There are two types of health literacy – one where you are able to read written directions and your medicine bottles; the other where you are given directions or explained your condition and you are able to internalize, comprehend, and take action to take care of yourself.
For diabetes, we may all too often jump to the conclusion that health literacy is the first kind; when there are problems, it’s because people can’t read when to take their oral medication or something similar. However, after reading a NYTimes article including a story of a patient with diabetes who ended up dying from complications, we realize there’s a huge barrier to care in comprehension that needs to be fixed in our health care system, too.
Jack, the patient, was a former start athlete who had diabetes, high blood pressure, vascular disease, and kidney failure. He had two leg amputations. Most of the nurses and doctors described him as “out of control” because of potential drug use or refusal to acknowledge his medical conditions. But as the author suggests, it may have been because no one ever explained his condition and the importance of self-care
How often does this occur in real life? More often than we’d like. New studies suggest half of Americans have struggles obtaining, understand, or acting on health information, which researchers now call “limited health literacy”. Being familiar with diabetes, we understand just how important self-care is and how it really makes the difference of living a relatively healthy life and having a story like Jack’s.
But what can we do?
Patients can take a more active role in educating themselves about health. This can be gathering up the courage to ask your busy doctor a question if you’re unsure; calling back to double check directions on your medication; and empowering yourself with more education and information so you understand why self-care is so important. Never be embarrassed if you don’t understand something a doctor is saying – after all, they’ve had years of medical training; they should be able to explain it clearly and in a way that you can understand and act on. Also, we highly recommend asking for a diabetes educator if you don’t have one. As we understand it, only 30% of people with diabetes have educators – you deserve one if you don’t have one! Medicare pays for ten hours of diabetes education the year you are diagnosed and two hours a year thereafter – although we don’t think this is nearly enough, it should be a great start. If you need an educator, call 1-800-832-6874
Doctors and educators can ask a follow up question such as “Did I explain this clearly?” or ask patients to repeat the directions back to demonstrate understanding. Patients, if you feel rush, interrupt your doctor and ask “Oh, can I repeat this back to you to make sure I’ve understood you clearly” so your doctor AND you are clear about their directions. We know doctors are busy and already pressed for time, but catching those red flags of misunderstanding could save a patient’s life, especially for diseases that are so patient-centered like diabetes.
What else can be done to improve health literacy?