The Disease—Illness Dichotomy

Health care is a complex issue. Cultural and language barriers complicate the situation. Western medicine has developed into a subculture with its own history, language, codes of conduct, expectations, methods, technologies, and concerns about the science which supports it. Science teaches us that human populations are governed by biologic universals that transcend cultural boundaries. The methods and language of biologically based and somatically focused health care have created an extraordinary gulf between practitioners and the public they serve.

There is a disparity between the biomedical categorization of human disruptions as disease and the patient's personal and social experience of illness. The dichotomy between disease and the illness experience has provoked extensive commentary. It has been proposed that the inability to deal with illness is a major failing of biomedicine. Cross-cultural circumstances often magnify the discrepancy between the views held by patients and health care providers. The inability to recognize and deal with perspectives of illness that deviate from those of the biomedically trained practitioner can paralyze attempts at identifying problems and developing plans for solving them.

Biomedicine must use approaches that recognize and account for the views and values of the individual and of cultures, not only in determining the nature of a patient's problems but also in describing solutions. To undertake this task, the practitioner must be prepared to accommodate to the dictates of biology as well as the experience of illness as it is perceived by the patient, his family, and his group.

Issues of Provider Dominance in Communicating with Patients

Provider–patient communication involves socialization, diagnostic inquiry, planning, negotiation, goal setting, therapy, and education. As a verbal interchange progresses, each communicant has an evolving sense of his or her contribution to the information being shared, its basic meaning and content. Cultural boundaries are a major source of discrepant views of reality. In patient care, factors that distort the development of commonly shared information will necessarily alter the perceptions of clinical reality.

Clinical realities are formulated in a setting heavily influenced by a provider-dominant relationship with recipients of health care. Consider that (1) the provider has been asked to help, diagnose, counsel, treat, and often to certify the patient as "sick" in a socially approved fashion; (2) the provider organizes the discussion, directing it in a fashion that will be optimally relevant to the patient's complaints and situation; (3) the provider molds patient responses and findings into recognizable, manageable patterns (this allows for problem description via paradigms about illness that have been developed and accepted within the context of biomedical practice); (4) the provider determines which portions of the material will be regarded as significant, and this decision is often made unilaterally, independent of the patient's views; and (5) the provider then describes both the diagnostic and therapeutic actions to be taken.

Provider dominance may introduce an extraordinary bias, which can lead to a unilateral and ethnocentric view of "what's wrong." Provider views may be further biased by his or her personal background, values, and social class. In addition, formal training, instruction and certification in medical methodology creates a sense of correctness, authority, and superiority in which "the doctor knows best." These circumstances can lead to a situation in which patient views are overlooked or excluded as invalid concerns.

Faced with the potential for discrepant views of what constitutes illness in cross-cultural interchanges, the provider must first recognize what it means for him or her to be in a dominant role. Provider dominance can serve to impede rather than improve communications. Failure to recognize this issue can block the practitioner's ability to consider the patient's views and role in the illness process.

Accommodating to a Broader Universe of Patient Needs and Views

Symptoms and disruptive life events are often a stimulus for problem-solving activities. Patients often use more than one system for problem solution. For example, it is not unusual to discover that a "modern" Westerner has called upon biomedicine, religion, and a popular therapy like chiropractic to solve a problem. This circumstance can be diagrammed as follows:

In patient care settings, biomedical and popular systems of care must be viewed as parallel, often simultaneous activities. It is often necessary to reach an accommodation between them. The patient's views must be taken into account and dealt with. It is clear that popular or folk therapies often work, although at other times they may have a negative effect. When patients have special knowledge or views (e.g., a cultural construct of cause and necessary therapy), a language or communication problem, or family–community problems, these issues may need to be elevated to a level of concern on a par with a problem such as congestive heart failure.

Cross-cultural accommodation in the care process allows biomedical, psychosocial, and popular definitions to coexist within the framework of both cultural systems. It requires that patient and provider consider plans and therapy directed at problems arising from both points of view. Failure to establish this accommodation may lead to failure in the health care process.

Ethnocentricity in Differing Diagnostic and Therapeutic Traditions

Diagnostic and therapeutic processes in different cultures have evolved from both ancient and borrowed traditions. Each healing tradition, including biomedicine, is inherently ethnocentric. In cross-cultural settings, it is necessary for both patients and providers to accommodate to the circumstances of an illness described in the context of more than one system. In general, these systems involve the discovery and evolution of an illness, a description of what is wrong, the actions taken, and attempts at resolution.

Patients may connect life process and symptomatology in a way that does not fit with biologic definitions.² In addition, special knowledge and popular health beliefs may play a prominent role in patient concerns. Individual experience with traditional practices and beliefs as well as the ability to articulate them may vary. Many cultures discourage the revelation and exposure of personal and family issues. Unfortunately, biomedical focus often precludes these revelations, and they remain unrevealed and unspoken.

