Racial Attitudes in America and the Effects on Health Disparities: A Perspective
The concept of racial differences and all that this has come to imply is perhaps the single most important social issue in the history of the United States. Since the “discovery” of America in 1492 by Columbus, the importation of the first African slaves in 1619, and the infamous Dred Scott and Plessy decisions in the 1800s that legalized separate status of African Americans, racially-based social, legal and health inequalities have persisted to the present. In fact, during the Civil Rights Movement in the mid-twentieth century, Dr. Martin Luther King famously said, “of all the forms of inequality, injustice in health care is the most shocking and inhumane.”1
Dr. King was referencing a growing body of observations documenting racially and ethnically based disparities in health outcomes. Although these health disparities are associated with race, it is important to note that racial classifications are politically and socially, but not biologically, determined. In fact, contemporary genomic studies have determined that the genetic variations within a so-called racial group may reach 95%, compared to a 5% variation between so-called racial groups.2 Therefore, to explain the unequal burden of disease between whites and other groups, one must consider factors beyond biological differences such as socioeconomic level, cultural and behavior determinants of health status.
Race is, in reality, a socially and politically determined designation. It is also often a surrogate designation for more direct and authentic causes of health disparities. Conceptually, one can consider the effects of poverty and low economic status, interacting with social injustice and cultural factors (i.e. diet, tobacco use, etc.)
To determine how these factors collectively influence important health determinants such as the use of preventive services, early detection of disease, ready access to medical care for accurate diagnosis and treatment, etc. 25 Differences in these health determinants could readily explain important disparities between black and whites in terms of incidence of disease and ultimately mortality. Poverty, acting through the prism of substandard housing, inadequate information and knowledge of disease and preventive practices, risk-promoting lifestyles, attitudes, behaviors, and diminished access to health care can directly influence health status.26 Although there is a wide spectrum of wealth in minority communities, according to the U.S. Census Bureau, 35 million Americans (12% of the US population) are classified as poor, but African Americans and Hispanics comprise 24% and Hispanics 22% of this group. This compares to 8% of whites who are classified as poor.3
Disparities in health between blacks and whites are manifested in all major disease categories and occur in all clinical settings—hospitals, outpatient clinics, emergency departments, operating rooms, and nursing homes. 4-6 Examples of health disparities are shown in Table 1.
Racially Based Disparities in Health Outcomes
Cancer (all sites)
561.2/100,000 white men
696.8/100,000 black men
Death Rates, 1996-2000
249.5/100,000 white men
356.2/100,000 black men
NCI Seer Data, 200319
NCI Seer Data, 200319
Rates of Surgery for Stage I & II disease
76.7 % whites
64 % blacks
5 Year Survival
34.1 % whites
26.4 % black
Bach, NEJM, 19996
% Evaluated for transplant
70.5% white women
50.0 % black women
76.2 % white men
53.9% black men
Ayanian, NEJM, 199916
Likelihood of access to opioids
74% white neighborhood
24% non-white neighborhood
Analgesics for bone fracture
Blacks 66% less likely to receive analgesics than whites
Hispanics twice as likely than whites to receive no analgesics
Morrison, NEJM, 200022
Todd, Ann Emerg Med, 200023
Todd, JAMA, 199324
The impact of these disparities is profound. A recent report observed that if differences in age-adjusted mortality between African Americans and whites were eliminated between 1990 and 2000, then approximately 890,000 African American lives would have been saved.7
A recent Institute of Medicine (IOM) study found that “although myriad sources contribute to these disparities, some evidence suggests that bias, prejudice, and stereotyping on the part of health care providers may contribute to differences in care.”8 These sources of disparity are manifest in all parts of the health care system and involve administrators as well as providers. Bias and stereotyping is likely, in most instances, to be subconscious. For example, one study found that mental health professionals who were “primed with stereotype-laden words” were more likely to evaluate hypothetical patients more negatively than when primed with neutral words.9 Another study noted that doctors rated black patients more negatively than white patients in a number of categories—intelligence, likelihood to abuse drugs and alcohol, likelihood of adherence to treatment recommendations—even after the patients’ income, education and personality factors were described.10 These studies and others support a conclusion of the IOM study, which is “there is considerable empirical evidence that even well-intentioned whites who are not overtly biased and who do not believe that they are prejudice typically demonstrate unconscious implicitly negative racial attitudes and stereotypes.”10(p4) In fact, conditions of clinical uncertainty accentuated by time pressures are features which promote stereotyping,8 making African American patients and their doctors facing the complexity of end-of-life decisions even more vulnerable than in other clinical settings.
