Principles & Practice of Palliative Care & Supportive Oncology
3rd Edition

Chapter 47
Cross-Cultural Issues
James L. Hallenbeck
People experience both health and illness in cultural contexts. A better understanding of culture helps the clinician avoid certain common pitfalls, thereby improving the chances of good outcomes. Very sick and dying patients in our society are often dependent upon care from people of very different cultural backgrounds, making cross-cultural misunderstandings and conflict common. Following an introductory discussion of culture and ethnicity and their relation to palliative care, this chapter will explore cultural issues in palliative care from a framework of three interrelated concepts—cultural sensitivity, competence, and effectiveness (1). Cultural sensitivity refers to an awareness of cultural influences on beliefs, practices, communication styles, and system issues as they affect the patient, the family, and the clinician. Cultural competence refers to skills and behaviors that serve to decrease cross-cultural conflict and improve care outcomes. Finally, the chapter will conclude with a discussion of the effectiveness of various interventions that might be used to improve care across cultures.
What is Culture?
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.
Importance of Culture to Palliative Care
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
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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.
Table 47.1 Cultural Aspects of Care
National Consensus Project Criteria
The cultural background, concerns, and needs of the patient and their family are elicited and documented
Cultural needs identified by team and family are addressed in the interdisciplinary team care plan
Communication with patient and family is respectful of their cultural preferences regarding disclosure, truth-telling and decision making
The program aims to respect and accommodate the range of language, dietary, and ritual practices of patients and their families
When possible, the team has access to and utilizes appropriate interpreter services
Recruitment and hiring practices strive to reflect the cultural diversity of the community
From Clinical Practice Guidelines for Quality Palliative Care, National Consensus Project, 2004.
“If we do not birth and die ritually, we will do so technologically, inscribing technocratic values in our very bones. Technology without ritual (or worse, technology as ritual) easily degenerates into knowledge without respect.” (8), p13).
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.
Ethnicity
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
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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.
Table 47.2 Internet References
Internet links for Cross-Cultural Issues in Health
The Center for Cross-Cultural Health. Links to multiple other cross-cultural web sites. http://www.crosshealth.com/links.htm
The Cross-Cultural Health Care Program. Specializes in issues related to medical interpreters and other cultural competency issues. http://www.xculture.org
Stanford Geriatric Education Center. Specializing in ethnogeriatrics. Includes on-line training modules on cross-cultural communication. http://www.sgec.stanford.edu/
Ethnomed: Ethnic Medicine Information from Harborview Medical Center. Contains health care information pertinent to health care of recent immigrants. http://www.ethnomed.org
CultureMed. From SUNY, this web site promotes culturally competent health care for immigrants and refugees. Superb bibliographies. http://www.sunyit.edu/library/html/culturedmed/
International Association for Hospice and Palliative Care. Leading international hospice and palliative care organization for a more global perspective. http://www.hospicecare.com/
Culture of Biomedicine and Palliative Care
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
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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.
Table 47.3 Tensions in the Culture of Biomedicine
Individualism ↔Reductionism
    Autonomy Paternalism
    Disease in the individual body Mechanistic/technologic approach to illness
    Consumerism Bureaucratization
Egalitarianism ↔Capitalism
    Health care as a right Health care as commodity
Lacking in modern biomedicine: Focus on suffering as primary object of medicine Inclusion of a concept of a life force in model Illness as something transcending the individual
Palliative care, working at the margin of biomedicine, constitutes a radical challenge to many of biomedicine’s tenets. The emphasis in palliative care is on the person and family as the unit of care. Attention to suffering and quality of life assumes primacy in care provision. It should come as little surprise that resistance to such an approach has been engendered by many in biomedicine. Resistance is less a conscious opposition to palliative goals of care (nobody is against relief of suffering) and more a reflection of a cross-cultural conflict between the traditional biomedical culture and the evolving subculture of palliative care.
