Ethical Challenges in Preparing for Bioterrorism: Barriers Within the Health Care System

Abstract

Preparedness for bioterrorism poses significant ethical challenges. Although public health ethics and preparedness have received attention recently, health care ethics must also be considered.

In epidemics, the health care system assists public health in 3 tasks: detection, containment, and treatment. Detection might fail if all patients do not have access to care, or if physicians do not understand their obligation to report infectious diseases to public health authorities. Containment might fail if physicians view themselves only as advocates for individual patients, ignoring their social obligations as health professionals. Treatment might fail if physicians do not accept their professional duty to treat patients during epidemics.

Each of these potential ethical barriers to preparedness must be addressed by physicians and society.

THE INTENTIONAL DISPERSAL of anthrax spores in the United States demonstrates the need for preparedness for bioterrorism, and the recent outbreak of severe acute respiratory syndrome (SARS) has renewed fears of unintentional or naturally occurring infectious epidemics. In responding to these threats, the public health system has rightfully garnered much of the attention,1 after decades in which government has starved public health agencies of needed resources.2–4 However, an effective response also will require the health care system to fulfill critical roles. By the term health care system, we mean those professionals (e.g., physicians and nurses) and institutions (e.g., hospitals and health plans) obliged to diagnose, treat, and care for individuals exposed to or infected with contagious diseases. We specify contagious diseases because although anthrax is not transmissible from person to person, many experts reserve their deepest fears for transmissible agents such as smallpox, plague, hemorrhagic fevers (e.g., the Ebola, Marburg, Lassa, and Crimean-Congo hemorrhagic fever viruses), and new (e.g., SARS) or designer viruses and bacteria.5

Thinking systematically, what are the obligations of the health care system in handling contagious diseases? The health care system should rapidly identify threats, help to prevent the spread of disease in the population, and care for infected patients. These 3 tasks—detection, containment, and treatment—are vital to the efficient handling of contagious epidemics. To prepare for each task, policymakers have emphasized training,6–9 clarification of public health quarantine powers,10,11 facilities improvements, and pharmaceutical stockpiling.12–14 Although these steps are important, we wish to draw attention to several challenges related to medical ethics and professionalism that might hinder detection, containment, and treatment and that have been much less discussed. Ours is not an exhaustive compilation of the many ethical issues associated with bioterrorism, but the issues we raise have received relatively little attention recently and are at risk of being lost in the highly publicized debates over, for example, the ethics of smallpox vaccination. These issues also illustrate that contagious diseases raise critical questions about the ethical relationship between medicine and public health.15

DETECTION: REPORTING AND ACCESS TO CARE

In some bioterror scenarios, such as an aerosol release into a crowd, simultaneous widespread infections would mark an attack; if this were the case, then limiting the outbreak through early detection might provide little benefit (though early recognition and treatment of the illness might still save lives). But smaller-scale attacks are potentially much easier for terrorist organizations to organize, finance, and carry out.16 As the anthrax mailings of October 2001 demonstrated, even relatively small attacks can provoke widespread anxiety and disruption. In a stealth attack, early detection becomes critically important, as it is in stemming naturally occurring outbreaks.

To improve detection, the United States is expanding the public health system’s capacity for surveillance. However, public health surveillance relies largely on reports from health care professionals. Persons with symptoms arrive first in physicians’ offices, clinics, or hospital emergency departments. For this system to work, therefore, patients must first have access to the health care system, and their illnesses must then be reported to the public health system.

The health care system must improve its reporting performance. Many physicians are unaware of reporting requirements, complain of the administrative burden of reporting, do not see reporting as important to patient care, or are unconvinced that reporting is of value.17 Reporting must be made easier (or even automatic, through electronic links), and physicians should be given feedback on how their reports are used to safeguard public health, reinforcing the value of the physician–public health partnership. Examination of the physician’s role in reporting contagious illnesses should be included in new curricula on professionalism18 in the context of exploring the social roles of the medical profession—an issue to which we will return.

