61 Infectious diseases ethics

Jay A. Jacobson

Dr. I was vaguely disturbed by something about the slim, handsome young man who was in his examining room because of an unstable knee. The knee, however, had unequivocal indications for surgical repair of three ligaments. It could probably be done by arthroscopy but might require an open procedure. The patient agreed to the procedure and it was scheduled. Dr. I asked him to provide a blood sample for routine laboratory tests. He also scheduled a preoperative chest X-ray. After the patient left, Dr. I added an HIV test to the laboratory request. Dr. I was anxious about blood-borne infections and was glad he had gotten his hepatitis B shots. He knew one colleague who had been very ill from that viral infection and another one who was a hepatitis B antigen carrier but had been afraid to reveal that at his hospital or clinic for fear of losing his privileges. The day before the planned surgery, the patient’s laboratory and radiology reports came back. His blood cell count showed reduced lymphocytes. His clotting studies were normal. The HIV test was positive. To make matters even more perplexing, the radiologist reported a lung infiltrate that suggested tuberculosis. Dr. I wondered about what to tell his patient and what to do about the surgery.

What is infectious diseases ethics?

Infections are important because they are major causes of disease, death, and disability. Paradoxically, most are curable and many are preventable. They are unique in that they can be knowingly or unintentionally transmitted from person to person. They cause serious epidemics and devastating pandemics. Finally, despite remarkable technical progress that has radically diminished the incidence of childhood infections in developed countries and entirely eliminated smallpox, new infectious diseases such as Ebola virus infections, severe acute respiratory distress syndrome (SARS) and Avian influenza continue to emerge, evolve, and kill significant numbers of people and frighten and threaten many more. Infectious diseases entail some unique ethical features that are often encountered by public health officials. The fact that nearly all infectious diseases are caused by microorganisms and that many are relatively easily transmissible, diagnosable, treatable, curable, and preventable leads to the characteristic ethical problems that arise in the context of this class of diseases (Smith et al., 2004). Patients often bring these problems directly to physicians when they present for diagnosis, treatment, or preventive care. Ethical problems arise from conflicts between values, principles, and interests. Infectious diseases ethics examines how features of infection shape these problems, especially the tension between honoring patients’ preferences and preventing harm to others (Francis et al., 2005).

Why is infectious diseases ethics important?

Ethics

The transmissibility of an infection, such as tuberculosis or gonorrhea, places a physician’s duty of confidentiality to the patient in conflict with a duty to society and an obligation to obey the law (Fox, 1986). This may entail reporting the infected patient to public health authorities so that they can investigate an epidemic, alert contacts, and arrange diagnostic testing and treatment. Such mandatory reporting may be inconsistent with the patient’s expectation of confidentiality. Disclosure of this requirement prior to diagnosis may change the expectation and avoid this potential conflict. However, it may make the patient reluctant to proceed with proper diagnosis and treatment. In that event, to ensure best possible care of his patient, the physician can correct any misunderstandings and explain other options. Physicians can assure patients that public health practitioners will respect their privacy insofar as possible. The doctor can remind the patient that he, himself, can alert his contact(s) to their exposure and reduce the shock of a public health visit.

Because diagnostic tests for infection in symptomatic and even asymptomatic individuals have value to others, the usual calculus of benefit and risk to the patient may be expanded to include those benefits. The standard practice of voluntary informed consent may be modified to accommodate strong recommendations, presumed consent, or required testing. It was common practice in the USA, for instance, to test all hospitalized patients for syphilis without their informed consent when this infection was more prevalent (Nakashima et al., 1996). Screening of refugees for the human immunodeficiency virus (HIV) and hepatitis B is currently carried out (Barnett, 2004).

