What is the illness experience of undocumented immigrants with end-stage renal disease and no access to scheduled thrice-weekly hemodialysis?
In this qualitative study of 20 undocumented immigrants with kidney failure, patients described substantial physical and psychosocial distress related to emergent-only hemodialysis care.
States should reconsider policies on access to routine maintenance hemodialysis for undocumented immigrants given the symptom burden and cost.
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.
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.
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.
Cervantes L, Fischer S, Berlinger N, Zabalaga M, Camacho C, Linas S, Ortega D. The Illness Experience of Undocumented Immigrants With End-stage Renal Disease . JAMA Intern Med. 2017;177(4):529–535. doi:10.1001/jamainternmed.2016.8865