All partners who can contribute to action as a public health system should be encouraged to assess their roles and responsibilities, consider changes, and devise ways to better collaborate with other partners. They can transform the way they “do business” to better act to achieve a healthy population on their own and position themselves to be part of an effective partnership in assuring the health of the population.
Introduction
Our aim in this chapter is to provide an orientation for the future exploration of ethical issues in public health emergency preparedness and response [hereafter referred to simply as “emergency preparedness”]. Much work has been done in the past decade on specific ethical issues that arise in the context of certain facets of emergency preparedness, such as the ethics of allocating scarce resources like vaccines or emergency equipment, and the ethical issues that arise in relationship to infectious disease, such as influenza [Annas, Mariner, & Parmet, 2008; Battin, Francis, Jacobson, & Smith, 2009; DeBruin et al., 2010; Garrett, Vawter, Prehn, DeBruin, & Gervais, 2008; Kinlaw, Barrett, & Levine, 2009; Meslin, Alyea, & Helft, 2007; University of Toronto Joint Centre for Bioethics, 2005; Vawter, Gervais, & Garrett, 2008; Verweij, 2006; World Health Organization, 2007]. In addition, a significant social scientific literature exists on factors concerning the response and recovery of social systems to crisis situations. These sociological theories and empirical studies certainly have value implications, but they rarely engage in explicit ethical analysis.1
The aim of this chapter is to consider what kind of activity public health emergency preparedness as a whole is and to ask what ethical goals should orient an activity of that kind [Zack, 2009]. More specifically, we identify a particular perspective from which to view the complexity of emergency preparedness, and that perspective involves seeing emergency preparedness as a civic practice. The notion of a “practice” is a special term of art in philosophical and social scientific studies of purposeful human agency [MacIntyre, 2007; Schön, 1984; Schön & Rein, 1997]. It refers to a complex form of social activity that is systematic, rule-governed, and has definable inherent values. A practice can be said to achieve [or fail to achieve] instrumentally certain social goods external to it, and, in its pursuit of those external objectives, the practice can also realize [or fail to realize] its own internal or inherent values. A practice can be either private or public, individualistic or civic. A “civic practice” is one that pertains to and affects not only the rights and interests of private individuals, but also the common good: the values and obligations of the community as a whole. Manifestly, public health emergency preparedness has societal as well as individual significance and is a civic rather than a private form of practice. Preparedness is something that citizens enact, not something that individuals purchase and consume.
In this analysis, we single out for special discussion seven social goods [beneficial objectives] that constitute ethical goals of public health emergency preparedness as a civic practice. These are goals that we believe are pertinent to an ethical evaluation of how the practice of emergency preparedness should be conducted regardless of the specific type of hazard or emergency in question.
As research on public health ethics and on the ethics of various areas of emergency preparedness develops, it is becoming standard to identify and embrace variously described “frameworks” of ethical principles or standards. We do not follow this approach in this chapter. The norms and values—the ethical goals and social goods—we analyze are not general moral rules or imperatives that are designed to produce a certain outcome or to arrive ethically at a particular destination: the right answer or the right action. Instead of focusing on the right destination, these goals and goods focus on the appropriate ethical orientation. They concern not so much the end points, but the compass points of ethical emergency preparedness. We also intend to pay attention to certain domains, such as community capacity and resilience, community participation, civic responsibility, and public trust. These topics are of central importance to emergency preparedness, but, although they are often addressed from an explanatory social scientific perspective, they have not been adequately addressed from an explicitly ethical or normative point of view.
In sum, we focus not on abstractly conceived ethical principles, but on ethical goals or social goods that should be understood in reference to the distinctive type of practice that emergency preparedness planning constitutes. In many ethical analyses in the field of bioethics, abstract, general principles are applied to specific situations or cases that are often treated as static snapshots of decision-making rather than as an ongoing narrative or drama unfolding, often surprisingly, over time. However, analysis based on general ethical principles rarely provides practical guidance for public health practitioners immersed in an emergency response in which decisions must be made quickly amid quickly evolving information and circumstances. In light of this, it is all the more important to grasp emergency preparedness as a dynamic activity, a form of practice with external goals and inherent values.
This enables us to do two things. First, it provides an ethical conception of emergency preparedness as a whole, brought about by the coordination of many groups, disciplines, and interests and drawing on numerous bodies of knowledge and expertise. This is a study of what may be called the ethics of emergency preparedness; that is, an account of its moral point and human value, an account of why it is an activity that should be engaged in at all. Second, it opens the door to an exploration of what might be called the ethics in emergency preparedness; that is, the specific moral dilemmas, choices, and quandaries that arise in the course of actually doing emergency preparedness. It addresses particular aspects of preparedness and response plans and specific decisions that planners and communities have to make that require balancing many diverse and sometimes conflicting values.
This chapter has nine sections. We begin with a brief reflection on why an ethical perspective is crucial in emergency preparedness. We then offer a commentary on the main ethical goals and social goods of emergency preparedness. Subsequent sections address the protection of life and health, the value of individual liberty and ethical justifications for its restriction in the context of emergency preparedness, justice and preparedness, ethical responsibilities toward persons and groups with special vulnerability, communication and civic participation, professional obligations and divided loyalties for health professionals, and civic responsibility or emergency citizenship. Finally, we offer some recommendations on reasonable decision-making in emergency preparedness planning and response. Many of these issues are analyzed in greater detail by other authors in subsequent chapters of this book.
Why Ethics Matters
In order to reduce disease and promote health, public health must be an agent of change—behavioral change among individuals and institutional change in societies. Such change is never easy, even when unusual loss of life, injury, severe illness, and social disruption are threatened. Existing patterns of individual behavior and social institutions are embedded in structures of power and in social expectations and cultural norms. Behavioral and institutional change, no matter how seemingly urgent and reasonable, still requires ethical justification. This is because the principal goals of public health—security, safety, health, and well-being—must be balanced with other important values. Ethical justification is also required for emergency public health measures because, for the most part, public health and public safety authorities must rely on voluntary compliance by large numbers of people, and voluntary behavior change in turn depends on the fact that people see good reasons for their compliance, including good ethical reasons.
Ethical reasoning and sensitivity is always important in public health, but it is especially important in the sensitive and complex area of public health emergency preparedness. Indeed, the requirements of ethical justification in the context of emergency preparedness are quite demanding, and the ethical stakes are high because changes required are often disruptive and momentous, they may be financially costly, and they usually involve some form of state action. They involve the creation of legal sanctions and enforcement, the creation of administrative structures, the investment and allocation of resources, and the mobilization of popular support [Hanfling, Altevogt, Viswanathan, & Gostin, 2012; O’Mathúna, Gordijn, & Clarke, 2014].
When considering ethics in emergency preparedness, decision-making with incomplete or imperfect knowledge and under pressure of time is one of the central concerns. Sound factual information is one foundation for ethically justified decision-making. Careful, thorough, and deliberate assessment of options is another. In the real world of emergency response, and even in the less pressured situation of prior emergency preparedness planning, both of these prerequisites of ethical decision-making may be compromised. But plans must be drawn, decisions and actions must be taken nonetheless [Knobler, Mack, Mahmoud, & Lemon, 2004a].
To be sure, facts in and of themselves rarely drive or compel decisions because factual information requires assessment and evaluation, and judgments of value inevitably enter into the interpretation of facts and their meaning [Smith, 2013]. “Judgment,” as we use it here, is a general term covering such things as assessment, estimation of risk and probability, conjecture, understanding of human motivation and behavior, sensitivity to cultural or symbolic meaning, discernment, taste, a sense of propriety, and the tacit knowledge [“intuition”] that comes from experience [Schön & Rein, 1997]. Without judgment, facts are of limited use and provide little guidance. If public health planning without facts is like sailing in a fog, planning without judgment is like sailing without a rudder.
In describing and analyzing facts, the notion of special training and expertise has an obvious application, and it can be strong enough to warrant granting special power and authority to those who possess it. In matters of judgment, however, the notion of expertise as the possession of a small and definable group of persons is much more dubious. This means that public health planning is always a compound of expertise and common sense—trained analytical knowledge and knowledge gained from experience; technical science and “street science” [Corburn, 2005; Fain, Viswanathan, & Altevogt, 2012; Scarry, 2011; Wizemann, Reeve, & Altevogt, 2013a]. This is one of the reasons for embracing the civic model of the practice of emergency preparedness rather than the consumerist model. Emergency preparedness has an impact not only on the health and safety of individuals, but also on their liberty, autonomy, civil and human rights, property, and other fundamental interests. Emergency preparedness planning must face the occasional necessity of directing people to behave in a certain way during an emergency to protect the health interests of the population and to promote their own best interests, even if they are inclined to behave in other ways.
“Paternalism” is the term used to convey the notion of a restriction of an individual’s freedom of choice for the sake of protecting or promoting that individual’s best interests. Emergency preparedness is inherently prone to paternalism because one of its basic missions is to guide behavior during an emergency in such a way that long-term interests prevail over short-term interests. The inclination of many people will be to resist the actions that sound emergency preparedness calls for and to behave with other ends in view. People may want to be together with others during an outbreak of infectious disease when they should isolate themselves. They may want to leave their homes and flee when they would be safer, and emergency efforts would be more effective, if they stayed off the roads. Or some may want to stay home, which feels safe and familiar, in order to protect their belongings or their pets when the safest course is to evacuate. People may seek medicines that are inappropriate for them to take or unjust for them to hoard. They may act on the basis of rumor, unreliable or false information, or on the basis of irrational thinking concerning risk. Emergency preparedness must foresee these understandable but nonetheless counterproductive behaviors, and it must somehow prevent or at least discourage them.
These unavoidable paternalistic aspects of emergency preparedness alone would be enough to make it a subject warranting close ethical attention. American culture has strongly anti-paternalistic currents within it. Americans value individual freedom of choice and self-reliance. They are suspicious of authority, not deferential to it or cowed by it. In the past generation, the American public has come to the point where it no longer believes that “father knows best,” much less that doctor knows best, and even less that health commissioner knows best. In addition, many Americans are skeptical of uses of power that claim to be in the best interests of the powerless or in the public interest but all too often seem to serve the interests of the powerful.
This is not to say that during an emergency most people will not comply with emergency regulations and directives; that they will not turn to their leaders, experts, and other authorities for protection and guidance; or that they will not be willing to forgo significant personal liberty in return for a promise of greater protection and safety. When their community is threatened, people even in a privacy-oriented and individualistic culture will volunteer, feel a sense of solidarity, and make sacrifices for each other and for the common good [Keystone Center, 2007; King’s Fund, 2004; Solnit, 2009]. However, the individualism of American culture, reinforced by ethical systems that stress autonomy, rights, and civil liberties, will have an impact, especially on the planning and recovery phases of emergency preparedness. In the planning phase, directives that restrict liberty must be fully explained and justified. In the aftermath or recovery phase of a public health emergency, experience shows that solidarity and self-sacrifice often give way to disillusionment, recrimination, and even litigation. It is probably in the nature of any emergency plan that it cannot protect [or please] all of the people all of the time. To offset this, it is important to have ongoing monitoring of the use of authority and power during the implementation of emergency plans. This is to ensure that power and authority are not abused [“Who watches the guardians?”] and that coercive measures were justified under the circumstances. Ongoing and post-crisis evaluation and assessment are also important to gauge the effectiveness of emergency plans, to learn from mistakes, and to make improvements for the future.
Throughout this chapter, we argue in favor of public health approaches that employ the least restrictive alternatives, community involvement, and transparent communication. Nonetheless, the use of coercion and secrecy—or deliberately withholding information from the public—although they should be avoided if possible and as a general rule cannot be morally ruled out categorically. Their ethical justification in particular instances will be a matter of context and circumstance [Conly, 2013; Gaylin & Jennings, 2003]. Mandatory evacuation measures or quarantine may be unavoidable and ethically justified under extreme circumstances. Withholding information from the public may be necessary in order to prevent panic and counterproductive behavior on a large scale. It is precisely because measures may be taken in emergencies that would ordinarily be unacceptable in normal times that it is so important that public health planners not wait for disaster to strike before trying to work out a viable scheme of priorities [Knobler et al., 2004b]. The role of ethics in the planning phase before a crisis, as in the recovery phase afterward, is to define reasonably just, humane, and responsible parameters for action and decision-making. Even within those parameters, there is no way to ensure that moral mistakes will not be made, but emergency planners and responders must always be prepared to be accountable for their conduct in terms of the good reasons that they had for deciding and acting as they did [Walzer, 1973].
Two Understandings of Emergency Preparedness: Civic and Consumerist
Aside from the fact that public health emergencies may require some paternalistic measures, a more fundamental question arises about the civic and democratic implications of emergency response. There is a tendency to see emergencies as requiring the centralization of top-down authority and to see emergency preparedness as outside normal democratic governance. The so-called emergency exception is the legal suspension of the rule of law [Agamben, 2005; Brōckling, Krasmann, & Lemke, 2010]. However, this authoritarian command model of decision-making both underestimates the capacity for responsible conduct and social coordination that exists in nonemergency periods, and it exaggerates the necessity for the extralegality of the emergency exception in times of crisis and peril [Gostin, 2003; Honig, 2009; Jennings, 2003; Lukes, 2006; Scarry, 2011].
The continuing viability of ordinary ethics during extraordinary times is a theme that is central to our notion of emergency preparedness as a civic practice. The ethical acceptability of an emergency plan is a function both of the substantive content of its provisions and of the process through which those provisions are discussed, formulated, argued about, and, ultimately, agreed to.
We would like to distinguish between two culturally available ways of understanding the content and the process of emergency preparedness. We call these the civic perspective and the consumerist perspective. We believe that emergency preparedness is best understood from a civic perspective, and it is this perspective that will inform our discussion of the ethics of emergency preparedness in this chapter. But it is important to grasp the difference between these two ways of understanding emergency preparedness, especially since the consumerist perspective is so often implicitly embraced when emergency preparedness is discussed and promoted, even within the public health field. Also, the consumerist perspective fits well with the background individualism and market orientation of American society today.
From a civic perspective, emergency preparedness planning and response are forms of activity that ordinary citizens ought to engage in out of a sense of membership and solidarity. Membership perceives that everyone is a part of a community of common interest and common vulnerability. Solidarity perceives that we have a responsibility for others and for the health of our shared community as a whole. From a consumerist perspective, emergency planning is fundamentally a specialized service that fearful and vulnerable individuals ought to purchase [as taxpayers] for their own protection. From a civic perspective, citizens engage in emergency planning and cooperate with its implementation. According to a consumerist perspective, individuals submit to plans devised and implemented by experts.
When viewed through the lens of the consumerist model, emergency planning is rather like medical or financial planning. Providers with specialized knowledge are preparing a product for clients who are consuming [using] that product to promote their own interests as consumers. When seen as a civic practice, on the other hand, emergency preparedness is not a commodity to be exchanged between a consumer with an interest and a provider with the expertise to fulfill that interest. It is part of the public function of protecting and promoting the security, life, liberty, and well-being of the people as a whole [Benjamin, 2006; Schafer, Carroll, Haynes, & Abrams, 2008]. An emergency plan is not the property of those who create it; it is not simply “used” by the people who benefit from it. It is an expression of the entire community about the value of the lives and health of its members. It is less like a contract between seller and buyer [provider and client] and more like a covenant, an agreement to be entered into by all and that establishes commitments of responsibility for each [Vawter et al., 2010a; Vawter, Garrett, Gervais, Prehn, & DeBruin, 2010b].
If emergency planning is viewed as a civic practice, then citizens are parties to the plan, not consumers of it. Hence, from the civic point of view, it is entirely appropriate to emphasize broad, inclusive participation and community engagement in the planning process. Emergency preparedness is one important aspect of the life of strong democratic communities [Garrett, Vawter, Prehn, DeBruin, & Gervais, 2009; Garret et al., 2011].
Some caveats are in order at this point. In stressing civic considerations in this conception of emergency preparedness, we do not mean to suggest that emergency planning should wait until preexisting barriers to full inclusion, participation, and community involvement are overcome, or until the conditions of social justice and equality that make civic participation fully meaningful are achieved, or until broader social problems, like racism and poverty, are solved. Planning must cope with society as it is, not as it could or should be. And we do not mean to suggest that emergency preparedness will be the sole—or even the principal—instrument of social reform. Many other activities must converge on the problem of civic renewal and resilience. Nonetheless, we do believe that emergency planning can reinforce our civic life and our liberal democratic values [Childress & Bernheim, 2003; Jennings, 2007a, 2007b; Zack, 2009]. To do so, it needs to be structured and carried out in a participatory fashion and not merely in the service of narrow health and safety goals, which the consumerist model highlights.
Civic renewal is a practical task, and people will not become involved in their community unless they find the activities and issues meaningful in their own lives and believe that their involvement will actually make a difference. Still, danger focuses attention, and public health matters—from bioterrorism to pandemic influenza to E. coli contamination—are coming to the forefront of public awareness. Because we are going to engage in massive and expensive efforts to develop emergency response plans in communities throughout the country, plans that will merge with climate change adaptation, why not get as much civic benefit out of the activity as possible?
Emergency preparedness is not only about protecting a community; it is also ultimately about embodying both the remembered traditions and values of a community and a forward-looking vision of how the community can be made a better environment for all its members in the future. At its best, emergency preparedness preserves the past, protects the present, and promotes a more secure, resilient future. Successful emergency planning must tap a preexisting fund of civic responsibility, a sense of justice, and concern for others in need. But emergency planning does not simply presuppose these virtues, it can—and should—be an occasion to foster them, as well. Fear and self-interest will no doubt be strongly in evidence during any public health emergency. But public health leadership can move communities beyond these motivations to a sense of common purpose and solidarity.2
Compass Points for Emergency Preparedness as Civic Practice
Emergency preparedness in each of its phases—the pre-event planning phase, the response phase, and the recovery phase—is a complex ethical undertaking, just as it is a complex managerial and scientific one. Ethical analysis cannot reduce that ethical complexity, and it does not pretend to offer a decision-making or policy-making algorithm. However, it does provide conceptual tools for discussion and clarification leading to agreement and common resolve. In that sense, ethical analysis may serve to enhance our capacity to prepare for and respond to emergencies in just, responsible, and effective ways.
The seven ethical goals discussed in this section are based on the notion that the emergency preparedness process ought to be guided by explicit ethical values that are commonly accessible and reasonable, albeit subject to ongoing interpretation, clarification, and discussion. As previously mentioned, these goals are not intended as rules or principles that must be followed in order to arrive at ethically correct decisions. That is not their purpose. But these goals do provide an orientation to guide emergency preparedness policies and activities. They are the compass points, so to speak, of a general orientation and mode of thinking designed to increase the likelihood that public health emergency preparedness will be both effective and trustworthy. This orientation is a civic one, and, when informed by that orientation, public health emergency preparedness can aim both to achieve ethically appropriate ends and to do so using ethically appropriate means.
The ethical goals of emergency preparedness are multiple, difficult to prioritize, and may give rise to practical ethical dilemmas when they conflict. [The same is true of ethics in virtually any area of practice.] They must be clearly articulated and understood for several reasons. These goals are intrinsically important, they express the values of the profession of public health professional service and traditions, and they represent the nature of a community’s moral ideals. The clarification of these ethical goals is also important because widespread public recognition of them reinforces public trust and the legitimacy of emergency preparedness:
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Harm reduction and benefit promotion. Emergency preparedness activities should protect public safety, health, and well-being. They should minimize the extent of death, injury, disease, disability, and suffering during and after an emergency.
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Equal liberty and human rights. Emergency preparedness activities should be designed so as to respect the equal liberty, autonomy, and dignity of all persons.
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Distributive justice. Emergency preparedness activities should be conducted so as to ensure that the benefits and burdens imposed on the population by the emergency, and by the need to cope with its effects, are shared equitably and fairly.
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Public transparency and inclusiveness. Emergency preparedness activities should be based on and incorporate decision-making processes that are inclusive, transparent, and accountable so as to sustain public trust.
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Community resilience and empowerment. Emergency preparedness should develop resilient as well as safe communities. Emergency preparedness activities should strive toward the long-term goal of developing community resources that will make them more hazard-resistant and allow them to recover appropriately and effectively after emergencies.3
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Public health professionalism. Emergency preparedness activities should recognize the special obligations of certain public health professionals and promote the competency of these professionals and coordination among them.
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Responsible citizenship and civic commitment. Emergency preparedness activities should promote a sense of personal responsibility and citizenship.