The generally safe, effective, brief, and relatively inexpensive treatment and cure of infectious diseases make it unusual for patients to refuse treatment and more difficult for doctors to understand and accept such refusals. If the patient’s infection is likely to be transmitted to others, as tuberculosis would be, his/her refusal is even more problematic. Here, too, considerations of third parties may lead to respectful efforts to persuade patients or to even stronger measures that would seem to abrogate the principle of voluntary informed consent.

Because so many infectious diseases can be prevented, physicians have opportunities and perhaps a duty to recommend measures to prevent them. Sometimes this could help patients to avoid a serious, difficult to treat infectious disease such as tetanus. In many cases, like measles or hepatitis B, disease prevention for the patient, such as immunization, also provides protection for the community. Therefore, the physician may not always be able to offer the patient the usual option to refuse an intervention since some immunizations, such as polio and yellow fever, may be required for school entry or travel to another country.

Because some infectious diseases, such as meningitis, occur suddenly, advance rapidly, and impair cognitive function, there may be only a brief time during which patients can participate in medical decision making. Although most patients acquiesce quickly to diagnostic tests and antibiotic treatment, refusals of either can be very disconcerting. It is important to investigate the patient’s reasons for refusing a diagnostic test and correct any misunderstandings that contribute to the refusal. While a diagnostic test such as a lumbar puncture is desirable and helpful, a sustained refusal does not preclude effective treatment. Fortunately, there are ethical options that do not absolutely depend on a laboratory-confirmed diagnosis. Because probabilistic selection of antimicrobial agents is virtually the norm in infectious disease management, a clinician can proceed to use one or more agents to address the most likely causes of meningitis in that patient.

The person-to-person transmissibility of infectious disease in the context of a medical encounter makes this category of diseases unique and raises special ethical issues. The problem was first recognized by transmission of group A streptococci on doctors’ hands to obstetric patients, who developed puerperal fever. Recent concerns have focused on the possible, but rare, transmission of hepatitis B and HIV between patient and doctor or dentist. Does the doctor have an obligation to accept some level of personal risk to care for a patient with a communicable disease? Does a doctor with a transmissible infection have a duty to avoid or anticipate the risk of transmission and, if the risk is not eliminated, to disclose it to patients (Hoey, 1998)?

To treat infections, doctors usually prescribe antimicrobial drugs. The widespread use of a particular antibiotic may induce microbial resistance to that agent and possibly the entire class to which it belongs. Examples include vancomycin, penicillins, and cephalosporins. The benefit of using an especially potent or specifically targeted antibiotic for a current patient conflicts with the possible loss of benefit to future patients. A situation commonly encountered in infectious diseases, the empiric use of a new, broadly active antibiotic before the identity and sensitivity of the pathogen is known confounds this problem. We may provide no added benefit to the present patient and increase the risk of antimicrobial resistance and therapeutic failure for future patients (Metlay et al., 2002; Foster and Grundmann, 2006).

Law

Although most laws address medical treatment in general, there are some that pertain to certain categories of disease. Some infectious diseases, because they can be transmitted and prevented, have evoked laws intended to reduce transmission and protect individuals and the public (Colgrove and Bayer, 2005). Laws mandate immunizations, such as those for measles, diphtheria, polio, rubella, tetanus, and Haemophilus influenzae, for children by a certain age or upon school entry. They may require yellow fever vaccination as a condition of entry to certain countries. While not often used, there are laws that permit quarantine of exposed and potentially infected and contagious persons. Historic examples include streptococcal scarlet fever and smallpox. The most well-known recent example is SARS. An avian influenza pandemic might provoke this response (Gostin, 2006).

Other laws facilitate surveillance and epidemiological investigation. Many government entities require reporting of cases of particular infectious diseases to track disease incidence and the contact of exposed individuals for testing, treatment, or prevention (Chorba et al., 1989). For some infectious diseases, such as syphilis and tuberculosis, laws require screening and treatment if infected. These laws are responsive to the incidence of these diseases. Laws about the manner of testing also respond to the social and political environment. Early in the HIV epidemic in the USA, some states had laws that permitted anonymous, hence, not individually reported, testing. Some required counseling and informed consent before testing (Frith, 2005).

