In October 2001, the USA was on edge following the discovery of several letters containing anthrax. People who worked in facilities that received letters containing anthrax were sometimes stigmatized within their communities. Some employees of American Media Inc., the site of the first anthrax case, were doubly victimized. Physically affected by their potential exposure to anthrax, they were also socially stigmatized by physicians who refused to care for them, schools that turned away their children, and employers of second jobs who refused to let them work: some American Media employees who moonlighted as housekeepers were not allowed into homes to clean (Malecki, 2001).
Suddenly, around 9:50, everything momentarily appears pale pink. There is an enormous bang. Some of my colleagues have looks of terror on their faces. We can see white smoke and debris raining down in the square. The fire alarms are sounding. Although staff members leave, the doctors stay … After several minutes, we gingerly make our way to the front of the building and look down onto the stricken bus. … I grab some surgical gloves and my ambulance service physician identity card … On arrival downstairs, I meet the deputy chairman of the BMA Council … Knowing of my prehospital emergency care experience, he asks me to take over the direction of clinical operations … My assets are a building offering protection from all but a direct hit and 14 doctors, most of them experienced general practitioners with some training in emergency medicine. But we have no equipment, no communications, and no personal protective clothing. Armed with nothing, we set about maximizing the victims’ chances of survival. I have trained for such a situation for 20 years – but on the assumption that I would be part of a rescue team, properly dressed, properly equipped, and moving with semimilitary precision. Instead, I am in shirtsleeves and a pinstripe suit, with no pen and no paper, and I am technically an uninjured victim. All I have is my ID card, surgical gloves, and my colleagues’ expectation that I will lead them though this crisis (Holden, 2005).
In most situations, clinicians practice in an orderly milieu, often in coordination with other clinicians and with institutions that exist to cure disease, improve health, and/or prevent illness. Clinicians, like the rest of the population, may suddenly be faced with a chaotic world in the event of natural catastrophes, epidemics, or terror attacks: disasters that can cause terrible damage to peoples and societies. Standard ethical assumptions and medical practices may no longer be applicable. Both personal and professional equilibrium will be threatened. Ordinarily, clinicians do not face morally ambiguous situations and when they do, their own skill and experience is usually sufficient to deal with them. During a disaster, clinicians will ask themselves, “How will I resolve the dilemmas now facing me?” as they struggle with the disparate demands of their patients and the obligations of their profession (American Medical Association, 2004). In these settings, the needs of the individual patient will often conflict with the needs of the community and ethical conflicts will emerge in all phases of the disaster response (Gostin, 2003a; Institute for Bioethics Health Policy and Law, 2003). Advance disaster training and emergency medical preparedness must include planning and preparedness for sound ethical decision making in times of crisis.
National and international healthcare organizations have outlined recommendations for emergency preparedness plans. These plans often include mitigation, preparedness, response and recovery phases, and mandate frequent drills by responders. An effective response should be rapidly instituted; integrated between communities, law enforcement, public health officials, and healthcare facilities; and include the elements seen in Table 37.1, including our addition of attention to ethical issues.
Many critical problems exist in implementation of an effective disaster response. Mass casualties, especially in bioterrorism or radiation attack, will cause a sudden surge in demand for medical resources such as hospital beds, critical care equipment, medications, antidotes, staff, isolation rooms, and trained ancillary personnel, which may not be available (Church J for the Department of Defense, 2001; Hick et al., 2004). Surge capacity, or the ability to handle an unexpected increase in patient volume, will be inadequate, since emergency departments remain overcrowded with patients, log-jammed awaiting admission to equally overcrowded hospitals. Critical nursing and other ancillary personnel shortages preclude increasing numbers of beds to alleviate overcrowding and improve access to care, even in ordinary times (American Hospital Association, 2007). In addition, communication systems may fail, leading to great uncertainty among medical personnel, who may be forced to grope about for the best strategies to minimize panic and restore order.
Responses to disasters and emergencies have enormous monetary costs to societies. Many medical facilities are now in tenuous financial health owing to falling reimbursements and increasing operating costs and will depend on state, federal, or international assistance to sustain their response efforts during the crisis and recovery phases of a catastrophe. Resource allocation and triage issues will challenge local leaders and clinicians in the acute phase, as hospitals usually have a limited supply of stored medications and equipment to utilize.