Each step of the problem-solving process is ethnocentric. In cross-cultural care, patient–provider interactions are complicated by the existence of parallel, usually discrepant, explanatory systems that may include disparate descriptions of natural phenomena. When an event occurs, entirely discrepant problem-solving methods and views may be called upon to describe and explain "What's wrong?" "Why?" "What should we do about it?" Hidden behind explanatory systems we find variations in communication and language use, different expectations regarding interpersonal interactions and interpersonal responsibilities, as well as different approaches to problem solving. The very complexity of cross-cultural circumstances magnifies the serious problem biomedicine currently has in dealing with nonbiomedical issues.

The Application of Problem Orientation in Cross-Cultural Care

The problem-oriented method, described by Weed (1969), shifted medicine away from narrow biomedical focus and conclusions. It was his view that:

… doctors prefer to see only physical problems on a problem list; they"re neater. A patient may resent a doctor's suggestion that problems can be blamed on his or her spirit, attitude, mind, home or job; and some doctors don"t like patients who want to discuss their spirit, mind, home or job. … Most of medicine should be understanding and grappling with interactions between social and mental and physical problems. (Weed, 1978, p 19)

This approach facilitated a methodologic shift. Weed encouraged practitioners to state problems in language that best described the patient's circumstance. This prompted the use of a broader descriptive process. Biomedical and mental health diagnostic endpoints became part of an expanded universe of descriptions of patient's problems.

If the problem-oriented methodology is used appropriately, one has to account for the patient's view and devise a care plan that accounts for the complex interactions between medical, social, psychiatric, and demographic³ issues. Weed developed a basic description of problem solving around illness episodes (Fig. 229.1). This four-step model can be applied to problem solving in general, and may be used to compare the work of health care providers and healers universally. A formal outline of problem-oriented problem solving is described in Figure 229.2.

Figure 229.1

Problem solving around illness episodes.

Figure 229.2

The problem-oriented method in biomedical practice.

We will examine each aspect of medical interactions—data gathering, problem description, plans for care, and followup activities—from the perspective of cross-cultural circumstances. The purpose of this process is (1) to point out the differences in expectations regarding varying modes of health care and "healing"⁴ interventions; (2) to suggest steps that allow for and encourage cross-cultural exchange that incorporates and accounts for both the provider's and the patient's view of "what's wrong"; and (3) to describe an adaptation of biomedical methodology that allows for a broader study of illness process from both intracultural and intercultural perspectives.

Data Gathering

The patient's sense of what's wrong is based on prior life experience, the course of recent events, and the lessons taught by cultural process. Fears, as well as hopes and expectations, are based on this prior experience.

There may be a basic disparity in expectations regarding how a problem is uncovered or solved. Consider the dichotomy between biomedical and traditional Native American diagnostic techniques:

Diagnostic practices worldwide are based on a broad spectrum of folk beliefs and historical traditions, and often on magical or religious practices. Whether the parallel diagnostic technique is pulse reading by a traditional Chinese doctor, the Nooksak sg^w∂dílič instrument, or a Hmong shaman's trance, the message is similar.⁵ The expectations generated by these practices may lead to puzzlement with biomedical diagnostic practices and/or the attribution of magical qualities to both diagnostic and therapeutic procedures. Extensive questioning at the onset and during the course of an illness may puzzle those whose culture does not prepare them for biomedical methods of problem solving.

Alternative Inquiry Techniques

Since the expectations set by traditions vary, the question arises: how does a non-Western traditional patient react to biomedical diagnostic techniques and settings? As the personal experiences and background of provider and patient are increasingly disparate, each participant has diminished ability to relate to the other's perception of the illness experience. As a result, it is useful for the provider to shift the interview focus as follows.

Broaden Inquiries About the Family History

The family history is a traditional part of medical inquiry and is crucial in cross-cultural settings. It is a major source of information and simultaneously allows the provider to show interest and become familiar with a patient's background. An expanded family history often reveals information and concerns that are not offered spontaneously. Many traditional cultures are tied to an extended family process in ways that surprise Westerners. For this reason, the inquiry needs to go beyond the "did anyone ever have … ?" stage.

It is useful to discuss the whereabouts and current activities of family members. Look for similar symptoms or illness in the family, and establish the dates and possible causes of these events. For example, in Native American and refugee families it is quite common to discover multiple incidents of loss, injury, and illness. Look for problems and events within family and community that the patient ties to the illness experience. Explore life events, day-to-day activities, and interpersonal relationships. Irrespective of the character and source of the current illness episode, narratives regarding prior life experiences help uncover the focus of patient views and explanations.

Seek Alternative Explanations for the Illness

The explanations used by patients are dynamic and change over time. They represent an amalgamation of the patient's life experiences, knowledge, training, and experience with the illness as well as with therapeutic efforts and advice. Some patient explanations and beliefs are based on highly focused cultural constructs of illness. Kleinman et al. (1978) have used direct questioning to elicit these patient "explanatory models."⁶ Direct questioning is often revealing and prompts a clear description of how patients view their illnesses. These revelations are often key to problem solving, as illustrated by the case in Figure 229.3.

