Crisis Standards of Care A Systems Framework for Catastrophic Disaster Response: Volume 1: Introduction and CSC Framework (2012) / Chapter Skim
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Volume 6--Public Engagement
Volume 6--Public Engagement
Pages 347-463
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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
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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 ...
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"Knowing is not enough; we must apply. Willing is not enough; we must do." -- Goethe Advising the Nation.
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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.
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KRISTIN VISWANATHAN, Research Associate RONA BRIER, Editor BARBARA FAIN, Consultant for Public Engagement * Resigned from the committee October 2011.
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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: 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.
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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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Acronyms ARS audience response systems CSC crisis standards of care HPP Hospital Preparedness Program PHEP Public Health Emergency Preparedness Sequential Organ Failure Assessment SOFA xi
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during a catastrophic disaster. This chapter provides a framework and offers a set of tools for conducting public engagement or "community conversations" about crisis standards of care (CSC)
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surveys, scenarios, slides, and other tools with which to educate participants from the general public about the need for CSC and to explore community views on the ethical underpinnings that should be reflected in CSC guidelines; and (3) separate guidebooks for sponsors, lead facilitators, and table facilitators/note takers to assist them in planning and leading a CSC public engagement process.
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Input from the Public Engagement Sessions Receives Consideration in the Decision Making Process Planners should establish in advance how they will give consideration to the recommendations, conclusions, and other information that emerge from the public engagement sessions, and should disclose these plans to PUBLIC ENGAGEMENT 6-3
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Prior to the public engagement sessions, it is important for sponsors to seek advice and support from community partners, including health care providers and community advocates representing the interests of various constituencies that might have unique perspectives on issues related to CSC (e.g., elders, children, people with disabilities, immigrants and refugees, geographically isolated communities)
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How Can Sponsors Achieve Diverse Community Participation? A truly inclusive public engagement process has broad participation that reflects the diversity of the community and includes at-risk, difficult-to-reach populations that are not well represented in the political process.
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People with disabilities should be recruited not only as participants but also as facilitators and note takers. What Is the Appropriate Length of a Public Engagement Session?
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and will be highly skilled at leading smallgroup discussions. They need not have prior subject matter expertise, but should commit to familiarizing themselves with the guidebook for table facilitators and note takers in the toolkit and attending a training session conducted by the sponsor or the lead facilitator prior to the public engagement session.
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However, health authorities should seek confirmation concerning this aspect of their public engagement process. 2 However, it should be noted that data collected are only representative of individuals in the room, and similar to the limitations of any public engagement exercise, may not necessary reflect the majority or consensus view for the entire community.
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The guidebook also familiarizes the lead facilitator with the context of CSC, the ethical questions to be addressed, and the design and goals of the public engagement program. Guidebook for Table Facilitators and Note Takers A table facilitator leads small-group discussions and engages participants in scenario activities.
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The methods and tools for community conversations offered in this report are a starting point for use by state, local, and regional health authorities in planning their own successful public engagement processes. W hen they are used together with information and practices gleaned from other communities across the nation that have conducted public engagement sessions to date, it is anticipated that the challenging task of incorporating community values into CSC planning will more easily be accomplished.
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2011. The Minnesota Pandemic Ethics Project: Sequenced, robust public engagement processes.
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"CRISIS STANDARDS OF CARE" IN DISASTERS AND PANDEMICS A Community Conversation SPONSOR GUIDEBOOK Developed by the Institute of Medicine of the National Academies PUBLIC ENGAGEMENT 6-13
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The sponsor guide identifies principles and strategies to assist with the planning process, while the two facilitator guides include detailed agendas, tools, and scripts for use during the sessions. Principles of Public Engagement on Crisis Standards of Care There is no single "right" way to conduct a community conversation on crisis standards of care.
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One of the values of public engagement is that it can help reveal misunderstandings, biases, and areas of deep disagreement so that sponsors can work to address these during the dissemination phase, when community stakeholders and the general public are informed of the policies that have been adopted. Input from the public engagement sessions receives consideration in the decision-making process Sponsors should establish in advance how they will give consideration to the recommendations, conclusions, and other information that come out of the community conversation, and should disclose these plans to participants at the start of each session.
