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1 Introduction and Literature Review Despite steady improvement in the overall health of the U.S. popula- tion, racial and ethnic minorities, with few exceptions, experience higher rates of morbidity and mortality than non-minorities. African Americans, for example, experience the highest rates of mortality from heart disease, cancer, cerebrovascular disease, and HIV/AIDS than any other U.S. racial or ethnic group. American Indians disproportionately die from diabetes, liver disease and cirrhosis, and unintentional injuries. Hispanic Ameri- cans are almost twice as likely as non-Hispanic whites to die from diabe- tes. In addition, some Asian-American subpopulations experience rates of stomach, liver, and cervical cancers that are well above national aver- ages. The reasons for these health status disparities are complex and poorly understood, but may largely reflect socioeconomic differences, dif- ferences in health-related risk factors, environmental degradation, and direct and indirect consequences of discrimination (Williams, 1999). Differences in access to healthcare are also likely to play a role in these health disparities. Hispanics, Asian Americans, American Indians and Alaska Natives, and African Americans are less likely than whites to have health insurance, have more difficulty getting healthcare, and have fewer choices in where to receive care. Hispanic and African-American patients are also more likely to receive care in hospital emergency rooms, and are less likely than whites to have a regular primary care provider (Collins, Hall, and Neuhaus, 1999). Concern is growing, however, that even at equivalent levels of access to care, racial and ethnic minorities experience a lower quality of health services and are less likely to receive even routine medical procedures 29

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30 UNEQUAL TREATMENT than white Americans. For example, relative to whites, African Ameri- cans and Hispanics are less likely to receive appropriate cardiac medica- tion (e.g., thrombolytic therapy, aspirin and beta blockers) or to undergo coronary artery bypass surgery, even when variations in such factors as insurance status, income, age, co-morbid conditions, and symptom ex- pression are taken into account (Ayanian et al., 1993; Hannan et al., 1999; Ramsey et al., 1997; Johnson et al., 1993; Canto et al., 2000). African Ameri- cans with end-stage renal disease are less likely to receive peritoneal di- alysis and kidney transplantation (Kasiske, London, and Ellison, 1998; Barker-Cummings, McClellan, Soucie, and Krisher, 1995; Gaylin et al., 1993), and African-American and Hispanic patients with bone fractures seen in hospital emergency departments are less likely than whites to re- ceive analgesia (Todd et al., 2000; Todd, Samaroo, and Hoffman, 1993). In terms of quality of care, a recent study of Medicare patients revealed that African-American patients with congestive heart failure or pneumonia received poorer quality care than whites, using explicit process criteria and implicit review by physicians (Ayanian, Weissman, Chasen-Taber, and Epstein, 1999). Further, these differences are associated with greater mortality among African-American patients (Peterson et al., 1997). STUDY CHARGE AND COMMITTEE ASSUMPTIONS These disparities prompted Congress in 1999 to request an Institute of Medicine (IOM) study to assess disparities in the kinds and quality of healthcare received by U.S. racial and ethnic minorities and non-minori- ties. Specifically, Congress requested that the IOM: • Assess the extent of racial and ethnic differences in healthcare that are not otherwise attributable to known factors such as access to care (e.g., ability to pay or insurance coverage); • Evaluate potential sources of racial and ethnic disparities in health- care, including the role of bias, discrimination, and stereotyping at the individual (provider and patient), institutional, and health system levels; and • Provide recommendations regarding interventions to eliminate healthcare disparities. In its interpretation of the charge, the study committee assumes re- sponsibility for assessing variation in the quality of healthcare services provided to individuals of different racial and ethnic backgrounds, inde- pendently of patients’ insurance status, education, income, or other fac- tors that are known to affect access to care. This is a somewhat artificial and difficult distinction, as many access-related factors, such as the type

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31 INTRODUCTION AND LITERATURE REVIEW of health insurance coverage that healthcare consumers purchase or are provided, as well as their level of education and other unmeasured as- pects of socioeconomic status (e.g., assertiveness in seeking care) signifi- cantly affect the quality and intensity of healthcare that they receive, and are highly correlated with race and ethnicity. The relationship of these variables to healthcare quality is therefore highlighted where appropriate in this report. For purposes of addressing the study charge, however, the committee’s focus extends only to the direct and indirect effects of race and ethnicity in the process, structure, and outcomes of healthcare. Further, the committee assumes that healthcare refers to the continuum of services provided in traditional healthcare settings—including public and private clinics, hospitals, community health centers, nursing homes, and other healthcare facilities—as well as home-based care. These in- clude services provided by a range of healthcare professionals, including physicians, nurses, physician assistants, psychologists, and other licensed professionals. The term healthcare services refers to the provision of pre- ventive, diagnostic, rehabilitative and/or therapeutic medical or health services to individuals or populations. Quality of care refers to the degree to which health services for individuals and populations increase the like- lihood of desired health outcomes and are consistent with current profes- sional knowledge. These definitions, and their interrelationship, are best summarized in the 1999 IOM report, Measuring the Quality of Health Care: The IOM stated . . . that “quality of care is the degree to which health services for individuals and populations increase the likelihood of de- sired health outcomes and are consistent with current professional knowledge” (IOM, 1990, p. 21). This definition has been widely accepted and has proven to be a robust and useful reference in the formulation of practical approaches to quality assessment and improvement (Blumenthal, 1996). Several ideas in this definition deserve elaboration. The term health services refers to a wide array of services that affect health, including those for physical and mental illnesses. Furthermore, the defi- nition applies to many types of healthcare practitioners (physicians, nurses, and various other health professionals) and to all settings of care (from hospitals and nursing homes to physicians’ offices, community sites, and even private homes). . . . The inclusion in the definition of both populations and individuals draws attention to the different perspectives that need to be addressed. On the one hand, there is concern with the quality of care that individual organi- zations, health plans, and clinicians deliver. On the other hand, attention must be paid to the quality of care across the entire system. In particular, one must ask whether all parts of the population have access to needed and appropriate services, whether services meet or exceed their expecta- tions, and whether their health status is improving. That focus embraces all groups, whether or not they have access to care and whether they are

