Abstract
Excerpted From: Vernellia R. Randall, Eliminating Racial Discrimination in Health Care: A Call for State Health Care Anti-discrimination Law, 10 DePaul Journal of Health Care Law 1 (Fall 2006) (123 Footnotes) (Full Document)
“It might be that civil rights laws often go unenforced; it might be that current inequities spring from past prejudice and long standing economic differences that are not entirely reachable by law; or it might be that the law sometimes fails to reflect, and consequently fails to correct, the barriers faced by people of color.” --Derrick Bell Equal access to quality health care is a crucial issue facing the United States (“US”). For too long, we have denied too many Americans equal access to quality health care based on race, ethnicity, and gender. Many factors contribute to inequities: cultural incompetence of health care providers, socioeconomic inequities, disparate impact of facially neutral practices and policies, inadequacy of civil rights laws and enforcement, and multiple forms of discrimination. These inequities exist in health status, access to health care services, participation in health research and receipt of health care financing. This inequity in health care is doubly significant given the devastating racial inequity in health status that exists. The combination of racial inequity in health status, institutional racism in health care and inadequate legal protection points to a need for a major civil rights law for health care.
I. INEQUITY IN HEALTH STATUS: BRIEF REVIEW
The need to focus specific attention on the discrimination inherent in the institutions and structures of health care is overwhelming. Racial minorities are sicker than white Americans; they are dying at a significantly higher rate. These are undisputed facts. Many examples of inequities in health status between racial/ethnic groups exist: infant mortality rates are 2 times higher for blacks, and 1 times higher for American Indians, than for whites; the death rate for heart disease for blacks is higher than for whites; 50 percent of all AIDS cases are among minorities who account for only 25 percent of the U.S. population; the prevalence of diabetes is 70 percent higher among blacks and twice as high among Hispanics as among whites; Asian Americans and Pacific Islanders have the highest rate of tuberculosis of any racial/ethnic group; cervical cancer is nearly five times more likely among Vietnamese American women than white women; women are less likely than men to receive lifesaving drugs for heart attacks; more women than men require bypass surgery or suffer a heart attack after an angioplasty.
Yet, despite these significant health status inequities, we have denied many Americans equal access to quality health care based on race, ethnicity, and gender. Factors that contribute to this inequity in health care include the following: cultural incompetence of health care providers, socioeconomic inequities, disparate impact of facially neutral practices and policies, misunderstanding of civil rights laws, and discrimination contribute to inequities in health status, access to health care services, participation in health research, and receipt of health care financing.
Drs. Michael Byrd and Linda Clayton clearly laid out the long history of racism and medicine in their seminal work: “An American Dilemma: A Medical History of African Americans and the Problem of Race, Beginnings to 1900‘ and “An American Dilemma: A Medical History of African Americans and the Problem of Race, 1900 to 2000.‘ In their work, Drs. Byrd and Clayton show that the problem of black health status and black health care access is a part of a long continuum of racism and racial discrimination dating back almost 400 years. In fact, since colonial times, the racial dilemma that affected America also distorted medical relationships and institutions. Throughout our history, we have actively assigned racial minorities to the underfunded, overcrowded, inferior, public health care sector.
Historically, medical doctors and medical leadership helped to establish and maintain a racially discriminatory health care system. They helped to establish the slaveocracy, create the racial inferiority myths, build a segregated health subsystem, and maintain racial bias in the diagnosis and treatment of patients. Only after 350 years of active discrimination and neglect, were efforts made to admit minorities into the “mainstream” health system. However, these efforts were flawed and since 1975 minority health status has steadily eroded. Consequently, minorities continue to experience racial discrimination in access to health care and quality of health care received.