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How can diverse community participation be achieved? A truly inclusive public engagement process has broad participation that reflects the diversity of the community and ensures that at-risk, hard-to-reach populations who are not well represented in the po litical process are included.
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Best practice is for each session of the public engagement process to include a mix of participants drawn from various constituencies so that participants can hear and reflect on different perspectives. That ideal can be hard to achieve, however, if people are reluctant to travel or mix outside of their immediate communities, geographic or otherwise.
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facilitators who have the experience and facilitation skills necessary to ensure the success of the conversation. Lead facilitators should be knowledgeable about crisis standards of care and the jurisdiction's crisis standards of care planning efforts, and must develop a deep understanding of the public engagement process and program materials.
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In any case, you should seek confirmation concerning the status of your particular process. Planning a Community Conversation As noted above, sponsors should consider collaborating with other area organizations that are involved in emergency preparedness or that can support the development or implementation of crisis PUBLIC ENGAGEMENT 6-19
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The lead facilitator also participates in or leads the training of table facilitators and note takers prior to the community conversation. Subject matter expert: An individual who can present an overview of crisis standards of care to partici pants and be available to answer substantive questions that arise during the community conversation.
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2011. The Minnesota Pandemic Ethics Project: Sequenced, robust public engagement processes.
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"CRISIS STANDARDS OF CARE" IN DISASTERS AND PANDEMICS A Community Conversation LEAD FACILITATOR GUIDEBOOK Including Annotated Agenda and Program Materials Developed by the Institute of Medicine of the National Academies PUBLIC ENGAGEMENT 6-23
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It includes background information on crisis standards of care; the purpose and goals of this community conversation; an annotated agenda of the day's activities; talking points and specific guidance on how to use the various program materials; copies of the surveys, scenarios, and discussion questions; and general advice on facilitation. Meaningful public engagement on this complex topic starts with community conversations like the one you are about to facilitate.
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Community conversations take place before a disaster strikes for the purpose of enabling participants to understand each other's perspectives while tackling complex issues associated with allocating scarce medical resources. What are the goals of a community conversation?
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Sup port the table facilitators as needed and answer any questions. All good facilitation relies on judgment in the moment as to how best to move the conversation, but here are various techniques and prompts that might be helpful.
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Table facilitators follow, and sometimes supplement, the instructions given by the lead facilitator. Table facilitators are given background materials and attend an orientation session to introduce them to the program design and agenda.
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Introduce leaders/facilitators Script Briefly describe topic Explain charge of the day Table Introductions and 0:10 Break ice Tool: Worksheet Exercise Take temperature -- why did they attend, what is on Table facilitators (TFs) lead introductions, note tak their minds ers (NTs)
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Ps asked to share views on what underlying values and goals should drive decisions. Earthquake Scenario Report 1:50 Give table groups chance to share key thoughts and Facilitated by LF, with one NT recording key points Out identify points of difference and intersection with on flip charts the larger group Volunteer from each table presents short summary of scenario findings -- emphasis on points of Spark larger group discussion, input agreement/disagreement, most notable Further inform, influence thinking of Ps impressions Break 2:20 Deadly Virus Scenario 2:50 Designed to elicit views on key worker status as Scenario and discussion questions Discussion criterion for resource allocation.
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Final Question and Wrap-Up 4:30 LF leads brief large-group discussion of final Big-picture question to wrap up discussion question Words from sponsor about local disaster prepared ness planning initiatives and resources, and the im- Sponsor gives brief presentation on local prepared portance of individual and community preparedness ness landscape and resources Thank Ps Evaluation 4:50 Tool: Evaluation form (ARS or paper) TF and NT offer help to participants who need it Participants Depart 5:00 Ps turn in ARS devices and receive stipends, if applicable Facilitator/Note Taker Debrief 5:15 To gather data and elicit other relevant information Led by Sponsor and LF or impressions not contained in the notes and templates Adjourn 6:00 6-33
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Thank you for coming to today's community conversation on crisis stand ards of care. I will be guiding the conversation with the help of your table facilitators.
