November 30, 1999
What is culture? Culture refers to learned patterns of behaviors, beliefs and values shared by individuals in a particular social group. It provides human beings with both their identity and a framework for understanding experience.1 When we refer to culture in its broadest sense, we usually think about a group of people with similar ethnic background, language, religion, family values, and life views.
Culture and nationality, however, are not synonymous. The United States, for example, is a country made up of individuals from many countries and traditions, each with a unique culture. For many years we have viewed this country as the great "melting pot" of the world; however this vision is being rejected.2 The truth is that the U.S. is a multicultural or pluralistic society, made up of members of different ethnic, racial, religious or social groups, living side by side, sharing aspects of the dominant U.S. culture, but maintaining their own values and traditions.
In his acclaimed book, How We Die, S.B. Nuland said
There has never been a disease so devastating as AIDS. Medical science has never before confronted a microbe that destroys the very cells of the immune system whose job it is to coordinate the body's resistance to it.7
As the HIV epidemic enters its third decade, rates of infection continue to rise in much of the world and in certain minority communities in the U.S. While HIV has only recently ceased to be the leading cause of death for persons between 25 and 44 in the U.S.,8 this is not the case in many parts of the developing world, particularly sub-Saharan Africa. In the U.S., HIV is rapidly becoming a disease of minorities, particularly African Americans and Hispanics.
Considering the impact of culture is very important in managing HIV disease. Today, as earlier in the epidemic, a diagnosis of HIV infection or AIDS is universally feared. The consequences of HIV are well known and they are usually associated with increasing debilitation and suffering as the disease progresses. In addition, HIV often has psychosocial consequences for the patient and can lead to subtle or overt discrimination, abandonment by family and peers, loss of employment and other negative consequences. In spite of the advances in medical management of HIV, it remains an incurable condition. Often, the diagnosis brings to the forefront issues such as homosexuality or substance abuse, which many patients have concealed from their loved ones. How patients confront these issues is affected by their culture. Therefore, if we are to provide appropriate and effective palliative care for persons with HIV/AIDS it is important that we have an understanding of the cultural context within which such care will be provided. It is beyond the scope of this chapter to cover all or even any culture in the U.S. in depth. The intent of focusing on Hispanic and African American cultures is, rather, to increase familiarity with some important aspects of these cultures as well as to exemplify the importance that cultural variables can play in the delivery of palliative care.
Hispanic Cultural Values and HIV Disease
In 1990, the Census Bureau reported that there were about 22 million Hispanic Americans in the U.S., comprising about 9% of the total population. In the subsequent decade, the Hispanic population grew an estimated 58% to represent about 31 million of the country's residents. Hispanics will soon surpass African Americans as the largest minority group in the country.
The first point that must be considered when referring to Hispanics is that the term is a label of convenience for a cultural group with a common cultural heritage stemming from Spain's colonization of the Americas.9 Hispanics can be of any racial group (e.g., indigenous American, Negroid, Asian, Caucasian, or of multiple racial ancestry). Hispanics include several subgroups, each with important social and cultural differences. The major Hispanic subgroups in the United States traditionally have been Mexican Americans, Puerto Ricans and Cubans. However, the dramatic increase in Hispanics observed in the 2000 census was fueled primarily by immigration from Central and South America.
There are some differences among Hispanic subgroups, related to country of origin, that country's racial/ethnic makeup, different histories of immigration to this country, or, as in the case of Puerto Rico, the population's experience with colonization.10 However, these subgroups share a common language, religion, traditional family structure, and several common Hispanic values. Incidentally, Brazilians, a product of Portugal's colonization in the Americas, speak Portuguese, and are therefore not Hispanic; however, they too are emigrating to the U.S. in significant numbers and share many family values and cultural, racial, and religious characteristics with Hispanics.
