How often have you left a doctor's office wondering just what you were told about your health, or what exactly you were supposed to be doing to relieve or prevent a problem? If you are a typical patient, you remember less than half of what your doctor tries to explain.
Whether you left school at 16 or have a doctorate; whether your annual income is in four figures or six; whether you are black, white, Hispanic, Asian or American Indian, chances are there have been many medical encounters that left you with less than optimal understanding about how you can improve or protect your health.
National studies have found that "health literacy" is remarkably low, with more than 90 million Americans unable to adequately understand basic health information. The studies show that this obstacle "affects people of all ages, races, income and education levels," Dr Richard Carmona, the US surgeon general, wrote in the August issue of the Journal of General Internal Medicine, which was devoted to health literacy.
The fallout is anything but trivial. Researchers have found that poor health literacy, which is especially prevalent among the elderly, results in poor adherence to prescription instructions, infrequent use of preventive medical services, increased hospitalizations and visits to the emergency room and worse control of chronic diseases.
The consequences are poorer health and greater medical costs. All because doctors fail to speak to patients in plain English (or Spanish or Chinese or any other language) and fail to make sure that patients understand what they are told and what they are supposed to do and why.
Twice as likely to die
In a study published in the internal medicine journal, conducted among 2,512 elderly men and women living on their own in Memphis and Pittsburgh, those with limited health literacy were nearly twice as likely to die in a five-year period as were those with adequate health literacy.
That held true even when age, race, socioeconomic factors, current health conditions, health care access and health-related behaviors were taken into account.
Another study in the journal among 175 adult asthma patients treated by Cornell University doctors found that "less health literacy was associated with worse quality of life, worse physical function and more emergency department utilization for asthma over two years."
Among the many problems resulting from limited health literacy are misinterpretations of warning labels on prescription drugs. For example, among 251 adults attending a primary care clinic in Shreveport, Louisiana, those with low literacy were three times more likely to misunderstand warnings than the more literate.
When the warning label read "Do Not Chew or Crush, Swallow Whole," misinterpretations included "Chew it up, so it will dissolve" and "Don't swallow whole or you might choke."
When the warning read "Medication Should Be Taken With Plenty of Water," the mistakes included "Don't take when wet" and "Don't drink hot water."
When the warning was "For External Use Only," the mistakes included "Medicine will make you feel dizzy" and "Use extreme caution in how you take it."
Despite major reports on the need to improve health literacy issued in the last decade by organizations including the American Medical Association and the National Academy's Institute of Medicine, little improvement has been noted in how much patients understand and remember about encounters with health care practitioners.
A main obstacle has been the decreased time patients can spend with their doctors, dictated largely by managed care and other medical reimbursement plans.
A second hurdle is the embarrassment that patients with limited health literacy experience when they do not understand what the doctor has said. And, of course, asking for clarification is seriously impeded by the imbalance in power between the white-coated physician and the paper-wrapped patient. Even when conversations are conducted in the doctor's office with a fully clothed patient, patients are often reluctant to ask questions.
The tools for repairing this problem lie mainly within the realms of medical education and clinical practice. More medical schools, residency programs and continuing education programs for practicing physicians need to include training in clinical communication skills.
Dr Sunil Kripalani of the Emory University School of Medicine in Atlanta and Dr Barry Weiss of the University of Arizona College of Medicine in Tucson suggest these strategies:
■ Doctors should assess patients' baseline understanding before providing extensive information: "Before we go on, could you tell me what you already know about high blood pressure?"
■ Doctors should use plain language, not medical jargon, vague terms and words that may have different meanings to a lay person. They should say chest pain instead of angina, hamburger instead of red meat and, "You don't have HIV." instead of "Your HIV test was negative."
■ To encourage patients to ask questions, doctors should ask, "What questions do you have?" rather than, "Do you have any questions?"
■ Doctors should confirm the patient's understanding by saying, "I always ask my patients to repeat things back to make sure I have explained them clearly." Or, if a new skill like using an inhaler was taught, the doctor should have the patient demonstrate the action.
■ Then, as fail-safe measures, the doctor should provide written instructions and educational material for the patient and family to review at home.
Kripalani and Weiss say none of this should take more than a few minutes. And by tailoring information to a patient's individual needs and limiting it to the most important points, the process can save time in the long run, result in better control of chronic illness and lead to shorter and less frequent office visits.
Medical terms
Experts on health literacy also encourage doctors to assess patients' health literacy by asking them to read aloud a list of 66 medical terms, each within five seconds. Patients are scored on how many words they pronounce correctly.
Do not wait until doctors become better at communicating. If you want the best medical care, you have to take the initiative. If the doctor says something you do not understand, ask that it be repeated in simpler language. If you are given a new set of instructions, repeat them back to the doctor to confirm your understanding. If you are given a new device to use, demonstrate how you think you are to use it.
Insist that conversations about serious medical matters take place when you are dressed and in the doctor's office. Take notes or take along an advocate who can take notes for you. Better yet, tape-record the conversation to replay it at home for you and your family or another doctor.
If you have received a diagnosis of a new problem and want to explore it further on the Internet, be sure to look up reputable sites. Two that can be relied on are www.nlm.nih.gov, produced by the National Library of Medicine, and www.healthfinder.gov, produced by the US Department of Health and Human Services. Many major medical centers also provide useful, accurate information online.
Avoid anecdotal information posted by patients or patients' relatives, as well as write-ups by commercial organizations that overtly or covertly sell products.
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