In the area of patient access to health care, more challenging dilemmas arise. Strong ethical reasons have long been recognized as supporting universal access to a decent minimal set of health care services,19 yet our nation has been unable or unwilling to accomplish this.20 Perhaps if policymakers understand that inadequate access to care poses a threat to national security, progress can be made.21,22 In the United States, more than 40 million Americans lack health insurance, and this number is rising.23,24 Although some uninsured individuals use emergency rooms to obtain care when they are acutely ill, many of the uninsured and underinsured avoid the health care system for as long as possible.20 Some have argued that bioterror-related illnesses are so severe that anyone affected would surely seek care.25 But uninsured patients discriminate poorly between appropriate and inappropriate care and tend to avoid both equally.26 Numerous studies demonstrate that the uninsured are more likely to present in an advanced stage of illness, and many die without ever being evaluated.27–29

Terrorists undoubtedly recognize that even a small-scale release of an infectious agent into a community with a high rate of uninsurance might be devastatingly effective. Because most of the uninsured are employed and working throughout cities, suburbs, and rural areas, starting an outbreak in such a community—using a low-tech approach, such as an infected “martyr”—would reduce the likelihood of early detection and raise the odds of broad spread of the disease.30 Unfortunately, this scenario is not mere speculation: “natural experiments” that simulate such an attack have demonstrated the vulnerability of poor, especially uninsured immigrant, populations and their ability to spread disease throughout the population.31,32 Many naturally occurring infectious diseases, including tuberculosis, food-borne illnesses, and HIV/AIDS, disproportionately burden the uninsured and subsequently spread to the community at large.33

Maintaining barriers to accessing health care in the face of today’s threats should be unacceptable, morally and politically. In the aftermath of the September 11 attacks, New York ordered its health care system to provide care to all possible victims34 and the state health commissioner, Antonio Coello Novello, declared to providers: “Thou shalt not ask who will pay for this.”35 Over the next 4 months, New York’s special Disaster Relief Medicaid program enrolled and cared for almost 400 000 people.36 New York dramatically streamlined the application process for Medicaid and obtained additional funding for the state pool for the uninsured. The public, government, and the medical community widely approved these actions as appropriate, given the threat.37,38

Learning from this experience, federal and state officials should make clear that individuals with symptoms that suggest infection with a contagious illness should present for evaluation and ensure that those who do can be treated without prejudice. Funding must be provided to cover screening and treatment of patients with contagious illnesses; in particular, funding for hospital emergency departments that see large volumes of uninsured patients must be increased.39 Because patients cannot be expected to know in advance whether their illness is infectious, programs can be targeted toward contagious illness but ultimately, they will need to be broad based. Finally, funding alone might not guarantee ready access to care for certain populations, especially recent immigrants and those who mistrust the health care system.22 The current policy focus on addressing racial and ethnic health disparities should be used to build a culturally sensitive primary care system in which all patients feel welcome.40

CONTAINMENT: ISOLATION BEFORE QUARANTINE

In late October 2001, the secretary of the US Department of Health and Human Services asked the states to increase their legal preparedness for potential epidemics.41 Twenty-two states and the District of Columbia have since enacted laws based on the Model State Emergency Health Powers Act, drafted by the Center for Law and the Public’s Health at the request of the Centers for Disease Control and Prevention.42,43 These laws seek to ensure that when facing a clear emergency, the public health system can carry out screening, vaccination, quarantine, and treatment.44 Even with these powers, however, the public health system cannot contain an outbreak as rapidly as might health care professionals who are willing and empowered to use short-term involuntary isolation when needed.

Of course, most contagious patients will comply voluntarily with an isolation request; but recent bioterror training scenarios assume that not everyone will cooperate with treatment and quarantines,45,46 and this assumption is borne out in experiences with SARS.47–49 Illness and fear can hinder clear thinking. Physicians should know this and be prepared to intervene if necessary. Under what legal authority might health care professionals isolate a potentially contagious patient in advance of a public health quarantine? Health care professionals have a general obligation to prevent patients from harming themselves or others and may use compulsion when necessary.50 The most common application of this power might be to “hold” psychiatric patients thought to pose a suicide or homicide risk.51 Such short-term physician holds usually require judicial review within 24 to 48 hours, but this kind of short-term legal authority could serve as an early stop to an outbreak in the event that one or more patients decline necessary interventions before the public health authority enforces quarantine.

