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1Director, Bishopric Medical Library Sarasota Memorial Hospital Ethics and DisastersPatricia ReynoldsDirector, Bishopric Medical Library Sarasota Memorial HospitalSarasota, FL
2Ethics and Disasters: a topic of epic proportions Disasters and emergencies are:International and localMulticultural, multi-ethnic, multi-religiousEnvironmental and man madeInvolve governments, NGO’s, corporations, victims, workers, and the pressEthics implications are at the core of preparation, policies, response and recovery
3Ethics and Disasters What is a disaster? Why do we need to know the ethical basis of disaster preparation and response?What is special about disasters that motivates people to act and respond ethically? How is this manifested?What are the relevant ethical principles that form the basis of our actions and reactions?
4What is a Disaster?“A disaster is an event (or series of events) that harm or kills a significant number of people or otherwise severely impairs or interrupts their daily lives in civil society. Disasters may be natural or the result of accidental or deliberate human action. Disasters include, but are not limited to, fires; floods ; storms; earthquakes; chemical spills; leaks of, or infiltration by, toxic substances; terrorist attacks by conventional, nuclear or biological weapons; epidemics; pandemics; mass failures in electronic communications; and other events that officials and experts designate “disasters””“Disasters always occasion surprise and shock; they are unwanted by those affected by them, although not always unpredictable. Disasters always generate narratives and media representations of the heroism, failures and losses of those who are affected and respond.”Zack, N. (2009). Ethics for disaster. Lanham, Maryland: Rowman & Littlefield Publishers, Inc.
5EmergenciesEmergencies are typically local and can be dealt with local resourcesEmergencies are typically of a shorter durationA declaration of a state of emergency is usually done for disasters – not emergencies.
6Our Social Contract“Government has an obligation, based on the justification of its origins, to prepare citizens for survival in second states of nature caused by disaster. Such preparation requires implementation through public policy.” John LockeThese rights are presumed in the US Declaration of Independence and protected by the first ten amendments of the constitution.Zack, N. (2009). Ethics for disaster. Lanham, Maryland: Rowman & Littlefield Publishers, Inc.
7What is special about disasters that motivates people to act and respond ethically? Basic human values ofCompassion,Empathy,Respect for dignity of othersProfessional codes of conduct“There but for the grace of God, go I”More??
8Ethical theories and ethical principles Ethics is not about what is - but what should be.Ethical relativism: morality varies between people and societies according to their cultural normsUniversalist or objectivist moral theories: fundamental principles that are invariant through out time and space.“People have a basic right to safety and it is a fundamental obligation of all governments to ensure that their citizens are protected to a reasonable degree from known risk, and that citizens are informed and warned of any risks known to governmental officials that threaten public safety.”“To respect the equal dignity of all human beings, recognizing a basic right to life and subsistence”“The condemnation of coarse public sector corruption”“The obligation to respect human autonomy”The Search for Principles of Disaster Management. Etkin D, Davis I,
9Relevant Ethical Principles Substantive PrinciplesIndividual libertyProtection of the public from harmProportionalityPrivacyDuty to provide careReciprocityEquityTrustSolidarityStewardshipProcedural PrinciplesReasonableOpen and transparentInclusiveResponsiveAccountable“Stand on Guard for Thee. Ethical considerations in preparedness planning for pandemic influenza”. A report of the University of Toronto Joint Centre for Bioethics Pandemic Influenza Working Group. 2005
10General Ethical Principles SolidarityJoint responsibilityNon-discriminationHumanityImpartialityNeutralityCo-operationTerritorial sovereigntyPreventionFairnessRespect for personLimiting harmRole of the media
12Hippocratic Oath – classic 1 I swear by Apollo Physician and Asclepius and Hygieia and Panaceia and all the gods and goddesses, making them my witnesses, that I will fulfill according to my ability and judgment this oath and this covenant:To hold him who has taught me this art as equal to my parents and to live my life in partnership with him, and if he is in need of money to give him a share of mine, and to regard his offspring as equal to my brothers in male lineage and to teach them this art—if they desire to learn it—without fee and covenant; to give a share of precepts and oral instruction and all the other learning to my sons and to the sons of him who has instructed me and to pupils who have signed the covenant and have taken an oath according to the medical law, but no one else.I will apply dietetic measures for the benefit of the sick according to my ability and judgment; I will keep them from harm and injustice.I will neither give a deadly drug to anybody who asked for it, nor will I make a suggestion to this effect. Similarly I will not give to a woman an abortive remedy. In purity and holiness I will guard my life and my art.