Bioethics, Biomedicine, and Cross-Cultural Encounters in Palliative Care
The relevance of bioethical concerns to palliative care should be obvious. It is more difficult to appreciate that bioethics are the product of western biomedicine and as such are prone to cultural biases. The national consensus guidelines list three topics more commonly discussed as bioethical issues as “cultural preferences”: disclosure, truth telling, and decision making. Other topics such as hydration and nutrition could be added to this list. Such topics do indeed raise ethical concerns. However, to address the ethics of such concerns as being separate from the diverse belief and value systems shaping “cultural preferences” is to risk cultural insensitivity. Therefore, the practice of bioethics must be informed by a consideration of intrinsic cultural biases as the first step in the development of a culturally sensitive bioethics.
Anthropologic critiques of bioethics are limited, but raise important issues of concern (30). Often noted as “ethnocentric” positions of bioethics are the following:
  • The dominance of abstract ethical “principles” as prime movers for decision making, based on tenets of western philosophy.
Classically four such principles are identified—autonomy, beneficence, nonmaleficence, and justice. The process of using abstract principles as prime movers betrays a cultural bias. So too does the choice of specific principles. For example, interdependence, valued by so many non-western cultures as a principle for decision making, might be posited as the counterweight to autonomy, rather than justice (31, 32).
  • A tendency to make such abstractions “practical” through the practice of consultations on ethics, especially in the United Sates.
  • Codification of such abstractions in a plethora of laws, regulations, and policies, reflecting the bureaucratic and litigious tendencies of American society.
  • The dominance of autonomy as a guiding principle (33, 34).
  • Suffering as a derivative, not a primary concern of ethics.
An almost unassailable insistence on surrogate decision making as the only proper vehicle for deciding a course of action for patients lacking capacity derives from the dominance of autonomy as a principle of bioethics. The anthropologic basis for the primacy of surrogate decision making and substituted judgment, in which the proxy is supposed to decide as if he or she were the patient is highly questionable (35). Even a cursory examination of decision making for incapacitated patients across world cultures would find very few examples of groups espousing surrogate decision making as a guiding value. One could argue that the primacy given to surrogate decision making reflects the limited view of a very small subculture of western bioethicists (and the courts and many policy makers who seem to share this view) (6).
Cultural Competence
The prior section on cultural sensitivity stressed the importance of an appreciation and respect for differences among cultural groups. Such awareness is an important step in moving toward cultural competence and effectiveness, but is inadequate in and of itself. Cultural competence requires the acquisition of new skills and behaviors to address differences identified through greater sensitivity and awareness. The term cultural competence, which has become broadly accepted in the literature, is somewhat unfortunate in that it implies that clinicians are either competent or incompetent in their practices, when in fact cultural competence should be understood as existing along a broad spectrum of abilities; one does not become culturally competent, the best one can do is to improve one’s competency. In this section the issue of nondisclosure will be discussed as an example of a skill used to address a bioethical issue in a culturally sensitive manner and then the broader issue of cross-cultural communication will be addressed.
Example of Nondisclosure
The scene is well known to most clinicians. A relative requests that the clinician not inform a patient of some bad news such as a diagnosis of cancer or a terminal prognosis (36, 37). Such a request appears to conflict with autonomy as a guiding principle and multiple health care policies that stress the importance of informed consent. The dilemma is doubly difficult because the request is that clinicians either not talk to or blatantly lie to the patient, inhibiting open communication that might resolve the issue.
A narrowly applied bioethics could do serious harm in such a case. Rigidly insisting that the patient has “the right to know” could both alienate family members and damage the patient by forcing undesired information. Anecdotal case reports suggest that some patients, if bluntly told of their prognosis, will in fact lose the will to live, as families sometimes warn. Orona suggests a possible resolution to the problem based on a twist of logic, which recognizes that autonomy can be reframed as a choice not to act independently but to defer to others (33). The trick is how to identify such a choice on the part of the patient without giving undesired information. Skill must be used in exploring the understandings of the patient and the family and then negotiating a resolution.
