It’s a scene repeated countless times every day in hospitals across the country. A patient lies in bed, hooked up to tubes, unshowered, in a hospital gown. Awakened every few hours during the night for medicine or tests, she has gotten little sleep. Her elderly husband has gone home to rest, and now she feels nauseated, weak and scared. She’s unsure exactly what is wrong with her.
Then a physician, on her morning rounds, comes in. She seems caring and well meaning as she asks the patient how she is feeling. She shares lab results, discusses the diagnosis and explains what comes next. The patient listens, and nods whenever the doctor asks, “Do you understand?” After several minutes, the doctor moves on to the next patient, satisfied that she has done her job.
Yet research shows that many patients, especially those who are old, sick or less educated, don’t understand, even when doctors are sure that they do. They lack “health literacy,” a concept that goes beyond patients’ ability to read, write and handle numbers to encompass having the capacity to understand and deal with matters relating to their own health. “There’s a series of skills patients must have every time they encounter the health care system,” says Stacey Sheridan, a researcher at the University of North Carolina. “It starts with making an appointment, and it continues with finding your way to the visit, checking in, filling out all kinds of forms, talking to the doctor, and getting follow-up testing.” That’s on top of being able to grasp complex scientific terms and issues, analyze medical information, and apply that knowledge. To be truly health literate, you also need to be able to put your condition into context, understand what influences it, and grasp how you may need to change your behavior.
It’s believed that about one in five U.S. patients has low health literacy, while roughly 30% more qualify as marginally literate. (Researchers peg patients’ statuses to traditional educational levels, with low literacy equating to a sixth-grade understanding or below, and marginal literacy being what a seventh or eighth grader might be expected to have.) And some researchers believe that as many as two out of three older patients have a level of literacy that leaves them unprepared to find their way through today’s complex medical system.
When inadequate health literacy hinders patients in managing their own care, their health may suffer and costs often rise. Study after study has shown that low health literacy is associated with higher hospitalization rates, more ER visits, and a lower likelihood of receiving preventive care such as mammograms and flu shots. A 2012 study at Boston Medical Center, for example, showed that patients with low health literacy were almost twice as likely as others to return to the emergency department within 30 days of an initial visit.
And problems with health literacy can lead to a cycle of unwanted consequences. Many patients don’t have a clear understanding of their illness or of how to manage it effectively. Physicians regularly overestimate how much patients comprehend and make matters worse by sprinkling their explanations with jargon. And the increasing complexity of medication regimens and other aspects of care that patients are expected to manage on their own, often by navigating online resources, makes it all the more likely that their health will be affected. They often remain unwell or suffer relapses, and in the process they cost the health care system a lot of money. A recent broad push toward shared decision making—the idea that patients should be partners with physicians in directing their own treatment—runs smack into the reality that many patients lack the health literacy that such participation requires.