Another way to frame the causes of health disparities is via the factors affecting health that were identified in the 1974 Lalonde report, “A New Perspective on the Health of Canadians.” This report probably was the first acknowledgment by a major industrialized country that health is determined by more than biological factors. The report led to the development of the “health field” concept, which identified four health fields that were interdependently responsible for individual health:
1. Environment. All matters related to health external to the human body and over which the individual has little or no control. Includes the physical and social environment.
2. Human biology. All aspects of health, physical and mental, developed within the human body as a result of organic makeup.
3. Lifestyle. The aggregation of personal decisions over which the
individual has control. Self-imposed risks created by unhealthy lifestyle choices can be said to contribute to, or cause, illness or death.
4. Health care organization. The quantity, quality, arrangement, nature, and relationships of people and resources in the provision of health care.
These four domains were later refined to include five intersecting domains:
1. environmental exposures,
3. behavior (lifestyle) choices,
4. social circumstances, and
5. medical care (Institute of Medicine [IOM], 2001).
All five domains are integrated and affected by one another. For example, people who have more education usually have higher incomes (social circumstances), are more likely to live in neighborhoods with fewer environmental health risks (environmental exposures), and have money to purchase healthier foods (lifestyle). Let’s look at each of these domains in more detail.
Environmental Exposures Environmental conditions are believed to play an important role in producing and maintaining health disparities. The environment influences our health in many ways, including through exposures to physical, chemical, and biological risk factors and through related changes in our behavior in response to those factors. In general, whites and minorities do not have the same exposure to environmental health threats because they live in different neighborhoods. Residential segregation still exists.
Residential segregation between white and black populations continues
to be very high in U.S. metropolitan areas. Residential segregation of Hispanics/Latinos is not yet as high as that of African Americans, but it has been increasing over the past few decades; black segregation has modestly decreased (Iceland, Weinberg, & Steinmetz, 2002).
Growing evidence suggests that segregation is a key determinant of racial inequalities for a broad range of societal outcomes, including health disparities (Acevedo-Garcia, Osypuk, McArdle, & Williams, 2008). Segregation affects health outcomes in a multitude of ways. It limits the socioeconomic advancement of minorities through educational quality and employment, and lowers the returns of home ownership due to lower school quality, fewer job opportunities, and lower property values in disadvantaged neighborhoods. Segregation also leads to segregation in health care settings, which in turn is associated with disparities in the quality of treatment (Acevedo-Garcia et al., 2008).
FIGURE 1.4 Racial and ethnic neighborhood disparities. Source: Acevedo-Garcia et al. (2008).
Minorities tend to live in poorer areas (see Figure 1.4), and these disadvantaged neighborhoods are exposed to greater health hazards, including tobacco and alcohol advertisements, toxic waste incinerators, and air pollution. Tiny particles of air pollution contain more hazardous ingredients in non-white and low-income communities than in affluent white ones (Katz, 2012). The greater the concentration of Hispanics, Asians, African Americans, or poor residents in an area, the more likely it is that potentially dangerous compounds such as vanadium, nitrates, and
zinc are in the mix of fine particles they breathe. In a study conducted in 2012, the group with the highest exposure to the largest number of these ingredients was Latinos, while whites generally had the lowest exposure. Economic stress within a community may exacerbate tensions between social groups, magnify workplace stressors, induce maladaptive coping behaviors such as smoking and alcohol use, and translate into individual stress, all of which makes individuals more vulnerable to illness (e.g., depression, high blood pressure). Factors associated with living in poor neighborhoods—crime, noise, traffic, litter, crowding, and physical deterioration—also can cause stress.
Some health issues related to where one lives include the following (Cooper, 2014):
Two to three times as many fast food outlets are located in segregated black neighborhoods than in white neighborhoods of comparable socioeconomic status, contributing to higher black consumption of fatty, salty meals and in turn widening racial disparities in obesity and diabetes.
