Over the last 50 years, the relationship between doctors and patients has changed dramatically. At a doctor's visit in the 1950s, you would probably walk in with a complaint and walk out with a prescription or a specific recommendation about what to do. It is unlikely that you would have asked many questions or challenged the recommendations. And bringing your own information about your condition to the visit would have been nearly unheard of!
All of this has changed rather rapidly and dramatically for a number of reasons:
- Patients have unprecedented access to information through broadcast and print media as well as the Internet.
- Most health care professionals now expect and encourage their patients to take an active role in their health care.
- The notion of cooperative decision making between health care professionals and patients has gained widespread acceptance.
Increasingly, health care professionals seek and consider the preferences of their patients with a plan to share the decision making about tests and treatments. Current medical students learning communication skills are hearing much more about how to listen and how to incorporate patients’ preferences than previous generations of trainees. Many health care professionals, hospitals and health insurance plans provide newsletters or Web sites where consumers of medical care can get accurate and timely information in a way that almost never happened in the past.
No Longer "Whatever You Say, Doc"
Most people, including patients, their family members and health care professionals, view these changes as a positive development: The days of physicians telling their patients what to do are fading fast, and none too soon. It is widely believed that informed consumers make better decisions and that doctors should welcome increasing patient involvement — after all, it is the patient, not the doctor, who must accept the health risks and benefits of any decisions made in the doctor’s office.
The Downside of Patient Empowerment
As with most rapid change, however, there are problems to consider. The notion that increased patient empowerment is always good is at least in part a myth. For example, it clearly matters how the "informed" patient (or consumer) becomes informed — incorrect, misleading or incomplete information abounds. While "information equals power" in many circumstances, if the quality of the information is poor, the doctor-patient interaction, as well as a patient's health, may suffer. For example:
- There is such a thing as too much information. If you read a medical textbook about a medical condition, the information may terrify you unnecessarily. While a health care provider has past experience and a number of sources of information to provide context and perspective, the layperson doesn't have that advantage. In addition, in many cases, the medical literature tends to emphasize the most flagrant, severe or unusual cases. Physicians — the target audience for medical textbooks — know this, but the reader may not realize that milder cases even exist or that they may even be common. For example, I have seen many patients who have read on their own about lupus and are convinced they will soon require dialysis. In fact, even if they do have lupus, only a subset of the worst cases of lupus develops kidney failure. Another example of "information overload" is the third and fourth opinions about a condition. At some point, more information does not make you better informed. And if you type "asthma" into the average Web search engine, the 2.1 million sites offered could be overwhelming.
- Being proactive may come at a cost. While being actively engaged in your own health care decisions is generally worth the effort, it is easy to be misled or to make faulty assumptions. An example is the many alternative therapies marketed as "all natural" and "highly effective." The claims of effectiveness and purity of most over-the-counter alternative therapies are not always accurate; these agents are not regulated or tested by the U.S. Food and Drug Administration as prescription drugs are. In fact, they are required to carry a disclaimer, stating that they "are not intended to diagnose or treat any disease" — even as they claim a variety of health benefits.
Occasionally, such therapies cause significant harm — liver failure from kava is one example. Drug interactions (for example, between an unregulated remedy and a prescription medication) have not been studied for most herbs and supplements. In April 2002, a study was reported at the American Association for Cancer Research linking the use of St. John's wort to a significant reduction in the amount of a chemotherapy agent in the blood; this effect persisted even several weeks after stopping the supplement. Also important is the possibility that a person with a serious illness will be treated with an unproven therapy, foregoing established and proven approaches.
"All natural" does not guarantee safety. Just consider the fact that poisonous mushrooms and flesh-eating bacteria are both "all natural."
