Q&A with Jeanne Bouillon: Turning anger into action, changing state law on doctor discipline
Jeanne Bouillon has a tenacity that most patients lack. When you are sick, you don't feel like fighting. And when you have been injured by a physician, you can feel deeply violated and want to just cover your head and hide.
That's how Bouillon of Gillespie, Ill., felt when she underwent a series of procedures in 1995 that sent her to the hospital bleeding severely from her uterus. She had been told by her doctor that she had cancer, but, as she later learned, she had been pregnant. The surgical procedures she underwent left her with scarring and a lot of pain. At first she didn't know what to do. So she hid. Then she started researching the doctor, Dr. Joseph Dickstein. She found that he had been sued several times for malpractice, in cases that seemed similar to her own experience. Bouillon chose not to sue. Instead she complained to the medical board, and she started to band together with other patients to change Illinois state law.
These patients had a radical notion. They thought that everyone should be able to easily find information about a doctor's malpractice history. What patient has the time or the money to go from courthouse to courthouse around the state looking up physicians? Even if they do find a malpractice judgment or settlement, in many cases, the financial terms have been kept secret. Bouillon wanted to change that, and so she spent her own money and took her own time to lobby the state General Assembly.
In 2002, she testified before the state House for a bill called the Patient Right-to-Know Act. But the bill was doomed. Both the huge doctors' lobby, which is known as the Illinois Medical Society, and the Illinois Department of Professional Regulation, which would have been forced to implement the bill, forcefully opposed it.
Still, Bouillon kept making her case known at the state and federal level at any hearing that would have her and even right outside the hospitals where Dickstein was practicing. In 2005, the General Assembly passed a bill that capped malpractice payments against physicians. State Rep. Mary Flowers amended the bill to finally gave consumers at least some information about malpractice claims against physicians, albeit only for five years.
The malpractice cap was eventually struck down by the Illinois Supreme Court and, because the General Assembly had bound the patient protections to the doctor protections, the malpractice information went away, too.
Antidote wanted to talk with Bouillon about all of this. I tracked her down at her stained-glass business, Say It With Glass, in Gillespie. The first part of the interview is below. It has been edited for space and clarity.
Q: What made you want to speak up about your experience?
A: If I had known this doctor's past history, there was no way I would have gone to him. He was one of the doctors in my insurance plan. I didn't know that he had been sued or that doctors had stopped referring patients to him. Other doctors knew his history and were doing their best to have their patients avoid him, but that didn't stop him from practicing. While my case was being investigated by the state Department of Professional Regulation, he seriously injured more women.
Q: What happened in your case?
A: He made me believing that I had cancer, so I was going through all of the things that someone would go through thinking that they had cancer and that they might die from it. But I didn't have any signs of cancer.
Q: What did you have?
A: I was pregnant, and I didn't know it. He did an abortion type procedure and then I had two surgeries at St. John's Mercy Medical Center to take care of injuries that had happened because of the abortion. At one point he left me to hemorrhage for a week and a half. It was just horrendous.
Q: Were you married at the time?
A: I was. I was 36 at the time, and I'm 51 now. We've been married for 32 years. My husband couldn't understand how this was all happening. How could a pregnancy be diagnosed as cancer and then lead to me having to be in and out of the hospital? He never wanted to admit what had gone wrong. Luckily, I was a strong healthy woman and able to eventually recover.
Q: How were you able to recover?
A: There was a doctor in St. Louis who saved my life down after this happened. When she saw me, there were puncture holes in my bladder and my uterus had been lacerated. She ended up putting me on the right medications, and I had two surgeries to have a bunch of scar tissue removed.
Q: How are you doing now?
A: I'm fine now. Just mean.
Q: Did you ever hear from that doctor in St. Louis?
A: She told me to keep fighting, and there should be more people like me.
Q: You didn't sue, but you did complain to the state licensing agency. Why one and not the other?
A: That's true; I was injured but did not sue. This was never about money for me. I could have sued, but really, this was about right and wrong and other people being needlessly injured. I wanted this to be on his record for other women to see.
Q: When you complained to the state, what did the investigators tell you?
A: They kept telling me that he was a good doctor with a clean record. I figured out that to really see his record you had to go to the individual courthouses in each county where he worked. So I did that. I looked up his history and even made a map showing all the places he had been. He was able to leave Montgomery County and go down to southern Illinois where he started to practice in the college community.
Q: But this is all public information, right?
A: Even though it's all public information, most of the public would never know about it because it's buried in the courthouses. You have to be a hound dog and sniff around to find out what's going on. At the same time, you're injured or on medication or just getting out of the hospital. You don't have the energy to do all this work.
Q: So how did you find the energy and the time to do it?
A: I just couldn't believe it was so difficult to find out about your doctor's true professional history. That's what kept me going. You can find out more about your roofer and the used car you are going to buy than you can about your doctor.
Monday: How Bouillon took her fight to the capitol
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Q&A with Mary Flowers, Part 1: Bringing medical mistakes out of the shadows
Q&A with Mary Flowers Part 2: Adding "sorry" to the medical lexicon
Chicago's Buried Bodies, Part 1: Illinois regulators make backgrounding doctors near-impossible
Chicago's Buried Bodies, Part 2: Millions in malpractice judgments amount to nothing in Illinois
Chicago's Buried Bodies, Part 3: The doctor discipline ball bounces to the legislative court