Saving Lives and Preventing Harm: A Broad Mandate
Emergency preparedness activities should protect public safety, health, and well-being. They should minimize the extent of death, injury, disease, and suffering during and after an emergency. It is important to notice the difference between the public health perspective on this objective and the perspective traditionally adopted by clinical medicine. What has been termed the “rule of rescue” is very powerful in social and medical morality. Saving lives has a very high—sometimes the highest—priority. “Above all, do no harm” [primum non nocere] is also an enduring tenet of medical ethics. However, the public health ethical objective of emergency preparedness does not focus solely on efforts to minimize the morbidity and mortality of isolated individuals; it must also protect the health of the larger population and community and promote the common good of all. Accordingly, the objective of minimizing mortality may sometimes have to be subordinated to other objectives. Faced with a pandemic, infection control may take precedence over the treatment of those already ill and at high risk of death [Battin et al., 2009]. This will have a direct bearing on how vaccines and life-sustaining treatment [ventilators, or intensive care units] are used [Altevogt, Stroud, Nadig, & Hougan, 2010; DeBruin et al., 2010; New York State Workgroup on Ventilator Allocation in an Influenza Pandemic, 2007; Vawter et al., 2007, 2010a; Vawter, Garrett, Gervais, Prehn, & DeBruin, 2011].
Minimizing psychological harm and trauma is equally important. In addition, public health emergency planning must be concerned with minimizing economic loss, destruction of property, and the disruption of basic social services. Emergency preparedness should be conceived and practiced in such a way that it casts a very broad net. The importance of this has been demonstrated repeatedly [Jensen, 1997; United Nations, 2004].
Moreover, the scope of emergency planning does not stop there. It includes environmental damage, loss of biodiversity, and ecosystemic degradation. Such matters have both short- and long-term effects on public health [Center for Health and Global Environment, 2005; Frickel, 2006; Frumkin & McMichael, 2008; Sze, 2006]. Consider some examples. As devastating as the injury and loss of life were on that day, they were not the only public health disaster on September 11, 2001. The other, ongoing disaster was environmental: the effects of the collapse of the massive twin towers and the subsequent human exposure to toxic materials during the event and for months thereafter [Langewiesche, 2002; World Trade Center Health Panel, 2007]. Similarly, it was not so much Hurricane Katrina itself as it was the collapse of the levies and the resulting flooding that brought New Orleans into a public health crisis. And even that was exacerbated by underlying social, economic, and cultural conditions [Daniels, Kettl, & Kunreuther, 2006; Gilman, 2006; Graham, 2006; Hartman & Squires, 2006; Molotch, 2006; Strolovich, Warren, & Frymer, 2006; Tracy, 2007].
Thus, emergency preparedness must include not only planning for a catastrophic event per se, but it also must include upstream assessment and preventive measures and downstream recovery and mitigation. Building codes and their enforcement, as well as the proper maintenance of the aging infrastructure of US cities, are also components of emergency preparedness for they, too, protect lives and defend health. The connection between these upstream environmental and infrastructure issues and public health should be explicitly recognized and acknowledged because their importance is often forgotten, and other factors like cost savings and political expediency often overshadow them [Frumkin, Frank & Jackson, 2004].
Finally, the goal of harm reduction must be broad enough to encompass the social and cultural dimensions of catastrophic events and how they are planned for and responded to in both the immediate event and in the long term [Hoffman & Oliver-Smith, 2002]. Emergency preparedness should strive to minimize long-term loss of social capital, cultural disintegration, and social suffering. Both the bio-psychosocial model of health that is widely accepted within the public health field and a growing body of epidemiologic research indicate that the destruction of webs of supporting relationships and of civic institutions can have significant effects on population health and well-being. All-hazard emergency planning and response must protect not only the whole person [i.e., both body and mind], but also organizations, systems of social functioning, and culturally meaningful ways of life.
An emergency plan is not simply a document: it is a process and activity itself, stretching over several years and revisited periodically. Plans should not only be reviewed at regular intervals for currency, but they should also be evaluated using exercises or drills. Emergency planning sets in motion a whole social complex—discussions, large meetings, small meetings, networks among officials and professionals, local organizing and educational activity, creation of new communication channels, and recruitment of specialized personnel or retraining of existing personnel.
The paradigm of emergency preparedness that provides the most latitude for achieving high ethical standards and ideals is a broad social model of emergency planning. It brings public health into contact with similarly oriented perspectives and movements in cognate fields. It draws orientation from social epidemiology and “place-based” [ecosystem landscape and built environment] public health, community-based participatory research, deliberative planning, and the building of learning communities and learning organizations in management and leadership science [Berkman & Kawachi, 2000; Forester, 1999; Schön & Rein, 1997]. It may even have an analog in law enforcement and criminal justice theories of community policing [Friedmann & Cannon, 2007].
This is a broad mandate and a daunting task for emergency preparedness. Nonetheless, from an ethical as well as from a public health point of view, nothing less than this broad mandate and mission for planners will be truly adequate.
Respecting Individual Liberty: The Challenge for Emergency Preparedness
The noted political philosopher Sir Isaiah Berlin captured the core of the modern understanding of liberty as personal autonomy and self-determination when he wrote: “The defense of liberty consists in the ‘negative’ goal of warding off interference” [Berlin, 1969, p. 127].4 In an emergency, it becomes difficult for an individual to be at liberty in this sense because being interfered with by someone or something is virtually unavoidable. It becomes difficult for each individual to respect the similar liberty of others, to leave them alone, or to stay out of their way. In an infectious disease emergency, each person becomes a potential or actual “vector” of disease transmission [Battin et al., 2009]. In a mass casualty event, each person in need of medical treatment becomes an interfering or competing presence from the point of view of others who are injured and in need of special attention also. In an evacuation event, each car on the highway becomes an obstacle to the safe escape of others.
There is a long tradition of civil liberties in the United States and in many other countries, but ethics and the law have always recognized that rights and liberties can be temporarily overridden during an emergency situation when substantial harm to others is impending. Such temporary power has the potential for being extended in unjust ways and abused. A sensitivity to past abuses within public health itself has grown, and public health planners are—or should be—acutely aware of past restrictive measures that were justified on grounds of public health necessity but were later revealed to be instances of outright racism, social animosity, and invidious discrimination [Bayer & Fairchild, 2004]. “Necessity” can be a value-judgment rather than an objective fact. Moreover, authoritative claims about necessity, especially in a crisis situation, can be used to shut down deliberation and lead to premature closure in considering policy options. It is an ethical mistake to be underinclusive in imposing restrictive measures because excess harm may result, but it is also ethically wrong to be overinclusive, for then the important values of liberty and rights have been sacrificed to no purpose of corresponding moral weight.
In 2001–02, these difficult issues were brought out in the open and made the subject of a wide-ranging debate by a joint project between the Centers for Disease Control and Prevention [CDC] and a team of legal scholars from Johns Hopkins University. This project produced the Model State Emergency Health Powers Act [Center for Law and Public’s Health, 2001]. A review of existing state laws found much inconsistency and many instances in which state authorities might not have a legal basis for taking the steps required in a public health emergency. The Model Act identified a wide range of powers to be granted to state governors, for a limited time, in the event of a properly declared emergency. Involuntary quarantine, invasive medical treatment without patient consent, the commandeering and destruction of private property by the state—all of these legally extraordinary practices and more were proposed for debate.
One of the principal authors of the Model Act argued that its measures are in keeping with a long-standing legal and ethical framework in the liberal democratic tradition in which personal liberty is balanced against preventing harm to others, and the interests of particular individuals are balanced against the public interest [Gostin, 2003; Gostin et al., 2002]. Central to this analysis is the notion of a threshold restriction on individual liberty. Policy and public health authority should calibrate the lowest threshold of restriction that is compatible with meeting the public health and safety objective in question.
Similar notions are in fact widespread in public health ethics and in ethics generally. The maxim of utilizing the “least restrictive alternative” or the “ladder of intervention” is a way of simultaneously minimizing harm and respecting freedom in an emergency [Holland, 2007; Nuffield Council on Bioethics, 2007; Upshur, 2002]. However, this idea is limited by the fact that it seems to presuppose that it is known where the objective threshold of liberty restriction lies—for instance, what subset of persons to quarantine because they pose the true risk of spreading disease when it is not necessary to quarantine the entire group [Campion, 1999; Parmet, 2007].
Overinclusive restriction of liberty is problematic, of course, because it has untoward side effects [Annas, 2002; Fairchild, Colgrove, & Jones, 2006]. It wastes scarce resources to maintain a large restricted population and to ensure compliance. It takes persons who have been unnecessarily restricted away from more productive activities. The core of the problem raised by the use of liberty-limiting emergency interventions, however, is that they override something that arguably is of intrinsic value and something that we all have a duty to respect: the value of individual liberty and the right of adults to make judgments for themselves concerning precautions, prudence, and balancing safety and risk reduction against other personal values and priorities [Annas et al., 2008].
It is tempting to say that when protecting life and respecting liberty conflict, one must err on the side of life. Public health professionals may feel that the protection of health justifies the restriction of liberty as well. Restrictions of liberty are most readily justified when the restrictions last only a short time, and the damage done to the person thereby is reparable or compensable. Material interests, such as confiscated or destroyed property or lost wages due to mandatory social distancing measures, are compensable; loss of dignity, failure to be treated as an equal and with respect, or suffering stigmatization and loss of privacy might not be. It is always important for those in authority—and this applies as well to those with benevolent motives—to recognize the fallibility of their judgment and the limitations of their ability to foresee all the consequences of public health policies that restrict individual self-direction and freedom of choice. The balance between preventing harm and respecting liberty is not as easily struck as it may first appear, particularly in the planning phase of emergency preparedness.
In addition to the idea of using the least restrictive alternative as a means to achieve a public health objective, borrowing the judicial notion of due process can be a guide for striking the right ethical balance under conditions of uncertainty. Emergency preparedness should respect the right of persons not to be denied liberty or property in an arbitrary, discriminatory, or unnecessarily restrictive way. The reasons for the restriction of liberty matter ethically. The infringement on liberty will not be as severe if the person being restricted perceives that the restriction has been determined in a fair and reasonable way. Many times, it is not the restriction of freedom of movement or freedom of choice per se that is offensive, but the suspicion that it represents a discounting of the worth of the person being restricted.
Similarly, not only the reasons why liberty is being limited, but the manner or way in which it is limited matters. Emergency plans and procedures should respect the privacy and confidentiality of individuals who have to be restricted and should protect them from undue social stigma and humiliation. Also, the balancing of liberty against other values so that respect for persons is not undermined can be achieved when plans make special accommodation and provision for those with special needs or impairments. Those persons will suffer disproportionate burdens or be denied rightful benefits if their impairments are not compensated for by environmental mitigations, special equipment, resources, or services.
Voluntary Versus Mandatory Compliance Policies
The issue of voluntary versus mandatory compliance policies has a specific bearing on the problem of ethically justified limitations on liberty. Emergency plans are replete with features that essentially tell individuals what they are expected to do under specific circumstances. In emergency situations, the stakes are high, and noncompliance has serious and sometimes immediate consequences.
For the most part, a voluntary compliance approach is ethically superior to mandatory compliance, assuming that the necessary behaviors can be achieved. For instance, self-imposed quarantine in one’s home is ethically preferable to mandatory incarceration in a supervised facility. An approach that mitigates harm and risk can rechannel liberty without unduly restraining it. Social distancing orders without too much in the way of surveillance and enforcement is another example of an emergency procedure that treads lightly on personal liberty. Voluntary compliance has a strong role in public health emergencies because people are fearful for their own lives and health and see that the restrictions are beneficial; people also feel conscientiously the importance of not putting others at risk by failure to comply with the emergency plans requirements.
Nonetheless, when it is clear that individuals pose a serious risk to others by their unwillingness to comply with behavioral restrictions, there is clear ethical justification for compelling them to do so. Similarly, when there is reason to believe, on the basis of sound evidence, that large numbers of people in the population are unlikely to comply with various restrictions voluntarily [a curfew or home quarantine, for example], mandatory policies backed up by law enforcement are justified, although they should be used with the utmost restraint and judiciousness. Mechanisms for timely individual hardship appeals should be readily available.
Situations of justifiable coercion exist, but they should be arrived at gradually. Attempts at correcting misinformation and at rational persuasion should be made before more punitive or physical measures are used. This standard applies both in cases of harm to others, where ethical justification is relatively straightforward, and in the more difficult cases of noncompliance involving only harm to self [Conly, 2013; Gaylin & Jennings, 2003; Trotter, 2007].
In the emergency preparedness context, it is unlikely that too much time or energy will be expended on those whose behavioral limitations [or noncompliant behavior] pose only a risk to themselves. Rescue workers during a flood will not linger too long to persuade a person to leave his or her home when there are still many other people up the street awaiting rescue. Also, the scarcity of time and human resources raises the question of whether it is fair to others to take the additional time necessary to gradually work through the steps along the spectrum from persuasion to coercion. Moreover, attempts to use physical coercion by those not properly trained in such techniques will put both themselves and the noncompliant individual at risk.
If mandatory restrictions on liberty are ever chosen by emergency planners and policy-makers, they have a responsibility to ensure that adequate resources are available to enforce those requirements fairly and humanely. This is but one example of the general proposition that a part of ethically responsible emergency preparedness is to provide adequate training and materials to public health workers and other public safety officials and first-responders so that they can do their jobs effectively and safely. Risk inherent in the situation does have to be accepted by those who volunteer to serve, but risks that are artifacts of poor planning and policy are unjust and should not be imposed on anyone. One can easily realize how much emergency preparedness involves matters of ethics by remembering the consequences of not doing it well [Bytheway, 2006; Fussell, 2006; Oliver-Smith, 2006; Scanlon, 2006].
Justice and the Allocation of Resources
Perhaps the most pressing, difficult, and anxiety-provoking ethical issues prompted by emergency preparedness concern the problem of distributive justice. If a pandemic of avian influenza were to strike the United States, who should be given priority in the distribution of scarce vaccines, antiviral medications, and ventilators? When the next devastating hurricane overwhelms coastal communities, which affected neighborhoods or population groups should be evacuated first? Should society invest significant resources to try to rescue those who have chosen to remain in place? If the United States experiences another anthrax attack, should antibiotics first be given to politicians or postal workers? In the face of death and scarcity of resources, the old questions remain as relevant and disturbing as ever: Who shall live when not all can live? How shall we choose who lives and who dies?
In addition to these urgent questions posed at the point of distribution in the trenches, society faces equally difficult policy choices concerning how much to spend on the production and stockpiling of medicines and materials in anticipation of a crisis, particularly when those resources will go to waste if a crisis does not occur as feared. Suppose policy-makers take the seemingly prudent course and decide to stockpile vaccines, antiviral drugs, antibiotics, ventilators, hospital beds, and other life-sustaining resources. How large a stockpile should they create, and at what cost? As the richest nation on earth, perhaps we should attempt to create a cache of goods so massive that it might preclude the necessity of rationing should disaster strike [Institute of Medicine, 2008].
However, given the equally massive opportunity costs involved in such an undertaking, the low likelihood of emergencies actually striking at any particular place and time, and the need to constantly replenish aging stockpiles of dated drugs, perhaps it would be better to de-emphasize the importance of stockpiling in favor of building up a basic public health infrastructure and hospital overflow capacity.5 If it is decided to stockpile, how much of current public health and national budgets should be devoted to this enterprise, and what sorts of items constitute the best candidates for this purpose?6
Questions of justice often achieve special saliency in the course of emergencies because emergencies often feed upon and exacerbate deep-seated, chronic, and pervasive patterns of social injustice that precede them. Hurricane Katrina provided one of the most graphic illustrations of this phenomenon. Although that natural disaster wreaked havoc upon rich and poor alike, the poor and marginalized, neglected for so long, bore the brunt of the catastrophe [Cooper & Block, 2006]. The faces of the displaced and desperate survivors in the New Orleans Superdome were by and large the faces of poor and middle-class African Americans who lacked the money or the means to escape from the rising waters. Many of the medically and socially worst-off citizens of that city, those with physical and mental disabilities and their families, never even made it to the Superdome, victims of drowning in their own homes or on the lower floors of abandoned facilities. Emergencies thus tend to highlight and exacerbate the deep social fissures and chronic social injustices that haunt our society.
Why Deliberating About Justice During Emergencies Is So Difficult
Even under the best of conditions, thinking about the nature and demands of justice is difficult and contentious. As with the value of liberty, fundamental questions of justice generate conflicting answers and rival “-isms”—for example, utilitarianism, egalitarianism, libertarianism, and communitarianism. Even beyond the usual problems posed by the essentially contested nature of ethical argument, there is ample reason to worry that thinking about justice in the context of emergency preparedness will face particularly vexing obstacles.
First, some might argue that thinking about just responses to emergencies is pointless precisely because emergencies, by their very nature, tend to overwhelm a society’s capacity for rational thought and planning. Large-scale emergencies engender large-scale social chaos. Reliable information is scarce, resources are quickly tapped out, front-line responders are stretched to the breaking point, and the desperately needy in ever greater numbers cry out in anguish for rescue. In the fog of chaos, one might argue, thinking about justice is a distracting waste of time; the best we can do is rely on ad hoc, seat-of-the-pants judgments and muddle through as best we can.
Although the chaotic aftermath of any given disaster is a context particularly ill-suited to measured deliberations bearing on distributive and procedural justice, this does not warrant emergency interventions guided exclusively by considerations of efficiency, the greatest good of the greatest number, or a kind of amoral realism in which might makes right. On the contrary, the ability to predict in advance the fog of chaos makes it all the more imperative to engage in deliberation—“thinking in an emergency,” as one scholar put it—about just responses to emergencies well before they occur [Scarry, 2011].
A second, more significant difficulty is posed by a question at the very heart of disaster planning: What share of the health-related budget should be directed at future planning specifically for various kinds of emergencies, and what share should be devoted instead to the establishment and maintenance of a robust public health infrastructure capable of providing sturdy all-purpose defenses against a wide variety of both current and future threats [Rosner & Markovitz, 2006]? Should government spend the greater part of its preparedness budget on shoring up the capacity of biological and chemical laboratories, which are used every day, or should it also invest heavily in building laboratory capacity against future radiologic attacks that might never take place? The danger here is that planners might be seduced into irrational thinking by the prospect of a threat that poses potentially catastrophic losses but whose probability of occurring is actually quite low.7 Obviously, this way of approaching problems by focusing narrowly on the worst possible scenario can often lead to counterproductive results.
Unfortunately, there is no clear-cut ethical solution to this problem. Rational prudence would dictate some form of social insurance against the prospect of catastrophic disasters, especially for a rich country like the United States. Once disaster strikes, the public will want to know whether its worst effects could have been foreseen, and, if they could have been foreseen, why they were not prevented. In retrospect, spending additional millions of dollars in 2000 on shoring up the levees protecting New Orleans would have been the obviously prudent choice. On the other hand, spending millions or billions annually to prevent potentially catastrophic events with an extremely low probability of occurring might turn out to be the public health equivalent of the Maginot Line.8
A third problem underscores the more general issue of uncertainty in disaster planning. The inability to make accurate predictions extends not simply to whether or not a particular sort of disaster is going to occur, but also to the magnitude of all impending threats and to the particular populations or age cohorts that might be most threatened by them. Planning for a pandemic of influenza implicates many such uncertainties. Before a pandemic emerges from its incubator, health officials will not know what specific virus to target with a specially crafted vaccine, what range of effects antiviral drugs will have against it, and which age or population groups will be most severely affected [Arras, 2006]. The lesson to be drawn from the existence of such pervasive uncertainty is that whatever conclusions we reach about the justice of any proposed mitigation activities must be considered provisional and subject to revision over time as the disaster unfolds. Flexibility in response to changing conditions and evolving knowledge will be crucial to successful emergency planning and emergency response.
A fourth difficulty for thinking about the justice of disaster responses stems from the existence of conflicting values at stake in such situations. The task would be considerably easier if emergency response implicated only a single overarching value, such as saving as many lives as possible. In such a case, planners would simply have to identify the dominant value and then array resources so as to afford it maximal protection. But, as we noted earlier in the section on saving lives and preventing harm, there are numerous countervailing considerations that make a simple rule of rescue or a maximization of any one value—even lives saved—problematic. One of those considerations is the fact of scarcity that throws into stark relief several conflicting values that vie for our attention and resources, both in normal everyday life and especially during emergencies.
In the example of pandemic influenza, priority setting with regard to the deployment of scarce vaccines or antiviral drugs might well be directed at saving the most lives, but priority might also reasonably be given to preserving vital social and economic services and infrastructures, to safeguarding the young rather than the elderly, or the disabled rather than the able-bodied. Here, too, there is no reliable societal consensus regarding the proper weight that should be attributed to some conflicting values, and this will make it difficult, if not impossible, to resolve rationally many disagreements over the justice of emergency mitigation activities. Many such conflicts involve tradeoffs between the maximization of certain values [e.g., lives saved or quality-adjusted life years [QALYs] secured] and the equitable distribution of resources. That is, in many cases, securing the “best possible” results, however defined, might conflict with exhibiting the sort of concern demanded by justice for every group potentially affected by these decisions. Such conflicts between achieving maximal efficiency and the equitable treatment of all concerned go right to the heart of just emergency planning and emergency response.
