Markkula Center of Applied Ethics

Confronting a Fetal Abnormality: Reflections by Karen Peterson-Iyer

One of the most troubling questions that arises in this case has to do with information sharing and how the health care team communicates sensitively and effectively with the patient. Traditional Western bioethics and law upholds the practice of communicating medical information directly to the patient. Moreover, an increasing emphasis since the 1970s on patient autonomy-partly to counter the paternalistic practices that had come to mark doctor-patient interactions before that time-has meant that patient privacy (of information) is now considered a paramount value in clinical encounters. Hence, for a physician to communicate test results to anyone but the patient him- or herself would be an ethical violation. Similarly, it is the patient-not the husband or parent or any other family member-who is the decision maker vis-à-vis any procedures which the health care team advises.

This practice works well in a culture that emphasizes the patient first and foremost as an autonomous individual. It does not work as well when the patient is seen, and sees herself, as one part of a family and cultural system where it is not part of her role to be the primary recipient of all information (including negative information) or to communicate decisions. In many (albeit not all) Middle Eastern families, family interdependence constitutes identity in a far more central way than it does in most subcultures of the modern United States. While no culture is monolithic, cultural tradition must be taken into account when we reason how best to nuance ethical norms appropriately in different situations.

It would be a mistake to deprive Mrs. Ansari of the respect for autonomy that Western bioethics traditionally calls for and upholds. But it also would be a mistake to use adherence to this (or any) norm as a bioethical stick with which to banish any non-U.S. practices or beliefs from the moral landscapes we encounter in cross-cultural clinical settings. Whatever action is taken in this case needs to find an appropriate means of honoring Mrs. Ansari as both an individual and as a product of her family and cultural environment. In other words, respecting her autonomy must be done in a way that also respects her relationality and her cultural, familial, and historical embeddedness.

One possible approach to this issue would be to accommodate the cultural expectation that the information should be communicated first to Mrs. Ansari's husband, and perhaps her mother as well. This may indeed be the expectation held by Mrs. Ansari (Leyla) herself; but we do not know that for sure. Personal identity is always a complex mixture of traits; and, while culture is an important part of individual identity, an individual should also never be understood as simply a product of his or her culture. Thus, it is possible that Leyla Ansari herself is uncomfortable with the cultural and familial expectation that she will be protected from knowing her fetus' diagnosis.

The best way to find this information out would be to ask her, in as culturally appropriate a manner as possible, how much she wishes to be involved in the information sharing and decision making attendant to her medical situation. This is in fact the approach taken by Doha Raik Hamza, in her analysis of the case. Does Mrs. Ansari wish to communicate directly with her doctor, to leave such communication to her husband and/or mother, or to take some other approach? Perhaps a female doctor, nurse, chaplain, or social worker-preferably one with some connection to Afghan culture or at least to Muslim belief systems-could be recruited to help with such a conversation. This approach would manifest respect for the patient's autonomous choice while still honoring the specific forms of relation that characterize her cultural and religious background. In other words, forcing Mrs. Ansari into the role of individual decision maker (as Dr. Fox essentially does) would not demonstrate the respect for her personhood that in fact underlies the Western directive to respect autonomy; yet automatically disallowing her the opportunity to make such a (counter-cultural) choice may also disrespect her individual personhood. The attempt to have a culturally sensitive conversation with Mrs. Ansari may be the best way to serve the value of autonomy while not insisting on a thoroughly individualistic interpretation of it. While ultimately the decision would then rest with her, she would be treated as a relational, culturally embedded person, not as an ahistorical individual.

In addition to questions about how and when to communicate information with Mrs. Ansari, Dr. Fox faces the challenge of how to accommodate-or refuse to accommodate-religious and cultural practices which he finds unusual. For instance, as practicing Muslims, Mrs. Ansari and her family find it important and comforting to keep the regular Muslim prayer rituals, praying at five specific times per day. Dr. Fox should have allowed his patient (and her family) the time and space necessary for this practice, both out of respect for her and out of a recognition that spiritual practice is considered by many to be an integral part of healing and recovery. Hence, it is incumbent on the doctor and, indeed, on the entire health care team, to respect and facilitate Mrs. Ansari's desire to pray. As several of the other case respondents make clear, this would be a relatively easy accommodation for the health care team to make. Ideally, the health care team might have contacted a local imam or other Muslim spiritual care provider to help Mrs. Ansari integrate her Muslim beliefs with the choices she and her family face, vis-à-vis the fetus.

