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

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.

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.

Approximately 11.3 million undocumented immigrants live and work in the United States.¹ Because this low-income population is excluded from a range of public benefits that include Medicare, federally funded Medicaid, and the insurance provisions of the Affordable Care Act, undocumented immigrants are a significant portion of the post–Affordable Care Act population who remain uninsured.² Their access to health care is limited largely to safety-net provisions for the uninsured, chiefly, nonprofit community health centers, public clinics, and emergency treatment in hospital emergency departments (EDs) mandated by the 1986 Emergency Medical Treatment and Active Labor Act (EMTALA).^2,3

Arranging care is especially complex when an undocumented immigrant is diagnosed with end-stage renal disease (ESRD), for which hemodialysis is a life-sustaining treatment.^4,5 Undocumented immigrants’ ineligibility for public benefits means they cannot access the diagnostically based Medicare entitlement for hemodialysis.⁶ An estimated 6480 undocumented immigrants in the United States have ESRD.⁷ Their access to hemodialysis depends on state policy and local safety-net investments. Some states, including California and New York, use state emergency Medicaid programs to finance scheduled hemodialysis for these patients.^8,9 Most states, including some with large undocumented immigrant populations, offer nonstandard emergent-only hemodialysis, accessed through the ED under EMTALA and reimbursed by states’ emergency Medicaid programs.^4,7,10 In a Denver hospital, for example, patients who present with critical illness are admitted and receive 2 days of consecutive emergent-only hemodialysis through an arteriovenous fistula.¹¹ A cost-utilization study comparing 2 approaches in Houston, Texas, found that emergent-only hemodialysis is 3.7 times more expensive than scheduled thrice-weekly hemodialysis owing to a higher volume of ED visits, more frequent admissions to medical intensive care units, and longer inpatient stays.¹² Consistent with these findings, a Colorado analysis of “superutilizers” (defined as patients with high numbers of hospitalizations) found that patients with ESRD who lacked access to scheduled hemodialysis had the highest per capita costs owing to a high number of inpatient admissions (33.9 mean annual inpatients admissions per person).⁵ We designed a qualitative research study to gather information about the experience of chronically ill patients who lack access to scheduled hemodialysis because of their immigration status (hereinafter referred to as undocumented patients).

The study included 20 semistructured interviews with undocumented Latino patients diagnosed with ESRD who lacked access to scheduled hemodialysis. This study was approved for human subjects through the multi-institutional review board of the University of Colorado, Denver. All study participants provided written informed consent and received financial compensation. The consent form was read verbatim in Spanish by the interviewer to account for variation in patient literacy. All participants received a copy of the signed consent form.

Eligible participants were adult undocumented, Spanish-speaking Latino immigrants with ESRD who accessed hemodialysis through the ED or urgent care center at a safety-net hospital in Denver, Colorado. Patients without decision-making capacity were excluded. This hospital provides emergent hemodialysis for a mean of 55 to 60 people per month. All patients with ESRD undergo an arteriovenous fistula surgery for hemodialysis access.

Participants were recruited using convenience sampling methods. Patients meeting eligibility criteria and receiving emergent-only hemodialysis on the day of interviews were invited to participate in the study. To receive emergent-only hemodialysis, a hemodialysis chair must be available and a patient must be critically ill, defined as the presence of a potassium level greater than 5.2 mEq/L (to convert to millimoles per liter, multiply by 1.0); a bicarbonate level less than 15 mEq/L (to convert to millimoles per liter, multiply by 1.0); an oxygen saturation level less than 90%; uremic symptoms, including confusion, dyspnea, and substantial nausea and vomiting; diminished mental status or other neurologic signs and symptoms; and/or severe shortness of breath. Patients admitted for emergent-only hemodialysis stayed in the hospital overnight to receive a second hemodialysis session the following day. Patients were discharged after their second hemodialysis session and typically returned 6 to 7 days later, critically ill, to repeat the cycle. Patients were sometimes kept a third night or discharged before their second hemodialysis treatment if the hemodialysis unit had no available hemodialysis chairs.

The semistructured interviews were conducted in Spanish and used open-ended questions to explore the illness experience and perspectives of undocumented patients with ESRD. Questions iteratively changed during the course of interviewing (the question guide is found in the Box). Initially, patients were asked to describe the circumstances of their diagnosis, the effect of their diagnosis on their daily life, and the consequences of emergent-only hemodialysis on themselves and their families.

