November 15, 2000

Medical studies suggest that when it comes to sharing information with you about your health, your doctor may be the strong, silent type.

INTELIHEALTH FEATURE -

Kathleen Sullivan says she lost seven years because doctors treating her arthritis didn't listen to her.

"They wouldn't believe how much pain I was in," says Sullivan, 53, who lives on Bainbridge Island in Puget Sound near Seattle. "I couldn't get out of bed a lot of days. We had to have cooks. I barely got to my son's graduation, and I barely got to my father's funeral. It was just a nightmare."

Sullivan saw six arthritis specialists in seven years, each of them leaving her feeling like an item on a factory assembly line. Several medications she tried didn't work well, but doctors told her she had no other choices. "One time, I was sitting in the examination room and I heard the doctor talking about his golf game with his buddy, then he came in and whizzed through me real fast," Sullivan says.

Her experience is not unique, according to researchers at the University of Washington. The researchers taped 1,059 encounters between patients and doctors and found that caregivers provided patients with enough information about available procedures, medications and other treatments to make a fully informed choice in only one in 10 medical decisions.

"Primary care physicians frequently made decisions without discussing the intervention with the patient or seeking their involvement," the researchers reported in the Dec. 22, 1999, issue of the Journal of the American Medical Association.

For instance, the doctors studied often failed to discuss possible side effects of medications they were prescribing or give patients possible alternatives. Even when prescribing treatments or diagnostic procedures, doctors usually didn't supply a reason or explanation. Rather than being specific, a doctor might say, "I'd like to check some blood tests. Here's the slip to take to the lab." A more informative approach would be: "I think we should check your thyroid level to see if that is causing your fatigue. Does that seem reasonable?"

Of course, not all patients want that level of detail, says Daniel Ford, M.D., an associate professor of internal medicine in the Johns Hopkins University School of Medicine. He believes the study would have been more informative if the researchers had collected data about patient satisfaction with the information they received. "There is just a wide variety in how people attack or deal with their health problems," says Dr. Ford.

Age may play a factor. Older doctors may involve patients less in decisions, and older patients may want their doctors to make decisions without involving them, says Dr. Ford. Even many medical students and resident doctors treated by Dr. Ford seem surprisingly uninterested in learning more about their problems, he adds.

Finding The Right Match

But if you do want more information, what can you do? One key is to decide what kind of doctor-patient relationship you want to have. A patient who likes to ask a lot of questions and make decisions about his or her treatment will want a doctor who is willing to give that kind of attention, says Dr. Ford. Patients who feel confused or overwhelmed by too much information may want another type of doctor.

If you want a lot of information, Dr. Ford suggests that you watch how a doctor reacts when you ask questions or say you want another opinion. You can also ask a doctor specific questions during the first visit to try to find out more about the doctor's personality and ways of dealing with patients. For example, ask when the doctor would recommend a second opinion to determine whether he or she is comfortable with other points of view. Ask how the doctor educates patients about medications and diseases. Or ask, "If I had a choice between treatments, how would we work together to make a decision?"

Some patients may feel uncomfortable asking doctors such questions, says Dr. Ford. But if the doctor reacts poorly to your questions, he or she may be a bad choice for you, and in the long run, the match may be a poor one. Unfortunately, the only foolproof way to find the right fit is trial and error.

That's what Sullivan found out after seven long years.

On the advice of a neighbor, Sullivan visited a primary care doctor on Bainbridge Island. "For the first time in a long time, I felt like someone was listening," she says. He sent her to specialists, read the specialists' reports and began to piece together the puzzle of Sullivan's pain.

The primary care doctor determined that Sullivan was anemic because her body had trouble absorbing iron. He weaned her off the methadone she was taking for pain and put her on a slow-release morphine that worked for longer periods. She has had to change arthritis medications a few times, but Sullivan says the difference between these changes and the ones made by other doctors is that her new doctor monitors her more closely, sees her immediately when she is in pain and works harder at adjusting medications to help alleviate her symptoms.

"He didn't turn me around overnight like a miracle, but gradually he got me back," says Sullivan, who once again is living an active life. "I still have arthritis, but I'm going into Seattle this afternoon, I got my garden back, I can go to the grocery store. I have a life."

Sullivan says she would have searched harder for a better doctor early in the treatment of her disease if she knew one was out there. But she had rarely been sick and rarely dealt with doctors, so she thought the way the other doctors treated her was normal.

Now, she advises others "to just muster up enough courage and strength to just keep trying. Go look for that doctor. Ask everyone you know."