Communication involves the exchange, processing, and interpretation of messages—both verbal and nonverbal. In this complex process, there are myriad opportunities for miscommunication: messages can be incomplete, confusing, and contradictory; language barriers as well as emotional and physical distractions can interfere with the receipt and relaying of information; and unspoken assumptions can influence the meaning one person attributes to another’s statements or actions. Much of this takes place outside of conscious awareness. With this in mind, this section reviews three fundamental aspects of communication to which the clinician should direct particular attention: (1) attempting to understand the illness from the patient’s perspective; (2) ensuring that the patient understands, as much as possible and at an appropriate level, biomedical explanations of the illness and its treatment; and (3) guiding patients through the ritualized clinical encounter and the health care bureaucracy in ways that increase their familiarity and comfort with it.
Barriers to health care affecting both immigrants and disadvantaged minority groups—such as lack of insurance and other financial resources, physical distance, and low literacy—often make biomedical treatment an option of last resort. Clinical consultations for such patients will frequently be more time consuming and require increased patience by the clinician. Extra effort may sometimes be needed to teach such patients to be assertive, ask questions, and raise concerns. Clinicians who treat large numbers of such patients will benefit the most from reading about and becoming personally familiar with them outside of medical settings.
Explanatory models refer to theories of disease causation, prognosis, typical symptoms, and appropriate treatment. Eliciting patients’ explanatory models of disease offers unparalleled insight into their sense of self and relationships with significant others while yielding clues about how they are likely to interpret, resist, or accept biomedical explanations and treatments. Knowledge of the patient’s perspective also facilitates the ability to ease patient fear and anxiety. Understanding the patient’s explanatory model of illness is especially important when treating potentially debilitating chronic conditions, where nonadherence is a common concern and where the psychosocial dimensions of illness loom large.
Typically, the most important component of a patient’s explanatory model is the idea of illness causation (see Table 15-2). To elicit this belief the clinician can ask, “What do you think caused your problem?” and then listen carefully to the answer as it is likely to reveal crucial feelings related to moral failings, discord with significant others, financial and practical challenges in daily life, and whether there is a sense of hope for the future. The clinician should not expect patients to answer questions about causation with simple and mechanistic explanations. Additional probing may also be required. For example, the clinician could follow up with questions, such as “What do you think you have? What is the name you give to this condition?” “Why do some people get this illness and not others?” “Who or what is responsible (or to blame) for this problem?” and “Do you ever think that you did (or didn’t do) something to bring this on yourself, or that someone else did (or didn’t do) something?” Additional questions can allow patients to elaborate on their explanatory model: “What do you think should be done to treat you?” “Do you think a complete cure is possible?” “How long will the problem last?” “What do you think needs to be done to relieve this problem?” The advantage of such questions is that they are open ended, are applicable to every patient, and can help to correct or refine initial clinical assumptions or preconceptions. They are also powerful in their ability to provide clues about what the patient may find difficult to understand or accept when it comes to explaining the illness in biomedical terms.
Table 15-2.Questions to elicit a patient’s explanatory model of illness. ||Download (.pdf) Table 15-2. Questions to elicit a patient’s explanatory model of illness.
What do you think caused your problem?
What do you think you have?
What is the name you give to this condition?
Why do some people get this illness but not others?
What do you think needs to be done to relieve this problem?
Some patients, especially recent immigrants, may be reticent about sharing their explanatory models of illness out of concern that their beliefs will be viewed as ignorant or superstitious. Alternatively, such patients may feel that they have come to hear the doctor’s expert opinion, and that their own perspective is of little consequence. It is sometimes prudent to allow patients’ explanatory models to emerge slowly, through gentle probing, over the course of several visits. Inference combined with direct questioning (e.g., “other patients believe X, what do you think about this?”) and background knowledge of the patient’s social location will often be necessary to form a coherent picture.
