INTRODUCTION

Undocumented immigrants in the USA are ineligible for Medicare or full Medicaid benefits. In most US states, their care falls to safety-net hospitals and free clinics. For hospitals to receive Medicaid reimbursement for care, the Emergency Medical Treatment and Active Labor Act (EMTALA) states that care must be for “the treatment of an emergency medical condition.1, 2” This is particularly problematic for the estimated 6500 undocumented immigrants with end-stage kidney disease (ESKD) who may not be eligible for standard care (i.e., three times per week hemodialysis or home peritoneal dialysis).1 Instead, these primarily young and Latino undocumented immigrants with ESKD must wait until they are at the brink of death to receive emergency-only hemodialysis (EOHD).3 To receive EOHD, patients are evaluated in an emergency department (ED) and must be critically ill, which is variably defined but generally includes symptoms or objective findings associated with hyperkalemia, uremia, or fluid overload.1, 4 Additionally, patients suffer tremendous physical and psychosocial distress from the weekly symptom accumulation, near-death experiences, and from witnessing the effect of EOHD on their own family caregivers, who witness the accumulating symptoms that trigger critical illness.5

Little is published, however, about how EOHD affects the family caregivers as a relevant factor potentially affecting access to standard dialysis for undocumented immigrants. This study uses a qualitative research design to describe the experiences of primary caregivers of undocumented immigrants with ESKD who rely on EOHD.

METHODS

Study Design

The study comprises semi-structured interviews with primary caregivers (N = 20) of undocumented immigrants with ESKD that rely on EOHD. The study was approved through the multi-institutional review board of the University of Colorado, Anschutz Medical Campus. Participants provided written informed consent.

Setting and Participants

Eligible participants were English- or Spanish-speaking adults that were identified as the primary caregiver by the undocumented immigrant with ESKD that relied on EOHD in Denver, Colorado. Since February 1, 2019, undocumented immigrants with ESKD in Colorado receive standard thrice-weekly outpatient hemodialysis. Prior to that time, Denver Health (DH), the safety-net hospital for Denver County, provided EOHD to an estimated 60 undocumented immigrants. The EOHD approach in Colorado is similar to that in other US states. To receive EOHD, an undocumented immigrant had to present to an ED and be critically ill (potassium > 5.2, bicarbonate < 15, oxygen saturation < 90% or an increase in baseline oxygen requirement, or signs/symptoms attributable to uremia). Patients who were admitted for EOHD stayed in the hospital overnight, received a second dialysis session prior to discharge, and repeated this cycle every 6–7 days. Our study used convenience sampling to recruit caregivers prior to the February 1, 2019 health policy change. Undocumented immigrants presenting to the hospital for EOHD received an information sheet (available in English and Spanish) and caregivers could then choose to participate.

Interview Guide

The interviews included open-ended questions (see the Appendix in Table 3) to understand the experiences of primary caregivers for undocumented immigrants with ESKD that rely on EOHD.

Data Collection

L.C. (principal investigator) identified eligible patients as they presented to the hospital for EOHD. The bilingual Spanish-speaking research assistant (C.C.) met with patients and provided the information sheet. Participants were interviewed one-on-one at their site of preference from June 28, 2018, to November 15, 2018. The semi-structured interviews were audio-recorded, transcribed, and de-identified. Recruitment of participants ended when we reached thematic saturation (i.e., no new themes emerged).

Analysis

We used thematic analysis and principles of grounded theory.6, 7 Atlas.ti software (version 8.3.1) was used to systematically organize the data and perform open coding. To synthesize and contextualize data, two of the authors (L.C. and A.C.) independently read the transcripts and met regularly to discuss emerging themes, discrepancies, and alternative explanations. L.C. and A.C. reached consensus on themes with R.H. to ensure the themes reflected the full range and depth of the data.8 We pursued agreement through discussion when differences in interpretation arose. Investigator triangulation and member checking ensured that the themes reflected the full depth and range of the data.

