Undocumented immigrants with end-stage renal disease (ESRD) in the United States are ineligible for federal assistance from Medicare, Medicaid, and insurance from the Patient Protection and Affordable Care Act exchanges. Most of the 50 states do not fund standard dialysis for this population, with a few notable exceptions that use various funding strategies. Some undocumented immigrants are forced to resort to emergency-only dialysis under the 1986 federal Emergency Medical Treatment and Labor Act. In certain states, life-threatening indications must exist — such as metabolic acidosis, hyperkalemia, uremia, or volume overload — before dialysis will be administered. A common refrain in the medical community is that this approach to providing dialysis to undocumented immigrants needs to change.
“Dialysis for all people should be covered in every state,” said A. Taylor Kelley, MD, MPH, of the University of Michigan in Ann Arbor. “These are people who have special needs, and the care they receive is very important for them individually and for us as a society collectively.”
In a Perspective article in the New England Journal of Medicine, Dr Kelley and Renuka Tipirneni, MD, discussed preserving solvency for safety-net hospitals by securing funds for uncompensated care. They encouraged providers practicing in an individual health center to seek partnerships with safety net hospital systems and institutions so uncompensated care funding is managed effectively for the health of patients.
Address patient needs in the hospital
“Providers who are aware of undocumented patients in integrated health care systems should appeal to their administrators to develop policies that will cover outpatient dialysis services,” Dr Kelley told Renal & Urology News. “Where emergency care and outpatient care are fragmented, care is more challenging.” Dr Kelley called for addressing patient needs inside the hospital as much as possible before the patient goes home, where resources may not be available.
“A national policy ensuring dialysis coverage for undocumented individuals is one approach,” Dr Kelley said. “Development of national standards for implementing cost-reducing, quality-of-life-improving practices is another. Use of standards would encourage adoption of beneficial practices such as kidney transplant—something Illinois has already done for undocumented individuals.”
“There is a case to be made for integrating changes of emergency-only dialysis practice into the broader legislation priorities that the US Government is focusing on,” according to an editorial in The Lancet Hematology, which noted that approximately 6500 undocumented immigrants with ESRD are estimated to live in the United States. “It should not be so hard to justify the importance of revising a problematic health-care policy that leaves patients’ life in danger on a weekly basis, presents clinicians with a moral dilemma, and piles on financial burdens that American tax payers consequently have to shoulder.”
In its position statement on uncompensated care for both citizens and noncitizens, the Renal Physicians’ Association said the “federal government has an ethical and fiscal responsibility to provide care for patients within our borders.”
Scheduled dialysis should be standard
“Scheduled dialysis should be the universal standard of care for all individuals with ESRD in the United States,” Oanh Kieu Nguyen, MD, of the University of California, San Francisco, and co-authors concluded based on a study published in JAMA Internal Medicine. The study examined the comparative effectiveness and costs of scheduled vs emergency-only dialysis. Of 181 undocumented adults with ESRD attending a safety-net hospital in Dallas, Texas, who applied for off-exchange private health insurance coverage in 2015 (financed by nonprofit charitable premium assistance), 105 (mean age 45 years) started scheduled dialysis and 76 (mean age 52 years) continued with emergency-only dialysis. Patients did not receive insurance coverage because they could not be placed in a participating dialysis center due to capacity or distance, rather than any clinical consideration.
Patients receiving scheduled dialysis were significantly less likely to die than emergency-only dialysis patients: One-year mortality was 3% vs 17%. In contrast, the risk for death was 4.6-fold higher for those remaining on emergency-only dialysis. For every 7 patients treated with emergency dialysis, 1 more would die, compared with standard dialysis.
Patients receiving scheduled dialysis also had significantly fewer emergency department visits (−5.2 vs 1.1 visits/month), hospitalizations (−2.1 vs −0.5 hospitalizations/6 months), and days in hospital (−9.2 vs +0.8 days/6 months) than those receiving emergency-only dialysis.