Patient centeredness and involving patients in complex decisions about their health care are important goals in medical care; however, it is still the case that most medical decisions are made by physicians with little input from patients or families. In shared decision making, a patient and clinician work together to evaluate trade-offs based on the patient’s values and preferences in light of the risks and benefits of various treatment options. Shared decision making is most important for preference-sensitive conditions in which there are at least two legitimate treatment options available but each has different levels of risk or types of side effects.
Imparting accurate information about the nature and course of the disease, framing numerical risks, and eliciting a patient’s outcome preferences are all important for shared decision making. Successfully sharing decisions, however, also requires a consideration of cultural influences. For example, certain patients (e.g., some older patients or patients who grew up in authoritarian societies) may not wish to participate in making a final treatment decision but instead wish to be involved only in articulating preferences and in selecting the most desirable outcome. Thus, the process of promoting patient centeredness should involve directly asking patients how involved they would like to be in decision making.
In emphasizing the importance of rational decision making, traditional shared decision making approaches implicitly stress how patients “should” behave while often overlooking how they, in fact, do behave. To address these challenges, clinicians should strive to meet patients closer to where they actually begin the decision-making process. Eliciting patient explanatory models may allow patients and clinicians to consciously recognize and correct misconceptions. Sources of patient fear can be elucidated and, where possible, reassurance can be offered. Patients can also be asked to recount stories about other people who faced similar illnesses so that their attitudes and perceptions can be clarified and they can be helped to understand key differences between these stories and their own circumstances.
Sometimes there is medical uncertainty about the value of a medical test or intervention (e.g., prostate-specific antigen [PSA] screening), or there may be more than one treatment option, none of which is clearly superior in terms of prevention, cure, or control of symptoms, but each of which differs significantly in terms of cost or in the likelihood of various adverse effects on quality of life. In these instances, before taking action the clinician should attempt to gauge both the patient’s desire for information as well as preferences for decision making. Studies have shown that most patients wish to be “maximally” informed about their diseases as well as medical treatments and evaluations, but there is variability in their desire to assume or share responsibility for making actual treatment decisions. Only through probing is it possible to determine how much information patients want and how much they want to share in the decision-making process. Providing too much information or attempting to make the patient accept responsibility for a medical decision can be counterproductive, but so can an approach that is overly paternalistic. One strategy is for the provider to state that there is a choice and perhaps some medical controversy or uncertainty; briefly mention the pros and cons of each option; elicit patient outcome preferences; and then wait for the patient to ask for more details, voice concerns, or express a preference.
CASE ILLUSTRATION 1
A 72-year-old World War II veteran was diagnosed with localized prostate cancer. The patient is adamant about his desire to undergo curative treatment with radical surgery after the urologist explains that the likelihood of cure is the same with radiation therapy, after he reviews the specific and significant numerical likelihood of serious side effects associated with surgery and radiation, and after he proposes that watchful waiting and active surveillance are also reasonable options. After carefully eliciting the patient’s understanding of the disease and its treatment, the urologist learns, from the patient’s perspective, that: “cancer is a death sentence,” “the only way to cure cancer is by cutting it out,” and “radiation is dangerous.” By taking the time to understand the patient’s explanatory model of illness, the urologist is in a position to more effectively address his misconceptions and fears, thus allowing the patient to make a more genuine, high-quality decision about his care.
Members of some groups, including many immigrants, may seem to be fatalistic in their attitudes toward illness. They may be passive about seeking treatment, persist in unhealthful behaviors, or accept misfortune because they believe it is preordained. It is important not to assume that this style of explaining and dealing with illness is indelibly rooted in the culture or religion of the patient’s racial or ethnic group. In fact, fatalism is widespread and is common among people who have little control over the circumstances of their lives. It also emerges out of a kind of valid logic that observes that serious illness can befall even those who have no bad habits and live a “clean” or “virtuous” life. Fatalism does not usually imply a lack of interest in preventing or treating disease. Rather, it can be viewed as an idiom for describing a person’s perceived powerlessness in the world, lack of hope, and even distrust. The doctor can approach this problem by acknowledging the real challenges the patient faces, and by clearly articulating the practical steps the patient can take to resolve or manage the illness.
