Immigration.
One of the most polarizing issues in the country was the topic of a special session devoted to Improving Care for Vulnerable Patients at ASN Kidney Week 2018. Speakers included Rajeev Raghavan, MD, FASN, associate professor of medicine/nephrology at Baylor College of Medicine; Valerie Luyckx, MD, Institute of Biomedical Ethics, Geneva, Switzerland; Lauren Stern, MD, assistant professor of medicine and nephrology at Boston University; and Jenny Shen, MD, assistant professor of medicine and nephrology at UCLA.
Understanding the issues surrounding the care of undocumented patients begins with numbers.
ESRD patients account for <1% of the Medicare population, yet they account for 7% of the Medicare budget, at a cost of $38 billion per year (2018). There are approximately 11 million undocumented immigrants in the United States. By a conservative estimate, 6500 of these undocumented immigrants suffer from ESRD (1) out of about 700,000 ESRD patients nationwide, so approximately 1% of our ESRD patients are undocumented.
And there is a geographic propensity as well: just 4 states account for about 50% of the undocumented population with ESRD: California (24%), Texas (14%), Florida (9%), and New York (8%). Of these 4 states, only 2—California and New York—offer chronic outpatient hemodialysis therapy using nonfederal funds as treatment options for the undocumented.
Although undocumented immigrants make up a small proportion of our patients, over 60% of nephrologists report that they have provided care to the undocumented and note rising prevalence, with most also reporting inadequate compensation that jeopardizes the long-term availability of treatment to the undocumented population (2).
Providing care to those without clear access to care is not without its burden. Understanding the social circumstances of a patient and the degree of their illness and suffering without sufficient means to help is an ethical and emotional dilemma. To quote Nathan Gray, MD, a palliative care physician and graphic narrator who recounts the patient experience: “I wish he’d had a better death, but more than that, I wish he’d had a better life.” (3).
Undocumented immigrants are more likely to be uninsured than legal immigrants and US citizens (4). And, since they are ineligible for federal services such as Medicare, full scope Medicaid, and the provisions under the Affordable Care Act, the only method for treatment is afforded under the Emergency Medical Treatment and Labor Act (EMTALA), or modified emergency Medicaid in some states, local funds, off-exchange insurance programs, and possibly third-party payers. Other states offer emergency-only dialysis, an extremely resource-intensive, expensive treatment with considerably higher mortality than standard hemodialysis.
Emergency dialysis
Emergency-only dialysis entails just that: dialysis only in cases of emergency after an ER visit, when there are significant symptoms or instability and hyperkalemia. Even without data, this practice already would presume to be associated with significant ethical and moral dilemmas. Consider a patient who is younger, a member of the workforce, and must tolerate the symptoms of end stage kidney disease until a near-death emergency permits them to receive treatment, only to then wait in the emergency room for several hours, perhaps while they have young children waiting for them at home. Then imagine them perhaps repeating the same sequence of events soon afterward.
One study showed that emergency dialysis costs $285,000 per patient per year, as opposed to chronic hemodialysis at $77,000 per patient per year (5) and is associated with a fivefold higher mortality after 3 years and a 14 times higher hazard ratio of death after 5 years (6). On top of this, studies of the patient experience are consistently clear that the practice of emergency-only dialysis can be emotionally devastating. Care that is provided by multiple and inconsistent healthcare providers, accumulation of symptoms to the point of distress, death anxiety, and family burden are all points of consideration for patients as well as for providers—who also are affected by the moral and ethical questions. Boston University’s Stern said with regard to emergency-only dialysis, “As physicians we take an oath to do no harm, and it really seems that we are doing harm with these practices.”
Transplantation
Transplantation, which is excluded from EMTALA, has lower mortality, better quality of life, and is more cost effective. Although there is no legal barrier to transplantation in the undocumented based on the National Organ Transplant Act of 1984, there is an effective barrier—particularly financially for those without insurance coverage—owing to concerns about ability to afford not just the transplant, but posttransplant medications and the associated social circumstances. By contrast, there are no barriers to organ donation based on citizenship status, so the undocumented can contribute to the organ pool, but have significant limitations to benefit from it.
In 2014, Illinois became the first state to list undocumented patients for kidney transplant. The rationale behind this move was based not only on ethics, but also on economics: for Illinois, transplant is the cheaper option for each patient who receives dialysis for at least 2.7 years (7). In fact, if a patient lives at least 8 years, transplantation would save $321,000 per patient—and we expect patients to live much longer than 8 years (8).
