Scenario: Marie's husband, Mitch, had a massive stroke that resulted in aphasia, dysphagia, and other serious sequelae. Marie remained by his side in acute care to be his eyes, ears, and voice. On the seventh day of his stay, she gave consent for Mitch to have a "percutaneous endoscope gastrostomy tube" inserted, not realizing that it was a "feeding tube"—a device that went against the family's wishes.
This type of scenario occurs far too often, as citizens are at risk for unapproved and unsafe care because their literacy skills are insufficient to understand medical jargon and unclear language. In an editorial in Annals of Internal Medicine, Schillinger (2006) pointed to the elephant in the room: "The U.S. health system largely operates under the assumption that all patients have high English language literacy skills. In fact, many do not." Davis et al. (2006) show that a substantial portion of users in the U.S. health care system don't understand and are unable to execute correctly the instructions on prescription bottle labels.
Nearly half of all adult Americans—90 million people—have difficulty understanding and using health information. Further, the rate of hospitalization and use of emergency services is higher among patients with limited health literacy, says a report from the Institute of Medicine (IOM) titled Health Literacy: A Prescription to End Confusion (Institute of Medicine, 2004). Limited health literacy may lead to billions of dollars in avoidable health care costs and, more importantly, affect thousands of lives. Inadequate health literacy not only directly affects the physical aspects of patient safety, but also has a negative impact on the fiscal aspects of health care delivery. The costs of poor health care literacy are estimated at a staggering $50 billion to $70 billion (www.chcs.org, 1998 by the National Academy on an Aging Society), due to:
- Longer and more frequent hospital stays
- Ineffective use of prescriptions
- Lack of comprehension of treatment plans
Understanding Basic Information
More than a measurement of reading skills, health literacy also includes writing, listening, speaking, arithmetic, and conceptual knowledge. According to the IOM report, health literacy is "the degree to which individuals have the capacity to obtain, process, and understand basic information and services needed to make appropriate decisions regarding their health."
At some point, most of us will encounter health information that we cannot understand. Inadequate health care literacy affects all population segments, although it is more common in certain demographic groups, such as the elderly, the poor, members of minority groups, and recent immigrants to the United States. Even those with a litany of degrees and strong reading and writing skills may encounter trouble comprehending a medical form or a doctor's instructions regarding a drug or a procedure.
Certainly, patients who don't speak English, have presbyopia and/or presbycusis, or never learned to read, write, or do basic math will have problems. Patients with neurological disorders affecting speech and language or those with severe hearing impairments will be even more challenged when receiving verbal "must-have" medical information. In addition, patients face the stress of a medical crisis, possibly without an advocate or significant other being present, or while in such pain, confusion, or depression that very little makes any sense.
Today's reality of fewer nurses and pharmacists erodes quality patient education. Most experts agree that a concerted effort by the public health care system, the educational system, the media, and health care consumers is urgently needed to improve national health literacy. If this "fix" does not happen, the IOM report suggests that attempts to improve the quality of care, reduce medical errors, lower health care costs, and narrow pronounced disparities may fail.
The real bottom line is that patients with low health literacy are more likely to be hospitalized, not understand the instructions from their last episode of care, and thus become medically unstable sooner. According to Williams et al. (1995), the expectancy for hospitalization of the so-called "literate" is 15%, while the expectation for the illiterate is more than double, at 32%.
Steps for Practitioners
Avoiding jargon is the first step for getting someone's attention and conveying a message. Ask your administrative staff if they understand your practice's written information and patient forms. Professionals should put their informed consent to the "smell test" with these questions:
- Can you understand it? Can your patients?
- Have you assessed your patient education materials, including your informed consent, using the literacy-level assessment available on Microsoft Word?
- Have you field-tested or used a patient focus group to evaluate and calibrate your patient education and other materials?
Microsoft Word 2002 uses the Flesch-Kinkaid Readability Test (Wikipedia, 2007) to assess the difficulty of a reading passage. As a rule of thumb, scores of 90-100 are considered easily understandable by an average fifth-grader, while eighth- and ninth-graders could easily understand passages with a score of 60-70. Patient education material should never be targeted above the eighth-grade level.
Unfortunately, the most recent data indicate that a large proportion of the U.S. population—perhaps as many as half of American adults—lacks sufficient general literacy to undertake and execute the needed medical treatments and preventive health care effectively (Kirsch et al., 1993, and Kutner et al., 2005). In a 1995 Journal of the American Medical Association study by Williams et al., one-third of patients at two public hospitals had adequate functional health literacy. The study showed that many patients struggle with health reading tasks, as show by the following table:
|Take medication every 6 hours
|Take medications on an empty stomach
|Upper GI instructions
(fourth-grade level material)
|Knowledge of Medicaid rights
(high-school level material)
Using a picture, chart, or other visual iconic cue as part of the patient education repertoire enhances the possibility that those who are very young, non-English-speaking, bilingual, neurologically impaired, or elderly will better understand. Consider making a patient education video or audio tape. Keep it simple; repeat and rephrase key talking points. Use bullets to document the key points for the patient.
When possible, ask the patient to repeat the instructions and to "show me what I asked you to do." Ask the hearing aid patient to change a battery, insert the aid, and turn it on and off before leaving the office. Make sure the person with dysarthria understands instructions for oral motor exercise and can demonstrate them. Ask the patient and significant other to identify exactly the prescribed diet for preventing swallowing problems.
As part of inpatient treatment with a person with aphasia, determine if the patient understands his/her medication regime before discharge. The patient should be able to count out the pills, identify when they are to be taken, and understand any other requirements, such as "take on an empty stomach." In short, the SLP can integrate patient safety and enhanced literacy/improved compliance as part of the treatment program.
Finally and most importantly, audiology and speech-language pathology professionals should be at the forefront in contesting the culture of blame and shame. Encourage patients and family members to ask questions and be sure that they understand the condition being treated and steps towards its amelioration. Patients should never be ashamed to ask questions, ask for repetition, or admit they don't understand or can't perform a given activity. Each session's closing question to the patient should always be, "Do you have any questions?" As part of its "Patient's Bill of Rights," the Agency for Healthcare Research and Quality advises several simple steps, including "Be an active member of your healthcare team...that means taking part in every decision about your health care so you can get better results," and "Speak up if you have questions or concerns. You have a right to question anyone who is involved with your care."
Many actions can help create a more educational and healthy environment. All-staff training will increase awareness. The receptionist and support staff, as front-line weapons to combat health care literacy challenges, can offer to help with paperwork and forms, reassure patients, and determine if patients have any lingering questions.
Evaluate the placement, size, clarity, simplicity, iconicity, and language of signage. Maps can be printed on the back of appointment letter/requisition slips; use large font size and mark paths to desired spot and match names. Be alert to clues such as incomplete forms and misspellings.
We cannot eliminate health care illiteracy with one measure. Start with only one initiative, obtain baseline data, and then begin the odyssey of enhancing patient safety by enhancing health care literacy.