13Hippocratic Oath – classic 2 I will not use the knife, not even on sufferers from stone, but will withdraw in favor of such men as are engaged in this work.Whatever houses I may visit, I will come for the benefit of the sick, remaining free of all intentional injustice, of all mischief and in particular of sexual relations with both female and male persons, be they free or slaves.What I may see or hear in the course of the treatment or even outside of the treatment in regard to the life of men, which on no account one must spread abroad, I will keep to myself, holding such things shameful to be spoken about.If I fulfill this oath and do not violate it, may it be granted to me to enjoy life and art, being honored with fame among all men for all time to come; if I transgress it and swear falsely, may the opposite of all this be my lot.Translation from the Greek by Ludwig Edelstein. From The Hippocratic Oath: Text, Translation, and Interpretation, by Ludwig Edelstein. Baltimore: Johns Hopkins Press, 1943.
14“Ethical Directives for the Practice of Medicine 1” Encyclopedia of Bioethics 3rd ed. Post, Stephen G. 2004Encyclopedia of Bioethics 3rd ed. Post, Stephen G. 20044th century B.C.E – Early 20th centuryOath of Hippocrates 4th century B.C.E.Oath of initiationOath of AsaphAdvice to Physician17 Rule of EnjuinFive Commandments and Ten Requirements 1617A Physician’s Ethical Duties from Kholasah al HekmanDaily Prayer of a Physician (prayer of Moses Maimonidies) 1793Code of Ethics AMA 1847Venezuelan Code of Medical Ethics, National Academy of Medicine 1918
15“Ethical Directives for the Practice of Medicine 2” Encyclopedia of Bioethics 3rd ed. Post, Stephen G. 2004Declaration of Geneva, World Medical Assoc 1948Intl Code of Medical Ethics 1949Principles of Medical Ethics AMA 1957Declaration of Professional Responsibility: Medicine’s social contract with humanity AMA 2001Charter on Medical Professionalism (2002) ABIM, ACP, etcCode of Ethics, Am Osteopathic Assn 1998Code of Ethics and Guide to Ethical Behaviour of physicians. Canadian Medical Assoc 1996; New Zealand Medical Assoc. 2002Chile – 1983BrazilNorway – 2000Japan 1991Oath of Soviet Physicians 1971Solemn Oath of a Physician of Russia 1992Regulations on Criteria for Medical Ethics and their Implementation – China – 1988Ethical and Religious Directives for Catholic Health Facilities – rev. 2001Health Care Ethics Guide, Catholic Health Assoc. of Canada 1991Oath of a Muslim Physician, Islamic Medical Assoc. of North America 1977Islamic Code of Medical Ethics, Kuwait Document, Islamic Organization for Medical Sciences 1981
16Global EthicsHuman Rights first explicitly declared internationally in 1948 in the United Nations’(UN’s) Declaration of Human Rights.Not an international law – global paradigmUnited Nations CharterHealth for All in the 21st Century” World Health Organization (WHO)1985 Tokyo Declaration by the World Medical Association against physicians being involved in torture1988 United Nations Resolution, the “Right to Intervene”International Humanitarian Law (IHL) (IHL comprises the Geneva Conventions and the Hague Conventions)The Helsinki Declaration protects the patients’ rights and integrity with regard to research. Ethics Landmark but not practical for disastersendorsed at the General Assembly of the World Medical Association in Helsinki, Finland in 1964HEALTH DISASTER MANAGEMENT Guidelines for Evaluation and Research in the Utstein Style Chapter 8: Ethical issues. Prehosp Disast Med 2002;17(Suppl 3):128–143.
17Professional codes of ethics “Professions governed by Codes of Ethics approved by their members function on the assumption that these codes will not be violated in practice. When they are violated, practitioners may be guilty of malpractice, incurring criminal as well as civil and professional, penalties”Zack, Naomi Ethics for Disaster, 2009 Rowman & Littlefield Publishers.Series: Studies in Social, Political, and Legal Philosophy
18Complex times Famine in Africa Exportation of hazards constitutes an ethical issue and also, from time to time, a legal issue. BhopalFamine in Africa
19SolidarityDeliberate and freely chosen unity among certain, groups or populations. This presupposes the awareness of unity and the acceptance of the consequences of unity. “When referring to healthcare, solidarity means the obligation to share the financial risks of illness and handicap with others not necessarily of one’s own social group.”“Solidarity of interests is based on the principle of reciprocity: people share risks that are common to each other”The principles of solidarity will be particularly applicable to memorandums of understanding with local organizations.