RESULTS

Participants (n = 20) had a mean (SD) age of 46 (17) years, 13 (65%) were female, 18 (90%) were undocumented, all were primarily Spanish-speakers, and the median caregiving duration was 4 years (IQR: 1.5–5.3) (Table 1). Seven (35%) caregivers were adult children of the patient and the remaining were spouses. We identified five high-level themes: caregiver role, caregiver burden, unpredictable emergency-only hemodialysis, effect on children, and faith and appreciation of healthcare. See Table 2 for themes, subthemes, and illustrative quotations.

Table 1 Characteristics of Caregivers for Adults Receiving Emergency-Only Hemodialysis
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Table 2 Themes and Subthemes with Illustrative Quotations
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Caregiver Role

Providing Emotional, Physical, and Economic Support

Caregivers identified assistance with activities of daily living and economic support as their main roles. A caregiver commented, “I feed him, sometimes he gets diarrhea and I change his diaper, bathe him, and change his clothes.” Caregivers provided economic support to maintain the household or purchase medications: “I do the house chores. I make tamales to sell. I take care of my children. I take care of my husband because he cannot walk, bathe, or take care of himself. I give him his medicine and lay him down. Every day I devote myself to our home.”

Advocacy and Care Navigation

Caregivers described advocating for the patient’s well-being by helping to navigate care through communication with providers, appointment scheduling, and resolving social barriers: “Well, I tell him to do his best. I make him come to his appointments every time he has one. I have to keep an eye on him, because I feel that if I were not by his side he would not come to get dialysis.”

Caregiver Burden

Anxiety Related to Patient and Personal Death

Caregivers worried that they would miss detecting important symptoms if they were not constantly at the patient’s side. One caregiver described waking up in the middle of the night out of fear the patient had stopped breathing. Another caregiver describing leaving her job to stay at home to ensure the patient’s well-being. Some caregivers reported enduring personal death anxiety regarding uncertainty of who will provide supportive care to the patient if the caregiver is the first to pass away.

Emotional Exhaustion and Personal Illness

Caregivers reported emotional exhaustion and expressed a sense of guilt for holding this sentiment. One caregiver reported emotionally coping in isolation: “Sometimes I’m scared and sad when she is suffering. I isolate myself. I stop at a park and cry. I can’t do anything else. The other day, a police almost stopped me but I think he had pity on me.” Many caregivers struggled balancing their emotional exhaustion with their own personal illnesses: “I have diabetes and I try to think, ‘I’m not sick, I’m well.’ Sometimes I leave the house because I have too much stress. There are moments that are very difficult and I cry, scream, and shout. We have problems that give me headaches and body pain.”

Struggle with Finances

Caregivers described challenges with household finances as the patient’s ESKD progressed: “I didn’t have to worry about anything financially. I didn’t know how to pay bills and now I’m the one that takes care of bills. When my dad sees that mom and I don’t have enough money [crying], well, I know he would like to help us but he can’t.” Respondents also reported relying on financial support from family members.

Self-Care

Caregivers reflected on how their caregiving role and experiential knowledge of ESKD has enforced better self-care behaviors: “After seeing the illness, I try to take care of myself. I go to the clinic; I check all my diabetes and kidney levels.” Another caregiver described her increased self-efficacy: “I went to the hospital and made an appointment for stress and anxiety. I have to be healthy for my children and my mom. I was afraid to seek help but I have to ask for help.”

Redefining Relationship

Spouse caregivers reflected on how ESKD changed their relationship with the patient, with more time spent in the home and reduced engagement in activities they once enjoyed. One caregiver said, “I miss her support. We would do the laundry together and we would go out more often. Now if I take her somewhere, we have to get back because she has dialysis. I don’t have time to relax. I can’t go on holidays either.” Spouse caregivers also described intimacy issues: “His stomach has been cut. He’s been cut all over. I can’t touch him anymore. I am affectionate and loving, but we haven’t been intimate despite sleeping together for many years.”