Black neighborhoods contain two to three times fewer supermarkets than comparable white neighborhoods, creating the kind of “food deserts” that make it difficult for residents who depend on public transportation to purchase the fresh fruits and vegetables that make for a healthy diet.
Fewer African-Americans have ready access to places to work off excess weight that can gradually cause death. A study limited to New York, Maryland and North Carolina found that black neighborhoods were three times more likely to lack recreational facilities where residents could exercise and relieve stress.
Because of “the deliberate placement of polluting factories and toxic waste dumps in minority neighborhoods,” exposure to air pollutants and toxins is five to twenty times higher than in white neighborhoods with the same income levels.
Regardless of their socioeconomic status, African-Americans who live
in segregated communities receive unequal medical care because hospitals serving them have less technology, such as imaging equipment, and fewer specialists, like those in heart surgery and cancer.
Genetics Genetics have been linked to many diseases, including diabetes, cancer, sickle-cell anemia, obesity, cystic fibrosis, hemophilia, Tay-Sachs disease, schizophrenia, and Down syndrome. Currently, about 4,000 genetic disorders are known. Some genetic disorders are a result of a single mutated gene, and other disorders are complex, multifactorial or polygenic mutations. (Multifactorial means that the disease or disorder is likely to be associated with the effects of multiple genes in combination with lifestyle and environmental factors.) Examples of multifactorial disorders are cancer, heart disease, and diabetes. Although numerous studies have linked genetics to health, social and cultural factors play a role as well. For example, smoking may trigger a genetic predisposition to lung cancer, but that gene may not have been expressed if the person did not smoke.
There are concerns about relating genetics and health disparities because race is not truly biologically determined, so the relationship between genetics and race is not clear cut. There are more genetic differences within races than among them, and racial categories do not capture biological distinctiveness. Another problem with linking genetics to race is that many people have a mixed gene pool due to interracial marriages and partnerships. Also, it is difficult at times to determine which diseases are related to genetics and which are related to other factors, such as lifestyle and the environment.
Sometimes disease is caused by a combination of factors. For example, African Americans have been shown to have higher rates of hypertension than whites, but is that difference due to genetics? African Americans tend to consume less potassium than whites and have stress related to discrimination, which could be the cause of their higher rates of
hypertension. Health disparities also can be related to the level of exposure to environmental hazards, such as toxins and carcinogens, that some racial groups are exposed to more than others. Therefore, it is difficult to link health disparities to genetics alone because a variety of factors may be involved. Genetics does play a role in health however, and some clear links have been made, such as people with lighter skin tones being more prone to skin cancer.
Lifestyle Behavior patterns are factors that the individual has more control over. Many of the diseases of the 21st century are caused by personally modifiable factors, such as smoking, poor diet, and physical inactivity. So how does lifestyle relate to ethnicity? Studies reveal that differences in health behaviors exist among racial and ethnic groups. For example, the national Youth Risk Behavior Survey (YRBS) monitors priority health risk behaviors that contribute to the leading causes of death, disability, and social problems among youth and adults in the United States. The national YRBS is conducted every 2 years during the spring semester and provides data representative of 9th through 12th grade students in public and private schools throughout the United States. Data shows racial and ethnic differences in behaviors such as alcohol consumption, use of sunscreen, physical activity levels, substance use, and being injured in a fight.
Social Circumstances Social circumstances include factors such as SES, education level, stress, discrimination, marriage and partnerships, and family roles. SES is made up of a combination of variables including occupation, education, income, wealth, place of residence, and poverty. These variables do not have a direct effect on health, but they do have an indirect effect. For example, low SES does not cause disease, but poor nutrition, limited access to health care, and substandard housing certainly do, and these are just a few
of the many indirect effects. Discrimination does not cause poor health directly either, but it can lead to depression and high blood pressure.
One variable of social circumstances, poverty, can be measured in many ways. One approach is to measure the number of people who are recipients of federal aid programs, such as food stamps, public housing, and Head Start. Another method is through labor statistics, but the most common way is through the federal government’s measure of poverty based on income. The federal government’s definition of poverty is based on a threshold defined by income, and it is updated annually. So how is poverty related to ethnicity?
