The United States has a problem: medical illiteracy. Close to half the adults in the United States do not understand what doctors, pharmacists, health care organizations, and other health care professionals tell them about their medical care and treatment options. Doctors and researchers alike characterize poor health literacy as a major drain on the U.S. health care system, contributing to higher costs and lower medical treatment success levels.
A relatively new concept in bioethics, health literacy refers to “an individual’s capacity to obtain, process and understand basic services necessary to make important decisions regarding his or her health.” Board on Neuroscience and Behavioral Health, Institute of Medicine, Health Literacy: A Prescription to End Confusion 31 (2004). According to recent studies, approximately ninety million Americans have low health literacy.
While the concept of health literacy seems novel, the problem has been percolating for some time. Over the past century, medical technology progressed at a breathtaking rate. In the 1900s, smallpox and tuberculosis still raged, yet fifty years later technology had virtually eradicated them, and from there the advancements steadily multiplied. Many doctors find it taxing to keep up with the new technology, so it is no surprise that patients often come away with a fuzzy understanding of medical procedures or techniques.
Patient confusion stems not just from fancy surgeries but from relatively ordinary treatments. For instance, approximately ten and one-half million Americans suffer from diabetes. Treatment involves numerous medications, injections, and instructions. If a patient does not understand his or her doctor’s or pharmacist’s instructions, or those on the prescription label, and takes medication incorrectly, the condition can easily deteriorate. This results in more invasive treatment, higher costs, and a less desirable patient outcome. Extrapolate the costs of one patient to ninety million, and suddenly a small problem is titanic.
Confused patients can ask questions, of course, but this oversimplifies the issue. Medical decision making is often hurried because of doctors’ busy schedules, many Americans do not have a primary care physician or an established doctor-patient trust relationship, and many may not even realize they did not understand the doctor’s explanation. According to the U.S. Department of Health, patients on Medicare, Medicaid, or without health insurance have the lowest levels of health care literacy but often get the least amount of time with health care providers. But how can a doctor know if a patient misunderstood his or her explanation or if the patient is just too intimidated, confused, or even apathetic to ask for clarification?
Doctors already face high malpractice premiums and packed schedules, so it might seem unfair to heap more responsibility on their shoulders. Nevertheless, there are relatively simple ways doctors can assess patients’ understanding of procedures or instructions. Doctors can ask patients to repeat their explanations. Doctors can then correct any mistakes before a patient leaves the office. Further, doctors should boil down health care information to its most comprehensible, jargon-free form.
Mandating coherent, easily digestible explanations from doctors might sound impossible, but laws with a similar purpose exist in other fields. Federal securities laws require that certain documents geared toward investors conform to the “plain English” rule, requiring that documents be written on a sixth or seventh grade reading level, in the active voice, and with no double negatives. Securities documents explain investment opportunities in an effort to protect investors from bad investments; poor investor choices mean diminished wealth. Doctors’ explanations address health and well-being; poor choices may mean greatly diminished health or even death. To require clarity and cogency in the former but not the latter is nonsensical. The financial information contained in Securities and Exchange Commission documents is as complex, dense, and sophisticated as any information found in the medical field, yet no agency requires doctors, hospitals, or health management organizations to simplify their language. The extra time health care professionals devote to explanation of patient health care information could improve outcomes and reduce frustration with the health care system.
While doctors should bear substantial responsibility for verifying patient understanding of medical instructions, early and continued education about health care could also ameliorate the problem. In the book Health Literacy: A Prescription to End Confusion, the Committee on Health Literacy for the National Institute of Medicine makes a number of suggestions for integrating health education into primary and secondary school curriculums. Ideally, basic health care instruction should start in elementary school and continue until high school graduation. The curriculum could build from baseline knowledge of human anatomy and body systems to cover complicated skills such as reading and comprehending medical literature and forms. And doctors themselves need further education and support in the form of increased cultural and language training, since communicating instructions to a patient with limited English or a different cultural understanding presents unique challenges. The statistics on health
literacy are frightening, but the tools to combat low health literacy are relatively simple. Increased health literacy might not solve all of America’s health care problems, but patients, physicians, and other health care professionals would derive numerous benefits from a more efficient and effective health care system.