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32 UNEQUAL TREATMENT defined by cultural heritage, sociodemographic characteristics, geogra- phy (e.g., a state or a region), or diagnosis. It recognizes that such indi- viduals will include the most vulnerable, whether the source of vulner- ability is economic, the rarity or severity of the health problem, physical frailty, or physical or emotional impairment. (Institute of Medicine, 1999a; emphasis in text). The study committee defines disparities in healthcare as racial or eth- nic differences in the quality of healthcare that are not due to access-re- lated factors or clinical needs, preferences,1 and appropriateness of inter- vention (Figure 1-1). The committee’s analysis is focused at two levels: 1) the operation of healthcare systems and the legal and regulatory climate in which health systems function; and 2) discrimination at the individual, patient-provider level. Discrimination, as the committee uses the term, refers to differences in care that result from biases, prejudices, stereotyp- ing, and uncertainty in clinical communication and decision-making. It should be emphasized that these definitions are not legal definitions. Dif- ferent sources of federal, state and international law define discrimination in varying ways, some focusing on intent and others emphasizing dispar- ate impact. Finally, in defining racial and ethnic minority groups, the committee uses the definitions provided by the federal Office of Management and Budget in its proposed Revisions to the Standards for the Classification of Federal Data on Race and Ethnicity (Office of Management and Budget, 2001). The revised standards (see Box 1-1) establish five categories for “racial” groups (American Indian or Alaska Native, Asian, Black or African American, Native Hawaiian or other Pacific Islander, and White), and two categories for “ethnic” groups (Hispanic or Latino and Not Hispanic or Latino).2 It should be noted that these definitions have been subject to considerable criticism, including: 1The committee defines patient preferences as patients’ choices regarding healthcare that are based on a full and accurate understanding of treatment options. As discussed in Chap- ter 3 of this report, patients’ understanding of treatment options is often shaped by the quality and content of provider-patient communication, which in turn may be influenced by factors correlated with patients’ and providers’ race, ethnicity, and culture. Patient prefer- ences that are not based on a full and accurate understanding of treatment options may therefore be a source of racial and ethnic disparities in care. The committee recognizes that patients’ preferences and clinicians’ presentation of clinical information and alternatives in- fluence each other, but found separation of the two to be analytically useful. 2Consistent with the OMB classification scheme, the terms “African American” and “black” are used interchangeably throughout this report, as are the terms “Hispanic” and “Latino.”

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33 INTRODUCTION AND LITERATURE REVIEW Clinical Appropriateness and Need Patient Preferences Difference The Operation of Quality of Health Care Healthcare Systems and Non-Minority Legal and Regulatory Climate Disparity Discrimination: Minority Biases, Stereotyping, and Uncertainty FIGURE 1-1 Differences, disparities, and discrimination: Populations with equal access to healthcare. SOURCE: Gomes and McGuire, 2001. • reinforcement of the concept of “race” as reflecting genetic or bio- logic differences between population groups; • failure to reflect the fluid and dynamic nature of sociopolitical iden- tity, and • failure to reflect the way many Americans choose to define them- selves (Institute of Medicine, 1999b). Nonetheless, the committee adopts these racial and ethnic definitions because they are commonly accepted among researchers, and most feder- ally funded research utilizes these terms. Further, as will be noted below, access to and the allocation of healthcare resources differ with striking consistency across these population groups, making them useful in track- ing disparities in care. To summarize, racial and ethnic minorities are less likely than whites to posses health insurance (Collins, Hall, and Neuhaus, 1999), are more likely to be beneficiaries of publicly funded health insurance (e.g., Medic- aid [The Henry J. Kaiser Family Foundation, 2000b]), and even when insured, may face additional barriers to care due to other socioeconomic factors, such as high co-payments, geographic factors (e.g., the relative scarcity of healthcare providers and healthcare facilities in minority com- munities), and insufficient transportation. These access-related factors are likely the most significant barriers to equitable care, and must be addressed as an important first step toward eliminating healthcare disparities. The

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34 UNEQUAL TREATMENT BOX 1-1 Revised Standards for the Classification of Federal Data on Race and Ethnicity Categories for Race: American Indian or Alaska Native. A person having origins in any of the original peoples of North and South America (including Central America), and who maintains tribal affiliation or community attachment. Asian. A person having origins in any of the original peoples of the Far East, Southeast Asia, or the Indian subcontinent including, for example, Cambodia, China, India, Japan, Korea, Malaysia, Pakistan, the Philippine Islands, Thailand, and Vietnam. Black or African American. A person having origins in any of the black racial groups or Africa. Terms such as “Haitian” or “Negro” can be used in addition to “Black or African American.” Native Hawaiian or Other Pacific Islander. A person having origins in any of the original peoples of Hawaii, Guam, Samoa, or other Pacific Islands. White. A person having origins in any of the original peoples of Europe, the Middle East, or North Africa. Categories for Ethnicity: Hispanic or Latino. A person of Cuban, Mexican, Puerto Rican, South or Central American, of other Spanish culture or origin, regardless of race. The term “Spanish origin” can be used in addition to “Hispanic or Latino.” Not Hispanic or Latino. SOURCE: Office of Management and Budget, 2001. committee is asked, however, to assess whether other factors may con- tribute to health-care disparities once these “threshold” factors (i.e., racial and ethnic differences in income, health insurance status, and geography) are held constant, and to specifically address whether bias, discrimination, or stereotyping at the individual, institutional, and health systems levels may explain some part of these disparities. To a great extent, attempts to separate the relative contribution of these factors risks presenting an incomplete picture of the complex interrelationship between racial and ethnic minority status, socioeconomic differences, and discrimination in the United States. For example, as will be discussed in Chapter 2, racial and ethnic housing segregation is a by-product of both historic and con- temporary racism and discrimination, as well as socioeconomic differ- ences (itself the legacy of poorer opportunities for many minority groups). The committee therefore stresses that attempts to “parcel out” access-