Unpredictable Emergency-Only Hemodialysis

Acute Episodes of Illness that Trigger Emergency

Caregivers reflected on acute episodes of ESKD that prompted an ED visit: “I’m nervous and tense when he’s not well. We were all in the kitchen and he got sick. His face was pale and I saw that he started to bend over and I said, ‘let’s go to the hospital!’ I couldn’t control my anxiety. When he needs emergency dialysis, he has headaches, body aches, and he starts to shake.” Some caregivers recalled acute symptoms concerning for death: “I thought I was going to lose him that day. He started coughing and I sat him up. I went to the bathroom after he fell asleep but then I heard him cough and he had turned blue.”

Stress when Patient Is Denied Dialysis

Caregivers described emotional distress or frustration with the medical team when the patient was denied EOHD due to lack of hospital capacity and/or the absence of critical lab levels and vital signs necessary to qualify for EOHD: “The most stressful thing is seeking care and not receiving it. The doctor saw how my dad looked yet said that based on the studies he did not need dialysis. He said that my dad was just occupying a room. Imagine being told this? Do I leave him to die? Not a single doctor could help my dad. Not one. This was stressful and keeps me awake at night.”

Impact on Work and Sleep

Caregivers described sleep disturbance and inability to work. One respondent made the analogy of being hospitalized himself while witnessing the patient go through weekly EOHD. Employed caregivers reported exhaustion from their disrupted work schedules in combination with the patient’s EOHD schedule. Some caregivers face the challenge of choosing between maintaining their job for household income or providing supportive care.

Emotional Relief After a Session of Emergency-Only Hemodialysis

Caregivers described a sense of relief after the patient received EOHD because of symptom improvement and because patients were able to participate in activities at home: “When my mom receives dialysis, she feels better and takes better care of things at home. We can actually prepare food together.” Other caregivers noted a change in the patient’s affect after EOHD treatment: “He is very happy after he receives dialysis. He even stands up alone and tries to walk by himself. Those are the days that he is happiest.”

Effect on children

Dropping Out or Missing School

Spouse caregivers reported that their children had dropped out of school to work or provide caregiving: “My daughter had to drop out of school to help us after he was diagnosed with kidney failure. She was studying and had to stop to work. She wanted to keep studying but how will we pay for his illness? My other daughter also dropped out of high school to help us. I can’t get a job because it would mean leaving him alone.” Child caregivers also reported dropping out or missing school or delaying graduation to provide caregiving at home or to work.

Psychosocial Distress

Child caregivers described constant anxiety and sadness from unpredictable symptoms and their fear of losing their parent. They also described sadness and anger from witnessing the emotional tension that caused parental discord. Spouse caregivers lamented that because of the illness, their children had grown up too fast and were unable to enjoy childhood: “My daughter was crying. We thought that he was going to die. It is really sad that we have to do this every week. My youngest daughter hasn’t enjoyed her childhood. She’s small. She’s always with me and helps take care of him. This has affected her though and she has changed. She has become very angry.”

Children Assuming Caregiver Responsibilities

Spouse caregivers described leaving their children as caregivers when they need to leave the house. They also described support from their children for language interpretation in the hospital and for transportation during EOHD: “Instead of me supporting him, my daughter has been the strong one. She is always looking out for us. Our daughter has been a strong girl and has supported us a lot. She takes him to the hospital and brings him back and never gets upset.”

Juggling Multi-Generational Caregiving of Children

Child caregivers who themselves have children described having to juggle caring for their own children with their parent. Oftentimes, providing care to the parent came at the expense of leaving their own children with older siblings or missing their children’s school events: “It is difficult when I have to go to the school and I also have to take her to dialysis. One time, for example, my little girl was in a dance performance so I had to drop her off at school and then drop my mom off at the hospital for dialysis. I then came back to school for the dance performance. Then back to dialysis and then back to school.”

Faith and Appreciation

Comfort in God

Caregivers described relying on God for emotional support, especially when facing a “bad experience.” Some caregivers also relied on God to take care of the patient’s well-being during the night and on the timing of the patient’s death: “It is important to have faith in the all-powerful God. He is the one that gives us life and he is the one that takes it away.”

Appreciation of Healthcare

Several caregivers described a deep appreciation for their care even though dialysis was offered on an emergency-only basis because it is not available in their home country. Caregivers also described the healthcare staff as attentive and approachable: “I can’t speak English or read but the doctors and nurses approach you and they are very attentive. They introduce themselves. They are really nice and friendly.”

