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Kidneys are crucial to the human body. They remove waste and excess fluid, and when they fail, your risk of death sharply increases. Dialysis treatment is essential for you to survive.
Tom Mueller, journalist and author of Crisis of Conscience: Whistleblowing In An Age Of Fraud, continues his work covering whistleblowers with his latest book, How To Make A Killing: Blood, Death, And Dollars In American Medicine.
The book details the monopolistic nature of dialysis corporations and how clinics or treatment centers label individuals “problem patients” when they become whistleblowers and challenge their abuse, fraud, or malpractice.
As Tom recalls, he stumbled on many of the stories told in his book while working on Crisis of Conscience. “There were three major whistleblowers that blew the whistle on two major dialysis corporations, and the total settlements for those three people was something on the order of $900 million.”
I recorded a lengthy discussion with Tom that I posted to YouTube. The interview is also embedded below.
And for paid subscribers, I put together an excerpt or summary of part of the conversation.
Two companies control roughly 80 percent of patients in the United States—DaVita, which is based in Denver, Colorado, and Fresenius, which is a German company that has a U.S. subsidiary.
One of the whistleblowers who Tom profiles in his book is Carrie Brito, who was a patient at a Fresenius clinic in Kaufman, Texas. She was a forensic accountant with experience examining documents for bank fraud investigations.
Brito made secret recordings and recorded videos with her cellphone to prove the clinic was engaged in “malpractice and poor care.” She also believed that her medical charts showed the clinic had committed forgery.
During the interview, I read the following paragraphs from the third chapter, “Dialysis In America”:
Shortly after her latest dialysis sessions, her blood pressure spikes to dangerous levels. Terrified that she’s about to stroke out, she has a violent panic attack. Sobbing and stammering, she begs the clinic staff for help. Despite the acute medical danger she feels she is in, however, they don’t take her off the machine. Nor do they call 9-1-1, or alert Brito’s husband and care partner, William Sarsfield, to her condition.
Instead, she says a nurse hovering nearby tries to quiet her. Brito’s weeping, the nurse says, is disturbing the other patients in the unit.
“These assholes are trying to kill me,” Brito thinks to herself.
When she asked the staff and managers of her clinic about these problems, she says they turned on her, and began to punish her for speaking out. She claims that dialysis technicians began jamming the dialysis needles roughly into her fistula, and shouting at her to be silent when she cried out in pain. A tech cannulated her improperly and then turned on the machine at high blood-pump speed, causing internal bleeding that swelled her arm to twice its normal size and damaged her fistula—her lifeline. After one treatment, she says, the staff removed the needles and left her to bleed for a quarter hour, in full view of the other patients. They also barred her husband, William, who provided essential physical and psychological support, from entering the facility, claiming he’d made racial slurs and threatened to go out to his pickup and fetch a gun. Brito says an armed security guard began to shadow her movements in the clinic, as if to signal to everyone present that she was dangerous. Clinic staff told her friends, both patients and workers, to avoid her.
After reading this harrowing description of whistleblower retaliation, I asked Tom to comment on this practice of labeling sick people “problem patients” when they question their care.
MUELLER: Involuntary discharge is something that I ran into early and often in dialysis, and if you just stop and think about that for a second—Involuntary discharge from a lifesaving medical treatment is pretty sobering.
The first six months I was really looking into this I thought there’s got to be some other side to this. Maybe William did mention a gun. Maybe Carrie was being kinda crazy. And it was only when I started seeing many, many cases in which the playbook is basically the same that I started to say, okay, this is sort of a pattern. And the sad thing is you’re dealing with two sets of victims, as I report in my book.
You’re dealing with the patients who are sick and don’t know what’s going on and some of them are frustrated that they’re not getting better care. I know MDs, who are dialysis patients. I know nurses, who are dialysis patients. When they say, excuse me, you should wash your hands before you stick those 12 gauge needles into my arteries, they become persona non grata.