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35 INTRODUCTION AND LITERATURE REVIEW related factors from the quality of healthcare for minorities remains an artificial exercise, and that policy solutions must consider the historic and contemporary forces that contribute to differences in access to and quality of healthcare. THE RELATIONSHIP BETWEEN RACIAL AND ETHNIC DISPARITIES IN HEALTH STATUS AND HEALTHCARE The health gap between minority and non-minority Americans has persisted, and in some cases, has increased in recent years. African- American men, for example, experienced an average life expectancy of 61 years in 1960, compared with 67 years for their white male peers; in 1996, this gap increased to 8 years, as white males enjoyed an average life ex- pectancy of 74 years, relative to 66 years for African-American males. American-Indian men in some regions of the country can expect to live only into their mid-fifties. Further, African-American and American-In- dian infant mortality rates remain approximately 2.5 and 1.5 times higher, respectively, than rates for whites (Collins, Hall, and Neuhaus, 1999). As noted above, the reasons for these health status disparities are com- plex. Individual risk factors for poor health are pronounced among many racial and ethnic minorities, yet these risks are confounded by the dispro- portionate representation of minorities in the lower socioeconomic tiers. Moreover, socioeconomic position in and of itself is correlated with health status, independently of individual risk factors, as people in each ascend- ing step along the socioeconomic gradient tend to have better health, even when individual health risk factors are accounted for (Kaplan, Everson, and Lynch, 2000). Cultural factors also play an important role in health disparities; among some immigrant Hispanic populations, for example, birth outcomes have been found to be better than among those of their U.S.-born peers, suggesting that sociocultural risk increases with subse- quent generations living in the United States (Korenbrot and Moss, 2000). Further, environmental health risks, such as degradation, air, water, and soil pollution, and other physical health hazards are more prevalent in low-income racial and ethnic minority communities. These and other risk factors associated with health and poor health illustrate that racial and ethnic disparities in health status largely reflect differences in social, so- cioeconomic, and behavioral risk factors and environmental living condi- tions (House and Williams, 2000). Healthcare is therefore necessary but insufficient in and of itself to redress racial and ethnic disparities in health status (Williams, 1999). A broad and intensive strategy to address socio- economic inequality, concentrated poverty in many racial and ethnic mi- nority communities, inequitable and segregated housing and educational facilities, individual behavioral risk factors, as well as disparate access to

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36 UNEQUAL TREATMENT and use of healthcare services is needed to seriously address racial and ethnic disparities in health status. WHY ARE RACIAL AND ETHNIC DISPARITIES IN HEALTHCARE IMPORTANT? The preceding discussion should not be interpreted as suggesting that racial and ethnic disparities in healthcare are unimportant, either to indi- viduals in need of care or to a society that prides itself on equality of opportunity. To the contrary, disparities in healthcare are problems that have significant implications for health professionals, administrators and policymakers, and healthcare consumers of all backgrounds. For the health professions, racial and ethnic disparities in healthcare pose moral and ethical dilemmas that will be among the most significant challenges of today’s rapidly changing health systems. Increasingly, phy- sicians and other health professionals are faced with a complex set of soci- etal expectations. On one hand, they are expected to adhere to the highest ethical standards of service that mandate fairness and compassion. On the other hand, physicians are placed in the position of serving as manag- ers of vital, yet limited healthcare resources. Their decisions may result in the allocation of more resources to some individuals than to others, re- sulting in the unequal distribution of healthcare across population groups. These challenges occur in the context of increasing financial and bureau- cratic pressures on healthcare providers, which may exacerbate the prob- lem of inequitable care. Yet the public’s trust in the health professions may be irrevocably harmed should the healthcare industry be engaged, even inadvertently, in “social triaging.” It is vitally important to preserve this trust, which is already fragile in many racial and ethnic minority com- munities, as it can significantly affect patients’ willingness to seek care and adhere to treatment regimens. Health professionals and policymakers must also be cognizant of the importance of healthcare as a resource that is tied to social justice, oppor- tunity, and the quality of life for individuals and groups. The productiv- ity of the workforce is closely linked with its health status, yet if some segments of the population, such as racial and ethnic minorities, receive a lower quality and intensity of healthcare, then these groups are further hindered in their efforts to advance economically and professionally. It is therefore important from an egalitarian perspective to expect equal per- formance in healthcare, especially for those disproportionately burdened with poor health. From a public health standpoint, racial and ethnic disparities in healthcare threaten to hamper efforts to improve the nation’s health. As will be discussed in Chapter 3, the United States is becoming increasingly

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37 INTRODUCTION AND LITERATURE REVIEW diverse; while white Americans currently constitute 71% of the popula- tion, by the year 2050 nearly one in two Americans will be a person of color (U.S. Bureau of the Census, 2000). These groups, as noted earlier, experience a poorer overall health status and lower levels of access to heathcare than white Americans, and experience a disproportionate bur- den of chronic and infectious illness. This higher burden of disease and mortality among minorities has profound implications for all Americans, as it results in a less healthy nation and higher costs for health and reha- bilitative care. All members of a community are affected by the poor health status of its least healthy members—infectious diseases, for ex- ample, know no racial/ethnic or socioeconomic boundaries. For this rea- son, the federal Healthy People 2010 initiative has established an overarch- ing goal of eliminating health disparities, noting that “the health of the individual is almost inseparable from the health of the larger community, and . . . the health of every community in every State and territory deter- mines the overall health status of the Nation” (U.S. Department of Health and Human Services, 2000a, p. 15). From an economic standpoint, the costs of inadequate care may have significant implications for overall healthcare expenditures. Poorly man- aged chronic conditions or missed diagnoses can result in avoidable, higher subsequent healthcare costs. For example, inadequately treated and managed diabetes can result in far more expensive complications, such as kidney disorder requiring dialysis or transplantation. To the ex- tent that minority beneficiaries of publicly funded health programs are less likely to receive high quality care, these beneficiaries—as well as the taxpayers that support public healthcare programs—may face higher fu- ture healthcare costs. Further, the problem of racial and ethnic disparities in healthcare poses a significant dilemma for a society that is still wrestling with a legacy of racial discrimination (Byrd and Clayton, this volume). Public opinion polls indicate that the vast majority of Americans abhor any form of racial discrimination and believe that all Americans should—and do—enjoy equal opportunities in accessing educational and job opportunities, as well as healthcare (Morin, 2001). Yet this ideal falls far from reality in many sectors of American life, including healthcare, as will be discussed in later sections of this report. The discrepancy between Americans’ widely held values and beliefs regarding the importance of equality and the reality of persistent racial inequities tears at the social fabric of the nation and con- tributes to the gulf of understanding between racial, ethnic and socioeco- nomic groups. Finally, for the population at large, racial and ethnic disparities in healthcare raise concerns about the overall quality of care in the United States. Given that racial and ethnic minority groups experience greater

