COMMENTARY

Kidney Patients Left in the Wind: A Heartfelt Story

Lynda Szczech, MD, MSE

Disclosures

March 10, 2017

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Hello. My name is Lynda Szczech. I am a practicing nephrologist in Durham, North Carolina. I really enjoy doing these viewpoints, both the written ones and the video ones. I like to pick articles that I think have immediate clinical application to people's practice.

This particular article was a little bit hard for me—not because it is difficult methodologically (it is actually quite simple and elegant), but because it is quite sobering in forcing me to look at the impact of emergent hemodialysis as access to care in our undocumented immigrants.

Did you ever wonder how someone who is undocumented gets access to the end-stage renal disease (ESRD) program that is largely funded by Medicare and Medicaid? Approximatively 6400 undocumented immigrants who have ESRD and live in the United States are facing that right now. States have devised two ways to enable these patients to access dialysis through the Emergency Medicaid Program (EMP). California and New York use the program to provide regularly scheduled dialysis. Many other states (including Colorado, which is highlighted in this particular study) require patients to present for emergent hemodialysis, being critically ill to justify their need for dialysis, to then gain access to hemodialysis and have it reimbursed though the EMP.

The title of the article, before I get into it anymore, is "The Illness Experience of Undocumented Immigrants with End-stage Renal Disease." It was published in JAMA in February 2017. It describes 20 patients in one center in Colorado who receive emergent hemodialysis approximatively every week.

The two methods of receiving dialysis (either regularly scheduled or emergency hemodialysis) can be looked at in a number of different ways. From a purely financial perspective, a study conducted in Texas[1] found, not surprisingly, that emergent hemodialysis was 3.7 times more expensive than regularly scheduled dialysis. That fact is interesting to note.

As we get into this particular study, I would like to pause for a moment. We live in a very polarized time politically where there are a lot of emotionally charged arguments about topics such as immigration. I would like to focus us now to just looking at the patient's experience. Later, we can decide what to do as a renal community and lobby legislation for the next steps. Right now, simply listen to what these patients are experiencing, because I think you will find it as sobering as I did.

 
Simply listen to what these patients are experiencing, because I think you will find it as sobering as I did.
 

This particular center in Colorado provides emergent dialysis to between 55 and 60 patients per month. This study took a close look at 20 of those patients, doing a semi-structured interview to understand the effect of this kind of access to healthcare on themselves, their attitudes, and their families.

What is emergent dialysis? To receive emergent dialysis, the patient has to present at a level of critical illness that is defined as having a potassium level > 5.2 mmol/L, a bicarbonate level < 15 mEq/L, and an oxygen saturation of < 90%, with uremic symptoms or severe shortness of breath. And a dialysis chair has to be available. If a patient satisfies this definition of critical illness, they are dialyzed, admitted overnight, receive a second dialysis session in the morning, and then are discharged. The patient repeats this cycle 6 or 7 days later, trying to become critically ill again to justify the need for more dialysis.

Pushing Symptom Boundaries, Eating Oranges and Bananas

For this study, patients were asked to describe the circumstances of their diagnosis, the effect of the diagnosis on their daily lives, and the consequences of emergent-only dialysis on themselves and their families. Of the first 20 patients who were approached, all agreed to be interviewed. All were Latino with a mean age of 51.4 years, half were men and half were women, 50% percent were employed, and 70% had less than a high school education. Interestingly, the mean length of time in the United States prior to starting dialysis and before ESRD was 15.4 years—quite a long time! The mean time that patients were on dialysis before this interview was 51 months, again a long time.

The interview focused on four major themes related to the patients' illness experience. Patients were asked about how distressing the symptom burden and the unpredictable access to emergent-only dialysis were; the death anxiety experience associated with weekly episodes of life-threatening illness; family and social consequences of accommodating emergent-only hemodialysis; and, finally, their perceptions of the healthcare system.

 
These are real people describing real fear and the real impact of emergent-only dialysis on their lives and their families' lives.
 

I encourage everyone to go to the JAMA website, download this paper, and look at Table 2. It contains quotes from the patients and their interviews. These are real people describing real fear and the real impact of emergent-only dialysis on their lives and their families' lives. The descriptions of symptom burden are quite dramatic. These patients describe the feeling of drowning every week. They talk about what it is like to be coded [resuscitated] repeatedly, and the behaviors they engage in, such as eating oranges and bananas outside the emergency room (ER) prior to going in with their shortness-of-breath symptoms, just to make sure they reach the definition of being critically ill by having a high enough potassium level.

The effect of variable access to hemodialysis is really quite shocking. It is pushing patients to do more to their bodies, to be the most severely affected of all the people in the ER so they can qualify for the one dialysis chair, if there is only one available. It forces them to wait until their symptoms, due to volume overload, are quite extreme. Logically, the more extreme the symptoms, the higher the risk for the patient. The healthcare system appears to reward those who push the boundaries of their symptoms to what can be maximally tolerated.

 
The healthcare system appears to reward those who push the boundaries of their symptoms to what can be maximally tolerated.
 

It should not be surprising to anyone that the effect of a weekly hospital admission greatly impedes the ability to hold down a job. Patients describe not only the effects of their symptoms and their hospitalizations on themselves in terms of loneliness and missing their families, but also the effect of the stress on their families in terms of sadness and mental health issues.

Near-Death Should Not Be Commonplace

The paper describes the near-death experience as relatively commonplace for these patients. One young woman reports having chronic chest pain that she believes is related to broken ribs caused by numerous attempts at cardiopulmonary resuscitation, when she pushed her symptoms just a bit too far. Another patient describes how her son will not leave her side when she is at home, for fear that he may need to call an ambulance or come to her aid.

This fear of dying causes a growing anxiety in the patients themselves. However, they do describe building very comforting relationships with each other due to their shared experience, language, and culture. They bond with people who are in similar extreme circumstances. They also describe the devastation when one of the other patients (one of their friends) dies, and how much deep distress it causes them.

The patients are quite frank about what effect the fear of dying each week has on their families. They describe their children as depressed. Two patients stated that their children had attempted suicide. Many preemptively say goodbye to their families every week in case they do not come back, and some are very reluctant to share new medical information with their families.

In spite of this, they express extreme gratitude for the practitioners who provide their care and have developed great relationships with them. They describe seeing their healthcare providers at the funerals of other undocumented immigrants who received dialysis. They talk about the irony of not being able to receive a transplant because they lack insurance, but are able to, in theory, donate their organs when they die (if they have the heart) by marking it on their driver's license.

As a renal community, we need to be aware of these patients' experience. We need to look at this issue through their eyes and come up with our own conclusions about how to move forward.

This is the part of the viewpoint where I should provide some summary and steps forwards. This is a very controversial topic in terms of both immigration and healthcare, two very hot-button items in a very divided country.

I am not going to take this viewpoint in that direction and say how this should affect policy, though I think, as a renal community, we need to be aware of these patients' experience. We need to look at this issue through their eyes and come up with our own conclusions about how to move forward. Is this the quality of care we think is appropriate? If it is, we take one path. If not, then we take another. I have tried to be very neutral in how I present this, but I am hoping that you can see the look on my face and the tone of my voice, and understand how sobering I find this and how I would love for this traumatic weekly event to not be a part of so many people's lives.

Please leave a comment in the comment section. Let us try to discuss this in a way that is valuable as a renal community. We can learn from each other. Not one of us has all of the answers, but we are all motivated by the same deep-seated desire to make this world a better place than we found it.

With that, I hope you enjoyed my discussion of this paper, and I encourage you to read it and comment. Have a wonderful day.

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