In addition to differences in subgroups, Hispanics in the U.S. also differ in terms of their level of acculturation or assimilation into mainstream culture. Language use is one very good example of these differences. For instance, while many Hispanics in the United States are bilingual, the degree to which they speak either Spanish or English varies considerably. It can range from virtually no English in recent immigrants and many of the elderly, to full bilingualism in acculturated Hispanics, to very limited Spanish in second and third generation Hispanics. These patterns are observed across different Hispanic cultures.
One value shared by most Hispanics is their religion. Although individuals' degree of practice and church participation varies, the majority of Hispanics are Christian, predominantly Roman Catholic.11 However, many Hispanics practice other religious beliefs that they have incorporated into their Christianity, such as forms of ancestor worship with rituals dating back to pre-Columbian times in Central American Indians. Many Caribbean Hispanics practice Santería, a syncretism of Catholicism and the Yoruba religion brought to Cuba by African slaves.12 Hispanic religious/spiritual beliefs include views on dying and death. For example, it is common to hold a continued vigil over an older family member with a terminal illness. After death, it is common practice to offer daily masses or light candles in honor of the deceased.13 These and other practices honor the loved one and form part of the bereavement ritual.
Family plays a very strong role for most Hispanics, with ties that exist within an extended network of uncles, aunts, cousins, grandparents, and family friends.14 Included in the important role the family plays is the concept of familismo, emphasis of the family welfare over that of the individual.
In addition to language, religion and family, there are five more cultural themes that influence Hispanic culture. These are the following:
An example of the importance of understanding the interaction between Hispanic culture and HIV disease is the impact of cultural values upon beliefs and norms around homosexuality. This is an important issue because the majority of HIV and AIDS cases among Hispanics are men who have sex with men.17 Rafael Diaz, in his book Latino Gay Men and HIV, identified several cultural barriers or competing factors that will have a direct impact on gay and bisexual Hispanic men with HIV/AIDS. Among them we have familismo, poverty, and racism.18 While familismo leads Hispanics to care and support family members, it can become a source of conflict, isolation and abandonment, if homosexuality is perceived as immoral or shameful.18 Furthermore, the marginalization caused by poverty and racism will lead Hispanics to self-perceptions of powerlessness, and this, coupled with fatalism, will prevent many from seeking adequate medical care.
End-of-Life Care Preferences
How do Hispanic values, beliefs and practices influence end-of-life preferences? While research is limited, we will review the following: patient autonomy, advance directives, life-prolonging treatments, and the role of hospice. It must be noted, however, that these studies reflect end of life issues in general, not specifically related to HIV/AIDS. The stigmatic nature of this illness cannot be overlooked, and would have a direct impact on some patient preferences.
In a study in Los Angeles comparing Mexican, Korean, African, and European Americans on several issues relating to patient autonomy, researchers found that Mexican and Korean Americans were less likely to believe that a patient should be told about a terminal diagnosis or make decisions about using life support. Instead, the researchers found that Mexican and Korean American elders were more likely than African and European American elders to want family members to make these decisions.19
This study also found differences among Mexican Americans by income, degree of acculturation, and age; that is, younger and more acculturated respondents and those with higher incomes were more likely to favor truth-telling about the diagnosis.19 In a series of focus groups exploring general medical treatment decisions with a random sample of 50 Mexican American elders in San Antonio, Talamantes and Gomez found that 46% of the elders wanted their doctor to make these decisions, 24% would prefer to make their own decisions, and 18% would discuss the decision with their families. When asked whether it bothered them to talk with their families about these issues, 84% said that it did not.20
The aforementioned Los Angeles study on patient autonomy among Mexican, Korean, African and European Americans also compared knowledge on completion of advance directives. They found that while Mexican and European Americans were significantly more knowledgeable than Korean and African Americans on advance directives, only 22% of the Mexican Americans actually possessed advance directives, in comparison to 40% of the European Americans. They also found that the Mexican Americans who had advance directives were more highly acculturated than the ones who did not.21 Three years earlier, at the University of Miami in Florida, Caralis, Davis, Wright, and Marcial had conducted a multicultural study examining the influence of ethnicity on attitudes toward advance directives, life-prolonging treatments and euthanasia. Regarding advance directives, the researchers found that Hispanic Americans, the majority being of Cuban heritage, were less knowledgeable than African and non-Hispanic white Americans regarding living wills.22
When it came to the issue of life-prolonging treatments at the end of life, Caralis, et al. found that Hispanic and African Americans were more likely than non-Hispanic whites to report wanting their doctors to keep them alive regardless of how ill they were (42% and 37% vs. 14%, respectively). Furthermore, only 59% of Hispanics and 63% of African Americans agreed to stop life-prolonging treatment, compared to 89% of non-Hispanic whites.22 This disparity may have been due partly to the Bible commandment "Thou shalt not kill;" a religious Christian might interpret withdrawing or withholding treatment as an infraction of this commandment.
