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When Is Risk Stratification by Race or Ethnicity Justified in Medical Care?

Chin, Marshall H. MD, MPH; Humikowski, Catherine A.

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Author Information

Dr. Chin is associate professor of medicine, Section of General Internal Medicine, Department of Medicine, and is a Robert Wood Johnson Foundation Generalist Physician Faculty Scholar; Ms. Humikowski is a medical student; both at the Pritzker School of Medicine; University of Chicago, Chicago, Illinois.

Correspondence and requests for reprints should be addressed to Dr. Chin, University of Chicago, 5841 South Maryland Avenue, MC 2007, Chicago, IL 60637; telephone: (773) 702-4769; fax: (773) 834-2238; e-mail: 〈mchin@medicine.bsd.uchicago.edu〉.

An earlier version of this paper was presented in part at the annual meeting of the Society of General Internal Medicine, May 3, 2001, San Diego, California.

Monica Lypson, MD, and Eric Whitaker, MD, MPH, taught a seminar on issues of race, ethnicity, and socioeconomic status with Dr. Chin, and the authors thank them and the medical residents of the University of Chicago for their insights and open discussion of these difficult issues. The views expressed in this paper are those of the authors and not necessarily theirs.

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Abstract

Issues of race and ethnicity have been controversial in both clinical care and medical education. In daily practice, many physicians struggle to be culturally competent and avoid racial stereotyping. One educational development that makes this goal more complex is the rise of clinical epidemiology and Bayesian thinking. These population-based, probabilistic approaches to medicine help guide the diagnostic and therapeutic pathways for patients, and are foundations of the evidence-based medicine movement. Can Bayesian thinking be applied effectively to issues of race and ethnicity in medical care, or are the dangers of prejudicial stereotyping too great? The authors draw upon lessons from recent cases of racial profiling, and develop a conceptual framework for thinking about ethnicity as a clinical tool. In their typology of ethnicity as a proxy, they argue that the costs of using ethnicity as a proxy for socioeconomic status and behavior are too high, but that ethnicity may appropriately be used as an initial proxy for history, language, culture, and health beliefs. They discuss their approach within the context of new curricula in cultural competence, and argue that viewing the patient within a wider cultural setting can help guide the initial clinical approach, but individualized care is mandatory. Also, physicians must remain sensitive to the changing nature of cultural norms; thus lifelong learning and flexibility are necessary.

Race and ethnicity have been among the most controversial and divisive issues in American society and the practice of medicine. An extensive recent literature documents racial disparities in the provision of care, at least part of which is driven by differences in physicians' practice styles.1,2,3,4,5 Mistrust by minority communities of academic institutions and the medical establishment, perhaps epitomized by the fallout from the Tuskegee experiment in which African American men with syphilis were untreated for years, is an unfortunate legacy.6,7 The current approach to race and ethnicity in the medical education community consists of two somewhat conflicting views. On one hand, programs teaching “cultural competence” have become increasingly popular in recognition of the diversity of American patient populations.8 Conversely, perhaps because of fear of racial stereotyping, others advocate a color-blind policy. For example, proponents argue that race and ethnicity should not be part of the patient's identification during presentation of a case, because they are irrelevant to the care of the individual.

Experienced clinicians use the tools of clinical epidemiology and Bayesian thinking to risk-stratify patients by their demographic and clinical characteristics.9 Based upon his or her traits, a patient has a prior probability of a certain diagnosis, which can be revised as more information becomes available. For example, using a non-racial case, an otherwise healthy 20-year-old man with chest pain has a lower likelihood of coronary artery disease than does a 70-year-old woman with a history of myocardial infarction who also has chest pain. In these examples, the patient's age and cardiac history affect the degree to which coronary artery disease should be considered in the diagnostic and therapeutic plans. Analogously, can race and/or ethnicity be used as a beneficial tool of epidemiologic clinical thinking, or are the dangers of profiling and stereotyping too great?10

In this article, we explore the slippery slope of using race and ethnicity as clinical tools; we do so by combining clinical thinking with views from the wider legal and moral debate over racial profiling. The basic question is whether there are circumstances in which it is justified to differentiate by race or ethnicity. Population data regarding race may be useful for policy purposes, such as indicating where there are racial disparities in care that might lessen with intervention.11 However, it is more complex to decide whether or not racial differentiation is beneficial in the care of individual patients.

