The Cambridge textbook of bioethics

A 42-year-old female sees her family physician for a vaginal discharge. She and her physician have a long-standing doctor–patient relationship, as well as a personal friendship. Three weeks previously, the patient had been to a sales convention in Reno and committed a ‘‘marital indiscretion.’’ She is worried she may have a sexually transmitted disease (STD). She gives consent for her physician to do the appropriate diagnostic work-up and treatment, but states that if this is an STD she doesn’t want her physician to report it to the public health authorities, nor to tell her husband, with whom she has had sexual intercourse since her return from the convention two weeks ago.

What is public health ethics?

Public health has been described as the science and art of promoting and protecting health, preventing disease, prolonging life and improving quality of life through the organized efforts of society (Last, 2001). It achieves these goals using community interventions, disease control, and principles of epidemiology and biometry. Public health ethics is concerned with the ethical issues raised by such community and population-based approaches to health problems.

While the goals of public health and clinical medicine are to increase well-being, the latter uses individual action and intervention for the good of individual well-being, while the former uses a social approach to improving the good of communities. The principles used in determining which programs are worthy of public health action and which are not have evolved over time; the

elaboration of these principles is now gaining currency in the fledgling field of public health ethics (Kass, 2001; Roberts and Reich, 2002; Nixon et al., 2005). Ethical principles for consideration in planning for disaster responses to pandemic influenza have recently been proposed (University of Toronto Joint Centre for Bioethics, Pandemic Influenza Working Group, 2005). Most of these principles would also apply to the reasoning for requiring a reporting and surveillance system in the first place.

Various authors have proposed public health ethics frameworks that would uniquely appeal to one or more of utilitarianism, duty-based systems, or communitarianism. In all cases, the basic moral considerations are to produce benefits to the public as a whole, while minimizing harms, fairly distributing benefits and burdens, respecting individual autonomy and privacy, and honoring prior commitments and promises (Childress et al., 2002). If a principles-based approach is used, the following principles have been proposed.

Effectiveness. A public health intervention or requirement should have been proven to be effective in preventing or mitigating specific health conditions. For example, reporting and early intervention are known to reduce the spread and impact of sexually transmitted disease (STD).

Proportionality. Any moral infringement that will be incurred with the effective intervention should be considerably outweighed by the benefits gained. In the case of STDs, the benefits

are to prevent or alleviate harm to any sexual partners of the patient.

Necessity. The intervention proposed should produce an outcome that cannot be produced by another intervention that does not create a moral infringement. As STDs do not go away by themselves, suspected contacts need evaluation and treatment.

Least infringement. Only the least amount of restriction or disclosure of information should occur. The patient in our case, would not have any other non-STD-related information transmitted to the health department. Further, encouraging the patient to speak with her husband first would reduce the harm that might occur if the husband first hears about the exposure from a public health worker.

Public justification. Public health policies and the imposition of such policies/rules/regulations on individuals or families need to be justified through public debate. The need for a law for reporting of notifiable conditions has been debated in the public arena many times and deemed in nearly all political jurisdictions to be a necessity. When notification occurs with patient-identifying information, then discussions ensue with the patient by both the physician and the public health agency as to why disclosure is required, and then contacts are traced.

Reciprocity. Society has an obligation to mitigate the burdens imposed by public health regulations and actions by supporting an individual who is complying with public health mandates. Training physicians in counseling patients about STD case reporting and assisting patients in educating and informing partners are examples of reciprocity.

Transparency. Similar to public justification, this principle requires public deliberations on the determining of public health laws, rules, and regulations; public accountability for the imposition of those rules; and the assessment of their effectiveness. Public reporting of STD trends would be an example.

In this chapter, our specific focus is on the ethical issues raised by reporting and surveillance for communicable diseases. This is arguably the most important and most common interface between clinicians and public health agencies. We will review the ethical and legal aspects of when clinicians’ duties to the public’s health may supersede their duties to their patients, recognizing that, while reporting infectious disease cases to public health authorities may create a hardship on the part of patients, the clinician’s role is not solely to that patient but also legitimately extends, in certain circumstances, to the public’s welfare.

What is public health reporting and surveillance?

One of the great accomplishments in healthcare in the twentieth century has been the reduction of the impact of infectious diseases in the developed world (Figure 36.1; Centers for Disease Control and Prevention, 1999a). While sanitation and the advent of antibiotics and immunizations are two of the key factors in infectious disease control and prevention, a third important factor has been public health surveillance systems designed for tracking and reacting to trends in infectious disease incidence (Centers for Disease Control and Prevention, 1999b). Since the second half of the nineteenth century, surveillance has largely relied on the goodwill of physicians and healthcare institutions to report the diagnosis (or suspicion of a diagnosis) of diseases that have relevance for prevention and control in the population at large (Koo and Wetterhall, 1996).