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38 UNEQUAL TREATMENT challenges and barriers to high quality care, their experiences expose healthcare systems’ greatest weaknesses and problems—problems that any American may face in attempting to access healthcare. In this con- text, the extent to which minorities are well or poorly served provides an important indicator of the state of healthcare in the nation. The provision of equitable care that does not vary by patient race, ethnicity, gender, and age is therefore among one of the six overarching goals identified in the Institute of Medicine’s Crossing the Quality Chasm report (IOM, 2001a). As the Chasm report suggests, evidence of unequal or substandard care for some segments of the population, particularly on the basis of group mem- bership, should raise the concern that the provision of care may be incon- sistently and subjectively administered. Inequities in care, therefore, ex- pose a threat to quality care for all Americans. For all of these reasons, should evidence be available to suggest that racial and ethnic disparities in care are widespread, these disparities would be unacceptable. EVIDENCE OF RACIAL AND ETHNIC DISPARITIES IN HEALTHCARE The literature review that follows summarizes articles published in peer-reviewed journals within the last 10 years, with an emphasis on the most recent publications. In selecting literature to review, the committee identified studies that assess racial and ethnic variation in healthcare while controlling for differences in access to healthcare (e.g., by studying simi- larly insured patients or by statistically adjusting for differences in insur- ance status) and/or socioeconomic status. To ensure that the committee’s search was not limited to studies with “positive” findings of racial and ethnic differences in care, searches were conducted for studies that at- tempted to assess variations in care by patient socioeconomic status and geographic region. These studies were included if the researchers as- sessed racial or ethnic differences in care while controlling, as noted above, for patient access-related factors. In addition, the committee focused its review on those studies that attempt to assess the contribution of a range of other potential confounding variables, such as racial and ethnic differ- ences in disease severity, stage of illness progression, patient preferences for non-invasive procedures or to avoid complex treatments, types of set- tings where care is received (e.g., public vs. private clinics, teaching vs. non-teaching hospitals), availability of procedures (e.g., whether catheter- ization is offered on-site), suitability of intervention (e.g., whether subtle racial differences in response to treatments may counter-indicate use), as well as other factors. Further, the committee paid particular attention to studies that assessed the appropriateness of services relative to established

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39 INTRODUCTION AND LITERATURE REVIEW clinical guidelines. To the extent that these studies shed light on potential sources of disparities in care, they are summarized in this review. The committee’s criteria for selecting literature to review are listed in Box 1-2. Almost all of the studies reviewed by the committee contained one or more weaknesses of study design, methodology, or data analysis that lim- ited the committee’s ability to draw findings and conclusions. These weaknesses are noted below, where appropriate. The majority of studies of racial and ethnic disparities in care, for example, use odds ratios, which is a consequence of using logistic regression models, rather than risk ra- tios to assess the extent of disparities in care. Relative to risk ratios, odds ratios exaggerate the apparent effect of a co-variable when the prevalence of the dependent variable is above 5%-10%. The committee therefore cau- tions that in some instances, the magnitude of racial and ethnic disparities as reported in the literature may be exaggerated. In addition, as will be discussed below, no single study adequately controlled for all potential confounding factors (e.g., patient preferences, racial differences in disease severity or presentation, geographic availability of specific services or pro- cedures) simultaneously. The committee therefore considered findings in light of the preponderance of evidence and the merits of each individual study. Noting the importance of assessing study strengths and limita- tions in context, Mayberry and colleagues (2000) write, “[t]he method- ological inadequacy of an individual study may be a relatively moot point in the context of the body of literature that gives consistent findings and in which one study, often the more recent study, may overcome the spe- cific failing of a previous investigation” (Mayberry, Mili, and Ofili, 2000, p. 116). This review yielded over 100 studies (summarized in Appendix B) that assessed racial and ethnic variation in a range of clinical procedures, including the use of diagnostic and therapeutic technologies. This body of literature, however, represents only a fraction of the published studies that investigate racial and ethnic differences in access to and use of healthcare services. Geiger (this volume), for example, has identified over 600 such articles published over the last three decades. For a more com- prehensive review of this literature, the reader is referred to Geiger (this volume) or the reviews of Mayberry and colleagues (Mayberry, Mili, and Ofili, 2000); Kressin and Petersen (2001); Sheifer, Escarce, and Schulman (2000); Ford and Cooper (1995); and the AMA Council on Ethical and Judicial Affairs (1990). Cardiovascular Care Some of the strongest and most consistent evidence for the existence of racial and ethnic disparities in care is found in studies of cardiovascu-