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“RACE” AND “ETHNICITY”

“Race” is a vague, imprecise concept whose biologic significance is relatively uncommon or else largely discredited,12,13,14,15 although the term is still used administratively and in the medical research literature.16,17 Dictionaries have many definitions of “race,” some of which specifically state that race denotes “a more or less distinct group by genetically transmitted physical characteristics.”18 In practice, race has largely become a social and political construct referring to a group of people with presumably shared characteristics such as skin color, history, and treatment by society and the law. The more relevant and precise concept clinically is “ethnicity,” defined as “pertaining to a social group within a cultural and social system that claims or is accorded special status on the basis of complex, often variable traits including religious, linguistic, ancestral, or physical characteristics.”18 We concentrate on the concept of ethnicity here, although there is overlap with the socially constructed definition of race. When we use the term “race” subsequently in this article, we are referring to race as a socio-political construct. Debate over these complex concepts and issues will benefit from a clearer definition of the ways that ethnicity and race are used as distinguishing devices.19 We argue that individualized care is mandatory, but that initial perceptions of patients within a broader cultural context can be useful.

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A CASE TO PONDER

Before we present any more of our thinking on the issues outlined above, we briefly outline the case of a patient whom one of us helped care for, giving only enough information to indicate the question the medical team faced. We have withheld the medical team's “answer” until much later in the article, to encourage readers to ponder how they would approach the patient, without any bias from our views.

Recently one of us (MHC) cared for an older African American man from the south side of Chicago with new-onset end-stage renal disease. Upon admission to the hospital he was given emergency dialysis treatment, but subsequently he refused further hemodialysis despite demonstrating mental competence. The medical team had to ask themselves: Should our approach to this patient be different from what it would be if he were an older Caucasian patient?

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RACIAL PROFILING

Controversy over racial profiling has been prominently featured in national news over the past year. Racial profiling is the legal, political, or economic discrimination of individuals based solely on race. In essence, race is used as a proxy for less observable, often negative, characteristics. Recent examples include allegations of arresting African American men for “driving while black,”20,21 focusing on Arabs and Latinos for random searches at airport security checkpoints because of fear they may be terrorists or drug couriers,22 and accusations that Wen Ho Lee was unfairly singled out for special investigation in the Los Alamos Chinese nuclear weapons spy case because he is Chinese American.23 One of the most extreme cases of racial profiling, violating the individual civil rights of an entire group, was the forced confinement of Japanese Americans in internment camps as a national security measure during World War II, despite no evidence that Japanese Americans were more likely to perform acts of espionage or sabotage.24

In each of these examples, race was an alleged substitute for potential dangerousness or criminal activity. Proponents defend this practice by claiming that if statistics indicate that people of certain races or ethnic backgrounds are more likely to commit crimes, then it is good law enforcement or common sense to target those individuals. Opponents of racial profiling assert that such reasoning perpetuates a trouble-some mythical circle in which more minorities seem to fit criminal profiles because law enforcement officials preferentially arrest minorities. Additionally, many argue that racial profiling directly violates individual civil rights and breeds fear and mistrust among minorities.25,26

Clearly, the effects of profiling can be devastating. But what should we do when it appears that certain populations in particular areas may in fact be more likely to fit a given criminal profile? For example, consider Jesse Jackson's widely quoted comment: “There is nothing more painful to me at this stage in my life than to walk down the street and hear footsteps and start thinking about robbery—then look around and see somebody white and feel relieved.”27

Racial profiling cases from the civil rights and legal realms exemplify the potential dangers of discriminating primarily by race. However, on a daily basis, we are required to make discriminating decisions based on proxy traits.26 For example, employers scanning resumes believe that a college education probably makes someone a more qualified applicant for an advanced technical job than does high school training only, and many patients assume that a board-certified physician is more likely to be competent than a doctor without this distinction.

Thus, judicious discrimination per se is a necessary and, in fact, desirable activity. In the medical realm, the challenge is how to recognize and separate harmful prejudicial racial practices from appropriately sensitive clinical care.