Poverty rates by race. Source: Data from U.S. Census Bureau (2011).
Poverty is higher among certain racial and ethnic groups (see Figure 1.5) and is a contributing factor to health disparities because poverty affects many factors, including where people live and their access to health care. What may not be surprising is that low SES groups more often act in ways that harm their health than do high SES groups. It is perplexing that some of these unhealthy behaviors are adopted despite the monetary and health costs. For example, smoking cigarettes and alcohol consumption require that the person spend money on these items. Pampel, Krueger, and Denney (2010) noted some important facts related to socioeconomic factors in health behaviors. One example is access to health aids. Adopting many healthy behaviors does not require money, but having more money to pay for tobacco cessation aids, joining fitness clubs and weight loss programs, and buying more expensive fruits, vegetables, and lean meats can help people achieve better health.
Medical Care The shortfalls for minorities in the health care system in the United States can be categorized into three general areas: (1) lack of access to care, (2) lower quality of care, and (3) limited providers with the same ethnic background.
Lack of Access to Medical Care Research has shown that without access to timely and effective preventive care, people may be at risk for potentially avoidable conditions, such as asthma, diabetes, and immunizable conditions (National Center for Health Statistics, 2006). Access to health care is also important for prompt treatment and follow-up to illness and injury.
Access to health care is a problem for many Americans due to lack of health care insurance. According to the National Health Interview Survey
(NHIS), in 2012, 45.5 million persons of all ages (14.7%) were uninsured at the time of interview (Cohen & Martinez, 2013). Access to health care is particularly problematic for minorities because they have higher rates of being uninsured than whites. Based on data from the 2012 NHIS, Hispanics were more likely than non-Hispanic whites, non-Hispanic blacks, and non-Hispanic Asians to be uninsured at the time of interview, to have been uninsured for at least part of the past 12 months, and to have been uninsured for more than a year. More than one quarter of Hispanics were uninsured at the time of interview, and one third had been uninsured for at least part of the past year (Cohen & Martinez, 2013).
The Patient Protection and Affordable Care Act (ACA), passed in 2010, was designed to increase the quality and affordability of health insurance, hence lowering the rate of uninsured. The ACA went into effect on January 1, 2014, but it is too soon to know whether it will achieve this goal.
Lower Quality of Care Despite improvements, differences persist in health care quality among racial and ethnic minority groups. People in low-income families also experience poorer quality care. Disparities in quality of care are common. For example,
Blacks and American Indians and Alaska Natives received worse care than whites for about 40% of measures.
Asians received worse care than whites for about 20% of measures.
Hispanics received worse care than non-Hispanic whites for about 60% of core measures.
Poor people received worse care than high-income people for about 80% of core measures. (Agency for Healthcare Research and Quality, 2011a)
Disparities in access are also common, especially among Hispanics and poor people:
Blacks had worse access to care than whites for one third of core measures.
Asians and American Indians and Alaska Natives had worse access to care than whites for 1 of 5 core measures.
Hispanics had worse access to care than non-Hispanic whites for 5 of 6 core measures.
Poor people had worse access to care than high-income people for all 6 core measures. (Agency for Healthcare Research and Quality, 2011a.)
Examples of core measures include adults 40 and over with diabetes who received their exams, adults over age 50 who received a colonoscopy, and children ages 19 to 35 months who received their vaccines.