The IOM study recommended several approaches to minimizing health disparities. Awareness of the extent and impact of health disparities is essential. Dissemination of cross-cultural educational programs that focus on understanding attitudes, increasing knowledge of different cultures, and acquiring skills to improve communication and caring across cultures is another essential step. More data about specific patient characteristics and outcomes, generated by standardized data collection methods is also critical to overcoming disparities. Many other strategies such as increasing availability of quality translational services; health system changes to decrease care fragmentation and the more widespread utilization of evidence-based clinical practice guidelines must also be incorporated with these core educational and clinical recommendations to have a truly durable impact on improving racially based disparities.8
Death and Dying in Contemporary American Society
Definitions of hospice and palliative care, and current rates of hospice utilization.
Palliative care is a relatively new term, particularly in the United States. There are many published definitions, but essentially all encompass the terms included in the 2002 World Health Organization description of palliative care which is “ an approach which improves quality of life of patients and their families facing life-threatening illness .through the prevention and relief of suffering ... by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”11 This definition is attractive because it emphasizes the comprehensive approach to assessment and care, focuses on the need to attend to suffering, and is does not restrict the need for this type of care exclusively to dying patients.
Hospice care can be considered as subtype of palliative care applied to dying patients and their grieving families. Palliative and hospice care comprise an array of services at the core of which involve around the clock availability of a interdisciplinary team typically consisting of a physician, nurse, nurse aide, chaplain and social worker. The services provided by high-quality palliative care and hospice teams include ongoing communication and care coordination, expertise in symptom assessment and treatment, anticipatory guidance, crises prevention and early management, the provision of spiritual care and advance care planning, and bereavement support for the family. Hospice is a proven model of palliative care delivery for dying patients. Much of palliative care delivered in hospitals and outpatient clinics and offices are delivered by teams of doctors and nurses which are not a part of community-based hospice programs, although there are exceptions. By contrast, more than 90% of hospice care delivered to dying patients is done in the home or nursing home setting. In hospitals and physician offices, most palliative care is delivered by clinicians who are usually not part of community-based hospice teams.
In 2006, there were approximately 2.4 million deaths in the United States, and about 2 million of these can be anticipated. In theory, these 2 million deaths would be appropriate for hospice care. In 2004, there were approximately 3,600 hospices in the United States, and about 1.6 million individuals, representing nearly 60% of eligible patients and families.12 This number has grown by about 44% since 2002 and is likely to increase given the aging of the United States population. Cancer was by far the most common diagnosis associated with hospice entry, accounting for 45% of patients, followed by heart failure, dementia, lung, and kidney disease.
It is worthwhile noting, however, that non-cancer diagnosis accounts for much of the increase in hospice utilization over the past five years. This very respectable growth in hospice services is tempered by the relatively short lengths of stay in hospice care. Under the Medicare Hospice Benefit, patients may enter the hospice up to six months prior to death if two physicians confirm that the individual has a terminal prognosis, and the patient is willing to elect the benefit. Despite this, the median length of stay in hospice programs across the United States in 2004 was only 22 days.
Fewer than 10% of patients utilizing hospice in 2004 were African American, even though they make up more than 13% of the U.S. population, suffering a disproportionately higher mortality than whites.12 The reasons behind this disparity are complex and incompletely understood but will be described in more detail in an accompanying chapter in African American Perspectives in Pain and Palliative Care. The gaps in hospice utilization between blacks and whites persist across age groups.13
End-of-life “movement” in USA in latter 20 th Century
In the past 25 years, in part spurred by the highly publicized “right to die” cases Karen Ann Quinlan in 1985 and the publication of the SUPPORT (Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment) studies in 1995, there has been a remarkable increase in attention to the needs of seriously ill and dying patients.14 This attention has become manifest in several ways. Hospital-based palliative care teams have increased by 90% from 1998-2003, according to the American Hospital Association (AHA) annual survey of hospitals.15 Hospice programs are growing and seeking to expand access to previously underserved ethnic minority populations and to dying children.
