Black Death: The Failure of the Public Health Community to Support African-Americans Making End-of-Life Decisions – Sarah Baker

One year ago, I watched my grandfather die. I stood at the foot of the bed, and watched him draw each slow, raspy breath until they simply ceased. He died what many think might be a “good death”: in his bed, surrounded by his family and loved ones, with no machines, no tubes, and only a little bit of morphine now and then. Most anthropologists would say that my grandfather’s idea of a “good death,” like most health beliefs and behaviors, can be attributed to social and cultural factors (1) and applying the theory of cultural relativism we might argue that other choices at the end-of-life should be respected as my grandfather’s were(2).

There has been a great deal of interest in healthcare disparities at the end-of-life as they are the invert of the disparities that exist in at other times: during the last 12 months of life African-Americans receive more intensive treatments than whites, whereas white survivors receive more intensive treatment than African-American survivors (3). African-Americans are also more likely to die in the hospital, (4) and less likely to use hospice (5). A number of researchers and popular media would argue that this difference is cultural and for a variety of historical and cultural reasons African-Americans simply prefer more aggressive treatments (6, 7). Does this mean we are simply respecting the wishes of dying African-Americans and giving them culturally appropriate treatments? Or is this disparity, like so many others, an example of a minority group receiving sub-standard healthcare from a system wrought with prejudice and uneven access? Most importantly, has the public health community succeeded in supporting and educating African-Americans in a culturally appropriate manner?

The current system of advance care planning is reliant on a communicative, trusting patient-physician relationship where a physician can clearly explain treatment options and respect a patient’s choices. African-Americans experience a number of barriers to this type of relationship. Many lack confidence in the medical community to have the necessary trust in their physicians (8, 9). Many also lack a primary care physician to advocate for them during critical periods (10). Finally, studies have shown that minority patients, including African-Americans, experience more difficulty with respect for their preferences than whites (11, 12, 13, 14). Clearly end-of-life decisions are personal choices, but they are also medical choices and the public health community needs to apply an anthropological approach to the development of education and outreach to African-American about end-of-life decisions.

TRUST & RAPPORT

In surveys of terminally ill patients, open communication with a physician is considered most important at the end of life (15). This communication has been inhibited by mistrust in the medical community built through a history of abuses. Though the Tuskegee experiment is the most often cited reason for African-American’s mistrust of the medical system, the abuses go much farther back and are far more insidious than the infamous Alabama study. Horrifying medical experiments were regularly performed on slaves, and black cadavers were almost exclusively used for dissection by medical students (16). Qualitative studies have also shown that young African Americans not familiar with the Tuskegee experiment also exhibit distrust in the medical community that is assumed from elders in their community (17).

A patient and his or her family needs to openly discuss end-of-life treatment choices and personal values and preferences with their medical team. The historical treatment of blacks in the medical system has hindered their ability to have these conversations with their physicians. Indeed, studies have shown that racial disparities are greatest for treatments that require counseling (18). Using an anthropological perspective of understanding both the behavior and the broader context in which it occurs allows us to see that these disparities in end-of-life care are not simply the effect of varying preferences across diverse groups, but instead are another effect of the lack of trust between African-Americans and their medical providers.

While work remains to overcome the issues of mistrust of the medical community, the public health community should develop other venues apart from typical medical environments where end-of-life education and communication can occur. African-Americans need to have confidence in the information they receive about medical conditions and end-of-life treatment options so that decisions are made based on personal choice and not fear or suspicion.

ACCESS

The issue of racial disparities in access to medical care takes two main forms: disparities in healthcare insurance and access to primary care physicians, and the geographic disparities that affect the type of care patients will receive when they visit their local hospitals. One recent study shows that the uninsured rates for African-Americans and Hispanics are one and a half to three times as high as that of whites. African-Americans are also more likely to use the emergency room to treat a condition that could have been treated by a primary care doctor (19). Lack of insurance and over-use of the emergency room prevent African-Americans from developing the relationships with primary care physicians that are necessary in the construction of an advance care plan that is patient-centered and takes into account the patient’s preferences and beliefs.

