Melissa Kaplan's
Chronic Neuroimmune Diseases
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Last updated January 1, 2014

Joanne Wong's doctor correctly figured out what was wrong with her. But he would not tell her.

Ms. Wong, a software engineer in Sunnyvale, Calif., was having abdominal pain and nausea. Her doctor told her to have a blood test, then ushered her out of his office, ignoring her when she asked what the test was for.

"The test came back, and he said I have a virus," Ms. Wong said. "He said, 'Take this medicine for two weeks.' I asked, 'What kind of virus do I have? How did I get it?' But he just said, 'Take the medicine and come back in two weeks.' "

Two weeks later, she still felt ill. "He said, 'You're fine, you're fine,' " Ms. Wong said. "I said, 'At least tell me the name of the virus.' " But, she said, "He just patted my shoulder and sent me out," telling her to return in three months for another blood test.

Perhaps, Ms. Wong said, the doctor did not want to spend the time to talk to her, or perhaps he was put off by her Chinese accent and thought she would not understand. In any event, she never returned to that doctor. When she got her medical records, she learned that she had had hepatitis A, a viral liver infection.

Ms. Wong had come across a bane of the medical profession: the difficult doctor. These doctors may be arrogant or rude, highhanded or dismissive. They drive away patients who need help, and some have been magnets for malpractice claims.

And while such doctors have always been part of medicine, medical organizations say they fear that they are increasingly common - doctors, under pressure to see more patients, are spending less and less time with each one and are replacing long discussions with laboratory tests and scans - and that most problem doctors apparently have no idea of their patients' opinions of them.

Patients usually do not confront doctors. Instead, most rant to friends or family members about their experiences or simply change doctors. But in most areas of the country, there is an abundance of patients. If a few patients leave a medical practice, plenty more can take their place, so doctors may never even know what their patients think.

"The reality is that a lot of these doctors don't have a source of objective comments," said Dr. John Freedman, the medical director for quality management at the Tufts Health Plan in Massachusetts, which includes 18,000 doctors.

But now some medical groups are taking steps to address the problem, questioning patients and going so far as to dock the pay of doctors whose patients give them poor ratings.

At the Rochester Independent Practice Association in New York, with 3,000 doctors, patients are surveyed, and their satisfaction scores can account for 20 percent of a doctor's pay. At Tufts Health Plan, 3,000 to 4,000 doctors had all or part of their bonuses withheld last year because their patients did not rate them highly, said Richard Lynch, the plan's vice president of network contracting.

In California, said Dr. Ronald Bangasser, the past president of the California Medical Association, eight major health insurers have a new program in which they divide $30 million among 35,000 physicians depending on how their patients rate them. "It could be $3,000, $4,000 or $5,000 per physician," Dr. Bangasser said. "That would get their attention."

Dr. Beth A. Lown, an assistant professor of medicine at Harvard Medical School and the immediate past president of the American Academy of Physicians and Patients, said: "This goes to the heart of medicine - the skillful enactment of communication and a truly heartfelt understanding of the patient's circumstances. And it seems to have gotten lost as doctors get involved in medical systems that prioritize speed and technology. Increasingly, people are relying on tests instead of talking to patients."

Patients say the problems come in many guises. The arrogant or dismissive doctor. The impatient doctor with his hand on the doorknob. The patronizing doctor. Or, as one young woman experienced, the doctor who is callous and judgmental.

The woman, who lives in Washington, asked not to be identified because she did not want her mother to know about her sex life. Her problem doctor was a new gynecologist she saw for a routine checkup. The doctor began the examination, inserting a speculum into the young woman's vagina.

"She asked if I was sexually active," the woman said. "I said I was. She asked if I was sexually active at this moment. I said yes."

Leaving the speculum in, and the woman with her feet in the stirrups, legs spread, the gynecologist walked to the head of the exam table and proceeded to lecture her on the perils of sexual activity outside of marriage. "I was so humiliated and so scared," the woman said. "And so embarrassed."

Other times the doctor seems indifferent.

That was the experience of Gloria Erlich, a writer who lives in Princeton, N.J., who saw a neurosurgeon for back pain. He told Mrs. Erlich she needed a myelogram, a scan of the spine that requires a spinal tap to inject dye into the spinal cord. She told him that she had had one, at his request, just a few months before and that the films should have been with her medical records. But the doctor said he could not locate them and asked her to have another one.

Months went by, with the doctor telling Mrs. Erlich he could do nothing for her without a myelogram and her saying she had had one and asking why he could not just find it. Finally, she said that perhaps she should contact a lawyer. "Within half an hour, they found it," she said. "It was irretrievable until I said the word 'lawyer.' "

"It may have been busyness," she said, "but it seemed to me a matter of indifference: why bother searching for something when the patient can just repeat the test? Indifference to the pain and risk for me, indifference to the very substantial cost of the test for Medicare." She changed doctors.

Mrs. Erlich's doctor may never learn how irritating he was. Most doctors do not, said Dr. Richard Frankel, a professor of medicine and geriatrics at Indiana University who teaches medical faculty how to communicate with patients. Even doctors who have bad experiences when they see a doctor rarely speak up, Dr. Frankel said.

"You hear their sad story," he said, referring to doctors who have been patients, "and then you ask, 'Well, did you say anything to the person who was offensive to you or treated you poorly?' Ninety-nine point nine percent of the time the answer is no."

One reason, of course, is fear of offending the doctor and getting poorer treatment from then on. But doctors who are rated by their medical groups are forced to confront the evidence, and often are asked to get help or are coerced into it.