Box Section Ref ID

One of us (L.C., the study’s principal investigator) identified, obtained consent from, and interviewed eligible participants for the study as they were admitted to the hospital from July 1 to December 31, 2015. The principal investigator is a bilingual and bicultural physician with an established clinical relationship with the patients. Interviews were conducted one-to-one during hemodialysis or after hemodialysis while the patient was in his or her hospital room. Interviews were audiorecorded and then professionally translated, transcribed verbatim, and deidentified. Once transcribed, all interviews were reviewed by the principal investigator and 2 of us who are native Spanish speakers (M.Z. and C.C.) for accuracy. The principal investigator took field notes after each interview. Recruitment of study participants and interviews ceased when no new perspectives or themes emerged. Participants provided demographic information that included their number of years in the United States and timing of ESRD diagnosis. A Charlson Comorbidity Index score (range, 2-15, with higher scores indicating more comorbidities)¹³ was calculated through review of patient medical records.

Transcribed interviews were analyzed using Atlas.ti software (version 7.5.12; Scientific Software Development GmbH). Data were analyzed using an inductive approach from March 1 to June 30, 2016. Reliability among the 4 research team members (L.C., S.F., C.C., and D.O.) was achieved through the independent review of interviews using open coding procedures and weekly meetings to reach consensus on themes and subthemes.

We approached 20 patients for participation and all 20 agreed to be interviewed. Table 1 summarizes the characteristics of the 20 undocumented Latino patients with ESRD who participated in this study (10 men and 10 women). Participants had a mean (SD) age of 51.4 (13.8) and a mean (SD) Charlson Comorbidity Index score of 6.5 (2.7). All participants had resided in the United States for at least 5 years preceding their ESRD diagnosis. The length of the interviews ranged from 43 to 72 minutes (mean [SD], 60 [10] minutes). Participants described the following 4 main themes concerning their illness experience: (1) 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. Table 2 provides illustrative quotations for the themes and subthemes.

Participants described the experience of feeling well for 2 days after hemodialysis and then gradually becoming impaired by symptom accumulation. The symptom described as the most burdensome was shortness of breath. Despite restrictions on beverage consumption, fluid built up in the chest and caused dyspnea, a physically debilitating and psychologically distressing symptom. Patients presented in the ED with a weekly feeling of drowning.

Although patients were admitted with the intention of receiving a second hemodialysis session, many were discharged having received only their initial emergent hemodialysis session owing to a lack of hemodialysis chairs. Also, when a hemodialysis unit was at capacity and participants’ laboratory values (in particular, potassium levels) did not meet the threshold for critical illness, they were turned away from admission for hemodialysis treatment even if they met other criteria. Participants also reported that they were likely to wait until symptoms were severe enough to put them at risk for death, rather than present earlier and risk being turned away.

Many respondents had experienced the medical consequences of waiting for a high enough potassium blood level: these included cardiopulmonary resuscitation or severe arrhythmia requiring intensive care unit admission. Despite these experiences, participants described consuming food or beverages high in potassium outside the door of the hospital when they experienced the drowning sensation so their laboratory results would meet the criteria of critical illness. They were also aware that identical laboratory values would be sufficient for treatment on a day when the hemodialysis unit was not at capacity.

Many participants worked subsistence-level jobs, and their ability to work was impeded by the 2 to 3 nights per week they needed to stay in the hospital to accommodate emergent hemodialysis. Many participants also described the frequent hospital stays as one of the most difficult aspects of emergent hemodialysis because they missed their families and friends and needed to arrange care for their minor children. One participant, in describing what she did during her weekly hospital stay, said, “I spend my time talking to my daughter and my husband [over the telephone], or I let the time fly praying. I sleep. Sometimes it seems very long for me.”

Many respondents described near-death and resuscitation experiences in a matter-of-fact way. One young patient reported chronic chest pain, which she believed was related to broken ribs caused by the numerous times she had received cardiopulmonary resuscitation. Another patient described collapsing at home on several occasions and how, because of this, her son did not leave her side for fear he might need to call an ambulance. These experiences often happened after the patients had been admitted with symptom accumulation and were waiting for hemodialysis.