The other group of victims is the workers because they are working in an assembly line environment, very low pay in many cases, far too low staff for the number of patients. This is according to the testimony that I have gotten from many workers. They’re just overworked, and they have far too many people take care of and they’re running themselves ragged.
This is not to excuse bad behavior or to excuse the kind of treatment that Carrie says she got, but when a patient becomes anything but a passive widget on the assembly line, you’re kind of shell-shocked. You’re running from patient to patient. They’re starting to take up more of your time. There’s a natural collision course that people are set on because of the model, because of this rigorously for-profit model, which really is about metrics, about time, about patients on and off, about how many people are on your shift, how many shifts your running.
To come back to Carrie, her pattern is one that I saw again and again. She’s a forensic document examiner and was a corporate controller for awhile. She knows documents and knows when there are problems with documents. She was handed some paperwork that they said she had signed, and she looked at them and said I’ve never seen this document before. And there was her signature, identical, twice. In her view, that was robo-signed. And in her view, there was some game to increase their profits. I don’t know 100 percent whether that was true, but it was in her view, and she’s a professional.
The point is, when she pointed this stuff out that was when she became persona non grata, and the kinds of retaliation that she mentions—Being segregated away from others, having a security guard start to appear as if to signal to everybody this is a dangerous person. Don’t talk to that person. And then verbal abuse and sometimes physical abuse. She also went through her medical charts, as I describe in my book, and says she found claims of bad behavior, disruptive behavior that had been retroactively inserted into her charts to make her look like a problem patient. Basically, in her view, a paper trail to justify her eventual termination.
Then she gets what is euphemistically called a behavioral contract, which really sounds sort of Stalinistic. Be a good person. It’s not a contract at all because it’s you will do what we say or else. A contract is an exchange of rights and duties and so on, and this doesn’t sound like a contract me. Anyways, a behavioral contract after 30 days in many cases leads to involuntary discharge, and you receive a letter that says, sorry, we’re not going to treat you anymore.
Needless to say, many patients are taken back by this because this is their lifeline. This is how they live. Even more sinister in many cases that I have reported in my book, not only do they not get treatment at their facility, they’re blackballed in regional area facilities. They don’t get treatment anywhere, and that’s probably because—I’m speculating, but on good evidence. Something in their medical records, perhaps the involuntary discharge, which does appear, signals to other facilities that these people are going to be problems or they’re not worth bothering with.
I’ve had several nephrologists [doctor specializing in kidney care] confirm that discharge is a part of the package. I had one Canadian nephrologist Joanne Bargman describe a conversation she had with a very senior American nephrologist in which he said, oh yeah, you know when I have a problem patient, I get them to act out and then I can just get rid of them.
The fact is that once you are terminated from your facility, and if you are blackballed in the area, your only chance to stay alive at this point is in the emergency room. But the ER is designed for emergencies. It’s not designed for chronic treatment, regular dialysis. And again, this is one of those things where it’s nobody’s fault in particular but it produces bad outcomes.
Dialysis patients who have to dialyze in the ER—and there are a number of undocumented workers who have to do this because they don’t have any insurance—You only are treated when you’re in an emergency, when your blood levels are so toxic, so dangerous. Your fluid levels are so high that your heart is about to stop. You’re going to die. So then they treat you, and that’s typically once a week.
I sat with dialysis patients for hours and hours waiting for their blood to get bad enough. As Alonzo Plough of the Robert Wood Johnson Foundation told me, this is treating people at the precipice of death. This is not preventative care. And I had an ER doc say that, apart from the fact that it’s bad for people, it’s just a huge waste of resources. Do you know how much an ER bed costs? It should not be used for a chronic care patient. They should be in their clinics. So it’s a lose-lose situation for everybody.
Here we come back to the why of this. There are personal issues involved, clashes between workers and patients, but I have only very rarely encountered a case in which a patient was privately insured and got terminated. Because privately insured patients are a lot more valuable. Dialysis companies can charge somewhere two and ten times more to private insurers than they can to Medicare. A lot of patients and a lot of workers testified to me that it’s a two-class system. You have the privately insured patients who get the red carpet treatment and the shifts that they like, and then everybody else.
