High Distress among Undocumented Immigrants with ESRD

Undocumented immigrants with end-stage renal disease (ESRD) suffer from serious physical symptoms and psychosocial distress—particularly related to receiving hemodialysis on an “emergent-only” basis, reports a qualitative study in JAMA Internal Medicine.

The investigators performed semi-structured interviews with 20 undocumented Latino patients with ESRD seen at a safety-net hospital in Colorado. The patients were 10 men and 10 women, mean age 51 years. All had been in the United States for at least 5 years before ESRD diagnosis.

Analysis of interviews identified themes in four major categories. Patients experienced a gradual and distressing increase in symptoms after emergency hemodialysis, identifying dyspnea as the most burdensome symptom. Because of high patient volume and inconsistent admission criteria, they had uncertain access even to emergent hemodialysis. To avoid being turned away at the hospital, some patients reported waiting until symptoms were severe enough to put them at risk of death.

The patients experienced high anxiety about their risk of death as symptoms accumulated. They described comforting relationships with other patients and suffered distress when those people died. They discussed the impact of emergent-only hemodialysis on their families, and the importance of family caregivers.

Patients understood that they were receiving suboptimal care owing to their undocumented immigration status, the investigators said. Many had a willing donor, but lacked access to transplantation. Participants said they appreciated the kindness and empathy of providers at the safety-net hospital.

The findings highlight the high symptom burden experienced by undocumented immigrants with ESRD who lack access to scheduled hemodialysis.

“This distress, coupled with higher costs for emergent dialysis, indicate that we should reconsider our professional and societal approach to ESRD care for undocumented patients,” the researchers said [Cervantes L, et al. The illness experience of undocumented immigrants with end-stage renal disease. JAMA Intern Med. Published online February 6, 2017. doi:10.1001/jamainternmed.2016.8865].