Read an Excerpt
Chapter One
How to Be a "Bad Patient"
You probably know Evan Handler as Harry Goldenblatt, Charlotte York's adorable, bald husband on Sex and the City, or as Charlie Runkle, the agent for David Duchovny's character on Californication. What you probably don't know is that Evan Handler was a "bad patient"-a patient so bad doctors dreaded him and nurses cursed him. But Handler swears that being a bad patient saved his life.
When Handler was diagnosed with leukemia at the age of twenty-three, his doctors told him he probably wouldn't survive, and so Handler eventually left those doctors and found others across the country who were more optimistic. When Handler was undergoing chemotherapy, a doctor yelled at him for calling about a fever because the fever was "only" 100 degrees. Handler fired him. "Doctors told me I would be endangering my care if I switched doctors, but that advice was criminal," he told me. He continued this "bad patient" behavior even after he recovered from cancer. "Recently I needed to have something in my mouth looked at," Handler told me. "The doctor performed a biopsy without lidocaine-just put a blade in my mouth and cut without telling me. I never went back, and I wrote him a three-page letter. You should leave a bad doctor and, if you have the energy, tell him why you left."
Several times in the hospital when he was in his twenties, nurses tried to give Handler a medication that his doctor had absolutely forbidden, and he had to argue with the nurses each time to stop them from administering the dangerous drug. Once, a nurse gave him an intravenous medicine that was meant for another patient-the other patient's name was right there on the bag-and Handler was the one to notice the mistake. When hospital workers didn't wear gloves and gowns- the proper procedure when taking care of patients whose immune system has been zapped into nothingness-he told them to suit up. When doctors told Handler it would take days to replace an infected catheter, he fought for it to be done right away.
Handler took being a "bad patient" to new levels. For example, he became exasperated when one lab took a long time to process blood tests, delaying his physician's ability to prescribe the right treatments, and so he found a different lab that did the job more expeditiously. The doctor's orders, however, were for the first lab, not the second, so Handler became what he described as "a criminal of sorts" by forging his doctor's signature on authorization slips. I asked him if he was afraid he'd get caught. "Nothing bad is going to happen to you if you don't do exactly as you're told," he answered. "They weren't going to put me in jail. I worried about getting caught only because then I wouldn't be able to do it anymore."
Handler says that he survived cancer, ten hospitalizations, multiple rounds of chemotherapy, and one life-threatening infection after another by being a "bad patient." "The irony of being a 'bad' patient is that they actually do better for themselves than 'good' patients," he told me. In his book Time on Fire he wrote, "I learned that I must always remain in control, double-check everyone's work, and trust no one completely. I must have been sheer hell to be around. But I know that my cantankerousness saved my life on several occasions." When he was too sick to fight for himself, his girlfriend stepped in. "I was his protector for much of the time in the hospital," Jackie Reingold, his former girlfriend, told The New York Times. "We stood up for our rights and our dignity. So we were yelled at a lot by nurses." Handler says he knows some people aren't lucky enough to have an advocate by their side. "You wonder how many people die from illnesses because their strength to keep up vigilance runs out?"
As the senior medical correspondent for CNN, every week since July 2007 I've written a column for cnn.com called The Empowered Patient. In my column I write about people like
Evan Handler-people who have struggled with misdiagnoses and rushed doctors, with insurance companies that refuse to pay up, with medication mistakes and medical neglect. When I first started the column, I wasn't sure stories like Evan Handler's would resonate with the general public. After all, most people, thank goodness, never get a horrible disease like cancer, so they never get a chance (thank goodness again) to experience the shortfalls of our current medical system. But week after week I've proved myself wrong. The comments in the Sound Off sections under my weekly articles clearly show that Americans are mad as hell about their health care. "I barely get to see my doctor, and when I do I wait two hours for ten minutes of rapid discussion about my health," one reader wrote. "My HEALTH. I spend more time with my auto mechanic." From another: "I can't think of any other profession where the ones paying for the services are treated with so little respect." A third wrote, "The doctor gave us 22 seconds (I timed it) of his time and dismissed us."