Yet, current issues in health inequities are not isolated to problems in the health system. They are the cumulative result of both past and current racism throughout US culture. For instance, because of institutional racism, minorities have less education and fewer educational opportunities. Minorities are disproportionately homeless and have poorer housing options. Due to discrimination and limited educational opportunities, minorities disproportionately work in low pay, high health risk occupations (e.g., migrant farm workers, fast food workers, garment industry workers). Historic and present racism in land and planning policy also plays a critical role in minority health status. Minorities are much more likely to have toxic materials (and other unhealthy uses) sited in their communities than whites despite income. For example, over-concentration of alcohol and tobacco outlets and the legal and illegal dumping of pollutants pose serious health risks to minorities. Exposure to these risks is not a matter of individual control or even individual choice. It is a direct result of discriminatory policies designed to protect white privilege at the expense of minority health.
II. INEQUITY IN HEALTH CARE: A BRIEF REVIEW
Compounding the racial discrimination experienced generally, is the institutional racism in health care that affects access to health care and the quality of health care received. Despite efforts to eliminate discrimination and reduce racial segregation over the past thirty years, little change in the quality of or access to health care for many minorities has occurred. According to the US Commission on Civil Rights:
“Despite the existence of civil rights legislation equal treatment and equal access are not a reality for racial/ethnic minorities and women in the current climate of the health care industry. Many barriers limit both the quality of health care and utilization for these groups, including . . . discrimination.”
Racial discrimination in health care delivery, financing, and research continues to exist, and racial barriers to quality health care manifests themselves in many ways including: lack of economic access to health care, barriers to hospitals and health care institutions, barriers to physicians and other providers, racial discrimination in medical treatment, discriminatory policies and practices, lack of language and culturally competent care, disparate impact of the intersection of race and gender, inadequate inclusion in health care research, and rationing through managed care.
III. INADEQUACY OF FEDERAL ANTI-DISCRIMINATION PROTECTION
Several federal laws address access to health care: Title XVIII (Medicare) Title XIX (Medicaid) of the Social Security Act, Title IX, and the Hill Burton Act. The only federal law related to eliminating racial discrimination in health care delivery is Title VI of the Civil Rights Act.
Racial inequality in health care persists in the United States despite laws against racial discrimination, in significant part because of the inadequacy of Title VI. On its face, Title VI (with its implementing regulations) should be an effective tool for eliminating racial discrimination. The Civil Rights Act of 1964 provides the legal force for desegregation efforts in health care. Specifically, Section 601 of Title VI provides: “No person in the United States, shall, on the grounds of race, color, or national origin, be excluded from participation in, be denied the benefits of, or be subject to discrimination under any program or activity receiving federal financial assistance.”
In short, Title VI appears to prohibit discrimination of all kinds. Still, nothing in anti-discrimination law is as simple as it might appear. While, several problems are that make Title VI and ineffective tool, among the most significant is the interpretation by the Supreme Court that Title VI only addresses intentional discrimination only. Further, regulatory agencies have interpreted Title VI to exclude physicians in private practice.
Unfortunately, the Supreme Court has held in Alexander v. Choate that Title VI itself directly reached only instances of intentional discrimination; included in the definition is subtle discrimination. Subtle discrimination is generally considered intentional based on large part on micro-aggressions with the primary difference being the reliance on circumstantial evidence to improve intent. However, the reliance on intent, subtle or direct, is particularly problematic for health care where most discrimination is either disparate impact discrimination or “unthinking or unconscious.”
[T]he course of treatment physicians . . . recommend to their patients may be influenced by stereotypical beliefs about the behavior of their patients. Physicians . . . may believe that poor and minority patients are more likely to break appointments and to misunderstand complex information, and less likely to adhere to their orders. These perceptions may affect--perhaps subconsciously--the decision-making process and lead physicians to refrain from orders that require patient compliance and to hesitate before recommending certain procedure if they assume the patient does not live in an environment that is conducive to the aftercare needed for the best outcomes of the procedure . . . .
While legal standards for discrimination have not always centered on intent, they do so now. To prove a disparate treatment claim an individual must show that the defendant intentionally discriminated. Such a standard means that few of the discriminatory acts that occur in the health care system can be successfully litigated since most occur from “unthinking” or “unconscious” biases.
