36 Public health ethics
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.
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).
Figure 36.1. Crude death rate for infectious disease in the USA 1900–1996. (From Centers for Disease Control and Prevention, 1999a.)
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 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.