODGE, JR., Center for the Study of Law, Science, and Technology, Arizona State University, Tempe DONNA E. LEVIN, Massachusetts Department of Public Health, Boston MARIANNE MATZO, University of Oklahoma Health Sciences Center, Oklahoma City CHERYL A. PETERSON, American Nurses Association, Silver Spring, MD TIA POWELL, Montefiore-Einstein Center for Bioethics, Albert Einstein College of Medicine, New York, NY MERRITT SCHREIBER, University of California, Irvine, School of Medicine UMAIR A. SHAH, Harris County Public Health and Environmental Services, Houston, TX JOLENE R. WHITNEY, Bureau of Emergency Medical Services (EMS) and Preparedness, Utah Department of Health, Salt Lake City Study Staff BRUCE M. ALTEVOGT, Study Director ANDREW M. POPE, Director, Board on Health Sciences Policy CLARE STROUD, Program Officer LORA TAYLOR, Senior Project Assistant (until January 2012) ELIZABETH THOMAS, Senior Project Assistant (since February 2012) KRISTIN VISWANATHAN, Research Associate RONA BRIER, Editor BARBARA FAIN, Consultant for Public Engagement * Resigned from the committee October 2011. v

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Reviewers This report has been reviewed in draft form by individuals chosen for their diverse perspectives and techni- cal 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, evidence, and responsiveness to the study charge. The review com- ments 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: Richard Alcorta, Maryland Institute for Emergency Medical Services Systems Knox Andress, Louisiana Poison Center Connie Boatright-Royster, MESH Coalition Susan Cooper, Tennessee Department of Health Lance Gable, Wayne State University Center for Law and the Public’s Health Carol Jacobson, Ohio Hospital Association Amy Kaji, Harbor-UCLA Medical Center Jon Krohmer, Department of Homeland Security Onora Lien, King County Healthcare Coalition Suzet McKinney, The Tauri Group Peter Pons, Denver Health Medical Center Clifford Rees, University of New Mexico School of Law Linda Scott, Michigan Department of Community Health Robert Ursano, Uniformed Services University School of Medicine Lann Wilder, San Francisco General Hospital and Trauma Center Matthew Wynia, American Medical Association 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 vii

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its release. The review of this report was overseen by Dr. Georges Benjamin, American Public Health Asso- ciation. Appointed by the Institute of Medicine, he was 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. viii REVIEWERS

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Contents VOLUME 1: INTRODUCTION AND CSC FRAMEWORK Summary 1-1 1 Introduction 1-15 2 Catastrophic Disaster Response: Creating a Framework for Medical Care Delivery 1-31 3 Legal Issues in Emergencies 1-55 4 Cross-Cutting Themes: Ethics, Palliative Care, and Mental Health 1-71 VOLUME 2: STATE AND LOCAL GOVERNMENT 5 State and Local Governments 2-1 VOLUME 3: EMS 6 Prehospital Care: Emergency Medical Services (EMS) 3-1 VOLUME 4: HOSPITAL 7 Hospitals and Acute Care Facilities 4-1 VOLUME 5: ALTERNATE CARE SYSTEMS 8 Out-of-Hospital and Alternate Care Systems 5-1 ix

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VOLUME 6: PUBLIC ENGAGEMENT Acronyms ix 9 Public Engagement 6-1 Goals and Benefits of Public Engagement, 6-1 A Model for Public Engagement: Resources for State and Local Authorities, 6-2 Essential Principles of Public Engagement, 6-2 Challenges and Strategies, 6-4 Toolkit Description, 6-9 Conclusion, 6-10 References, 6-11 Sponsor Guidebook, 6-13 Lead Facilitator Guidebook, 6-23 Guidebook for Table Facilitators and Note Takers, 6-63 Introductory Slides, 6-93 VOLUME 7: APPENDIXES 7-1 Appendixes x CONTENTS

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6-94 “Disaster” Defined Defined What do disasters have i n c o m m o n? How do disasters differ?  People’s needs exceed available  Some are long-lasting and resources widespread (flu pandemic)  Help cannot arrive fast enough  Others are sudden and geographically limited (earthquake, terrorist attack)

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Preparing for Disasters: The Challenge  Disasters can lead to shor tages of critical medical resources  Shortages require hard decisions, for example—  Who should be at the front of the line for vaccines or antiviral drugs?  Which patients should receive lifesaving ventilators or blood?  In extreme cases, some people will not receive all of the treatment they need How do we give the best care possible under i the worst possible circumstances? 6-95

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6-96 Recent Recent Examples Hurricane Katrina  Hospital overload H1N1 Pandemic  Vaccine shortage

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The Response: “Crisis Standards of Care” Crisis Guidelines developed before disaster strikes— To help healthcare providers decide how to administer... THE BEST POSSIBLE MEDICAL CARE …when there are not enough resources to give all patients the level of care they would receive under normal circumstances. 6-97

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6-98 When Might We Need Crisis Standards of Care? Scarce Scarce Extreme Medical Medical Crisis Crisis Resources Resources • Hurricane • Blood • Flu Pandemic • Ventilators • Earthquake • Drugs • Bioterrorism • Vaccines • Staff

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How Are Crisis Standards of Care Different? Focus of Normal Care Individual patient Community Focus of Crisis Care 6-99

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6-100 Possible Reasons for Crisis Standards of Care  To make sure that critical resources go to those who will benefit the most  To prevent hoarding and overuse of limited resources  To conserve limited resources so more people can get the care they need  To minimize discrimination against vulnerable groups  So all people can trust that they will have fair access to the best possible care under the circumstances

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Possible Strategies to Maximize Care  Space  Put patient beds in hallways, conference conference rooms, tents  Use operating rooms only for urgent cases  Supplies  Sterilize and reuse disposable equipment  Limit drugs/vaccines/ventilators to patients most likely to benefit  Prioritize comfort care for patients who will die  Staff  Have nurses provide some care that doctors usually would provide  Have family members help with feeding and other basic patient tasks 6-101

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6-102 When there isn’t enough to save ever yone… how should we decide who gets what? Some options-- 1. First-come, first-served? 2. Lottery? 3. Save the most lives possible by giving more care to people who need it the most? 4. Favor certain groups?  The old OR the young?  Healthcare workers and other emergency responders?  Workers who keep society running (utility workers, transportation workers, etc.)?

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Where Do You Come In? Community Conversations help policy makers:  Understand community concerns about the use of limited medical resources during disasters  Develop crisis standards of care guidelines that reflect community values and priorities 6-103

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6-104 Community Community Informing the Community Emergency Recovery Public Preparedness Operations Mass Care Fatality Management Detection Sharing Info Preparing for Non-Medical Aid CSC Disaster Get Medical Get Medical Get Medication Equipment to Crisis Standards of to the Public the Public Care (“CSC”)--- a pi e c e o f t h e pu z z l e Palliative Care Manage Volunteers Protect Lab Testing Responders