Whether we like it or not, race currently matters in medicine. The attitudes and beliefs that both patients and doctors bring to their encounters28,29,30 and the subsequent doctor-patient communication or miscommunication reflect each party's history and culture.31,32 While it is not necessary to be an African American physician to provide excellent care to African Americans,33 numerous studies indicate that race frequently affects the doctor-patient interaction. For example, African Americans report receiving less information from their physicians than white patients do,34,35 and rate their doctor visits as less participatory.36 Minority patients are less satisfied with their physicians and have less trust in their doctors than Caucasian patients do.37 In addition, surveys indicate that African Americans and Hispanics with race-concordant physicians perceive better care than do those with race-discordant doctors.38 Patients in race-concordant doctor-patient relationships also rate visits as more participatory than do patients with race-discordant relationships.36 Consistent with these findings, minority patients are more likely than are Caucasians to choose minority physicians.39 Many African American and Hispanic American patients who select physicians from their own races report doing so because of personal preferences and language rather than solely on the basis of geographic availability.40

Racial disparities in health care raise troubling questions, but treating race as a clinical variable could be of benefit. Ethically, initial stratification by ethnicity differs from the classic racial profiling cases of the legal field, such as random searches of minorities at airports, in that medical profiling is designed for the individual's benefit. In law enforcement cases, racial profiling generally places public welfare above individual rights, with problematic philosophical and practical results.25

However, the potential pitfalls of initial ethnic stratification are less in medical cases, since the individual's welfare is paramount, so long as individualization of care is rapid. Clearly, though, vigilance is required, as medicine has historically not been immune to either overt or subconscious racism.1,2,3,4,5,6,7 So, can we devise a conceptual framework that provides guidance on when it is justified to use race and ethnicity in risk stratification and clinical care, and when the dangers of civil rights violations and societal stereotypes are too great to do so?

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A TYPOLOGY OF RACIAL AND ETHNIC ISSUES PERTAINING TO MEDICAL MANAGEMENT

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Biology

Some issues of race and clinical management are biologic.41 For example, persons of African ancestry have higher rates of hemoglobin S mutations, resulting in higher rates of sickle-cell anemia. Thus, sickle-cell disease is higher in the differential diagnosis of anemia in an African American patient. Or, Ashkenazi Jewish populations have higher rates of Tay-Sachs disease and the breast-cancer-associated BRCA1 and BRCA2 mutations.42,43 It is important to stress that examples of biologic links to race are rare,44 as intra-race and inter-race genetic variations are comparable.45

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Mythology

Some beliefs are mythical and clearly should not be accepted in clinical thinking. For example, regarding sexual history, the prowess of the African American man and the image of the Asian American woman as a submissive sexual tool are incorrect perceptions partially fueled by media stereotypes.46,47,48

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Slippery slope—race and ethnicity as proxies

However, between the extreme anchoring points of biology and mythology is a slippery slope on which race and ethnicity can be either useful tools or potentially dangerous devices. Ethnicity can be a proxy for a local epidemiology of risk factors, health beliefs, culture, language, and history. Indeed, ethnicity may have a statistical association with a variety of factors. Therefore, an approach to the individual patient can benefit from understanding context and what ethnicity is a proxy for. The potential benefit of using ethnicity as a tool is to aid an individual patient by making medical care better tailored to that patient. The potential detriments are reinforcement and perpetuation of partial myths, encouragement of undesirable behaviors by creating negative expectations (e.g., the nonadherent ethnic patient becomes a self-fulfilling prophecy if the provider expects nonadherence), and avoidance of addressing the underlying individual factors.26 In our typology of ethnicity as a proxy we argue that the costs of using ethnicity as a proxy for socioeconomic status and behavior are too high, whereas ethnicity may appropriately be used as an initial proxy for history, language, culture, and health beliefs, so long as individualization of care is rapid.

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Socioeconomic status

Ethnicity frequently becomes defacto a proxy for socioeconomic status in the research literature, since many databases do not have extensive social data.17 In the clinical setting the clinician can directly question the patient, so ethnicity has little role as a proxy. The physician should ask directly about such factors as family, work, insurance coverage, and ability to pay for medications, as this is useful information for any patient.