20Joint Responsibility and Non-discrimination Emergency management is not solely the domain of emergency management agencies; rather, it is a shared responsibility between governments, communities, businesses and individuals.Non-discrimination Non-discrimination Principles of the Law (FEMA)Federal civil laws rights in Section VI of this Guide require equal access for, and prohibit discrimination against, people with disabilities in all aspects of emergency planning, response, and recovery. To comply with Federal law, those involved in emergency management should understand the concepts of accessibility and nondiscrimination and how they apply in emergencies.
21The Guiding Principles on Internal Displacement The Guiding Principles seek to protect all internally displaced persons in internal conflict situations, natural disasters and other situations of forced displacementUnanimously adopted by The UN Commission and the General AssemblyInternally displaced persons shall enjoy, in full equality, the same rights and freedoms under international and domestic law as do other persons in their country.These Principles shall be applied without discrimination of any kind, such as race, color, sex, language, religion or belief, political or other opinion, national, ethnic or social origin, legal or social status, age, disability, property, birth, or on any other similar criteria.Certain internally displaced persons, such as children, especially unaccompanied minors, expectant mothers, mothers with young children, female heads of household, persons with disabilities and elderly persons, shall be entitled to protection and assistance required by their condition and to treatment which takes into account their special needs.Hurricane Katrina, New Orleans
22ImpartialityThe American Red Cross, as a member of the International Red Cross and Red Crescent Movement, adheres to the Fundamental Principles of the International Red Cross and Red Crescent Movement.Specifically, the Principle of Impartiality states, “It makes no discrimination based upon nationality, race, religious beliefs, class, or political opinions. It endeavors to relieve the suffering of individuals, being guided solely by their needs, and to give priority to the most urgent cases of distress.”
24Code of Conduct for International Red Cross The Code of Conduct for International Red Cross and Red Crescent Movement and NGOs in Disaster Relief was drawn up in 1992 by the Steering Committee for Humanitarian Response to set ethical standards for organizations involved in humanitarian work. In 1994, the SCHR adopted the code and made the signing of it a condition for membership in the alliance.492 Signatories as of now
25Standard of Care 1 What is the meaning of “standard of care”? How did Hurricane Katrina affect our understanding of the ethical implications of Standard of care?How is the concept of triage affected by crisis standards of care?What are the legal implications of crisis standards of care ?
26Standard of Care 2The Standard of Care is a case- and time-specific analytical process in medical decision-making, reflecting a clinical benchmark of acceptable quality medical care. This benchmark, which is used to evaluate and guide the practice of medicine, encompasses the learning, skill and clinical judgment ordinarily possessed and used by prudent health care providers or payors of good standing in similar circumstances.The standard of care must reflect the art (consensus of opinion of clinical judgment) and science (published peer reviewed literature) of medicine and must be uniform for all health care personnel whether they are providing direct clinical care or reviewing the medical necessity of past, present or future medical care.A violation of standard of care may result in under-utilization of medical care, but also occurs when unnecessary care (over-utilization) is provided.The standard of care has a national and clinical basis, rather than a local provider community or payor review basis.American College of Medical Quality, policy 3
27Crisis Standards of Care 2009 – Institute of Medicine and the AHRQ sought national public input in creating a unified standard of care for disaster and emergencies.Originally called Altered Standards of Care – changed to Crisis Standards of Care for legal reasonsCrisis Standards of Care: Summary of a Workshop Series 2009
28Recommendations 1:Develop consistent state crisis standards of care protocols with 5 key elementsA strong ethical groundingIntegrated and ongoing community and provider engagement, education and communicationAssurances regarding legal authority and involvementClear indicators, triggers and lines of responsibilityEvidence based clinical processes and operationsIOM: Guidance for Establishing Crisis Standards of Care for Use in Disaster Situations: A Letter Report 2009
29Recommendations 2: Seek community and provider engagement special attention should be given to vulnerable populationsAdhere to ethical norms during crisis standards of care.Conditions of overwhelming scarcity limit autonomous choices for both patients and practitioners regarding the allocation of scarce resources, but do not permit actions that violate ethical normsProvide necessary legal protections for healthcare practitioners and institutions implementing crisis standards of careEnsure consistency in crisis standards of care implementationTriage teams, etc , Palliative care, Mental health support, Attention to vulnerable populations, Real time information sharingEnsure intrastate and interstate consistency among neighboring jurisdictions
30Institute of MedicineGuidance for Establishing Crisis Standards of Care for Use in Disaster Situations – Letter Report 2009Crisis Standards of Care: A Systems Framework for Catastrophic Disaster Response -2012vital templates to guide the efforts of professionals and organizations responsible for CSC planning and implementations
32“Crisis Standards of Care” A Community Conversation
33Disaster” Defined How do disasters differ? What do disasters have in common?How do disasters differ?People’s needs exceed available resourcesHelp cannot arrive fast enoughSome are long-lasting and widespread (flu pandemic)Others are sudden and geographically limited (earthquake, terrorist attack)
34Preparing for Disasters: The Challenge Disasters can lead to shortages of critical medical resourcesShortages 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 needHow do we give the best care possible underthe worst possible circumstances?