Psychiatric, psychological, and legal literature generally support the idea that, in our society, most contemporary discrimination is based more on unconscious bias and stereotyping rather than on conscious bigotry. As suggested by Professor Lawrence:
Traditional notions of intent do not reflect the fact that decisions about racial matters are influenced in large part by factors that can be characterized as neither intentional--in the sense that certain outcomes are self-consciously sought--nor unintentional--in the sense that the outcomes are random, fortuitous, and uninfluenced by the decision-maker's beliefs, desires, and wishes.
The problem confronting the legal system is that an individual who holds a negative stereotype about a group is more likely to discriminate against an individual that fits the stereotype. This stereotype-linked bias is both an automatic process and an unconscious one. Furthermore, it occurs even among persons who are not prejudiced. to Professor David Williams, several factors contribute to the unbiased discrimination in health care:
First, healthcare providers are a part of the larger society that views racial and ethnic minorities negatively on multiple social dimensions . . . Second, research on stereotypes indicates that encounters in the healthcare setting contain ingredients that enhance the likelihood of the use of stereotypes. Stereotypes are more likely to be activated under conditions of time pressure, the need to make quick judgments, cognitive overload, task complexity and when the emotions of anger or anxiety are present . . . Third, . . . [physicians view their Black patients] . . . more negatively than their white counterparts. . . . Physicians viewed Black patients (compared to their white counterparts) as less likely to adhere to medical advice, less likely to be kind, intelligent and educated, more likely to lack social support, and more likely to abuse alcohol and drugs.
However, notwithstanding that the discrimination is based on some unconscious or unthinking processes, an individual can change
Social psychological research, reviewed here in four major sections, explains that stereotyping, prejudice, and discrimination have (1) some apparently automatic aspects and (2) some socially pragmatic aspects, both of which tend to sustain them. But, as research also indicates, change is possible, for (3) stereotyping, prejudice, and discrimination seem individually controllable, and consequently, (4) social structure influences their occurrence. . . . The bad news is that people's habitual use of subjectively diagnostic information, certain information configurations, and perceived co-variation sustains stereotypes. . . . The good news is that people can sometimes control even apparently automatic biases, if appropriately motivated, given the right kind of information, and in the right mood. People therefore can make the hard choice.
Recognizing, the need to get at more than intentional discrimination the Office of Civil Rights (OCR) which was delegated the responsibility of enforcing Title VI and Department of Health and Human Services (DHHS) issued interpretive regulations which provided for disparate impact discrimination:
A recipient . . . may not . . . utilize criteria or methods of administration which have the effect of subjecting individuals to discrimination of their race, color or national origin, or have the effect of defeating or substantially impairing accomplishment of the objectives of the program as respect individuals of a particular race, color, or national origin.
The regulations defined a recipient as any public or private entity or individual that receives federal financial assistance. Federal financial assistance includes federal money awarded through grant, loan, or contract. Because of these two definitions, Title VI, had the potential of having a broad range effect. Once a program or individual has been determined to violate Title VI, the program or individual ‘must take affirmative action to overcome the effects of prior discrimination. ‘ Furthermore, the regulations went further and prohibited:
• Criteria or methods of administration which have the effect of subjecting individuals to discrimination; criteria or methods of administration which have the effect of defeating or substantially impairing accomplishment of the objectives of the program;
• Difference in quality of services;
• Differences in quantity or the manner in which the benefit is provided; and,
• Locating services with the purpose or effect of excluding individuals from the benefits of the program.
In theory then Title VI regulation should improve access to and quality of health care services. Title VI regulations clearly prohibit policies and practices that result in segregation within and between institutions. Title VI's regulations had the potential of forcing health care practitioners and institutions to evaluate their policies and practices that have a disparate impact on racial minorities. Unfortunately, because of Alexander v. Sandoval and unique problems of health care discrimination, Title VI and its regulations are virtually useless.
In Sandoval, the court held in a five-to-four decision that despite a line of Title VI precedents, that disparate impact regulation issued under § 602 could only be enforced through a private right of action. Since the law requires a conscious discriminatory purpose or intent, individual discrimination claims cannot address the issue of unconscious discrimination and health care providers will not be “appropriately motivated” to make the hard choice.