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These groups were considered highest priority because they were most likely to get the flu and/or suffer the most severe complications. 2 Can be presented by lead facilitator or another subject matter expert.
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You will be asked to make and explain some hard choices about which patients should receive care. o Ask table facilitators to hand out the scenario and worksheets.
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Words from Sponsor o Brief presentation on local disaster preparedness planning initiatives and resources, and the importance of individual and community preparedness Wrap-up o This almost concludes our community conversation.
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Program Materials PUBLIC ENGAGEMENT 6-45
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Writing is always optional. The note takers will record key points -- but not anyone's name.
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Agree Disagree 12. A person's ability to pay should not matter 1 2 3 4 when deciding who should receive limited Strongly Agree Disagree Strongly medical resources in a crisis.
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Preparing for Disasters: The Challenge Disasters can lead to shortages 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?
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When Might We Need Crisis Standards of Care? Scarce Extreme Medical Crisis Resources • Hurricane • Blood • Flu Pandemic • Ventilators • Earthquake • Drugs • Bioterrorism • Vaccines • Staff PUBLIC ENGAGEMENT 6-51
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How Are Crisis Standards of Care Dif ferent? Focus of Normal Care Individual patient Community Focus of Crisis Care 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 6-52 CRISIS STANDARDS OF CARE
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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 6-54 CRISIS STANDARDS OF CARE
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Why or why not? For your information, see the next page for the guidance provided to table facilitators and note takers on how to conduct this scenario 6-56 CRISIS STANDARDS OF CARE
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Discussion Questions 1. Should the agency's guidelines give health care workers priority for treatment?
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For your information, see the next page for the guidance provided to table facilitators and note takers on how to conduct this scenario PUBLIC ENGAGEMENT 6-59
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" Note takers should capture "exclusion" concerns/recommendations. Remind participants of the option to put such concerns/recommendations on 3×5 cards.
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I Strongly Agree Somewhat Agree Undecided Somewhat Disagree Strongly Disagree PUBLIC ENGAGEMENT 6-61
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Which parts of this session did you find most valuable? Was there anything missing (e.g., certain information you wish we had provided, other topics you thought the survey or scenarios should have covered)
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"CRISIS STANDARDS OF CARE" IN DISASTERS AND PANDEMICS A Community Conversation GUIDEBOOK FOR TABLE FACILITATORS AND NOTE TAKERS Including Annotated Agenda and Program Materials Developed by the Institute of Medicine of the National Academies PUBLIC ENGAGEMENT 6-63
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It includes background information on crisis standards of care; the purpose and goals of community conversations like the one in which you are about to partici pate; an annotated agenda of the day's activities; copies of the surveys, scenarios, and discussion questions; general advice on facilitation and note taking; and talking points and specific guidance on how to use the various program materials. Please read this guide in its entirety before arriving at the session.
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Community conversations take place before a disaster strikes for the purpose of enabling participants to understand each other's perspectives while tackling complex issues associated with allocating scarce medical resources. What are the goals of a community conversation?
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If you don't understand someone's comment, ask for clarification. o Note takers record major themes, comments, and ideas: During table discussions, record your notes on the notepads provided After the discussion, summarize your notes on the templates provided for each activity PUBLIC ENGAGEMENT 6-67
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Do not include your own opinions in the notes 4. Facilitators and note takers are neutral for purposes of the discussions and should not offer opinions regarding the substance of the issues.