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Behavior

Ethnicity is a dangerous proxy for behavior. Imagine an inner-city hospital in which most of the women with pelvic inflammatory disease are minorities. Should the next minority woman who presents with abdominal pain be presumed to have gonorrhea or chlamydia infection from high-risk sexual activity? Like socioeconomic status, behavior is best determined through direct questioning and observation. Pelvic inflammatory disease is on the differential diagnosis of any woman with abdominal pain, and thus all of these patients should be questioned about sexual activity. Moreover, premature closure on the diagnosis of pelvic inflammatory disease could make clinicians miss other serious causes of abdominal pain.

Ethnic associations with socioeconomic status and behavior frequently have stigmatizing connotations, and the potential for misuse is great. In addition, information about the underlying factors is often readily obtainable. Thus, ethnicity as a proxy in these circumstances is not justified. In contrast, ethnicity as a proxy for history, language, culture, and health beliefs usually does not have these highly charged negative meanings. Also, a priori awareness of these latter factors can be necessary for a clinician to be maximally effective during the patient encounter.

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History

An awareness of basic ethnic history is useful. Granted, one cannot be an expert in the history of every ethnic group. Still, it is worthwhile knowing, for example, that a Vietnamese patient who immigrated in the 1980s may have experienced violence and great hardship, or an older African American patient who lived in the Jim Crow era has lived a different life than has a teenaged African American patient. Thus, ethnicity raises flags for these factors' possibly being relevant for a patient's care. Physicians should know the basic histories of ethnic groups they see commonly, and be able to recognize when they need to learn more about the background of a particular patient.

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Language

Basic language usages and health terms have regional ethnic variations. For example, physicians practicing on the south side of Chicago need to know that “high blood” means “high blood pressure,” and coughing up “cold” signifies the expectoration of sputum in some African American patients. Effective communication requires a common language, and ethnicity can be a marker for potential instances where “translation” is needed.

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Culture

Recognition of ethnic customs can help avoid misunderstandings and feelings of disrespect. For example, in some Middle Eastern and Asian cultures, men may tend to speak for the women.49 In contrast, sometimes African American families have a predominantly matriarchal hierarchy.50 Certainly the circumstances of the individual family and patient need to be ascertained to avoid the pitfalls of stereotyping, but knowledge of some general customs can help the physician communicate judiciously and cautiously until the preferred style is clear.

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Health beliefs

An extensive social science literature documents the importance of understanding patients' health beliefs, patients' concepts of illness, and their constructions of clinical phenomena.51 In addition, attitudes toward established health institutions and organizations representing authority can be affected by local beliefs within an ethnic community. Thus, while some beliefs may seem inexplicable to many medical practitioners, those beliefs have an internal logic within the ethnic communities that hold them, such as the view within some elements of the African American community that the human immunodeficiency virus was created by the government to exterminate the black race.52 Such beliefs must be acknowledged and addressed if they have an impact upon a patient's attitude towards his or her medical care.

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CULTURAL COMPETENCE

Increasing appreciation for how ethnic issues affect medical care has helped spur the growth of educational programs in cultural competence. In its Cultural Competence Compendium, the American Medical Association (AMA) defines culture as “any group of people who share experiences, language, and values that permit them to communicate knowledge not shared by those outside the culture.”8 The AMA further notes that “culturally competent physicians are able to provide patient-centered care by adjusting their attitudes and behaviors to account for the impact of emotional, cultural, social, and psychological issues on the main biomedical ailment.”8 Cultural competence curricula attempt to prepare students to care for diverse patient populations. While some educators have described traits they believe are common to an ethnic group, the predominant approach to cultural competence in medical education today teaches a consideration of individual patients as opposed to a rigid checklist of ethnic traits. For example, providers are advised to inquire about the meaning of illness to their patients, and their social contexts, such as family, literacy, and finances.53,54

However, given that physicians have limited time and energy, background history and context can be helpful in guiding inquiry. An analogy is that of the local epidemiology of antibiotic resistance. The principles of antimicrobial therapy are the same everywhere, but the specific patterns of antimicrobial resistance differ, and thus antibiotic selection must be tailored to the individual patient within the context of the local resistance strains. Similarly, while individual patients may or may not fit a stereotype, on a population level the cultural characteristics of, for example, the Cuban American population of Miami differ in some ways than those of the Puerto Rican community in New York City. Thus, as a starting point, it could be useful to know some of the common cultural beliefs of these and other groups, such as the Hmong in Fresno, California,55 or the Arab American community in Detroit, before caring for these patients. Clearly, quick individualization of care is necessary, as many patients may not fit a “common” description of a culture, because of issues such as their generation of immigration, socioeconomic status, and degree of secularization.