Participants described a recurrent fear of dying that took hold each week as their symptoms began to accumulate and they awaited admission for emergent-only hemodialysis. During the last 2 nights before their presenting for emergent-only hemodialysis, patients reported growing anxiety that led to insomnia because they did not know if they would survive. They described anxiety over the uncertainty of death they experience with their families: “When I talk to my wife, she says, ‘What if they just bring your pants and you never come back?’”

Participants described the comforting relationships they built with each other based on a shared language, culture, illness experiences, and risks associated with emergent-only dialysis. Participants became close friends as they kept each other company during hemodialysis and the 2- to 3-day hospital stays. They gave each other advice on how to deal with symptoms and reached out to newly diagnosed patients to pass on their acquired knowledge. Witnessing the death of one of their peers when cardiopulmonary resuscitation occurred in the hemodialysis center and failed or when they learned that a peer had died and would no longer be with them during hemodialysis caused deep distress.

Participants described the overwhelming distress their families experienced as they watched a loved one cope with symptom accumulation and fear of dying each week. Parents described their children as depressed because they were afraid of losing their parent. Two participants described suicide attempts by their children. Participants preemptively said their goodbyes to their families each week because they were uncertain whether they would survive the process of waiting to be admitted or of undergoing hemodialysis under emergency conditions. Many participants also felt the need to protect their families from further distress by concealing their accumulating symptoms and not sharing new medical information. Participants described hiding in their bedroom as their condition began to deteriorate.

Participants described their families as the reason they were able to persevere with emergent-only hemodialysis. Their families brought them to the hospital, called them while they were inpatients, and picked them up when they were discharged. Describing what he values most, a participant said, “Family, mostly because I think I have a reason to live . . . I live with my daughter and she gives me moral support. She says, ‘Come Dad, let’s go to the hospital.’ They take me to and from the hospital. . . I am very grateful to my daughter.”

Participants understood that they were receiving nonstandard, suboptimal hemodialysis treatment owing to their undocumented status and resulting lack of health care coverage. Nonetheless, they continually expressed appreciation for their care and were grateful to be living on borrowed time. Although hemodialysis was offered to them only when they were critically ill, they would not have access to this life-sustaining treatment in their countries of origin.

Participants described hemodialysis health care professionals at the safety-net hospital as kind and empathetic. Participants came in with low expectations and then began to build great respect for and friendships with their clinicians, whom they came to know by their first names and invited to their family events. Participants described how many of these health care professionals also attended the funerals of undocumented patients who died.

Many participants wanted to receive a kidney transplant and had a family member willing to donate a kidney, yet they lacked access to organ transplant owing to their lack of insurance coverage for lifelong antirejection medication. They were aware of the irony that undocumented immigrants are permitted to enroll as organ donors, and many participants had a heart emblem on their driver’s license because they themselves wanted to donate their organs should they die.

Publications on the experiences of undocumented patients with ESRD and without access to scheduled hemodialysis are scarce. The few reports on this issue provide only the health care perspective.^14-18 Our study exploring the illness experience and perspectives of these vulnerable patients found that they and their families experience substantial physical and emotional distress from symptom accumulation, being turned away from treatment despite being extremely symptomatic when limited resources result in triage by laboratory values, the perceived imminence of death, and lack of access to transplant. Nevertheless they are grateful for the care they receive and describe their health care professionals as angels.

The disruption of personal and family life experienced by many people living with chronic illnesses that requires ongoing treatment is exacerbated among undocumented patients with ESRD because of the weekly occurrence of acute episodes of illness that trigger the emergency condition threshold for admission and emergent-only hemodialysis. Managing even routine hemodialysis often requires family support.¹⁹ Undocumented patients reliant on emergent-only hemodialysis, including weekly hospitalization, report substantial family distress due to the pain of separation, the need to make child care arrangements, and worries about the real risk of dying.

The symptom burden and psychological distress resulting from emergent-only hemodialysis is of concern across health care professions and specialties involved in ESRD care. To our knowledge, only a single study¹² has reported on outcomes among undocumented patients with ESRD. In that study, quality of life was compared between undocumented patients with ESRD who received emergent-only hemodialysis and undocumented participants who received thrice-weekly scheduled hemodialysis. Not surprisingly, and consistent with what our participants describe, undocumented patients receiving emergent-only hemodialysis reported greater physical pain and a lower level of overall function.