At the simplest level the clinician should state and demonstrate respect in the face of such a request (23, 38). Recalling that family-based decision making and nondisclosure are common worldwide, and recognizing that courage is often needed to make such a request in the face of a powerful health care system that generally disapproves of nondisclosure, may help the clinician engender respect.
Exploration of the context may begin with the person(s) making the request for nondisclosure. Why are they making this request? How do they understand the roles of participants,
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both in the family and among clinicians, relative to care? What do they fear might happen if the person knew? What are their hopes?
Just as cultures are not monoliths, neither are families. It is quite possible for a family to believe the patient does not want to know, when in fact he or she does. The clinician might then inquire how the family and specifically the patient have dealt with similar situations in the past. The clinician might ask questions such as, “Do you think or know that she would agree with this? Have you discussed this approach with her? How has she dealt with similar situations in the past?”
Exploration is not a one-way street; it is not the same as taking a history. Clinicians are advised to share their (often equally foreign) biomedical viewpoints as well as the dilemmas being confronted, including policies that require informed consent. For example, beyond the mundane (getting consent forms signed), clinicians may admit that they too wish only the best for the patient. One might say that in one’s experience some people even in cultures that practice nondisclosure really want to know and that if this were so, nondisclosure might cause the patient distress and this would bother the clinician. The clinician might explain that he or she values truth telling and could not lie if asked a question directly. Hopefully, finding the presumed common ground of wishing the best for the patient will foster some mutual understanding.
The clinician will probably want to explore the patient’s understanding and concerns. The intent and desire to explore the patient’s wishes regarding disclosure without coercion may be explained to family members. At a simple level one may simply need to confirm that the patient wishes to “defer” decision making to the family, although a richer exploration is encouraged. What to do if the patient states that she wants to know the truth or to be in charge should be worked out before such an encounter. Most clinicians will want to be clear on certain ground rules such as not lying. If the patient requests to be informed, rather than simply be told, the clinician may change roles and facilitate improved communication between the patient and family.
Dealing with difficult dilemmas in real life cannot be done as prescriptively as the preceding text might imply. The preceding text is presented to offer the clinician some guidance as to how to explore and negotiate such a situation and to illustrate an approach to conflict resolution.
Intercultural Communication
As the prior discussion highlights, good communication is critical to the practice of medicine in general and palliative care in particular (39). Generic communication skills in palliative care, such as the ability to listen or give bad news, will not be discussed here. A number of recent texts explore intercultural communication in health care (40, 41). Cultural aspects of communication specific to palliative care are beginning to be addressed in the literature and will be discussed further here (38, 42).
The most obvious cultural communication barrier is language. Communication will be largely ineffective and prone to serious misunderstanding without competent translation. Relying on family members as translators, although sometimes unavoidable, is problematic, as messages between clinician and patient may be filtered (43). Using family members as translators also puts both patients and family members in awkward positions. They may be forced to discuss sensitive topics inappropriate for their family roles. Role conflict, in which new social roles conflict with established roles, may result. For example, in using a bilingual child as a translator, as is common, there may be a role reversal between the patient/parent and the child in which the parent becomes dependent upon the child. Professional medical translators, where available, are generally recommended although their use does not eliminate communication challenges (44). Skilled interpreters can do more than translate words. They may act as “cultural guides,” facilitating broader understanding (45).
In considering language as a cultural barrier, the tendency is to view the other’s language as the problem, something that needs only to be translated. More difficult is recognition of the barriers intrinsic to the language of biomedicine. The language of biomedicine emphasizes scientific, technologic, and cognitive concerns and tends to neglect more human concerns such as emotion. Patients and families often attempt to express their concerns through this biomedical language, trying to speak to us in our peculiar, foreign tongue. For example, distress in witnessing a family member near death may be expressed as a demand for some medical intervention such as intravenous hydration. In part, this may be because people have become familiar with the bias of biomedicine to focus on doing rather than feeling. In hearing such a demand, clinicians are prone to hear and respond to the technical aspects of the communication and ignore the affective subtext of distress (46). Therefore, the specialized language of biomedicine can pose particular communication challenges for those attempting to address more human concerns, as palliative care leaders have rightfully advocated is necessary. A specific communication skill of particular value in palliative care is to learn to recognize and address the subtext of a message both in terms of affect and underlying cultural values.
