Gaps in Specialty Care Undercut Navajo Health

Photo by Graham Ramsay Ellen Rothman

Marino sat bolt upright on the gurney. His dark eyes were sunken in the bony orbits of his deeply chiseled face. His muscles heaved with each breath, and his glistening, sweaty, skin hung in folds off his gaunt frame.

Marino had an unidentifiable, progressive lung disease. It resembled cystic fibrosis, and we treated it using some of the same therapies, but no genetic test ever identified it as such. His older sister had the same respiratory problems, although her lung disease has progressed much less dramatically. They are not Navajo, but Pueblo. They came to our area many years before my husband and I arrived at our Indian Health Service clinic on the Navajo Reservation. His sister, Anna, came for love, and Marino was sent to live with her and her new husband as a troubled teen. He also married a Navajo, and they had two children.

Long Road to the Hospital
It was clear that he would need admission to the hospital and more than likely that he would require ventilator assistance yet again. In Marino’s long struggle with lung disease, no pulmonologist had ever taken primary responsibility for his care. Our outpost clinic has no inpatient facility, so I began the search for a hospital willing to take on his care. I called the hospital where he had been admitted most recently, but the on-call pulmonologist didn’t remember Marino, and their hospital beds were full anyway. Finally, I sent him to a hospital in Utah, more than a 10-hour drive from his home on the rez.

Poverty, geographic isolation, lack of education, and occasionally racism thwart access to effective specialty care.

Marino remained in the hospital for nearly four weeks. He was on the ventilator for two, and it took another two weeks for him to wean down to an amount of oxygen that a portable tank can supply. In his discharge summary that arrived a few weeks later, I read, “At this time, we would recommend testing for alpha-antitrypsin antibody, genetics for cystic fibrosis, and AFB testing x 3 to rule out tuberculosis. We will consider evaluation for potential lung transplant.”

These were recommendations for the most basic initial investigation of lung disease. He had had all of these tests. Marino had seen every pulmonologist in the Four Corners area. Yet none had coordinated his care.

This was a dramatic contrast to the care patients with cystic fibrosis in Boston receive. When I worked with the CF team at Children’s Hospital, they knew intimately every detail of each patient’s medical and personal history. They prescribed carefully tailored antibiotic regimens at the first hint of declining lung function.

Poverty, geographic isolation, lack of education, and occasionally racism thwart access to effective specialty care. Sometimes our patients add to these barriers. They frequently miss important consultations. They may not perceive them as important priorities, or they may mistrust Western medicine altogether. After a string of missed appointments, many are discharged from the specialist’s care.

System Failure
It had been years since Marino kept an outpatient pulmonology appointment. He often skipped his local primary care visits as well, making it difficult to keep tabs on him.

Marino was home for only a few weeks before his respiratory distress became untenable again. We were able to get him back to the same critical care team in Utah. As soon as he came off the ventilator, they transferred him back to a rehabilitation facility in Phoenix. But this time there was no returning home to the rez. Marino died suddenly at the Phoenix hospital.

A few weeks later, Anna brought her daughter Natalie to the clinic for a school physical. Anna’s normally thin lips seemed to disappear into her wan face. She had been a solid, some might even say hefty, Native woman, but she appeared wasted, sagging in a body suddenly too large for her. When I confronted her, she gave a throaty, slightly breathless laugh. She was taking community college classes, she explained. She had just gotten busy and was using a bit of oxygen just to get through the long days and to help her sleep.

Natalie has the diagnosis of asthma. Years ago I suggested that we evaluate her for genetic lung disease. Anna smiled agreeably, but then it was two years before she brought her back to the clinic. On this visit, we again discussed the possibility that Natalie’s asthma could be something more serious. We registered them for an initial visit with a visiting pulmonologist at our clinic.

The specialty clinic has since come and gone. Anna and her daughter never made it there. When I asked Anna about it the next time I saw her in the ER, she told me she had just gotten busy that day. “Maybe some other time,” she said between breathing treatments.

—Ellen Rothman, HMS ’98,
practices 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.

top