Even without the problem with Sandoval Title VI enforcement has been problematic First, although required by regulation to produce data, the Office of Civil Right's (“OCR”) Title VI enforcement effort has produced little consistent data for evaluating Title VI compliance. Second, there has been “little uniformity in how different states handle Title VI requirements, little guidance, little analysis of the information collected by this process, no research and development.” Third, Title VI lacks specific definitions of prohibited discrimination and acceptable remedial action. Fourth, OCR has relied on individual complaints to enforce Title VI. Finally, Title VI would have limited application to health care treatment discrimination since HEW has interpreted Title VI to not apply to private physicians who received money for treating patients covered under Medicare Part B. Thus, under Title VI physicians would not be recipients of federal financial assistance and consequently not covered by Title VI.
Taking the “even if” a step further, even if the problems with Title VI enforcement did not exist and Title VI functioned perfectly; the health care industry presents unique problems that would still make Title VI ineffective. Furthermore, the health care system presents several additional problems. First, as with the situation when racial minorities use housing and lending institutions, individuals are, for the most part, totally unaware that the provider or institution has discriminated against them. Similarly, because of the very specialized knowledge required in medical care, individuals can be totally unaware that the provider has injured them. Finally, the health care system, through managed care, has actually built in incentives that encourage “unconscious” discrimination. Because of these issues, an appropriate legal structure is essential to eliminating discrimination in health care.
IV. STATE HEALTH CARE ANTI-DISCRIMINATION ACT
In an effective public health policy, appropriate state and federal laws must be available to eliminate discriminatory practices in health care. Thus, the crux of the problem, given managed care, the historical inequity in health care, and “unthinking discrimination,” the laws do not address the current barriers faced by minorities. The executive branch, the legislatures and the courts are singularly reluctant to hold health care institutions and providers responsible for institutional racism. As the United States Commission on Civil Rights found:
There is substantial evidence that discrimination in health care delivery, financing and research continues to exist. Such evidence suggests that Federal laws designed to address inequality in health care have not been adequately enforced by federal agencies . . . [Such failure has] . . . resulted in a failure to remove the historical barriers to access to quality health care for women and minorities, which, in turn has perpetuated these barriers.
Health Care Anti-Discrimination Act should be enacted which would (1) recognize multiple forms of discrimination (2) authorize and fund testers, (3) assure fines & regulatory enforcement (4) require a health scorecard/report for health agency, provider or facility, and (5) require data collection and reporting.
A. Recognize Multiple Forms of Discrimination
Racial inequity in medical treatment rarely occurs because of overt, intentional discrimination behavior. Most race discrimination that occurs in health care is probably the result of subconscious bias, disproportionate impact of policies and practices, disparate impact. A state law on health care discrimination would at a minimum define discrimination in a way that included: intentional discrimination, subtle discrimination, unthinking discrimination and disparate impact. The law should define intentional discrimination to include knowledge of disparate impact and failure to take effective steps to reduce impact. Furthermore, any affirmative defenses, such as business necessity, should be limited and narrowly defined.
B. Authorize and Fund the Use of Medical Testers
To discourage health care discrimination, an 'aggrieved person' should include not only the individual who has been injured, but also one who believes that he or she will be injured, as well as individuals engaged as testers and organizations engaged in testing. In testing, the testing organization sends persons pretending to be patients who share common traits or symptoms except their race to health care facilities or providers to prove that patients of a particular race receive different treatment. This is important because much of health care discrimination goes unnoticed, unsuspected, undetected, or unreported.
Even in cases where discrimination is suspected, the victim will have an almost impossible time developing adequate proof because there will be almost no opportunity to witness better treatment to a similarly situated white patient. “Testing” could provide both evidence in the individual case and some accurate empirical data on the overall rate at which discrimination occurs in health care. Testing has been widely used to enforce Title VIII, which prohibits discrimination in the sale, advertising, and rental of housing. However, while use of tests under Title VIII is well-settled, it is an issue of great debate in other areas, such as employment discrimination under Title VII and section 1981 of the Civil Rights Act of 1866. A statute that authorizes the use of testers will bypass that debate in the courts because the Supreme Court has already noted that “Congress may enact statutes creating legal rights, the invasion of which creates standing, although no injury would exist without the statute.”
