Various definitions of culture exist in the literature. Helman defines culture as “a set of guidelines (both explicit and implicit) which individuals inherit as members of a particular society, and which tells them how to view the world, how to experience it emotionally, and how to behave in it in relation to other people, to supernatural forces or gods, and to the natural environment” (2). This definition suggests culture, as a noun, exists as a pervasive set of guidelines shaping the individual. Culture, as a verb, is in fact more than an inheritance; it is a dynamic process wherein people interact with each other and thereby actively create an ever-changing world experience. Culture can also be viewed as a complex and overlapping set of descriptors, adjectives and adverbs, giving meaning, shading, and even texture to various patterns of human organization and behavior.

Recent American national consensus guidelines identified cultural aspects of care as one of the eight domains of palliative care, highlighting their importance (3). Criteria under this domain are outlined in Table 47.1. Although the criteria list is short, it suggests a broad array of concerns to be addressed: knowledge of and sensitivity to cultural backgrounds, awareness regarding cultural influences on bioethics and communication skills, and system issues. At both the clinician and the program level the challenge is taking such a list and translating it into discrete skills and actions that will result in more culturally effective care. Before considering specific interventions, let us consider why culture is so important in palliative care.

We live in an increasingly pluralistic society, although the extent of diversity varies dramatically by geographic region. Pluralism exists not only in terms of ethnicity but other cultural attributes. National and geographic origin, current home (geographic location, urban/rural), gender, sexual orientation, marital status, family, professional and community roles, religion, economic and educational status—these cultural attributes and others contribute to our cultural personae (4). Social factors associated with these attributes can create barriers to care, limiting the availability and effectiveness of palliative care for certain populations. Pluralism also exists among health care workers (5). When people become chronically ill, they are more likely to come under the care of clinicians and others from very different backgrounds than their own (6, 7). Relationships in such situations are often imposed. That is, health care workers, whether physicians working in an intensive care unit or nurse’s aides in a nursing home, and patients have limited choices as to who will care for whom. Because hands-on care, such as that provided by nurse’s aides, is devalued in our society, immigrant and underclass workers make up a substantial portion of this workforce. These workers have little choice but to accept positions at the bottom of the social ladder, which in our society includes the provision of the most intimate care for chronically ill and dying patients. Conversely, patients and families are increasingly dependent upon care provided by such workers. Imposed relationships at such a fragile stage in the life cycle can create a problematic environment. Efforts to understand each other are not only desirable, but also essential.

Although culture lurks in the background of all human experience, it comes alive and overt during transition periods in the human life cycle. Death and dying are obviously major transitions and as such are heavily invested with culture. Cultural transitions are often marked by ritual and rites wherein meaning is expressed and created through particular behaviors. Beyond this, ritual is used to change reality or at least to create a particular human expression of reality. Rites and rituals related to palliative care are most obvious in considering death and dying practices (8). More subtle may be myriad behaviors, some of a very personal nature, that are used to cope with transitions in chronic illness. For example, ritual is involved in the process of making a person a patient in a hospital. Wristbands and hospital gowns serve ritual purposes
beyond mere technical efficiency. The ritual use of wigs or caps after hair loss through chemotherapy is another example that may serve the purpose of maintaining a certain image of self (in addition to keeping one’s head warm). Conversely, “going bald” after hair loss may serve a ritual purpose of declaring acceptance as a new member of a class of cancer patients. Clinicians also engage in ritual behavior. For example, death pronouncement is more a ritual than a diagnosis of death (9). The importance of ritual as a cultural activity related to dying (and birth) is highlighted by Grimes in his book, Deeply into the Bone—Reinventing Rites of Passage.

Culture shapes how we relate to and communicate about major aspects of life, including serious and chronic illness. As discussed further in the subsequent text, if clinicians, patients, and families approach illness from differing cultural perspectives, miscommunication is almost inevitable, barring serious efforts to compensate for such differences. Finally, culture is inexorably intertwined with society and the health care system. It would be a mistake to view “culture” as a disembodied set of beliefs and practices, somehow separate from the social and organizational forces that shape our lives. As will be discussed at the end of the chapter, understanding this relationship and effecting systemic change may be one of the most effective ways to improve cross-cultural outcomes.