Care at end-of-life is also impacted by the geographic disparities that exist in the treatment of conditions, and African-Americans may not be “choosing” aggressive end-of-life treatment and instead they are passive victims of the hospital system where they are living. Barnato et al showed that the majority of observed differences in terminal ICU use among African-Americans and Hispanics were attributable to their use of hospitals with higher ICU use rather than to racial differences in ICU use within the same hospital (20). Disparities in treatment were also found to be much greater for treatments that require a measure of counseling, which are communication sensitive (21). Understanding the variation in local hospital systems is essential in understanding these statistics in the treatment “choices” that African-Americans are making. The systems that most African-Americans access are inherently different due to geographic disparities and relying on physicians and hospitals to provider the highest quality end-of-life care to African-Americans is doing a great disservice to this population.

RESPECT & UNDERSTANDING

A number of studies show minority patients perceive more bias and lack of cultural competence by providers than do whites (22). These perceptions have a direct effect on whether a patient follows advice or not, where a patient is less likely to follow the advice of a doctor if he or she perceives bias or lack of cultural competence (23). African-American patients also report more problems with respect for preferences and more problems with information and education (24). Finally, African-Americans also report the highest dissatisfaction rates with healthcare out of any group (25). This perceived racial bias and disrespect for preferences prevents African-Americans from effectively communicating with their providers, and hospitals lack the ability to effectively educate minority populations about healthcare. The claim that African-Americans simply prefer more aggressive treatment options becomes highly suspect when we view the statistics through this lens of bias and disrespect for personal preferences.

This bias, combined with reports by residents that they are unprepared to provide cross cultural care (26) and repeated studies about physicians’ cultural incompetence (27) means that there are gaping divides between African-Americans and their physicians. Individual providers need to be trained in cross-cultural communication, and hospital systems need to be better trained in how to educate these populations. Meanwhile, other channels should be employed to communicate and educate minorities about end-of-life care and treatment choices. The current system relies on physicians and hospitals to communicate end-of-life options to African-Americans, understand their preferences, and respect their choices. Providers have proven to be ineffectual in all three of these areas and thus it is up to the public health community to help fill the void.

CONCLUSIONS

Anthropological theory emphasizes that any health behavior cannot be separated from the larger social and cultural context in which they occur (28). African-Americans are operating in a system that has historically been abusive to them, does not allow them equal treatment or access to services, and has been shown to be incompetent in communicating cross-culturally. Clearly while operating in this system it is difficult to determine if their choices at the end-of-life are truly influenced by their own personal preferences and beliefs, or if they are decisions made through fear, misinformation, or lack of access to care.

The public health community has continued to let African-Americans and other minorities flounder in this system that has the odds stacked against them. While systemic changes are needed to make the healthcare system equitable for all, these changes have been en-route for years with very little effect; they are not helping the thousands of African-Americans dying in hospitals today, in pain and undergoing or foregoing treatments they may or may not want. Until these changes occur, more needs to be done to support minorities and educate them about treatment options at the end-of-life through channels that they trust, and in language that they understand.

This movement needs to come from within the black community; from local religious organizations, thought-leaders, and popular black media. The goal is not to push anyone towards one treatment option or another, but to ensure that the decisions made are well-informed decisions, as choice becomes meaningless if one does not truly understand the options. Each patient needs to understand his or her options, recognizes pros and cons, has considered his or her personal preferences, and understands how to find a provider that is best suited to these preferences.

My grandfather ostensibly could have been “saved;” he had pneumonia that went untreated. He died a “good death” not because slipped away peacefully, but because he truly understood the repercussions of the decisions he had to make, and the choice was truly the one he wanted.

REFERENCES

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24. LeRoi H, Ayanian J, Orav E, et al. Is hospital service associated with racial and ethnic disparities in experiences with hospital care? The American Journal of Medicine 2005; 118, 529.
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