Figure 229.3

A patient's explanatory model for his illness.

At times, however, direct inquiry is unsatisfactory. Many groups and individuals will not discuss personal or ethnocentric views until the interview technique is altered. Furthermore, some individuals feel that the direct questions about what they think has caused their problem are a sign that the provider is uncertain ("If you don"t know what's caused my problem, I"m in the wrong place."). This issue was pointed out by Harwood (1981), who noted that some ethnic groups "expect the physician to be the ultimate experts on diagnosis and treatment."

The following techniques help to obtain information in circumstances in which the patient seems reluctant to provide explanations or historical data:

1. Use an indirect approach, externalize questions by referencing problems in others. Traditional patients who are unwilling to answer questions regarding feelings and fears directly often provide illustrations of their own concerns by discussing illness in others.
2. Acknowledge traditional beliefs, and illustrate them. Reference folk terms in conversation, or discuss what others have said in similar circumstances. For example:

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Patients who are}	as ill as you have been
	ill the way you are
	they can"t sleep
tell me}	they have had trouble with dreams (or reference an actual dream)
	friends say they were … (use a relevant folk term, eg, embruhado)

1. Change direct "questions" into narrative statements (as in the examples given in 2). Information exchanged in this fashion gives patients and families a broadened sense of the practitioner's focus, permits discussion of issues often left undisclosed, and avoids direct inquiry.
2. Inquire about special terminology that may apply to the problem ("What is this called in your own language?"). If the patient doesn"t know, ask what a grandmother or an elder would say about the difficulty. This indirect approach sidesteps the unwillingness of some traditional patients to discuss their problems openly and directly appeals to family knowledge and beliefs.
3. Inquire about dreams and difficulties with sleep. Discussion of sleep and dreaming patterns often leads to the revelation of key information regarding the illness's impact and the nature of the patient's concerns. Dreams have increased significance in settings where magical–religious beliefs have played a role in healing and problem solving. They are often critical markers in the assessment of mental status.

Take Language and Communication Style into Account

If a patient's personal vocabulary does not include terms like depression, allergy, cholecystitis, or even gallbladder disease, these words should be avoided. Response times in speech patterns vary. Native Americans often report that "Anglos go too fast," and do not take sufficient time in conversation. Some individuals are perplexed by a provider's insistence on reporting certain details while seeming to ignore others (which may be important to the patient).

Building trust is a major issue. Individuals from small groups or rural backgrounds are accustomed to dealing through family and kinship networks. Help is sought through personal contacts and generally comes from individuals known to the family or community. Health care institutions often represent loss of personal choice in the sense that the patient does not "know" the providers, and vice versa. Breaking this barrier is an essential component of provider–patient interactions and often involves breaking the pattern of neutrality, distance, and noninvolvement that physicians are encouraged to use.

Problem Description

Dealing with Parallel Explanations of Illness

Dealing with discrepancies in problem description is a necessity. One can begin by describing problems in parallel with each other. This is illustrated by the case in Figure 229.4 in which two ethnocentric views of "what's wrong" are recognized and accounted for. The case illustrates a situation in which a biomedical disease has a parallel and totally discrepant explanation within an alternative ethnomedical system. Having determined that discrepant views exist in a clinical setting, problems must be dealt with in context with one another. One is faced with a dilemma: In what ways are both descriptions valid? How can a biomedically trained practitioner deal with constructs about illness and disease that fall outside of the realm of biomedical "culture"? A number of points are raised by this example:

Figure 229.4

Discrepant explanations by patient and physician of a patient's problem, its cause, and appropriate therapy.

1. Although a biomedical problem may have a parallel, discrepant description in a traditional or popular system, traditional diagnoses and therapies often do not match biomedical diagnoses on a one-to-one basis. The tendency of biomedically trained practitioners to look for biologic equivalents in folk theories is confounded by the fact that folk definitions do not match biologic definitions.
2. Popular systems may describe problems that are culture specific. Remember, biomedical problems are not only culture specific when viewed from an outsider's perspective, but biomedical practice itself is culture specific and loaded with the values of Western society.
3. Many traditional systems do not separate religion and healing. This results in etiologic conclusions that have interpersonal, spiritual, and moral overtones and lack the relatively amoral quality of biologic etiologies. An example exists in Asian systems where religion and healing are based on ancestral process. In ancestral systems, illness, causation, and family members (living and dead) are intricately interwoven.
4. Family problems, dreams, and specific events may be viewed as etiologic.
5. Some constructs patients present about illness are descriptive and combine a variety of actions and social relationships with feelings and symptoms. These constructs are often viewed as significant by patients, but may be relatively acausal from a biologic perspective. In addition, they are often difficult to integrate as coherent explanations of "what's wrong," and should be dealt with as valid individual experience and concerns attached to illness and disease.