In general, public health officers, not one’s physician, should declare quarantine, because separation of these roles allows physicians to attend to individual patients’ interests. Indeed, using professional powers to hold patients involuntarily poses a fundamental ethical challenge for physicians, because it entails overriding an individual patient’s wishes in deference to the community’s needs—balancing respect for patient autonomy against public health benefit. Challenging though it may be, however, mediating the tension between individual and community needs is integral to the role of the medical profession in society—and demonstrates why the profession must maintain some independence from both the state and patient interests.52

There are significant risks in physicians’ acting as agents of the state,53–55 yet attention to civic obligations is as ancient a part of professionalism as is attention to patients’ interests. Plato bluntly recognized this balancing act when he wrote that physicians are “statesmen” who are to do what “is best for the patients and for the state.”56(p6) More recently, Creuss and Creuss noted that during the 19th century

legal measures for the first time granted medicine a broad monopoly over health care—along with both individual and collective autonomy—with the clear understanding that in return medicine would concern itself with the health problems of the society it served and would place the welfare of society above its own.57(p943)

The original 1847 Code of Medical Ethics of the American Medical Association noted that a physician’s skills “are qualities which he holds in trust for the general good,”58(p318) and one of its 3 chapters—entitled, “Of the Duties of the Profession to the Public, and of the Obligations of the Public to the Profession”—dealt explicitly with physicians’ social duties.58(p333)

In the era after 1955, however, medicine began to move away from balancing social obligations, tilting toward a more restricted advocacy position.59,60 Obligations regarding public health were minimized, and physicians were eventually urged to ignore civic considerations altogether and to think only of the welfare of the patient before them. In 1984, Norman Levinsky wrote that “physicians are required to do everything that they believe may benefit each patient, without regard to costs or other societal considerations.”61(p1574) This statement reflected the domination of medical ethics by respect for patient autonomy and the loss of a cardinal feature of professionalism: mediation between private and community interests.53,62 But, bereft of its role as a social protector, medicine was left with only technical expertise to support its claims to professional prerogatives, which are granted by society and have since steadily eroded.63,64 Recognizing this chain of events, recent scholars of the medical profession are returning to a civic understanding of professionalism as necessary to maintaining public trust and, with it, professional privileges.65,66 Dr William Sullivan wrote of this return to a classic role for the professions in society: “Historically, the legitimacy, authority, and legal privileges of the most prestigious professions have depended heavily on their claims (and finally their demonstration) of civic performance, especially social leadership in the public interest.”63(p11)

Ethically, therefore, when time is limited, physicians should be empowered and willing to use short-term holds to prevent immediate spread of disease, because physicians’ professional duty sometimes should tilt toward protecting the public—although not incidentally, of course, most individuals will also benefit from enforced isolation and treatment. Some physicians and patients, raised on the medical ethics of the last 50 years, will chafe at the paternalism of this statement, but we find that professionalism requires meaningful attention to civic duties such as protecting the public health. Because the power to hold patients involuntarily can be abused,67 constraints such as requiring 2 physicians to concur, ensuring the short-term nature of the hold (24 hours or less), and ensuring rapid judicial review, should be applied. Legally, in jurisdictions where it is not clear whether physicians’ authority to hold patients for dangerousness applies outside the psychiatric setting, clarification is required. Bioterror training should reinforce physicians’ ethical obligations regarding isolation of dangerously infectious patients, and there should be open debates on appropriate limits to this power, as well as to address practical considerations regarding quarantine, such as when public health authorities should enforce community quarantine and how to respectfully care for those under quarantine.

