JOURNAL OF PALLIATIVE MEDICINE Volume 4, Number 4, 2001 Mary Ann Liebert, Inc.
When Cultures Clash: Physician, Patient, and Family Wishes in Truth Disclosure for Dying Patients ANNE LAPINE, REBEKAH WANG-CHENG, M.D., MICHAEL GOLDSTEIN, Ph.D., ANNE NOONEY, M.D., GEOFFREY LAMB, M.D., and ARTHUR R. DERSE, J.D., M.D.
ABSTRACT We describe two cases involving male foreign nationals (a Chinese and a Georgian) treated in a U.S. hospital. Both patients had terminal illnesses, and both cases involved clashes between families and the treating physicians, which occurred because of differing cultural beliefs about truth disclosure. Based on the specific backgrounds of these two patients, we discuss ethical and cultural considerations and make suggestions for physicians who care for ethnically diverse patients. INTRODUCTION
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has become nearly a moral imperative in this country, because of increased public education, a strong focus on individual human rights, and a growing distrust of the medical industry.1 Autonomy has traditionally been defined as the ability of rational beings to make choices based on accurate information. As physicians, we try our best to provide each patient with sufficient information regarding their disease in order to allow them to make decisions about their own medical care. Autonomy also allows patients to refuse treatment in circumstances in which physicians or family members would want the patient to have treatment for her own good. In recent years, the focus on autonomy has been challenged for possibly neglecting “physician responsibility” or “family integrity, “ and for giving patients too much extraneous information.2 In such an instance, autonomy conflicts with beneficence, the mandate of physicians to act for the good of the patient. Further conflicts arise when the patient, family, and physician do not share beliefs about the ATIENT AUTONOMY
disclosure of the diagnosis and general truthtelling. When patients and families come from cultural backgrounds placing more emphasis on beneficence rather than autonomy, such issues are more likely to occur.3 Nondisclosure seems to occur more frequently with cancer than in other illnesses, likely in part because of the legitimate fear and anxiety that accompany cancer, but also because of cultural beliefs or myths.4 Disclosure of a cancer diagnosis may be even less likely in terminal cases when a bad outcome is expected. This withholding of truth can affect many relationships, including those between physician and patient, physician and family, and among physicians and other health care staff.5 We describe two cases in which the family desires that the patient not be informed of a cancer diagnosis, despite physician insistence. Although the family in the first case is Chinese and the second family is Georgian, they share similarities in their reaction to the physician. Each situation is also unique, demonstrating a variety of issues that can arise from the clash between the physician’s and the family’s cultural expectations and
Department of Medicine and Bioethics Center, Medical College of Wisconsin, Milwaukee, Wisconsin.
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the resultant actions of the physicians. These issues range from family hostility toward caregivers to how to proceed with treatment when the patient has not been fully informed.
CASE REPORT 1: GOING HOME TO CHINA A 71-year-old Chinese gentleman with minimal English skills was admitted to the neurology service of a teaching hospital for left arm weakness and urinary incontinence. Computed tomography (CT) scans of the head and abdomen revealed masses in the right temporal brain, the liver, and both kidneys. Because the appearance of the lesions suggested primary renal cell carcinoma with brain metastases, the team was anxious to biopsy the kidney, but the family refused to inform the patient by translating this request. When the resident truthfully described the patient’s poor prognosis and indicated that the biopsy would unlikely affect outcome or treatment, the family argued that the procedure would only cause discomfort without prolonging life. Furthermore, the family insisted that the patient not be informed of his diagnosis or terminal condition. They requested instead that the physicians tell the patient that he had pneumonia. The neurology resident, who had been raised and educated in Poland, felt it was unethical or even illegal to withhold information from the patient and expressed her opinion to the family. Mistrust rapidly developed and tension between the resident and the family escalated to the point where the family would not allow any consultants to see the patient and would only allow primary caregivers into the room under their supervision. At this point the neurology team then requested a formal hospital ethics consultation. Members of the family included the patient’s wife, his daughter, and a son-in-law. The latter, an American-trained chemist, served as the spokesperson for the group when they met with the ethics team. He expressed the family’s wishes that the father be discharged from the hospital so he could go home to China to die (the plane ticket had already been purchased). They felt that if he were told about the cancer, it would “break his spirit” and he would die before he had a chance to return to his homeland. He emphasized that it was important that the patient die in his home community.
The Ethics Committee was very interested in the cultural implications and perspectives and asked for an American-born Chinese physician to serve as guest consultant. The consultant confirmed that the approach requested by the family, i.e., withholding a terminal diagnosis, is the norm in Chinese culture. Out of respect for each other, families do not tell the patient the truth, so as not to discourage him and the patient pretends not to know the gravity of the illness. The family was not being unreasonable or “unkind” to their father but only upholding the value of community and prioritizing beneficence above autonomy. The Ethics Committee felt strongly that the physician could not lie to the patient and tell him he had pneumonia. The team should ask the patient whether he wished for his medical information to be given to him or to his family and whether they could make decisions for him. The guest consultant asked the patient these questions in the presence of the family (because they were unwilling to allow the physicians to speak to the patient alone). The patient readily agreed that his family should receive the information and make decisions about his health care. According to the wishes of his family, the patient was discharged from the hospital without a biopsy for tissue diagnosis and returned to China, where he died.