The physical symptoms that alert undocumented patients with ESRD that they must go to the hospital for emergent hemodialysis—in particular, the sensation of drowning as fluid builds up in the chest or nausea and vomiting as blood urea levels rise—are normally prevented by routine hemodialysis and pharmacologic symptom alleviation. Nausea and vomiting, for example, are common symptoms described by patients with ESRD and are typically treated with antiemetics that can be taken as often as every 4 hours.^20,21 Pharmacologic symptom alleviation, however, may not be feasible for undocumented patients because these symptoms are the patient’s trigger to present at the hospital. If the symptoms are palliated by medication such that they are not bothersome, the patient’s rising potassium level may trigger a deadly heart rhythm before the patient receives medical attention.

To finance a shift from emergent-only to scheduled hemodialysis for undocumented patients would require policy change at the federal, state, or local level given this population’s exclusion from the Medicare entitlement. At present, EMTALA requires hospitals to perform a medical screening of all patients who present in EDs and to provide emergency treatment if needed until a patient’s condition is stable. EMTALA is not a funding mechanism, and health care professionals rely on state-funded emergency Medicaid provisions to recoup treatment costs for uninsured patients meeting income criteria, including undocumented patients.^22,23 Emergency Medicaid programs typically define emergency medical treatment in terms of conditions that seriously jeopardize a patient’s health, put the patient at risk for bodily dysfunction or organ failure, or cause severe pain. States have discretion to define the emergency threshold and which medical treatments and services are included or excluded from emergency Medicaid reimbursement to health care professionals. California’s emergency Medicaid policy states that “acute, ongoing, and maintenance renal hemodialysis services are covered as emergency services.”^{8,24,25(p4.1)} In Colorado, only emergent hemodialysis is covered.²⁶ Other states whose emergency Medicaid policies may cover some outpatient hemodialysis services include Arizona, Delaware, Florida, Illinois, Massachusetts, Minnesota, New York, North Carolina, Virginia, and Washington and the District of Columbia.¹⁰ Further policy analysis is needed to clarify whether health care professionals in these states are using this mechanism in ways similar to California’s approach.

This study was conducted with a convenience sample from a single safety-net hospital in Colorado; however, to our knowledge, this study is the first to describe the first-hand experience of emergent-only hemodialysis among undocumented patients. In addition, study participants were all Latino. Latino individuals constitute a heterogeneous group, and these patients’ description of their illness experiences cannot be generalized to the whole group.

Undocumented patients with ESRD and no access to scheduled hemodialysis describe significant physical and psychological distress that affects their families and their own ability to work. 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.¹² Comparing the experiences of different states and localities may aid in identifying more humane and higher-value solutions.

Corresponding Author: Lilia Cervantes, MD, Division of Hospital Medicine, Department of Medicine, Denver Health, 660 Bannock, Mail Code 4000, Denver, CO 80204 (lilia.cervantes@dhha.org).

Accepted for Publication: October 10, 2016.

Published Online: February 6, 2017. doi:10.1001/jamainternmed.2016.8865

Author Contributions: Dr Cervantes had full access to all the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.

Study concept and design: Cervantes, Fischer, Berlinger.

Acquisition, analysis, or interpretation of data: Cervantes, Fischer, Zabalaga, Camacho, Linas, Ortega.

Drafting of the manuscript: Cervantes, Fischer, Zabalaga, Camacho.

Critical revision of the manuscript for important intellectual content: Cervantes, Fischer, Berlinger, Linas, Ortega.

Statistical analysis: Cervantes, Fischer, Zabalaga, Camacho.

Obtained funding: Cervantes, Fischer.

Administrative, technical, or material support: Cervantes, Berlinger, Zabalaga, Camacho.

Study supervision: Fischer.

Conflict of Interest Disclosures: None reported.

Funding/Support: The study was supported by the Harold Amos Medical Faculty Development Award from the Robert Wood Johnson Foundation and by grant 2015212 from the Doris Duke Charitable Foundation and University of Colorado School of Medicine.

Role of the Funder/Sponsor: The funding organizations had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.