The Cambridge textbook of bioethics

K. V. Iserson, A. B. Sanders, and D. Mathieu. Tucson, AZ: Galen Press, pp. 11–30.

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Larkin, G. L. for the SAEM Ethics Committee (1999). A code of conduct for academic emergency medicine.

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Sanders, A. B. (1999). Advance directives. Emerg Med Clin 17: 519–26.

Ms. G is 17 years old and needs a physical examination prior to participating in high school sports. Her physician, Dr. M, has been the primary care clinician for Ms. G and her parents for the last 10 years. During Ms. G’s last annual visit, Dr. M engaged her in a routine discussion about sex, birth control, abstinence, and safety. Ms. G asked questions but denied any sexual activity. Dr. M counseled Ms. G to continue the discussion with her mother. At today’s clinic visit, Ms. G reports that she has been sexually active for a few months and would like to start birth control. Additionally, she is worried because her menstrual period is a little late and she complains of some abdominal discomfort and a vaginal discharge. Ms. G is adamant that Dr. M does not reveal her sexual activity to her parents.

Mr. H is 47 years old and has hypertension and high cholesterol, despite an active exercise regimen and healthy eating habits. He has a strong family history of hypertension. His mother had a stroke at age 57 and is disabled. Mr. H supports his mother as well as his wife and their three young children. He refuses to take medication, either for his blood pressure or for his elevated cholesterol. He mentions that he has ‘‘no faith in medications’’ and that his mother was taking appropriate medication when she had a stroke.

What is primary care ethics?

To understand the ethics of primary care, it is important to delineate the unique characteristics of primary care. Some view primary care as the cornerstone of the healthcare system, providing ‘‘most care for most people, for most conditions, most of the time.’’ Primary care is, ideally, accessible, patient-centered, continuous and comprehensive

(Starfield, 1998). Each of these characteristics has a moral dimension.

Accessibility suggests that primary care clinicians are readily available to serve as the usual point of initial contact with the healthcare system. Depending upon the setting in which they work, they may be faced with a tremendous range of patients. Accessibility often implies that the primary care clinics are physically in the local community, giving clinicians insight into patients’ life experiences.

Patient-centered care incorporates patients’ values, goals, preferences, and needs. It ‘‘sees patients first as people, with hopes, fears, lives, jobs, families, and relationships, over and above any health problems that may be presented’’ (Rogers and Braunack-Meyer, 2004). Primary care that involves patients as partners in decision making is likely to be more effective. The challenge for clinicians is to manage values and goals that may be contrary to good health or to the clinician’s own values.

Continuous care may provide an opportunity for clinicians and patients to know one another both in sickness and in health, but it also includes the challenges of maintaining a therapeutic relationship. This can contribute to making the clinician– patient relationship ethically complex.

Comprehensive care requires that clinicians address any number of presenting physical, social, or psychological problems, in addition to providing preventive care. When referral to specialty care is necessary, the primary care clinician may need to manage conflicting recommendations while keeping an eye on the ‘‘big picture’’ with the patient.

Primary care clinicians encounter ethical issues on a regular basis in their routine care of patients. However, traditional bioethics scholarship and teaching has highlighted specific high-intensity ethics topics usually encountered in hospital and tertiary care settings. Tertiary care is characterized by subspecialized and highly technical ‘‘rescue’’ medicine. There has been much less emphasis on the ethically significant nature of primary care practice. This chapter examines ethics in the particular setting of primary care, focusing on the ethical content of primary care practice and offering some guidance when such issues are encountered.

Why is primary care ethics important?

Ethical issues in primary care are important both because they are frequent and because they can affect the quality of care. Although precise estimates are unavailable, the prevalence of ethical issues is high in the primary care setting, in part because that is where most patients receive most of their healthcare. The overwhelming majority of healthcare encounters take place in clinicians’ offices. For patients aged 65 and older, office visits occur 20 times more frequently than hospitalizations; in childhood, there are 40 to 60 office visits per hospitalization (Fryer et al., 2003).

Moreover, ethical issues are commonplace in primary care office visits. While there are few studies on the nature and prevalence of ethical issues in the outpatient clinic, Connelly and Dalle Mura (1988) reported that, in one outpatient office practice, ethical problems were present for 30% of the patients and in 21% of the office visits. The most common ethical problems for the patients were costs of care (11.1%), psychological factors that influence preferences (9.6%), competence and capacity to choose (7.1%), refusal of treatment (6.4%), informed consent (5.7%), and confidentiality (3.2%). Ethical problems were more common in patients over 60 years of age.

Consequently, primary care clinicians face a multitude of ethical issues every day. While many of the ethical issues raised in tertiary care may

involve intense and dramatic choices, there is usually a structure, such as a hospital ethics committee, to assist the clinician in analyzing and resolving issues. However, in the outpatient setting, such structures are unlikely to be available and clinicians may be more isolated. Therefore, in order to meet the overriding ethical obligation to deliver appropriate care to patients, it is essential for clinicians to understand the ethical issues that arise in this setting and to develop a sensible approach to addressing them.