36The Response: “Crisis Standards of Care” 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.
37When Might We Need Crisis Standards of Care? Extreme CrisisHurricaneFlu PandemicEarthquakeBioterrorismScarce Medical ResourcesBloodVentilatorsDrugsVaccinesStaff
38How Are Crisis Standards of Care Different? Focus of Normal CareFocus of Crisis Care
39Possible Reasons for Crisis Standards of Care To make sure that critical resources go to those who will benefit the mostTo prevent hoarding and overuse of limited resourcesTo conserve limited resources so more people can get the care they needTo minimize discrimination against vulnerable groupsSo all people can trust that they will have fair access to the best possible care under the circumstances
40Possible Strategies to Maximize Care SpacePut patient beds in hallways, conference rooms, tentsUse operating rooms only for urgent casesSuppliesSterilize and reuse disposable equipmentLimit drugs/vaccines/ventilators to patients most likely to benefitPrioritize comfort care for patients who will dieStaffHave nurses provide some care that doctors usually would provideHave family members help with feeding and other basic patient tasks
41First-come, first-served? Lottery? When there isn’t enough to save everyone… how should we decide who gets what?Some options--First-come, first-served?Lottery?Save the most lives possible by giving more care to people who need it the most?Favor certain groups?The old OR the young?Healthcare workers and other emergency responders?Workers who keep society running (utility workers, transportation workers, etc.)?
42Where Do You Come In? Community Conversations help policy makers: Understand community concerns about the use of limited medical resources during disastersDevelop crisis standards of care guidelines that reflect community values and priorities
43Preparing for Disaster Crisis Standards of Care (“CSC”)--- a piece of the puzzle
44The Deadly Choices at Memorial By SHERI FINK Aug 25, 2009 New York Times Which of the following ethical considerations do not apply to the Pou caseInformed ConsentImmunity for healthcare workersPalliative careAllocation of scarce resourcesNeutrality
45What type of evacuation triage was set up in Memorial? Sickest firstLotterySickest lastRandom selection
46Ethical Principles Applied Prior to Disasters Introduction of prevention measuresImportance of good quality healthy environmentEducation, training and awareness raisingParticipation – public input at national and local levelFreedom of expressionAccess to justiceDisaster prevention at the workplaceDisaster prevention in recreation and tourist areasDisaster prevention in public places – schools and hospitalsSpecial prevention measures for the most vulnerable groupsOrganization of and participation in emergency drillsPreventive evacuation of populationsEthical Principles on Disaster Risk Reduction and People’s Resilience, Prieur M. European and Mediterranean Major Hazards Agreement (EUR-OPA)
47Preparing for different types of disasters PandemicsNatural disastersBurns, bombs and explosionsBiologicalterrorism
48Preparations Random Selection – Lottery As part of the preparation, planning must occur before a disaster to help alleviate any influences by immediate pressures that could cloud moral judgment.The planning must be general in scope, but not too general that morally or factually is vacuous.The planning ought to express our best moral principles and not go against them and be practical and possible to execute.Make the plan optimistically and not violate existing moral principles.
