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



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



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.



Themes and subthemes from semistructured interviews.



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.



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.
Division of Hospital Medicine, Department of Medicine, Denver Health, Denver, Colorado2Department of Medicine, Denver Health, Denver, Colorado.
Lilia
L
Cervantes
Division of General Internal Medicine, University of Colorado, Denver.
Stacy
S
Fischer
Research Department, The Hastings Center, Garrison, New York.
Nancy
N
Berlinger
Department of Medicine, Denver Health, Denver, Colorado.
Maria
M
Zabalaga
Department of Medicine, Denver Health, Denver, Colorado.
Claudia
C
Camacho
Department of Medicine, Denver Health, Denver, Colorado5Division of Nephrology, Denver Health, Denver, Colorado.
Stuart
S
Linas
Graduate School of Social Work, University of Denver, Denver, Colorado.
Debora
D
Ortega
D000328:Adult; D017281:Cost of Illness; D003710:Demography; D004632:Emergency Medical Services / Q000379:methods / Q000706:statistics & numerical data; D005260:Female; D006297:Health Services Accessibility / Q000592:standards; D006801:Humans; D007676:Kidney Failure, Chronic / Q000191:economics / Q000453:epidemiology / Q000523:psychology / Q000628:therapy; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D011584:Psychology; D036301:Qualitative Research; D006435:Renal Dialysis / Q000379:methods / Q000706:statistics & numerical data; D000069756:Undocumented Immigrants / Q000523:psychology / Q000706:statistics & numerical data; D014481:United States / Q000453:epidemiology