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69 INTRODUCTION AND LITERATURE REVIEW health factors and numbers of physician visits did not change these rela- tionships, and they remained after controlling for age, maternal educa- tion, insurance, poverty status, source of care, geographic location, health status, number of bed days, number of reduced activity days, and physi- cian visits. Similarly, Zito et al. (1998) found that white children were twice as likely to receive psychotropic prescriptions compared with Afri- can-American children. A study examining parents’ perceptions of pediatric care found strik- ing racial and ethnic differences. Weech-Maldonado et al. (2001) used data from the National Consumer Assessment of Health Plans (CAHPS) Benchmarking database and found that minority parents, particularly non-English speakers, were less satisfied than white parents with pediat- ric services, after controlling for parents’ gender, age, education, and their children’s health status. African-American and American-Indian parents were found to be less satisfied than whites in getting needed care, the timeliness of care, provider communication, and health plan services. Among Asian-American and Hispanic parents, parental satisfaction was lower than for whites only among those who were non-English speakers. Asian-American and Hispanic non-English speakers rated staff helpful- ness, timeliness of care, provider communication, health plan services, and getting needed care lower than did white parents, while Asian-Ameri- can and Hispanic parents who were proficient in English did not differ significantly from whites on any reports of care. Mental Health Services Several studies document racial and ethnic variation in receipt of men- tal health services. Significantly, the U.S. Surgeon General recently com- pleted a major report assessing racial and ethnic disparities in mental health and mental healthcare that reviews much of the available litera- ture. That report finds that more so than in other areas of health and medicine, mental health services are “plagued by disparities in the avail- ability of and access to its services,” and that “these disparities are viewed readily through the lenses of racial and cultural diversity, age, and gen- der” (U.S. DHHS, 2001a, p. vi). Major findings of the report include that: mental illnesses are real and disabling conditions that affect all popula- tions (regardless of race/ethnicity); striking disparities are found for ra- cial and ethnic minorities; and these disparities impose a greater disabil- ity burden on racial and ethnic minorities. In addition to universal barriers to quality care (e.g., cost, fragmentation of services), the report notes that other barriers, such as mistrust, fear, discrimination, and lan- guage differences carry special significance for minorities in mental health treatment, as these barriers affect patients’ thoughts, moods, and behav-

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70 UNEQUAL TREATMENT ior. Communication and trust are particularly critical in treatment, the report notes, and differences in the cultural perspectives of the patient and clinician/healthcare system must be acknowledged and addressed (U.S. DHHS, 2001a). The U.S. Surgeon General . . . finds that more so than in other areas of health and medicine, mental health services are “plagued by disparities in the availability of and access to its services,” and that “these disparities are viewed readily through the lenses of racial and cultural diversity, age, and gender.” Several studies have examined disparate use of psychotropic medi- cations and mental health services and find disparities, with minorities in some cases receiving higher quantities of medications. For example, in a study examining prescriptions of antipsychotic medications by physi- cians in psychiatric emergency services, Segal, Bola, and Watson (1996) found that African-American patients received more oral doses and in- jections of antipsychotic medications. The 24-hour dosage of antipsy- chotic medication given to African Americans was also significantly higher that for other patients. Analyses controlled for several clinical factors including presence of psychotic disorder, severity of disturbance, dangerousness, psychiatric history, if physical restraints were used, hours spent in the emergency service, clinician’s efforts to engage patient in treatment, and whether optimum time was spend on the evaluation. The study also found that the tendency to overmedicate African-Ameri- can patients was lower when a clinician’s efforts to engage the patients in treatment were rated as being higher. Models predicting number of medications, number of oral and injected antipsychotic and 24-hour dos- age became non-significant. In contrast, a study examining medication prescribed for depression yielded different results. Melfi and colleagues (2000) assessed antidepres- sant treatment in a population of Medicaid beneficiaries diagnosed with depression. Analyses controlled for age, gender, Medicaid eligibility sta- tus, and several clinical factors. Forty-four percent of whites and 27.8% of blacks received antidepressant treatment within 30 days of the first indi- cator of depression. White patients were more likely to receive antide- pressants than black patients and patients in the other/unknown racial category. An examination of privately insured federal employees, conducted by Padgett and colleagues (1994), assessed racial and ethnic differences in use of inpatient psychiatric services. Analyses controlled for a variety of predisposing factors (e.g., education, family size, racial/ethnic composi- tion of residing county), enabling factors (region of country, salary, high

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71 INTRODUCTION AND LITERATURE REVIEW or low option selected for insurance coverage), and need factors (annual medical expenses, family’s annual medical expenses, other family mem- ber receipt of inpatient psychiatric care, sum of outpatient mental heath visits by other family members). No significant differences were found among blacks, whites and Hispanics as to the probability of a psychiatric hospitalization or in number of inpatient psychiatric days. Racial and Ethnic Differences in Other Clinical and Hospital-Based Services Several studies document racial and ethnic disparities in other clini- cal and hospital-based services. Ebell et al. (1995) assessed the rate of survival by patient race following in-hospital cardiopulmonary resuscita- tion (CPR) of 656 patients at one of three teaching hospitals. Black pa- tients in this study were less likely than non-black patients to have an admitting diagnosis of myocardial infarction (MI), were less likely to have a history of coronary artery disease, but had a higher severity of illness according to a standard screening instrument. Controlling for these vari- ables, black patients were found to have poorer survival to discharge than non-black patients. Because resuscitation was provided in-hospital, dif- ferences in ambulance response time, access to telephones, or other com- munity factors could not account for this difference. Further, because there were no significant racial differences in the success of the resuscita- tion effort, the difference in survival appears to be related to the quality of care after resuscitation, or to other unmeasured factors. Devgan et al. (2000) assessed surgical treatment for glaucoma among large samples of African-American and white Medicare patients, and found that African-American patients received argon laser trabeculo- plasty or trabeculectomy surgery at nearly half of expected rates, once the age-race prevalence of glaucoma was considered. Arozullah et al. (1999) assessed rates of laparoscopic cholecystectomy among more than 16,000 Veterans Administration (VA) patients diagnosed with gall blad- der or biliary disease. After controlling for patient age, marital status, co-morbid illness, year of surgery, and hospital geographic location, the investigators found that African-American patients who underwent cholecystectomy were less likely than white patients to undergo the laparoscopic procedure. In contrast, another study of VA patients (Selim et al., 2001) found that among patients presenting with low-back pain, “non-white” patients in higher levels of pain were more likely to receive lumbar spine radiographs than white patients experiencing similar pain levels, although this racial difference disappeared after controlling for clinical characteristics. Fewer studies have assessed the quality of basic healthcare services.

