• JAMA internal medicine · Apr 2017

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

    • Lilia Cervantes, Stacy Fischer, Nancy Berlinger, Maria Zabalaga, Claudia Camacho, Stuart Linas, and Debora Ortega.
    • Division of Hospital Medicine, Department of Medicine, Denver Health, Denver, Colorado2Department of Medicine, Denver Health, Denver, Colorado.
    • JAMA Intern Med. 2017 Apr 1; 177 (4): 529-535.

    ImportanceThe 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.ObjectiveTo understand the illness experience of undocumented immigrants with ESRD who lack access to scheduled hemodialysis.Design, Setting, And ParticipantsA 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 MeasuresThemes and subthemes from semistructured interviews.ResultsAll 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 RelevanceUndocumented 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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