- Increased power comes with increased responsibility. Many people assume that an over-the-counter therapy must be safe because no prescription is needed. Most of the time such an assumption is reasonable, but it is important to read the "fine print." Taking more than the recommended dose or ignoring warnings about other medical conditions can be hazardous. For example, anti-inflammatory medications (such as ibuprofen (Advil, Motrin and others) or naproxen (Alleve) can provoke kidney failure, especially if taken in doses higher than recommended or in persons with underlying kidney disease. A 2002 study published in the journal of Obstetrics and Gynecology found that over half of women purchasing over-the-counter medicines for yeast infections had conditions those medicines would not treat. While it's hard to beat the convenience of over-the-counter medications, the increased control over one's treatment may come at the price of unexpected side effects or therapy that does not work.
- Information as sales pitch. Some information that may appear reliable may not be as helpful as it seems. The focus may not be to provide you with the most accurate and complete information. Instead, the focus may be to sell you something. For example, advertisements for weight loss programs often provide less emphasis on moderating calorie intake or increasing exercise (the linchpins of proven programs) than for the product being promoted. Direct marketing of prescription drugs to consumers often leads to more requests for the latest and most expensive medications. For many conditions, medications may be unnecessary or a less expensive option may be just as safe and just as effective as the advertised product.
Recognize that it's not advertisers' "fault." Their job is to sell a product; it is not their role to provide complete and balanced information. It's the consumer's job to consider the source of information and to recognize bias, which is not an easy thing to do.
- Technology is not always helpful. In recent years, an array of tests has become available for the asking (if one can afford it). Body magnetic resonance imaging (MRI), heart and body computerized tomography (CT) and a variety of blood tests are increasingly marketed directly to consumers, bypassing the need to have your own doctor's order. The assumption, of course, is that such tests will provide useful information (such as early detection of a treatable disease or reassurance that no significant illness is present). For reasons largely determined by the inaccuracies of most tests and how an abnormal result is defined, these tests are rarely helpful when ordered as a screening test. In fact, the results are often misleading when ordered in the absence of specific medical reason. Significant illness may be present with normal test results and most abnormal results will turn out to be "false positives," causing worry about something that turns out to be unimportant. Additional tests, including invasive, surgical procedures, may follow such false-positive results.
- There are people who would rather be told what to do. The passive model of patients waiting to be told what to do may actually work well for some people who feel unable to make a particular medical decision. Rather than feel paralyzed by indecision, some would much rather rely on their health care provider about what to do. A health care provider can offer advice that makes the decision easier for them ("Here's what I'd do if it were me or my family member"), an approach many experienced physicians use for those patients who prefer it.
Optimizing Patient Empowerment
The age of patient empowerment is a welcome development and it is here to stay. However, the idea that it can only improve care is a myth — there are pitfalls. Even so, the benefits of taking an active role in your health care can clearly outweigh the risks. Here are a few recommendations to make the most of patient empowerment:
- Ask questions when you see your doctor. Make a list of them before your visit; ask your health care professional if he or she accepts or welcomes e-mail. Don't feel you have to wait for a visit to ask a question. Try to avoid hypothetical situations unlikely to affect you or trying to cover every possible contingency.
- Get a second opinion, especially if things are not going well, but avoid third and fourth opinions.
- Get a primary care physician to coordinate your care and to look at the big picture. Even if your health care insurer does not require it, having a primary care physician can be a tremendous help, especially if you have several different problems.
- Be skeptical. Consider whether the source of your information has a vested interest other than your well-being. Avoid relying on sources of information that appear to be trying to sell you something.
- Stay informed by getting information from reliable sources. Your doctor, academic medical centers, government agencies and professional medical organizations are good places to start. The Web has great potential as a source of health information, but the quality varies widely; look for information on the Web that is accredited, affiliated with a reputable academic medical center and does not push you to buy something.
The Centers for Disease Control and Prevention
U.S. Department of Health and Human Services
The National Institutes of Health
Robert H. Shmerling, M.D. is associate physician at Beth Israel Deaconess Medical Center and associate professor at Harvard Medical School. He has been a practicing rheumatologist for over 20 years at Beth Israel Deaconess Medical Center. He is an active teacher in the Internal Medicine Residency Program, serving as the Robinson Firm Chief. He is also a teacher in the Rheumatology Fellowship Program.