C. Provide a Private and Organizational Right of Action
An anti-discrimination health care statute would provide for a private right of action and organizational right of action. The private right of action would assure that individuals (including testers) would have standing to sue not only under the statute but also under any implementing regulations; thus, avoiding the problem that occurred in federal civil rights enforcement. Furthermore, there are many reasons why limiting enforcement to state agencies may be inadequate. For instance, the agency may not have sufficient staff to devote the resources necessary to enforce the civil rights violations. Administrative complaints with state agencies rather than going to court may limit some avenues of redress. State agencies may be limited in their capacity to mandate redress for aggrieved plaintiffs. Without a private right of action, racial discrimination in health care will be impossible to eliminate.
In addition to the private right of action, an organizational right of action is essential to allowing testing to be carried out more broadly by civil rights organizations. These organizations and testers would have standing to sue and could recoup the costs of testing programs. This would provide the necessary incentive for civil rights organizations to create testing programs and make their existence known to potential victims of discrimination.
D. Establish Equality Health Care Council
The act should establish “Health Care Council,” patterned after Fair housing councils. This council could serve several distinct functions, including educating the public, training health care providers and institutions, providing counseling and health care-finding services to individuals, investigating discrimination complaints--mostly through testing--and pursuing legal remedies. Such council would provide a focal point, anti-discrimination work in health care. It could easily be an extension of existing state minority health efforts. Thus, when someone believes she has been discriminated against in a health care, she would have somewhere to turn for help.
E. Prevailing Party Attorney Fees
The health care anti-discrimination statute would provide for attorneys' fees for a prevailing party. Many federal statutes authorize attorneys' fees for a prevailing party. The statute should grant prevailing party status when, because of the law suit, a party's ends are accomplished. Under the catalyst theory, the focus is on whether the party obtained its desired result, despite whether the party obtained a favorable ruling. Prevailing Party Attorney Fees would help to provide the financial incentives needed to pursue.
F. Punitive Damage, in Part or in Whole, to Fund Monitoring and Assessment Programs
Compensatory damages make discrimination victims whole for injuries to their injuries. Punitive damages, on the other hand, punish past conduct, teach defendants not to commit these acts again and deter others from similar behavior. Similar to split-recovery statutes, all or part of the punitive damages should be placed into a fund that would ultimately be used to promote equality health care including discrimination testing.
G. Require Data Collection and Reporting
Current data collection efforts fail to capture the diversity of racial and ethnic communities in the United States. Data are aggregated information on subgroups within the five racial and ethnic categories that are not collected systematically. Further, racial and ethnic classifications are often limited on surveys and other data collection instruments, and minorities are often misclassified on vital statistics records and other surveys and censuses. To fully understand the health status, of all individuals, as well as to recognize the barriers they face in obtaining quality health care it is important to collect the most complete data on underrepresented groups, and sub-populations. The lack of data on these groups makes it difficult to conduct research studies and comparative analyses. Furthermore, the lack of a uniform data collection method makes obtaining an accurate and specific description of race discrimination in health care difficult. The existing data collection does not allow for regularly collecting race data on provider and institutional behavior.
Given the array of potential issues, some researchers have argued that health data should not be disaggregated by race. It could be argued that the use of race in health data promotes and maintains the view that race is a biological concept or that racial categorizations perpetuate and encourage racial fragmentation. Such views see potential for harm from the use of race.
However, there are a number of important and compelling reasons for disaggregating health status and health care data by race. First, the use of race is not the cause of racism but the result of racism. That is, individuals have been discriminated against based on color; established hierarchy and superiority are based on color. Consequently, racism and racial discrimination will continue to exist (that is, discrimination based on color) even if terminology change or cease to exist. For instance, even though race data are not collected in the European Union in the same way as they are in the United States, racism and racial discrimination continues to exist as a worldwide problem. Here in the United States, even when one controls for socioeconomic status, health status and health care differentials continue to exist.