A few studies have suggested that Hispanics are low users of hospice services. This may be due to unfamiliarity with hospice, insurance coverage issues, language barriers, unpleasant experiences with or distrust of the health care system.23 In addition, Wallace and Lew-Ting proposed that the low utilization of hospice among Hispanics may be due to physician referral patterns; that is, a physician might not refer Hispanic patients to hospice because they observe families providing care themselves and believe that hospice might be unnecessary or culturally inappropriate.24
Taking into account Hispanic core values, aforementioned barriers, and end-of-life preferences, what can the health care provider do to improve palliative care for the Hispanic client? First, it is important that health care professionals increase their knowledge about Hispanic culture, by becoming familiar with the history of the subgroups they are dealing with, along with the family, social, and religious values associated with Hispanic culture. This as well as learning to speak Spanish will help providers display respect and build trust.10
Second, the provider should include family members in discussions with the patient regarding palliative care. Needless to say, there may be situations in which the patient may not desire to have the family included, and this, of course, should be respected.15
Finally, it is important to have open and clear communication with the patient and family, since deference and respect to the provider due to jerarquismo may lead the Hispanic patient to withhold information or hesitate to communicate honestly. The provider must ascertain whether the patient understands the treatment being offered, and whether he or she fully agrees with the treatment plan.25 This is particularly important when it comes to end of life decisionmaking and advance directives, as research indicates that there are several factors that discourage discussions on these topics.22, 23, 19Jerarquismo may lead the patient and family to have unrealistic expectations as to what conventional treatment can offer. The family may be expecting a miracle cure for the terminally ill patient, and thus may refuse to consider palliative care treatment options. Further, perceived conflicts between the patient's religion and withdrawing or withholding of treatment may be addressed and clarified by including a clergy member in decisionmaking.
The role of community education cannot be overstated, particularly when one considers the degree of marginalization many Hispanics face due to language, racism and other socio-economic barriers, including legal status. Education should be provided directly by the health care team because of the value placed on personalismo, and the target audience should include the entire community: patients, families, and community leaders, including clergy. The provider can share with the Hispanic community not only general information about HIV/AIDS, but also information about end-of-life issues, palliative care and the role of hospice. Education can also be enhanced by identifying members of the community living with HIV/AIDS to serve as role models to share their own experiences with the illness. The provider should not rely on brochures alone for education, since the language used in many brochures may be above the reading level of many Hispanics, may only exist in English, or may be poorly translated.26
African American Culture and HIV Disease
In 2000, the population of the U.S. was approximately 281 million, of which 35 million were African Americans. They are the largest minority group in the U.S. While the term African American refers to a racial group, like Hispanics, they are heterogeneous and are comprised of several subgroups. Most African Americans are the descendants of slaves and were part of the U.S. population even before this country's independence from England. Some are immigrants from other places in the Americas, particularly the West Indies. More recently, there has been an influx of immigrants from the African continent. To one degree or another, African Americans share a legacy of slavery, segregation, and discrimination, and like most minorities, they experience a high degree of unemployment and overall poverty.28
These challenges are reflected in a lower life expectancy and higher death rate for African Americans. In a 1996 CDC report, the 1993 age-adjusted death rates for African Americans were higher than those for the Caucasian population for all causes of death combined and for eight of the 10 leading causes of death. Life expectancy for African American males was 8.5 years less than that for Caucasian males; this difference is attributed to higher death rates for homicide, heart disease, cancer, HIV/AIDS and perinatal conditions.29 The life expectancy for African American females was 5.8 years less than that for Caucasian females for similar conditions. And while African Americans only represent 13% of the American population, the number and proportion of annual AIDS cases reported among African Americans exceeded that among whites. The CDC HIV/AIDS Surveillance Report for 2000 reported 13,218 new cases of AIDS in African American males, versus 11,466 in non-Hispanic Caucasians and 6,285 in Hispanics.17