49Community Strategy for Pandemic Influenza Mitigation http://www
50Ethical Approach to Allocation of Scarce Resources and Triage Fairness – inherently just to all individualsDuty to care duty to steward resourcesDuty to attempt to obtain best outcome for the greatest number of patients with available resources – does not mean save the most lives – a comfortable death may be a good outcome.TransparencyConsistencyProportionalityAccountabilityHick JL, Hanfling D, Cantrill SV. Allocating scarce resources in disasters: emergency department principles. Ann Emerg Med Mar;59(3): Epub 2011 Aug 19. Review. PubMed PMID:
51Public Health Decision Making Concerned with populations rather than individualsUtilitarian: greatest good for the greatest numberPublic health interventions must be necessary and effective to address the public health issue based on currently available informationPublic health authorities must use least restrictive alternative intervention availableBenefits and burdens of public health decisions should be distributed equitably among society: “equitable distribution”Need for a fair process and transparency in decision making
52Principles of Allocation Principle of social worth – people who have instrumental value – healthcare workers, government, etcRandom Selection – LotteryPrinciple of fair chances – anyone needing resources gets them until they run outAllocations based on age, overall health or disability – seeks to maximize quality life yearsLife Cycle principle – child would receive preferenceAllocate resources to those most likely to survive to hospital dischargeSickest firstResources may be used on those most likely to die
53ADA and Rehabilitation Act Value judgments about the worth and quality of human life have the potential to play prominent roles in allocation decisions.Disabled citizens, because of their special needs and compromised health status have a greater potential for catastrophic outcomes.State and Federal legislation directs public health and emergency officials to take the needs of disabled explicitly into account when planning for public health emergencies.Wendy F. Hensel & Leslie E. Wolf, Playing God: The Legality of Plans Denying Scarce Resources to People with Disabilities in Public Health Emergencies Florida Law Review
54Legal MandatesTitles II and III of the Americans with Disabilities Act and § 504 of the Rehabilitation Act broadly preclude discrimination against people with disabilities on the basis of their impairments.All public hospitals and service providers are covered under Title II of the ADA, which precludes states, local governments, and their agents from discriminating against qualified individuals with disabilities in the provision of any service, program, or activity.The regulations define discrimination to include providing ―an aid, benefit, or service that is not as effective in affording equal opportunity to obtain the same result, to gain the same benefit, or to reach the same level of achievement‖ as that provided to people outside of the protected class.The regulations also prohibit the imposition or application of eligibility criteria that screen out or tend to screen out an individual with a disability or any class of individuals with disabilities from fully and equally enjoying any service, program, or activity, unless such criteria can be shown to be necessary for the provision of the service, program, or activity being offered.The Stafford Act enforces non discrimination on grounds of race, color, religion, nationality, sex, age and disability
55Reasons for excluding disabled in algorithms Individuals will need resources for prolonged period of useThey are deemed to have a poor quality of life post-treatmentThey have a limited long term prognosis as a result of their disabilitiesThe same exclusions that might apply to non-disabled may affect the disabled: neuro and cognitive impairments, etc
56Ethical Principles Applied During Disasters 1 Humanitarian assistanceInformation and participation during disastersCompulsory evacuation of populationsRespect of dignityRespect of personsEmergency assistance for the most vulnerable personsThe importance of rescue workersMeasures to safeguard and rehabilitate the environmentNecessary measures to safeguard and restore social tiesEthical Principles on Disaster Risk Reduction and People’s Resilience, Prieur M. European and Mediterranean Major Hazards Agreement (EUR-OPA)
57Ethical Issues During a Pandemic Health workers continue to provide care during a communicable disease outbreakRestricting liberty – quarantineAllocation of scarce resources – e.g. vaccineGlobal governance: travel advisories
58Ethical Principles Applied after Disasters 2 Strengthening resilience to the effects of disastersProtection of economic, social and cultural rightsProtection of civil and political rights
59Who will request or need Ethical Information such as this? Hospital emergency management committeesBioethics committeesPublic Health agencies and departmentsLocal emergency management command centers, to include Police, Fire, EMSPhysician and nursing education opportunitiesPresentations to local Nursing homes and Assisted Living facilities, etc.Presentations to local faith based and minority organizations
60Community Organizations Active in Disaster The purpose of the Sarasota COAD is to advocate for and promote a coordinated countywide disaster preparedness planning initiative that aims to integrate human services agencies and faith-based organizations into the county’s disaster preparedness system. The initial focus of the committee is to support the design and adoption of standardized disaster plans that ensure common response goals and written coordination and communication procedures, linking those agencies to the county’s Comprehensive Emergency Management Plan (CEMP).
61Special ThanksNaomi Zack, PhD for permission to use her book on our web siteStaff at DIMRC: Cindy Love, Siobhan Champ-BlackwellStaff at MLA: Debra Cavanaugh and Jenny PierceStephanie Bauer, Ph.D. Univ. of Alaska, AnchorageMost especially, Barbara Folb