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Confronting a Fetal Abnormality
by Karen Peterson-Iyer
Leyla Ansari, 30, a recent immigrant from Afghanistan who is 22 weeks pregnant, is admitted to East Valley Hospital-a large, suburban, non-teaching hospital--with severe cramping. A preliminary ultrasound indicates brain abnormalities with her fetus. She is accompanied by her husband of eight years (also an immigrant) and her mother, who speaks no English and lives with the couple. Mrs. Ansari (Leyla) also speaks very little English, though she does understand some; her husband speaks English better, though somewhat haltingly. Their primary language is Dari.
Mrs. Ansari is stabilized, and further scans are conducted on the fetus. The physicians soon discern that the fetus is afflicted with a relatively severe encephalocele; its size and location make survival outside the womb extremely unlikely. The attending physician, Dr. Fox, is not previously acquainted with the patient, since any earlier prenatal care she obtained was inconsistent and not at this facility.
Dr. Fox enters Mrs. Ansari's hospital room, where she had been meeting with an Afghan female friend (who apparently also speaks English reasonably well) while waiting for news of the fetus with her husband and mother, all of whom appear agitated and anxious. Mrs. Ansari's other children (all girls, ages 2, 5, and 6) are in the outside waiting area, accompanied by an aunt. Before Dr. Fox begins to speak, Mr. Ansari, noticing a look of deep concern on the doctor's face, asserts that his wife is sick with fear and anxiety and that she herself would prefer that her husband handle any news of the situation. He requests that Dr. Fox meet separately with him first, outside of his wife's room. Moreover, it is the traditional time for Muslims to offer prayers, and, since he and his family are devout Muslims, they would prefer to do so before any difficult conversations are had with the doctor. Mrs. Ansari, obviously upset but remaining silent, makes no visible objection to her husband's wishes. The friend also is silent. Mr. Ansari repeats his request that the doctor meet separately with him.
Dr. Fox, unsure of how to proceed but not wanting to stress Mrs. Ansari further, agrees to meet the husband separately across the hall, in an empty office; but he also informs Mr. Ansari that they must talk now, for he does not have time to wait for him to complete his prayers. Mr. Ansari silently follows the doctor to the empty office, where Dr. Fox discloses the most recent scan results to Mr. Ansari. Dr. Fox recommends termination of the pregnancy. Stunned, Mr. Ansari sits in silence for several minutes.
After several moments, there is a knock on the door from Mrs. Ansari's mother. She immediately discerns from the husband's face that something is terribly wrong, and asserts (in Dari) that her daughter must not be told anything of the situation until she is in a better frame of mind. She converses for some time with Mr. Ansari, becoming increasingly agitated through the course of the conversation. Dr. Fox eventually interrupts and asks the husband to translate, which he does, relaying that Mrs. Ansari's mother insists that the medical information from the scans may be faulty, and it would be bad luck for her daughter to learn the scan results at this point. In fact, she asserts, her daughter may "lose the baby" from stress over the results. She wishes for the hospital to keep her stable and let the fetus continue to grow inside her uterus in order to see "what God intends." She herself firmly believes (though there has been no information in this regard) that this baby is the long-anticipated boy that the entire family has been hoping for, and that God would not visit such an unhappy result on such a devout family.
Mr. Ansari then turns back to Dr. Fox and insists that the doctor refrain from telling Mrs. Ansari the scan results, assuring him that he will tell his wife himself once she is emotionally ready for the news. The doctor, increasingly frustrated with the direction of the conversation, informs the husband that such a choice is not his to make. He gets up and proceeds back across the hall, where he walks in on Mrs. Ansari awkwardly performing her prayers. Dr. Fox interrupts her and asks the friend (who is still present) to help him translate his news for Mrs. Ansari. He then gently but firmly informs Mrs. Ansari of the scan results, as the friend awkwardly translates for her. Mr. Ansari has stayed across the hall, and Mrs. Ansari's mother retreats, wailing, to the waiting room. Mrs. Ansari struggles to keep her tears at bay as she listens to the doctor.
Karen Peterson-Iyer is a program specialist in health care ethics at the Markkula Center for Applied Ethics.
The cases here are fictional composites made up from the details of many different real situations.