Investigators estimated a cost savings of $4316 per person per month for patients switched to scheduled dialysis. Meanwhile, costs for emergency-only dialysis patients increased $1452 compared with baseline. Costs included estimated bills for emergency visits, hospitalizations, observation visits, scheduled hemodialysis (HD), and vascular access placement and complications. In this study, most patients continuing on emergency-only dialysis enrolled in scheduled dialysis at the next available opportunity a year later.
In an accompanying editorial, Marlene Martin, MD, of the University of California, San Francisco, argued, as others have, that many undocumented immigrants work and contribute to Social Security and Medicare without reaping benefits from these programs. According to a 2013 study by Leah Zalman and colleagues published in Health Affairs, undocumented immigrants’ net contribution to Medicare was about $2.5 billion. “It is reasonable for undocumented people to benefit from the programs they support,” Dr Martin stated.
“Providing standard hemodialysis and/or kidney transplantation would allow undocumented immigrants to rejoin the workforce,” said Lilia Cervantes, MD, of Denver Health, who has studied the issue of dialysis care for undocumented immigrants. Without a federal policy, “a state by state change in the dialysis and emergency Medicaid policies can provide undocumented immigrants with standard, outpatient dialysis treatments,” she said. Data from California, New York, and Colorado show no surges in undocumented immigrants seeking care when standard HD is available, Dr Cervantes added.
Emotional distress is high
Other recent qualitative studies highlight the strain emergency-only dialysis causes on patients and physicians.
In a 2017 study published in JAMA Internal Medicine, Dr Cervantes and colleagues recorded the experiences of undocumented patients using emergency-only dialysis in Denver. One patient said: “You cannot explain your illness…when you enter through the emergency department, you arrive in bad shape…you need to have a high potassium or they send you home even though you feel you are dying.”
In a July 2018 research letter, Dr Cervantes and fellow investigators reported that more than half of 35 undocumented patients attending Denver Health died of a cardiac arrest or arrhythmia likely related to an emergent circumstance such as hyperkalemia. “Emergency-only hemodialysis should raise serious ethical concerns due to the physical and psychological suffering associated with this practice,” Dr Cervantes and her collaborators commented in the American Journal of Kidney Diseases.
Providers of emergency dialysis likewise experience emotional turmoil. In a study by Dr Cervantes and her team published in 2018 in Annals of Internal Medicine, 50 clinicians in Denver and Houston safety-net hospitals described experiencing moral distress and being driven toward burnout. A nephrology physician confessed: “Emergency hemodialysis makes us feel very inhumane and I don’t like to call it ‘compassionate hemodialysis.’ We’re torturing them.”
A co-investigator on the study, Rajeev Raghavan, MD, of Baylor College of Medicine in Houston, commented in a public policy article in the Clinical Journal of the American Society of Nephrology: “Nephrologists caring for patients who receive emergent dialysis are tasked with the difficult moral dilemma of determining ‘who gets dialysis that day.’”
“The emergent dialysis approach does not allow nephrologists to act in the best interest of the patient or to respect the patient’s autonomy,” Rudolph A. Rodriguez, MD, of VA Puget Sound Health Care System in Seattle, remarked in an opinion piece in Advances in Chronic Kidney Disease.
Funding remains uncertain
States variably fund dialysis care for undocumented immigrants using assorted strategies. The Centers for Medicare & Medicaid Services give states the liberty to define what constitutes an emergency medical condition. As a result, several states have modified their emergency Medicaid definition to include the diagnosis of ESRD and offer standard, outpatient dialysis. In January 2019, New York City announced a universal health care program, NYC Care, providing medical services for all city residents, including undocumented immigrants, using a sliding fee scale; details on dialysis coverage are currently unknown. A very different reality exists in some other states and localities.
Clinicians may ponder how to respond given the uncertainties surrounding patient care and payment. Thirty-nine percent of undocumented immigrants are uninsured compared with 9% of US citizens, according to the Henry J. Kaiser Family Foundation. “Providing charity care is part of the work of many providers, but when it reaches its limits and payment becomes an issue, more creative and collaborative community approaches are needed,” Dr Kelley said.