Cross-cultural communication in palliative care is particularly difficult because key content issues, such as serious illness, difficult decisions, and dying, are very sensitive for many people. Discussion of certain topics may frankly be taboo. In many cultures and for many people, words have power. To speak of illness or dying is to increase the chance of illness or death occurring. Carrese, discussing Navajo difficulties with western bioethics, quotes a Navajo medicine man:
In my practice, when I’m working with the patient, I am very careful of what I say, because any negative words could hurt the patient. So, with Western medicine, a doctor could be treating a patient, and he can mention death, and that is sharper than any needle (47).
Communication is far more than simple transmission of data from one source to another. Without some understanding of the context within which communication occurs, mutual understanding is impossible. A branch of anthropology has focused on intercultural communication, based largely upon the pioneering work of anthropologist Edward Hall (17). Hall recognized that cultural contexts are not inert boxes within which communication exists, but important aspects of communication itself. Hall and others have identified some cultures as being relatively high and others as relatively low in context (48). High-context cultures tend to depend more on the context of the situation than on verbal expression for communication. Context refers to things such as who is speaking to whom, the setting for the discussion, relationships between participants (including issues such as dominance, trust, or mistrust), the physical use of space and shared meanings. Nonverbal communication is closely linked to context. Context may be imbedded in verbal communication as well. The very different meanings in two expressions for dying, “kick the bucket” and “passing on,” derive from shared contextual meanings (49). High-context people tend to become offended by overly direct verbal communication and a lack of attention to relationship building by low-context individuals. In contrast, low-context cultures and individuals tend to stress direct verbal communication. Low-context people may become
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frustrated by vagueness and lack of direction in discussions with high-context individuals. Much of what is important to high-context people is frankly invisible to low-context people.
Biomedicine, arising from a western, predominantly northern European scientific tradition, is very low in context. Although such a low-context approach may serve well where efficiency is needed and accurate transmission of data is required across cultures and languages, it becomes problematic when dealing with the more human issues, which commonly arise in palliative care.
Just as cultures may be higher or lower in context, so too can different human activities. Very personal, taboo, or dangerous activities tend to be highly imbedded with context. Serious illness and dying are very personal and dangerous activities and therefore are intrinsically high in context. Major communication problems arise when clinicians practicing within the world of biomedicine use low-context communication strategies in dealing with patients and families experiencing illness as high-context events. Very direct, scientifically oriented communication, emphasizing reason over emotion, as typical of western biomedicine, can easily clash with more indirect, contextual styles typical of many cultural groups. Low-context clinicians in dealing with high-context encounters, may benefit from first identifying encounters as such. Hints to a high-context encounter include much indirectness in the conversation and the involvement of multiple participants. Requests for nondisclosure, previously discussed, typically occur in high-context encounters. Although the low-context tendency is to “get down to business” and resolve an issue quickly, perhaps by too directly emphasizing the patient’s right to know, this approach often backfires when inadequate attention has been paid to relationship building, which is usually critical to the resolution of high-context problems. The low-context clinician may need to slow down and build new relationships before negotiating a specific course of action. Adjusting one’s speed of communication, using spatial positioning and surroundings to convey intended meanings, and building relationships, are examples of explicit high-context communication skills.
Explanatory Models and Illness Narratives
Serious and life-limiting illnesses pose threats to personhood (25, 50, 51). People tend to live optimistically, creating life stories that end with everyone living “happily ever after.” Serious illnesses are radical interruptions in these stories. Sick individuals and the others involved, struggle to make some sense of this negation, to fill in the blank by interpreting illnesses and eventually incorporating them into revised life stories. In revising their stories people tend to fall back on traditional patterns and understandings. These understandings of illness often differ significantly from biomedical understandings.
