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Escape from the Stereotype Trap
Escape from the Stereotype Trap
 Ellen Rothman Photo by Graham Ramsey |
Our patients often present to the clinic with advanced disease at their first visit. Some Navajos remain skeptical of Western medicine and mistrustful of government-sponsored health care. Others just have difficulty finding a ride to the clinic. But even compared to what we are used to diagnosing on the rez, last spring, we had a very unusual week. In the space of two days, we evaluated two different children with minimal prior medical care who turned out to require an immediate transplant for survival.
A Child's Weak Heart
The cardiologist was quite impressed by Leonard's case. Leonard had never been seen in our clinic before this illness. His family moved frequently within the vast Navajo Reservation, and as a result, he had received only sporadic care from a variety of small clinics. He came to ours complaining of a prolonged cough. We did an X-ray to rule out pneumonia and instead discovered a markedly enlarged, globular heart with evidence of significant fluid build-up in the lungs, a sign that his heart was not pumping adequately.
| In the space of two days, we evaluated two different children with minimal prior medical care who turned out to require an immediate transplant for survival. |
"This is the most severe case I've ever seen," the cardiologist told me over the phone. His prediction was grim. Without a heart transplant, he believed that Leonard would live only months, or at most one year.
Because he thought that patients from the reservation were generally not good transplant candidates, however, he planned to discharge Leonard back to the reservation for a traditional healing ceremony the following day.
Initially, I thought that the cardiologist was skeptical of transplanting Navajos for medical reasons. Well-matched transplant organs can be difficult to obtain for Native Americans, as they are for other minority groups. But as the cardiologist and I discussed the issue further, it became clear that his primary concerns were social. He felt that Navajos living on the reservation were not reliable enough to remain in close contact during the waiting period, to be compliant with the immunosuppression medication afterwards, and to return for all follow-up visits.
Despite great strides in tolerance of cultural plurality in this country, I find that it is still commonplace to stereotype Native Americans, especially those living on reservations. Their isolation and reluctance to assimilate into general American culture seem to make these assumptions more acceptable.
Transplantation Trek
Janelle, a six-month-old, was brought to my husband's general pediatric clinic by her mother for her first routine visit. At nearly six months of age, she was long overdue for her first set of vaccinations. After one look at her yellow eyes, jaundiced skin, and protuberant belly, Carlos immediately suspected liver failure. He transferred her to me in the emergency department, where her lab results documented severe liver disease. I transferred her to Phoenix for further care.In Phoenix, the pediatric specialists were unable to find a cause for her condition, although it was becoming increasingly obvious that she would die quickly without a transplant. Once again, the specialist said to me that he generally didn't recommend transplantation for children from the reservation, for reasons similar to those the cardiologist had given. "Besides, her parents don't seem interested. In fact, they never seem to have much of anything to say," he said. Janelle's case would be especially complicated because the closest center performing pediatric liver transplants is in Minnesota.
Leonard was discharged the following day on a low-dose diuretic to lessen the workload for his weakened heart. Fortunately, by sheer luck, the cardiologist would be in our town the following week for one of his scheduled clinics. I decided to make my stand then, to ensure that his stereotypes about Navajos did not interfere with Leonard's access to the best available treatments. I invited one of our more traditional Navajo clinical staff members to be present with the cardiologist and me as we discussed transplantation. We spent nearly two hours with the family, and at the end, they smiled and said that if it was the only option to save their son, they would go through with the transplant. We set up an initial evaluation in Phoenix with the transplant team two weeks later.
Three weeks later, I got a call from the transplant team asking if I could locate Leonard. He had neither shown up at his evaluation, nor called to cancel or reschedule. Since his family had no phone, I had to send one of our public health nurses out to the home. "The parents think Leonard is better. They do not want a transplant now, but maybe in the future," the nurse reported. After no-showing for the transplant team and being impossible for them to reach, Leonard's parents had almost certainly blown the chance for their son to have a transplant.
Janelle received a new liver in Minnesota just a few weeks ago. While Leonard turned out not to be an appropriate transplant candidate for all the reasons the cardiologist had suggested, Janelle surprised us all.
--Ellen Rothman, HMS '98, now practicing in northern Arizona on the Navajo Reservation
The opinions expressed in this column are not necessarily those of Harvard Medical School, its affiliated institutions, or Harvard University.