Conceiving Justice as Efficiency and Equity
For most of its long history, the field of public health has defined itself and its guiding orientation in terms of a population perspective. Whereas the focus of clinical medicine tends to be the individual patient, public health has focused on the health of entire populations, and whereas medical ethics has in large measure been guided by individualistic and deontological [duty-based and rights-based] norms of fidelity to the interests of individual patients, public health has gravitated toward a largely consequentialist and social welfare-oriented or utilitarian ethic focusing on maximizing population health. Traditionally, the norms animating the enterprise of public health have tended to place the safeguarding of public health and safety above the concerns of individuals whose condition or behavior might threaten society’s well-being. In many ways, this focus on the maximization of good consequences comes naturally to public health, as does a utilitarian conception of justice that holds that a pattern of distribution of benefits and burdens across a population is just [or ethically justified on grounds of justice] when that pattern maximizes aggregate net benefit or provides a greater aggregate net benefit than any other practical alternative. For utilitarians, the maximization of welfare is the very definition of justice [Goodin, 1995].
However, the traditional ethical orientation of the field of public health has not defined justice only in terms of maximizing aggregate net benefit; public health is also deeply committed to a view of justice that is concerned with the fairness and the impact on individuals of the way benefits and burdens are distributed in society, as well as the aggregate results of that distribution. This equity or fairness emphasis on the protection of basic needs and rights of all individuals and groups has no doubt accounted in large measure for public health’s traditional focus on the poor and dispossessed within society.
It is certainly possible to achieve both equity and efficiency under certain circumstances. Given the historical and epidemiologic correlation between poverty and disease, it should not be surprising that public health has adopted a special concern for the health needs of the poor and marginalized sectors of society. Whether one is attempting to combat the HIV epidemic, drug-resistant tuberculosis, or the after-effects of a devastating hurricane, the surest route to achieving maximal health returns is to focus attention on the plight of the poor, whose living conditions create efficient transmission of infectious diseases and increase vulnerability to natural disaster. Efficiency and health maximization are not the only reasons for a special focus on the poor and socially vulnerable, but they are powerful reasons nonetheless.
Justice as Efficiency: What Is To Be Maximized?
Conceiving of justice as efficiency or the maximization of results prompts the question: Maximization of what? Different answers to this question will yield different policy recommendations, both in public health and in emergency planning. First, one might view utility or general welfare as the maximand, which would lead to adopting a straightforwardly utilitarian theory of public health justice. In this view, actions and policies should be governed by social value criteria that include but transcend a concern for health outcomes. In the context of emergency intervention, such a theory of justice would give priority not only to front-line public health workers but also to key political decision-makers and to workers in industries critical to economic welfare. Pushed to a logical extreme, such a theory could countenance prioritizing young healthy workers for pandemic influenza vaccine on the grounds that the greatest economic cost exacted by an influenza pandemic would be attributable to massive loss of life in the healthy working population.
In general, utilitarian theories of such broad scope are not appropriate for decision-making, either within health policy or public health, where the target of justice should remain focused on health outcomes. This would still permit planners to prioritize front-line public health workers, vaccine manufacturers and transporters, and other personnel indispensable for maintaining vital infrastructures both in health care and public health. Still, focusing exclusively or primarily on health outcomes creates the task of determining which health outcomes are the most appropriate target for public health mitigation activities in time of crisis. Should the maximand be some sort of quantitative measure, such as quality-adjusted life years [QALYs] or disability-adjusted life years [DALYs]? According to these methodologies, people rate various states of health and well-being ranging from 0 [death] to 1 [perfect health]. Then, an emergency response’s likely effect on quality of life [e.g., moving a patient from 0.7 to 0.9] is multiplied by the effect’s duration and, finally, by the number of people thus affected. The cost per QALY can then be computed by dividing the estimated total bill by the number of QALYs promised by a particular emergency response. Formulas like this are intended to focus spending on those procedures that promise the most health-related bang for the buck.
Although methods of this sort have proved useful in setting priorities in health policy and public health, they remain highly controversial, primarily because of their tendency to obscure or preclude tradeoffs between the maximization of health and other important values. Critics charge, for example, that QALY/DALY approaches tend to give short shrift to the elderly and the disabled on the grounds that money spent on them will not generate as many QALYs as care given to younger people or to those who can be returned quickly to normalcy. The worry, then, is that such approaches are inherently discriminatory toward those who are often regarded as the most vulnerable or needy [Saunders & Monet, 2007; Vawter et al., 2007, 2010b, 2011].
A third interpretation of the object to be maximized would simply target the number of lives saved with available resources, regardless of the number of QALYs those lives have to offer. This simple and clearly stated objective has intuitive appeal. It would give priority to those who are most at risk for death or serious morbidity and to whose cure or rescue has the highest chance of success. Those whose rescue or cure would require extraordinary expense or who most likely would not respond to treatment [e.g., elderly, immunocompromised nursing home residents] would not be favored. A distributive principle framed in terms of saving the most lives would also avoid some of the problems inherent in more utilitarian views. For example, unlike some applications of utilitarianism that strive for maximal economic or social benefit, it would not give priority to politically and economically favored sectors of the society and would thus be less likely to erode social trust among the population at large.
Although the “most lives saved” metric meshes nicely with the population-based approach of public health, and although it might provide reliable guidance in many contexts, it, too, is vulnerable to the criticism that it ignores or precludes other important values. Like the QALY method and all conceptions of justice as the maximization of some value or other, this approach can be faulted in some contexts for ignoring the fairness of its favored distributions [Brock, 2004]. In addition to producing the greatest amount of overall welfare, the most QALYs per dollar, or the most lives saved, a theory of justice is also expected to “give everyone their due.” For some alternative approaches to justice, this will mean giving priority to the worst off or the most vulnerable, or ensuring that everyone has a fair chance at benefiting from a given distribution, or that everyone’s basic, human needs are satisfied—regardless of the impact of such prioritization on our ability to maximize anything. Such alternative approaches are referred to as “duty-based “ or “non-consequentialist” theories of justice that focus on the rule of equity or fairness.
Justice as Equity: Fairness for All
According to the equity conception of justice, these equity concerns can function either as external checks and balances imposed on the field of public health conceived as a health maximizing enterprise, or they can be embraced within an alternative, more capacious conception of public health as an enterprise at the service of social justice. With either interpretation, the traditional public health focus on the poor and marginalized can best be explained not simply as part of a health maximizing strategy, although it is surely at least that, but rather by viewing priority for the poor and marginalized as a demand of social justice [Powers & Faden, 2006]. In this view, those whose basic needs have not been met by society, those whose fundamental human capacities have been systematically stunted by unjust social institutions have the greatest claim on resources at the disposal of public health.
At the very least, justice as equity would mandate various checks on the achievement of greater population health at the expense of individual rights; for example, through the precipitous isolation of infectious but compliant individuals. At most, it would claim that a concern for human rights is an integral aspect of the mission of public health. In the context of emergency response, justice as equity might mandate priority for the poor, people living with disabilities, and the socially isolated. Moreover, a more controversial equity-based view might give priority to saving the young [e.g., in a context of pandemic influenza] before the elderly, not on the convenient ground of social utility, but rather because justice demands it. In this view, the elderly have already lived [most of] their lives; they have already played out their “fair innings” [Williams, 1997]. Children and young adults, on the other hand, have yet to live out their allotted span of innings and thus have a greater claim to public health resources.
The equity perspective thus complicates the task of doing justice in the context of public health emergencies. Whether equity concerns are viewed as externally imposed checks on the achievement of public health goals, as the traditional view would have it, or as internally articulated priorities of public health, the maximization of good consequences will have to be weighed and balanced against countervailing values. This tension poses a fundamental problem for a theory of public health justice because there is no consensus, either within society at large or within the ranks of philosophers, on exactly how such conflicts of value should be resolved. Most of us believe that equity concerns should temper the achievement of maximal health-related results, at least to some extent, but there is reasonable disagreement in many cases on how far the scales should tip in the direction of priority for the poor, the disabled, the vulnerable, or the young. What costs in terms of overall population health outcomes is a society willing to pay to safeguard the basic interests of various vulnerable groups? Even if we could all agree that those who are worst off deserve some degree of priority, concentrating resources on the desperately sick might in some circumstances be terribly inefficient at saving the most lives [Daniels & Sabin, 2002].
Suppose, for the sake of argument, that vastly more people could be saved during an influenza pandemic by targeting vaccines at school-aged children who quite efficiently transmit infectious diseases to their families and, in turn, to the society at large. Would justice demand that priority be given instead to debilitated, immune-system–depleted, elderly nursing home patients who might plausibly be defined as the most vulnerable group? It is not at all clear that justice would demand such a dramatic tradeoff with efficiency, defined as the ability to save the most lives. At this point, theories of justice appear unable to resolve such reasonable disagreements. Certain ethical principles might be clearly wrong [e.g., “Let the free market decide who shall live”] or unfair in application [e.g., a lottery], but many proposed tradeoffs between the maximization of health and conflicting equity concerns appear to fall within a range of ethical acceptability, even if none may strike us as uniquely just or ethically correct.
From Substance to Process
Because theories of justice do not yield univocal solutions to such balancing problems, political philosophers are increasingly recommending processes of democratic deliberation as a crucial supplement to substantive theory [Daniels & Sabin, 2002; Fleck, 2009; Gould, Biddle, Klipp, Hall, & Danis, 2005; Gutmann & Thompson, 1996]. In this view, a number of possible tradeoffs might be plausibly justified by conflicting sets of values, so the task is to formulate fair rules for a process that will serve to legitimate a particular social choice. The focus here is not on theoretical correctness, although it is often assumed that all the live policy options on the table will be “just enough” or not demonstrably unjust; rather, the focus is on legitimacy, or the question of why free and equal citizens should accept any given political decision, especially those bearing on tragic choices of life against life. All persons believe that their life is of equal value to the lives of others, so if any particular tragic choice favors others over us or our loved ones—if a decision has been made to give a ventilator or vaccine to someone else and if we are likely to die or suffer greatly because of that choice—we will certainly insist on knowing who made the decision and what reasons have been given to justify it. Above all, we will seek reassurance that the decision was fair and that it was reached by a fair process.
Typical requirements for fair process include:
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Publicity or transparency in decision-making. Contrary to those who believe that such tragic choices will prove socially toxic to a public unwilling or unable to contemplate them [Calabresi & Bobbitt, 1978], the partisans of deliberative democracy hold that when it comes to matters of social justice, and especially to matters affecting who shall live and who shall die, publicity and transparency about the grounds for decisions is a prerequisite of their legitimacy. Those who might have to pay the ultimate price of rationing decisions have every right to know how those decisions were reached and on what grounds. Secrecy or the rule of experts behind closed doors is by nature an unaccountable decision procedure that can obscure all manner of stupidity and injustice, including favoritism for one’s family or social group and discrimination against minorities or the socially marginalized. Thus, in addition to being a precondition of legitimacy, publicity can help guarantee that decisions will be as well-informed as possible and, hence, will tend to be more substantively correct or just over time than decisions reached in secret. As an example, an economic study has been unable to document a single instance of large-scale famine in open, democratic societies with a free press. By contrast, examples of famines or horribly managed natural disasters are depressingly easy to document among secretive military regimes [Sen, 1983].
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An appeals process. Those who disagree with a certain value ordering or who believe they or others have been unfairly disadvantaged by a social choice should be able to appeal the decision to responsible and responsive authorities. This will help ensure that principles are being fairly applied and that decision-makers remain open to the lessons of new experiences and arguments. The existence of an appeals process testifies to belief that all persons are equal in moral status and have a right to have their grievances aired and addressed. When conjoined to the publicity condition, the appeals requirement can provide society with a public record of criticisms bearing on allocation criteria and of official responses to them. [Obviously, an appeals process without a publicity condition would be useless because one would have no idea what exactly to protest.] This sort of record can function analogously to the body of appellate decisions in common law systems like that in the United States, where principles constantly undergo reinterpretation and specification in light of new fact patterns and fresh perspectives on value orderings. Public scrutiny of this public record of criticism and official response could help detect and rectify inconsistencies in past patterns of decision-making, and public officials would have to either abandon or defend such choices [e.g., on the grounds of differing circumstances]. Ideally, the result could be a growing body of increasingly sophisticated, morally justified, and politically legitimate case judgments that could inform future policy.
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The relevance condition. Some defenders of deliberative democratic procedures have proposed that limits be placed on the kinds of reasons that might legitimately be advanced in such public deliberations [Daniels & Sabin, 2002]. The only reasons that should count in public allocation decisions in health care or public health are those that could be accepted as relevant by fair-minded people who are disposed to find mutually justifiable terms of cooperation. Perhaps more sharply put, this means that appeals to reasons, evidence, or principles that could only be accepted by those already committed to some sectarian [i.e., religious] viewpoint will be ruled out of order.
This limitation on public deliberation is suggested for two reasons. First, coming to broadly acceptable social decisions on such morally and politically fraught issues is difficult enough without having to wade through fundamental and rationally irreconcilable religious commitments bearing on life, death, and our place in the universe. Second, the relevance condition is advanced in order to protect free and equal individuals from the imposition of public policies whose grounds [in sectarian religious doctrine] they could not freely accept. In the context of abortion and physician-assisted suicide, the imposition of sectarian religious beliefs upon the entire body politic has been said to amount to a kind of tyranny [Dworkin, 1993].
As opposed to the publicity and appeals conditions, this relevance condition is controversial and potentially problematic [Friedman, 2008]. Although designed to simplify public deliberation by bracketing highly contentious religious appeals, this condition leaves in place many equally contentious claims emanating from ethical or political theory on which many reasonable people can and do vehemently disagree. As a result, the process of deliberation is not likely to be substantially facilitated by automatically discounting certain beliefs or arguments because of their religious provenance. In addition, many if not most, persons’ approaches to questions of ethics and public policy are no doubt in large measure shaped by their own religious commitments. To officially rule out all such religious sources would thus have the effect of disenfranchising a large segment of the population from the deliberative process and would no doubt be interpreted by those excluded as a kind of demeaning marginalization. This problem could, however, be ameliorated somewhat by interpreting the relevance condition as excluding only those religious arguments that could not be given a secular translation. For example, religious arguments for racial integration and against legal segregation could be stated either in the language of the Hebrew prophets used by Martin Luther King or in the language of justice and equality. King’s biblically based preaching for social and legal equality would thus not run afoul of the relevance condition.
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Democratic participation and involvement of stakeholders. A major theme in much commentary on democratic deliberation is the need for greater citizen participation in public policy decision-making. For policies to achieve genuine legitimacy in the eyes of the public, more is needed than publicity and an appeals process. Notwithstanding their crucial importance, those two conditions cannot do much to allay the perception on the part of many that life-and-death policies in emergency preparedness are unjustly or arbitrarily imposed from on high by distant bureaucrats or experts.
The primary remedy for this perception is greater involvement of the public in emergency preparedness policy formation. The guiding idea is that those whose interests are affected by public health policies, and especially those who are negatively affected, will be more inclined to view such policies as legitimate and fair if they [or others like them] have had a voice in the development of such policies. So it behooves decision-makers in government and public health to strive for enhanced public participation, not only because such participation is an intrinsic democratic value, but also because it is the best way to secure crucially important collaboration between public health officials and the public in a common, communal effort to secure the public’s health in an emergency [see Chapter 4]. The nonemergency context of the Oregon Medicaid reforms of the 1990s provide a good illustration of this point. Despite many warnings that the public could never accept transparent discussions bearing on the rationing of health care, Oregon seems to have been largely successful in its effort to solicit public engagement and support for explicit health care rationing [Bodenheimer, 1997; Fleck, 2009].
Although there is widespread agreement on the desirability of enhanced public participation in the policy formation process, there is disagreement on the exact form that such participation should take, who should be asked to participate, what should be the ground rules for discussion, what information should be provided, and how to judge the results. Moreover, merely inviting various stakeholders or community representatives to take part does not ensure that the requirements of democratic representation have been met or that the outcomes of the process are just. Great care must be taken to secure broad representation of affected populations, especially among those who are the least well off, the most in need, and the most marginalized.
Although we are not in a position to specify the details of how civic participation should be arranged and conducted in emergency preparedness, we view this as a crucially important condition for the legitimacy and acceptability of public health decision-making bearing on the allocation of scarce resources. We encourage emergency preparedness professionals to search for best-practice examples from communities that have faced disaster situations for guidance.
Justice Issues in Phases of Emergency Preparedness
Several different sorts of justice/allocation issues might arise during the planning, response, and recovery phases of emergency preparedness, and these will be briefly discussed here.
The planning phase is a crucially important period for integrating justice-based concerns into emergency preparedness. Because planners will not be able to deliberate in a serious or sustained way about justice in the thick of a disaster, they should be asking ahead of time what sorts of responses are ideally [or at least adequately] just and which processes for decision-making are ideally or adequately fair and legitimate. This is the period during which crucial decisions will have to be made about what sorts of resources and how many of each should be stockpiled for eventual distribution in a public health emergency. It is also a time to deliberate about the proper criteria for allocating scarce resources, to enlist the public’s participation in this process, and to secure public support for whatever criteria are selected. This is the time for asking and grappling with the difficult questions, such as whether age should be a legitimate criterion for allocating ventilators or vaccines during a pandemic of influenza, and what percentage of the national wealth should be allocated to helping other nations cope with threats that implicate all countries, such as pandemic influenza. This process should take place at all levels in society, from town councils to state and federal governments.
If this job has been done adequately during the planning phase, substantive criteria for distribution and fair processes should already be in place awaiting deployment during the response phase. This is not to suggest that advance planning will obviate the need for thinking about justice in the thick of an emergency. Like war, public health emergencies have a way of foiling the best laid plans and wreaking havoc with carefully wrought protocols. Resources will be exhausted and personnel will be stretched to the breaking point, and no matter how much planning has taken place, health officials will no doubt be surprised and confounded by events at hand. Hard choices in the thick of disaster will have to be made.
In addition to the planning phase of emergency preparedness, the recovery phase is also a period when serious considerations of distributive justice, equity, and fairness should be factored into policy- and decision-making. Even as background social inequalities and special vulnerabilities may magnify the disruptive effects of a public health emergency on certain individuals or groups, so, too, will such background factors affect how readily certain segments of a community will be able to recover and rebuild following a disaster event or emergency situation.
Justice during the recovery phase involves allocation of scarce resources among individuals and groups in need, and it is closely tied to the notion of resilience at the level of entire communities. A community marked by just social practices and a commitment to social justice before an emergency is likely to carry that commitment through the emergency response and into the aftermath and recovery period. Such communities are likely to be better able to rebound quickly and recover effectively, and such communities will likely meet the benchmarks of both justice and resilience in their recovery process and outcomes. Resources will normally be scarce during the recovery phase, and the pace of rebuilding and recovery will not be the same for everyone who needs these resources and assistance. Priorities will have to be set concerning when and in what order people receive assistance, even if eventually there will be sufficient recovery resources to go around.
Policies and decisions that meet the ethical tests of justice will not place an undue burden on any one segment of the population in the recovery phase, and such policies will attempt to bring about as even-handed and uniform a pattern of assistance and recovery as possible. Generally speaking, priority in recovery efforts should be provided on the basis of greatest need and greatest impact. Those who will be otherwise homeless, for example, might be given priority on lists for temporary housing and shelters over those who have family or other private means of temporary housing assistance. Those at greatest health risk because of the dislocation of their ordinary routines and modes of living should be given special attention in preference to those who are experiencing inconvenience but are not being placed at serious risk. Those whose small businesses cannot survive a prolonged closure or period of inactivity might receive priority for available business recovery loans.
Not only the fact of recovery assistance per se, but also the nature and timing of that assistance are important factors in the distributive and priority-setting decisions in the response phase of emergency preparedness. An old saying in the criminal justice context, “Justice delayed is justice denied,” can be adapted to a similar maxim for emergency preparedness: “Assistance delayed is assistance denied.” This consideration bears especially on the mechanisms that are set up to handle the allocation and utilization of recovery assistance.
Here, considerations of justice cut two ways. On one hand, justice requires that waste, fraud, and abuse be prevented as much as possible so that assistance actually does arrive at its intended and appropriate destination. Procedural and administrative safeguards should not be lightly dismissed as mere “red tape”; they have an important ethical function in any public service setting. On the other hand, excessively restrictive, bureaucratic, and inflexible procedures during the response phase will also undermine the goal of justice. Health officials must not spend so much time determining whether a patient is eligible to receive a medicine that the patient deteriorates while waiting. They must not make it so onerous to restore business functioning, education, housing, environmental remediation, and other elements of recovery that a community expires from outmigration, capital flight, and social despair.
