An elderly woman sent home from the hospital develops a life-threatening infection because she doesn’t understand the warning signs listed in the discharge instructions. A man confused by a form in a doctor’s office reflexively writes “no” to every question because he doesn’t understand what is being asked. A young mother pours a drug that is supposed to be taken by mouth into her baby’s ear, perforating the eardrum. And a man in his 70s preparing for his first colonoscopy uses a suppository as directed, but without first removing it from the foil packet.
These are not isolated events. According to the AMA, poor health literacy is “a stronger predictor of a person’s health than age, income, employment status and race.”
Health literacy includes the ability to understand instructions on prescription drug bottles, appointment slips, medical education brochures, doctor’s directions and consent forms, and the ability to negotiate complex healthcare systems. Health literacy is not simply the ability to read. It requires a complex group of reading, listening, analytical, and decision-making skills, and the ability to apply these skills to health situations. As a result, patients often take medicines on erratic schedules, miss follow-up appointments, and do not understand instructions like “take on an empty stomach.”
A 2006 study by the U.S. Department of Education found that 36% of adults have only basic or below-basic skills for dealing with health material. This means that 90 million Americans can understand discharge instructions written only at a fifth-grade level or lower.
Vulnerable populations include:
- The elderly (age 65+) – Two thirds of U.S. adults age 60 and over have inadequate or marginal literacy skills, and 81% of patients age 60 and older at a public hospital could not read or understand basic materials such as prescription labels.
- Minority populations
- Immigrant populations
- Low income – Approximately half of Medicare/Medicaid recipients read below the fifth-grade level.
- People with chronic mental and/or physical health conditions
Reasons for limited literacy skills include:
- Lack of educational opportunity – people with a high school education or lower
- Learning disabilities
- Cognitive declines in older adults
- Use it or lose it – Reading abilities are typically three to five grade levels below the last year of school completed. Therefore, people with a high school diploma, typically read at a seventh or eighth grade reading level.
Communicate in a manner that meets the patient’s needs
The Joint Commission, which accredits hospitals, is requiring them to use plain-language materials and to “communicate in a manner that meets the patients oral and written communication needs” in providing care. For example, instead of “myocardial infarction,” use heart attack; instead of “febrile,” use fever; replace “hyperlipidemia” with high cholesterol. Doctors are also encouraged to replace “diet” with food because many people when they hear diet believe doctors want them to go on a diet. It is also recommended replacing “exercise” with walking, because, in this case, when patients hear exercise they believe they have to go to the gym. Replacing ”medicalese,” with plain language will save lives.
If you want to be sure you’re getting the right care, you have to be able to understand instructions. If you don’t understand, speak up! Don’t be embarrassed; you’re not alone. These are life and death situations. There is no room for shame!
- Report on the Council of Scientific Affairs, Ad Hoc Committee on Health Literacy for the Council on Scientific Affairs, American Medical Association, JAMA, Feb 10, 1999.
- Williams, MV. JAMA, December 6, 1995.
Jeff Kreisberg is a patient advocate, educator, scientist author of the book “Taking Control of Your Healthcare,” and, until his retirement, a professor at the University of Texas Health Science Center in San Antonio, Texas. Jeff also blogs regularly on health issues on his website, Taking Control of Your Healthcare. Follow him on Twitter: @kreisberg[Photo By misspixels]