CASE ILLUSTRATION 2
A 56-year-old African American woman who completed a grade-school education declines colon cancer screening. On questioning, she believes that cancer is not preventable and cannot be cured. Cancer terrifies her and she therefore sees no point in learning she might have it. The clinician explains that from a medical perspective cancer takes many years to develop, and that in people aged over 50 years it can happen in a few individuals out of a hundred. She then tells the patient that the purpose of colon cancer screening—a relatively safe procedure performed thousands of times every year—is not to find a big cancer (which would be extremely unusual) but to save lives by finding a few areas (polyps) where cancer could develop and then snip them out. She provides the patient with an illustrated brochure to look over and consider.
In addition to the patient’s beliefs about cancer, the clinician suspects that she distrusts the idea of doctors doing something to her that she, herself, has not requested or previously thought about. Over the course of several appointments, the clinician gently revisits the issue. A year later, the patient agrees. Trust—developed through a continuing relationship, manifest concern on the part of the clinician, and openness in explaining the purpose of medical tests—was a key factor in the patient’s decision. Had the patient continued to decline screening, however, the clinician appropriately would have respected her decision, without overt negative judgment.
Some immigrants and older patients may be exceptionally reserved or deferential in clinical interactions, often preferring to avoid direct eye contact. The clinician should not assume that such patients are shy, uninterested, unintelligent, or uneducated simply because they avoid eye contact, agree with everything the doctor says, express a great deal of uncertainty about instructions, or are not forthcoming with information. In these circumstances, the clinician should speak clearly without reverting to an overly simplistic, commanding, frustrated, or patronizing tone of voice. Further clinic visits and gentle elicitation of questions and concerns may be necessary before the patient begins to interact more openly. The patient’s behavior may reflect not only cultural norms toward those in authority, but uncertainty, fear, the expression of trust through passivity, or a desire to attain a better impression of the clinician before revealing intimate details.
CASE ILLUSTRATION 3
An older patient, originally a schoolteacher from the Philippines, is hospitalized for community-acquired pneumonia. The hospitalization is uneventful and on the day of discharge, the medical team enters his room to review his discharge instructions. When asked for his input about preferred follow-up or his understanding of the ongoing treatment, he averts his eyes, speaks quietly, and seems unable to comprehend the discharge plan. He repeatedly asks for instructions about the various forms. The team leaves the room uncertain of his understanding. Later that morning, the pharmacist on the team returns to review his discharge medications with him. She sits down and speaks softly and respectfully. Eventually, he opens up and it becomes apparent that he understood the prior conversation completely and speaks articulately about his concerns, although he continues to avoid eye contact.
Trained medical interpreters can greatly facilitate patient–clinician communication and improve quality of care. Unfortunately, perhaps because of economic constraints and clinicians’ beliefs in their own ability to simply “get by,” well-trained interpreters are underused in many medical settings, with negative consequences for patient care. For example, although clinicians with some ability in conversational Spanish may assume they understand a Puerto Rican patient’s use of the term “ataque de nervios” (literally a “nervous attack”), the patient is actually referring to a culturally specific syndrome with identifiable precipitants and clear symptoms that has little to do with a “nervous breakdown.” Although family members often act as de facto interpreters, this can also introduce problems. For example, a relative who “already knows” what is wrong with the patient may not wish to bother the physician with the full details of the patient’s complaints, thereby omitting important symptoms. Children and adolescents are inappropriate interpreters for many reasons, including an often incomplete mastery of English, insufficient knowledge of the subtleties of translation, and issues of relationship and status.