Important ethical issues will surface during disasters including triage, access to care and other justice issues; privacy and confidentiality; the professional duty to treat; quarantine and its effect on patient autonomy, individual liberty and the right to refuse medical treatment; and transparency in public health planning (Pesik et al., 2001; Singer et al., 2003; Wynia and Gostin, 2004).
Planning for a successful integrated, tiered, and flexible response team to ensure access to care for all citizens is necessary. Hospital staff and clinicians will have little experience with the wide array of partners with whom they will need to interact during a crisis. Law enforcement, the military, public health officials, emergency preparedness staff, community leaders, and politicians join the clinician under conditions of crisis (USDA Forest Service, 2004; Emergency Management Institute, 2005). These personnel may have little experience in dealing with jurisdictional disputes that will inevitably arise between federal, state, and local government officials, between law enforcement and firefighters, and between officials of various institutions in their communities.
Interaction with the community is essential to make sensible and equitable moral decisions, as well as to recruit practical logistical support (Glass and Schoch-Spana, 2002). Forums in which communities learn about clinical concerns (e.g., need for quarantine) and in which clinicians learn about community concerns (e.g., fear about loss of autonomous decision making) will be important in ensuring a transparent and reciprocal response to a catastrophic event. These advance programs should help clinicians and citizens to examine their own sense of vulnerability, understand impending threats, and recognize their own strengths and value (JCAHO, 2004). In crisis, it is usually impossible to provide the time and resources for identifying, reflecting, and dealing with these issues.
In contrast with public health clinicians, practicing clinicians seldom have to deal with policy issues and community-based problems. They do not have to decide between patients or what resources will be committed to whom and for what outcomes. Indeed, “rationing at the bedside” is regarded as morally problematic in normal conditions, a probable violation of the physician’s fiduciary duty to his or her patient (Council on Ethical and Judicial Affairs, 2004a). In the USA until very recently, it was not regarded as appropriate to think of the costs in time, money, and resources in deciding whether to treat or not to treat a given condition in a given patient. Clinicians will be forced to face tough resource-allocation decisions in catastrophic emergencies (Agency for Healthcare Research and Quality, 2002).
Most developed countries make universal healthcare available to their citizens. Where this is not the case, as in the USA, the commitment is nevertheless present to provide healthcare for everyone (Council on Ethical and Judicial Affairs, 2004b). Given the complexity of the US system, disparities in disease outcomes increasingly exist between those who are reasonably well off and those who are not (Krieger and Birn, 1998). Ironically, as part of planning for health emergencies and disasters, health officials are committed to minimize death and illness in all populations. Paradoxically, crisis moves healthcare toward a fair distribution of benefits and burdens, although, as Hurricane Katrina revealed to Americans in 2005, the space between intention and reality can be very wide (Centers for Disease Control and Prevention, 2006). Whether effective or not, realistic or not, the restoration of the health of populations and communities and only secondarily of individuals is the primary concern in disaster response (Landesman, 2005).
Individuals who are poor or uninsured, however, may be reluctant to seek healthcare and are more vulnerable targets for bioterrorism attacks or mass casualties. Attempts to control contagious disease outbreaks will be unsuccessful if such affected populations fail to seek care or do so at late stages of infectivity.
Triage is commonly defined as the process of prioritizing sick or injured people for treatment according to seriousness of the injury. Clinicians will be expected to triage – to decide what groups must be left to survive on their own, what groups will get the limited resources that are available, and what groups will be judged capable of handling their own medical problems.
Urgent decisions are required in crisis situations where uncertainty prevails. These decisions will surely place lives at risk. Clinicians and their coworkers will need to be emotionally and morally prepared for doing and deciding what under normal conditions would be unthinkable (Glass and Schoch-Spana, 2002; American Medical Association, 2004).
Experts have made recommendations to help with this practice, which is unfamiliar to many primary care practitioners (Pesik et al., 2001). The Working Group on Emergency Mass Critical Care (Rubinson et al., 2005) have suggested using only interventions that are known to improve survival and without which death is likely, that are not very expensive, and that can be implemented without consuming extensive staff or hospital resources. These guidelines should also be used for patients already receiving care in an intensive care unit who are not casualties of an attack. Emergency workers and caregivers, even if asymptomatic, should probably be given priority for receiving medical care or prophylaxis to preserve the pool of available clinicians. However, every effort must be put forward to ensure non-discriminatory evaluation and treatment, as surveys have shown that the public believes that influence, wealth, and younger age impact the rapidity and degree of treatments given (Blendon et al., 2003; Human Rights Center and East–West Center (Honolulu), 2005).
