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Original Investigation
April 2017

The Illness Experience of Undocumented Immigrants With End-stage Renal Disease

Author Affiliations
  • 1Division of Hospital Medicine, Department of Medicine, Denver Health, Denver, Colorado
  • 2Department of Medicine, Denver Health, Denver, Colorado
  • 3Division of General Internal Medicine, University of Colorado, Denver
  • 4Research Department, The Hastings Center, Garrison, New York
  • 5Division of Nephrology, Denver Health, Denver, Colorado
  • 6Graduate School of Social Work, University of Denver, Denver, Colorado
JAMA Intern Med. 2017;177(4):529-535. doi:10.1001/jamainternmed.2016.8865
Key Points

Question  What is the illness experience of undocumented immigrants with end-stage renal disease and no access to scheduled thrice-weekly hemodialysis?

Findings  In this qualitative study of 20 undocumented immigrants with kidney failure, patients described substantial physical and psychosocial distress related to emergent-only hemodialysis care.

Meaning  States should reconsider policies on access to routine maintenance hemodialysis for undocumented immigrants given the symptom burden and cost.

Abstract

Importance  The exclusion of undocumented immigrants from Medicare coverage for hemodialysis based on a diagnosis of end-stage renal disease (ESRD) requires physicians in some states to manage chronic illness in this population using emergent-only hemodialysis. Emergent-only dialysis is expensive and burdensome for patients.

Objective  To understand the illness experience of undocumented immigrants with ESRD who lack access to scheduled hemodialysis.

Design, Setting, and Participants  A qualitative, semistructured, interview study was conducted in a Colorado safety-net hospital from July 1 to December 31, 2015, with 20 undocumented immigrants (hereinafter referred to as undocumented patients) with ESRD and no access to scheduled hemodialysis. Demographic information was collected from the participants’ medical records. The interviews were audiorecorded, translated, and then transcribed verbatim. The interviews were analyzed using inductive qualitative theme analysis by 4 research team members from March 1 to June 30, 2016.

Main Outcomes and Measures  Themes and subthemes from semistructured interviews.

Results  All 20 undocumented patients included in the study (10 men and 10 women; mean [SD] age, 51.4 [13.8] years) had been in the United States for at least 5 years preceding their diagnosis with ESRD. They described the following 4 main themes: (1) a distressing symptom burden and unpredictable access to emergent-only hemodialysis, (2) death anxiety associated with weekly episodes of life-threatening illness, (3) family and social consequences of accommodating emergent-only hemodialysis, and (4) perceptions of the health care system.

Conclusions and Relevance  Undocumented patients with ESRD experience debilitating, potentially life-threatening physical symptoms and psychosocial distress resulting from emergent-only hemodialysis. States excluding undocumented immigrants with ESRD from scheduled dialysis should reconsider their policies.

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