Kleinman introduced the term explanatory model as a means of exploring different understandings of illness (52, 53). “Explanatory models are the notions that patients, families, and practitioners have about a specific illness episode” (52), p121) (italics mine). As this quotation points out, clinicians also have their own explanatory models for illness, most typically revolving around the concept of disease. Kleinman has suggested that eliciting a patient’s explanatory model (and reciprocally reflecting and sharing one’s one model) can further mutual understanding and help form a basis for collaborative decision-making (52), p227–251). He writes that in the face of illness two questions seem to dominate—why did this happen and what should be done about it. Specific questions useful in eliciting an explanatory model are included in Table 47.4.
Table 47.4 Explanatory Model Questions
What—do you call the problem, do you think the illness does, do you think the natural course of the illness is, do you fear?
Why—do you think this illness or problem has occurred?
How—do you think the sickness should be treated, do you want us to help you?
Who—should you turn to for help and who should be involved in decision-making? What are their roles in your illness?
Such an exploration should consist of “empathic listening, translation, and interpretation” (52), p228). In more recent writings Kleinman explicitly warned against using the explanatory model as a form of interrogation:
“I meant the explanatory models technique to be a device that would privilege meanings, especially the voices of patients and families, and that would design respect for difference. I intended it to be a modus operandi to get at what is at stake in suffering. I saw explanatory models as a methodology for clinical self-reflexivity, for pressing against biomedical crystallizations, for laying hold of the sources of clinical miscommunication. I wanted to encourage the use of open-ended questions, negotiation, and listening, not the usual mode of clinical interrogation” (28), pp8–9).
The preceding passage suggests that Kleinman understood the explanatory model technique as a means to enhance both cultural sensitivity and competence in clinical encounters.
Exploring explanatory models is critical for effective communication. This is a process not only of listening to the patient, but of sharing and interpreting the clinician’s explanatory model of the patient’s illness. Such exploration serves as a basis for collaboration and negotiation as to goals and choices. More concretely, exploration itself is often therapeutic.
Example of the Use of the Explanatory Model in Palliative Care
Consider the following common dilemma: a patient with cancer does not want to take an opioid you believe would be helpful in managing the patient’s pain. Although it might be tempting to simply explain common misperceptions regarding opioid management, exploration of explanatory models might be more productive in the long run, as outlined in Table 47.5.
As this hypothetical example shows, there are areas of overlap and difference in the two models. In the process of exploring the model the clinician comes to understand that far more is involved than clearing up misunderstandings of addiction. The patient is struggling with whether or not the pain can or should be relieved. Statements made reflect spiritual and psychologic distress, which might best be addressed by others.
Kleinman points out that explanatory models are not complete accounts of illness in and of themselves. They are part of broader illness narratives, which in turn are actively created out of rich life experiences in response to a disruption in life stories—a process of integration in the face of the disintegrating forces of illness (50, 51). This process of healing
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work in the face of certain unalterable realities of illness seems to get to the heart of what palliative care is all about.
Table 47.5 Patient and Physician Explanatory Models of Pain
Question Patient’s model Clinician’s model
Why do you think you are in pain? The cancer (superficial level) The cancer (superficial level)
  I deserve to suffer for mistakes I have made in the past (deeper level) A combination of nociceptive and neuropathic pain, due to nerve compression (deeper, biomedical level)
What do you think the natural course of your illness and pain will be? There isn’t much that can be done about it. The pain and my illness will worsen until I die. The situation is hopeless While this is a terminal illness, this particular pain syndrome seems eminently treatable. The patient could feel much better
What do you think would happen if you took morphine? I would just get addicted, which would make matters worse The pain would improve. The patient would not become addicted, although certain side effects such as constipation would need to be managed
Who should be involved in dealing with your pain? It is really up to God. Perhaps this is also a test for me to see how I handle all this. I wonder if I’m up to it Whereas there is a physical cause for the pain, it is also clear that the patient is struggling with other issues. Perhaps others on our team could be of help
Cultural Effectiveness
An American Academy of Pediatrics position paper stated, “[W]hereas cultural competence and cultural sensitivity refer to the provider’s attributes, the term culturally effective health care refers to the interaction between the provider and patient” (54). This statement, although reasonably pointing beyond individual provider characteristics, is unsatisfying as a definition for cultural effectiveness. Here, cultural effectiveness will refer to outcomes resulting from provider or health care system interventions in response to efforts reflecting cultural sensitivity and competence. The question, quite simply, is what interventions result in effective change for the better?