African American Core Values
Despite a long history of adversity, African Americans have remained strongly bound together by the importance they place on family, which they view as an extended network of kin and community,30 and a series of core values described by Sudarkasa as the Seven Rs,31 defined as follows:
The Role of Religion
Religion is another core value among African Americans, just as it is among Hispanics. Historically, the church has been the center of the African American community serving as the single most important institution advocating improvements in health, education, and financial welfare:32
As the center for the extended family, reinforcing the sense of self and self-esteem within the culture, the church offers opportunities for the whole family's development.33
While the majority of African Americans are Protestant Christians, a large proportion being Baptist, some are Roman Catholic.34 Certain African American subgroups, however, such as those from Haiti, have beliefs in voodoo, hexes, curses, which will also have a direct effect on health care views and practices. The history of deportation from the African continent, slavery and oppression in the new world, coupled with their Christian heritage, have determined how African Americans view end of life decisions. Many believe in the God of the Old Testament, an all-powerful and fighting God, who liberated the Hebrews from the oppression of the Egyptians, and who liberated African Americans from slavery. From this comes the notion of divine rescue and thus the belief that God's power can conquer all and that miraculous interventions can occur when all hope seems lost.35 The notion of divine intervention and rescue might influence patients to oppose continuing aggressive medical treatment, in order to allow "God's will" to be done.36
End-of-Life Care Preferences
How does the African American experience influence end-of-life care preferences? Research findings indicate that African Americans are less likely than other groups to trust health care providers, communicate treatment preferences, complete advance directives, and withhold/withdraw life-prolonging treatments in the face of futility.
Issues of Trust
The long history of past and even current discrimination has led African Americans to display distrust in the institutions established by the dominant Caucasian society, including those institutions that provide health care. This institutional distrust is not without foundation, as there are several studies which document minorities' lack of access to available health care. Studies have suggested that certain procedures such as coronary bypass operations and organ transplants have been performed less frequently on African Americans than on Caucasian Americans.37 A study documented lower survival rates in African Americans with Stage I lung cancer, the second most common cause of death among African Americans, and suggested that this was in part due to lower referral rates for African Americans for potentially curative surgical procedures as compared to Caucasian Americans.38, 39
Some authors have suggested that these differences are due to discriminatory practices that have led African Americans not to trust Caucasians or their social institutions.40 The 40-year-old Tuskegee Syphilis Study, in which the U.S. Public Health Service lied to and denied standard treatment to 400 poor African American sharecroppers, is a reminder of why African Americans feel they cannot trust the health care system. In fact, one recent study of 520 African American males sampled door-to-door showed that 27% believed that HIV/AIDS was a government conspiracy against black people.41
Discriminatory practices also extend to pain management. In studies in various medical settings, such as emergency rooms42, 43 and cancer centers,44, 45 pain severity was more likely to be underestimated and effective analgesia less likely to be prescribed for African Americans and Hispanics than for Caucasian Americans. These and other studies clearly document a racial bias on the part of medical care providers. Thus the distrust demonstrated by African Americans is warranted, as subtle discrimination continues.46 In addition, the studies document that the medical care received by minorities is less than optimal, which has led to African American distrust of health care institutions and has affected how African Americans view end of life care.