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Please know that you PUBLIC ENGAGEMENT 6-69
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Introduce leaders/facilitators Script Briefly describe topic Explain charge of the day Table Introductions and 0:10 Break ice Tool: Worksheet Exercise Take temperature -- why did they attend, what is on Table facilitators (TFs) lead introductions, note tak their minds ers (NTs)
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Ps asked to share views on what underlying values and goals should drive decisions. Earthquake Scenario Report 1:50 Give table groups chance to share key thoughts and Facilitated by LF, with one NT recording key points Out identify points of difference and intersection with on flip charts the larger group Volunteer from each table presents short summary of scenario findings -- emphasis on points of Spark larger group discussion, input agreement/disagreement, most notable Further inform, influence thinking of Ps impressions Break 2:20 Deadly Virus Scenario 2:50 Designed to elicit views on key worker status as Scenario and discussion questions Discussion criterion for resource allocation.
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6-72 Final Question and Wrap-Up 4:30 LF leads brief large-group discussion of final Big-picture question to wrap up discussion question Words from sponsor about local disaster prepared ness planning initiatives and resources, and the im- Sponsor gives brief presentation on local prepared portance of individual and community preparedness ness landscape and resources Thank Ps Evaluation 4:50 Tool: Evaluation form (ARS or paper) TF and NT offer help to participants who need it Participants Depart 5:00 Ps turn in ARS devices and receive stipends, if applicable Facilitator/Note Taker Debrief 5:15 To gather data and elicit other relevant information Led by Sponsor and LF or impressions not contained in the notes and templates Adjourn 6:00
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Program Materials and Table Facilitator/Note Taker Guidance PUBLIC ENGAGEMENT 6-73
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0:50 Presentation on CSC and Q&A 1:10 Earthquake Scenario Discussion See program materials for detailed guidance on this scenario See program materials for facilitation hints and prompts Distribute earthquake scenario to table participants TF -- Lead table through scenario NT -- Record notes on template Select participant to give report-out Collect ranking chart 1:50 Earthquake Scenario Report-Out 2:20 Break 2:50 Deadly Virus Scenario Discussion See program materials for detailed guidance on this scenario See program materials for facilitation hints and prompts Distribute earthquake scenario to table participants TF -- Lead table through scenario NT -- Record notes on template Select participant to give report-out 3:30 Deadly Virus Scenario Report-Out 4:00 Postsurvey and Discussion 4:30 Final Question and Wrap-Up 4:50 Evaluation Distribute and collect evaluation forms 5:00 Participants Depart Thank participants 5:15 TF/NT Debrief 6:00 Adjourn
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Writing is always optional. The Note Takers will record key points -- but not anyone's name.
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Agree Disagree PUBLIC ENGAGEMENT 6-77
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Agree Disagree 12. A person's ability to pay should not matter 1 2 3 4 when deciding who should receive limited Strongly Agree Disagree Strongly medical resources in a crisis.
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Why or why not? For your information, see the next page for the guidance provided to table facilitators and note takers on how to conduct this scenario 6-80 CRISIS STANDARDS OF CARE
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Note Taker Template Earthquake Scenario 1. Treatment priorities [Collect patient ranking charts from participants and attach to this template]
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Why or why not? Major themes: Minor themes of note: PUBLIC ENGAGEMENT 6-83
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Discussion Questions 1. Should the agency's guidelines give health care workers priority for treatment?
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For your information, see the next page for the guidance provided to table facilitators and note takers on how to conduct this scenario PUBLIC ENGAGEMENT 6-85
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" Note takers should capture "exclusion" concerns/recommendations. Remind participants of the option to put such concerns/recommendations on 3×5 cards.
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b) Is it important for all hospitals and clinics in the city to follow the same rules when deciding which patients to treat?
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I Strongly Agree Somewhat Agree Undecided Somewhat Disagree Strongly Disagree PUBLIC ENGAGEMENT 6-89
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Which parts of this session did you find most valuable? Was there anything missing (e.g., certain information you wish we had provided, other topics you thought the survey or scenarios should have covered)
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Introductory Slides 6-92 CRISIS STANDARDS OF CARE
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"Crisis Standards of Care" A Community Conversation [Location]
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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?
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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?
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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.
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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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The old OR the young? Healthcare workers and other emergency responders?
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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
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