TREATMENT: THE DUTY TO TREAT

Recent discussions of treatment barriers during bioterror-related outbreaks tend to focus on potential shortages of antibiotics and vaccines. But stockpiles can be calculated with reasonable certainty and increased as needed. More challenging in these scenarios is that 1 treatment variable is critically important yet very difficult to estimate: how many health care professionals will fail to show up for work because they fear contracting the illness?68

It is almost certain that some will not willingly face the risk. At least 1 hospital in China had difficulty maintaining services because of absenteeism in the face of SARS.69 Some hospitals in New York have announced they will not care for victims of bioterror attacks.70 Physician performance during epidemics, from the black plague to the HIV epidemic, has been notoriously spotty.71–73 And relatively few physicians have volunteered to receive smallpox vaccination, despite high-level government requests.74,75

There is legitimate reason for trepidation on the part of health professionals. More than one third of health care personnel treating patients after the sarin gas attack in Tokyo became ill from cross-contamination.76 Health care workers are common second-wave victims of Ebola77 and SARS.78 In the United States, there are 56 documented cases of health care workers’ becoming infected with HIV due to needlestick injuries,79 and countless more have contracted hepatitis B or C, tuberculosis, and other potentially deadly infections. Into the 1950s, exposure to and infection with tuberculosis was a near-ubiquitous medical training experience, especially for pulmonologists.80,81

Several ethical and practical bases for a “duty to treat” have been proposed that taken together provide a strong justification for its reaffirmation today.82,83 Health care professionals receive special training, which increases the general obligation to render aid to others in need, because it increases the value of the aid and may reduce the risk associated with providing it.84 Physicians have long subscribed to explicit codes of ethics that demand the duty to treat,85,86 codes that the public assumes to be binding. In 1991, despite recent interprofessional wrangling over the treatment of patients with HIV,70 72% of the public agreed with the statement that physicians are obligated to “treat all sick people.”87 Physicians also receive social standing and trust as part of a social contract, which includes an obligation to place the welfare of patients above self-interest.57

When professional associations last confronted this issue, in the early years of the AIDS epidemic, early wavering gave way to consensus that a duty to treat still exists.88 According to the Infectious Diseases Society of America and the American College of Physicians, health care professionals “must provide high-quality nonjudgmental care to their patients, even at the risk of contracting a patient’s disease.”89(p576) The American Medical Association’s recently (December 2001) adopted Declaration of Professional Responsibility states that physicians must “treat the sick and injured with competence and compassion and without prejudice,” and “apply our knowledge and skills when needed, though doing so may put us at risk.”90

Two steps should be taken to reinforce this obligation. First, language in professional codes of ethics addressing treatment during epidemics was largely removed in the 1970s, at a time when epidemics appeared to be on the wane.91 Subsequent statements focused almost exclusively on HIV/AIDS and often were framed in terms of antidiscrimination principles rather than professional obligations.92 Professional associations should make clear their current stances on physicians’ obligations to care for patients during epidemics. Ideally, the inspiring spirit and language of the early American Medical Association Code of Medical Ethics should be reaffirmed today: “When an epidemic prevails, 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.”93(p354)

Second, to justify and strengthen this obligation, special efforts should be made to ensure that health care professionals receive all reasonable preventive and treatment measures in the event of an outbreak, such as vaccines, prophylactic therapies, and safety training.94 Such preferential treatment makes practical sense, because only healthy practitioners will be of value in responding to any ongoing threat.⁹⁵ Ethically, when health care professionals tend to patients in epidemics, healthy people place themselves (and often their families) at risk to benefit the common good. The state must recognize that this burden, in some manner, should be shared by the community as a whole. This value was implicitly recognized in policy discussions regarding early smallpox vaccination for health care workers. However, beyond smallpox, health care workers should be assured that in the event of an attack, all that is possible will be done to protect them—and their families. Local stockpiles of vaccines and other therapies should be set aside for health care workers, ensuring that those who may be at greatest risk will receive early and effective protection. In addition, the families of health care workers who perish in epidemics should receive predictable compensation. By offering fair compensation, the government can further spread the burden of pursuing the public interest.

CONCLUSIONS

Defense against bioterror and naturally occurring infectious epidemics requires a strong public health system. But the public health system cannot function without an effective health care system to detect, contain, and treat infectious diseases. Hence our national defense against bioterrorism must ensure universal rapid access to knowledgeable and compassionate health care professionals who in turn can and will evaluate and care for potentially contagious patients. When ethical barriers in the health care system stand in the way of detection, containment, and treatment, they must be confronted and resolved, because undiagnosed, unconfined, and untreated infections pose a risk to individuals and the community.