Second, racism and racial discrimination have implications for every institution and social practice. Health status is impacted by racial discrimination in housing, employment, environment, education, and other institutions. Third, calls to not disaggregate data ignore the power and status differentials that exist among all racial groups. point is illustrated when one considers the disproportionate percentage of racially disadvantaged individuals who are poor. Fourth, as long as some groups continue to experience discrimination, it is important to monitor their well being. Fifth, to fully understand the health status of all individuals as well as to recognize the barriers they face in obtaining quality health care, it is important to collect the most complete data on “racially disadvantaged” groups and ‘sub-groups‘. The lack of a uniform data collection method makes obtaining an accurate and specific description of racial discrimination in health care difficult, if not impossible. Such data collection has to include collecting data on provider and institutional behavior.
“Although not useful as a biological category, race has been and is likely to continue to be an important social category. It is what sociologists call a master status-a central determinant of social identity and obligations, as well as of access to societal rewards and resources. From our earliest health records, race has been an empirically robust predictor of variations in morbidity and mortality. Collecting the appropriate data on race can facilitate ongoing monitoring of the magnitude of differentials, enhanced understanding of their causes and the development of effective interventions to address them.”
Race matters because racism and racial discrimination matter. Disaggregating data based on race is important because it helps to make the impact of racism and racial discrimination visible and thus allows us to address the root problem.
H. Require a Health Report Card for Health Agency, Provider or Facility
If we are serious about eliminating racial discrimination, the systematic collection and reporting of data from each health care provider on racial inequities in the use of services and the choices of diagnostic and therapeutic alternatives would provide an additional tool in civil rights monitoring. The “report card” approach is not new and is being done to “assure accountability, consumer choice, and goal-directed action.” Existing and proposed health care ‘report cards‘ could be used and only need to be stratified by race. As Sidney Watson discussed:
Reporting race-based data on health care is relatively easy once we get over our squeamishness about talking about race and recognize the need for this information. Physicians already gather information on patient race as part of a standard medical history. All this is needed is to compile and report racial and ethnic information in a format that protects patient confidentiality and privacy. . .
Report cards that reflect racial disparities will provide a strong evidence that racism, “intentional or unintentional, institutional or individual--is affecting patient care.”
I. Assure Adequate Fines and Regulatory Enforcement
The importance of rigorous enforcement of regulation as a primary vehicle for policing health services cannot be overemphasized. The collection of data and the development of a report care need the teeth of regulatory enforcement. Thus, a statute which allows significant civil penalty to be assessed for violation of regulations designed to eliminate racial inequities is important to compliance. Current administrative penalty involves termination of funds. Such a step is highly unlikely; consequently, it is the effective equivalent of having no penalty at all. If substantial fines were mandated and collected for violating anti-discrimination law, then such fines could be collected and deposited directly into a restricted account that could be used only to enhance and improve racial inequities.
V. CONCLUSION
The questions raised are: why modifying existing federal law (i.e., Title VI) is insufficient or why not adopt a Health Care Anti-Discrimination Law on the federal level? My discussion above should answer the first question. Title VI is hopelessly flawed and minor tinkering will not be sufficient to make it an effective tool. As to the question of why not a new federal law, frankly the answer is political feasibility. From a political perspective, the antagonism to civil rights makes it highly unlikely such an approach will work. Furthermore, the states are major players in the civil rights arena and have an infrastructure on which a new civil rights law could be based.
The discussion of discrimination in health care has been limited. That discussion has centered almost entirely around Title VI of the Civil Rights Act and on assuring access to facilities and providers. In an effective public health policy, appropriate state and federal laws must be available to eliminate discriminatory practices in health care. Thus, the crux of the problem for the legal system: given managed care, the historical inequity in health care, and unthinking discrimination, what is the best way for the legal system to remedy racial discrimination in the health care system?