Many feel that acknowledgment of a nonbiomedical traditional view perpetuates the notions supporting "folk traditions." In the experience of the authors, alternative views are a clinical reality and may be acted upon concurrently irrespective of whether the practitioner recognizes, acknowledges, supports, or denounces them. In situations where practitioners deal with patients who hold traditional, nonbiomedical beliefs, it is necessary to evaluate the impact of these beliefs on the problem-solving process and, when appropriate, to encourage the concurrent use of these nonbiomedical traditions.

Plans for Care

In planning for care in cross-cultural settings, disparate views of risk and the perceived responsibilities of the individuals surrounding an ill friend or family member must be taken into account. Individuals surrounding an ill patient are all potential survivors of the illness and traditional, nonbiomedical systems often seem to meet essential needs of this group.

The problem-oriented method describes nine separate steps for establishing and carrying out patient care plans. These begin with goals, or "aims" for problem management.⁷ Special attention should be focused on setting goals for therapy, how a problem contributes to the patient's "sickness,"¹ the effects/disabilities produced by a given problem, and the use of education in the therapeutic process. All of these issues relate to the process of negotiation and accommodation that is necessary in cross-cultural care.

The basic goals and implications of therapy may be widely divergent. Consider the following dichotomy:

Biomedicine assumes that most disease is an individual issue. What's wrong, from a biomedical perspective, invokes a therapeutic response aimed at the individual. Only in circumstances that involve genetic or infectious disease, environmental problems, or threatening mental health behavior will biomedicine intervene on behalf of the group. This is an extraordinarily different perspective from that seen in traditional therapies, which are often aimed at the group as well as the individual. By involving multiple individuals in the therapeutic process, traditional therapies often neutralize perceived threats to the group posed by an individual's illness.

For example, in Thai treatment of soul loss, community and family actively participate in therapy by praying for restitution of the patient. Strings representing the lost soul are attached to the patient's arm, symbolically attaching a blessing and reattaching the soul. Similarly, Nooksak spirit dancers may burn gifts for ancestors either to ward off trouble or to treat an illness in a family or community member. "Burning" is carried out in a group setting in which dancers and members of the family and community participate. There is a common Nooksak perception that the group as well as the individual are treated, cleansed, and protected by this process. There is a remarkable parallel between the Nooksak system and similar attempts to placate the dead via ancestral meals and gifts in Asia. When healing is tied to an ancestral religious process, an individual's illness (or disease) is woven into the family fabric in ways that make the Western focus on the individual extraordinarily difficult for some patients and families to understand.

Negotiation over Illness and Disease

It is important to negotiate a balance between the management of biomedical problems and traditional illnesses. Margolin (1975) presented a 58-year-old Spanish American man whose complaints of nocturnal episodes of nausea, vomitting, abdominal pain, and inability to sleep led to extended emergency room and clinic visits. He had a remarkably complicated health history (Figure 229.5). The patient believed that his illness was the result of being embruhado ("bewitched"), and his explanation was based on folk beliefs that date to the fifteenth century and the system of curanderismo. His illness had begun after a dispute with an older neighbor, a woman felt to be a bruha ("witch"). Some members of his family concurred with his beliefs.

Figure 229.5

Medical history of a patient seeking repeated treatment. The patient was a 58-year-old Spanish-American man who made numerous visits to the emergency room during the fall of 1974.

The negotiation regarding therapy involved a number of issues. First, the patient was offered a referral to a curandero ("folk healer"). He declined, acting on the advice of family members and being aware that Margolin had successfully treated one of his relatives for a similar illness. Second, it was essential to separate his active biomedical problems (diabetes and coronary disease) and his culture-bound explanation of his problems with sleep, pain, nausea, and vomiting. It was agreed that the therapy was aimed solely at the brujeria ("witchcraft") problem and that he would continue to use his insulin and cardiac medications on a regular basis. The patient was treated with a combination of hypnosis and suggestion, and was instructed in the use of a prayer directed to St. Cipriano (a saint occasionally used by folk healers). He responded immediately. Over a 4-year follow-up period he continued to use his prayer and had not had a recurrence. It was felt likely that he would use the same system to explain serious disruptions in his life or health in the future.

The goals for management in this case involved careful attention to the patient's medical problems and incorporation of his beliefs into a therapeutic plan. A number of issues are raised by this case.

1. Patients with complex medical problems may use traditional explanations to deal with them.
2. Traditional explanations of illness may remain hidden from the view of practitioners, even after extensive evaluations of illness episodes.
3. The inability of biomedically trained practitioners to resolve an illness may support the family's belief that the patient is "sick in some other way." In this way, biomedicine is often used as a testing ground for folk diagnoses.
4. There is often an option to treat the patient in either or both systems, and judgments must be made about needs. (Margolin's patient was using excessive Excedrin to cope with his nocturnal symptoms. The Excedrin may have contributed to his nausea, vomiting, and abdominal pain. The physicians involved in the therapeutic decisions thought that stopping the drug might help resolve his gastrointestinal symptoms, but would not deal with the considerable fear and anxiety provoked by his beliefs.)
5. Explanation and negotiation between systems is essential. In this instance, the fundamentalist view of "healing" after treatment, which included the use of a prayer, might have led the patient to discontinue essential medications on a trial basis.
6. Referrals for issues related to traditional beliefs are often made through an extended family network.
7. At times, therapy for culture-bound syndromes can be provided on a cross-cultural basis.