Many readers have recounted horror stories about doctors who missed their cancer, pharmacies that gave them someone else's prescription, medical records that were confused with someone else's, surgeons who nearly operated on the wrong side of the body, and even a surgeon who performed an operation that was meant for someone else. (The patient realized the mistake when a nurse called him by the wrong name.) Readers were quite direct about their dissatisfaction. "Doctors need to get over themselves," "Doctors don't care and are a waste of money," "Doctors think they are gods," and "Doctors are generally idiots" are just some of the comments I've received.
Often readers resort to sarcasm, as in this comment to doctors: "Awww, your malpractice insurance is SO high? I bet you cry all the way home in your Mercedes to your $300,000 home." I'm sure some of these readers are just malcontents, but if even a fraction of these patients are describing real situations and real misdiagnoses and real medical errors there's something very seriously wrong with our system, because it's a system where you lose if you're good.
You Know You're a "Good" Patient When...
1. You worry about what your doctor thinks of you. 2. You worry about insulting your doctor. 3. You worry about sounding stupid in front of your doctor. 4. You think repeatedly about leaving your doctor and finding a new one, but you don't. 5. You're too scared to tell your doctor you'd like to get a second opinion. 6. You stick with a doctor who's been treating you for a long time for the same problem, and you're not getting better. If you took your car to the mechanic repeatedly and the car was still broken, would you stay with that mechanic? 7. When you don't get satisfying answers to your questions, you stop asking.
Barbara and Stephanie: The Danger of Being a "Good" Patient
Being a "bad" patient is crucial to mastering the skills I teach in this book. Many of us (and I include myself in this group) have a very hard time being bad. It involves exercising a certain level of mistrust we don't usually exercise in our regular lives. (Even the president of the United States, a savvy man, presumably, has indicated an unquestioning trust in doctors. "The fact is Americans, and I include myself and Michelle and our kids in this, we just do what you tell us to do," Barack Obama told a gathering of the members of the American Medical Association in 2009. "That's what we do. We listen to you. We trust you.") Being a "bad" patient also involves a level of aggressiveness-openly questioning doctors, being in-your-face with nurses-that's pretty foreign to me; it's just not the way I operate. After interviewing hundreds of patients over the years, I've discovered that many people feel this way.
That's why I wish I could have introduced Evan Handler to Barbara Robbins ten years ago. Barbara could have used a dose of Handler's bad- patient-ness when her daughter Stephanie turned thirteen and started losing weight dramatically. Every time Stephanie ate, she had cramps and bloody diarrhea. Consuming just a morsel of food sent her running to the bathroom; the need came urgently and without warning. To avoid the pain, not to mention the embarrassment, Stephanie ate as little as possible. Barbara took Stephanie to a gastroenterologist, who diagnosed irritable bowel syndrome, and for the next eight years Stephanie tried one drug after another. Some worked better than others, but still, by the time she reached high school Stephanie's weight had dipped to 113 pounds-and she's six feet tall. Her illness ruled her life. She couldn't attend events like high school football games, because the bathroom was too far away from the stands. She even left a college she loved because to go there she had to take the elevated train that runs through Chicago and there were no toilets. But through all this, Barbara never questioned the doctor's diagnosis or treatment plan. "I figured he knew best," she said. "Up until that point, I'd only had good experiences with doctors, so I had no reason to doubt his judgment. I figured the doctor must know more than I did."
In the end, a crisis finally opened Barbara's eyes. When Stephanie was around twenty-three, the gastroenterologist prescribed yet another new drug for her cramps and diarrhea. Stephanie very quickly spiked a high fever and in six hours had twenty-six bloody bowel movements. Barbara rushed her daughter to the hospital, where the gastroenterologist immediately took Stephanie off the new drug. Stephanie's fever went down, and the bloody diarrhea stopped. Barbara was relieved. Then the doctor did a curious thing. He put Stephanie back on the drug, and the fever and diarrhea returned. When Barbara asked why he'd done that, the gastroenterologist asserted that the drug couldn't possibly be causing the problems, since the medical literature contained no reports that this drug had those particular side effects.
