Are You and Your Patient on the Same Information Wavelength? Part 2

Dr Alper is Clinical Professor of Medicine, University of California, San Francisco, and Visiting Scholar, Hoover Institution, Stanford University, Calif.

The patient has thrust a packet of Internet reprints at you, and you've asked what, in particular, is the principal question that needs to be answered. A specific response may serve to sharply limit the scope of the discussion and increase the odds that it will be productive. The time saved may also provide an opportunity to offer perspective on study results that have been widely reported and treatments that are being heavily promoted.

I must admit that I cringe at some of the advice that encourages consumer-directed healthcare, especially in the information domain. "Check the problem out yourself and then go over it with your doctor" is typical. Although I do like informed patients, and I think it helps in their care, I also have visions of being overwhelmed.

The surprising thing is that abuse by unreasonable assaults on my time and good humor actually happen a lot less than I feared. Considering that "consumerism" is often encouraged as a sales tactic (eg, the TV drug ad that also recommends, "Discuss this with your doctor"), this may be a tribute to our patients' good sense. Moreover, a few patients have always come in seeming to want an abstract discussion of, say, the prognosis of a disease or the efficacy of a treatment they'd heard about. The only difference is that they now have documentation.

My response is not all that different in either situation. There obviously isn't time for an abstract discussion of large amounts of medical information. Besides, our principal duty (and value) to patients lies in not taking our eye off the ball, which in this case means basing the diagnosis and treatment on the unique features of each individual's case. We actually owe that to our patients. They, in turn, owe us the opportunity to make sense of their problems after first unstintingly providing us with the details.

I generally say something to that effect. But although I believe that I'm not a librarian and that I'm worth more to my patients as a doctor than as a professor, my office is nevertheless located on the fringe of Silicon Valley. So I'm likely to confront the information question head-on. When the patient's recounting of symptoms has petered out, I inquire (with a smile), "And after checking the Internet, you've concluded??" It is then that the reprints are most likely to appear, as they probably would throughout the country.

For every patient who challenges us with information for which they want our help in interpreting, I suspect there are several who never let on that they'd tried to learn more "behind our backs." Lord knows what fantasies of retribution and revenge on our part underlie such reluctance. (The schizophrenia of our times even allows vociferous consumerism and doctor bashing to coexist with an unwillingness to offend the doctor.) Perhaps there are some of us who demand total trust and who cannot tolerate any questioning of our authority, but I suspect the number is far smaller than imagined and that, in any case, such an attitude will be difficult to sustain in the "information age."

Of course, patients who have written down their questions and prioritized them go right to the top of my own "hit parade" list. New patients with complicated histories who come in with a neatly typed outline of important personal and family medical data fill me with joy. The flow of information is indeed a 2-way street, and comfort in exchanging information is a key factor in creating a true therapeutic alliance. Unfortunately, obstacles to communication don't only come from patients.

Medical training has not encouraged us to level with patients, making it easier for them to consider us superhuman?with negative consequences for both. I've been called at 4:00 AM and asked if I was answering from the office. Once, when I apologized for being late because my dentist had kept me longer than planned, the patient seemed truly shocked to learn that her doctor might ever need a dentist.

Patients should be encouraged to put themselves in the shoes of the doctor when it comes to time-consuming discussions, such as the review of outside information. They would do well to know the following facts:

1. Doctors have a problem with scheduled time. No patient likes to be kept waiting; that includes the patient who has the next appointment. It may be necessary to come back to adequately address your concern if stretching the schedule isn't possible.

2. Doctors are not intransigent, but we do have good reason for skepticism about new information and, especially, miracle cures. Much, perhaps most, that is new does not pan out. So don't be surprised if the doctor exercises caution in accepting promising new leads that are not conclusively proven. We've been burned before.

3. Doctors, particularly primary care doctors, have a pay problem: The more complex the medical problem, and the more time it takes to deal with it, the lower our rate of pay.

Using a relative value system, Medicare and virtually all insurance carriers discount pay rates for visits that last more than 5 minutes. Unfortunately, office expenses stay constant, somewhere in the vicinity of 70% of all money earned, and frequently $200 per hour for internists. It's maddening to try to give patients all that they want and still make office economics work. Among professionals, only doctors are expected to work in such an irrational way.

JAMA

There's more. Studies show that doctors interrupt patients after 23 seconds (. 1999; 281:283-287). It can be annoying, but it is to see whether symptoms fit a pattern and to avoid being led astray diagnostically. Patients can also be led astray when they research symptoms and diseases on the Internet. One engineer I treated was seriously (and comically) misled. He thought he had sexual problems caused by a pituitary tumor, when the real problem turned out to be daily marijuana smoking and the fact that he didn't really like his girlfriend.

Still, patients can sometimes hit a diagnostic home run by researching their symptoms. They can often become quite knowledgeable about diseases, and that can be valuable in understanding and managing chronic illnesses. But there is a difference between "book knowledge" and being a physician. Lawyers can become quite expert in the literature that covers an area that is the subject of litigation. But despite their knowledge, nobody would go to those lawyers for medical care.

Clinical experience provides perspective. Benefits and risks must both be kept in mind whenever considering tests or treatments. Likewise, it's essential to understand the meaning of Bayes' theorem on prior probability. It tells us that a positive test is more likely to be a false-positive when the disease being tested for is unlikely in the first place. That's why diagnostic fishing expeditions get people into trouble.

I told all these things to the audience at the Stanford Health Library during a lecture on getting patients and physicians on the same information wavelength. As I spoke, troubled listeners explained themselves. It seems that the lecture unmasked bigger problems than just finding the best medical websites.

An older woman's time on the Internet convinced her that her husband needed an endocrine consultation within the Kaiser Permanente system to better manage his diabetes, only she didn't know whom to ask or how. Another woman, who was in a wheelchair, wanted to know why "the neurologist doesn't go into detail about my multiple sclerosis." A man who was shoeless and seated in the lotus position felt extremely uneasy about broaching his interest in herbal medicine to his physician.

I answered their questions and made suggestions. But it was everything else that you've just read that helped to make them listen.

e-mail: philipa@ucsf.edu