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72 UNEQUAL TREATMENT In one such study, Ayanian et al. (1999) utilized explicit process criteria and implicit review by physicians to assess the quality of care for patients hospitalized with congestive heart failure and pneumonia. Using records from a stratified random sample of over 2,000 Medicare beneficiaries, the authors found that among patients with congestive heart failure, African Americans received a lower overall quality of care than other patients by implicit review, but not explicit review. Among patients with pneumo- nia, African-American patients received a lower quality of care by explicit criteria, but not explicit review. These differences persisted in analyses adjusting for patient and hospital characteristics. Adjusted analyses also revealed no significant differences in quality of care for patients from poor communities, as compared with other patients. Similarly, in a review of discharge data from over 1.7 million patients assessed via the Hospital Cost and Utilization Project (HCUP-2), Harris, Andrews, and Elixhauser (1997) found that African Americans were less likely than whites to re- ceive major therapeutic procedures for 37 of 77 conditions, and more likely than whites to receive a major therapeutic procedure in 9.1% of condi- tions studied. These differences persisted even after controlling for pa- tients’ age, expected pay source, indicators of clinical condition, and hos- pital-level characteristics (e.g., bed size, public ownership, teaching status, and urban location). In a study of racial differences in mortality and resource use among patients admitted to intensive care units, Williams et al. (1995) found no significant differences in risk-adjusted in-hospital mortality. The authors did find, however, that African-American patients had a shorter length of stay and lower resource use in the first seven days compared with white patients. For example, whites received more technological monitoring (arterial and pulmonary artery catheters, pulse oximetry), more labora- tory testing, and a greater proportion of life-saving treatments. These differences persisted after adjusting for patient characteristics and insur- ance status, leading the researchers to conclude that these differences could reflect undertreatment for African Americans or overutilization of services by whites. In another study of Medicare patients, Wilson, May, and Kelly (1994) assessed racial differences in receipt of total knee arthroplasty among older adults with osteoarthritis. The authors found that while osteoar- thritis was slightly, but not significantly, more common among African Americans, whites were more likely to receive total knee arthroplasty. This relationship held true at all income levels and could not be explained by prior procedures or the use of alternative procedures. White-Means (2000) assessed the use of long-term care services (paid caregiver, therapist, mental health, dentist, foot doctor, optometrist, chi- ropractor, ER visit, doctor visits, prescription medications) by disabled

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73 INTRODUCTION AND LITERATURE REVIEW elderly Medicare patients, as a function of medical conditions and dis- abilities, income, insurance status, regional and rural residence, whether unpaid caregivers provide in-home services, and sociodemographic char- acteristics (e.g., gender, education). Given similar medical conditions, African-American patients were found to be less likely to use long-term care services, particularly prescription medications and physician ser- vices. African-American patients who lived in rural areas, small cities, and western states or who had more joint and breathing problems were more likely to use services. Differences in personal attributes (e.g., in- come, health) did not fully explain racial differences in use of prescrip- tions and physician services. Similarly, Khandker and Simoni-Wastila (1998) assessed racial differences in use and level of use of prescription drugs among a sample of Medicaid patients, controlling for age, sex, and Medicaid eligibility characteristics. African-American children were found to use 2.7 fewer prescriptions compared with white children. Afri- can-American adults used 4.9 fewer prescriptions, and African-American elders used 6.3 fewer prescriptions than white elders. White Medicaid enrollees had higher use and spending than black enrollees across most high-volume therapeutic drug categories. In a study of primary care, Shi (1999) assessed patients’ perceptions of intake, service delivery, referral, and follow-up among nearly 15,000 white, African-American, Hispanic, and Asian respondents to the Medi- cal Expenditure Panel Survey (MEPS). Controlling for patients’ perceived need for care, ability to obtain services, and frequency of use of care, Shi found that African-American, Hispanic, and Asian-American patients tended to experience greater barriers to receiving primary care. Hispanic patients were over 40% less likely to have a usual source of care, while those African-American and Hispanic patients who did report a regular primary care provider tended to reference a facility (hospital or clinic) rather than an individual provider. African Americans were less likely to have a primary care specialist as a regular provider. All three minority groups were 39% to 48% more likely than whites to report long waiting periods before seeing their care provider, but Asian-American patients were more likely than any racial/ethnic groups to report that getting an appointment was “very difficult.” On an encouraging note, this study also found that overwhelming numbers of whites and minority patients reported confidence in their provider and that their usual care provider “listened to them”—over 90% agreement for all groups. A small number of studies have assessed racial and ethnic differences in preventable hospitalizations. Preventable hospitalizations are those that might not have occurred had patients received timely and appropri- ate preventive care in the case of acute conditions, as well as effective and continuous care for chronic conditions. Gaskin and Hoffman (2000) as-