Meeting the Special Needs of Vulnerable Populations
Previous sections have focused on the ethical values of life, safety, health, liberty, and justice [as fairness and as welfare maximization] in the context of emergency preparedness. The theme that unites these various discussions is the reconciliation of respect for persons and individual dignity with service to the entire community and the common good. This theme can be deepened and explored more fully in the context of protection and service to those who, in an emergency event and its aftermath, will be especially vulnerable to harm and injustice—the loss of life, health, or dignity.
During a public health emergency, all persons experience unusual and often urgent needs for rescue, protection, vaccination, medical treatment, and other public health support. To that extent, any emergency makes everyone “vulnerable”; no one is completely self-reliant, and serious and urgent needs call for an ethical response of mutual aid, caring, and attention. Nonetheless, some persons and groups have background conditions and situations that compound their vulnerability during emergencies and expose them to special kinds and degrees of risk and disruption [Kailes, 2005a; Levine, 2004]. These background conditions call ethically for special provision, accommodation, and concern.
The ethical goals of emergency preparedness understood as a civic practice all point in the same direction: persons and groups with physical, cognitive, or emotional vulnerabilities and those with social, cultural, and geographic vulnerability should be given special attention and recognition in the emergency preparedness process [Wizemann, Reeve, & Altevogt, 2013b]. These individuals should not be left to “fend for themselves,” even temporarily during an emergency. They may not be able to evacuate without special assistance; they may be particularly susceptible to infectious disease, which targets those whose immune systems are not only compromised by chronic illness or age but also by inadequate diet and other circumstances of poverty.
A concerted effort to anticipate and plan for addressing special needs and accommodating special vulnerabilities is an essential part of preparedness planning [Davis & Mincin, 2006; Drexel University Center for Health Equality, 2008]. During the planning phase, this effort most often involves direct consultation with and participation of those with special knowledge or lived experience pertinent to individuals and groups who have such special needs. Then, during the response phase, an equitable use of resources and a genuine commitment not to abandon those at special risk must inform the decisions and mitigation activities during the emergency response phase and its aftermath. Finally, the concept of vulnerability and special need should continue to be taken into consideration and recognized during the recovery phase [see Chapter 3].
Emergency preparedness cannot be a substitute for a progressive effort to improve services for those who are vulnerable or who have been pushed to the margins of society—those on the receiving end of racial and ethnic discrimination, those in poverty, those living with chronic illness and disability, or those in need of long-term care. However, it can at least try to ensure that persons and groups with special needs are not forgotten or abandoned in times of crisis or emergency; that they, too, will be rescued, protected, and provided for; and that they, too, may hope to survive an emergency and emerge on the other side to resume lives of dignity and meaning. Emergency preparedness can also benefit from the strengths and assets present in the neighborhoods and communities where vulnerable persons live because these communities often have the local knowledge, trust, and outreach capabilities that are essential to effective emergency preparedness.
The Concept of Vulnerability
The concept of vulnerably refers to social, economic, and cultural inequities as well as to biological impairments. Vulnerability may be a function of the genotype, physiology, or personality of the individual. However, the full ethical implications of vulnerability become apparent only when it is understood in a social context. Vulnerability narrows the options and undermines the practical capabilities of individuals to flourish in times of normal activities and to take care of themselves in the face of danger or disruption [Vawter et al., 2011].
Disasters tend to highlight and exacerbate the deep social fissures and chronic social injustices that haunt a society. Shortcomings in emergency preparedness and response are often a function of preexisting inadequacies in the public health infrastructure and in other service systems. The devastation of New Orleans and other areas along the Gulf Coast in 2005 after Hurricane Katrina vividly demonstrated that some individuals and groups are much less able than others to protect themselves and to take advantage of public health and public safety systems, even when those systems are functional and accessible [which they sometimes are not] [Strolovitch, D., Warren, D., & Frymer, P. [2006]. It also revealed the moral shame of discrimination and unfairness that can easily arise when resources are scarce and systems are under unaccustomed stress [Cooper & Block, 2006; Gilman, 2006; Strolovich et al., 2006].
Although difficult to define precisely or to enumerate exhaustively, various types of vulnerabilities and special needs exist that can inhibit or even paralyze effective or appropriate behavioral responses during emergencies. Emergency preparedness must plan for and make special deliberate efforts in advance to accommodate them [Kailes, 2005b]. Again, vulnerability is not limited to states of special physical or emotional dependency on others, such as may characterize those with sensory or motor impairments, those with developmental or cognitive impairments, those with mental illness, children, or those who are frail and elderly. Vulnerability is also a function of social, cultural, racial, linguistic, and geographic disadvantage. Physically able-bodied and mentally capacitated persons may nonetheless be living in a condition of social vulnerability and precariousness. This form of vulnerability can be due to such factors as racial discrimination and stigma, poverty and lack of resources, lack of access to functioning and empowering social networks, or living in an area that has lack of access to services and resources or lack of access to transportation.
For these reasons, diverse types of special planning and accommodation are needed in emergency preparedness in order to meet the goals of justice, individual liberty and respect, and sustaining or rebuilding of resilient communities. Vulnerability does not necessarily mean helplessness. Vulnerable individuals and communities are often healthy and resilient, with many assets and resources, although those outside the community looking in often misjudge these factors. This fact was compellingly depicted in the 2012 film, Beasts of the Southern Wild, which told the story of people coping with the aftermath of the post-Katrina flooding near New Orleans.
Finally, vulnerability influences the ways in which people interpret the meaning of their experience and their overall life situation. Emergency preparedness activities need to be culturally, as well as physically and medically appropriate. They need to take into consideration the existing memories, sentiments, and prevailing attitudes of the persons or communities in question, each of whom will have experienced their particular “vulnerability” in a distinctive way that must be acknowledged and honored if trust and cooperation are to be established. Much of this depends on forging proper relationships, effective and trustworthy partnerships, and open, two-way lines of communication between emergency planning officials and distinct communities and neighborhoods during the planning process.
The question of how an emergency plan ought to account for and accommodate the special needs of vulnerable populations provides a kind of microcosm in which most of the ethical dimensions of emergency preparedness can be found. The cultural and social components of vulnerability have often been overlooked or discounted in the field of public health emergency planning [University of Florida, 1998; US Department of Homeland Security, 2005; US Department of Justice, 2006; National Council on Disability, 2008; National Organization on Disability, 2008]. That should change—and is changing—because the cultural and social components of vulnerability are significant in their own right, both for affected communities of class or color and for persons with disabilities, for whom social vulnerability, perhaps as much or more than biological impairment, is a significant risk factor in their lives [Drexel University Center for Health Equality, 2008].
Anticipating and Addressing Special Needs
These vulnerabilities come from many different sources and situations, including chronic physical or psychiatric disease; physical, sensory, or motor impairments; cognitive or emotional impairments; developmental immaturity or disability; physical isolation; social isolation; poverty and lack of material resources; lack of support systems and other social resources [e.g., homelessness]; fear of contact with authorities [e.g., the reluctance of undocumented aliens to call official attention to themselves]; and strong emotional reactions, such as fear or a desire to maintain the status quo of normal life and everyday routine [“I will not leave my home!” “What is going to happen to my pet?”]
Several groups in particular will warrant more complex accommodations. First, research has demonstrated that racial and ethnic minorities suffer disproportionately in the wake of emergencies. They are more likely not to be adequately prepared and to experience more injuries, diseases, and deaths. Public health emergency planning must address these racial and ethnic disparities in preparedness [Pastor et al., 2006].
Persons with some types of mental illness find it difficult to plan ahead, may be oblivious to warnings, and, in some cases, may be fearful or paranoid about participating in mass events such as evacuations. Additionally, some people with mental health concerns do not consider themselves ill, will not self-identify beforehand, and may resent being asked to participate because of the stigma associated with mental health problems. Some may refuse to evacuate and may place responders at risk when they are sent back into dangerous areas to provide rescue.
Likewise, persons with certain intellectual disabilities or other medical conditions that interfere or limit ordinary cognitive functioning may be particularly hard to reach [e.g., those with mild cognitive disabilities who may be living independently in the community]. These individuals often are very isolated, have jobs with few friends or close colleagues, and often find comfort in a very steady routine. In such cases, they will be less apt to leave a home or disrupt a schedule they know well. They may be more likely to ignore warnings to leave the area and may be particularly fearful about evacuating because they are unable to figure out the complex set of instructions about where to go, whom to contact, and what to take with them [Elder et al., 2007]. The more stressful and confusing the circumstances, the more likely some individuals are to retreat to their home or apartment and try to stay put until the stressful situation is over. These persons, in particular, will need special outreach long before an emergency occurs [James, Hawkins, & Rowel, 2007; US Department of Justice, 2006].
For example, consider the situation of a family trapped in their home by rapidly rising flood waters. In the family is a teenage boy with autism. When rescue personnel arrive, they find that a great deal of time and special communication skills are required to coax the boy into the waiting boat. The rest of the family will not leave without him. Is it feasible to deploy personnel with such skills, even if the location of families with autistic children is identified in advance as a part of the emergency plan? If many other families are waiting for assistance, is it justified to use coercion—physical restraints or medical sedation without informed consent—to remove this family more quickly? [Molotch, 2006].
To attempt to give a general answer to such an ethical dilemma is difficult and possibly misguided.9 Difficult judgments will have to be made on the scene, taking very particular circumstances and assessments into account. Tragic choices cannot be entirely avoided in the response phase of an emergency. What can be strongly affirmed, however, is that appropriate advance planning and early identification of special needs can reduce the number of ethical dilemmas and tragic choices of this kind that will arise during an emergency response. The human cost and suffering caused by poor planning and lack of preparedness is the foundation for the ethical duty to plan and prepare well.
It is also important that emergency preparedness take into account the population of isolated persons in a given area. This includes persons who, for cultural, geographic, or social reasons, generally do not fall into any other category. Examples are persons who travel from one area to another seeking seasonal work, those who are homeless and living on the streets, those who are part of religious or cultural groups who specifically avoid contact with the outside world, and individuals and groups that historically have avoided interactions with government agencies. Another example of particular vulnerability that should be factored into emergency preparedness, especially during the planning and recovery phases, is illustrated by the impact of Gulf Coast hurricanes on the resident Vietnamese communities. Many in these communities are dependent on the fishing industry and have difficulty accessing services for linguistic reasons.
These and countless other examples are reminders that vulnerability takes many forms and manifests itself in many different ways. Personal health and safety may be put at risk; people may be displaced from their homes and supportive communities; people may be displaced from the broader economy; and people may, for linguistic or cultural reasons, be isolated from the mainstream sources of communication and social support services.
Those in charge during an emergency should have information concerning the number or location of isolated and otherwise vulnerable persons if preparedness planning has been done properly. But, during an emergency response, they must be able to retrieve that information quickly and act on it rapidly. Thus, it is crucial to keep such information up to date and maintain it in a form that will be accessible in an emergency.
This may require close and culturally appropriate cooperation with established ethnic, religious, and minority groups in the community, and such special outreach measures should be anticipated and planned. In many communities, for example, a kind of census of special circumstances and needs [e.g., housebound individuals] is taken by volunteers on the neighborhood level. This information is then communicated to public health and other government agencies, such as volunteer fire departments, so that they are better able to plan in advance to meet those special needs during an emergency.
In emergencies, when transportation is difficult and telecommunication unreliable, local emergency responders must have precise local knowledge concerning detailed special needs and precise physical locations. Links to such groups can be established beforehand by local emergency personnel, but, in times of emergency, proactive contact and outreach by authorities to these groups is essential. It cannot be assumed that they will receive information through media or through outreach by community-based groups, such as faith-based organizations, existing social networks, or volunteer groups.
Communicating emergency information to geographically and socially isolated individuals and groups may be especially difficult [Falkheimer & Heide, 2006]. Some may avoid, or not have access to, mass media. Some may live in temporary quarters and not know the local area well enough to be able to follow evacuation information or instructions. Those who are isolated from others—for example, someone living in a motel at the edge of town for a couple of weeks or someone with a mental health problem living on the streets—may not interact with others on a daily basis or hear about a disaster or an upcoming emergency. Prior listing of where isolated individuals and groups exist in the community and advance identification of a specific person [perhaps with special training] assigned to follow up in times of emergency, may help reach out to these people. Those who work directly at the street level with isolated, displaced, or homeless persons probably have the most information and rapport with this population, and they can be a valuable resource for emergency preparedness planning.
Recommendations for Preparedness Planning for Vulnerable Populations
Persons and groups with special susceptibility to harm or injustice during public health emergencies exist in virtually every community and should be carefully identified and assessed during the planning process undertaken prior to emergency events. Without such pre-emergency event preparation, their special needs are unlikely to be met on an ad hoc basis during an emergency in progress. Advance planning and preparation are vital to protect these individuals:
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Emergency preparedness planners should consider establishing a system whereby individuals with special needs and vulnerabilities can voluntarily register or otherwise identify themselves to local public health officials. Alternate mechanisms are important because the formal process of registration may deter many people from participating. Enlisting the aid of well-trusted and respected community-based organizations is a key to emergency preparedness effectiveness. Such an approach begins with a general information and education effort to alert the community to the existence of the registry system and to answer their questions and concerns about it.
In most communities, there will probably then be two additional phases. The first will be an initial [and ongoing] voluntary phase during which individuals in the community take the initiative to put themselves into the registry. This should be accomplished in a variety of ways and made as convenient as possible. In the second phase, an effort is made to include those who do not voluntarily self-identify. One way to accomplish this is to enlist the cooperation of neighborhood and community groups, such as clinics; local physicians; senior centers; independent living centers; churches; trusted voluntary organizations in the community that offer special programs, shelters, and services; and local chapters of groups serving those with chronic diseases.
The creation of special-needs databases for planning purposes raises a number of ethical questions. Should these lists be voluntary, as we recommend, or mandatory? What incentives to register, if any, should be employed? Should individuals be permitted to designate themselves as in need of special assistance, or should some more objective basis for creating such databases be used? How can such lists be kept up to date? Who should have access to the database? How can databases be more effectively shared in a timely fashion? Should there be one central [i.e., regional or state] database? How should all of this be managed to balance privacy and emergency needs?
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Public health officials should identify and work with community partners who have gained the trust of racial and ethnic minorities in order to identify at-risk persons. This should be a critical element of emergency preparedness because racial and ethnic minorities might be less likely to accept a risk or warning message as credible without confirmation of the message from their trusted interpersonal networks [Spence, Lachlan, & Burke, 2007; Spence, Lachlan, & Griffin, 2007]. Another barrier to emergency preparedness is that racial and ethnic minorities might distrust government officials and think that they are hostile, if not apathetic, to their well-being [Elder et al., 2007; Wray, Rivers, Whitworth, Jupka, & Clements, 2006]. Following Hurricane Katrina, for instance, undocumented immigrants avoided recovery assistance because they feared deportation [Carter-Pokras, Zambrana, Mora, & Aaby, 2007]. As part of the planning process, public health officials should work with churches, grassroots organizations, community-based organizations, and voluntary associations to develop culturally and linguistically appropriate strategies to identify at-risk individuals. For example, many African American churches maintain health ministries, and these may be a useful means to identify members of their churches who are at risk.
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Auditing and mapping community assets [i.e., individuals with particular local knowledge or groups with special trust and loyalty in the community] should be an integral part of emergency preparedness. To acknowledge that certain individuals, groups, neighborhoods, or communities are vulnerable to severe risk and disruption during a public health emergency is not to say that such communities are lacking in all assets or resources. On the contrary, vulnerable communities are not helpless. They simply need special advance planning and accommodations in order to help and sustain themselves. This reinforces the concept that emergency preparedness is and must be a civic practice actively involving all strata of civil society and not simply a centrally planned and top-down effort made on a service provision [consumerist] or public safety model.
An important element of auditing and mapping community assets is assessing the community’s cultural diversity to make sure that preparedness efforts are conducted in a linguistically and culturally appropriate manner to ensure that all community members are included. A cultural assessment would answer such questions as what racial and ethnic groups make up the community, what languages they speak, what are their cultural perceptions of risk and emergency, what are their preferences for warning dissemination, and what are the trusted organizations and institutions.
Emergency plans should anticipate the need to provide linguistically, culturally, and functionally appropriate informational and educational resources for vulnerable or dependent individuals, their family members, and others who care for them about what to expect in times of emergency. This can be done both as part of general public education in times of emergency and through targeted education. It is perfectly ethical to say, “Mrs. Smith, you have a child who is ventilator-dependent and a wheelchair user. If you hear reports that the area will be evacuated in advance of the oncoming hurricane, please prepare to have your family ready to evacuate 24 hours before evacuation is expected to begin for the rest of the population.” Having someone aware of this for several months or even years beforehand—and not at the last minute—would certainly be an ethically acceptable approach.
The provision of culturally and linguistically appropriate information is critical to overcoming language and information barriers. According to 2005 US census data, nearly one-third of Spanish-speaking residents spoke English “less than well.” However, most warnings about Hurricane Katrina were provided in English only. Language barriers contributed to information delays about the path of the hurricane, delays in evacuations, and difficulties in understanding emergency messages [Messias & Lacy, 2007]. Dissemination of preparedness information in languages that reflect a community’s diversity is an essential ingredient for ethical planning and implementation of emergency preparedness. To better assist people with limited English proficiency, emergency planners might develop partnerships with medical interpreters and learn how to work effectively with them or even integrate them as part of the preparedness team.
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Public health planners should not overgeneralize or base emergency preparedness on stereotypes or unexamined assumptions concerning those with special needs. The pitfall of stereotyping or overgeneralization of beliefs and attitudes should be avoided in emergency preparedness for all vulnerable groups—those who experience social and cultural marginality as well as those living with disability. Differences of cultural and geographic origin matter to people. Broad categories, such as “Hispanic,” “African American,” and “Asian American” are of limited value for emergency preparedness. A much more fine-grained understanding of local community and individual perspectives, values, concerns, and differences is required in this type of planning. Persons with disability are often ill-served by stereotypes and broad categories of classification as well, being often viewed, for example, as isolated individuals or as belonging only to special groups cut off from the mainstream. However, many people with disability do not see themselves as part of a single group, and this is particularly true for those who are chronically ill or disabled later in life. Most people with disabilities have family members or significant others who are not disabled and will not want to be separated from them.
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To facilitate good planning, individuals with special needs or their representatives should have an opportunity to participate actively and directly in the emergency preparedness process. Emergency planning should draw on sources of local knowledge and familiarity with the everyday life and habits of various cultural groups and neighborhood communities. People with special needs are not simply a “problem” for emergency planning; they can be a valuable resource for it as well. To date, the means of communication in the planning process have not been as open or as inclusive as they should be. Better communication is needed to enable emergency planners to understand the special needs and concerns of vulnerable members of the community. This can in turn lead to more effective planning because they will be able to anticipate behavior and response to emergency situations [National Council on Disability, 2008; Spence, Lachlan, & Burke, 2007].
In particular, making appropriate and equitable provision for vulnerable individuals and groups in emergency plans requires input from those with direct experience and with insight into the perspectives of those living under conditions of vulnerability, marginality, or discrimination. Avoidable mistakes and miscues will occur if good and well-established lines of communication have not been formed between the disability community and public health officials. A motto of the American disability rights movement is, “Nothing About Us Without Us,” and this could well be the aspiration of other vulnerable groups as well. It is an appropriate reminder and rule of thumb for emergency planning.
Identifying those with special vulnerabilities and needs and setting up special services and accommodations for them in advance of an emergency is critical so that they will not be the neglected or fall between the cracks [Drexel University Center for Health Equality, 2008; National Council on Disability, 2008]. Once scarcities begin to emerge in an emergency situation and priorities begin to be set, vulnerable populations are likely to be lost in a general sea of trouble and need. When many needs are calling for attention, the voice of the vulnerable is most likely to be drowned out unless it has been heard in advance and special provisions have been made. Direct participation or consultation in the emergency planning process by those with special experience or expertise concerning vulnerable populations can prevent these deficiencies.
Emergencies that call for rapid, large-scale evacuation measures provide many examples of this potential shortcoming of preparedness plans. The events surrounding Hurricane Katrina showed that large numbers of people in low-income areas do not own cars and cannot be evacuated unless transportation is provided for them. Officials also discovered that emergency transportation arrangements that had been provided for in preexisting planning were not uniform but worked differently in different parts of the city. In addition, they learned that many other circumstances faced by low-income persons can complicate evacuation planning. Those who do not have access to banking services, for instance, often keep their valuables at home and are reluctant to leave their homes for that reason.