Clinicians will feel the need to protect themselves and their families. Ordinarily, they manage to balance conflicting obligations between their own needs, the needs of their families, the needs of their patients, and communities (Goldrich and Polk, 2004). Suddenly faced with serious risk to themselves or to their families, that ordinary balance is likely to be unavailable. It remains controversial whether it is ethically permissible to alter a triage algorithm to protect a clinician’s family members if they are at less risk than others. However, those who then do not receive limited resources are likely to feel and express their outrage.
Clinicians may have to aid in placing entire populations into quarantine (Gostin, 2003a; Institute for Bioethics Health Policy and Law, 2003). To complicate matters further, some of these populations will be made up of people who have been wronged by their societies and who will be resentful and mistrustful of authority, including medical authority (Krieger and Birn, 1998; Covello and Sandman, 2001).
Transparent, understandable, and truthful communication about the potential for initiating quarantine during communicable disease outbreaks or acts of bioterrorism may alleviate some of the public’s mistrust in advance. This becomes absolutely essential when crises strike (Kurland, 2002; Gostin, 2003b; Gostin et al., 2003). Frightened and desperate people will not understand what is happening to them nor the reasons for the sacrifices of freedom, privacy, and comfort that they are asked to make. Quarantine may also cause significant economic harm to individuals who will lose their income by missing work. As epidemics or crises evolve, leaders may need to revise social distancing strategies, and these “course changes” may further alienate the public and lead to mistrust and confusion.
The first case outlined at the start of this chapter, hysteria and misunderstanding within the community led to the social stigmatization, discrimination, economic losses, and psychological injury seen not only in exposed victims but also in those with potential exposure to the deadly contagion. Similarly, linking severe acute respiratory syndrome (SARS) in North America to visitors from China caused widespread avoidance by the public of Asian businesses or communities, causing serious economic losses. Another example was seen in the Canadian SARS outbreak, where many people were denied access to healthcare during the quarantine process, and consequently some died from treatable diseases such as myocardial infarction or infections. During quarantine, such concerns about bodily integrity, right to privacy, a commitment to distributive and procedural justice, due process, and the right for people to control their own property and destiny will emerge (Kass, 2001; American Public Health Association, 2002).
Clinicians also need to prepare for the medical, emotional, and logistical challenges that they will face. Until social and political order can be restored, a shift in clinicians’ commitments is necessary during both triage and quarantine from respecting the fiduciary relationship with a single patient to minimizing suffering for the largest possible number of patients in a fair and just manner. While some experts feel that only public health officers and not physicians should act in this broader “civic” role, many others stress that this shift in commitments to maximize the public’s health is part of a physician’s professional obligation (Wynia and Gostin, 2004).
As is evident from our description of what clinicians face in catastrophe, tools to help to deal with the deep moral concerns that will arise are as essential as the medical algorithms for treatment of mass casualties or toxic or infectious exposures. Ethics overlaps with legal issues (Gostin, 2002; The Turning Point Public Health Statute Modernization National Excellence Collaborative, 2003), law enforcement issues, psychological issues, spiritual issues, interpersonal issues, social issues, and communication issues (McKenna et al., 2003). Yet ethics has its special role to play: to work out what clinicians ought and ought not to do in the situations in which they find themselves. Of course, clinicians do not come to crisis without a good deal of ethical experience and without their own moral values. Fortunately, ethical decision making is also facilitated by professional codes and practices. In other words, while some of the language of ethics may be esoteric, the essence of ethical deliberation is approachable if considered in advance and incorporated into preparedness plans.
Preparing for ethical decision making in crisis must be part of training for catastrophe. Briefly, this should include how to identify ethical issues, how to deal with them, and not least of all, how to evaluate them in order to improve future moral performance (Singer et al., 2003). Ethical decision making requires consideration of the medical, political, religious, social, and economic factors that taken together raise ethical issues. The values of the community in which they arise contribute as well to their complexity. So, insofar as possible, ethical decision making needs an interdisciplinary approach. No single specialty or point of view can be adequate.