Follow-up

Assessments of process and measurements of outcome vary across cultures. What is deemed a cure in one system may be viewed as a failure by another. The means of assessing success or failure may seem mutually exotic or bizarre.

Viewed from a biomedical perspective, traditional systems often seem to lack models for chronic disorders. A Sioux medicine man commented that his therapy works because none of his patients had to come back. A physician commented that his therapy works because his patients always come back. What's going on here? These boasts of therapeutic efficacy reflect disparate expectations about illness and therapy. The physician sees the patient's return as evidence of success in the face of ongoing process. The medicine man's cure often appears to leave no need for further therapy. It should be clear that their methods are entirely discrepant, and are based on different expectations. The circumstance is further complicated by patient wishes and expectations that therapy will provide a permanent relief or cure. Patients often reject and struggle with chronic illness and do so in a manner that challenges healers in any tradition.

Conclusion

Problem orientation offers a means of adapting clinical methods in biomedical practice to cross-cultural care and study. Each step of the problem-solving process has parallel activities in traditional and family systems of care. At each step, discrepant expectations, practices, family function, and communication style highlight areas of potential concern in clinical problem-solving. Problem-solving across cultural boundaries often involves seeking help from members of the community, from the sociologic, anthropologic, and ethnographic literature, and from anthropologists. In addition, patients become an invaluable source of information and, when sick, often reveal issues that might otherwise never be disclosed.

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Personal Vocabularies and Special Terminology

Biomedical training develops special knowledge about methodology and meaning. At the same time, it alters and narrows focus. Even when the same language is being used, special terms often require explanation.

Individuals often have personal vocabularies that do not include the terminology used by health care providers. Personal vocabularies can vary based on language skills, ethnicity, intelligence, education, and socialization. Prior life experience may lead an individual to attach special meanings to a specific term or circumstance. "Terms such as "diabetes," "rheumatoid arthritis," or "multiple sclerosis" may seem deceptively simple. Careful analysis will disclose that they represent a complex set of physiologic, chemical and structural facts" (Fabrega, 1975). Terms that seem common to providers are often perceived and understood in a fashion that does not match the originally intended meaning.

Each biomedical term has a complex meaning, a meaning that continues to evolve from its historic origins or that may be replaced as biomedical research refines our perception and understanding. When health care personnel discuss illness with patients, they use biomedical terms. At the same time, they often fail to use explanation and justification as part of their therapeutic armamentarium. As a result, patients often remain uninformed about the meaning (either the biomedical view or the practitioner's) of what is wrong.

Medicine, like any other subculture, not only has a complex lexicon, but also has its own jargon and folk speech. Institutional processes and places are often reduced to initials—ER, ADL's, ASAP, PRN—or brief terms such as chemotherapy or work-up. Some terminology deals with the stresses of health care settings. Dying patients are said to be going down the tubes, and irritating patients may be described as dumps, gomers, or crocks. These latter descriptions of patients by health care personnel represent a "rich albeit esoteric folklore" that "flourishes providing a much needed outlet for doctors and nurses who are under almost continual round-the-clock pressure" (George and Dundes, 1978). It should be noted that the folklore and its attendant language is no less esoteric than the language of biomedicine itself.

Folk Terminology

People's health beliefs and activities interact with secular or sacred healing traditions to produce a rich terminology about human disruptions.

Communication problems in medicine are a two-way street. For example, a Chinese American patient referring to cold or hot features of an illness may have special notions about the meaning of the message. Alternatively, the message of hot or cold may be hidden in a comment or question about a food that is thought to play a role in illness. Hot and cold theories about illness are widespread, vary from group to group, and may change with time and across geographic boundaries.

The interaction between folk notions and biomedicine is demonstrated by the term hypertension. Hypertensive patients may view their illness as related to being hyper and/or tense, and to stress. All three terms are related in American idiom. The juxtaposition of common idioms and a common diagnostic term have thus provided a folk definition of etiology. Another term for hypertension, high blood pressure, often leads in concerns over life's pressures and their relationship to the diagnosis. "High blood pressure" becomes, "I"m under too much pressure."

At first glance, high blood pressure appears to have been foreshortened by both urban and rural blacks to the term high blood. The term actually reflects a notion that certain foods can cause the blood to rise up in the body, or cause the blood volume to "go up." The close parallel between the biomedical term and the folk term results in an interesting interaction between biomedicine and a subculture. When patients use the term, they may be referencing either notion—that they have "too much blood" or that they have high blood pressure. However, they may simultaneously reference a special idea about etiology and treatment, for example, that certain foods such as "lemon juice, vinegar, pickles, olives cut the blood and bring it down" (Snow, 1976). The terminology can cause confusion. For example, problems may arise:

… when the individual is advised that his or her blood count is low and the blood pressure is high: since in folk nosology, high blood and low blood are obviously mutually exclusive the physician making this diagnosis will be thought a fool and the patient may not return for treatment. (Snow, 1976).