DISCUSSION

Our study identified themes and subthemes that reflect the experiences of primary caregivers of patients receiving EOHD. We found that primary caregivers for patients with ESKD who rely on EOHD encounter death anxiety as well as physical and emotional exhaustion. Caregivers described the impact of EOHD on children because either the spouse caregiver shared children with the patient or the caregiver was an adult child of the patient. In addition to psychosocial distress, EOHD had forced children to drop out or miss school. Nevertheless, caregivers found comfort in God and were appreciative of the healthcare they receive.

Our findings complement the literature describing high caregiving burden among caregivers of patients with ESKD who receive standard dialysis.9 Caregivers similarly feel overwhelmed while providing support with daily activities and advocate for the patient despite stress about their own health.10 This worsens their sleep and emotional and physical health.9, 11,12,13 Our study also confirms that caregivers use faith and spirituality to cope14.

Unique to the caregivers of this study is the added distress surrounding the immigration issues and EOHD process. Family members describe growing anxiety while observing the patient’s progressive symptom accumulation to the incapacitating level needed to meet criteria for EOHD while knowing the risk of death is also rising. This caregiver stress is multiplied when the visibly ill patient is denied dialysis because they do not meet objective criteria. Caregivers describe the effect of this unpredictable process on their ability to work and their family dynamics. The inability of these undocumented patients to enroll in federal assistance programs places an additional financial burden on the caregiver and their children, who may drop out of school to fulfill responsibilities to the family.

Our findings on the experiences of caregivers were consistent with those reported by patients. 5 Patients similarly described death anxiety, distress due to acute episodes of illness that trigger the emergency, stress when denied dialysis, relief after EOHD, and appreciation of the healthcare system.5 Clinicians who provide EOHD also described emotional exhaustion, perceived lack of control over EOHD criteria, physical exhaustion from overextending themselves to bridge care, and inspiration toward advocacy15. This study adds to the growing body of literature which shows that EOHD is below the recommended standard of care for patients with ESKD. Compared with standard hemodialysis, EOHD is associated with higher mortality3, 16, greater healthcare utilization3, 16, higher complication rates17 and healthcare system costs16, more physical and psychosocial distress for patients5, 18, 19, higher rates of burnout and emotional exhaustion for clinicians15, and greater caregiver burden. These studies show that states using EOHD rather than standard hemodialysis for undocumented immigrants are providing less efficient care with worse clinical outcomes, at a much higher cost. Our study suggests that EOHD also imposes substantial health effects and social costs on caregivers and their families, due to lost employment and educational opportunities.

A recent review of the emergency Medicaid language across the USA showed that several states (e.g., Arizona, Washington, Colorado) have modified their emergency Medicaid language to include ESKD in the definition of an emergency medical condition.2, 20 Federal officials defer to states to define what constitutes a medical emergency. In states that have not modified their emergency Medicaid definition, and where there are no other available resources (e.g., private health insurance paid through charitable support, county-funded or safety-net hospital funded free-standing dialysis centers), undocumented immigrants rely on EOHD. Clinicians across the country in states with high numbers of undocumented immigrants have advocated for a similar health policy change to provide standard dialysis to patients regardless of their immigration status4, 21,22,23,24,25,26,27.

Limitations

Primary caregivers were recruited from a single academic safety-net center. The generalizability of our findings is uncertain because access to standard dialysis and EOHD protocols vary throughout the country. Additionally, our aim was to describe the diversity and depth of participant perspectives, and cannot ascertain the frequency of opinion. Our study, however, is the first to describe the experience of primary caregivers of patients that rely on EOHD.

CONCLUSION

Primary caregivers of undocumented immigrants with ESKD who receive EOHD suffered high levels of stress. They described the unpredictability of EOHD and its adverse consequences for the patient, the caregiver, and the family, including serious effects on their own children. The distress experienced by primary caregivers and families of undocumented immigrants who receive EOHD, along with the worse clinical outcomes and higher costs associated with EOHD, indicates that policy reform is needed to provide undocumented immigrants with ESKD access to standard dialysis.