Trained medical interpreters can provide more than literal paraphrasing: they can serve as ‘cultural interpreters’ by explaining patient’s illness labels and idioms for the practitioner, and translating biomedical concepts and instructions into the patient’s vernacular. Interpreters should be treated as full members of the health care team. Prior to the interaction, the clinician may want to meet briefly with the interpreter to review the goals for that discussion (e.g., addressing the patient’s understanding of and compliance with a particular medication). In addition, the clinician should periodically stop the interview to seek clarification from the interpreter: “The patient has mentioned ‘nerves’ a few times. I was assuming that she felt nervous, but now I’m not so sure. Could you explain to me what she means?”
When using an interpreter, it is important to consider the physical arrangement of the participants. The clinician should always face and speak to the patient directly. The interpreter can sit next to the physician (though some patients may find this arrangement threatening), or the patient and interpreter can sit side by side. Some clinicians prefer the traditional triangular arrangement so that all parties have equal space and symbolic power, but the easy flow of conversation may be compromised as patient and provider often cannot resist the impulse to direct their attention toward the interpreter instead of toward each other.
Understanding illness from the patient’s perspective—traditionally regarded as the essence of cultural competence—must be balanced by the equally important task of knowing how to communicate biomedical explanations about the disease and its treatment to the patient (i.e., serving as interpreter of biomedical culture for patients). The desire for such information is usually one of the patient’s primary motivations for visiting a doctor. The clinician should offer explanations in terms the patient can understand and then gently test this understanding.
Naming and Explaining the Disease in Neutral Terms
Naming a disease helps to transform a patient’s inchoate fears into something that can be perceived and addressed directly. Speaking about disease in neutral and mechanistic ways can also dispel feelings of shame and ideas about etiology that are rooted in personal weakness and social failure. Patients will often seize upon, and benefit from, explanations that appropriately relieve them of personal responsibility for their misfortune. Giving a specific name to a disease and explaining it in neutral terms should be regarded as one of the primary goals of communication. Reaching this point, of course, may depend upon an initial period of testing and observation.
CASE ILLUSTRATION 4
A 65-year-old immigrant and former physician is diagnosed with cancer. The clinician is able to elicit the patient’s belief that cancer often occurs in people with “repressed personalities.” Believing that he brought his disease upon himself because of such a character flaw, he feels a lack of hope and is less inclined to treat the disease. He benefits from an impersonal biomedical interpretation of cancer that focuses on damaged cellular DNA leading to unchecked cellular proliferation, and treatment aimed at destroying aberrant cells.
Although reductionistic disease labels and explanations are often helpful, they may contribute to the medicalization of conditions whose etiologies reside in adverse environmental (e.g., polluted air and water) or social circumstances (e.g., racism, intimate partner violence, sexual abuse, and work-related stress). In other words, defining illness entirely in terms of how it adversely affects the body can direct attention away from other, more fundamental causes. It is important to remain mindful of, and at times acknowledge, the broader context that gives rise to the illness. This is often very difficult for physicians to do, in part because they are not trained to recognize these links and are limited in their ability to resolve problems such as poverty, unemployment, poor housing, or lack of education and opportunity. For example, declaring that a patient’s asthma is made worse by living near a factory from which, for economic reasons, the patient cannot easily move away may imply that nothing can be done about the problem. Nonetheless, awareness of such constraints can help the clinician to better understand and sympathize with the patient and tailor therapies that are realistic and appropriate. In addition, it is extremely common for patients of all backgrounds to believe that illness is caused by breaches in the moral order, social discord, and the failure of one’s self or significant others to fulfill expected roles. Purely mechanistic biomedical explanations cannot simply replace these types of beliefs, which tend to be deeply rooted and resistant to change. Educating the patient about disease terms and pathophysiology should complement but not supersede the importance of understanding and acknowledging these other aspects of the patient’s explanatory model.