The education of physicians, nurses, and social workers to improve their skills and confidence in the practice of palliative medicine has received increased attention, and there are formal curricula available for clinicians which have been endorsed by the major professional organizations representing these disciplines. Physicians can now earn certification in palliative medicine from the College of Hospice and Palliative Medicine,16 and formal designation of the specialty of Palliative Medicine by the American Board of Medical Specialties is anticipated within the next five years.
We have an emerging consensus on the essential aspects of quality end-of-life care, based on evidence obtained from well-designed studies surveying patient and families and health-service research critically evaluating relevant parts of the health care system. A high quality health system should practice patient-centered care at its core, emphasizing and attaining the correct medical diagnosis and customizing evidence-based therapies, particularly pain and symptom management, and should provide non-fragmented treatment, which anticipates and prevents crises whenever possible.
Care should acknowledge and respect the role of the patient in family and community.
The overriding goal is to help the patient live as fully as possible, with the highest possible quality of remaining life. Thus the key domains for quality care at the end of life as emphasized by several researchers and the National Hospice and Palliative Care Association (NHPCO) include pain and symptom management, shared decision making, a focus on patient satisfaction, and coordinated, non-fragmented care, ultimately leading to safe and comfortable dying, self-determined life closure and effective grieving for the family left behind.17
Realities of death and dying for African Americans
Given the background detailed in the prior section, we can now place the contemporary circumstances of African American patients and families in perspective. An undeniable reality of the legacy of societal and medical racism and its lingering effects into the 21st Century is the persistent gap in death rates and life expectancy between blacks and whites in the United States. Although deaths rates from all causes fell consistently for blacks and whites in the second half of the twenty century, blacks continued to die at 1.5 times the rate as whites (see Table 2).
Mortality Rates-All Causes, 1950-1998
In 2003, the age-adjusted death rate for the black population was still 30% higher (1.3 times greater) than the white population.18 There are many reasons for this persistent gap, including differences in rates of health insurance, which are critical to access to health care services; a greater likelihood of advanced stages of cancer and HIV-AIDS in blacks vs. whites at time of presentation for medical care; higher rates of tobacco and alcohol use in blacks vs. whites; and generally lower rates of utilization of health-promoting lifestyles and use of preventive measures. As indicated earlier, these socioeconomic circumstances and health behaviors have at their root complex interactions between race, culture and poverty.
For example, cancer death rates for the years 1996-2000 were 356 per 100,000 African American men, compared to 249 per 100,000 white men.19 It is also true that poor Americans, irrespective of race, have a 10% to 15% lower 5-year cancer survival than wealthier Americans.20 Many African Americans share a similar cultural background, if culture is defined by characteristics such as a shared communication system, similar physical and social environments, common beliefs, values, traditions, and world view leading to similar lifestyles, attitudes, and—most importantly—behaviors.25 Acting additively or synergistically, the factors of poverty and culture influence the social environment in which one lives as well as access to information and knowledge and may be associated with the engagement of risk-promoting behaviors (e.g., tobacco use, consumption of high-fat diets). When one then adds greater probability of diminished access to health care, it is not difficult to understand how these circumstances could lead to higher cancer incidents and decreased survival.
Superimposed on the above are the effects of unequal treatment documented in the IOM report.8 Thus the manifestation of these profound health inequalities occurs, in part, because health care providers see their patients (consciously and subconsciously) through the powerful lens of race. This often leads to false assumptions that result in serious harm. The unequal burden of disease in our society is a challenge to our scientific and medical abilities, vision, and presents a profound moral and ethical dilemma for our society.
Concluding Thoughts—Disparities & Implications for End-of-Life decision-making
The greater mortality rates from almost all diseases for blacks compared to whites must be considered in clinical and health policy considerations concerning end-of-life care and decision-making. Almost all frameworks that evaluate the quality of end-of-life care include the components of symptom management, spiritual and personal growth, death in a familiar setting, surrounded by family and loved ones; understanding information to guide decision-making and planning; confidence that one will not be a financial, emotional or physical burden, and the right of self-determination and control of treatment decisions and choices.21 The effects of racism and poverty and the associated marginalization compromise the attainment of quality caring in these domains of end-of-life care. The challenge for clinicians and policy makers is to overcome this ultimate of inequalities in health care.
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