Barbara was dumbfounded. She was no doctor, but she knew what she was seeing with her own eyes. On the drug her daughter was extremely ill, and off the drug she was better. Back on the drug, the symptoms returned. Yet the doctor refused to admit that a drug he'd prescribed could be making Stephanie sick. At first, Barbara didn't say anything. "It was like my tongue was bolted to the bottom of my mouth, and I couldn't get the words out," she told me. "I didn't want to offend him. I was paralyzed." But then something struck her. "Right there, at that very moment in my daughter's hospital room, it hit me that this doctor was wrong, and that there was a good chance he'd been wrong from the very beginning," Barbara recalled. "I told him I was taking Stephanie to the University of Chicago to get a second opinion. He had a cow. He was so angry he was shaking. He said I was overreacting and he hadn't finished going through all the different drug regimens yet, that there were still more drugs to try. I said, 'We've been trying these drugs for ten years and they're not working. Do you expect my daughter to continue to suffer?' That's when he walked out."
Four years later, Barbara can still remember the sound of the door slamming behind the doctor as he stormed out of her daughter's hospital room. From that moment on-from the moment she learned not to trust doctors implicitly-everything fell into place. The surgeon at the University of Chicago said that Stephanie had never had IBS; she actually had ulcerative colitis, an inflammation of the lining of the large intestine and the rectum. Other doctors agreed with his diagnosis, and so the surgeon removed her colon, which is sometimes done in severe cases of ulcerative colitis. Once she recovered from complications of the surgery, she gained five pounds in one month. Today she weighs 160 pounds, a healthy weight for her six-foot frame. Stephanie suffered needlessly for ten years. It didn't have to happen. If her mother had been a "bad" patient, she could have been treated successfully at thirteen instead of twenty-three.
What the Studies Say
You go to the doctor's office for a test. You're told that the doctor will get back to you in a few days with the results, but a week later you haven't heard anything. If you're a "good" patient, you assume the doctor knows what she's doing and everything's fine. This would be a very dangerous assumption to make. A 2009 study by doctors at Weill Cornell Medical College in New York found that more than 7 percent of the time doctors failed to inform patients when they've had an abnormal test result. This means that for every fourteen abnormal tests you have, your doctor's office will fail to inform you about results for one of them. We're not talking about minor tests, but about tests like mammograms and colonoscopies, which can save your life.
A "bad" patient wins in this situation, because she badgers the doctor's office for results instead of figuring that no news is good news. Here's another case where the "bad" patient wins: when discharging a patient from the hospital, doctors and nurses, who are often in a rush these days, sometimes fail to give patients complete instructions on how to care for themselves at home. If you're a "good" patient, you nod your head and don't ask too many questions because you pick up on the doctor's or nurse's body language that he wants to hightail it over to the next patient. The "bad" patient keeps asking questions until she understands absolutely everything, even if the doctor or the nurse is visibly annoyed. The payoff for doing this is big: a study published by the Agency for Healthcare Research and Quality found that patients who clearly understood their discharge instructions were 30 percent less likely to be readmitted to the hospital or visit the emergency department. Being a "bad" patient can keep you from winding up back in the hospital.
Why You Need to Be a Bad Girl
Please forgive me a gross generalization here: I think women have an especially hard time being "bad" patients. I think too many of us want to be good girls in every situation, including at the doctor's office. Dr. Christiane Northrup, the author of Women's Bodies, Women's Wisdom: Creating Physical and Emotional Health and Healing, agrees. "There are literally hundreds of situations in which a woman's gut intuition is spot-on, but she talks herself out of it so as not to make waves," Northrup tells me. "We women are suckers for wanting to be loved." As we saw with Barbara, who overly trusted her daughter's doctor, it doesn't matter how many degrees you have. "Even very well-educated women sometimes freeze up and don't speak up," Northrup says.
If you think you're that good girl, then it's especially important that you not go it alone. "Always take someone with you who will ask the questions you are afraid to ask," Northrup advises.