Communication of Treatment Preferences
The same distrust appears to have inhibited many African Americans from effectively communicating end of life decisions. In a study of communication of treatment preferences among 1,031 AIDS patients, researchers found that Caucasian patients were twice as likely as African American patients to have discussed their treatment preferences with their physicians. Perhaps not coincidentally, the study also found that African Americans were half as likely as Caucasians to prefer a treatment approach that focused on pain relief as opposed to extending life.47 Suspicion about proposed palliative treatments may deter African American patients from honest, open communication with health care providers. Without adequate communication, the patient and family inadvertently give the decisionmaking power to the health care provider, which becomes a form of "paternalism by permission"48 and decreases patient autonomy.
A retrospective chart review of 1,193 frail elderly in South Carolina found that African Americans were less likely than Caucasians or Hispanics to have completed advance directives,49 while in another study African Americans were less likely than Caucasians or Asians to complete durable power of attorney for health care.50 While reasons for this are several, lack of access to medical care in general is of primary importance. If an advance directive to withhold life-prolonging therapies is seen by African Americans as yet another way of limiting their access to adequate health care, then they might be more inclined not to complete one.51
Along with the decreased use of advance directives among African Americans is a low use of hospice services when compared to Caucasians. This is partially due to lack of access to and lack of education regarding hospice care.52
In an article concerning the implementation of the Patient Self-Determination Act of 1991, Young and Jex pointed out that African Americans tend to equate life support with life, and view the withholding of any life-sustaining therapies as another attempt at genocide by the system.53 Therefore, African Americans might be reluctant to consider palliative care as a treatment option for fear that it might result in neglect or being allowed to die prematurely.28
In a study comparing attitudes toward life-prolonging treatments among 139 patients at a general medicine clinic, only 63% of African Americans approved of stopping life-prolonging treatments, compared to 89% of Caucasians. Furthermore, 35% of Caucasians approved of physician-assisted suicide, compared with only 16% of African Americans.22 Finally, Caralis, et al. in their 1993 study found that African Americans were more likely than the general population to choose life-prolonging treatments, even in the face of a poor outcome.22
In view of the long history of discrimination to which African Americans have been subjected over the years, the single most important intervention that must be made is to develop a sense of trust and reliability. This ongoing process will require open and continuous communication between the health care provider and the African American community. The recruitment of more African American health care providers, preferably members of the local community, will help overcome distrust of institutions by the African American community, and will establish better lines of communication between the community and the health care organization. Community-based organizations should be developed to identify and address the specific health care concerns of local African American communities.
One such organization is the Harlem Palliative Care Network in New York City, whose specific objectives are as follows:
Since research has shown that many African Americans lack knowledge about palliative care and hospice programs,55 education is of prime importance. Physicians should be included in education because many lack knowledge of the broad range of palliative care interventions, particularly pain management. For this there are resources for up-to-date training on palliative care, such as Education for Physicians in End of Life Care (EPEC), www.epec.net.
Because religion and spirituality play such important roles in the African American community, the involvement and education of the clergy and local church community cannot be overemphasized. This education should include prevention, intervention and life enhancement in HIV/AIDS. It should also include a thorough understanding of palliative care and the role of hospice. Thus empowered, the church will be able to deal with controversial issues associated with HIV/AIDS, such as drug abuse, sexual promiscuity and homosexuality, as well as help African Americans overcome the perception that palliative care treatment modalities are an abandonment of care.56 The church can provide not only spiritual support, but also, practical social support through its various lay organizations.
Finally, whenever possible, recognition should be made of the role African American family members play in the treatment, care, and support of patients living with HIV/AIDS. It is in the family and the core values that bind it together that African American patients will find the strength and support they need to face end-of-life issues.
While health care providers treating persons with HIV/AIDS cannot become familiar with every cultural issue related to medicine, they can become more sensitive to the role that culture plays in how people access and experience palliative care services. Recognizing the role of culture and being familiar with the core values of a cultural group will not only aid in eliminating barriers to treatment, but also optimize patient care, particularly end-of-life care.
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