Many tools for approaching ethical dilemmas in public health are available (Public Health Leadership Society, 2002). One should be familiar with the foundational principles of bioethics decision making: autonomy, beneficence, non-maleficence, and justice (Beauchamp and Childress, 2001). Exploration of different moral perspectives like rights (Uzgalis, 2001), distributive justice (Rawls, 1971), consequences (Solomon, 2000), and universal ideals (Koterski, 2000) may enhance ethical deliberation in situations involving the tension between individual liberty and the common good. The “precautionary principle” provides an excellent framework for sound ethical decision making. It requires transparency of plans and actions, inclusiveness of the affected population in the decision-making process, a commitment to accountability, and an awareness that action, even coercive action, must be taken in the face of uncertainty when there is a serious threat to the public welfare (Tickner, 2002; Kayman, 2006).
In crisis, early recognition of the signs of ethical tension is important. For example, a growing sense of discomfort or an unwillingness to communicate openly about a situation suggests that there is likely an underlying ethical dilemma confounding the situation. When possible, consultation with a multidisciplinary team or bioethicist trained in ethical deliberation is recommended. Those in state, federal, and international public health leadership positions should begin a dialogue on how to best encourage the development of such deliberative bodies, even for ordinary times. A group including nurses, social workers, chaplains, administrators, and community members can provide moral perspective and support. In the midst of crisis, this may not be possible. But if it is – and it is advisable to make every effort to have such a group available – its members will understand that they must make decisions quickly with limited, perhaps incorrect, information.
One obvious tension in crisis situations is between individual rights and freedoms and the public’s health and common good. It is likely that ethical problems will arise anytime that liberty, freedom of association, and freedom of movement are restricted. A landmark US Supreme Court ruling (1905) in Jacobson v. Massachusetts mandates that coercive public health action must be shown to be effective, necessary, least restrictive possible, proportional, and impartial. The Public Health Code of Ethics (Thomas et al., 2002) can also provide guidance for public health officials and clinicians during catastrophes.
In the second case opening this chapter, another tension is highlighted: between a clinician’s duty to treat and preserving one’s own health and safety. As seen in this case and historically in the plague and the recent SARS epidemic, clinicians must weigh the considerable health risks to themselves and their families against their professional duty to care for others. The majority of health professionals rise to the challenge, even risking (and suffering) mortality. Although the original 1847 American Medical Association’s Code of Ethics stated, “When pestilence prevails it is [physicians’] duty to face the danger … even at the jeopardy of their own lives,” some health professionals now place their own safety ahead of those patients who need their care. Because most professional codes emphasize duty over potential harm to self, healthcare institutions have an obligation during crises to promote the safety of and minimize risks to their healthcare workers. Individual clinicians are urged to consider in advance how their own moral decision making can help them to balance professional and personal obligations.
Retrospective analysis by bioethicists of ethical issues that emerge during crises, such as the SARS epidemic, can help to enable better preparation for future events and is strongly recommended (Singer et al., 2003). The evaluation in the aftermath of a crisis might include outcomes indices in various population groups, including people from different socioeconomic situations, ethnicities, ages, and gender. Research efforts by interdisciplinary teams of policy makers, academicians, healthcare providers, and community groups should focus, not only on mortality, but on the incidence of displaced peoples, of social isolation or quarantine, of variable economic losses, and so on to help communities to improve future public health or management strategies. A recent report (Daniels, 2006) has emphasized utilizing five benchmarks to address dimensions of equity: exposure of people to public health risks, inequalities in the distribution of the social determinants of health; financial and non-financial barriers to access to care; inequalities in the benefits for different groups; and the burden of healthcare cost among those less able to pay.
The keys to minimizing ethical dilemmas in times of emergencies and disasters include a basic familiarity with ethical concepts and tools, and a recognition that although uncertainty and chaos can confound all situations, an equitable, transparent, and organized approach can foster trust and cooperation among large numbers of those affected. Interdisciplinary planning with clinicians, the community, law enforcement, public health officials, and politicians is of paramount importance. Clinicians will be faced with difficult moral choices favoring the health of the public over the health of the individual. A commitment should be made that the response system will be fair, and that people will have recourse to express their concerns to formulate improvement.