Uninsured, undocumented immigrants with end-stage renal disease (ESRD) who rely on hospital emergency departments for hemodialysis (HD) report substantial physical and psychological distress, according to researchers of a new interview-based study.

Lilia Cervantes, MD, of Denver Health in Denver, Colorado, and colleagues interviewed 20 Spanish-speaking undocumented immigrants attending a safety-net hospital in Colorado, a state that only covers emergent HD. The patients, all Latinos, were legally ineligible for standard scheduled HD and presented to the emergency room quite ill in the hope of receiving HD.

“Sometimes I come in almost drowning… I had to go to the intensive care unit because I couldn’t breathe,” according to a patient testimonial included in a paper published online ahead of print in JAMA Internal Medicine.

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Another patient said, “I don’t want anyone to resuscitate me if my heart or lungs stop. It’s not that I don’t want to live, but sometimes the symptoms make one feel that one would be better off dead than alive.”

Patients described the fear of being turned away from the emergency room, the dangerous practice of consuming potassium-rich foods to reach critical illness requirements, and distressing symptoms, such as shortness of breath and fluid in the chest. They often missed work, feared imminent death, and reported family distress. Despite their burden, patients expressed appreciation for health care professionals who offered kindness and empathy, according to Dr Cervantes and colleagues.

Health care access for the estimated 6480 undocumented immigrants with ESRD currently residing in the United States varies by state. A handful of states cover some outpatient HD via Medicaid emergency services, including Arizona, Delaware, Florida, Illinois, Massachusetts, Minnesota, New York, North Carolina, Virginia, Washington, and the District of Columbia, the researchers noted.

“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,” Dr Cervantes and colleagues wrote. “Comparing the experiences of different states and localities may aid in identifying more humane and higher-value solutions.”

A second study by Nathan A. Gray, MD, of Duke University School of Medicine in Durham, North Carolina, and colleagues, also published online ahead of print in JAMA Internal Medicine, found that nearly a third of 179 hospices surveyed did not admit undocumented immigrants or restricted their numbers. Nearly a quarter of patient referrals to hospices were not accepted. For-profit and smaller hospices were more likely to restrict access.

In an accompanying editorial, Alicia Fernández, MD, and Rudolph A. Rodriguez, MD, stated that working undocumented immigrants contribute significantly to the US economy. They also acknowledged the current landscape, which includes policy differences between states and the Affordable Care Act. “It is distressing that some undocumented immigrants with treatable major illnesses, like ESRD, are unable to receive standard treatment or appropriate palliative and hospice care to address their pain and suffering,” they wrote.

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1. Cervantes L, Fischer S, Berlinger N, et al. The Illness Experience of Undocumented Immigrants With End-stage Renal Disease. JAMA Intern Med. February 6, 2017. doi:10.1001/jamainternmed.2016.8865 [Epub ahead of print]

2. Illness Experience of Undocumented Immigrants with End Stage Renal Disease. February 6, 2017. JAMA. [press release]

3. Fernández A and Rodriguez RA. Undocumented Immigrants and Access to Health Care. . JAMA Intern Med. February 6, 2017. doi:10.1001/jamainternmed.2016.9209 [Epub ahead of print]

4. Gray NA, Boucher NA, Kuchibhatla M, et al. Hospice Access for Undocumented Immigrants. JAMA Intern Med. February 6, 2017. doi:10.1001/jamainternmed.2016.8870 [Epub ahead of print]