When it is possible to trace the etiology of disease to potentially destructive personal behaviors, such as “risky” sex, smoking, alcoholism, and drug abuse, or the worsening of disease to medical nonadherence, two pitfalls should be avoided. One is emphasizing personal culpability at the expense of helping the patient to understand the nature of the disease itself. Without adequate education, patients may have a difficult time perceiving the relationship between their behavior and the outcomes these generate, and will therefore see less reason to make changes. Although it is important to stress that certain habits are harmful and should be altered or discontinued, this should be done in a straightforward and nonjudgmental manner. The second pitfall is failing to acknowledge the personal situations and social contexts that contribute to or sustain these behaviors. Low self-esteem, depression, chronic pain, social isolation, lack of “legitimate” employment, and a strong desire to experience a sense of social belonging can contribute to many varieties of harmful and risky practices. To the extent possible, clinicians should attempt to determine the factors that perpetuate or encourage harmful behaviors and discuss these with their patients in an open and frank manner. Doing so will demonstrate empathy and concern, and help patients understand how their behavior (arising as it might for understandable reasons) should nonetheless be modified, and how this might be achieved.
Naming the disease is a cornerstone of communication in the biomedical model. However, a more flexible approach to informing patients of their diagnosis is often appropriate, particularly when the diagnosis is cancer or a terminal illness. Knowledge of a patient’s social location and explanatory models of illness (including cancer), as well as in-depth questioning of the patient and family, will provide the best understanding of cultural differences and preferences. Chapter 3 offers a more complete discussion of this topic.
Evidence-Based Medicine and Minimizing the Overuse and Misuse of Clinical Services
Promoting clinician stewardship over limited health care resources and ensuring the delivery of cost-conscious, evidence-based care have become increasingly important as health care expenditures have risen to unsustainable levels in the United States. Influences that promote the overuse and misuse of clinical services include financial gain for clinicians as well as defensive medicine (ordering tests, procedures, or visits primarily in order to reduce perceived exposure to malpractice liability). Patient expectations—shaped by clinicians themselves, the popular media, direct-to-consumer advertising, and anecdotes of friends and family—are also important drivers of medical overuse. It can be a significant challenge convincing patients that more care, more expensive care, or even the latest technology do not necessarily mean better care, especially because unmet expectations for care can be associated with less patient satisfaction and reduced intentions to adhere to prescribed therapy. Nonetheless, evidence-based practice often depends on a clinician’s ability to elucidate patient expectations that are unrealistic or not medically valid, the beliefs and worries that underlie these, and then on an ability to engage patients in conversations that educate and, where possible, reassure. Helping patients to feel like they have been understood is a key way of earning their trust and realigning their expectations.
CASE ILLUSTRATION 5
A 32-year-old woman, the daughter of a prominent local philanthropist, complains of chest pain and demands that her physician obtain a stress test to make sure she is not at risk of having a heart attack. The patient, an avid runner, does not experience exertional chest pain and otherwise has no cardiac risk factors. On questioning, the physician learns that the patient recently broke up with her boyfriend and that her parents are contemplating a divorce. The physician obtains an EKG and informs the patient that it is normal. She explains to the patient that chest pain is not unusual among patients living through significant stress, that these symptoms almost always resolve with time, and that she has no risk factors for cardiac disease. She further explains that stress testing in her situation has a real likelihood of leading to false positive results, prolonged anxiety, more clinic visits, and perhaps even additional, invasive testing. Ultimately, the physician is able to help the patient understand that a stress test is unnecessary. The patient agrees to return in a week to reassess how she’s feeling and consider whether referral to a therapist might be helpful.
For patients of many backgrounds, profound stigma is often attached to behavioral and psychiatric diagnoses. Labels such as “depression,” referrals to psychiatrists, or prescriptions for “mind-altering” medications may be strongly resisted, interpreted as insulting by some, and may severely compromise the practitioner–patient relationship. For such patients, somatization is often the most “legitimate” way of expressing distress. If there is any doubt regarding the patient’s perception of psychiatric labels and referrals, the clinician should carefully explore the meanings that patients and their families attribute to them.
