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Illness experience of undocumented immigrants with end-stage renal failure

The JAMA Network Journals

A small study of undocumented immigrants with kidney failure reports that not having access to scheduled hemodialysis results in physical and psychological distress that impacts them and their families, according to a new article published online by JAMA Internal Medicine.

About 11 million undocumented immigrants live and work in the United States but they are excluded from a range of public benefits, including Medicare, federally funded Medicaid and the insurance provisions of the Affordable Care Act. Hemodialysis is a life-sustaining treatment for patients with end-stage renal disease (ESRD). An estimated 6,480 undocumented immigrants in the United States have ESRD and some states use state emergency Medicaid programs to finance scheduled hemodialysis for these patients, while in most states these patients receive only emergency hemodialysis in emergency departments reimbursed by states' emergency Medicaid programs.

Lila Cervantes, M.D., of Denver Health, Colorado, and coauthors conducted an interview study with 20 undocumented immigrants (10 women and 10 men) at a Colorado safety-net hospital from July to December in 2015.

Patients described unpredictable access to emergency-only hemodialysis, the burden of symptoms (including shortness of breath as fluid builds up in the chest), and having to consume food or beverages high in potassium outside the hospital so they could meet the criteria of critical illness. Patients also reported having to miss work, anxiety over dying because of their life-threatening illness, and distress experienced by their families. Patients expressed appreciation for their care, although it was nonstandard and suboptimal, according to the article.

Limitations of the study include its small sample size from one safety-net hospital in Colorado.

"Undocumented patients with ESRD and no access to scheduled hemodialysis describe significant physical and psychological distress that affects their families and their own ability to work. 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. Comparing the experiences of different states and localities may aid in identifying more humane and higher-value solutions," the article concludes.

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(JAMA Intern Med. Published online February 6, 2017. doi:10.1001/jamainternmed.2016.8865; available pre-embargo at the For The Media website.)

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