Most clinician training regarding culture has focused on ethnicity, as have many palliative care texts and articles (10). The tendency in many such texts is to describe beliefs and practices of particular ethnic groups relative to health care. Lipson, for example, provides overviews of how 24 ethnic groups construct illness, relate to symptoms such as pain, decision-making, relations with clinicians, preparations for dying, grief practices, and death rites, among others (11). Although this and similar texts may be helpful to clinicians struggling to care for patients from very foreign ethnic groups, some caution is in order. Excessive reliance on such texts risks stereotyping by underestimating the extent of cultural diversity within ethnic groups (12). Culture tends to be portrayed more as a determinant thing, such as a genetic code, rather than an active process of social engagement. An exclusive focus on ethnicity and associated beliefs and practices also tends to narrowly define culture and limits the ability to appreciate other important aspects of culture (5, 13). Problematic, cross-cultural encounters between individuals and health care systems may too easily be ascribed to differences in belief systems, with inadequate attention to social forces associated with ethnicity such as those arising from poverty or racism. As a case in point, a follow-up analysis of support study population demonstrated that African Americans (among other nonwhite groups) were more likely than Caucasians to die in acute care hospitals (odds ratio 1.88) (14). Other studies have suggested that as a group, African Americans are more likely to desire aggressive, life-prolonging care, and less likely to complete written advance directives (15). Whereas all this may be true, it would be a mistake to assume a connection between the probability of dying in the hospital and ascribed cultural beliefs of African Americans. Other demographic variables correlated with African American ethnicity, such as higher population densities in urban areas, proximity to hospitals, or socioeconomic factors such as poverty, might play as great or a greater role than beliefs. As a practical matter it is far easier to classify people by ethnicity than to sort out the influences of related and overlapping factors such as these.

Still, ethnicity is a useful starting point for considering the forces that affect care, as long as one understands that considerably more than “beliefs and practices” are at work. Correlated with ethnicity are important factors such as immigrant status, educational background, socioeconomic status, geographic and demographic distribution relative to health care resources, communication styles, and other social roles (4, 16). Space does not allow for a detailed discussion of all these factors, although they undeniably affect clinician interactions with patients and families in profound ways. If seeking to learn more about a particular ethnic group, the clinician will likely be disappointed by a traditional Medline search. Although some good books are available, few journal articles are specific to cultural aspects of particular ethnic groups. In contrast, the Internet is a particularly rich source for material with a number of Web sites specializing in this area. A selected list of Internet references is listed in Table 47.2.

Cultural sensitivity requires an awareness of and respect for differences. This is far easier said than done. As one anthropologist put it, “culture hides much more than it reveals, and strangely enough what it hides, it hides most effectively from its own participants (17)”. This statement suggests that examination of one’s own culture, a form of cultural self-reflection, is a natural starting point for increasing cultural sensitivity. Such reflection is furthered by contrasting one’s understanding and assumptions with those of other cultural groups. Of particular importance is contrasting differing understandings of illness, medical systems, and styles of communication. To a degree such reflection can be stimulated by formal medical education. Unfortunately, medical curricula have rarely included cultural aspects of care, despite studies calling for such inclusion. A study in 1992 queried 126 medical schools regarding possible courses in “cultural sensitivity.” Of 98 respondents only 13 schools reported offering such courses and all but one were elective. Fifty-nine schools indicated that they had incorporated cultural sensitivity in other courses such as courses on medical ethics (18). A systematic review of the literature from 1963 to 1998 published in 1999 found 17 reports of curricula meeting search criteria (19). Thirteen
of these programs were in North America and 11 were exclusively for students in year 1 and 2 of medical school. The focus of most of the content was on ethnicity, attitudes, health beliefs, and language barriers. Only one program is reported to have considered anthropological and sociological theories (20). The lack of breadth and the apparent lack of depth of training suggested in this review are discouraging. However, there are some encouraging signs of change. Carrillo et al. published a description of a course for medical students and residents consisting of four 2-hour modules covering basic concepts, core cultural issues, understanding the meaning of the illness, determining the patient’s social context, and negotiating across cultures, which seems to be more in keeping with recent anthropologic and sociologic trends (21). In an intervention designed to assist internal medicine programs in the United States in improving palliative care education, Weissman found that teaching regarding cross-cultural issues was high on the list of unmet needs of residency training programs (22). In response to this, a module on addressing cross-cultural concerns was developed (23). This suggests that physicians are generally interested in improving their training in cultural issues, which bodes well for future educational efforts.