CASE ILLUSTRATION 6
A Mexican immigrant, working-class mother is taken aback by the pediatrician’s diagnosis of “attention deficit disorder” in her child and concomitant referral to a child psychiatrist and prescription for stimulant medication. She believes these recommendations imply that her child is “crazy” and, by extension, that she, first and foremost, as well as the family as a whole, have somehow failed. Her anguish is compounded by the extreme importance she attributes to her role as a mother and homemaker. Furthermore, she holds that psychiatric medicines are “too powerful” for her child who, like all children, is “sensitive and vulnerable.” She would have benefited from a discussion that elicited these beliefs in advance, followed by an approach that acknowledged her fears, reaffirmed her maternal skills and concern, and attempted gently to address her beliefs and values.
Patient Interpretations of Acute Illness, Chronic Illness, and Preventive Medicine
Many patients do not clearly differentiate acute from chronic illness, nor do they make distinctions among curing, managing, and preventing disease. Commonly, they assume that symptoms or diseases are self-limiting or curable with a single course of therapy. This can frustrate the clinician’s ability to provide education and can contribute to poor adherence. If in doubt, the clinician should determine whether patients believe a cure is possible (not generally the case with chronic illness) or whether patients believe the absence of current symptoms implies the absence of future disease (suggesting poor understanding of preventive medicine). Gently correcting patients’ misconceptions should be viewed as an ongoing process that takes time and bears repetition.
Patients with Poor English Literacy
It is estimated that up to 21% of American adults are functionally illiterate and many more are only marginally literate, limiting their ability to understand medical information and engage in meaningful discussions with their providers. Feelings of embarrassment may lead patients to conceal this problem. Strategies for managing such patients include speaking slowly, using simple terms, targeting written materials to at most a fifth-grade reading level, and using clear pictures and diagrams whenever possible. Instruments such as the Test of Functional Health Literacy in Adults (TOFHLA) can provide rapid estimates of the ability to read and comprehend common medical and lay terms. Such tools can assist clinicians in tailoring both written and spoken information, and are probably more accurate at assessing the patient’s reading and numerical skills and ability to function effectively in health care settings than subjective clinician impression alone.
Failure to discuss medications is one of the most frequent lacunae in practitioner–patient communication. Misunderstandings and fears about medications are extremely common and are major contributors to nonadherence. Pharmaceuticals, however, are generally the most tangible and therapeutically important products that result from the clinical encounter. Special care should therefore be given to explaining their purpose, mechanism of action, and common side effects. Eliciting patient concerns and questions to uncover erroneous beliefs is also important. This is particularly likely to benefit patients who are reticent or unable to express these concerns on their own.
Sometimes it may be helpful for clinicians to personalize information by acknowledging common challenges they face in educating and treating patients.
CASE ILLUSTRATION 7
A patient has been diagnosed with hypertension. After explaining the benefits and risks of treating hypertension with medication, the physician tries to help the patient see the clinical challenge from her perspective. She explains, “As doctors, we often have difficulty helping patients understand why they should take medicines even when they have no unpleasant symptoms. Understandably, patients often hate to take medicines, especially if they feel perfectly fine. Yet medicines are important for preventing very serious problems down the road.”
This kind of approach may help some patients to understand and sympathize with the challenges faced by the clinician, promoting a sense that the two are allies in achieving a common objective.
Assessing Patient Understanding
To ensure that biomedical explanations are correctly understood, the clinician should ask patients close- and open-ended questions about their disease process and ask them to repeat instructions. For example, “Tell me what you understand about the cause of your diabetes and what you think will happen if we cannot adequately control your blood sugar. How often should you check your blood sugar? What should you do if you feel light-headed and sweaty?” Such checks will help to reinforce knowledge and understanding and identify areas that benefit from further counseling.