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74 UNEQUAL TREATMENT sessed rates of preventable hospitalizations among children, working-age adults, and the elderly, while adjusting for a range of sociodemographic (e.g., age, income, insurance status), community-level (e.g., neighborhood characteristics, physicians, and hospital beds per capita), and health status (e.g., co-morbidities) variables. Results indicated that African Americans and Hispanics were significantly more likely to be hospitalized for pre- ventable conditions than whites, even after adjusting for patient differ- ences in healthcare needs, socioeconomic status, insurance coverage, and the availability of primary care providers. Subsequent analyses of indi- viduals within similar health insurance plans confirmed that these differ- ences exist independently of insurance status. The findings were limited by the lack of information on the competency of providers seen by minor- ity patients, the adequacy of insurance plans, and personal health-seeking behavior. Minority patients are more likely to undergo amputation than white patients. Such is the case with limb amputation, where more than 50,000 procedures are performed each year among patients with diabetes. Guadagnoli et al. (1995) assessed racial differences in the use of amputa- tion and leg-sparing surgery among a random sample of Medicare pa- tients. The authors found that African-American patients were nearly twice as likely as whites to undergo above-knee amputation, and were slightly more likely than whites to undergo toe and/or foot amputation, controlling for co-morbid disease, prior hospitalizations, geographic re- gion, hospital teaching status, and other factors. Whites, on the other hand, were more likely to undergo lower-extremity arterial revasculari- zation and percutaneous transluminal angioplasty than African-Ameri- can patients. The study did not, however, control for disease severity, although the authors note that controls for co-morbid disease and prior hospitalizations may attenuate this potential confounding factor. Simi- larly, Gornick et al. (1996), in a study of 26.3 million Medicare beneficia- ries, found that African Americans were more likely than whites to un- dergo bilateral orchiectomy or amputation of the lower limbs, even after controlling for income differences. Finally, Collins et al. (2002) assessed racial and ethnic differences in rates of lower extremity amputation ver- sus lower extremity bypass revascularization among a sample of VA pa- tients with peripheral arterial disease. In this prospective study, the au- thors statistically adjusted for a range of factors that may be associated with the use of amputation versus revascularization (e.g., presence of dia- betes, hypertension, heart disease, or other co-morbid conditions, behav- ioral risk factors such as smoking or alcohol use, geographic location of the VA hospital), and found that African-American and Hispanic patients were 1.5 and 1.4 times, respectively, more likely than white patients to undergo amputation than revascularization (Collins et al., 2002).

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75 INTRODUCTION AND LITERATURE REVIEW Gaps in Existing Research While the research reviewed here points to significant variation in access to and use of services by race and ethnicity, several gaps exist that must be addressed to develop a more comprehensive understanding of racial and ethnic disparities in healthcare. The most significant gap in this research is the failure to identify mechanisms by which these disparities occur. A robust research agenda is needed to better understand how the process and structure of care may vary by patient race (see chapter on “Needed Research”). Such research must consider the range of influences on patients’ and providers’ attitudes and expectations in the clinical en- counter, clinical decision-making processes employed by healthcare pro- viders and the influence of patient race in these processes, the nature and quality of communication between patients and providers (particularly as it occurs across cultural and/or linguistic lines), the environments and settings in which care is delivered, and other factors that will be discussed later in this report. In addition, as noted below, no research has yet illu- minated the relative contribution of these factors to the healthcare dis- parities observed in the literature. Assessing sources of disparities in care in the current literature is also complicated by many methodological considerations. Attempts to con- trol for SES differences are inconsistent, with some researchers employing patient income or education as sole indicators of SES, and others using proxy variables such as estimates of income on the basis of patients’ zip code information. Most studies control for insurance status, but some combine data from patients insured via different types of health systems (e.g., HMO or fee-for-service) or different sources of insurance coverage (e.g., public vs. private). Some studies have explicitly examined differences in where racial and ethnic groups receive care (e.g., public vs. private healthcare settings), and clinical factors such as stage of illness progression at presentation (e.g., on average, ethnic minority cancer patients present at later stages of disease progression, thereby limiting treatment options) or other co-mor- bid factors that may limit treatment options. Other studies have at- tempted to control for the quality of diagnostic evaluation and disease severity. Adequate assessment of these factors, however, is often limited by a lack of sufficient information in administrative claims data upon which many studies are based. These datasets often rely on crude or in- complete measures of disease severity and the types of treatment pro- vided, and contain limited information on prior diagnoses or treatments. Further, most studies (with the exception of several studies of cardiovas- cular care) lack comparison to standards for the appropriateness of care,

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76 UNEQUAL TREATMENT leaving open the question of whether care received was sufficient given the type and severity of disease. Finally, one of the most significant limitations of existing research is the failure to analyze differences in care beyond comparisons of African- American and white patients. With the exception of a few large studies conducted in ethnically diverse regions of the United States such as Cali- fornia and New York, few studies have assessed whether disparities in care exist for Hispanic and Asian-American populations. Further, few studies have examined subgroup differences within these populations. These issues are particularly salient for Hispanic and Asian-American subgroups, whose healthcare may be complicated by linguistic and cul- tural differences, immigration status, and other access-related issues. The Extent of Racial and Ethnic Disparities in Healthcare As the discussion above suggests, many factors influence the provi- sion and receipt of diagnostic and therapeutic healthcare services. Fur- ther, healthcare outcomes are influenced by a wide variety of factors, many of which are beyond the scope of clinical factors such as the efficacy of treatment protocols. Assessing the relative contribution of the many patient, provider, and system-level influences on care is therefore an im- precise exercise. Similarly, assessing the extent of racial and ethnic differ- ences in healthcare that are not otherwise attributable to known factors such as access to care is not likely to yield reliable estimates. Some studies have attempted to assess the extent of racial and ethnic disparities in a small number of key indicators of healthcare use. Weinick, Zuvekas, and Cohen (2000) assessed racial and ethnic differences in ac- cess to and use of healthcare services (i.e., having a usual source of care and the use of ambulatory care services), and evaluated the magnitude of these differences above and beyond access-related factors such as insur- ance status, income, and other socioeconomic characteristics. The authors found that after adjusting for health insurance, income, age, sex, marital status, education, health status, region of the country, and residence in a metropolitan area, Hispanics and African Americans were significantly more likely to lack a usual source of care and were less likely to use any ambulatory care services than white Americans. Hispanics were nearly 10% more likely to lack a usual source of care, and African Americans and Hispanics were nearly 9% and over 10% less likely, respectively, to have made any ambulatory care visits. The authors performed additional analyses to assess the extent of these disparities, simulating conditions in which all racial and ethnic groups earned equivalent income and were insured at the same level. For all groups, 55% to 77% of the observed differences remained, demonstrating that “health insurance coverage and