Individual family situations also complicate evacuation, and planning must aim toward keeping families together. Emergency shelters need to accept and accommodate pets, or their function will be undermined. Also, many persons with disabilities, those in wheelchairs for example, will refuse to be evacuated unless they are taken out with their families. Public health officials need to know in advance where persons with disabilities and other special needs are located and have appropriate transportation available to get them out of the area [accessible vans for example], and they must be willing to evacuate nondisabled family members at the same time. The challenges continue when persons using wheelchairs reach shelters, for whom mobility requires a reliable electric power source. Another example is that of persons with cognitive or developmental disabilities who often have very set routines and will refuse evacuation rather than disrupt that routine. They may fear, for example, that they will lose their jobs if they do not show up for work. A prior plan and prior discussion at work could alleviate this.
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Public health measures, such as social distancing, designed to limit the spread of infectious disease pose special problems for those who rely on outside help. Persons with disability and working mothers with young children are often dependent on caretakers or others who come in and out of their households on a daily basis to do specific tasks or help with specific chores. When attendants or child care workers are too sick to show up, or they are barred by their agencies from providing care because of fear of an infectious disease, the consequences can be very serious [Uscher-Pines, Duggan, Garoon, Karron, & Faden, 2007].
Family members and others who regularly check on someone with a disability may not heed warnings about not interacting with others. They must weigh the possibility of infection versus the concerns about the immediate needs of those for whom they care. Unless alternatives are put in place [such as some sort of visiting nurse service], these caretakers understandably may not heed warnings to stay away.
There is an important connection between foreseeing and accommodating special needs and circumstances in emergency preparedness planning and the type of behavioral response and compliance with the plan that an actual emergency event may elicit in the community. Response efficacy, promoting the general welfare, and adhering to the principles of justice are all involved in advance planning to meet the special needs of the vulnerable. Making special provisions for vulnerable populations will also have an effect on the behavior of emergency responders and many able-bodied adults, so the overall success of emergency response plans is affected by the planning steps taken on behalf of the vulnerable. In emergency planning, as in many other areas of social policy, doing well requires doing good.
Communication and Participation in Emergency Preparedness
Two distinct but closely related facets of ethically sound emergency preparedness are “transparency” and “inclusiveness.” Both involve the relationship between planners and public health professionals [as well as other leaders, opinion shapers, and elected officials] and the general public—the community and citizenry whom emergency preparedness exists to protect and to serve. Transparency has to do with external communication—moving information from the planning organization to persons outside that process. Inclusiveness concerns the internal conduct of the planning process. Transparency has to do with the content, style, and timing of public communications; inclusiveness with the active role of community members or representatives in the deliberations leading up to the plan itself.10
Provision for both transparency and inclusiveness must be made in emergency preparedness; both are vital to ethically sound, accountable, and practically effective preparedness and response. Ethical considerations push emergency preparedness toward transparent, respectful communication with community members because they have a right to truthful information and because they need that information so that they in turn can fulfill their civic and personal obligations during a public health emergency. Ethical considerations also push emergency preparedness toward formal and meaningful inclusion of ordinary citizens in the planning process and decision-making. There are both principled and practical reasons for this. Individuals have a right to deliberate about and influence decisions and policies that materially affect their own safety, health, and well-being. In addition, open, inclusive, deliberative planning will build the necessary foundation of legitimacy and public trust required by an emergency preparedness effort. Finally, inclusive participation will provide for feedback and self-correcting mechanisms that will improve the efficacy of preparedness measures [see Chapter 4].
Transparency and the Communication Spectrum
Emergency preparedness communication may be thought of as a spectrum of message transmissions. At one end is the direct conveying of information alone, without embellishment. That information may be about environmental conditions [“A level-four hurricane is expected to make landfall in 12 hours at location X”] or about instructions or commands [“When the alarm sounds, proceed to the nearest underground shelter; do not bring your pets with you”]. Further along the spectrum is communication that conveys information but also conveys judgment, explanation, and rationale. This type of communication admits uncertainty and probability; it attempts to persuade rather than simply to instruct [“Residents are advised to fill bathtubs with clean water and prepare for the possibility of widespread power outages”]. These two types of communication are essentially one-way circuits, from leader to constituent, from authority to citizen.
However, good communication is more than simply providing factual information, and transparency requires more than simply telling people what has already been decided. Communication should involve a two-way form of exchange and provide the resources necessary for the public reasonably to reflect on and come to accept or reject proposed planning decisions. Communication about emergency planning—as distinct from emergency response—should be like [very good] political campaigning—the Lincoln–Douglas debates, for example—not like listening to the weather report. Thus, further along the spectrum of communication are two-way communication and feedback loops. The general public is enabled to comment on the top-down messages they have received and to ask questions about them.
Even further along the spectrum is the area of communication in planning that involves more active and direct grassroots participation, wherein lay persons have an opportunity not only to react but to participate in forming the plan from an early stage. Community forums permit discussion that is proactive rather than reactive, and these forums can produce ideas and information that may be factored directly into the ongoing planning process. This “community consultation” or “public engagement” can make a significant contribution to planning communication as well as to the planning process. Properly done, it can promote both transparency and inclusiveness. Community consultation makes for more intelligent planning before an emergency and better compliance with the provisions of a plan during and after an emergency [Keystone Center, 2007; Schoch-Spana, Franco, Nuzzo, & Usenza, 2007]. In this role, it contributes to the discovery of factual information and the making of evaluative judgments.
The special area of risk communication requires additional consideration [Krimsky & Golding, 1992]. Public health information prior to and during an emergency is often complex, hard to comprehend and assess, and often uncertain or probabilistic in nature [Silver, 2012; Sunstein, 2007]. Under these circumstances, communication is especially difficult because the message sent and the message received may be quite different. Recognizing this problem, some in public health might argue for tight control of information and release of only minimal information during emergencies.
Another line of thought, which is growing in influence and which we believe is more desirable, is to have confidence in the ability of the public to handle information and to appreciate frank admissions of uncertainty on the part of public health officials. The public, far from losing trust in officials due to such openness and candor, responds well to it, while responding quite negatively to secrecy and deception when it learns about them after the fact.
The days of public health mitigation activities that are nonconsultative and paternalistic are mostly behind us. In recent years, public health practice has moved from the command pole of the communication spectrum toward the deliberative and participatory pole [Buchanan, 2000]. Yet many conceptions of emergency preparedness are built around benevolent authoritarianism and paternalism, and they draw on models of public health communication that rest on more or less manipulative incentives and behavior modification approaches [Thaler & Sunstein, 2008]. This remains a lively area of debate within public health as a whole. The notion that public health professionals direct the communities they serve toward better health is giving way to the notion that public health cooperates and collaborates with communities and individuals in a joint civic pursuit of improved health.
Inclusiveness: Civic Participation in Emergency Planning and Recovery
The benefits of inclusiveness and direct participation in the planning process, at least by representatives of grassroots groups and engaged individual citizens, can be substantial [Garrett et al., 2009]. Such participation can alert the planning process to concerns, cultural perspectives, and other vital factors that professional planners may overlook [Schafer et al., 2008; Schoch-Spana et al., 2007]. A sense of investment in emergency planning may lead to better community coordination and, ultimately, compliance later on. Deliberation does not inevitably lead to consensus, to be sure. But it can broaden horizons and encourage a civic, public-spirited attitude [Chambers, 2003; Gutmann & Thompson, 1996].
Well-managed participation and inclusiveness can have the same effect as timely, honest, and candid communications in promoting public trust and legitimacy and, hence, a greater willingness to cooperate during an emergency. Indeed, without these things, public trust is unlikely in today’s society. Normal channels of interest group bargaining and lobbying no longer enjoy public confidence; they have been discredited by spin, misinformation, and financial influence. Nothing will make cooperation and the maintenance of order during an emergency more difficult than widespread mistrust and suspicion of leaders and authorities [Wray et al., 2006].
There is not a sharp line between community consultation or town hall meetings concerning emergency preparedness, on the one hand, and the inclusion of community representatives in the planning process, on the other. This distinction has to do with the numbers of participants involved, recruiting them, and their qualifications for the task at hand. It also has to do with the distinction between input that is advisory and input that has some more authoritative status. Community representatives are never given veto power over important decisions, but once they are accepted into the process, emergency planners must accommodate their wishes and needs to a great extent. Because these individuals will have access to information that is not generally publicly available, and because their roles and identities are known so they become points of attention by the media, they carry some influence. The political costs for elected officials of neglecting them or pushing measures through over their opposition can be substantial.
The personality and style of individual community representatives and the external pressures they are under will influence the roles they play in the planning process. They can generate conflict and be a disruptive presence for experts and staff, which could have the unintentional beneficial effect of forcing staff to broaden their agenda and their ways of thinking. However, they also may want to play a disruptive role in the process in order to reinforce their power and standing with their constituency.
The converse of this type of conflict in professional–lay relationships is generally referred to by political scientists as “cooptation” [Selznick, 1949/1984]. Here, the community representative is led, usually by subtle psychological means, to identify more with the insider professionals than with the external constituency or community. Professional and bureaucratic interests seem to merge with community interests. The representative ceases to represent the grassroots in the sense of protecting their rights and giving them voice. Instead, the representative internalizes the same paternalist attitude toward the public that many insiders have.
Neither conflict over hidden agendas nor cooptation is what the ethical values of inclusiveness require. These considerations point to the importance of the selection process for community representatives. In general, we support inclusiveness and lay participation in emergency preparedness. However, it is rarely desirable to politicize the planning process. Appointing community activists with their own independent agendas, therefore, is less desirable than appointing more independent, detached individuals who are respected and trusted by broad sectors of the community. Such persons are genuine civic leaders and are more likely to be guided by the common good of the whole community. They can contribute well to a planning process that is both effective and has ethical integrity.
Communication During the Response Phase
Thus far, we have considered communication and participation largely in the planning and recovery phases of public health emergencies. The response phase requires a different kind of analysis. For effective communication and transparency, the prime imperative is to provide the most reliable information available in a timely manner. During an emergency response, the conditions are not auspicious for deliberation and consultation. Fear, insecurity, and uncertainty about the immediate future are not conducive to thoughtful, deliberative participation by citizens in any case, and, during an emergency, panic may lead people to undervalue the rights and interests of minorities or those who are stigmatized. Blame, rumor, and stigma are normally rampant during a time of crisis, and emergency planners should anticipate and attempt to minimize these outcomes [Barnes, Novilla, Meacham, McIntyre, & Erickson, 2008].
Good communication during the response phase can dampen bigotry, counteract rumor, and prevent or minimize panic. It is important for public health responders to have a good working relationship with the local press and, in all communication, to resist the urge toward benevolent deception or withholding of accurate information. Transparency, candor, and openness will serve both ethical and practical objectives. Communication during the response phase has a direct bearing on the choices ordinary people make and the risks that they are subjected to. Emergency responders should recognize the potential consequences of their actions in this regard, and their ethical obligations are not set aside simply because they are working often under very trying circumstances. Good advance planning, clear lines of responsibility and communication worked out in advance, and a carefully built and earned reservoir of public trust will help. Absent this, it is unlikely that any response effort will go well. Even with these factors in place, response-phase communications will be replete with hard choices.
Transparency counsels emergency communicators to trust their audience even as they need the audience to trust them. The public does not expect infallibility from emergency preparedness; it does expect fidelity. Transparent emergency communications follow these rules of thumb:
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Acknowledge uncertainty.
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Provide follow-up information as quickly as possible.
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Advise patience and flexibility.
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Admit mistakes and move on.
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Provide advice that fits the context and can realistically be acted on.
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Do not abandon the community, and do not appear to be doing so.
Participation During the Response Phase: Volunteers
Community representation and grassroots participation mark inclusiveness during the planning and response phase of emergency preparedness. However, the major aspect of participation that arises in the response phase is volunteer participation in the implementation of response plans and in providing services and staffing. Volunteerism is a double-edged sword. On one side, it is one of the most admirable aspects of any emergency situation and, as such, should be encouraged and applauded. On the other side, it can cause managerial and technical nightmares and reinforce the adage that the road to hell is paved with good intentions.
Sometimes the sheer number of volunteers can overwhelm the beleaguered professionals at a disaster site. The safety of the volunteers becomes a new issue to reckon with. Planning should include the provision of resources to supervise, train, and use volunteers effectively. How essential their function is will vary from one emergency situation to the next, but to actively discourage or restrict them from doing something to help is highly undesirable from the long-term point of view of community well-being and morale, no matter how expedient it may be in the short term. We are reminded of the conflict that almost broke out between the New York City police and firefighters at the World Trade Center debris pile when the former had been instructed to prevent the latter from joining the search for buried victims [Langewiesche, 2002].
An interesting aspect of using volunteers during an emergency arises in the provision of medical care and in performing medical procedures. Many state laws restrict such activities to licensed physicians and nurses, but, with some relatively simple training, others may reasonably be permitted to perform medical tasks such as starting intravenous lines, performing tracheotomies, and setting broken bones. The performance of medics in the military during combat demonstrates that something less than a medical or nursing degree will suffice. However, statutory change will be necessary, and the training resources are not currently in place [Hanfling et al., 2012].
In addition, the question arises of altered standards of care and legal liability. If someone sustains a serious injury while being cared for in emergency settings that do not conform to the standard of practice of normal times, should they be able to recover damages? Will their ability to do so make it impossible to set up a volunteer program as a part of an emergency plan? Should limits be placed on tort liability to protect those providing care and services in good faith during special emergency circumstances?
Many elected officials, policy-makers, and public health officials believe that lawsuits, to say nothing of litigious attitudes, are out of place in the context of public health emergencies and other emergency situations. Many existing state laws contain provisions limiting liability and access to the courts, and other states are considering adding such restrictions. The Model State Emergency Health Powers Act contains such a provision, for example.11 Yet the problem of responsible oversight and public accountability remains to be addressed. Officials should not be paralyzed by concerns about civil liability during emergency response, and volunteers should not be prevented from assisting by such concerns. However, what then would be the mechanism of quality control over the actions of volunteers and recent trainees? Tort liability is one such safeguard in the US system. Partly, this is a question of acceptable risk, and partly it is a question of a tradeoff between the ethical objective of reducing mortality and morbidity and the ethical objective of protecting individual liberty, autonomy, and respect for persons. Liberty [in this case, the right to judicial relief when one has been injured or wronged] and respect for persons are not to be set aside lightly, even when a person’s life is at risk. If liberty is limited in the name of protection, then it is contingent upon society to provide protection and not cause injuries due to improper management.
No doubt new laws and regulations will be developed that will balance the need for new standards of care during emergencies and the need to protect victims from neglect and incompetent treatment. This problem is not limited to nonprofessional volunteers. During emergencies, even physicians might have to do things that they would never do, in ways that they would never do them under ordinary circumstances [Health Systems Research Inc., 2005; New York State Workgroup on Ventilator Allocation in an Influenza Pandemic, 2007]. Further comment on the technical questions of how to achieve that balance in the law is not within the scope of this chapter. From an ethical point of view, although this remains controversial, we recommend that the balance be struck slightly in favor of limiting liability and encouraging the work of volunteers. Despite foreseeable individual injuries, this will be in the best interest of communities and of ethically sound emergency planning in the long run.
Does the Emergency Exception Preclude Transparency and Inclusiveness?
The legitimacy of public health officials is based on their objective qualifications and the objective outcomes they produce. Training and use of qualified staff are necessary but not sufficient conditions for legitimacy. Legitimate authority must also be accountable to the citizenry at large and to those most directly affected by decisions made by that authority.
Accountability also means transparency regarding the conduct of public health officials. Voluntary compliance with public health authority requires an understanding of the reasons and rationales for policies and a sense of trust that the public interest is motivating public health officials in their activities. These general considerations apply to public health at all times, but they are no less important in the context of emergency preparedness.
It is sometimes argued, however, that the time and resource constraints of an emergency situation make the ethical requirements of transparency and inclusiveness impractical or even undesirable. The notion of an emergency exception to the normal rule of law and governance takes an ethical form as what might be called the “emergency excuse” for using power in a style of benevolent authoritarianism and paternalism, for limiting liberty broadly, and for rejecting transparency and participation. This point of view excuses authorities for climbing the ladder of intervention very rapidly, two rungs at a time.12 We hold, on the contrary, that the emergency excuse in fact has less traction in ethical analysis than many in public health believe. It does not provide good grounds for setting aside the kind of ethical objectives we have offered in this chapter for at least two reasons.
First, whatever validity it may have during the response phase of an emergency, it does not apply to the planning phase, when time constraints are not so stringent. The link between transparency and later compliance is an important consideration to bear in mind during emergency preparedness. Second, even during the emergency response phase, when decisions have to be made under conditions of imperfect information and rapid response is crucial, it is still ethically necessary to differentiate between the reasonable and justified exercise of authority and power and the arbitrary, improper exercise of authority and power. Time pressure should not be used as a general excuse or reason to give officials an ethical carte blanche; if it is, the emergency response effort will most likely lack coordination and become a power struggle that will undermine effective response efforts. Adherence to the ordinary rules of morality and to the ethical objectives set forth here remains essential in emergency situations, not in spite of the fact that time is short and emotions are running high, but precisely because of these things.
Professional Obligations
Health care workers and other health professionals play pivotal, front-line roles in emergency response, yet the risks and divided loyalties [to their patients and to their own families, for example] they sometimes face can create serious professional, personal, and ethical dilemmas for them. Anticipating the reaction of health professionals and first-responders to these strains is an important component of emergency preparedness. Emergency plans spell out duties for specific individuals and groups who occupy particular roles in the response process. They also rest on an implicit gamble that those duties, with a small number of exceptions, will be fulfilled. It is important to note that this gamble is usually successful. But lessons can be learned from situations in which assumptions built into planning turn out to be mistaken. Although the story of health care workers and SARS was largely one of remarkable heroism and solidarity in the face of a deadly epidemic, hundreds of physicians in China refused to return to their posts [Brookes, 2005; Knobler et al., 2004b]. Many others around the world found themselves making anguished choices between serving the ill and protecting themselves and their own loved ones from the threat of deadly disease. Although SARS was eventually contained by rigorous infection control measures, including widespread quarantine, future public health emergencies, such as an epidemic of smallpox or avian influenza, could place health workers at much greater risk of severe morbidity and death. Beyond the level of individual practitioners, individual hospitals might shut their doors to new patients because of fears that they might contaminate existing patients.
Do health care providers have a moral obligation to risk illness and death in the line of duty, not merely in routine situations involving infectious disease, but also in the broader disruption of a major disaster or public health emergency? Do physicians, public health workers, nurses, and others have a moral duty to stay at their posts in the face of risk, or are such choices merely a matter of individual conscience for individual practitioners [Vawter, Garrett, Prehn, & Gervais, 2008]? One philosopher put the argument this way: “Society’s granting of power and privilege to the professions is premised on their willingness and ability to contribute to the social well-being and to conduct their affairs in a manner consistent with broader social values” [Frankel, 1989]. But if the conduct of professionals like physicians and nurses is governed by a special ethic of professional duty, how strenuous is this duty, and what are its limits?
Of course, such questions are not new. They were routinely faced by physicians and nurses before the advent of antibiotics, especially during times of plague and outbreaks of other infectious diseases. In 1912, the Code of the American Medical Association [AMA] stated that, during such times, “a physician must continue his labors for the alleviation of suffering people, without regard to the risk to his own health or to financial return” [Baker, Caplan, & Latham, 1999]. This principled stand was greatly attenuated, however, both by the AMA’s increasing emphasis on physicians’ untrammeled discretion in deciding whom to serve and, even more importantly, by the advent of the era of antibiotics, which gave the appearance of having forever vanquished life-threatening infectious diseases. During the brief period between the widespread dissemination of antibiotics and the rise of AIDS, the notion of a strong professional duty to treat in the face of mortal threat no longer seemed relevant to the medical community. But, as AIDS, SARS, Ebola, and the disturbing threat of pandemic influenza have amply demonstrated, the pax antibiotica was only a momentary reprieve, and the age-old questions about the duty to stand one’s ground in the face of risk press as urgently upon the medical community today as ever [Battin et al., 2009; University of Toronto Joint Centre for Bioethics, 2005].
One standard way of thinking about these questions involves the notion of a social contract between the professions and society. On this view, health professions are forging a contract of sorts with the society at large. Those professions endorse and enforce a duty to provide care for the sick even in the face of personal risk, whereas society, for its part, grants to the health professions [and especially to physicians] social esteem, comfortable remuneration, and, perhaps most importantly, a great degree of professional autonomy, including the exclusive legal right to practice medicine. Perhaps the most powerful feature of this social contract argument is its recognition that if physicians, through licensure, are to be granted the exclusive legal prerogative of practicing medicine, then physicians must provide care to those in need even in the face of personal risk. If they do not provide care when at risk, and if the bargain physicians have struck with society denies to all other groups [e.g., herbalists, acupuncturists] the legal right to step in and do so, then no one will remain to care for the sick in times of great social need. It is difficult to imagine the effects, both for stricken individuals and for society at large, if health workers and hospitals refused to accept gravely ill and highly infectious patients.
