Who's in Charge?
Tuesday, July 11, 2006
For much of my 15 years of medical practice, I was a card-carrying member of the group of doctors who resent know-it-all patients -- the Web surfers, the health column clippers, the types we suspect are out to feed their egos by proving they know more than their physicians.
But most self-informed patients can sense our cynicism, and they don't like it. A 2003 study published in the International Journal for Quality in Health Care added to growing evidence that, for patients, physician "empathy is perceived as going hand-in-hand with competence."
Fortunately, my jaundiced view has given way to an appreciation for patients who inform themselves. It turns out that patients we acknowledge as stewards of their care tend to be more satisfied with their treatment. Several studies also seem to suggest that informed patients tend to have better outcomes.
For the ideal combination, mix an informed patient with an inquiring physician. Arthur Caplan, chairman of the medical ethics department at the University of Pennsylvania, likes to cite a quote attributed to the ancient Greek physician Galen: "The best physician is something of a philosopher." Such a physician does more than "pose questions," says Caplan. He "isn't afraid to have them asked. The process of questioning can lead to understanding and patient satisfaction."
My patient Brian Morton, a 50-year-old writer and teacher, became more cautious about his health after dealing with his infant daughter's illness. Morton began to read more about health and medicine and to ask more questions of me.
I treated Morton for high blood pressure with a diuretic and a pill, Diovan, that dilates arteries. But when I began raising his Diovan dose in response to high readings -- ranging from 160 to 180 systolic pressure over 100 to 110 diastolic pressure (normal is generally considered less than 130 over 85) -- he was uneasy. Concerned about the potential side effects of higher doses, including fatigue and dizziness, he began to measure the pressure himself and record the values at home. The readings he got were consistently lower, 120 to 140 over 80 to 90.
What the two sets of readings suggested was "white coat syndrome," a recognized phenomenon in which blood pressure levels are higher in a doctor's presence. These results helped me to adjust his medications more effectively. Though I didn't disregard my own readings, I did begin to figure his in. I became less likely to raise his dosage automatically in response to an elevated value obtained in my office.
Some doctors would have been made uneasy by Morton's increasing scrutiny -- he kept track of all his medicines, and once stopped the pharmacist from dispensing too high a dose by mistake. But I learned that he wasn't unhappy, just questioning. Once he saw he could remain in control of his health decisions, our relationship was able to flourish.
Morton is not an isolated case. Patient knowledge often informs treatment -- or should.
Of course, not all information is helpful. Direct-to-consumer ads, which now account for more than 16 percent of drug company marketing dollars, lead my patients to pressure me to prescribe the newest and most expensive drugs, thereby overlooking cheaper tried-and-true generic drugs.
I have also found that many Internet Web sites, even when they report factual information, skew toward severe cases and prompt patients to believe their health is worse than it is. Even the most reputable online sources, such as Web-MD ( http:/
Whatever the source of a patient's information, a physician is most effective when he or she isn't defensive, but acts as an interpreter of information and guide of treatment, leaving the ultimate control to the patient.
That's not just my opinion.
A 1999 Canadian research review of 22 published studies focusing on crucial aspects of doctor/patient communication, including "clear information provided to the patient, mutually agreed upon goals, an active role for the patient, and positive affect, empathy, and support from the doctor," found that these features led to patient satisfaction and adherence to treatment plan. And the studies showed a "generally positive effect of key dimensions of communication on actual patient health outcomes such as pain, recovery from symptom anxiety, functional status, and physiologic measurement of blood pressure and blood glucose."
Many studies have shown a link between poor patient understanding about his or her health (that is, poor health literacy) and poor outcomes. In 1999, a committee of the American Medical Association's Council on Scientific Affairs tied health literacy to improved health outcomes for multiple diseases. A 2002 study in the Journal of the American Medical Association linked the use of patient self-management education programs with improved outcomes in many chronic illnesses.
On their own, many of my patients have developed self-education skills, some of which have led to astute self-diagnoses.
New York microbiologist Guenther Stotzky, a longtime patient of mine, developed a painfully swollen leg a few years ago. Examining him, I could make no definitive determination, since there wasn't the kind of accentuated warmth or redness characteristic of infection or a blood clot. I felt he had probably strained a muscle, but he felt strongly that he had gout. So did his cardiologist.