The counterargument to listing undocumented immigrants for transplant is the perception that they would not do as well as citizens given their circumstances, access to medications, and care—and may be deported where the access to care may even be worse. However, Shen and colleagues conducted a study comparing a group of US citizens and permanent residents to the undocumented and found that undocumented immigrants actually had a greater graft survival rate when results were unadjusted. And no increased rate of graft loss was observed when the findings were adjusted for demographics, comorbid conditions, dialysis, and transplant-related factors (9).
Politics and kidney care
There are other, more politically minded arguments against having undocumented immigrants become transplant recipients. One of the arguments concerns supply and demand.
If there are over 100,000 patients on the transplant waitlist with only 12,000 patients being transplanted per year, is it fair to allow undocumented patients in the pool to increase the waitlist size? Shen and colleagues also found that undocumented patients were more likely to have a living donor (60%), and the addition of undocumented patients increased the waitlist by only 3% (9).
Additionally, if these individuals add to the donor pool by donating organs when they die, is it fair for them to not be able to receive an organ if needed? If transplantation is cost-effective and living donors are more available for this population, wouldn’t this be potentially low-hanging fruit to help save and improve lives while cutting costs?
Taxpayer funding of healthcare for the undocumented is controversial, to say the least. However, it should be noted that undocumented immigrants contribute nearly $12 billion in taxes, with $2.4 billion directed toward Medicare (9). They also generate a surplus in the magnitude of billions in Social Security programs, and from 2000 to 2011, generated a $35.1 billion surplus in the Medicare Trust Fund (10).
They also have a very high rate of employment: 94% are employed, and they make up about 5% of the total civilian labor force (11). Yet, when they are subjected to emergency-only dialysis, the employment rate drops significantly from >90% to about 14% due to the burden of illness and the irregularity of their schedule given their dependence on care (5). Regardless of stances on immigration status, being sick and having access to suboptimal care would appear to result in a significantly increased financial burden than would having access to more standardized treatment options.
Our system isn’t working. So what do we do to fix it? What are the next steps?
We advocate. We educate. We demand a national policy for ESRD in the undocumented population (12). We ask that we be able to treat the sick as equal, and by ethics, we should not be obligated to restrict care based on citizenship status.
References
- 1.↑
Ra R. Dialysis for undocumented immigrants in the United States. Adv Chronic Kidney Dis 2015; 22:60–65.
- 2.↑
Hurley L. Care of undocumented individuals with ESRD: A national survey of US nephrologists. Am J Kidney Dis 2009; 53:940–9.
- 3.↑
Gray N Cruel carousel: The grim grind of “compassionate” dialysis. AMA J Ethics 2018; 20:E778–779.
- 4.↑
Zuckerman S. Undocumented immigrants, left out of health reform, likely to continue to grow as share of the uninsured. Health Affairs 2011: 10:1997–2004.
- 5.↑
Sheikh-Hamad D1. Care for immigrants with end-stage renal disease in Houston: A comparison of two practices. Tex Med 2007; 103:54–8.
- 6.↑
Cervantes L, et al.. Association of emergency-only vs standard hemodialysis with mortality and health care use among undocumented immigrants with end-stage renal disease. JAMA Intern Med 2018; 178:188–195.
- 7.↑
Ansell D. Illinois law opens door to kidney transplants for undocumented immigrants. Health Affairs 2015; 34:781–787.
- 8.↑
Ellena A, Linden M. Kidney transplantation in undocumented immigrants with ESRD: A policy whose time has come? Am J Kidney Dis 2012; 60:354–359.
- 9.↑
Shen JI. Association of citizenship status with kidney transplantation in Medicaid patients. Am J Kidney Dis 2018; 71:182–190.
- 10.↑
Leah Zallman, et al.. Unauthorized immigrants prolong the life of Medicare’s trust fund. J Gen Int Med 2015; 31:122–127.
- 11.↑
Passel J, et al.. Size of U.S. unauthorized immigrant workforce stable after the great recession. Pew Research Center 2016. http://www.pewhispanic.org, accessed Nov. 30, 2018.
- 12.↑
Cervantes L. The United States needs a national policy on dialysis for undocumented immigrants with ESRD. Am J Kidney Dis 2018; 71:157–159.