The rich and special terminology used within the black community offers an interesting example of folk terminology in a subculture (Table 229.1).

Table 229.1

Influence of Traditional or Folk Terminology and Beliefs on the Understanding of Physical Problems: American Black Terms for Some Medical Conditions.

Providers who are familiar with folk terminology may inappropriately assume that they are attaching the meanings that patients intend. Thus a patient's statement that "I fell out," like the statement "I"ve taken cold," has a meaning that requires exploration. To take cold alludes to a commonly held belief that cold is causative of health problems. It references a widespread etiologic notion that may be used to explain any number of illnesses. Like the report of a prior episode of "double pneumonia" or prior "nervous breakdown," these terms may stand for a variety of human experiences.

Beware! Patients and practitioners alike attach special meanings to their language, meanings that are often unspoken. To attach simple or brief translations to these terms is only a start. Full elucidation of meaning often requires a broad-based explanation of the patient's intent, beliefs, or circumstance. Folk terminology is special in regard to both origin and usage. Usage varies with the circumstance, and some usage is idiosyncratic. Elucidation allows the practitioner to understand an "individual in his own idiom before attempting to treat his complaints" (Kimball, 1971).

Complex Terms and Special Usage

Specialization fosters a complex lexicon. Biomedicine and traditional health systems are specialized, each in its own right.

Terminology and purposes may seem hard to understand across cultural barriers. As the gulf across cultures increases, terms may appear more exotic. In part, this is an artifact created by lack of familiarity. New terms in one's own language generally appear in a context of readily available associations, whereas first exposure to a term in another language lacks the easy attachments of familiar language. Terms are always somewhat out of context across language barriers.

In addition, cultural theories regarding illness produce a complex set of behaviors and an entire supporting lexicon. These constructs about illness produce special terms and meanings that are often hard to understand without a broad defining process. For example, the Hmong, a refugee hill tribe from Southeast Asia, have a rich terminology that appears to tie the "liver" to psychosocial disruptions (Table 229.2).

Table 229.2

Illustration of Cultural Differences in the Understanding of Physical Problems: Hmong Terminology for Liver Problems and What They Signify ^a.

These Hmong terms imply a special set of definitions for human disruptions. Like folk terms in any language (e.g., susto or embruhado for Mexican-Americans), they reflect a portion of an entire historic tradition. Hmong terminology richly illustrates the problem for patients and providers in cross-cultural medicine. How does someone from a Hmong background relate to a Western health care provider's reference to liver trouble of any sort? How does a Westerner deal with Hmong views of psychosocial disruptions? What special meanings do the terms imply? How does an interpreter handle the situation? This circumstance is illustrated by a parallel problem in Vietnamese, where the word hepatitis:

… is very often loosely translated into "liver disease." There is a widely accepted notion that "liver disease causes itching." A reported history of hepatitis may mean that the patient has had a symptom of "itching" which may, in fact, be secondary to a superficial dermatitis. (Hoang and Erickson, 1985)

Western-trained providers need to be made aware of these differences in language and explanatory systems and must learn to deal with the difficulties they present.

Complexity of meaning varies with usage. For example, the Lakota (a Sioux dialect) term i′yumiη, which translates "distorted/twisted face," appears on the surface to describe individuals with a stroke or Bell's palsy. Its use as a phrase of warning in Lakota idiom broadens its meaning: "Don"t do that, you"ll get i′yumiη." However, its use in special situations like death and dying has more complex implications.

An 18-year-old Sioux woman was confronted with the impending death of her 34-year-old step-mother, L. For months prior to her death, L. had been angry and difficult. The daughter approached her father about her concern: "What will happen when L. dies? I wonder if she"ll i′yumiη us." Her father brought this comment to the attention of the physician and nurse caring for his wife. When asked what it meant, he indicated that the twisted face was caused by a ghost, or "spirit of the dead," and that some ghosts were known to be dangerous. He stated that L. intended to "watch over me" after her death. L.'s comment and his daughter's observation had caused deep concern on his part.

The Lakota term, explained in this context, provided insight into special meanings L.'s eventual death might have for the survivors. Her ongoing care and eventual death had to be discussed in terms that took into account difficult interpersonal relationships and Sioux beliefs. It was necessary to defuse the sense of blame and guilt felt by family members who, while providing L.'s day-to-day care, had been the target of her anger. A direct discussion of Sioux beliefs regarding interactions with the dead was undertaken.

To interpret i′yumiη as an abstraction for impending loss, stress, grief, frustration, and anger misses the concrete Sioux concern about interference from the dead and the Sioux experience with ghosts or spirits. There was clear evidence that the family's views were not idiosyncratic. According to Buechel (1970), i′yumiη is also used in the longer phrase wana′ ġi i′yumiη, which literally translates "ghost distorted/twisted face." L.'s husband had also referenced this term, further clarifying the nature of his concern. For these reasons, the discussions held with the father included reference to the prayers and practices differing Plains Indian peoples have used to protect the living from the potentially malevolent influence of the dead.¹

Lack of Linguistic Equivalency

Many concepts about "what's wrong" are sufficiently ethnocentric that they lack equivalents in other languages.