For example, said Dr. Bangasser, doctors at his group, the Beaver Medical Group in Redlands, Calif., who get low patient satisfaction scores have been asked to shadow successful doctors to learn their ways. For other doctors, there are counseling and training sessions as well as courses, including some taught by Dr. Lown's group, to help doctors learn to listen to patients and treat them with dignity and respect.

There also are veiled threats at some of the medical groups.

"We have worked with a number of physicians in a confidential way," said Dr. Freedman, of the Tufts Health Plan. "We say, 'You appear to have dramatically low scores. We would like to understand your justification for why and explain what actions you intend to take.' "

And, he added, "if they don't make bona fide efforts to improve, we can go through a disciplinary process that can result in termination."

As for future doctors, they will at least have to show they know the basics of being nice. As of 2011, all new residents will have to exhibit empathy while examining an actor posing as a patient. The residents know they are examining an actor and that the actor will be assessing their performance, Dr. Lown said. "We are putting teeth in the need to change," she added.

A more subtle problem occurs when doctors who are generally pleasant and communicative act differently toward certain patients, affected more than they realize by their personal prejudices against particular patients, like fat people, hypochondriacs or people who complain about pain.

"If you happen to be the person they don't like, they can respond very differently than they do to most people," said Dr. Howard Beckman, the medical director of the Rochester Independent Practice Association.

Fat people say they know that problem well. It happened last summer to Tina Hedberg of Conover, Wis., who saw a doctor when a diet she was on was no longer eliciting drastic weekly weight loss. The doctor, Ms. Hedberg said, told her that she had a mental problem because she weighed 400 pounds. Ms. Hedberg was trying to commit suicide by getting so fat, the doctor informed her.

Then the doctor said Ms. Hedberg had two choices. She could be admitted to a mental institution, or, the doctor said, "I could wire your jaws shut so tight that you can't move your jaws to talk, and if you can't talk you can't eat."

Other times doctors get so busy that they seem not to understand a patient's experience, as Rori Murell discovered recently.

Ms. Murell, a retired therapist who lives in Rochester, was having back pain, so she made an appointment with an orthopedic surgeon recommended by her primary care doctor. When she arrived, a physician's assistant entered the examining room.

"He looked over some of the X-rays and said, 'I recommend spinal injections.' I said, 'I can discuss that when I meet with the doctor.' He said, 'You're not going to see the doctor.' "

The doctor, the physician's assistant explained, was busy seeing patients. "I said, 'Well, I'm a patient,' " Ms. Murell said, but she got no reply.

"I realize that doctors get really, really busy," Ms. Murell said. "But someone with a back problem is different than someone with a sniffly nose. I don't want to sound like I need to be pampered or babied or that I need sympathy. But what's fair is fair, and what's professional is professional. I'm 68 and I'm old enough to remember a time when you went to the doctor and you saw the doctor."

Doctors say they are chagrined when they hear such stories. But, they say, it can be hard for them to know how a doctor treats a typical patient when they themselves often are treated with kid gloves.

"You'll occasionally get a patient who comes from another physician and says something bad about that doctor, but it's hard to know whether they're a complaining patient or the doctor is really bad," said Dr. Robert Swerlick, a dermatologist at Emory University.

Some patients say they have to rely on each other's experience to know which doctors to seek out and which to avoid. The Council on Size and Weight Discrimination, a nonprofit organization, publishes lists of fat-friendly doctors on its Web site. And after her experience with the doctor who would not tell her her diagnosis, Joanne Wong helped found a Web site, RateMDs.com, where patients can rate doctors.

But, said Dr. Swerlick, such ratings are not exactly representative samplings.

They also infuriate doctors, who, Dr. Beckman says, "think these things are capricious and stupid."

It is harder to argue with the methods being used by medical groups, like the Tufts Health Plan and the Rochester Independent Practice Association, that are employing scientific methods to survey satisfaction.

Such practices, Dr. Beckman says, are becoming increasingly common in health maintenance and preferred provider groups that are starting to pay doctors according to their performance. Purchasers of insurance plans are demanding it, he added.

And, he says, there is a common thread to difficult doctors: most have problems talking to, or listening to, patients.

"What often happens," Dr. Beckman said, "is that the patient has something they want to tell the doctor but they're not allowed because of the doctor's style to say what they want to say." So the doctor does most of the talking, often alienating patients.

Dr. Beckman teaches doctors simple ways to let patients tell their stories and to show empathy by responding to a patient's emotionally charged comments. For example, he said, "A patient comes in and says to the doctor, 'I stopped smoking.'" Instead of saying, "That's terrific," the doctor will say something like, "How's your weight?"

Dr. Beckman said a doctor recently called him, stung by his low scores and asking how it could be that his patients did not like him.

"We looked at his survey results and the area where he was low was the question of, 'Did the doctor spend enough time with you?'" Dr. Beckman said. "I told him a bit about how a person feels that enough time is spent. You have to uncover the heart of their problems."

Of course, Dr. Beckman said, "everyone thinks they're listening" to patients. But one method does work, he told the doctor. "You use continuers. As you're working with people, you say 'uh huh' three times."

He gave an example: "The patient says, 'I've been having chest pains.' " Instead of jumping in and suggesting tests, the doctor says, "Uh huh." The patient says, "I've also been having headaches." The doctor says, "Uh huh." So the patient says: "It all started when my brother died of an aneurysm in the brain. And I wonder if it's related."

The doctor, Dr. Beckman said, "looked at me like I'm a little nuts," but agreed to try. Later he returned, elated.

Dr. Beckman recalled him saying: "I can't believe how different it is. I hear things I don't usually hear."

"That's terrific," Dr. Beckman said.

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