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77 INTRODUCTION AND LITERATURE REVIEW income typically each account for only about one fifth, and never even as much as one half, of the disparities . . . observed” (Weinick, Zuvekas, and Cohen, 2000, p.43). The authors acknowledge, however, that these racial and ethnic disparities in the use of services could be related to unmea- sured factors, such as job-related and non-financial barriers, poor cultural and linguistic access, an inadequate geographic distribution of healthcare providers in racial and ethnic minority communities, and other factors. More such studies are needed to assess the relative contribution of access-related factors (e.g., insurance status), other socioeconomic and geographic variables (e.g., patients’ education, income, and the availabil- ity of healthcare providers in a community), and racial and ethnic differ- ences in healthcare preferences and attitudes to determine the extent of disparities in care. This research is needed across a range of health condi- tions. Currently, however, this research does not present a sufficient em- pirical foundation to assess the extent of racial and ethnic healthcare dis- parities. The committee therefore concludes that while evidence of racial and ethnic disparities in care appears consistently across a range of health conditions and medical procedures, attempts to assess or quantify the ex- tent of these disparities, based on evidence currently available, are not likely to prove to be reliable or valid. SUMMARY Racial and ethnic minority patients are found to receive a lower qual- ity and intensity of healthcare and diagnostic services across a wide range of procedures and disease areas. This finding is remarkably consistent and robust, as only a handful of the several hundred studies reviewed here and by others (e.g., Geiger, this volume; Kressin and Peterson, 2001; Mayberry et al., 2000) find no racial and ethnic differences in care. In studies where patients’ sociodemographic characteristics (e.g., education level, income), insurance status (e.g., public or privately funded insur- ance) and clinical factors (e.g., co-morbid illness, severity of disease) are controlled, these racial and ethnic differences are generally attenuated, but rarely disappear completely. Further, in a few well-designed, pro- spective studies, these disparities in care have been linked to poorer clini- cal outcomes and higher mortality among minorities (Peterson et al., 1997; Bach et al., 1999). Insurance status, in particular, emerges in several studies as a key predictor of the quality of care that patients receive. The privately in- sured generally receive a higher quality of care than those who are in- sured through publicly funded sources (e.g., Medicaid), or those who have no health insurance. Racial and ethnic minorities are disproportionately represented between the latter two categories, yet when sources of insur-

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78 UNEQUAL TREATMENT ance are controlled statistically or by study design, race and ethnicity re- main as significant predictors of the quality of care. This disparity is best illustrated in studies of care among Medicare populations (Gornick et al., 1996), which reveal lower rates of use of effective, higher technology diag- nostic and therapeutic procedures among minorities for illnesses such as heart disease, cancer, and other chronic illnesses, and higher rates of less desirable procedures, such as amputation and bilateral orchiectomy. The quality of care that minority and non-minority patients receive is also partly a function of where these populations tend to receive care. Several studies note that patient care is of lower quality in non-teaching hospitals, public hospitals and clinics than in teaching hospitals or private settings. While some minorities are more likely to receive care in the former settings, they are more likely to access care in emergency depart- ments, and are less likely to have a regular source of care (Collins, Hall, and Neuhaus, 1999). Further, minorities tend to have lower access than whites to specialty care, and are less likely to be treated in settings that offer higher-technology procedures—all factors related to the quality of care in the studies reviewed here. Again, however, when these variables are controlled statistically or by study design, racial and ethnic minorities tend to receive a lower quality of care. Most studies have compared the quality of care received by minority patients relative to that of whites as the standard of comparison. This type of analysis, however, fails to provide a complete picture of the ap- propriateness of care, as whites may over-utilize some services, and racial differences in the severity of disease at presentation or treatment response may contraindicate the use of similar therapeutic interventions. Some of the best-designed studies reviewed here, however, assessed the quality of care provided relative to well-established clinical criteria, and use objec- tive diagnostic measures to assess the extent and severity of disease. In these studies, race and ethnicity again typically emerge as significant pre- dictors of the quality of care received, indicating that disparities in care are not simply a function of disproportionate use by whites or greater disease severity among minorities. These findings appear consistently in studies of differences in care received by African-American and white populations, and increasingly, in studies involving Hispanic patients. A few studies suggest that Asian Americans also are less likely to receive the same quality of care as whites (e.g., Carlisle et al., 1995). This review produced no studies where the quality of care for American Indian, Alaska Native, or Pacific Islander populations were explicitly studied, or where the sample size of these populations permitted analysis. Further, in few instances were subgroups of these populations explicitly studied. As will be discussed in a later

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79 INTRODUCTION AND LITERATURE REVIEW chapter, research is urgently needed to assess the quality of care for these populations relative to the burden of illness. A few of the studies that find no racial and ethnic differences in care indicate that characteristics of health systems may serve an important role in mediating these disparities. Studies of patients in military healthcare systems reviewed here indicate a lower prevalence of racial or ethnic dif- ferences in the quality of healthcare that active-duty personnel or their families receive. Similarly, some studies of patients in VA systems dem- onstrate reductions in racial and ethnic differences in care, although these studies are less consistent. Future research must assess the range of fac- tors that distinguish these heath systems from other private or publicly funded systems to better understand how patient race and ethnicity are related to care and care outcomes. For example, the impact of differences in provider profiles should be investigated, as VA hospitals commonly are staffed by a larger percentage of trainees than other systems. None- theless, these studies suggest that characteristics of these health systems, perhaps related to universal or equal access to care, may attenuate dis- parities that are typically found in other systems. Collectively, these findings support the hypothesis that patients’ race and ethnicity significantly predict the quality and intensity of care that they receive. Succeeding chapters of this report will review the historical context in which these disparities occur, and examine the types of settings in which minorities typically receive care, as well as the characteristics of healthcare providers that serve them. Potential sources of healthcare dis- parities will be closely examined, including patient preferences; provider biases, stereotyping, and clinical decision-making; and the impact of fi- nancial and institutional characteristics of health systems on the quality of care for minority patients. Finally, several strategies to eliminate these disparities are proposed, and future research directions are outlined. Finding 1-1: Racial and ethnic disparities in healthcare exist and, because they are associated with worse outcomes in many cases, are unacceptable. Racial and ethnic disparities in healthcare exist. These disparities are consistent and extensive across a range of medical conditions and healthcare services, are associated with worse health outcomes, and occur independently of insurance status, income, and educa- tion, among other factors that influence access to healthcare. These disparities are unacceptable.