How should clinicians approach primary care ethics in practice?

Towards preventive ethics in primary care

Preventive ethics necessitates anticipating the ethical issues common in primary care and promoting clinic practices and standards that help to minimize avoidable problems (Forrow et al., 1993; McCullough, 1998). The defining characteristics of primary care (accessible, comprehensive, patientcentered, and continuous) suggest opportunities for preventive ethics. In many instances, policy and legal structures exist in this regard. For example, while primary care clinicians strive to offer patientcentered care that reflects patients’ desires and values, patients sometimes make requests that are inappropriate. Professional standards and clinical guidelines help guide the clinician in properly responding to many requests for unreasonable care (Brett, 2000).

In addition, continuity of care stresses the importance of maintaining a therapeutic clinician– patient relationship. There are circumstances, however, in which this relationship becomes ineffective or detrimental and the clinician must find a means to end the relationship. The ethical guidelines for ending a doctor–patient relationship usually center on avoiding abandonment and ensuring continuity of care with another provider (American College of Physicians, 2005). Professional societies may offer specific legal guidelines (American

Accessible care Preserving openness to all patients when some

requests for treatment may not fit within the clinician’s own moral boundaries

Abortion; confidential services for adolescents

Requests for futile care, non-standard therapies, or inappropriate care; non-adherence with care plans; identifying an appropriate proxy

Inappropriate requests; requests for excessive care; conflicts of interest related to billing and referrals

Non-therapeutic clinician– patient relationships; problems with respect for boundaries between clinician and patient; unreasonable demands on clinician

Describe clinic and clinicians’ availability, expertise, and limits on the provision of care. Make services and limits clear to affected patients and families early in the relationship. Identify alternative sources of care and provide this information when appropriate

Define and help patients to understand the focus and limits of the clinician’s duty to provide care. Identify appropriate surrogates early in the course of care

Establish a policy of honest communication with both patients and insurers. Deny requests to falsify reports. Advocate politically for necessary care. Use the model of informed decision making to help patients to understand economic constraints related to managed care. Develop and maintain ethically defensible business practices

Develop relationships with other local practices should patients need to be transferred. Make boundaries clear and keep them. Discuss problems with patients and enlist their help in resolving the conflicts

478M. Moon, M. Hughes, and J. Sugarman

Responding to ethical issues in primary care

Despite the best preventive efforts, ethical issues will arise and a systematic approach to responding to them is necessary. The complex nature of primary care can make it difficult to define a clear and consistent process for managing ethical conflicts. In many situations, using the systematic approach proposed by Jonsen et al. (2002) provides a reasonable structure for analysis. Specifically, they suggest that complex ethics cases be analyzed in terms of four key questions. What are the medical facts affecting the dilemma? What are the patient’s preferences? What impact will a decision have on the patient’s quality of life? What are the other contextual features (including patients’ values, family issues, legal issues) that affect the decision?

Establishing the medical facts around a case that involves difficult ethical issues is very effective in helping to identify the range of reasonable ethical options. Making sure that all parties involved share an understanding of the relevant medical features can often resolve or at least minimize the extent of the conflict. Once the medical aspects of an issue are clear, the patients’ preferences are explored. The clinician can bring the ethical issue to the patient, explain the nature of the conflict, and ask the patient for guidance on the range of possibilities. When primary care has been comprehensive and continuous, the clinician is in an excellent position to understand the multiple dimensions of patients’ preferences, including the influence of personal history, family, and community. Although always valid, family and community influences can be overwhelming and the clinician may have to work to protect patients’ autonomous decisions about preferences.

This combination of clarifying the medical facts and helping the patient to define preferences is the key to resolving most conflicts. The next step is to identify the impact of possible choices on the patient’s quality of life. Primary care clinicians often have unique insight into the quality of life for their patients, addressing both long-term knowledge of the patient’s life circumstances and awareness

of the patient’s social and physical environment. Finally, other external factors that affect an ethical conflict should be considered. These include legal questions, family needs and values that may be different from the patient’s values, community standards and constraints, resource issues, and other issues that may limit or influence the feasibility of morally acceptable options.

This method works well as a means to structure the necessary information about an ethical issue in a logical and consistent manner. Many cases can be resolved just by sorting and arranging the relevant ideas and working with the patient to share understanding. For persistent problems, clinicians can seek advice from neutral colleagues or local professional organizations.

The cases

Ms. G presents a good example of the value of preventive ethics. Most jurisdictions allow a sexually active teen to request and receive confidential care for sexually transmitted diseases, pregnancy, as well as psychiatric services. Adolescent access to confidential contraceptive services is also common. At the same time, there is substantial variation in rules regarding a clinician’s option to inform parents when it is deemed to be in the best interest of the adolescent. Furthermore, clinicians are not always bound to provide confidential care to adolescents, even when legally available. Regardless, it would be prudent for the clinic to develop and present a very clear policy about confidential adolescent visits. A clinician who is not comfortable providing confidential care to teens can make that clear and redirect teen patients to a local free clinic or some other provider. In Ms. G’s case, the medical facts are clear. The patient’s preferences are likewise clearly stated, although the clinician can revisit the patient’s request for confidential care, particularly to identify her concerns. Why is she afraid to discuss this with her parents? Is there any history of violence or abuse from a parent, sibling, relative, neighbor, or other person?

