Reflections by Karen Peterson-Iyer
Reflections by Karen Peterson-Iyer
The case of Farhad Tabrizi presents several challenging yet familiar issues vis-à-vis the provision of culturally competent care to Muslim immigrants. The patient here experiences profound communication gaps with his caregivers; his family attempts to protect him from a negative prognosis; and he has difficulty negotiating the requirements of his Muslim faith in the context of a clinical setting that is at times uncomprehending, perplexed, or even outwardly hostile towards those requirements. Mr. Tabrizi's case also includes the additional challenges associated with a frank discussion of death-something that is difficult even in the absence of cultural and language barriers.
Here we are confronted with the complexity of a patient who is, on the one hand, an autonomous individual and, on the other hand, a historically-embedded person, rooted in a concrete family, religion, and culture. While this is true of most patients, the complexity is heightened when we perceive that a patient's cultural background includes a particularly strong place for family ties and culturally based roles different from those of mainstream U.S. society. The importance Western bioethics accords to respect for individual autonomy (and decision making) does not always mesh cleanly with such communal cultural realities and expectations.
Mr. Tabrizi is of course capable of personal decision making, but it is not clear that he would choose to be the primary recipient of such a negative prognosis. There may be cultural factors at work here; in much of the Middle East, including Iran, very serious news is conveyed only gradually, and often conveyed first to select family members rather than simply to the patient him- or herself.1 Whether or not that is Mr. Tabrizi's expectation, his son appears to harbor hesitations about delivering the news to his father-hence his attempt to "editorialize" the medical diagnosis/prognosis into a gentler version for his father to hear. Writing on the difficulties of cross-cultural communication specifically with patients from Arabian cultures, Patricia AbuGharbieh argues that communicating a grave diagnosis is often viewed as cruel and tactless, since it easily deprives the patient of hope-something few family members would want to do.2 While Mr. Tabrizi is Persian (not Arabian), the point may nevertheless be instructive. Dr. Looke, like many Western-trained physicians, has a markedly direct style of communication, in this case emphasizing the relative nearness of the patient's death. Many North Americans would appreciate this approach as honest and straightforward, even respectful. Yet, from another cultural perspective, the very same candid approach can seem inappropriately blunt and insensitive, unnecessarily jarring the patient and his family into a mode marked by panic and/or hopelessness.
In spite of the communication gap, and as Abdelmalek Yamani points out in his reflection on this case, there exists a distinct possibility that Mr. Tabrizi does understand that he has cancer, having read between the lines of his son's words. But we cannot know that for certain. Mr. Tabrizi may or may not grasp the full contours of his situation, since his son has shielded him from the sharpest edges of this distressing news. For this reason, it is difficult accurately to evaluate whether Mr. Tabrizi is making an informed decision when he refuses treatment.
Again, it probably would have been best, and most respectful, for Dr. Looke to have asked Mr. Tabrizi outright whether or not he would like to learn of his medical situation directly, or via his son. The disclosure of his prognosis could have been done more gradually, by the doctor if possible or by the son (if Mr. Tabrizi designates him as an appropriate recipient of the information). Mr. Tabrizi should not be denied the chance to make sense of his own prognosis. But respect for him as a patient demands that he be respected not just as a free-floating individual but rather as a person with cultural and familial needs, someone who (like all of us) is to a certain extent autonomous but also deeply embedded in relationships, including culturally-informed relationships.
Rather than asking the son if he would be willing to translate, Dr. Looke could have asked the patient whom he would like to be the first recipient of his medical diagnosis/prognosis. To do this would have required engaging a translator other than the son himself-ideally, someone within the hospital setting, but if that were not possible, then an outside (professional) translator. If such a person could not be located, there are services available to help do this over the telephone. Engaging a professional translator would also have been helpful in communicating medical language with which the son may not have been entirely familiar. In fact, all three of the other respondents to this case-Hamza, Yamani, and Hassan/Fadel-suggest that the hospital should have utilized the services of a professional translator in various ways.