Dr. Fox's unwillingness to allow Mrs. Ansari and her family the time necessary to pray was driven by the strict hospital schedule and sense of priorities in a U.S. medical setting. These values are part of the medical culture which Dr. Fox brings to the situation. Thus, the cultural disconnect which occurs here is not simply between Muslim or Afghan practices and U.S. practices; it is between the patient's culture and the clinical culture of the hospital setting. Dr. Fox and the rest of the health care team would certainly benefit from a greater awareness that this "doctor culture" includes assumptions (for instance, regarding time and physician availability) that may be efficient or expedient but are not always in the patient's best interest.

In a related vein, Dr. Fox is challenged by the need to relate to Mrs. Ansari and her family in a way that they do not find overly blunt or otherwise offensive. An open discussion of such a grave diagnosis, with little effort given to first establishing rapport and trust, likely came across as tactless or even cruel. Dr. Fox, who probably felt that his honesty demonstrated a basic level of respect for his patient and her family, may not have realized that his straightforwardness potentially suggested to the family an inappropriate lack of hope. Certainly when the doctor became frustrated and increasingly confrontational, bursting into Mrs. Ansari's room and interrupting her prayers, his style substantially escalated an already difficult situation.

As Abdulmalek Yamani points out in his response to the case, Dr. Fox should have slowed down and taken the time to think about the cultural needs of his patient. While he cannot be expected to know every detail of every cultural background he encounters in patients, he might have guessed (from Mrs. Ansari's behavior and from her husband's requests) that unannounced, direct, and difficult conversation with her would add to her stress. Small accommodations, such as avoiding direct eye contact or touch, or taking a few minutes for "small talk" before having more serious discussions with her (or with her husband) would likely have gone a long way towards bridging the cultural gaps. Here, the classic virtues of temperance and wisdom would have served Dr. Fox well, rather than a single-minded focus on respect for individual autonomy.

Finally, there is the concrete question of termination of the pregnancy itself. The sanctity of human life is a strongly held value in Muslim thought. Muslim scholars generally maintain that biological life begins at conception, but human life begins when "ensoulment" takes place (either 40 or 120 days after fertilization, according to different schools of thought). After this time, abortion is strongly discouraged or even forbidden except to save the mother's life or, in some cases, health. According to the Islamic Medical Association of North America, "fetal congenital malformations in which abortion can be sought and is permitted are lethal malformations not compatible with extra uterine life…. But even in these situations it is preferable to do it before the 120th day after fertilization or 19 weeks of gestation." Hence, since Mrs. Ansari here is 22 weeks pregnant, the decision of whether or not to terminate the pregnancy would depend heavily on the medical opinion of whether or not a continued pregnancy would seriously endanger the health (or life) of Mrs. Ansari. Dr. Fox should have educated himself about how his own recommendation fit into this larger picture, either by consulting with a Muslim medical colleague or by bringing a Muslim religious leader into the conversation. Minimally, he could have couched his own recommendation (i.e. to abort) in terms of the relative danger to Mrs. Ansari.

Each of these issues, taken by itself, presents a hurdle in the provision of culturally competent (and indeed effective) health care for Leyla Ansari. Taken together, however, they combine to create an explosive situation for both the Ansari family and the health care team alike. In particular, the well-meaning doctor's apparent assumptions-regarding what it means to respect patient autonomy and to attend to patient wellbeing-needed some revising, based on the concrete patient that was before him. This sort of increased awareness of cultural bias and expectations would have altered this situation substantially, so that Mrs. Ansari could have received the culturally competent health care she deserved.

Return to the case
Introduction to Culturally Competent Care
Introduction to Culturally Competent Care for Muslim Patients

Karen Peterson-Iyer is a program specialist in health care ethics at the Markkula Center for Applied Ethics.

January 2008