Cross-cultural care is replete with terms and ideas that may seem close in that they describe a similar behavior or physiologic state, but they are often different by definition or common usage. For example, the Navajo term iich′ aa (moth sickness) describes a form of mental illness. It is seldom referenced by interpreters, however, because it implies an etiology that relates to incest. It is not a generic term for mental illness, and in common Navajo usage it may relate to epilepsy or epileptiform attacks. It is an example of the difficulty going from a common English term to its parallel in a language that lacks a clear equivalent.

Lack of linguistic equivalency is complicated by the fact that biomedicine has not been a model in many societies, and the major segments of biomedical lexicon may be missing from the language or target populations. This problem is illustrated by an attempt to produce a term for allergy in a Vietnamese–English medical guide. There is no equivalent term in Vietnamese. In the 1980 Vietnamese edition of Wagner's Medical Guide and Glossary, we find "allergy—di u"ng." Back-translation of the Vietnamese phrase reads "unusual reaction." Di u"ng replaced a phrase from an earlier edition that back-translated to mean "a kind of symptom that is easy to get." The translators were clearly having difficulty creating a Vietnamese equivalent to a biomedical term. Attempting to coin a new Vietnamese term is not a solution; the phrases developed as Vietnamese "equivalents" clearly miss the special meaning and intent of the term allergy. Clinically, di u"ng is useful only in the context of a broader, more descriptive defining process.

Health care providers often cope with language issues by the use of written instructions, questionnaires, and educational materials. This became a major effort in clinics and health care systems that had to deal with the influx of refugees from Southeast Asia in the 1970s. A number of issues are operative here. First, a significant subset of the group (e.g., the Hmong and Mien hill tribes) came from nonwritten language backgrounds. Second, a subset of those from rural backgrounds may have used languages that are written (e.g., Lao or Khmer) but are themselves functionally illiterate. Third, references to special terminology, terms such as anxiety, allergy, contagious, and pap test, involved a complicated process of translating these ethnocentric concepts into languages that have no conceptual models for comparison.

1. A Cree prayer illustrates some of the historical tradition associated with rites at the time of death in Plains and Woodland Indians (Dusenberry, 1962):

Go. Go straight ahead.

Do not take anyone with you.

Do not look back.

When you reach your destination, talk for us.

Tell them not to trouble us.

Or not to come here and take anyone else away.

In an interesting and informative example, Werner and Campbell (1973) describe preparation of an interview schedule to be used as a guide to assist bilingual interpreters in performing a Navajo health survey. The survey included the question: "Did you ever have measles?" The nearest literal translation into Navajo follows:

Werner points out that the three terms lichíí', 'a̧a̧h, and ha′ajeehísh are translated together as measles in most Navajo dictionaries. In common use, however, they indicate any kind of rash!

Special Use of Language, Dreams, and Hallucinations

Lack of familiarity with communication style robs communicants of the ability to interpret meaning and to be predictive about what someone will say or do.

Nonliterate societies use language in ways that surprise outsiders. Verbal interchanges become the basis for agreements. People who use written languages, in contrast, frequently view verbal exchanges as casual and often will not commit to or believe something until they "see it in writing." since religious and healing practices are based on oral traditions in nonliterate societies, the spoken word is often imbued with power. A Cree couple explained that words have power:

It's not just words. It is meaning. For example, a person wants to get a job. He goes out and looks for work. Someone else is saying he won"t get it. That is witch talk, for then he won"t. There is no special language a person uses. It can be done regardless of race, creed or color. That is why one must be careful what he says. (Dusenberry, 1962)

Thoughts, intuition, dreams, and hallucinations are also regarded in a different light. Dreams may be predictive, hallucinations the source of great interest, and intuition may be attributed to an external source.

This use of language leads to a certain level of caution in inquiry, agreements, and interpersonal interactions. Many traditional patients are uncertain about the intense interest shown by practitioners. Positive interest may be mistaken for the willingness or ability to do or to act on something. For example, the comment "We might do something about that" means "we might, … if" to the practitioner. It is often misinterpreted by traditionals to mean that "they said they were going to do something about it, they"ll take care of it." This miscommunication of intent is common enough between English speakers. It is magnified in cross-cultural settings and in any circumstances that are unfamiliar.

Assessment of mental status becomes difficult. For example, in "some non-literate societies there is anxiety-free acceptance of and willingness to describe hallucinatory experiences … hallucination per se is seldom disturbing; its content is the focus of interest" (Zola, 1966, p. 618). Hallucinations, like dreams, may take on concrete meanings. Since neither is likely to have played a major role in the training and life experience of biomedically trained practitioners, they are often missed as the keys to an illness pattern:

A 52-year-old Inupiat Eskimo hunter/trapper and minister had unrelenting flank pain. Extensive inpatient evaluation in three different institutions, including a university referral center, had failed to reveal a diagnosis. After two and a half months of inpatient care, he was being managed as a chronic pain problem. The inability of physicians to resolve his problem led to a period of marked anger and panic. He threatened to leave the hospital and discontinue evaluation, and demanded increased medications. He became disruptive on the ward.