The Clinician as Cultural Broker and Institutional Guide
As described above, cross-cultural communication is enhanced by attention to patients’ social location because it allows provisional inferences to be made about how patients, as individuals, are likely to interpret and respond to their illness. Initial clinical impressions are then modified by eliciting patients’ explanatory models of illness. This information helps to tailor communication regarding the biomedical perspective. Finally, communication is further enhanced by understanding how patients perceive key features of the clinical process and by guiding them through its ritual and bureaucratic aspects.
Repetitive and predictable patterns and rules circumscribe patient–clinician interactions. In the ambulatory setting, for example, the nurse measures the patient’s blood pressure and then brings the patient to see the physician, who directs the proceedings according to a predefined format of greeting the patient, asking questions in a certain order, examining the patient, and offering explanations and recommendations. The patient is given a specific place to sit and generally knows that the consultation will last a fixed amount of time. In the hospital, the medical team rounds in the morning and obtains a standard template of subjective and objective information. The basic format of these rituals is fairly simple and can be readily learned by patients and by the new initiates into the profession.
Such ritual aspects of medicine can both facilitate and impede effective communication. For example, consistency minimizes confusion about what is acceptable and unacceptable and about what will happen. Ritual offers a sense of security when patients are undressed or are sharing personal information. The ground rules and scripts of ritual are translatable from one setting to another and operate even if practitioner and patient have never met. They allow the involved actors to focus greater attention on the content of their exchanges and, in themselves, these rituals can be comforting and even therapeutic.
On the other hand, rituals can impair communication if patients and practitioners differ in their expectations about how they are supposed to work, or if rituals become inflexible, blind routines that leave little room for digression, variation, and opportunities for patients to express themselves freely and in fully emotional ways. This frequently happens when the clinician is pressed for time and wants the patient to provide the “facts” as tersely as possible, or when the patient yields all spontaneity of self-expression to the perceived all-knowingness and authority of the doctor. Ritual should not become so fixed that its participants become inflexible. Awareness of these pitfalls and the ability to make spontaneous adjustments to unspoken aspects of ritual can do much to enhance communication with the patient. Brief, unexpected, or even surprising disruptions to ritual—such as a joke, a doctor’s personal reflection, allowing the patient to shed a tear or relate a piece of medical history during the physical examination, or briefly and politely answering a patient’s personal question about the doctor or his family—can, when judiciously applied and without breaking the overall structure of the encounter, foster more effective communication and enhance the therapeutic relationship.
For almost all patients, illness is not simply an individual malady, but a social disruption that both affects and requires the involvement of significant others. The paradigmatic private, dyadic nature of biomedicine’s doctor–patient relationship can also impair communication when working with patients for whom the involvement of family members is very important. When desired by the patient, and to the extent possible, allowances and arrangements should be made to incorporate the family into diagnostic and treatment plans (see Chapter 11).
Health care is often highly fragmented. The increasingly sharp separation between hospital and ambulatory medicine, a large variety of subspecialists, and the growing importance of health care “teams” means that patients often interact with a bewildering variety of individuals whom they have never previously met and whose roles are not always apparent. Carefully guiding patients—anticipating their possible confusion, explaining the function of different health care workers, and encouraging patients to ask questions at any point during their trajectory through an illness episode—can go a long way toward alleviating their fear, misunderstanding, and distrust. Providers should be especially sensitive to immigrants and other vulnerable patients who may have a particularly poor understanding of how the health care system works. Providing education about where to report for laboratory work and procedures, when results will be returned and what will be done with these, the roles of various office staff, the hours of operation, rules pertaining to the presence of children, and so on will increase efficiency, improve patient use of resources, and also increase patient trust and adherence by demystifying what seems to be a complex and threatening bureaucracy. Of note, some patients may not wish to fill out forms because of fears of deportation; it is important to be explicit about the purpose and confidentiality of medical information.