DISCUSSION As a result of the decision of the Ethics Committee, three vital outcomes were achieved. The resident was “relieved” of the burden of guilt for not fully informing the patient of his terminal condition. The family met their filial duty of honoring their father’s wishes and protecting him from “hurtful” bad news. Most importantly, the patient was able to return to his homeland to die without further invasive testing. Chinese society is very communal, rather than individualistic. The father of medical anthropology, Arthur Kleinman, describes the Chinese patient as “ . . . part of an immortal vehicle—the Chinese sensibility about the family—which existed before he arrived on the scene, in which he occupies a temporary place, and which after he departs continues on with his descendants and ancestors.” 6 The Chinese family feels a strong obligation to protect the patient from unnecessary stress or worry.
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In many non-Western countries, the family stays in the hospital with the patient, bringing food and providing actual bedside care. Although this may be partly because of the hospital system of care, it also is an avenue for the family to show love and protection. This notion of family as guardians of the patient extends to other groups in America as well. In a recent study,7 African Americans were more likely to perceive the family as protectors against physicians than Hispanic Americans or whites. Chinese society inculcates great respect and reverence for elders. In Asian cultures, being told that one has cancer is perceived as disrupting the revered senior’s serenity in old age and depriving him of hope. The age of 70 is considered a major milestone and celebrations are held to mark having lived a long and full life. This gentleman at 71 had actually lived beyond cultural expectations. If the patient had become symptomatic in China, there is high likelihood that his physician would have quickly acquiesced to the family’s wishes in telling the patient that he had pneumonia and giving him some “treatment” to fit a nonserious diagnosis. Indeed, the physician would probably have followed such a course unless the family intervened to the contrary. Because the patient became ill in America, it required active involvement by the Ethics Committee in order to reconcile the family’s expectations with those of the physician. Even in Japan, which is the most “westernized” Asian country, only 13% of physicians report informing their patients of their diagnosis, but only one third of patients agree with this nondisclosure.8 It would be interesting to assess whether this provider-patient disparity is currently affecting satisfaction with medical care in Japan.
CASE REPORT 2: DYING AND FAR AWAY FROM HOME A 47-year-old non-English–speaking gentleman from the Republic of Georgia was admitted to the hospital because of shortness of breath. He was found to have a malignant pleural effusion resulting from an advanced non-small cell lung carcinoma. His wife spoke English moderately well and translated for her husband. On learning the diagnosis, she explained that she could not tell her husband the nature of his disease, nor its
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severity. She explained that in Georgian culture, having a disease such as cancer is seen as a burden on the family. She felt that if he knew the prognosis, he would be at high risk of committing suicide to protect his honor. She pleaded with the team not to disclose the diagnosis. She added that in Georgian culture, the accepted practice is to inform the family, not the patient, of a terminal diagnosis. A Georgian physician was contacted for advice and he confirmed the wife’s position, stating that traditionally, patients are not told the severity of grave illnesses, and that families routinely make medical decisions on behalf of the patient. The oncology consultant expressed significant reservations. He noted that most treatment protocols require informed consent and was concerned that having a surrogate provide consent when the patient was decisional, yet uninformed, would be unethical (and potentially illegal). This was particularly at issue because of the potentially severe side effects of treatment. At this point, the decision was made to consult the Ethics Committee. The Ethics Committee agreed that the patient could ethically waive his right to be informed of his diagnosis and the risks and side effects of treatment and designate his wife to determine the direction and extent of his treatment. Nonetheless, the committee strongly encouraged the physician to encourage the wife to disclose the patient’s diagnosis, treatment options, and risks. The risk manager for the physician’s practice group gave the opinion that under the informed consent law, a patient could not give a blanket waiver for all the procedures and treatments he might have, but needed to be asked separately for a waiver for each new procedure. Based on the committee’s previous experience with the aforementioned patient from China, it was recommended that the team approach the patient in the presence of an independent interpreter. The patient was asked whom he wished to be informed of his diagnosis and who should be asked for permission for procedures and therapies, including painful ones. The patient clearly indicated that he wished his wife to take full responsibility in all situations. Palliative treatment with radiation to the chest wall was initiated, but unfortunately, the patient did not respond and all aggressive therapy was discontinued. Three months later, he returned to the hospital and died.