An interview undertaken at this juncture revealed that he had dreamed about his deceased relatives (parents and a brother):

"My mother and father were sitting on the ice with wet clothing … they asked me to help change their clothes … I sat down and changed my own socks."

"My brother was setting a seal net, he asked me to help … I sat down on the shore and told him what to do … but I didn"t touch the net."

His concern over the dreams had led to a long distance radio phone call to his wife. She shared his fears; "You didn"t touch their clothes did you?" When asked what would have happened if he had touched the net or his parents" clothes, he quickly stated: "Then I would have been like them." He had clearly become convinced that his own death was imminent. (Putsch, unpublished, 1980)

The dreams were telling the patient what's wrong, what's going to happen—things the doctor didn"t know about. He was using his dreams, language, and thoughts in a concrete, predictive fashion. Thus the formula, to think/wish/dream something = to cause it = to do it, a formula for magical thinking, seemed to be playing a role in his illness. His revelation of the dreams was induced after multiple prior attempts to assess his mental state had been unsuccessful. The key was a shift in interviewing that took his disparate language use into account. He was told that the interviewer knew a man who could hunt caribou by dreaming. This comment prompted dreaming stories from the patient and eventually the story of his own dreams. He subsequently reported a long history of events that led to his illness and that involved a traditional explanation of the entire process. The discussions led to the loss of need for pain medication. Previous assessments were based on direct inquiry about feelings, something Eskimo individuals are socialized to keep to themselves.

Native American patients are reluctant to tell health care providers about a hallucination or dream experience. The risk of labeling is too great, and there is concern that the dominant society would take such talk as evidence of psychosis. This is no surprise; Westerners also avoid discussing hallucinatory experience. Rees (1971), in a study of the "hallucinations of widowhood," found that, with one exception in 137 cases, Welsh widowers and widows never discussed their hallucinatory experiences with either health care providers or ministers. Those who had talked about it did so only with friends. The Welsh experiences of hallucinatory phenomena remain within the framework of acceptable "folk" expression and interchange. They are simultaneously excluded from formal interchange with authority figures.

In clinical settings, dreams often play a role in patient concerns, and this is true of patients from a wide variety of backgrounds, written language or no. However, in rural patients and nonliterate groups, dreams may be viewed as predictive. Individuals and groups have used dreams to hunt, to diagnose, and to predict the future. It is clear that dreams are often key to the assessment of mental status of Native Americans. This may also hold for evaluating mental status and health concerns of otherwise somaticizing Asian patients.

Monolingualism and Interpreter-Dependent Health Care

"Cross cultural interpretation … requires special training and highly developed skills. Just any bilingual person, chosen at random, is not sufficient."(Young, 1968, p. 17)

Interpretation in health care is a difficult task and requires exceptional skill. Monolingual providers who work in settings where other languages are in use should use trained interpreters whenever possible and simultaneously should attempt to upgrade their own skills in both language and interpreter-dependent transactions. The presence of an interpreter adds a whole new aspect to provider–patient exchanges.

Two diagrams of the patient–interpreter–provider communication triad are presented in Figure 229.6. The diagram on the left presents a hypothetical situation in which all three parties are contributing to the same database, considering the same events, and discussing the same questions and answers. "Same" in this context implies a relatively high degree of equivalence in each participant's view of the content of the exchange. This hoped-for situation is not borne out in actual practice. The diagram on the right more closely approximates interpreter-dependent information exchange. One database is shared by the patient and the interpreter, and a second by the interpreter and the provider. But note that each participant also has an independent view of the transaction (represented by the nonoverlapping areas marked A, B₁, B₂, and C). At issue is the degree to which A + B₁ and B₂ + C are equivalent.

Figure 229.6

Cross-cultural communication is strongly influenced by the extent to which the patient, the provider, and the interpreter share the same understanding and beliefs about the medical problem under discussion. The ideal model shown on the left is seldom (more...)

Studies of recorded back-translated materials reveal a number of common problems that interfere with the generation of equivalent messages. Many information transfer problems are linguistic: bad paraphrasing, lack of linguistic equivalency, substitution or addition of terms, incorrect numbers and names, and garbling of the message. Other issues include interpreter beliefs, biases, emotions, disparate views of meanings (of events, terms, and transactions), and the personal image of the interpreter. Messages and meaning can be distorted for a wide variety of reasons.

Summary

Miscommunication is often a source of provider–patient difficulties. Discrepant meanings and intent are often at the root of the trouble. These discrepancies often go unrecognized. The special character of cross-cultural communications makes it imperative that providers address these issues with care and work to develop their own communication skills.

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