Was the sexual experience consensual? Are there older siblings or other adults who can help? Would it be helpful if the clinician presented the problem to her parents? Quality of life issues are also important. If the patient is pregnant, what are her goals and to whom can she turn for help and support? The contextual factors at play may involve the position of this teen in her family and community, the physician’s own values with regard to contraception and adolescent sexuality, and the legal issues around providing care to minors. If the clinic offers confidential care to teens, it seems fair to make sure that parents are apprised of this policy early in the course of care. In this case, there is no explicit information regarding whether the clinic had a prior policy regarding these issues. If it did not have, and make available, a policy directing sexually active teens elsewhere for family planning care, the patient can reasonably expect to receive care at this clinic. It follows that the clinician is bound to respond personally to the current crisis even if he is uncomfortable providing confidential care. Assuming this is the case, if the clinician is unsuccessful in counseling Ms. G to share her problems with her family, it may be necessary for him to provide confidential care initially while continuing counseling. If necessary, the clinician may need to find another local clinic that has an established practice of confidential family planning services.

The case of Mr. H, involving non-adherence to medical therapy, is a common and perplexing ethical issue that may pit the ethical principle of respect for autonomy against beneficence. There are no simple methods to avoid the ethical challenges of non-adherence, nor are there simple responses. The medical facts are reasonably clear; Mr. H has a significant history that puts him at risk for stroke, a condition that he wants to avoid. Medications are generally helpful, although cannot guarantee favorable results, as Mr. H has established. The clinician should ensure that the patient understands the potential benefits of medication as well as the risks of stroke given his history. Careful discussion of side effects that may be troubling

Mr. H should be part of the discussion with him. There may be other concerns that Mr. H has not raised, such as the cost of the medications or his use of complementary medications. Alternatively, he may still be coming to terms with his mother’s illness and needs an opportunity to reflect on her disability and what caused it. The clinician may need to revisit this discussion repeatedly to elicit all relevant issues, since the patient’s preferences are not very clear in this picture. Mr. H refuses medications but works hard to stay healthy. He has important experience with the aftermath of a stroke. His non-adherence seems in conflict with his other behaviors. It is likely that there are other factors affecting his behavior. There may be important quality of life concerns related to medication use. Contextual factors are notable; Mr. H’s family responsibilities are weighty and may be causing anxiety. One of the most well-recognized benefits of primary care is its focus on a long-term relationship between clinician and patient. The clinician can revisit Mr. H’s non-adherence over time, supporting his efforts at maintaining health while continuing to look for acceptable medical therapies.

REFERENCES

American College of Physicians (2005). Ethics Manual, 5th edn. Philadelphia, PA: American College of Physicians (www.acponline.org/ethics/ethicman.htm#init) accessed 29 April 2006.

American Medical Association (2003). Policy E-8.115: Termination of the Physician Patient Relationship. Chicago, IL: American Medical Association (www.ama– assn.org/ama/pub/category/8496.html) accessed 29 April 2006.

Brett, A. (2000). Inappropriate requests for treatment and tests. In 20 Common Problems: Ethics in Primary Care, ed. J. Sugarman. New York: McGraw-Hill Press, pp. 3–11.

College of Physicians and Surgeons of Ontario (2000).

Policy 4–0: Ending the Physician Patient Relationship. Ontario: College of Physicians and Surgeons (www.cpso. on.ca/Policies/ending.htm) accessed 29 April 2006.

Connelly, J. and Dalle Mura, S. (1988). Ethical problems in the medical office. JAMA 260: 812–15.

Forrow, L., Arnold, R., and Parker, L. (1993). Preventive ethics: expanding the horizons of clinical ethics. J Clin Ethics 4: 287–94.

Fryer, G. E., Green, L. A., Dovey, S. M., Yean, B. P., and Phillips, L. D. (2003). Variation in the ecology of medical care. Ann Family Med 1:81–9.

Jonsen, A. R., Siegler, M., and Winslade, W. (2002). Clinical Ethics: A Practical Approach to Ethical Decisions in Clinical Medicine, 5th edn. New York: McGraw-Hill.

McCullough, L. (1998). Preventive ethics, managed practice and the hospital ethics committee as a resource for physician executives. HEC Forum 10: 136–51.

Rogers, W. and Braunack-Mayer, A. (2004). Practical Ethics for General Practice. New York: Oxford University Press, p. 3.

Starfield, B. (1998). Primary Care: Balancing Health Needs, Services, and Technology, 2nd edn, New York: Oxford University Press.

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.

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).

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.

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 postexposure 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.