The theme of World Kidney Day 2019 is “Kidney Health for Everyone Everywhere.” It calls for “transparent policies governing equitable and sustainable access to advanced health care services (e.g. dialysis and transplantation) and better financial protection (e.g. subsidies) as more resources become available.” Many believe that ensuring standard outpatient dialysis for undocumented immigrants is in keeping with this mission.
- Kieu Nguyen O, Vazquez MA, Charles L, et al. Association of scheduled vs emergency-only dialysis with health outcomes and costs in undocumented immigrants with end-stage renal disease. JAMA Intern Med. 2018. DOI:10.1001/jamainternmed.2018.5866
- Martin M. Providing comprehensive health care for undocumented people in the United States. JAMA Intern Med. 2018. DOI:10.1001/jamainternmed.2018.5847
- Cervantes L, Fischer S, Berlinger N, et al. The illness experience of undocumented immigrants with end-stage renal disease. JAMA Intern Med. 2017;177:529-535. DOI:10.1001/jamainternmed.2016.8865
- Cervantes L, O’Hare A, Chonchol M, et al. Circumstances of death among undocumented immigrants who rely on emergency-only hemodialysis. Clin J Am Soc Nephrol. 2018. DOI:10.2215/CJN.03440318
- Cervantes L, Richardson S, Raghavan R, et al. Clinicians’ perspectives on providing emergency-only hemodialysis to undocumented immigrants: A qualitative study. Ann Intern Med. 2018;169:78-86. DOI:10.7326/M18-0400
- Sehgal AR. Dialysis without borders. Ann Intern Med. 2018;169:122-123. DOI:10.7326/M18-1267
- Raghavan R. New Opportunities for funding dialysis-dependent undocumented individuals. Clin J Am Soc Nephrol. 2017;12:370-375. DOI:10.2215/CJN.03680316
- The undocumented struggle with emergency-only dialysis. Lancet Haematol. 2018;5:e378
- Kelley AT and Tipirneni R. Care for Undocumented immigrants — rethinking state flexibility in Medicaid waivers. N Eng J Med. 2018;378;18:1661-1663. DOI:10.1056/NEJMp1801871
- Interview with Dr. Taylor Kelley on options for states seeking to expand health insurance coverage for undocumented immigrants. Supplement to the N Engl J Med. 2018; 378:1661-1663
- Cervantes L, Grafals M, Rodriguez RA. The United States needs a national policy on dialysis for undocumented immigrants with ESRD. Am J Kidney Dis. 2018;71:157-159.
- Fernández A and Rodriguez RA. Undocumented immigrants and access to health care. JAMA Intern Med. 2017;177:536-537.
- Rodriguez RA. Dialysis for Undocumented Immigrants in the United States. Adv Chron Kid Dis. 2015;22(1):60-65.
- Health Coverage of Immigrants. Henry J. Kaiser Family Foundation; December 13, 2017. Accessed on January 2, 2019 at https://www.kff.org/disparities-policy/fact-sheet/health-coverage-of-immigrants/
- Zallman L, Woolhandler S, Himmelstein D, et al. Immigrants Contributed An Estimated $115.2 Billion More To The Medicare Trust Fund Than They Took Out In 2002–09. Health Affairs. DOI:10.1377/hlthaff.2012.1223
- Renal Physicians’ Association Position on Uncompensated Kidney Care for Citizens and Non-Citizens. Accessed at https://www.renalmd.org/page/KidneyCareCitizens
- Mayor de Blasio Announces Plan to Guarantee Health Care for all New Yorkers. NYC.gov; January 8, 2019. Accessed at https://www1.nyc.gov/office-of-the-mayor/news/017-19/mayor-de-blasio-plan-guarantee-health-care-all-new-yorkers#/0
- Kidney Health for Everyone Everywhere. World Kidney Day 2019. Accessed on January 9, 2019. https://www.worldkidneyday.org/2019-campaign/2019-wkd-theme/