The vast majority of problem patients were people who were on Medicare or Medicaid. If you’re not financially as interesting and you asked questions or challenge your facility or their management, you can run into problems.
GOSZTOLA: Having this documentation that you’re not being treated fairly and appropriately, it would seem to empower the patient, but what it seems is the method has developed a method that disarms. So typically you would think that a patient who had this misinformation would have power much the same way that if you have certain details you might be able to convince an insurance company to lower a claim if you feel you’re being over-billed. The more information you have about your medical treatment might get them to accept that they are not being fair in what you’ve been billed. But if you don’t know that, then you’re probably going to end up paying that over-charged bill.
In this case though, the monopolistic nature of the industry has managed to effectively disarm the power of whistleblowers. The people that come forward to tell you these stories you would think would be rewarded, with them being able to save their lives. But that’s not necessarily the case because of everything [the companies] are able to do. And there’s not really anybody to save them.
MUELLER: You’ve put your finger on it. My book is full of whistleblowers because almost everybody who is speaking to me is a whistleblower in one way or another, and almost everybody who is speaking to me and have continued to speak to me after the book is really putting themselves on the line. That goes for patients who are very vulnerable. Think of it. You sit down in your chair and people are inserting these huge long needles into the fistula, which is this port under the skin of your arm.
According to Tom, in many countries, dialysis treatment is performed by “real experts” that are specialized dialysis nurses. In the U.S., a staff person may only have two or three weeks of training and then they’re jamming needles into patients.
MUELLER: I quote a letter, a kind of heartbreaking letter, of a dialysis worker, who is writing to a patient that she contributed to terminating, in discharging, saying please forgive me. It’s in broken English, and it’s clear that these people have been turned on each other. Please forgive what I did. I had to do it because I have a family to take care of, and the doctor said if I didn’t. But you know I’m leaving this message at your door around Christmastime. Just don’t tell anyone I was here.
So it’s kind of a nightmare situation where you have victims, both the patients who are risking their lives. And Carrie Brito and others told me, look, I’m telling you this story. I know what the risks are. I’m telling you this story so it won’t happen to anybody else.
But the workers are also very vulnerable, and they will be fired. And they will be blackballed if they speak out. What you said, not having recourse. My reporting suggests that both at the state and federal level the regulators are completely asleep at the switch if not captured by the industry. They come from or are going to Big Dialysis. They are typically, in the reporting that I’ve done, taking the side of the clinics trying to get rid of patients to make sure their paper trail is in order and rather than talking to the patients.
I know that I am not doing justice to certain well-principled people at the federal level. It’s called the End Stage Renal Disease (ESRD) Networks. It was setup by Congress in the late ‘70s or early ‘80s, and then at least according to my reporting, it got captured by industry. I’m sure there are some good people out there, who work in those networks, but I haven’t met one yet.
I sent out statements for comment from my book, excerpts, what I was saying about them that I wanted them to comment on. Right, give a fair chance for them to reply. I couldn’t get anyone [from ESRD Networks] on the phone. I spent two days trying to call people, and the best I got was, well, you might try this number. So if I’m a patient and I’m trying to get help urgently, I don’t know where that leads me. My sense of this is, and insiders who formerly work at the ESRD Networks, who still work there in some cases, have confirmed that it’s grossly understaffed, mismanaged, and does not do the job that it was intended to do—protect patients or be patient advocates.
So you have patients and workers, and this includes nephrologists. Some of the nephrologists who spoke to me on the record have already gotten a dressing down. I’m hoping it’s not going to be worse than that. They knew there would be repercussions, but it’s disturbing to me how rigorous those have been.
Everyone is vulnerable, and all the people who spoke to me on the record or off the record are whistleblowers. You know how I feel about whistleblowers. There’s no group of people that I have more time for, for their courage, for their clarity, and just immobility, the refusal to take the utilitarian view of life. And they are just the most amazing whistleblower group that I have ever encountered.
*For the full conversation, here's the interview.