While clinician reporting to public health authorities started out as voluntary (Fox, 1986), in the twenty-first century nearly all countries have laws that require clinicians to report incidents of an array of diseases. Which diseases are reportable is dependent on the jurisdiction and changes over time as the incidence, treatment, and control of diseases have changed. The World Health Organization through its International Health Regulations currently requires reporting of only three diseases: plague, cholera, and yellow fever (World Health Organization, 1998). In the

Annual rate (per 100 000 population)

1000

40 states have

health Influenza pandemic departments

800

600

Last human-to-human transmission of plague

Year

USA and Canada, each state and province has its own list of reportable conditions (Roush et al., 1999), often based upon recommendations from the Centers for Disease Control and Prevention (2006a). The case definitions are provided as well (Centers for Disease Control and Prevention, 2006b). Canada is the manager for the Global Public Health Intelligence Network, which searches the World Wide Web for communicable disease reports (Public Health Agency of Canada, 2004). Each province in Canada has its own list of reportable diseases in addition to a list of diseases under surveillance, carried out through its provinces in the Canadian Integrated Public Health Surveillance program.

Further, in some jurisdictions not only must clinicians report suspected or confirmed cases of some communicable diseases but laboratories are mandated to report as well. Therefore, even if the patient asks the clinician not to report her own case, the case will be reported to the relevant authorities if laboratory studies are done to confirm suspected diagnoses.

What criteria are used to determine which diseases/conditions need reporting?

Obtaining identifiable information about an individual poses serious concerns of privacy for the

patient. Additionally, public health agencies recognize that reporting of diseases takes time and effort by practitioners, and also requires resources at the local public health level to review reports, trace contacts, collate data, and report surveillance information. Consequently, over the years, fairly strict criteria have evolved for determining which diseases to list as reportable.

Surveillance systems are designed to spot trends in incidence for diseases (i) that occur normally in the population (e.g., Lyme disease, pneumococcal pneumonia, chlamydial infection), (ii) that occur in regular outbreaks (e.g., influenza, gastroenteritis, hepatitis A), and (iii) that are not expected to occur – where one case could be a major problem (e.g., measles, meningococcal meningitis, hantavirus). In the first case, spotting increasing trends may encourage public health personnel to move available resources from one program to another to help to reduce the incidence over time. In the second case, contact tracing and source eradication or isolation would be important in a timely fashion. In the third case, immediate mobilization of all available resources might be necessary to limit any further spread, particularly for highly serious diseases like hantavirus, plague, Ebola virus, or severe acute respiratory syndrome (SARS). Reporting completeness is particularly important for this last

category of diseases, where one case is cause for alarm.

The criteria used are related to seriousness of the disease, potential for transmission by either human-to-human or animal-to-human methods, and ability to control and/or treat the problem.

Unfortunately, we know that the norm is underreporting by clinicians and institutions. Various studies have shown that, on average, only 63% of cases are reported, and, depending on the disease and jurisdiction, somewhere between 10% (giardiasis; Campos-Outcalt, et al., 1991) and 99% (tuberculosis; Trepka et al., 1999) of disease-specific cases are reported (Doyle et al., 2002). A 2002 study in the USA (St Lawrence et al., 2002) revealed that ‘‘The frequency of case reporting [by clinicians] was lowest for chlamydia (37% . . . ), intermediate for gonorrhea (44%), and highest for syphilis, HIV, and AIDS (53–57%).’’ If the relative completeness of reporting does not change from time to time, then incidence trends are still good gauges of actual disease activity in the population, and public health authorities can respond accordingly.

Why is public health ethics important?

While public health functions have only been part of governmental activities in their current form since the mid 1800s, they originally evolved to protect the public broadly from the introduction or spread of communicable diseases. In the early years, public health activities were quite liberty restrictive and impacted mostly on immigrants and the lower classes: mandatory isolation through quarantine, rejection of diseased individuals attempting to migrate at national borders, enforced treatments. While we are not as heavy handed about these activities these days, in emergencies classic public health interventions are still used. For example during the SARS outbreak in 2003 in Toronto, isolation and quarantine of suspected cases and limited hospital access occurred (National Advisory Committee on SARS and Public Health, 2003). There was heightened surveillance of

airline travelers and travel advice was issued (World Health Organization, 2003).

An example of the third principle, mandatory treatment, is invoked with tuberculosis, wherein directly observed therapy and sometimes police actions are undertaken to force individuals to comply with required treatment (Taylor et al., 2005).

Lapses in mandatory compliance with case reporting are sanctioned in some jurisdictions by substantial fines. Courts have held that doctors may be liable if persons are infected by the doctor’s patient if the doctor ‘‘ . . . negligently fails to diagnose a contagious disease, or, having diagnosed the illness, fails to warn members of the patient’s family . . . ’’ (Menikoff, 2001).

Clearly, when the condition of one patient has a potential for harming another, we are under legal imperative to minimize harm to others who are not our patients. Indeed, there are many legal mandates to violate our patient’s confidentiality, or for which we have dual loyalties: suspected child and elder abuse, occupational injury, and insurance reimbursement are just three examples (R. E. G. Upshur and S. R. Benatar, unpublished observations).