In keeping with the notion of cultural self-reflection, let us consider biomedicine as a culture, particularly as it has evolved in the United States and the relation between biomedicine and palliative care. Originating in western Europe, the evolution of biomedicine has been guided by complex historical, religious, philosophical, and economic forces (24). Biomedicine has now become, arguably, the dominant medical system throughout the world, being integrated, or at least coexisting, with numerous other medical systems. Insight into cultural aspects of biomedicine is critical for the practitioner trying to work with individuals across cultures.

Although sharing with other medical systems a fundamental charge to heal the sick, biomedicine’s emphasis in recent decades has been increasingly to fix broken bodies (24, 25). Pursuing a western rationalist belief that the good is best approached through scientific inquiry, biomedicine has developed a mechanistic approach to care. Through a progressively refined and reductionist understanding of the origins of illness, labeled disease, the hope (and the myth) of biomedicine is to eliminate physical disease entirely. Although suffering is not entirely ignored in biomedicine, it does take second place to biology as an issue of concern in that it is often presumed that suffering will disappear once disease has been eliminated. This belief that suffering is derivative to biological malfunctioning is naïve on two fronts. First, it simply takes no account of aspects of suffering not arising from the body (26, 27). Second, almost too obviously, biomedicine to date has failed to eliminate disease. Given our continuing mortality, inevitably the elimination of one illness must, by default, increase the probability of becoming ill and eventually dying from something else. Therefore, suffering continues. Indeed, biomedicine “creates” new forms of illness and associated suffering, as the field of supportive oncology, dealing in large part with the sequelae of oncologic treatment, is ample testimony. The evolution of palliative and supportive care, pain clinics, and hospices as social phenomena on the margin of biomedicine can be understood in part as reactions to the failure of this dominant myth of biomedicine (Table 47.3).

Biomedicine is unusual as a medical system in its inattention to any concept of a “life force” (28, 29). Most other medical systems include some notion of a life force and commonly frame the understanding of health and illness in terms of balance and imbalance between aspects of energy (often positive and negative) that give rise to a life force (13). Examples include Chinese (yin-yang) and Hispanic (hot-cold), among others. A medicine that identifies healing as a process of balancing seems philosophically closer to the spirit of palliative care than a medicine based on cure and is arguably more relevant when cure is no longer possible. Balance need not be approached solely in terms of energy. For example, palliative approaches to congestive heart failure and skin disorders often emphasize a balance between wetness and dryness.

Biomedical culture influences our behavior as clinicians at more intimate levels as well. Our cultural personae as clinicians are shaped to a large degree by innumerable small interactions with teachers and peers. For example, in learning to take a history, clinicians come to understand that the Social History should primarily focus on behavioral risk factors for disease, such as alcohol intake and sexual activity, not the social network of the patient. Nor is there even a section
for a Personal History of the patient as a person. Such a bias is a reflection of the biomedical emphasis on disease and relative neglect of more social aspects of illness. With chronic or terminal illness, preventive health care, emphasized in the traditional H&P, becomes less relevant and the social network upon which the patient increasingly relies becomes more relevant. Insensitive application of a biomedically oriented approach to care risks neglect of social and cultural aspects of the patient’s illness, which tend to grow in importance with progressive severity and chronicity of illness.