The community health nurse rushed Drueh back into my clinic room. “He’s had a spell, a terrible one,” she said breathlessly. Drueh’s mother and father followed slowly behind, pushing the portable oxygen tank. The child’s lips were dusky, and the oximeter flashed urgently, registering an oxygen level that was dangerously low. But within a few minutes, with a bit of stimulation, he started breathing again, and his oxygen level recovered to a normal range. In contrast to the nurse, his parents seemed unconcerned. When I asked if this happened at home, his father nodded while his mother studied the floor.
I had first learned about Drueh just a week prior to that visit. His hospital had contacted our social worker to arrange for home supplies to be ready within two days for his anticipated discharge. In the more than five years I have been a pediatrician for the Indian Health Service, I have learned many times over that city physicians are often unaware of the challenges faced by children with complex medical needs when they return to the reservation.
Drueh had been born with a rare genetic defect that had profound consequences—mental retardation, kidney defects, heart defects, seizures. I called his physician in Phoenix, and as we discussed his issues, it became clear that there was more investigation to be done. Though local children could easily go in to the city for tests and appointments, it would be extremely difficult for us to coordinate care from more than 300 miles away.
The physician in charge was thoughtful about Drueh’s care and receptive to my concerns. Together we decided that he would stay in the hospital until the remaining studies were completed. We agreed that he should be discharged early in the week to make sure that the maximum services were available when he returned home. We planned to send Drueh first to a community hospital on the reservation for a few days so he could readjust to our high altitude and we could make sure that all the home equipment was in place.
Needless to say, I was unpleasantly surprised to learn that Drueh had been discharged from the hospital that Saturday, only two days after I had spoken with his physician. He had no appointments set up, and although the supplies had been ordered, our social worker was not sure if any equipment had even been delivered. We immediately dispatched a nurse to visit the family at home, and she reported back that she had serious concerns. The parents were young, the house inadequately supplied.
I was indignant when I called the NICU that afternoon to find out what had happened. I learned that a new attending physician had told the family that Drueh’s prognosis was grim. He would be profoundly retarded, and his life expectancy was limited—perhaps a few weeks or a few years. When the family received this news, the grandmother requested that Drueh be discharged so that they could take him for a ceremony by a medicine man on the reservation. He was discharged just hours later.
The Mask of Tolerance
Those of us working with native tribes have inherited a history fraught with centuries of conflict and deceit. The first Anglo doctors, convinced of Western superiority, tried to banish traditional healers. Nowadays, many of us pride ourselves on being culturally sensitive, open to alternative beliefs and healing traditions.
Yet, in some instances, the pretense of cultural tolerance masks insensitivity. In Drueh’s case, under the guise of supporting the family’s cultural beliefs, the physicians discharged him hastily, with insufficient preparation. Consequently, the boy came home to a family and a community ill-prepared to deal with his daily care. The physicians saw a child likely to die with or without the benefits of Western medicine. But how did this decision benefit the child or the family? Drueh was a hopeless case to the medical establishment—unfixable and destined to die young. Immediate discharge for traditional healing provided an easy out—laudable in the name of cultural sensitivity and unlikely to alter the ultimate medical outcome.
In my clinic that afternoon, Drueh lay alone on the exam table. He looked obviously abnormal—a thin mouth far too wide for his face, low-set ears cocked at a disconcerting angle, slanting eyes, clenched hands. The monitor to detect pauses in his breathing was different from the one his parents were taught to use in the hospital. Frustrated by frequent alarms that they couldn’t interpret, they had elected to shut it off.
Drueh had a second dramatic pause in his breathing during that office visit. I called the intensive care unit to confirm that these spells were unchanged from what he experienced while still in the hospital. I warned the family that these could be life-threatening events and offered readmission. The family was expecting the medicine man that evening and chose to defer. The nurse was concerned that I had sent them home again, but it was difficult to strongly urge readmission for the same symptoms the child had had at the time of discharge.
Drueh died at home later that week. His family left two urgent messages requesting the community nurse to contact them. A few hours later, there was an EMS call to their home. By the time the ambulance arrived, Drueh was gone.
Ellen Rothman, HMS ’98, practices in northern Arizona on the Navajo Reservation.
The names used in this column are pseudonyms, and the opinions expressed are not necessarily those of Harvard Medical School, its affiliated institutions, or Harvard University.