Dialysis in the Undocumented: Driving Policy Change with Data.

Abstract

H ilda and I shared childhood stories while we enjoyed one of her favorite Mexican dishes, grilled nopalitos (cactus). Hilda loved nopalitos, but she rarely ate them because they are high in potassium. Hilda had end-stage kidney disease (ESKD), and as an undocumented Mexican immigrant in Denver, CO, she relied on emergency-only hemodialysis. Instead of receiving standard hemodialysis three times per week as required, Hilda would arrive critically ill to the hospital after her nausea, vomiting, and shortness of breath became unbearable. After three cardiac arrests from high potassium levels, she fervently avoided foods high in it. This time, however, she was not worried about potassium. This was our last meal together. She would fly to Mexico a few days later to die. Our hospital medicine team knew Hilda well. We had continuity because we had been admitting her to the intensive care unit or medicine floor one night each week to receive two hemodialysis sessions when she was critically ill. I immediately connected with Hilda because our lives were parallel in many ways. Hilda and I were both in our early 30s, English was our second language, we both grew up in poverty, and we now had children in elementary school. I, however, was documented. My United States citizenship allowed me the privilege of pursuing a medical degree and gaining access to quality healthcare. In contrast, Hilda had been forced to end her education prematurely, marry her mother’s friend for financial stability at the age of 14, and eventually flee to the US to escape poverty. She survived by cleaning homes until her kidneys failed. Initially, Hilda was my patient. Over time, she became a dear friend. The first two years of emergency-only hemodialysis devastated Hilda. Too sick to work, she became homeless, staying with a nurse until we found a shelter for single mothers. Multiple cardiac arrests and resuscitations traumatized her young sons, who called 911 each time she collapsed and witnessed the resuscitations. Her boys did not understand the cycle of separation from their mother for her emergent, weekly dialysis hospital admissions and wondered if she would survive to the following week. After two years of emergency-only dialysis, Hilda’s deep love for her boys and concern about the possibility that her sudden death could leave them alone led her to pre-emptively decide to stop emergency-only dialysis. Had Hilda’s treatment costs been covered by emergency Medicaid, as undocumented immigrants with ESKD are in some other states, she may not have been forced into this terrible decision. Moving to a state where standard dialysis is covered was not an option for Hilda because she wanted her boys to stay in Colorado where they had family and friends. With no other options, she first sought a loving adoptive family in the US so that her boys could grow up and have the opportunity to pursue an education. After carefully finding the right adoptive parents, Hilda wanted to celebrate her life with the people she loved. To show her gratitude, she organized a large Mexican Christmas party and invited all of the healthcare providers and friends that had supported her. She generously gave everyone a small gift to remember her by from the few things she owned. I received the wooden rosary her father had left her. A short while later, Hilda flew home to Mexico and passed away on Mother’s Day in 2014. Two years of caring for Hilda as an internal medicine hospitalist changed me. Grief gave way to anger, anger to determination. I found it morally distressing to continue to provide this type of care. Something had to change and there was little research in this area. One small study had demonstrated that emergency-only hemodialysis was nearly four-fold more expensive due to additional visits to the emergency department and admissions to the hospital, compared to standard outpatient hemodialysis.1 After much soul-searching and advice seeking, I scaled down my clinical hospitalist shifts and gathered a team to do research. For four years, we worked on illuminating the suffering of undocumented immigrants with ESKD that rely on emergency-only hemodialysis. We conducted 20 individual face-to-face qualitative interviews with undocumented immigrants with ESKD and heard first-hand about the emotional and physical burdens and the existential anxiety associated with weekly threats to life.2 We published a retrospective cohort study looking at differences in mortality and found that immigrants who relied on emergency-only hemodialysis had a 14-fold greater mortality rate than those on standard hemodialysis five years after initiating hemodialysis.3 In another retrospective study, we described the circumstances among undocumented immigrants with ESKD who died in the hospital after presenting with ESKD complications, and found that the majority presented with high potassium and a recorded rhythm disturbance.4 I discovered that as a hospitalist physician, I was not the only one distressed. We conducted 50 qualitative interviews to determine the perspectives of interdisciplinary clinicians on providing emergency dialysis and *Corresponding Author: Lilia Cervantes, MD; E-mail: [email protected]; Telephone: 303-602-5075; Twitter: @Cervantes_Lily1