Clinicians Share Agony When Emergency Dialysis Is Only Option

Norra MacReady

May 23, 2018

Policies that allow undocumented immigrants to obtain hemodialysis only in emergencies hurt more than the patients themselves. The policies also take a toll on clinicians who feel forced to provide what they view as substandard care, according to the findings of a new study.

Moral distress, burnout, and frustration with inconsistent financial incentives were common themes shared by healthcare personnel from two safety net hospitals during study interviews.

"[O]ur study confirms others that have found that clinicians providing care for patients with complex needs in safety-net settings face high rates of professional burnout and that insufficient resources for patient care is a primary source of stress," Lilia Cervantes, MD, a hospital medicine specialist at Denver Health and the University of Colorado in Denver, and colleagues write.

The authors reported their results in an article published online May 21 in the Annals of Internal Medicine.

Another issue highlighted in this study are "the unintended consequences and ethical dilemmas health care policy can generate," Cervantes and colleagues add. These clinicians "regularly struggled to reconcile ethical principles of justice, beneficence, veracity, and respect for autonomy in a policy environment they believed supported none of these values."

The findings should "inform discussions of systemic approaches to support provision of adequate care based on medical need," the authors write.

On a more positive note, the study participants also said their experiences with providing emergency-only hemodialysis (EOHD) inspired them to advocate for their patients and renewed their feelings of professional altruism and responsibility.

Thousands of Patients in the United States Rely on EOHD

It is estimated that 6500 undocumented immigrants in the United States suffer from end-stage kidney disease, with half of those patients living in jurisdictions that require them to obtain EOHD.

Hemodialysis policies and protocols for undocumented immigrants vary by state, the authors explain. Some states, such as Arizona and California, allow for the provision of standard outpatient dialysis to this population. Others, including Colorado and Texas, restrict their access to EOHD, and only when the patient meets criteria for an emergent, life-threatening illness, such as severe hyperkalemia, volume overload, or uremia.

Such regulations dramatically increase the costs associated with dialysis. "Each EOHD patient costs local health care systems an average of $300,000 to $400,000 annually in Houston, Texas, and Denver, Colorado," whereas annual Medicare costs average $90,000 per hemodialysis patient, writes Ashwini R. Sehgal, MD, in an editorial accompanying the new study,

In addition, recent evidence suggests that the 5-year mortality rate associated with EOHD is 14 times higher than that seen with standard dialysis. Earlier research has documented the stress patients experience from enduring weekly symptom accumulation, which is often required to be eligible for EOHD, and the regular specter of imminent death.

What has not been documented until now, however, is how EOHD affects the clinicians who must provide this type of care. To describe their experiences and perspectives, Cervantes and colleagues conducted a qualitative study consisting of in-depth interviews with 50 interdisciplinary clinicians at Denver Health and Harris Health, safety net health facilities in Denver and in Houston, respectively.

The interviewees came from a variety of disciplines, including physicians (n=27), nurses (n=16), and allied health professionals (n=7). They had a mean age of 53 years (standard deviation [SD], 10), and included 31 female clinicians (62%). They had a mean of 8.7 years (SD, 7.9) of clinical experience providing EOHD.

Study participants frequently cited the emotional exhaustion and "anguish" they felt at watching patients suffer with severe symptoms that could have been avoided with standard hemodialysis, Cervantes and colleagues write.

Clinicians also described anger at feeling forced to deny EOHD even when patients appeared quite ill. Along with prolonging the patients' suffering, the clinicians believed such denials made them appear callous or uncaring and chipped away at their patients' trust in them, which they described as "demoralizing."

The respondents also reported struggling with moral distress from feeling forced to make decisions based on nonmedical factors, which they perceived as unethical. To compensate, they sometimes resorted to "bending the rules," but this then "made them worry about their personal integrity."

Nevertheless, clinicians and patients alike often "gamed the system," participants said in interviews. Clinicians did so by exaggerating patients' symptoms and laboratory values, and patients did so by consuming high-potassium foods.

Other common sources of frustration cited by the interviewees were the confusing and often "perverse" financial incentives. Not only is EOHD more expensive than standard hemodialysis, but forcing patients to go to the emergency department often meant wasting other resources as well. The clinicians expressed uncertainty over the financial policies supporting the provision of EOHD and wondered whether the system was really sustainable.

The participants also noted, however, that their experience with providing EOHD motivated them to advocate for their patients. One physician compared the patients to "warriors," and another emphasized that it was important to "do the right thing."

In his editorial, Sehgal, the Duncan Neuhauser Professor of Community Health Improvement and Co-Director for the Center for Reducing Health Disparities at Case Western Reserve University in Cleveland, Ohio, calls for clinicians to advocate for policy change. "National, state, and city borders are man-made creations that often ignore cultural, historical, and geographic connections among populations. Such borders should not define the line between life and death for patients with [end-stage kidney disease]."

The study authors and Sehgal have disclosed no relevant financial relationships.

Ann Intern Med. Published online May 21, 2018. Article abstract, Editorial extract

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