"What does your cardiologist know about gout," I grumbled.
I had reason to be skeptical. Yes, his leg was tender and swollen, and slightly warm to the touch, but it lacked the bright-red, extremely painful joint inflammation that I -- and other physicians -- commonly ascribe to gout.
But Stotzky had read about atypical presentations of gout on the Internet, and he convinced me that he was right, especially when his uric acid level came back suspiciously high, characteristic for gout. I treated him with two anti-inflammatory medicines, and he improved.
I suppose I was more open to Stotzky's ideas because of his scientific background. But I was also starting to learn that my patients often know their bodies better than I do, and that they, too, can read up on their symptoms, coming to me with a diagnosis already in mind. I am less likely to be embarrassed if I don't battle my patients for control, but let them provide insights into their own health.
A Cholesterol Quandary
Some patients readily offer suggestions. Others rely more on my input. A third kind of patient incorporates their suggestions together with my input.
One patient, a nationally known 52-year-old lawyer, who -- she asked that her name be withheld so that her medical history not become known to clients or judges -- preferred that all medical decisions be made jointly -- in much the way, I thought, that she mediated solutions in her law practice. We had developed a good rapport. She was in good health and rode horses regularly. Our main discussion at her yearly checkups concerned her elevated cholesterol level.
Her total cholesterol ranged between 230 and 260 (well over the 200 ceiling recommended by the American Heart Association) and her low-density lipoprotein (LDL, or "bad" cholesterol) ranged from 140 to 160, considered borderline high. Many heart experts feel the target numbers should be lower still.
But despite her readings, my patient was reluctant to take cholesterol-lowering medication since she had no heart disease, no family history of heart disease and no significant risk factors for heart disease. She didn't smoke, had normal blood pressure and wasn't overweight. She said she ate mostly vegetables and few dairy products.
I was less comfortable with her high numbers. I mentioned statins every time she came to see me. She continued to resist. Although the medical literature showed that these cholesterol-lowering drugs dramatically reduce plaque in the coronaries of those with known disease, she pointed out correctly, there was still no direct evidence that the treatment worked in patients without clinical heart disease.
Beyond that, she simply didn't want to start a pill -- for good reason. I've learned from my patients that pills can be a form of dependency. It is also too easy for many medicine-takers to forgo important lifestyle changes. Though it was unlikely to happen with this patient, many people find it is too easy to revert to a lax diet once they are put on a cholesterol-lowering drug. I call this the "hot fudge sundae with Lipitor on top" phenomenon.
Finally, when her total cholesterol rose to 265, I admitted to her that I was on a statin drug myself, expecting this would provide the final reassurance she needed.
"I tolerate it fine," I said. "Some people have muscle aches, but many feel nothing at all. I would monitor your liver and your muscle enzymes, but they're normal in most cases."
"Why doesn't that reassure me?" she replied, dryly.
Was there another test that could help us decide, she asked. I thought about it and suggested performing a high-speed CT (computed tomography) scan of the chest to look for evidence of calcified coronary plaques. This test wasn't perfect, and I was one of many doctors reluctant to use it because of concern it was overly sensitive (meaning that a positive result didn't always correlate with definite disease). But in this case, we both agreed it would provide a tiebreaker: no to the drug if negative, yes if the test showed calcium.
She is now set to have the test in mid-July; her insurer will cover the $350 fee. We both hope the test will come back negative.
But we feel we've made a reasonable choice. We are working together in the gray area of health care where there is no right or wrong answer. Our joint decision on how to proceed is far more gratifying to both of us than a unilateral one, as occurs when a patient stubbornly refuses a treatment that a doctor is stubbornly insisting on.
In the meantime, my patient's cholesterol readings remain high. After reading a news report about two patients suing Pfizer over pain, weakness and memory loss they claim was caused by Lipitor, she shot me an e-mail, saying such complaints are "exactly what concerns me about the drug du jour." Still, she is also more concerned about her cholesterol than before. On my end, there is a growing appreciation of her right to choose as well as her intuitive wisdom regarding her health. ·
Marc Siegel is an internist and associate professor of medicine at the New York University School of Medicine. Comments: firstname.lastname@example.org.