Of course, legal imperatives are not necessarily coincident with moral imperatives. For, by divulging personal patient information, we violate our duty to maintain our patient’s confidence and privacy. Whereas in health emergencies like SARS, where large numbers of individuals may be at risk, the physician’s responsibility shifts from being primarily patient oriented to being public oriented (Lo and Katz, 2005), with individual patients for whom transmission of disease is likely to be more limited, why shouldn’t we work hard to protect our patient’s privacy and the key ongoing trust relationship we have?

Trust is not the only concern for violating the privacy pact in the doctor–patient relationship. We have concern for other types of harm patients may experience when certain types of disease are known to afflict them: stigmatization (HIV), embarrassment, ostracism, reduced insurability, discrimination in employment and housing, and even political retribution can be the consequences of private

health information becoming public. How do we balance these individual concerns with the public’s welfare? What are the key components of public health ethics decision making?

How should I approach public health ethics in practice?

The translation of public health ethics principles into daily medical practice is fairly straightforward for reporting notifiable conditions. All things considered, not only is reporting the correct ethical act to take but it is also the required act to take legally in virtually all political jurisdictions.

Firstly, the clinician needs to be familiar with the diseases required to be reported in their respective practice jurisdictions, as well as the mechanisms to be used to make full reports. Many jurisdictions make this information available through newsletters or on their websites (e.g., Connecticut Department of Public Health, 2006).

Secondly, clinicians need to appreciate the value of reporting diseases. By internalizing this appreciation, the hesitancy to comply with the requirement (or alternatively the willingness to comply with a patient’s request not to report a disease, as in the case at the beginning of this chapter) will be reduced. Physicians should not consider this requirement unpleasant; instead it should be considered virtuous. Having personal conviction that taking an action is the right action helps in complying more completely with the reporting requirement. Additionally, it shows conviction during the discussion with the patient. This would be consistent with the effectiveness, necessity, and proportionality principles.

Thirdly, the clinician should practice discussing the need to report diseases with patients, including working on specific wording that is most effective for communicating the need with sympathy and care. Some reportable diseases, like cholera, measles, or tularemia, are not as sensitive to discuss with patients as STDs or diseases with social stigma

attached, such as tuberculosis or Hansen’s disease (leprosy). As with other diseases that carry profound implications, there are various ways to communicate unpleasant information to patients (Epstein et al., 2004). We spend a lot of time training oncologists to discuss the options of cancer treatment and prognosis, or palliative care with patients (Sutherland et al., 1991; Hagerty et al., 2005). Similar training and practice is appropriate for reporting discussions. Frank discussion and proposed actions are necessary to conform to a transparency approach.

Finally, in keeping with the principle of reciprocity, the clinician should be sure that the health department is supplying the patient with all of the emotional and treatment support appropriate for the situation. By entering into the reporting relationship, the clinician is, in a sense, now an arm of the government, which has responsibility for assuring that the burdens imposed by breaking confidentiality are offset as much as possible with support for minimizing the harm that may come of it.

The case

The clinician empathized with the patient’s request and then discussed the importance of reporting for the good not just of the patient’s husband but also so that the contacts from whom the patient had received her illness could also be traced for proper testing and treatment. In addition, the clinician made the patient aware that her clinician was not the only source of information to the public health authorities: for an accurate diagnosis some tests would have to be sent to the laboratory, which is also mandated by law to report information about positive test results. The clinician emphasized that the public health authorities are quite knowledgeable and sensitive about handling these situations, and that they try to keep contacts anonymous, though, of course, if contacts only had sex with one person the inference would be obvious. The patient nervously consented to testing and reporting, but asked that she be allowed to speak with

her husband before the physician reported to the public health authorities. The clinician agreed, suggesting a timeline by which date the patient needed to report back, or the clinician would have to proceed with the notification as mandated by law. The clinician also set a time for calling the health department and patient to assure a smooth transition for the reporting and contact tracing.

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Doyle, T. J., Glynn, M. K., Groseclose, S. L. (2002). Completeness of notifiable infectious disease reporting in the United States: an analytical literature review. Am J Epidemiol 155: 866–74.

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Fox, D. M. (1986). From TB to AIDS: value conflicts in reporting disease. Hastings Cent Rep 16(Suppl): 11–16.

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Roush, S., Birkhead, G., Koo, D., Coob, A., and Fleming, D. (1999). Mandatory reporting of diseases and conditions by health care professionals and laboratories. JAMA 282: 164–70.

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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).

What are emergency and disaster scenarios?

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

282H. Kayman, H. Radest, and S. Webb

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.

Table 37.1. Key elements of a response to a disaster or emergency

Mass casualty care challenges and procedures Infrastructure preservation

Communication barriers/breakdowns Incident command system and integration Personal and scene safety issues

Contamination, containment, and security issues Decontamination indications and sites Maintenance of regular healthcare services Personal protection and equipment issues Personal behaviors and beliefs

Psychological impact Secondary threats Ethical issues

Adapted from Waeckerle et al. (2001).

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).

Why is preparation for emergency and disaster scenarios important?

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.

Resource allocation and access to care

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

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