Mr. Tabrizi also faces hurdles related to the interface of his medical needs with the requirements of his Muslim faith. The dietary issues that he raises-the proscription on eating pork, for instance-are very real issues that commonly arise for Muslim patients in clinical settings. Since pork products can "hide" in many foods-gelatin, lard, sauces, etc.-Mr. Tabrizi's fears are not unrealistic. Nor is it an extraordinary expectation that the hospital should be asked to accommodate his dietary needs. The nursing staff could have been proactive here, communicating his needs to the kitchen and encouraging his son and wife to feel free to bring in outside food. This is more than simply a logistical issue; it is a moral one. This sort of effort is exactly what is needed in order to honor the values of inclusion, equity, and diversity. Moreover, one of the central bioethical values that health care providers serve is the value of beneficence-that is, actively to promote the patient's well-being. It is impossible adequately to serve a patient's well-being while ignoring central aspects of his or her needs, including dietary/religious needs.
Along similar lines, Mr. Tabrizi's fear that the recommended treatments may present hurdles to his ability to pray, visit the mosque, and interact with family and friends is also reasonable, especially given his lack of familiarity with the side effects of chemotherapy. However, since most of the standard Muslim prayer times are somewhat flexible, it would behoove Dr. Looke to address this fear directly with the patient and his family, perhaps with the help of a Muslim religious leader. Moreover, as Hassan and Fadel point out, most Americans are aware that devout Muslims pray several times per day. It would not have been particularly difficult for Dr. Looke and the hospital staff to discuss the matter with Mr. Tabrizi and help him identify ways to integrate his medical needs with his religious requirements.
Finally there exists in this case the strong possibility of an interpretative gap regarding the very negative prognosis that Dr. Looke delivers. In the United States, there has historically been an assumption, at times problematic, that a medical team should do everything possible to prolong a patient's physical life in the face of a diagnosis of this sort. Although this pattern has begun to shift over the past few decades, whether and when to discontinue life-sustaining treatments, or to withhold them at the patient's request, continue to be points of heated public debate.
Of course, it does not make sense to speak of Mr. Tabrizi's treatment in these terms; his disease is still at a (relatively) early stage. Nevertheless, some patients-and perhaps Mr. Tabrizi is among them-would, under these circumstances, elect not to undergo chemotherapy treatments because of potentially severe side effects. This would be a rational choice, even if not a choice that all patients would make. Moreover, it is a choice that is deeply intertwined with personal, cultural, and religious norms and values. Islam affirms the sanctity of human life and the necessity of seeking medical treatment; but it also affirms that treatments holding no promise cease to be mandatory.3
The underlying point here is that these decisions and values may not be similarly assumed in all cultures or by all patients. In the case of some patients, including some Muslim patients, countervailing beliefs about the will and reason of God may lead to alternative approaches to end-of-life care. Minimally, Mr. Tabrizi's health care team should open itself to the possibility that a refusal of treatment might in fact be a rational decision, given his own value system. It is of course debatable whether or not Mr. Tabrizi should at this point be counted as a "dying" patient. Nevertheless, once the health care team has done what it can accurately to communicate the prognosis to Mr. Tabrizi (even if that involves communicating it at a more gradual pace than usual, and via the son rather than the patient himself); and once Dr. Looke has done everything he can to address Mr. Tabrizi's fears about the treatments themselves; and once the health care team has worked to make Mr. Tabrizi as comfortable as possible in the hospital setting, given his dietary and other religious needs-it must then step back and accept the possibility that the patient may refuse the recommended treatment. This is of course true for any patient. However, sorting out a patient's "autonomous" choice becomes markedly more difficult in the face of culturally diverse communication styles, practices, and expectations.
1Juliene G. Lipson and Homeyra Hafizi, "Iranians," Transcultural Health Care: A Culturally Competent Approach, ed. Larry D. Purnell and Betty J. Paulanka (Philadelphia: F.A. Davis Company, 1998): 330.
2Patricia AbuGharbieh, "Arab-Americans," Transcultural Health Care: A Culturally Competent Approach, ed. Larry D. Purnell and Betty J. Paulanka (Philadelphia: F.A. Davis Company, 1998): 155.
3Hassan Hathout, Reading the Muslim Mind (Burr Ridge, IL: American Trust Publications, 1995), 135.