Practically, training materials that emphasize a culturally cognizant but individual-specific approach may be particularly relevant for the care of ethnic minority patients. Certainly a culturally competent approach should be used for all patients, whether affluent seventh-generation Caucasians or poor, recently arrived immigrant minorities. However, at present most physicians are still Caucasian men for whom minority cultures were not present in the settings in which they were raised.56 Thus, the inherent cultural gap may be harder for the majority of physicians to cross to effectively communicate with most minority patients than to communicate with most Caucasians. This situation might change if the physician workforce were to become more diverse, but increased enrollment of underrepresented minorities in medical schools has been stymied recently.57 Of note, Caucasians are not a monolithic group, and cultural issues among ethnic minorities such as Polish Americans or Croatian immigrants may be critical.

In any case, given the increasingly multicultural nature of American society, cultural competence is likely to be an important goal for many more years. Some people may argue that the individualization of care is most important, and that cultural contexts for patients carry the danger of stereotypes. Undoubtedly, it is a slippery slope.58 Ethnicity can be misused and abused, and cultural norms evolve and change over time. However, the sensitive physician will attempt to use all tools at his or her disposal to help patients. Indeed, it would be foolhardy not to take into account common beliefs and cultural issues in a community.

Our conceptual framework of race and ethnicity also has implications for the way evidence-based medicine and certain managed care concepts are taught. Evidence-based medicine applies data from populations to individuals. Managed care also has a population perspective, theoretically aiming to provide high-value, cost-effective care to a population of patients. Increasingly, medical students and residents are exposed to these concepts, but often they are taught in isolated courses in epidemiology, critical appraisal of the medical literature, or the health care system. Similarly, teaching of cultural competence is often relegated to courses in cultural sensitivity or provider—patient communication. These course divisions are artificial and could minimize discussion of clashes in the population and individual views of race and ethnicity. We argue for a more synthetic educational approach to considering race and ethnicity in which the strengths and weaknesses of population-based epidemiologic methods are viewed within the context of individuals. Such a goal requires innovative educational programs that provide forums to discuss the difficult issues involved in thinking about race and ethnicity from both population and individual perspectives; it also requires teachers trained in these different areas. An integrated curriculum that draws upon a faculty team with the requisite skills in clinical epidemiology, communication, ethics, cultural competence, and public policy might be best equipped to introduce students to these issues. Master clinicians integrate these perspectives; likewise, logically designed curricula should do so.

Now that we have presented the conceptual framework for the use of race and ethnicity in patient care, we return to the case of the older African American man refusing he-modialysis and describe the medical term's response.

The team had many comprehensive conversations with him about his life and medical condition, but we addressed issues of distrust of physicians and the medical system in more detail than we would have if he had been a Caucasian patient. Ultimately he agreed to treatment, but his initial refusal probably had more to do with his own independent personality style than any ethnic, cultural, or historical issues. Whereas we guessed that his decision might be partially based on historical mistrust of the medical system by African Americans, his reasons were actually more personal and individual.

If a similar patient were admitted to the hospital, we would approach him or her in the same manner—individualizing care but cognizant of the local cultural context. Thus, a formal decision analyst might say that we are using Bayesian analysis but think there are weak prior probabilities of the association of ethnicity with other factors, and thus need to do an in-depth interview of the patient.

Improving skills in cultural competence will require development of additional skills in doctor—patient communication as well as an appreciation for the patient's cultural beliefs and local milieu.59 It also mandates that physicians remain sensitive to the changing nature of cultural norms, and thus lifelong learning and flexibility are necessary.

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