Because of fear and stigma associated with some infectious diseases, most recently HIV/AIDS, some laws have addressed discrimination against infected persons in schools or the workplace. In the USA, HIV/AIDS (acquired immunodeficiency syndrome) is legally regarded as a disability and patients with it acquire the protections afforded by the Americans with Disabilities Act (Webber and Gostin, 2000). Also, in the USA, some infectious diseases, because of their risk to others, qualify patients for free treatment, testing, and prevention at public health clinics.

Policy

Just as there are laws focused on infectious diseases, there are policies about them that address behaviors and practices of health professionals. Like laws, policies are written at many levels: professional organizations, healthcare organizations, hospitals, and clinics. Again, transmissibility and prevention are common themes. Hospital policies that address when and how to gown, glove, mask, and wash hands are familiar examples. They may require employees and staff to be immunized against hepatitis B to protect themselves and patients. Hospitals may require annual or post-exposure testing for tuberculosis to identify, treat, and prevent transmission. There may be policies about when and for how long susceptible staff exposed to an infection such as varicella must stay away from work.

Other policies may address which staff may be excused from caring for certain infected patients. On the one hand, policies may require staff to care for HIV-infected patients and to use appropriate infection control measures. On the other hand, some policies may excuse susceptible pregnant healthcare professionals from caring for patients with cytomegalovirus infection or varicella.

Policies for doctors infected with a transmissible agent such as hepatitis B or HIV are usually crafted to protect patients and permit physicians to practice safely. They take into account infectivity, type of practice, and associated risk and usually involve monitoring of the physician’s health status and patient outcomes (Reitsma et al., 2005). Hospital policies also address what can and should be done for employees or staff exposed to potentially infectious material.

Professional organizations such as the American Medical Association, Canadian Medical Association, and British Medical Association have policies that apply to doctors who encounter patients with infections. General policies prohibit discrimination and require that doctors obey the law. This means that a doctor may not exercise personal discretion in deciding whether to treat and/or complete a required report on a patient with an infectious disease. Recent policies have addressed the specific obligation to treat HIV-infected patients within one’s scope of practice (American Medical Association, 1988; Canadian Medical Association, 1989) and to take precautions against the transmission of hepatitis B.

How should doctors approach ethical problems of infectious disease in practice?

Patients may realize that details of their illness may be accessible to others with a “need to know.” They may not be aware of the need to report their name and particular infectious disease to public health officials. Clinicians should inform patients who may have a reportable infectious disease that the law requires reporting of a clinical or laboratory diagnosis. This disclosure should include the benefits to the patient of proceeding with diagnosis and treatment, the potential benefit to others if contacts are elicited and investigated, and the practice of public health officials to protect confidentiality insofar as possible. Doctors should know the law with respect to infectious diseases, because in some jurisdictions, the laboratory must report positive results.

Because treatment for infectious disease is relatively simple, safe, and effective, patients accept it almost routinely. However, because all drugs have potential adverse effects, doctors should advise all patients of the risks as well as the benefits of treatment.

When a competent patient refuses therapy for a specific communicable and reportable disease such as tuberculosis, doctors should strive assiduously to determine what the patient understands about the disease, its natural history with and without treatment, and the risk and consequences of transmission to others. Often when clinicians recognize knowledge gaps and misunderstandings, they can explain things well enough to secure understanding and consent to treatment. If that fails, doctors should remind their patient about the necessity of reporting and the likelihood that public health officials will be concerned about adherence to required treatment and take steps to achieve it, monitor it, or restrict the patient’s movements to minimize risk to others. The doctor should not use steps beyond information and sound argument to persuade the patient. The doctor should personally comply with reporting requirements to the health department.