Limited Providers With the Same Ethnic Background Ethnic minorities are poorly represented among physicians and other health care professionals. For almost all of the following list of health care occupations, Euro-Mediterraneans and Asians are overrepresented while blacks and Hispanics are underrepresented: physicians and surgeons, registered nurses, licensed practical and licensed vocational nurses, dentists, dental hygienists, dental assistants, pharmacists, occupational therapists, physical therapists, and speech-language pathologists (Agency for Healthcare Research and Quality, 2011b). Two exceptions were noted. Blacks are overrepresented among licensed practical and licensed vocational nurses, and Hispanics are overrepresented among dental assistants. Of the health care occupations tracked, these two require the least amount of education and have the lowest median annual wages (Agency for Healthcare Research and Quality, 2011b). More specifically, although African Americans, Hispanics, and Native Americans make up over a quarter of the nation’s population, in 2007 African Americans accounted for only 3.5%, Hispanics 5%, and Native Americans/Native Alaskans 0.2% of physicians (American College of Physicians, 2010). Similar workforce disparities are found among some Asian subgroups,
such as Samoans and Cambodians (American College of Physicians, 2010).
As a result, minority patients are frequently treated by professionals from a different racial or ethnic background. Many programs, funding agencies, and research studies suggest that more diversity is needed among health care professionals to improve quality of care and reduce health disparities. But is there evidence that racial concordance (patients being treated by people in the same ethnic group) accomplishes these goals?
A comprehensive review of research published between 1980 and 2008 was conducted by Meghani et al. (2009). Twenty-seven studies having at least one research question examining the effect of patient–provider race- concordance on minority patients’ health outcomes and pertained to minorities in the United States were included in this review. Of the 27 studies, patient–provider race-concordance was associated with positive health outcomes for minorities in only 9 studies (33%); 8 studies (30%) found no association of race-concordance with the outcomes studied; and 10 studies (37%) presented mixed findings. The authors concluded that having a provider of same race did not improve “receipt of services” for minorities.
Legal Protections for Ethnic Minorities
Many laws have been passed to help reduce discrimination, including in the health care arena. The Civil Rights Act of 1964 was passed by Congress and signed into law by President Lyndon Baines Johnson. Title VI of the Civil Rights Act prohibits federally funded programs or activities from discriminating on the basis of race, color, or national origin. Federal agencies are responsible for enforcement of this law. In areas involving discrimination in health care, the Office for Civil Rights (OCR) of the Department of Health and Human Services (HHS), is responsible for enforcement. Title VI of the act is the operative section that informs non-discrimination in health care. It has three key elements:
1. It established a national priority against discrimination in the use of federal funds.
2. It authorized federal agencies to establish standards of nondiscrimination.
3. It provided for enforcement by withholding funds or by any other means authorized by law.
Since the Civil Rights Act of 1964 was passed, numerous other statutes and regulations have been created to address discrimination against ethnic minorities in health care, including the Hill-Burton Act. The Hill-Burton Act has been amended a number of times since its inception. The amendment entitled “Community Service Assurance under Title IV of the U.S. Public Health Service Act” requires facilities to provide services to persons living within the service area without discrimination based on race, national origin, color, creed, or any other reason not related to the person’s need for services. The subsequent HHS regulations set forth the requirements with which a Hill-Burton facility must comply (USHHS, Office for Civil Rights, 2006):
A person residing in the Hill-Burton facility’s service area has the right to medical treatment at the facility without regard to race, color, national origin, or creed.
A Hill-Burton facility must post notices informing the public of its community service obligations in English and Spanish. If 10% or more of the households in the service area usually speak a language other than English or Spanish, the facility must translate the notice into that language and post it as well.
A Hill-Burton facility may not deny emergency services to any person residing in the facility’s service area on the grounds that the person is unable to pay for those services.
A Hill-Burton facility may not adopt patient admission policies that have the effect of excluding persons on grounds of race, color, national origin, creed, or any other ground unrelated to the patient’s
need for the service or the availability of the needed service.
Title VI and HHS services regulations require recipients of federal financial assistance from HHS to take reasonable steps to provide meaningful access to limited English proficiency (LEP) persons. Federal financial assistance includes grants, training, use of equipment, donations of surplus property, and other assistance. Recipients of HHS assistance may include hospitals, nursing homes, home health agencies, managed care organizations, universities, and other entities with health or social service research programs. It also may include state Medicaid agencies; state, county, and local welfare agencies; programs for families, youth, and children; Head Start programs; public and private contractors, subcontractors, and vendors; and physicians and other providers who receive federal financial assistance from HHS (USHHS, Office for Civil Rights, n.d.).