A corollary of this line of thinking stresses the obligations that health professionals bear toward one another. If a front-line public health worker, physician, or nurse refuses to come into contact with sick and infectious patients, the latter will not simply disappear; they will inevitably become the charge of other health workers. The question, then, is not “Why me?,” but rather, “If not me, then who?” If failure to care for patients in the presence of risk merely shifts the burden onto one’s fellow health professionals, who must then shoulder even more than their fair share of risk, then such refusals amount to a serious injustice toward one’s own colleagues.
An alternative approach to the duty to treat can be found in an ethic of virtue. According to this line of argument, the job of health workers is to attend to the needs of the sick. To do this job well, certain virtues are necessary, such as competence and courage in the face of adversity. Those who stress an appeal to the virtues as opposed to the social contract often respond, “This is who we are; this is what we do.” Those who fail to exhibit some degree of courage in the face of personal risk are like firefighters who refuse to rescue people trapped in burning buildings or police officers who refuse to pursue suspected criminals down dark alleys. Confronting some degree of personal risk comes with the job of being a health worker. Those who refuse to run such risks arguably misunderstand what it means to be a doctor, nurse, or public health worker. The virtue orientation focuses attention squarely and directly on health professionals’ mission of caring for those in need. The fact that this mission places such professionals in the path of personal risk lends it the aura of heroism and a higher calling—health professionals as civic guardians, not self-interested economic entrepreneurs.
The virtue perspective tends to focus on the individual health worker’s ethical identity and responsibility, whereas the social contract perspective tends to focus on the duties of entire professions rather than on individual practitioners. Strictly speaking, the contractual duties of the medical profession to the larger society are theoretically compatible with a robust right of individual physicians to treat or refuse to treat whomever they wish. So long as a sufficient number of physicians remains on the job to care for those in need, others could opt out as they see fit. Although medical history is replete with examples of such opting out during times of plague, the virtue approach would view such examples as deviations from what should be expected from all health professionals, overriding their professional autonomy to pick and choose whom they wish to care for. The virtue approach also underscores the importance of inculcating requisite virtues into each new generation of physicians, nurses, and public health workers. Students should be aware that their chosen profession comes with various risks attached, so that one’s eventual entry into such fields would presuppose a fully explicit acceptance of such hazards. Although such an acceptance was merely implicit, at best, during the period of the pax antibiotica, it must be fully explicit in a world threatened by AIDS, SARS, and pandemic influenza [World Health Organization, 2007].
Considered jointly, the social contract and virtue perspectives support a robust duty on the part of both the health professions collectively and health professionals individually to maintain their posts even in times of great social stress and threats of infectious disease. As elaborated so far, however, these complementary approaches may not be sufficient to account for three additional concerns: [1] What duties, if any, are owed by nonprofessionals providing health care and other emergency services? [2] What does the larger society owe to emergency workers? And [3], where should the line be drawn between professional duty [which is ethically mandatory] and what the philosophers call the realm of “supererogation,” conduct above and beyond the call of duty [which is ethically discretionary]?
Regarding the first concern, one lesson of the recent SARS epidemic is that the burden of some infectious diseases might fall most heavily on hospitals, where the sickest and most infectious patients go for care and, in many cases, for isolation and quarantine. Although public health and health care professionals often heroically put themselves in harm’s way, many nonprofessionals [including paramedics, radiographers, office workers, food service workers, and even janitorial staff] got sick, faced enormous psychological stress, and in some cases died during that epidemic [Knobler et al., 2004b]. Whereas the health professionals [eventually] enjoyed enhanced public esteem and were in most cases provided with the requisite information and technical supports to protect themselves, the nonprofessionals faced similar risks without the luxury of choice or comparable access to social rewards, information, and protection [Reid, 2005]. Now, assuming that the combined efforts of all these disparate professional and nonprofessional staff were necessary to keep the hospitals functioning in their battle against SARS, what can be said regarding the behavior of nonprofessionals during that crisis and possible future emergencies?
Neither the traditional social contract rationale nor the professional virtue approach sheds light on this question. Here, seeing emergency preparedness as a civic practice is helpful. The civic practice concept broadens the notion of a social contract between a profession and society because it focuses on function rather than credentials or specialized knowledge. It also leads to renewed appreciation for the duties of ordinary citizens to contribute to the common good during times of crisis. Seeing their role in civic practice would lead one to include administrators, food services personnel, and radiology technicians in the expanded social contract, but this would obviously call for a matching, broadened conception of the societal quid pro quo. Thus, in addition to the benefits of licensure, professional autonomy, and social esteem meted out to physicians, the equivalent of “battle pay,” compensation for injury or death, and some appropriate form of public recognition could be envisioned for nonprofessional staffers.
Moreover, civic practice opens up the idea that threats posed to the social fabric on the order of SARS or pandemic influenza should engage the moral sensibilities not just of health professionals, but also of ordinary citizens who happen to serve as office workers and orderlies in hospitals and clinics. To subdue such threats to society, it could be argued that every member of the community must contribute what she or he can to the common effort; every oar must be in the water. Here, too, in order to avoid placing an undue burden on those members of the community who, because of their placement within the medical and public health infrastructures, face greater than average risks, public health planners would need to think of appropriate ways of honoring them and compensating them for their sacrifices.
What, then, does society owe to health workers? The notion of emergency preparedness as a civic practice—a broadened social contract—applies strongly to health workers, professionals and nonprofessionals alike. If health workers are willing to serve the needs of others and to face considerable risk in the line of duty, then society has a duty, especially in the context of an emergency, to provide them with the information and infection control measures and the protections and tools [training, equipment, supplies, security] they need to subdue the epidemic or blunt the effects of natural disasters. They should be supported both by society at large and government at all levels and also by local communities and health care institutions or other corporations that employ them. During the SARS outbreak, some of the physicians in China who refused to return to their hospitals did so precisely because they were outraged at what they perceived to be the government’s ineptitude in handling the early stages of the epidemic and because they were afraid to engage with this mysterious new and lethal disease without adequate infection control protections [Brookes, 2005; Person et al., 2004].
Finally, there is a societal obligation associated with emergency preparedness to create and maintain an adequate infrastructure for public health. The focus here is systemic, not individual; it does not fall exclusively or even primarily on the virtues or expected sacrifices of individual health workers, but rather on our collective responsibility to provide and maintain an infrastructure conducive to their safety and the success of emergency preparedness and to routine, everyday public health. A well-funded and thoughtfully designed public health infrastructure is by far the best way for society to meet the wide array of currently unforeseeable threats and future emergencies. Narrowly targeted stockpiles and response plans for specific threats [e.g., hurricanes, anthrax, pandemic influenza] no doubt have their place; but they will most likely fail to achieve their objectives in the absence of a sound system of public health [see Chapter 2].
Society’s ethical responsibility to health workers extends beyond material resources into the domain of social recognition, meaning, and self-esteem. There should be appropriate forms of social recognition for the sacrifices made by health workers. At a minimum, health workers should not be socially shunned, as many were during the Toronto SARS crisis. [Once it became known that health workers were transmitting that deadly disease, they were often shunned by the general public as potential carriers. Nurses in Toronto’s hospitals reported that taxi drivers often refused to take them home from work.] More importantly, perhaps, society should strive to provide needed care to all health workers who become ill or disabled in the line of duty and to provide compensation to their families should they die [Huber & Wynia, 2004].
Now we come to the difficult question of how much risk health workers are morally and professionally obligated to accept in the context of a health emergency. Before discussing this question directly, two preliminary points should be noted.
First, any adequate accounting of the obligations borne by health care and public health professionals must acknowledge and take seriously the full complexity of their moral situation. The moral challenge here stems not simply from a potential conflict between professional duty and individuals’ interest in avoiding serious morbidity and mortality, but also from health workers’ competing moral obligations to their spouses or partners and children who depend on their support. This is not merely a question of self-centeredness but of divided ethical loyalties. It is not simply a test of moral will between self-interest and duty, where the right answer may be clear but difficult to follow. It is a genuine moral dilemma between competing moral obligations. In many cases, health workers might fear becoming ill and losing the ability to provide for their families; in others, they may be tempted to stay home in order to provide much-needed care to their own family members already stricken by disease or natural disaster [see Chapter 5].
Moreover, different sorts of disaster pose different levels of risk to health workers. A bioterrorist attack with chemicals or pathogens, for example, engenders widespread fear and panic in the general population, and especially in those living and working in close proximity to the event, but it does not ordinarily place health professionals working after the fact in a controlled environment at greatly increased personal risk. A major hurricane may not expose health workers to especially high levels of personal physical danger, but the psychosocial risks of working in such stressful conditions might pose a serious threat to their mental health [Tracy, 2007]. [It is interesting to note that both Katrina and Sandy caused flooding and disruption of major hospitals and many nursing facilities. The siting, architecture, and construction design of health facilities is itself an element of emergency preparedness and future planning.] In certain extreme circumstances, such as the recent SARS epidemic or a predicted pandemic influenza crisis, health workers face very high risks of serious morbidity and mortality.
Unlike many infectious diseases, such as AIDS, which can be transmitted from person to person in the absence of symptoms, SARS became highly communicable only after patients had become sufficiently sick to become hospitalized. As a result, hospitals became places of infection and death, and many physicians and nurses died caring for SARS patients. Although the mortality rate for SARS worldwide hovered at the alarming average rate of 15%, health workers constituted a disturbingly large percentage of its victims at epicenters in Hong Kong [25%], Vietnam [100%], and Canada [65%]. Those who did not become ill were nevertheless often quarantined in their hospitals for long periods of time, and many of these suffered greatly from the effects of isolation, including depression. Perhaps the most noteworthy thing about the SARS epidemic is that so many health workers showed up for work despite the alarming risks and the mysterious nature of the disease [Emanuel, 2003].
What, then, is the ethical answer to our third question? Medicine, nursing, and public health are inherently risky professions to some extent and always have been. Prior to heated debates over physicians’ duty to treat HIV-infected patients during the late 1980s, health workers routinely treated, for example, psychiatry patients with violent tendencies and patients on tuberculosis wards. Indeed, one commentator argued at that time that physicians had a duty to treat AIDS patients because they had already accepted a certain level of risk by virtue of becoming physicians [Daniels, 1991]. Since the risks posed by HIV were not significantly greater for physicians practicing adequate infection control than the background risks inherent in medical practice, the argument went that contemporary physicians can be assumed to have implicitly consented to treat patients with HIV.
On the other hand, no credible morality of medicine, nursing, or public health would impose a duty of martyrdom. Did Russian physicians have a duty to lower themselves by helicopter into the Chernobyl nuclear reactor to treat technicians exposed to fatal doses of radiation? In those desperate hours after the containment structure was breached, many workers and emergency responders, such as those shoveling debris and helicopter pilots trying to extinguish fires, did expose themselves knowingly to lethal radiation in order to contain the leakage and save lives. But, surely, in cases such as this, marked by extremely high levels of risk and inadequate protection, health workers do not have a moral or professional duty to treat. The public can always hope for heroic deeds, for health workers giving the last full measure of devotion, but it cannot expect or demand these things of doctors, nurses, or public health workers. Nor should health workers be expected to plunge into the fray without first having in place appropriate training, resources, protective equipment, and follow-up support to help perform their job safely. It is the duty of society at large [and health care institutions] to provide these resources. This is true in part because such workers have a duty to keep themselves healthy so that they can continue to treat others. Again, the provision of a robust public health infrastructure, including adequate personal protective equipment for health workers, not exhortations to heroism, should be the primary focus of emergency preparedness [Antares Foundation, 2006].
However, after acknowledging these points, the truly hard cases remain. Were the health workers who fell ill or died while caring for SARS patients just doing their duty, or did they transcend the call of duty into the realm of heroism, wherein we can be grateful to those who stood their ground but cannot criticize or condemn those who fled? Several commentators have pointed out that the remarkable thing about the SARS epidemic was the steadfastness of health professionals in the face of palpable and serious risk. The medical profession dithered, not to its credit, over its obligations to treat HIV-infected patients during the 1980s and 1990s [Arras, 1988]. But physicians and other health workers by and large rose to the much more daunting challenge posed by SARS. It takes genuine courage for health workers to stand their ground in emergencies, and it is fitting and proper that they be honored for it. Students of nursing, medicine, and public health should be taught their names and told their stories.
Finally, the notion of professional duty should not be expected to do all the moral heavy lifting in this controversy. Health care and public health professionals have serious moral duties to serve the public good, even at reasonable risk to their life and health. However, society would be remiss if it concentrated solely on such duties to the exclusion of offering various incentives for altruistic behavior, especially when the level of risk begins to rise beyond the level of duty. In past epidemics, for example, cities have bestowed additional privileges or remuneration on “plague doctors” who stood their ground instead of fleeing, or bestowed licensure or guild privileges on practitioners who may not have been deemed eligible previously [Arras, 1988]. Again, the most basic foundation for health professionals to answer an extraordinary call of duty is to ensure that institutional support and resources are in place, including, as mentioned earlier, appropriate training, resources, protective equipment, and follow-up support to help health personnel perform their job safely. Additional support to ensure that the health care workforce responds in an emergency might include such things as increased pay; the reliable backup of specialized hospital units well stocked with highly skilled practitioners, technology, and medications; giving first-responders high priority in the distribution of scarce vaccines and prophylactic medications; and special supports for ill family members. If health care and public health professionals can be reassured that their ill family members will be properly cared for, their moral dilemma will be attenuated, which will make it easier for them to assume their proper posts at the barricades.
Civic Obligations and Personal Responsibility
Albert Camus wrote, “What’s true of all the evils in the world is true of the plague as well. It helps men to rise above themselves” [Camus, 1991]. And indeed, one important dimension of emergency preparedness is to foster a sense of civic obligation and a concern for the well-being of the community as a whole on the part of all citizens and community residents. A closely related goal is to prepare individuals and families to understand what their responsibilities will be during an emergency and to equip them with information and possibly other resources to react appropriately and responsibly at such a time. These goals are both ethical and practical. The discussion in this section relates to the ethical goal of promoting personal and civic responsibility, but it also relates to the goal of developing resilient and just, as well as safe communities. Public health professionals and other leaders should use the planning process to strengthen the social capital of communities and to make them more resilient so that they can weather all hazards and emergencies—which are now inevitable throughout the globe and no community is immune from them—with as little damage as possible and bounce back from emergencies quickly and return to civic health [Barbee, 2007; Erikson, 1976, 1994; Paton & Johnston, 2006; Vale & Campanella, 2005].
Here, we return to the distinction we have drawn between the civic and the consumerist models of emergency preparedness. Recall that, through the lens of the consumer model, emergency planning is rather like medical or financial planning. Providers with specialized knowledge are preparing a product for clients who are using that product to promote their own interests as consumers. From a civic perspective, emergency planning is not a commodity to be exchanged between a consumer with an interest and a provider with the expertise to fulfill that interest. It is a public function, a part of the basic purpose of forming a political community in the first place: the security, life, liberty, and well-being of the people as a whole [Benjamin, 2006]. It is not the property of those who create it; it is not simply “used” by those who benefit from it. It is an expression of the entire community about the value of the lives and health of its members [Honig, 2009]. It is a covenant of public trust, an agreement to be entered into by all that establishes commitments of responsibility for each.
Moreover, a growing body of public health and epidemiologic research is demonstrating that the health status of individuals is not merely a function of their genetic makeup, their biological functioning, and the toxic substances or microorganisms they are exposed to in their physical and biological environment. Physical health, to say nothing of mental health and psychological well-being, is affected by the sociocultural environment [Berkman & Kawachi, 2000; Daniels, Kennedy, & Kawachi, 1999; Evans, Marer, & Marmor, 1994; Frumkin et al., 2004; Marmot, 2004; Putnam, 2000; Wilkinson, 1996; Wilkinson & Pickett, 2009]. Everyday health risk factors associated with the breakdown or absence of civic resources [so-called social capital] are also risk factors pertinent to what will happen during emergency situations. The capacity of individuals to respond and the capacity of communities to respond are interrelated. Each factor separately, as well their complex [if still poorly understood] interrelationship, should be of central interest and concern to the emergency planner.
Fostering Civic and Personal Responsibility
The fact that emergency preparedness is primarily a societal and a governmental responsibility does not obviate the fact that there are significant moral obligations incumbent on private citizens as well. The previous section addressed the special obligations attendant on the role of “professionals” in society, in particular health professionals. This section views each person in his or her dual identity as democratic citizen and as a private moral agent. By “citizen,” we mean not so much a legal status, but the ethical and social role of being a responsible member of a political community of free and equal persons, a community of reciprocal rights and obligations, a community of shared vulnerability and risk, and a community of mutual concern and respect. By viewing persons as private “moral agents,” we bring to the foreground their personal, as distinct from their civic, lives: that is, their web of familial and kinship relationships, friendships, and personal associations.
Earlier, we discussed the importance of building active voice and involvement for citizens in the planning process. Doing this is supported by considerations of rights and respect, ensuring justice and nondiscrimination, and making an emergency plan more intelligent and effective by tapping into the kinds of local knowledge that experts may overlook. An added dimension of this process is that undertaking planning and the other activities that mitigate community vulnerability to hazards and that strengthen the community’s resilience will engage people in ways that renew or strengthen their own sense of civic responsibility and membership [Barbee, 2007]. It may also reinforce the health of those organizations of neighborhood and civil society that make up the infrastructure of civic life and are integral to the ability to recover from disaster and dislocation [Hoffman & Oliver-Smith, 2002; Pelling, 2003; Savitch, 2008].
An example of this was demonstrated in the village of Shang-An in Taiwan. In 2001, Taiwan, a country prone to recurrent public health and weather-related emergency events, began efforts to improve the country’s emergency response capability and to explore ways in which people at the grassroots level can be integrated into the preparedness and planning process. In Shang-An, public engagement activities demonstrated how “street science” can be used as residents shared their knowledge of local ecology, terrain, and other conditions. They became a part of a kind of surveillance and early warning system. They also formed effective community organizations to take an active role in problem-solving and in undertaking hazard mitigation and emergency management tasks [Chen, Lui, & Chan, 2006].
Having the opportunity to take part in such local, community-based public health functions has an educational effect on citizens and helps to promote greater scientific and health literacy. This in turn spills over the line between peoples’ sense of communal membership and civic responsibility as citizens and their sense of responsibility for the health and safety of themselves and their families as moral agents [Schafer et al., 2008]. By taking part in emergency preparedness and hazard mitigation efforts, a person can bring closer together the civic and the personal realms of his or her life and conscience. Not only will vulnerability to various public health hazards be thereby mitigated, but so too will the radical privatization and the alienation from the civic realm that so many who “bowl alone” in America now apparently feel.13 When large numbers of volunteers show up at an emergency site to help, we may always admire their expression of solidarity and mutual concern, but we need not forever be astounded by it [Solnit, 2009].
We believe that a sense of citizen obligations, concern for the common good, and a sense of personal and familial responsibility generally reinforce one another. However, there may be times when a conflict of obligations seems to arise. Certainly, most compelling moral obligations during a time of threat or crisis are those obligations of moral agency that pertain to a person’s role as parent, spouse, relative, or friend. And, of course, private individuals have rights and duties that pertain to themselves, in particular, the right to self-preservation.
Here, we address such conflicts between civic and the personal duties: how to prevent, avoid, and mitigate them as much as possible through the pre-event planning process and, if they do arise, how to think through and resolve them.
Emergency Preparedness and Private Dilemmas
It is important not to carry the notion of fusion of public and private, civic responsibility and personal responsibility too far. When this is done, communal conformity can eclipse individuality, privacy, and the liberty that leads to diversity. Ethical conflicts and dilemmas will undoubtedly arise in the context of emergency preparedness. Plans tell people how to behave in the face of impending danger, but people ultimately have to take responsibility for how prudently and responsibly they act to protect themselves and their families. Private moral agency and personal responsibility wrestle with scarcities of various kinds, and these scarcities become dramatic in the emergency preparedness context.
Everyone should be informed about steps they can take to prepare for an emergency and what to do to find shelter, to evacuate, or to locate medical care. Much information regarding these things is now available, although some reports suggest that it is being conveyed in ways that are not sensitive to ethnic or class differences [Falkheimer & Heide, 2006; James et al., 2007]. It is not obvious, for example, that prudence and private moral responsibility dictate that more immediate needs [rent, children’s clothing, education] should be forgone so that one can stock up a 90-day supply of canned goods. Public health emergency planning should assume a measure of self-protection and personal responsibility on the part of ordinary people, and it should give them the information they need to make informed choices. However, emergency planning must also accommodate the reality of limited choices and resources that many people confront in their normal lives, for these will constrain them before, during, and after an emergency as well. Emergency preparedness plans should not take for granted or require undue burden or self-sacrifice. A just society will provide adequate social provision so that mothers and fathers will be able to make prudent individual provision for the health and safety of their family without making tragic tradeoffs [Powers & Faden, 2006].