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Discussion Similar to the Chinese, Georgians and Russians value beneficence over autonomy and the focus is on the family unit. In Georgia, adult males may feel that the family’s burden of caring for them during terminal illness is in conflict with their presumed roles as paterfamilies; it is a disgrace. Remaining in the dark about their terminal diagnosis allows them to maintain a sense of dignity and control in their final years. A second issue may stem from the role of medicine in Georgia. Poor medical facilities and political/economic stratification of access to medical care have led to widespread dependence on “home remedies” in Georgia and the Caucasus. Medical care is often sought late, as a last resort, after exhausting the traditional folk remedies of the family and the community. To consult a physician, or especially to enter a hospital, is a sign of failure of the resources of the family. Complicating this scenario further is a general misunderstanding of the nature of cancer in Georgia. Numerous folk beliefs about cancer are held by large portions of the population. One is that cancer is universally fatal, and that a person struck by this disease has no hope of recovery.9 Another is that cancer is a contagious disease.9,10 Accordingly, in the minority of patients who are actually informed of their cancer, a great deal of mystery and secrecy develops in their lives as they try to cope with the diagnosis. These factors may have led to the patient’s wife’s belief that a diagnosis of cancer, particularly to a male head of the family, would put him at suicidal risk. In Japan, a culture with a similar tradition of not informing patients about terminal diagnoses, physicians cited the need to take into account the chance of patient suicide when
TABLE 1. SUGGESTIONS FOR DEALING CULTURAL/ETHICAL CLASHES
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1. Be aware of your own cultural background and ethical values (your "bottom-line"). 2. Do not deliberately lie to the patient or family. 3. As the patient’s physician, you should offer to make all information available to the patient first, but allow him/her to decline. 4. Use a cultural guide or professional translator if available to facilitate communication with the patient and family. 5. Accommodate all reasonable requests of the family and patient to build a trusting relationship.
TABLE 2. ASCERTAININ G PATIENT ’S DESIRE FOR DISCLOSURE 1. What do you want to know about your condition? 2. Whom should we talk to about your treatments and potential outcomes? 3. Whom do you want to know about your condition? 4. Whom do you want to make health care decisions for you?
deciding to disclose a diagnosis of cancer to a patient.11
CONCLUSION While these two cases are especially relevant for those physicians seeing patients who are Georgian or Chinese immigrants, American physicians also encounter similar situations with patients from other cultures. Gastroenterologists in Southern and Eastern Europe were much more likely not to reveal a diagnosis of cancer to their patients12 than those in northern Europe. Korean Americans and Mexican Americans are also less likely to endorse informing the patient than European Americans or African Americans.13 Arab-Americans may also have a difficult time receiving the full information of their diagnosis, because many believe that only doctors have the complex understanding necessary for making accurate decisions about their health care.14 It is not only “foreigners” who may have different ideas about these issues; it is also important to keep in mind that different subgroups within the dominant culture may respond differently to similar situations. Many African Americans are suspicious of the American medical system, because of knowledge of such experiments as the Tuskegee Syphilis Study, where African American patients went untreated as controls when effective therapy was available.15 Their concern for complete disclosure of their health situation is understandable given this historical debacle. Despite the founding presence of African American physicians, such as Benjamin Rush, American medicine is perceived as another white institution that cannot be trusted to make decisions affecting the well-being of African Americans. Each culture possesses its own unique code of
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ethics. If our patients had been seen in their countries of origin, their physicians would likely have shared the expectation that the patient not be informed and have acted accordingly. Those physicians would have been working well within their ethical boundaries. Ethics are a cultural product, reflecting important values of the culture. For example the word “autonomy” is translated into Italian as “isolation,” reflecting that culture’s belief that a patient who is fully informed of the diagnosis will be overwhelmed and isolated from her family.16 If information is given directly to a patient who is expecting to be shielded from such information, harm may be done, although this is far from the intent of the American physician who fully subscribes to the Hippocratic oath and primum non nocere. In cross-cultural medicine, the Golden Rule does not necessarily apply. Doing to others as you wish them to do to you is an ethnocentric concept and may result in a conflict with a patient from a different background. Formulation of a cross-cultural Golden Rule might be, “Do unto others as a kind person in that culture would do unto you.” What if the physician finds that the patient’s cultural norms conflict with one’s own beliefs? After all, there are cultures in which women are subject to genital mutilation. Clearly, it would not be acceptable for an American physician to participate in such a practice, though it is a cultural norm. In such instances the casuistic (case-based) approach is appropriate, recognizing that such approaches do not “solve” the negotiation process. Rather, they force the practitioner to be conscious of principles in the context of the specific case. When considering an issue regarding a patient from another culture, the physician must take a stance somewhere between moral absolutism and moral relativism. Physicians in the present cases were asked to negotiate their way through a veritable thicket of conflicting cultural values. How can a responsible physician continue to feel that she is acting ethically in the face of such a clash of expectations (Table 1)? Physicians should reexamine and reframe the concept of autonomy so that the ultimate definition of patient autonomy is to allow the patient to determine the extent of their own autonomy. An elegant way to satisfy the physician’s need to respect patient autonomy is to simply ask the patient several questions that may allow the pa-
tient to voluntarily surrender some autonomy to the family. Physicians can ask several questions to ascertain the patient’s wishes (Table 2). Ideally in the case of non-English–speaking patients, it is best to use a translator who is not a member of the family, although sometimes this may be perceived as further intrusion into the family structure. If the patient chooses personal nondisclosure and designates a family member to make decisions, the physician can feel that she is acting within ethical boundaries by respecting the patient’s right to choose. While this may cause some discomfort for the American physician, it will result in the desired outcome of building a relationship of mutual trust with the patient. Further down the road, if the patient requires more intervention or requests more information, the foundation of respect will have already been laid with both the patient and the family.
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