Strategies for Culturally Effective End-of-Life Care

Providing good end-of-life care may be complicated by disagreements between physicians and patients, difficult interactions, or patient actions and decisions that the physician does not understand. In some cases, challenges may result from cultural differences between the patient's background and traditional medical practice. Values and social expectations that are so ingrained in physicians as to be unquestioned may be alien to patients from different cultural backgrounds. Physicians need to be sensitive to cultural differences and to develop the skills necessary to clarify and resolve end-of-life care involving patients from different cultures. We describe two cases that illustrate how cultural differences may affect specific aspects of end-of-life care. Case Descriptions Case 1. Advance Directives in a Patient with Congestive Heart Failure Wilma Martinez, a 67-year-old Spanish-speaking woman, has congestive heart failure due to inoperable coronary artery disease. She has been hospitalized three times during the past 6 months, even though she has reliably taken five medications daily. Her ejection fraction is 25%. She seems distressed when her physician discusses advance directives and encourages her to designate a health care proxy. She says she wants everything done to help her survive. The patient's daughter usually accompanies her to clinic appointments and serves as translator. A few months after the discussion about advance directives, the physician asks more specifically about Mrs. Martinez's preferences for end-of-life care. This time, Mrs. Martinez's daughter expresses a strong desire that her mother not receive mechanical ventilation or cardiopulmonary resuscitation. It is unclear whether this represents a change in the patient's preferences or the daughter's wishes. Case 2. Insistence on Life-Sustaining Interventions by a Patient with Metastatic Cancer Lawrence Byrd, a 59-year-old African-American man, has metastatic colon cancer. He had surgery for Dukes stage D adenocarcinoma of the colon and adjuvant chemotherapy with 5-fluorouracil and leucovorin. Four months ago, he developed liver metastases and did not respond to two cycles of chemotherapy. At his last visit, the patient declined to discuss hospice when his physician raised this option. He has a living will indicating his desire for aggressive treatment if artificial means are required to sustain his life. The physician suspects that the patient's insistence on aggressive care may stem from his failure to understand the limits of available interventions. The physicians in these cases were perplexed by their patients' seemingly inconsistent or unreasonable actions and decisions. In typical cases, physicians have little information about the patient's cultural and social background even though these characteristics shape end-of-life preferences. In this discussion, we argue that quality end-of-life care requires attention to cultural differences. Only through knowing the cultural background can clinicians make sense of a patient's explanatory models about illness, expectations about care, hopes for the future, and views regarding death (1). Building on many useful general articles on cross-cultural care and the culture of medicine (1-9), we focus on end-of-life care. Attention to cultural differences is particularly important because demographic changes increase the likelihood that U.S. physicians will care for patients from cultural backgrounds other than their own (10). Strategies for Cross-Cultural End-of-Life Care We revisit the cases introduced earlier to more fully describe the patients' cultural backgrounds and the impact of cultural differences on their care. The cases are composites, drawn from research or clinical experience. All names used are pseudonyms. Case 1 raises important issues about communication across cultural differences and misunderstandings over such basic issues as the role of the patient in decision making. Case 2 raises issues of patient mistrust with deep roots in cultural history and personal experiences. Case 1. Wilma Martinez is a 67-year-old immigrant from El Salvador who moved to the United States to live with her daughter. Mrs. Martinez speaks only Spanish. Through her daughter's translations, the patient appears to comprehend details of her illness and treatment. When asked if she understands what the doctor is saying, she invariably nods affirmatively. During a clinic visit when the patient's daughter is not present, the physician arranges for a trained medical interpreter to be present. When the physician discusses end-of-life preferences, the interpreter reports that Mrs. Martinez thought that ventilatory support and cardiopulmonary resuscitation would hasten her death. Later, the interpreter explains that Mrs. Martinez could not understand why staff were insistent that she, rather than her daughter, make decisions. Mrs. Martinez stated, In my country, the family decides. Assuming that her daughter would make decisions for her, she saw no reason to sign forms. She worried that signing forms would cause legal problems because of her immigration status. The interpreter also suggests that Mrs. Martinez's nodding indicates politeness and respect for the physician, not assent. The physician arranges for a trained interpreter to be present at subsequent clinic visits. By probingfor example, asking, Tell me what you believe is going on in your illnessthe physician ascertains that Mrs. Martinez does not expect to survive her illness. By asking, How would you like decisions to be made about your medical care? the physician confirms that Mrs. Martinez wants her daughter to make decisions for her. Rather than assuming that Mrs. Martinez's nods signify assent, the physician asks her specifically whether she has any questions or disagreement with the care plans. Case 1 illustrates how the emphasis on patient autonomy and informed consent that is common in U.S. health care and bioethics is alien to many. Among some cultural traditions, disclosure of a serious diagnosis and decisions about treatment are sometimes made through discussions with family members, not the patient (11, 12). The cultural belief is that families should spare patients the suffering that accompanies the responsibility of decision making (13). The ethical principle of respect for patients does not require physicians to insist that patients make decisions about their care (14). The physician should offer competent patients the opportunity to make these choices but accept preferences to have someone else make decisions for them. The patient's wishes may guide decisions, but the patient may want family to assess the benefits and burdens of interventions. Mrs. Martinez's case also raises issues about communication. Behaviors such as nodding one's head may have different meanings in various cultures. Particularly when discussions with the patient are not smooth, physicians need to consider whether they are misinterpreting nonverbal cues. Rather than indicating agreement, Mrs. Martinez's nod might be merely a social custom, showing politeness and respect for a person in authority (15). Recognizing this possibility, the physician asked specific questions that required the patient to express her wishes. Language differences, even those that exist within the provider's own language (for example, black vernacular English or other dialects), should signal the need to seek clarity (4). Trained medical interpreters can ensure effective, efficient, and reliable communication between providers and patients (16). Physicians need to bear in mind that interpreters may themselves influence the content of messages conveyed during translations (17). When professional interpreters are unavailable, physicians may need to use family members or bilingual health care workers for translation. Family or untrained interpreters may, however, misinterpret medical phrases, censor sensitive or taboo topics, or filter and summarize discussions rather than translating them completely (17, 18). In case 1, Mrs. Martinez's daughter may not have translated information about mechanical ventilation and cardiopulmonary resuscitation accurately or may have been reluctant to tell the doctor that her mother did not understand or that the doctor's words were unclear. Case 2. Communication between Lawrence Byrd, an African American, and his physician, a European American, has been difficult. In an effort to improve their relationship, the physician suggests using first names. Mr. Byrd does not use the doctor's first name, although the physician calls him Lawrence. The doctor says, Lawrence, I am worried about what happens when we reach the point where these interventions you are asking for would be costly and serve only to prolong your suffering. Mr. Byrd angrily demands that he receive every medical test and procedure you've gotregardless of the cost. The physician asks for advice from an African-American colleague, who suggests that the physician's well-meaning behavior might have seemed disrespectful. Calling an older African-American man by his first name is impolite. African-American persons who have suffered discrimination may fear neglect if they do not insist on maximal care. Many patients seek aggressive treatment because they value the sanctity of life, not because they misunderstand the limits of technology. Mr. Byrd may have perceived discussions of costs and the ineffectiveness of treatment as a devaluation of his life. At the next visit, the physician asks Mr. Byrd whether he has experienced disrespect or racism: Mr. Byrd, it is important for me to know if you have ever felt unfairly treated by me or anyone else involved in your care. Mr. Byrd relates incidents when his requests for pain medication went unanswered. The physician responds apologetically, I am truly sorry if I have failed to communicate clearly in the past; I never intended to be disrespectful. The physician addre