Dr Alper is Clinical Professor of Medicine, University of California, San Francisco, and Visiting Scholar, HooverInstitution, Stanford University, Calif.
A Primer for Doctors and Patients in the Information Age
The internet is a fact of life, and online searching for health information leads all other subjects in popularity—pornography included. So it came as no surprise to me that 2 new patients earlier today came in well-armed with medical “information” and had already concluded what was wrong with them.
A 40-ish man whose libido and sexual performance no longer matched his youthful standards sputtered apprehensively about “low testosterone syndrome.” He had badgered another physician into giving him nearly 6 months of alternate weekly testosterone injections—to no avail. Now he was scared because he had also read that the injections, over time, can cause testicular atrophy. Serum testosterone levels remained low normal throughout.
His lab values were readily explained by a low, but normal, sex hormone—binding globulin level. Bioavailable testosterone was actually normal even before the injections, so the lack of response to the injections was not surprising. A careful history revealed an obsessive degree of performance anxiety and a fairly good response to 2 of the 3 popular erectile dysfunction drugs.
In other words, not such a big problem. Given this explanation, the patient visibly relaxed. He agreed to stop the injections, to “not be so hard on himself,” and to come back in 3 months. I was thanked for being so straightforward with him, and my fee was paid before he left the office. (I had wondered about this, because I had steered him away from what he originally had wanted.)
The other patient, a 60-ish woman, self-described as a “former hippie,” was concerned about her thyroid status. She had undergone partial thyroidectomy for benign nodules 5 years ago and was taking thyroid extract, which she had persuaded her former physician to substitute for the more reliable levothyroxine (Synthroid) that was originally prescribed. But what really bothered her, as it turned out, was her inability to control her weight, which had progressively risen by 60 lb ever since her menopause and last divorce, which had both occurred about 9 years ago.
Once again, the patient had researched the question online and had an explanation for her mysterious malady. She steadily pelted me with adversarial language. “You won’t believe this” was a typical example. She also made a few snide comments about “doctors.” I resisted the urge to become defensive and asked about her diagnostic theory.
Well, it seems she was a victim of “thyroid instability.” Her lifelong weight of 106 lb was during her “hyperthyroid phase.” Now, her metabolism had “gone in the opposite direction.” This theory also explained major levels of obesity in her mother and most maternal relatives.
I acknowledged that the idea was possible, but not as likely as some other explanations. We discussed them and she agreed to blood tests and to completing a food questionnaire and diary. As I left, the patient seemed rather moved and said, “Thanks for taking me seriously.”
I recognize that this may all sound a bit touchy-feely. But in both cases the internet printouts were more of a symptom than a problem. As it happened, I wasn’t surprised, because just a few days earlier I had had a chance to gauge consumer attitudes when I joined with a pharmacist-informaticist in giving a community-service conference titled, “Are You and Your Doctor on the Same Information Wavelength?”
We covered the nuts and bolts: websites and reliability of information to start with. But it soon became apparent that patients’ fear of being ridiculed or considered stupid is far more prevalent than I might have guessed. Some even expected to be put down or humiliated and preemptively came across as a little hostile. Others seemed afraid to embarrass or anger their doctors. Seeing that I was the symbolic stand-in for these doctors, I encountered their reluctance to talk freely. Some actually stumbled over their words.
It took a while for me to recall that all new technologies create a social dislocation that frequently is not addressed. The ready availability of information resources to patients, once a nearly exclusive physician prerogative, changes patients’ relationships with doctors“--”in both directions. At the least, an element of awkwardness is introduced. What happens when the patient knows more than the physician about a particular point? What is the harried physician to do when confronted with a stack of printouts?
Discomfort may have to be the price we all pay for better-informed patients. I believe the price is worth it, because patients who know more are more inclined to take their health seriously and be compliant (or adherent) with medical advice. This can be crucially important in treating chronic diseases, particularly silent ones, such as diabetes, hypertension, or osteoporosis.
Discomfort notwithstanding, there are ways for patients to use medical information to get more from their office visits.
Here are some things physicians may advise patients to help them go about it:
• Understand what you are looking for and why. Is it just to be informed? Or, more likely, is there something in particular on your mind? Perhaps confirming a diagnosis, checking prognosis, or a treatment option? Is something frightening you, like the side effects of a medication? The better you understand where you are coming from, the greater the odds of putting information to good use.
• Recognize that nobody is totally objective, especially about ourselves and our loved ones. It is very easy to focus too heavily either on risks or benefits, when the truth is that one never exists without the other. Exaggerating risks and ignoring the potential benefits of any medical intervention biases your decisions, and not necessarily in your own best interests. So, for example, check to see whether the drug-information sheet that comes with prescriptions spells out what the medication can do for you as well as to you. Only you can decide what you think is best for you. You even have the right to be wrong. But first look at questions from all sides.
• Remember also that you are the world’s leading expert on how you feel. You owe it to yourself to communicate that information to your doctor, whether it is to describe your symptoms or to indicate a concern about how he or she may react to your thoughts about the problem. There’s no substitute for being frank, especially in this day of managed care, where the “fit” between doctors and patients is more a matter of chance than it was in the past. It’s harder to trust a doctor whose name you got out of a book than one referred by a good friend or a relative who knows you both. It may help to know that this probably bothers the doctor as much as it does you. Discuss it, and you’ll learn more about one another.
• Think about yourself too. How much autonomy do you really want? Knowledge and responsibility may protect you, but they can also weigh heavily. The old days of “doctor knows best” weren’t all bad for patients. Nor were they all good for doctors, many of whom were greatly burdened by their patients’ total faith in them. This idea is not new: Adam and Eve had to leave the Garden of Eden after Eve had bitten into the apple—the apple of knowledge.
There’s clearly a lot more to go over than “just the facts.” Indeed, it may take more than a single office visit to resolve important medical questions. Just as it’s going to take me more than this single column to adequately address what patients should do with the bundle of printouts they are consider-ing bringing to their doctor—and what doctors should do when they are thrust at us.