“I pray every morning before coming here that nothing bad will happen to my undocumented kidney failure patients,” said a nephrology nurse at a safety-net hospital where undocumented immigrants with end-stage kidney disease receive hemodialysis only in an emergency.
The nurse was one of 50 clinicians interviewed for a qualitative study, published recently in Annals of Internal Medicine, in which researchers found that clinicians who provide emergency-only hemodialysis to undocumented immigrants experience a sense of professional burnout and moral distress because they feel forced to provide substandard care. These clinicians were also frustrated by a “perverse” payment model and inappropriate use of resources associated with providing emergency-only hemodialysis.
But clinicians also reported feeling a sense of admiration for these patients that motivates them to advocate on the patients’ behalf.
An estimated 6,500 undocumented immigrants in the United States have end-stage kidney disease, but many don’t have access to dialysis, according to researchers led by Lilia Cervantes, MD, and Sara Richardson, RN, of Denver Health, Denver, CO. Nearly half of these patients receive hemodialysis only when they’re found to have life-threatening renal failure at a visit to the emergency department. But emergency-only hemodialysis is nearly 4 times more costly than regularly scheduled hemodialysis and has a 14-fold higher mortality rate, the researchers noted.
Clinicians at safety-net hospitals are often required to restrict care for immigrant patients due to policies they may not agree with.
“There isn’t a lot of trust between patients and providers because we’re put in this situation where we can’t provide what we want to in the way that we want,” said an internal medicine physician.
For this study, Dr. Cervantes, Ms. Richardson, and colleagues interviewed 50 interdisciplinary clinicians at safety-net hospitals in Denver, CO, and Houston, TX, to determine how they feel about emergency-only hemodialysis. Interviewees included 27 physicians, 16 nurses, and 7 allied health-care professionals in departments of nephrology, internal medicine, emergency medicine, palliative care, etc.
The researchers identified four high-level themes that emerged from their interviews:
1. Drivers of professional burnout
Clinicians reported that they felt emotionally and physically exhausted by daily organizational and system-level barriers to providing care. In addition, they reported witnessing unnecessary suffering, worrying about betraying patients’ trust, and wrestling with becoming detached.
“You see patients that are awake and alert and talking, and then they come in a week later and they are basically in cardiac arrest and they die. That has been a really tough thing to experience—people that you know by name,” said an emergency-medicine physician.
2. Moral distress from propagating injustice
Clinicians at safety-net centers uniformly believed that making care decisions based on nonmedical factors, such as social status, is unethical. As a result, they said they felt justified in bending the rules to provide emergency-only hemodialysis. Clinicians also reported that the care for these patients was often rushed and neglected patients’ other important medical issues.
“These patients are a lab or vital sign number, and there is no rhyme or reason as to why they get emergency hemodialysis or why they don’t,” said an internal medicine nurse. “They’re just being plugged in and plugged out without regards to what they really need.”
3. Confusing and perverse financial incentives
Clinicians said emergency-only hemodialysis is an inefficient and unsustainable use of hospital and system resources, although some also believed that it reflects a rational, yet unethical, response to “perverse underlying incentives.”
“We give them emergent care, which costs so much more than if we just hook them up into regular hemodialysis, in which case their quality of life would be better, our cost would be lower, and they wouldn’t be clogging up the ED and our hemodialysis chairs,” said an emergency-medicine physician.
4. Inspiration toward advocacy
Clinicians reported being inspired by these patients because of the challenges they face. These feelings strengthened the clinicians’ sense of professional altruism and responsibility, and also motivated them to advocate for better care.
“Having seen how sick they have gotten and how much they are contributing to society…these are people that are holding jobs…they contribute to our society. So, I absolutely think that they deserve the standard of care that we would provide to anyone else,” said an emergency-medicine physician.
Added an internist, “I really wish that legislators would just come and see. I don’t think that they understand how tragic it is. I don’t think that they understand how easy it would be to fix.”
The researchers concluded that emergency-only hemodialysis is harmful to patients as well as clinicians who are forced to provide inadequate care.
“The burden on clinicians of providing emergency-only hemodialysis should inform policy discussions and systemic approaches to support provision of an adequate standard of care to all patients with end-stage kidney disease,” the authors wrote.