No one can be in two places at the same time, and physical presence can take on an importance in times of crisis that it does not in everyday life. What do we say about the man who was in his office when the plane hit Tower 1 of the World Trade Center and who decided to search the floor for survivors rather than go immediately to the stairway to escape and protect himself? What does one say to his wife and children? Perhaps he had a special task in case of fire in the evacuation plan that his agency had prepared some time ago. Should he—or should anyone—have accepted that role and that responsibility? Yet if no one does, if no one should, how can there ever be any emergency plan?
Recommendations on Ethical Emergency Planning
When considering particular aspects of an emergency plan or policies that will govern the response to emergency situations, public health officials and other stakeholders can be realistically guided by well-established aspects of sound ethical analysis and decision making [Kass, 2001, 2004, 2005]. They can also be guided by the civic values and goals of preparedness planning and of public health generally. The purpose of giving this attention to ethics is to make emergency preparedness planners alert to a broad range of values, keep them attentive to the types of factual information that bear on ethical decisions or value judgments, and encourage them to remain flexible and open to diverse points of view while still confident and decisive enough in their judgments to meet the challenges of advance planning and emergency response situations.
To supplement the recommendations made elsewhere in the literature of public health ethics and in other chapters in this volume, we propose that ethically responsible public health planners adopt the following practices:
1.
Be clear about the goals of a proposed emergency response intervention or mitigation.14 Identify its goals and ascertain that these goals are consonant with the widely accepted goals and objectives of the public health profession. For example, a proposed emergency response that gives priority to protection of property over protection of human life and health should be subject to special scrutiny and would require special justification. This is a stark example, but it is not entirely hypothetical. As was observed in New Orleans in the aftermath of Hurricane Katrina and massive flooding, officials were so concerned about looting that they devoted scarce financial and manpower resources to law enforcement and security activities while rescue, evacuation, and other health measures were being inadequately supported.
2.
Be sure that a proposed emergency response intervention is based on the most reliable factual information that is reasonably available to decision-makers under the circumstances. Identify and assess the available factual information. In making this assessment, planners should be careful to weigh the evidence indicating that the proposed emergency response will be effective in attaining its goals. They also should not jump to conclusions or fail to consider a range of alternatives. Emergency public health planning will always have to wrestle with the reliability, the completeness, and the timeliness of the information available to it. There is no such thing as perfect information, but that does not mean that decision-makers do not have a responsibility to use the best information they have. Arbitrary and ill-informed decisions are not ethically acceptable, even in emergency situations.
3.
Be aware of the ethical values that are affected [promoted or undermined] by the proposed emergency response and by the ways in which it is carried out. Values may be defined as those states of affairs that promote human flourishing. Almost by definition, public health will promote the values of human life, safety, and health. However, emergency response activities encroach into an ethical domain that is broader than specific public health values alone. Therefore, in an ethical assessment of a proposed emergency response, it is important to be aware of values concerning liberty, justice and equality, dignity, respect, responsible stewardship of scarce resources, transparency and accountability, maintaining public trust, and professional integrity [Thomas, Sage, Dillenberg, & Guillory, 2002].
When planners take ethical values seriously they ask the following kinds of questions:
•
How can the plan best achieve public health effectiveness with minimal coercion?
•
Among available alternatives, which emergency response is most efficient?
•
Which alternative is the least harmful and burdensome?
•
Are important individual rights or interests going to be sacrificed for health and safety?
•
Will the emergency response have effects that are fair and equitable; in other words, will the benefits and burdens caused by the planned emergency response be distributed justly across the affected population?
•
Can the emergency response be implemented in a respectful and nondiscriminatory fashion?
4.
Be concrete rather than abstract in ethical thinking; put a face on the individuals and groups who will be most directly affected by a proposed emergency response intervention. One way to do this is to perform an assessment that will identify the “stakeholders” in a decision. Stakeholders may be defined as those whose rights or interests are significantly affected by a decision. Special efforts should be made to include and to consider the interests of vulnerable or marginalized stakeholders who may not have the power to influence the decision unless special provision is made to ensure their participation. For example, stakeholder assessment asks: Who will benefit from the proposed emergency response? Who will be burdened by it? Who should have a voice in making the decision?
5.
Be aware that the process of decision-making leading up to the selection of an emergency response can raise important ethical considerations in its own right. Many times, people are so focused on content [what is to be decided] that they do not become self-consciously analytic and critical about process [how it is to be decided]. But it is ethically important to consider the process for making the decision and the values that pertain to the process—participation, inclusiveness, public and open deliberation, fair hearings, adequate technical support and expertise. It is also important for emergency preparedness planners to consider the institutional properties of the decision-making process itself: it should be designed with checks and balances, redundancy, feedback loops for learning from mistakes and for making mid-course corrections, and an appeals process to review decisions that come under challenge. The types of questions that should be asked are: Is the decision-making process fairly representative and inclusive? Is it open and transparent? Is it intelligently responsive: that is, does the implementation process include the capacity to monitor and evaluate progress and to learn from mistakes or unanticipated consequences?
6.
Take steps to enable careful evaluation of the emergency response later. How will public health planners know if an emergency response is successful, has met its goals, has been implemented ethically, and has had good ethical effects? This brings the process full circle, since having clearly defined and stated goals at the outset is a prerequisite for proper evaluation later on. For example, ask such questions as: What are our criteria of evaluation? Are data being gathered or records being kept such that it will be possible to conduct an evaluation and assessment of the emergency response later?
7.
Be aware of and resist unwarranted urgency in implementing an emergency response. Consider the timing of the emergency response in an analytic way. Avoid the exaggeration of risk and worst-case scenarios. Resist precipitous action. This is particularly important if one feels that the ethical analysis of a proposed emergency response is inadequate or incomplete. Of course, excessive caution, weak resolve, and procrastination are undesirable and often harmful as well. Leaders and decision-makers have difficult judgments to make, and what is needed is perhaps the ethical equivalent of “due diligence.” For example, ask questions such as the following: Why exactly does this decision have to be made immediately? Is there time for the collection of additional information or data without taking undue risk? Is there time for broader community consultation before a final decision has to be made, particularly if very difficult and consequential ethical decisions have to be made?
Conclusion
Emergency preparedness is a vital public health function. As such, it is both a governmental responsibility and a civic endeavor. This chapter has presented a broad overview of its subject, as opposed to a focused look at one aspect of emergency preparedness, such as the response to pandemic influenza, bioterrorism, or weather-related emergencies. The purpose of this chapter has been to provide an ethically orientating perspective on emergency preparedness understood as a complex practice or activity with intrinsic values and standards of competency. Society needs such an orientation and a rich, ethical vocabulary, capable of expressing nuance, pluralism, and a commitment to responsible democratic citizenship and the common good.
We believe that there is considerable value in providing resources for ongoing, serious conversation and deliberation about ethics. There is much that is not yet understood about how to do emergency planning and preparedness well. The epidemiologic, clinical, and behavioral sciences are still on a learning curve in the field. Likewise, there is still much to be learned about the ethics of what Elaine Scarry [2011] calls, “thinking in emergencies.”
Emergency preparedness is ultimately not only about protecting a population. It is also about sustaining and building or rebuilding civic community and strengthening it. Successful emergency planning must rely on and tap into a preexisting fund of civic responsibility, a sense of justice, and concern for others in need. Emergency planning can and should be an occasion to foster these outlooks and impulses as well. Fear and self-interest will no doubt be strongly in evidence during any public health emergency, but public health leadership, in conjunction with elected officials and other community leaders, can move communities beyond these motivations to a sense of common purpose and solidarity. If it does this, public health emergency preparedness and response will succeed in meeting its ethical obligations and will most likely succeed in its practical efforts as well.
Notes
2.
The paradigm of emergency preparedness that provides the most latitude for achieving high ethical standards and ideals is a broad social model of emergency planning. It brings public health into contact with similarly oriented perspectives and movements in cognate fields. It draws orientation from social epidemiology and “place-based” [ecosystem landscape and built environment] public health, community-based participatory research, deliberative planning, and the building of “learning communities” and “learning organizations” in management and leadership science [Forester, 1999; Schön & Rein, 1997]. It may even have an analogue in law enforcement and criminal justice theories of community policing [Friedmann & Cannon, 2007].
3.
What is the conceptual import of the concept of “resilience,” and what are its implications for public health preparedness? A resilient community is not simply one that is able to “bounce back” or “rebound” to the status quo ante. This is the sense of resilience prevalent in psychology and medicine. However, in ecology and related fields, resilience is the capacity of a [natural or social] system to absorb external disturbances without losing its essential continuity and coherence [Adger, 2000; Gunderson & Holling, 2002; Walker & Salt, 2006]. Building the second conception of resilience capacity into public health emergency planning opens up new possibilities for linking the underlying vitality and integrity of communities and systems of social capital with the concepts of “preparedness” and “security.” As we use the term here, resilience is the capacity of a community [and of the individuals who comprise it] to respond creatively, preventatively, and proactively to change or extreme events, thus mitigating crisis or disaster. In the emergency preparedness context, we focus especially on the social or community dimension of the concept. Social resilience is defined by Adger as “the ability of groups or communities to cope with external stresses and disturbances as a result of social, political and environmental change. This definition highlights social resilience in relation to the concept of ecological resilience which is a characteristic of ecosystems to maintain themselves in the face of disturbance” [Adger, 2000]. Resilient communities have robust internal support systems and networks of mutual assistance and solidarity. They also maintain sustainable and risk mitigating relationships with their local ecosystems and their natural environment [Middaugh, 2008; Walker & Salt, 2006]. Public health professionals and other leaders should use the preparedness planning process to empower communities by strengthening their social capital and to make them more resilient, so that they can weather all hazards and emergencies—which are now inevitable throughout the globe and no community is immune from them—with as little damage as possible, recover from disasters effectively, and return to civic health.
4.
Berlin then continues: “To threaten a man with persecution unless he submits to a life in which he exercises no choices of his goals; to block before him every door but one, no matter how noble the prospect upon which it opens, or how benevolent the motives of those who arrange this, is to sin against the truth that he is a man, a being with a life of his own to live … I wish to be the instrument of my own, not of other men’s, acts of will. I wish to be a subject, not an object; to be moved by reasons, by conscious purposes, which are my own, not by causes which affect me, as it were, from outside” [Berlin, 1969, p. 127].
5.
Here, we follow the standard meaning of this term in economics, where the “opportunity cost” of any given public expenditure, x, is the value of those alternative opportunities society must forgo because of a decision to spend money on x rather than on those other things.
7.
For an analogous example of this kind of thinking, one prominent public official has opined that, in the context of the post-9/11 world, “if there’s a one percent chance that Pakistani scientists are helping al Qaeda build or develop a nuclear weapon, we have to treat it as a certainty in terms of our response” [Sunstein, 2007].
8.
The Maginot Line was a chain of defensive fortifications built by France on its eastern border between World War I and World War II. It was designed to stop any future invasion by Germany; in World War II, the Germans conquered France by going around the Maginot Line to the north.
9.
Generally speaking, during evacuation events, recalcitrant adults are permitted to make their own decisions to leave or to remain in place. If it is a toxic gas release, and an immediate threat to life was in the balance, perhaps no one would choose to stay, thus making coercive removal unnecessary; or, arguably, the imminent threat to life would more easily justify paternalistic coercion and forcible removal. Yet another dimension of complexity arises in the case of minor or incompetent adults. Should parents or guardians have the right to endanger such persons by refusing evacuation? Moreover, one’s intuitions and judgments may vary as one considers infectious disease events and social distancing measures rather than evaluation events. This suggests that the specific context and circumstances matter in emergency preparedness ethics. Nonetheless, more research is needed on circumstances involving harm to children and other dependents, and clearer standards on the limits of parental and guardian authority would be helpful. Here, public health ethics and public health law overlap and might well work in collaboration to develop such standards.
10.
There is some disagreement about the definition of the term “transparency.” For some, open meeting and open records requirements are sufficient to provide transparency in the operation of some decision-making body. We understand transparency to require at least some measure of justification and explanation: not just telling people after the fact what has been decided but attempting to explain why it has been decided. Transparency also requires that the public be provided with the necessary education, background information, and resources to intelligently assess what they are being told and what has been decided or proposed.
11.
Current information concerning the Model Act and state legislative activity pertaining to it can be found on the website of the Johns Hopkins University and Georgetown University Centers for Law and the Public’s Health at //www.publichealthlaw.net/ModelLaws/MSEHPA.php.
12.
The metaphor of a ladder of intervention is used by the Nuffield Council on Bioethics [2007] to convey the sequence of public health measures from the least to the most restrictive of individual liberty.
13.
The phrase refers to a study by the sociologist Robert Putnam [2000] of the decline of civic engagement in America, including declining participation in social bowling leagues.
14.
When we refer to “proposed” emergency responses or interventions, we certainly intend to suggest that ethical assessment should take place prior to making a decision or carrying out an emergency preparedness policy or response. But this does not preclude the important role of ethical analysis as an ongoing part of the entire emergency preparedness cycle. Ethical considerations can help to make mid-course corrections during the hours, days, or weeks of the response phase. Ethical considerations can also be helpful retrospectively so that emergency preparedness can learn from past mistakes and improve over time.
References
Adger, W. N. [
2000
].
Social and ecological resilience: Are they related?
Progress in Human Geography
, 24, 347–64.
Agamben, G. [
2005
].
State of exception [translated by Kevin Attell].
Chicago: University of Chicago Press.
Altevogt, B. M., Stroud, C., Nadig, L., & Hougan, M [Rapporteurs]. [2010]. Medical surge capacity: Workshop summary. Institute of Medicine Forum on Medical and Public Health Preparedness for Catastrophic Events, Board on Health Sciences Policy. Washington, DC: National Academies Press. Available at //www.nap.edu/download.php?record_id=12798.
Annas, G. J. [
2002
].
Bioterrorism, public health, and civil liberties.
New England Journal of Medicine
, 346, 1337–1342.
Antares Foundation. [
2006
].
Managing stress in humanitarian workers: Guidelines for good practice.
Amsterdam, Netherlands: Author.
Arras, J. D. [
1988
].
The fragile web of responsibility: AIDS and the duty to treat.
Hastings Center Report
, 18, 10–20.
Arras, J. D. [
2006
].
Rationing vaccine during an avian influenza pandemic: Why it won’t be easy.
Yale Journal of Biology and Medicine
, 78, 287–300.
Baker, R. B., Caplan, A. L., & Latham, S. [
1999
].
The American medical ethics revolution: How the AMA’s code of ethics has transformed physicians’ relationships to patients, professionals and society.
Baltimore, M. D.: John Hopkins University Press.
Barbee, D. [
2007
].
Disaster response and recovery: Strategies and tactics for resilience.
Journal of Homeland Security and Emergency Management
, 4[1], ISSN [Online] 1547-7355, DOI: 10.2202/1547-7355.1323, March.
Barnes M. D., Novilla, L. M. B., Meacham, A. T., McIntyre, E., & Erickson, B. C. [
2008
].
Analysis of media agenda setting during and after Hurricane Katrina: Implications for emergency preparedness, disaster response, and disaster policy.
American Journal of Public Health
, 98, 604–610.
Battin, P. P., Francis, L. P., Jacobson, J. A., & Smith, C. B. [
2009
].
The patient as victim and vector: Ethics and infectious disease.
New York: Oxford University Press.
Bayer, R., & Fairchild, A. L. [
2004
].
The genesis of public health ethics.
Bioethics
, 18, 473–492.
Benjamin, C. G. [
2006
].
Putting the public in public health: New approaches.
Health Affairs
, 25, 1040–1043.
Berkman L. F., & Kawachi, I. [
2000
].
Social epidemiology
. Oxford: Oxford University Press.
Berlin, I. [
1969
].
Four essays on liberty
. Oxford: Oxford University Press.
Bodenheimer, T. [
1997
].
The Oregon health plan—Lessons for the nation.
New England Journal of Medicine
, 337, 651–656.
Brock, D. [
2004
]. Ethical issues in the use of cost effectiveness analysis for the prioritization of health care resources. In S. Anand, A. Peter, & A. Sen [Eds.],
Public health, ethics and equity
[pp. 201–223]. Oxford: Oxford University Press.
Bröckling, U., Krasmann, S., & Lemke, T. [Eds.]. [
2010
].
Govermentality: Current issues and future challenges.
New York: Routledge.
Brookes, T. J. & Kahn, O. A. [
2005
].
Behind the mask: How the world survived SARS.
Washington, DC: American Public Health Association.
Buchanan, D. R. [
2000
].
An ethic for health promotion: Rethinking the sources of human well-being
. New York: Oxford University Press.
Bytheway, B. [2006]. The evacuation of older people: The case of Hurricane Katrina. In Understanding Katrina: Perspectives from the social sciences. Social Science Research Council. Available at //understandingkatrina.ssrc.org/Bytheway/.
Calabresi, G., & Bobbitt, P. [
1978
].
Tragic choices.
New York: W. W. Norton.
Campion, E. W. [
1999
].
Liberty and the control of tuberculosis.
New England Journal of Medicine
, 340, 385–386.
Camus, A. [
1991
].
The plague
. New York: Vintage Books.
Carter-Pokras, O., Zambrana R. E., Mora S. E., & Aaby K. A. [
2007
].
Emergency preparedness: Knowledge and perceptions of Latin American immigrants.
Journal of the Poor and Underserved
, 18, 465–481.
Chambers, S. [
2003
].
Deliberative democratic theory.
Annual Review of Political Science
, 6, 307–318.
Chen, L. C., Lui Y. C., & Chan K. C. [
2006
].
Integrated community-based disaster management program in Taiwan: A case study of Shang-An Village.
Journal of Natural Hazards
, 37, 209–223.
Childress J. F., & Bernheim R. G. [
2003
].
Beyond the liberal and communitarian impasse: A framework and vision for public health.
Florida Law Review
, 55[5], 1191–1231.
Conly, S. [
2013
].
Against autonomy: Justifying coercive paternalism.
Cambridge: Cambridge University Press.
Cooper, C., & Block, R. [
2006
].
Disaster: Hurricane Katrina and the failure of homeland security.
New York: Times Books.
Corburn, J. [
2005
].
Community knowledge and environmental health justice
. Cambridge, MA: MIT Press.
Daniels, N. [
1991
].
Duty to treat or right to refuse?
Hastings Center Report
, 21, 36–46.
Daniels, N., Kennedy, B. P., & Kawachi, I. [
1999
].
Why justice is good for our health: The social determinants of health inequalities.
Daedalus
, 128, 215–51.
Daniels, N., Kettl, D. F., & Kunreuther, H. [
2006
].
On risk and disaster: Lessons from Hurricane Katrina
. Philadelphia, PA: University of Philadelphia Press.
Daniels, N., & Sabin, J. [
2002
].
Setting limits fairly
. Oxford: Oxford University Press.
Davis, E., & Mincin, J. [
2006
].
Incorporating special needs populations into emergency planning and exercises. Nobody left behind: Disaster preparedness for persons with mobility impairment.
Lawrence: University of Kansas, Research and Training Center on Independent Living.
DeBruin, D. A., Parilla, E., Liaschenko, J., Marshall, M. F., Leider J. P., Brunnquell, D., … Vawter, D. E. [
2010
].
Implementing ethical frameworks for rationing scarce health resources in Minnesota during severe influenza pandemic
. Minneapolis: University of Minnesota Center for Bioethics and Minnesota Center for Health Care Ethics.
Drexel University Center for Health Equality. [
2008
].
National consensus statement on integrating racially and ethnically diverse communities into public health emergency preparedness
. Washington, DC: US Department of Health and Human Services, Office of Minority Health.
Dworkin, R. [
1993
].
Life’s dominion
. New York: Knopf.
Elder, K. A., Xirasagar, S., Miller, N., Bowen, S. A., Glover, S., & Piper, C. [
2007
].
African Americans’ decisions not to evacuate New Orleans before Hurricane Katrina: A qualitative study.
American Public Health Association
, 97[Suppl 1], S124–S129.
Emanuel, E. J. [
2003
].
The lessons of SARS.
Annals of Internal Medicine
, 139, 589–591.
Erikson, K. T. [
1976
].
Everything in its path: Destruction of community in the Buffalo Creek flood
. New York: Simon and Schuster.
Erikson, K. T. [
1994
].
A new species of trouble: The human experience of modern disasters
. New York: W. W. Norton.
Evans, R. G., Marer, M. L., & Marmor, T. R. [
1994
].
Why are some people healthy and others not?
New York: Aldine de Gruyter.
Fain, B., Viswanathan, K., & Altevogt, B. M. [Rapporteurs]. [2012]. Public engagement on facilitating access to antiviral medications and information in an influenza pandemic: Workshop series summary. Institute of Medicine Forum on Medical and Public Health Preparedness for Catastrophic Events, Board on Health Sciences Policy. Washington, DC: National Academies Press. Available at www.nap.edu/download.php?record_id=13404.