The duty to do good for the patient and provide competent medical care is not obviated by an exaggerated fear of personal risk. Doctors with no likely exposure to a patient’s blood or bodily fluids have no basis for avoiding their duty to care for their patient with an infection transmitted via these fluids. Clinicians who risk such accidental exposure in the course of surgery or procedures have an understandable concern about personal risk. An appropriate way to address it is to use prevention when possible, such as personal immunization against hepatitis B, universal precautions, safe needle use, and masks and gowns when appropriate to minimize transmission of blood- and fluid-borne pathogens.

It is not appropriate to test patients for infections like HIV surreptitiously and/or decline to provide medically necessary treatment to them because of a known or suspected infection (Beecham, 1987; British Medical Association, 1987). If medical treatment is withheld for that reason and the doctor offers an alternative but untrue explanation for the refusal, it is even more ethically inappropriate.

If a doctor has likely been exposed to a transmissible pathogen, he/she has two reasons to determine if an infection has occurred. The first is their personal health, since many infectious diseases such as HIV, hepatitis B, and syphilis can be averted or effectively treated if suspected or diagnosed at a very early stage. The second is to prevent inadvertent transmission to a patient. If a doctor discovers that he or she has an infectious disease transmissible in the context of their practice, the doctor should comply with the policy that governs such situations in that institution. In the absence of a policy, doctors should seek advice from an infectious disease specialist, preferably the hospital’s infection control officer and also determine whether any overriding public health policies apply (Reitsma et al., 2005).

Because overuse and unnecessary use of certain antibiotics contribute predictably to the emergence of microbes resistant to them, doctors should choose antibiotics thoughtfully. While it is generally desirable to optimize care for the present patient, if that treatment compromises or even precludes effective treatment for many other future infected patients then considerations of justice should weigh significantly in decision making. It is appropriate to use a drug when it is the only or far superior choice for a specific proven infectious agent. Even if this may contribute to resistance, the predictable benefit, lack of an equally effective alternative, and the low likelihood of induced resistance in this particular case argue for the principle of optimizing patient benefit. Quite commonly a patient has an infection of uncertain etiology, possibly but not probably requiring the antibiotic of concern. One could use the newer, broader antibiotic “just in case.” However, the patient benefit here seems diminished compared with the possible harm to others if resistance emerges. As doctors make these difficult choices, they should consider the probability of infection with the pathogen of interest and the rapidity and severity of the infection that would occur if that pathogen were not effectively treated. A thoughtful balance of all these considerations is all that we can expect of clinicians, but we should expect nothing less (Metlay et al., 2002; Foster and Grundmann, 2006).

The case

Dr. I erred when he obtained a potentially life-changing test and did not inform his patient and obtain consent. He probably realized this when the result returned. At that point, the ethical imperatives for Dr. I are to ascertain whether the patient knows his HIV status, to explain why the patient was tested for HIV, to disclose the results of that test and the chest radiograph, to defer the scheduled operation until it is safe and desirable for the patient to proceed, to determine whether the patient has another doctor who can capably address his infectious diseases, and to find out if he has an obligation to report the HIV result to health officials and, if so, disclose that to the patient and report it. If and when the knee surgery is likely to be safe and beneficial for the patient, it should be performed using universal precautions and sterile technique. Dr. I should learn what preventive measures are available for him if he sustains an exposure to infectious material in the course of surgery.

For future cases, Dr. I can prevent ethical problems if he candidly addresses his concerns about blood-borne pathogens with his patients, discloses what steps he prefers to take to assess and prevent the risk of transmission, discloses the reporting requirements for positive tests, and reaches a mutually agreeable decision about how to proceed. He should become knowledgeable about the actual risk of infection from surgery on HIV-infected patients especially those on effective antiretroviral therapy. He should be clear about whether his reluctance to operate on these cases reflects an evidence-based fear of infection, a misperception of the risk, or other common but professionally inappropriate responses to some of the individuals at greatest risk of infection.

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