One systematic review of 34 educational initiatives found that most studies of courses on cultural sensitivity and competence demonstrated measurable changes in attitudes and skills over short to intermediate time ranges (55). However, this review found only three studies demonstrating improved patient satisfaction and no articles addressing patient health outcomes such as access to or provision of care. None of the reviewed studies was specific to palliative care. Obviously, more research is needed.
Interventions that might be effective could work at either interpersonal or system levels. As the referenced review demonstrates, courses addressing knowledge, attitudes, and skills, can clearly affect the clinician. Despite a lack of studies, it seems highly probable that such courses also improve patient and family satisfaction, to the extent they result in more sensitive and effective communication. Where particular tensions exist between clinicians and particular patient populations, as where most providers are from a different ethnic or religious group than are most patients, targeted educational interventions addressing such tensions would seem particularly important.
Table 47.6 Special At-Risk or Underserved Populations
Immigrants and refugees
The homeless and the impoverished
People with histories of substance abuse
People with chronic mental illness
People with developmental and other disabilities
People with sexual identity issues
The incarcerated
The bigger challenge seems to be to identify interventions that would likely improve access to care and clinical outcomes for underserved groups. This is a major challenge for palliative, supportive, and hospice care programs, as a number of studies have demonstrated underutilization and barriers to care for minority groups and special populations (4, 56, 57, 58, 59, 60). A partial list of at-risk populations that would likely benefit from special attention is presented in Table 47.6. It is not hard to imagine that these groups, among others, might have very special palliative needs that currently are poorly addressed within existing systems of care. Hospice and palliative care organizations are rightly concerned that the care they provide too often is for those in privileged classes.
Whereas a variety of macroscopic social forces, related to patient demographics and health care system factors, undoubtedly serve as barriers to good palliative and supportive care these should not prohibit system changes at a local level. Table 47.7 provides a partial list of interventions that local programs might consider. Of note, formal training becomes a system change, when it is required and monitored. A community needs assessment might start with a review of patients historically served by the program and then a study of cultural groups in the program’s catchment area to identify underserved populations. Outreach to and collaborative problem solving with leaders of underserved populations might then improve access and hopefully outcomes for patients.
Summary
Culture is all around us and yet for the most part, we are blind to it. We may recognize culture in others, very different from ourselves; it is far more difficult to be aware of how our own culture invisibly influences our own thoughts, actions, and organizations. It is the very ubiquitous nature of culture that makes it so difficult to move from good intentions to action.
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The temptation is to rest on our intentions or to narrowly circumscribe “cultural competence” with isolated educational courses. As has been demonstrated admirably elsewhere in the palliative care movement, the most effective changes are likely to result from systemic changes that institute new patterns of care.
Table 47.7 Suggestions for Programmatic Changes to Improve Cultural Effectiveness
Inclusion of cultural sensitivity and competency training as a staff requirement
Staff recruitment, reflecting community diversity
Community needs assessment
Identify and make accessible resources useful in meeting the needs of target populations including:
Internet resources
    Local community agencies and support groups
    Library of relevant books, journals, educational material
    Establishment of policies and procedures addressing translation needs
    Inclusion of a cultural assessment as part of routine patient and family assessment
Outreach efforts to disadvantaged groups with palliative care needs:
    Partnerships and educational efforts with community organizations
    Brochures and educational material linguistically and culturally appropriate for target populations
Acknowledgment
Work is supported by the Department of Veterans Affairs, VA Palo Alto Health Care System.
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