Fairchild, A. L., Colgrove, J., & Jones, M. M. [
2006
].
The challenge of mandatory evacuation: Providing for and deciding for.
Health Affairs
, 25, 958–967.
Falkheimer, J., & Heide, M. [
2006
].
Multicultural crisis communication: Toward a social constructionist perspective.
Journal of Contingencies and Crisis Management
, 14, 180–189.
Fleck, L. M. [
2009
].
Just caring: Health care rationing and democratic deliberation
. New York: Oxford University Press.
Forester, J. [
1999
].
The deliberative practitioner: Encouraging participatory planning processes
. Cambridge, MA: MIT Press.
Frankel, M. S. [
1989
].
Professional codes: Why, how, and with what impact?
Journal of Business Ethics
, 8, 109–115.
Frickel, S. [2006]. Our toxic gumbo: Recipe for a politics of environmental knowledge. In Understanding Katrina: Perspectives from the social sciences. Social Science Research Council. Available at //understandingkatrina.ssrc.org/Frickel/.
Friedman, A. [
2008
].
Beyond accountability for reasonableness.
Bioethics
, 22, 101–112.
Friedmann, R. R., & Cannon, W. J. [
2007
].
Homeland security and community policing: Competing or complementing public safety policies.
Journal of Homeland Security and Emergency Management
, 4[4], ISSN [Online] 1547-7355, DOI: 10.2202/1547-7355.1371, December 2007.
Frumkin, H., Frank, L., & Jackson, R. [
2004
].
Urban sprawl and public health: Designing, planning, and building for healthy communities
. Washington, DC: Island Press.
Frumkin, H., & McMichael A. J. [
2008
].
Climate change and public health: Thinking, communicating, acting,
American Journal of Preventive Medicine
, 35[5], 403–410.
Fussell, E. [2006]. Leaving New Orleans: Social stratification, networks, and hurricane evacuation. In Understanding Katrina: Perspectives from the social sciences. Social Science Research Council. Available at //understandingkatrina.ssrc.org/Fussell/.
Garrett, J. E., Vawter, D. E., Gervais, K. G., Prehn, A. W., DeBruin, D. A., Livingston, F., … Lynfield, R. [
2011
].
The Minnesota pandemic ethics project: Sequenced, robust public engagement process.
Journal of Participatory Medicine, 3[e6]. Available from: //www.jopm.org/evidence/research/2011/01/19/the-minnesota-pandemic-ethics-project-sequenced-robust-public-engagement-processes/.
Garrett, J. E., Vawter, D. E., Prehn, A. W., DeBruin, D. A., & Gervais K. G. [
2008
].
Ethical considerations in pandemic influenza planning.
Minnesota Medicine
, 91[4], 37–39.
Garrett, J. E., Vawter, D. E., Prehn, A. W., DeBruin, D. A., & Gervais, K. G. [
2009
].
Listen! The value of public engagement in pandemic ethics.
American Journal of Bioethics,
9 [11], 17–19.
Gaylin, W., & Jennings, B. [
2003
].
The perversion of autonomy: Coercion and constraints in a liberal society
[2nd edition]. Washington, DC: Georgetown University Press.
Gilman, N. [2006]. What Katrina teaches about the meaning of racism. In Understanding Katrina: Perspectives from the social sciences. Social Science Research Council. Available at //understandingkatrina.ssrc.org/Gilman/.
Goodin, R. [
1995
].
Utilitarianism as a public philosophy
. New York: Cambridge University Press.
Gostin, L. O. [
2003
].
When terrorism threatens health: how far are limitations on human rights justified?
Florida Law Review
, 55, 1105–1170.
Gostin, L. O., Sapsin, J. W., Teret, S. P., Burris, S., Mair, J. S., Hodge, J. R., Jr., & Vernick, J. S. [
2002
].
The model state emergency health powers act: Planning for and response to bioterrorism and naturally occurring infectious diseases.
Journal of the American Medical Association,
288 , 622.
Gould, S. D., Biddle, A. K., Klipp, G., Hall, C. N., & Danis, M. [
2005
].
Choosing health plans all together: A deliberative exercise for allocating limited health care resources.
Journal of Health Politics, Policy and Law
, 30, 563–601.
Graham, S. [2006]. Cities under siege: Katrina and the politics of metropolitan America. In Understanding Katrina: Perspectives from the social sciences. Social Science Research Council. Available at //understandingkatrina.ssrc.org/Graham/.
Gunderson, L. H., & Holling, C. S. [Eds.] [
2002
].
Panarchy: Understanding transformation in human and natural systems.
Washington: Island Press.
Gutmann, A., & Thompson, D. [
1996
].
Democracy and disagreement
. Cambridge, MA: Harvard University Press.
Hanfling, D., Altevogt, B. M., Viswanathan, K., & Gostin, L. O. [Eds.]. [2012]. Crisis standards of care: A systems framework for catastrophic disaster response. Institute of Medicine, Committee on Guidance for Establishing Crisis Standards of Care for Use in Disaster Situations. Washington, DC: National Academies Press. Available at //www.nap.edu/download.php?record_id=13351.
Hartman, C., & Squires G. D. [
2006
].
There is no such thing as a natural disaster: Race, class, and Hurricane Katrina
. New York: Routledge.
Health Systems Research Inc. [
2005
].
Altered standards of care in mass casualty events
. Report No. 05–0043. Washington, DC: Agency for Healthcare Research and Quality.
Hoffman, S. M., & Oliver-Smith, A. [
2002
].
Catastrophe and culture: The anthropology of disaster.
Santa Fe, NM: School of American Research Press.
Holland, S. [
2007
].
Public health ethics
. Cambridge: Polity Press.
Honig, B. [
2009
].
Emergency politics: Paradox, law, democracy
. Princeton, NJ: Princeton University Press.
Huber, S. J., & Wynia, M. K. [
2004
].
When pestilence prevails: Physician responsibilities in epidemics.
American Journal of Bioethics
, 4, W5–W11.
Institute of Medicine. [
2003
].
The future of the public’s health in the 21st century
. Washington, DC: National Academies Press.
Institute of Medicine. Committee on implementation of antiviral medication strategies for an influenza pandemic. [
2008
].
Antivirals for pandemic influenza: Guidance on developing a distribution and dispensing program.
Washington: National Academies Press.
James, X., Hawkins, A., & Rowel, R. [
2007
].
An assessment of the cultural appropriateness of emergency preparedness communication for low income minorities.
Journal of Homeland Security and Emergency Management
, 4[3], ISSN [Online] 1547-7355, DOI: 10.2202/1547-7355.1266, September 2007.
Jennings, B. [
2003
].
On authority and justification in public health.
Florida Law Review
, 55, 1241–1256.
Jennings, B. [
2007
a]. Community in public health ethics. In R. E. Ashcroft, A. Dawson, H. Draper, & J. McMillan [Eds.],
Principles of health care ethics
. West Sussex: Wiley.
Jennings, B. [
2007
b]. Public health and civic republicanism. In A. Dawson & M. Verweij [Eds.],
Ethics, prevention, and public health
. Oxford: Oxford University Press.
Kailes, J. I. [
2005
b].
Why and how to include people with disabilities in your emergency planning process?
Lawrence: University of Kansas, Research and Training Center on Independent Living.
Kass, N. E. [
2001
].
An ethics framework for public health.
American Journal of Public Health,
91 , 1776–1782.
Kass N. E. [
2004
].
Public health ethics: From foundations and frameworks to justice and global public health.
Journal of Law, Medicine & Ethics,
32 , 232–42.
Kass N. E. [
2005
].
An ethics framework for public health and avian influenza pandemic preparedness.
Yale Journal of Biology and Medicine,
78 , 239–54.
Keystone Center. [
2007
].
Pandemic influenza vaccine prioritization: Public engagement meetings.
Keystone, CO: Author.
King’s Fund. [
2004
].
Public attitudes to public health.
London: The King’s Fund.
Kinlaw, K., Barrett, D. H., & Levine, R. J. [
2009
].
Ethical guidelines in pandemic influenza: Recommendations of the Ethics Subcommittee of the Advisory Committee of the Director, Centers for Disease Control and Prevention.
Disaster Medicine and Public Health Preparedness,
3 [Suppl 2], 1–8.
Knobler, S., Mahmoud, A., Lemon, S., Mack, A., Sivitz, L., & Oberholtzer, K. [Eds.]. [
2004
b].
Learning from SARS: Preparing for the next disease outbreak.
Institute of Medicine, Forum on Microbial Threats, Board on Global Health. Washington, DC: National Academies Press. Available at //www.nap.edu/catalog/10915/learning-from-sars-preparing-for-the-next-disease-outbreak-workshop.
Knobler, S. L., Mack, A., Mahmoud, A., & Lemon, S. M. [Eds.]. [
2004
a].
The threat of pandemic influenza: Are we ready?
Workshop summary. Institute of Medicine Forum on Microbial Threats, Board on Global Health. Washington, DC: National Academies Press. Available at: //www.nap.edu/download.php?record_id=11150.
Krimsky, S., & Golding, D. [Eds.]. [
1992
].
Social theories of risk
. Westport, CT: Praeger.
Langewiesche, W. [
2002
].
American ground: Unbuilding the World Trade Center
. New York: North Point.
Levine, C. [
2004
].
The concept of vulnerability in disaster research.
Journal of Traumatic Stress
, 17, 395–402.
Lukes, S. [2006]. Questions about power: Lessons from the Louisiana hurricane. In Understanding Katrina: Perspectives from the social sciences. Social Science Research Council. Available at //understandingkatrina.ssrc.org/Lukes/.
MacIntyre, A. [
2007
].
After virtue: A study in moral theory
[3rd edition]. South Bend, IN: University of Notre Dame Press.
Marmot, M. [
2004
].
The status syndrome: How social standing affects our health and longevity
. New York: Times Books.
Meslin, E. M., Alyea, J. M., & Helft, P. R. [
2007
].
Pandemic flu preparedness: Ethical issues and recommendations to the Indiana State Department of Health
. Technical advisory document [TAD-05–07]. Indianapolis: Indiana University Center for Bioethics.
Messias, D. K., & Lacy, E. [
2007
].
Katrina-related health concerns of Latino survivors and evacuees.
Journal of Health Care for the Poor and Underserved
, 18, 443–464.
Molotch, H. [2006]. Death on the roof: Race and bureaucratic failure. In Understanding Katrina: Perspectives from the social sciences. Social Science Research Council. Available at //understandingkatrina.ssrc.org/Molotch/.
National Council on Disability. [
2008
].
Saving lives: Including people with disabilities in emergency planning
. Washington, DC: National Press Club.
National Organization on Disability. [
2008
].
Prepare yourself: Disaster readiness tips for people with disabilities
. Washington, DC: National Organization on Disability.
Nuffield Council on Bioethics. [
2007
].
Public health: Ethical issues
. London: Author.
O’Mathúna, D. P., Gordijn, B., & Clarke, M. [Eds.]. [
2014
].
Disaster bioethics: Normative issues when nothing is normal
. Dordrecht: Springer Press.
Parmet, W. E. [
2007
].
Legal power and legal rights. Isolation and quarantine in the case of drug-resistant tuberculosis.
New England Journal of Medicine
, 357, 433–435.
Pastor, M., Bullard, R. D., Boyce, J. K., Fothergill, A., Morello-Frosch, R., & Wright, B. [
2006
].
In the wake of the storm: Environment, disaster and race after Katrina.
New York: Russell Sage Foundation.
Paton, D., & Johnston, D. [
2006
].
Disaster resilience: An integrated approach
. Springfield, IL: Charles C. Thomas.
Pelling, M. [
2003
].
The vulnerability of cities: Natural disasters and social resilience
. Sterling, VA: Earthscan.
Person, B., Sy, F., Holton, K., Govert, B., Liang, A., & NCID/SARS Community Outreach Team [
2004
].
Fear and stigma: The epidemic within the SARS outbreak.
Emerging Infectious Diseases,
10, 359–363.
Powers, M., & Faden, R. [
2006
].
Social justice: The moral foundations of public health and health policy.
Oxford: Oxford University Press.
Prehn, A. W., & Vawter, D. E. [
2008
].
Ethical guidance for rationing scarce health-related resources in a severe influenza pandemic: Literature and plan review
. Minneapolis: Minnesota Center for Health Care Ethics and University of Minnesota Center for Bioethics.
Putnam, R. D. [
2000
].
Bowling alone
. New York: Simon and Schuster.
Reid, L. [
2005
].
Diminishing returns? Risk and the duty to care in the SARS epidemic.
Bioethics
, 19, 353.
Rosner, D., & Markovitz, G. [
2006
].
Are we ready? Public health since 9/11
. Berkeley: University of California Press.
Saunders, G. L., & Monet, T. [
2007
].
Eliminating injustice toward disadvantaged populations during an influenza pandemic.
North Carolina Medical Journal
, 68[1], 46–48.
Savitch, H. V. [
2008
].
Cities in a time of terror: Space, territory, and local resilience
. Armonk, NY: M. E. Sharp.
Scanlon, J. [2006]. Two cities, two evacuations: Some thoughts on moving people out. In Understanding Katrina: Perspectives from the social sciences. Social Science Research Council. Available at //understandingkatrina.ssrc.org/Scanlon/.
Scarry, E. [
2011
].
Thinking in an emergency
. New York: W. W. Norton.
Schafer, W. A., Carroll, J. M., Haynes, S. R., & Abrams, S. [
2008
].
Emergency management planning as collaborative community work.
Journal of Homeland Security and Emergency Management
, 5[1], ISSN [Online] 1547-7355, DOI: 10.2202/1547-7355.1396, March 2008.
Schoch-Spana, M., Franco, C., Nuzzo, J. B., & Usenza, C. [
2007
].
Community engagement: Leadership tool for catastrophic health events.
Biosecurity and Bioterrorism: Biodefense Strategy Practice and Science
, 5, 8–25.
Schön, D. A. [
1984
].
The reflective practitioner
. New York: Basic Books.
Schön, D. A., & Rein, M. [
1997
].
Frame reflection: Toward the resolution of intractable policy controversies.
New York: Basic Books.
Selznick, P. [
1949
/1984].
TVA and the grass roots
. Berkeley: University of California Press.
Sen, A. K. [
1983
].
Poverty and famines: An essay on entitlement and deprivation
. New York: Oxford University Press.
Silver, N. [
2012
].
The signal and the noise: Why so many predictions fail—but some don’t.
New York: Penguin Press.
Smith, K. E. [
2013
].
Beyond evidence based policy in public health: The interplay of ideas
. Basingstoke, UK: Palgrave Macmillan.
Solnit, R. [
2009
].
A paradise built in hell: The extraordinary communities that arise in a disaster
. New York: Viking.
Spence, P. R., Lachlan K. A., & Burke J. M. [
2007
].
Adjusting to uncertainty: Coping strategies among the displaced after Hurricane Katrina.
Sociological Spectrum
, 27, 653–678.
Spence, P. R., Lachlan K. A., & Griffin, D. R. [
2007
].
Crisis communications, race, and natural disasters.
Journal of Black Studies
, 37, 539–554.
Strolovitch, D., Warren, D., & Frymer, P. [2006]. Katrina’s political roots and divisions: Race, class, and federalism in American politics. In Understanding Katrina: Perspectives from the social sciences. Social Science Research Council. Available at //understandingkatrina.ssrc.org/FrymerStrolovitchWarren/.
Sunstein, C. R. [
2007
].
Worst-case scenarios
. Cambridge, MA: Harvard University Press.
Sze, J. [2006]. Toxic soup redux: Why environmental racism and environmental justice matter after Katrina. In Understanding Katrina: Perspectives from the social sciences. Social Science Research Council. Available at //understandingkatrina.ssrc.org/Sze/.
Thaler, R. H., & Sunstein, C. R. [
2008
].
Nudge: Improving decisions about health, wealth, and happiness
. New Haven, CT: Yale University Press.
Thomas, J. C., Sage, M., Dillenberg, J., & Guillory, V. J. [
2002
].
A code of ethics for public health.
American Journal of Public Health
, 92, 1057–1059.
Tracy, L. [
2007
].
Muddy waters: The legacy of Katrina and Rita
. Washington, DC: American Public Health Association.
Trotter, G. [
2007
].
The ethics of coercion in mass casualty medicine.
Baltimore, MD: Johns Hopkins University Press.
University of Florida. Cooperative Extension Service. Institute of Food and Agricultural Sciences. [
1998
]. Disaster planning for elderly and disabled populations. In Charles Brown, Carol Magary, and Ami Neiberger [Eds.].
The disaster handbook
. Gainesville: University of Florida. Available at //disaster.ifas.ufl.edu/chap2fr.htm.
Upshur, R. E. [
2002
].
Principles for the justification of public health intervention.
Canadian Journal of Public Health
, 93, 101–103.
US Department of Justice. [2006]. Making community emergency preparedness and response programs accessible to people with disabilities. Available at //www.ada.gov/emergencyprep.htm.
Uscher-Pines, L., Duggan, P. S., Garoon, J. P., Karron, R. A., & Faden, R. R. [
2007
].
Planning for an influenza pandemic: Social justice and disadvantaged groups.
Hastings Center Report
, 37, 32–39.
Vale, L. J., & Campanella, T. J. [
2005
].
The resilient city: How modern cities recover from disaster
. New York: Oxford University Press.
Vawter, D. E., Garrett, J. E., Gervais, K. G., Prehn, A. W., DeBruin, D. A., Tauer, C. A., … Marshall M. F. [2010a]. For the good of us all: Ethically rationing health resources in Minnesota in a severe influenza pandemic. St. Paul: Minnesota Center for Health Care Ethics and University of Minnesota Center for Bioethics. Available at //www.health.state.mn.us/divs/idepc/ethics/.
Vawter, D. E., Garrett, J. E., Gervais, K. G., Prehn, A. W., & DeBruin, D. A. [
2010
b].
Dueling ethical frameworks for allocating health resources.
American Journal of Bioethics
, 10[4], 54–56. doi: 10.1080/15265161003632989.
Vawter, D. E., Garrett, J. E., Gervais, K. G., Prehn, A. W., & DeBruin D. A. [
2011
].
Attending to social vulnerability when rationing pandemic resources.
Journal of Clinical Ethics
, 22[1], 42–53. Available at //www.clinicalethics.com/single_article/na3ecrwzanA.html.
Vawter, D. E., Garrett, J. E., Prehn, A. W., & Gervais, K. G. [
2008
].
Health care workers’ willingness to work in a pandemic.
American Journal of Bioethics
, 8[8], 21–23. doi: 10.1080/15265160802318204.
Vawter, D. E., Gervais, K. G., Garrett, J. E., & Pandemic Influenza Ethics Work Group [
2007
].
Allocating pandemic influenza vaccines in Minnesota: Recommendations of the pandemic influenza ethics work group.
Vaccine
, 25[35], 6522–6536.
Verweij, M. [
2006
].
Project on addressing ethical issues in pandemic influenza planning: Equitable access to therapeutic and prophylactic measures.
Geneva: World Health Organization.
Walker, B., & Salt, D. [
2006
].
Resilience thinking: Sustaining ecosystems and people in a changing world
. Washington, DC: Island Press.
Walzer, M. [
1973
].
Political action: The problem of dirty hands.
Philosophy and Public Affairs
, 2, 160–180.
Wilkinson, R. G. [
1996
].
Unhealthy societies: The afflictions of inequality
. London: Routledge.
Wilkinson, R. G., & Pickett, K. [
2009
].
The spirit level: Why greater equality makes societies stronger
. New York: Bloomsbury.
Williams, A. [
1997
].
Intergenerational equity: An exploration of the “fair innings” argument.
Health Economics
, 6, 117–132.
Wizemann, T., Reeve, M., & Altevogt, B. M. [Rapporteurs]. [2013a]. Engaging the public in critical disaster planning and decision making: Workshop summary. Institute of Medicine Forum on Medical and Public Health Preparedness for Catastrophic Events, Board on Health Sciences Policy. Washington, DC: National Academies Press. Available at //www.nap.edu/download.php?record_id=18396.
Wizemann, T., Reeve, M., & Altevogt B. M. [Rapporteurs]. [2013b]. Preparedness, response, and recovery considerations for children and families: Workshop summary. Institute of Medicine Forum on Medical and Public Health Preparedness for Catastrophic Events, Board on Health Sciences Policy. Washington, DC: National Academies Press. Available at //www.nap.edu/download.php?record_id=18550.
Wray, R., Rivers, J., Whitworth, A., Jupka, K., & Clements, B. [
2006
].
Public perceptions about trust in emergency risk communication: Qualitative research findings.
International Journal of Mass Emergencies and Disasters
, 24, 45–75.
Zack, N. [
2009
].
Ethics for disaster
. Lanham, MD: Rowman and Littlefield.