Recipients are required to take reasonable steps to ensure meaningful access to their programs and activities by LEP persons. The obligation to provide meaningful access is fact dependent and starts with an individualized assessment that balances four factors: (1) the number or proportion of LEP persons eligible to be served or likely to be encountered by the program or grantee; (2) the frequency with which LEP individuals come into contact with the program; (3) the nature and importance of the program, activity, or service provided by the recipient to its beneficiaries; and (4) the resources available to the grantee/recipient and the costs of interpretation/translation services. There is no “one size fits all” solution for Title VI compliance with respect to LEP persons, and what constitutes “reasonable steps” for large providers may not be reasonable where small providers are concerned (USHHS, Office for Civil Rights, n.d.).
If, after completing the four-factor analysis, a recipient determines that it should provide language assistance services, a recipient may develop an implementation plan to address the identified needs of the LEP populations it serves. Recipients have considerable flexibility in developing this plan. The guidance provides five steps that may be helpful
in designing such a plan: (1) identifying LEP individuals who need language assistance; (2) language assistance measures (such as how staff can obtain services or respond to LEP callers); (3) training staff; (4) providing notice to LEP persons (such as posting signs); and (5) monitoring and updating the LEP plan (USHHS, Office for Civil Rights, n.d.).
Culturally and Linguistically Appropriate Services (CLAS) In compliance with Title VI and the LEP regulations, the HHS Office of Minority Health (OMH) has developed “National Standards for Culturally and Linguistically Appropriate Services in Health Care (CLAS).” In promulgating these standards, OMH provided its rationale for preparing the standards and recommendations for their use. The CLAS standards are intended to advance health equity, improve quality, and help eliminate health care disparities by providing a blueprint for individuals and health and health care organizations to implement culturally and linguistically appropriate services. Adoption of these standards is expected to help advance better health and health care in the United States. The CLAS standards are listed in Table 1.2.
It is worth noting that both federal and state governments have begun addressing the need for cultural competence through various standards and legislation. States are requiring cultural competence education in medical and nursing schools, and legislation in many states includes requiring cultural competence training for health care providers to receive licen-sure or relicensure. Figure 1.6 highlights the states that are proposing to implement cultural competence training.
TABLE 1.2 National CLAS Standards
Source: USHHS, Office of Minority Health (n.d.).
FIGURE 1.6 Map of states with cultural competence legislation.
Personal Health Decisions
Perhaps the area where law and cultural health issues intersect the most is in the area of personal health care decisions. How an individual approaches health care decisions is informed by his or her personal experiences as well as family, religious, and cultural influences. Different cultures approach how to undergo treatment, when to treat, and when to stop treatment differently. Even more important, who will make such decisions for a patient may differ from culture to culture.
Therefore, it is important to understand the legal construct that affects health care decisions. The laws of all the states reflect an individual’s constitutional right to privacy and to make personal decisions free from outside influence. Consequently, the right to make health care decisions is personal to the patient involved, and no one else has the right to interfere. In cultures where family input is sought for such decisions, or a surrogate decision maker is used, this legal principle could create decision-making conflicts. A competent individual can appoint someone else to make decisions for him or her, thus removing the conflict.
The more problematic situation is when the patient is unable to make his or her wishes known because of the patient’s medical condition. In that situation, it is important to have documents prepared in advance that name who will make decisions for the person and what decisions are to be made that are consistent with the person’s cultural beliefs. Health care powers of attorney are documents that appoint who will make decisions for the person if he or she is unable to decide. A living will documents what decisions and desires a person has about his or her care and end-of- life decisions, and it can, and should, include instructions respecting the person’s cultural beliefs. Many states have combined these two documents into one advance health care document that covers all the various decisions. Whatever format is utilized in a particular state, the importance of having these documents remains.
Ethics point to standards or codes of behavior expected by the group to which the individual belongs. Ethics are different from morals in that morality refers to personal character and what the individual believes is right or wrong conduct. For example, a nurse’s moral code may consider murder to be wrong, but the nurse has an ethical obligation to provide services for a murderer if the murderer is a patient in the medical facility.
The legal system is a set of rules and regulations that are binding on the members of a society and that set out what behavior is acceptable.
They are subject to review and change as the society changes. The relationship between law and ethics significantly affects health care decisions and cultural influences. The ethical principles with the most impact on cultural issues in health care are autonomy, nonmaleficence, beneficence, and justice.
Autonomy is the ethical principle that embodies the right of self- determination. It is the right to choose what happens to one’s self and decision making. It is embodied in the concept of informed consent in health care, which is the right to be informed about recommended treatment prior to consent. Autonomy requires that certain conditions exist, including understanding; an absence of controlling influences, which is traditionally understood as liberty; and agency, which is the ability to act intentionally (Beauchamp & Childress, 2001).
For this ethical principle to be achieved, the health care provider must respect and guard the patient’s right to self-determination. This includes informing patients in a manner that considers both cultural and language barriers to understanding. The CLAS standards are an attempt to respect the ethical concept of autonomy. Respect takes into account individuals’ rights to make determinations about their health and to live or die with the consequences. Respect for others does not allow cultural, gender, religious, or racial differences to interfere with that individual right. Respect is evident when the cultural heritage and practices of patients are considered in treatment even when the provider does not share that value.
In respect for autonomy, not only the right to choose is respected, but a right not to choose should be respected as well. Valuing a patient’s right to defer decision making to another person, or not to be informed about the extent of his or her condition, is as essential to the principle of autonomy as ensuring that a patient who desires autonomy is fully informed about his or her treatment options.
Associated with respecting patient autonomy are two principles that should be followed by the caregiver: veracity and fidelity. Veracity involves being truthful and providing necessary information in an honest
way. Fidelity entails keeping one’s promises or commitments. It requires not promising what one cannot do or control. Both of these principles are necessary for patients to be truly informed about their care so they can make autonomous decisions.
Beneficence is the principle that requires doing good or removing harm. It is often intertwined with nonmaleficence, but it is a distinct ethical construct. Beneficence is at work when balancing the risk, benefit, harm, and effectiveness of treatment. When harm is found, positive actions are required to remove or limit it. This ethical principle was at work when segregated hospitals were outlawed by the Civil Rights Act.
Nonmaleficence is the principle that states that one should do no harm. Although simple in concept, it is often difficult in practice. In health care, actions can often cause harm, and very few treatment modalities are completely without risk of harm. Thus the practitioner must weigh the risks and benefits of any treatment.
However, it is the unknown harm that should be addressed in the cultural context. Practitioners should be aware that patients from cultures other than their own may perceive situations as harmful that are not readily apparent to them. For example, physical examination of a female by a male practitioner is considered to be unacceptable in some cultures and can lead to serious consequences for the female patient. Making arrangements for a female examiner would evidence the ethical concept of nonmaleficence.
Justice is the ethical principle that holds that people should be treated equally and fairly. Justice requires that people not be treated differently because of their culture or ethnic background. Justice is also at issue when the allocation and distribution of limited health resources are discussed. Ensuring that health resources are available to all without regard to race or ethnicity is the theory of distributive justice. It is this ethical principle that is breached when care is denied or withheld on racial or ethnic grounds.
The fair opportunity rule of justice states that no one should receive social benefits based on undeserved advantages or be denied benefits on
the basis of disadvantages (Beauchamp & Childress, 2001). Although this may seem fairly straightforward, it becomes difficult to manage when applied to the variances of social inequalities. The rule states that discrimination is not ethically justifiable on the basis of social status or ethnicity.