Do Patients Understand?

Public health nurse: “Jill, I see you are taking birth control pills. Tell me how you are taking them.”

Jill: “Well, some days I take three; some days I don't take any. On weekends I usually take more.”

Public health nurse: “How did your doctor tell you to take them?”

Jill: “He said these pills were to keep me from getting pregnant when I have sex, so I take them anytime I have sex.”

This story is true. Jill is a single woman, age 21 years, who works as a house cleaner. She reads at about the second-grade level.

Background

Communication barriers often go undetected in health care settings and can have serious effects on the health and safety of patients. Limited literacy skills are one of the strongest predictors of poor health outcomes for patients.^1,2 Studies have shown that when patients have low reading fluency, they know less about their chronic diseases, they are worse at managing their care,³ and they are less likely to take preventive measures for their health.⁴ However, patients do not need to have limited literacy skills to have low health literacy. The Institute of Medicine defines health literacy as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.”⁵

Limited health literacy is a hidden epidemic. It can affect health status, health outcomes, health care use, and health costs.⁶ The entire health care system relies on the assumption that patients can understand complex written and spoken information. Patients are expected to navigate a complex medical system and then manage more and more of their often complex care at home. If they do not understand health information, they cannot take necessary actions for their health or make appropriate health decisions.

The 2003 National Assessment of Adult Literacy found that nearly half of the US population has inadequate literacy. These individuals cannot use instructions on a prescription drug label to determine what time to take that medication.⁷ Individuals classified as having low literacy skills cannot locate an intersection on a map or calculate the total cost of purchases on an order form. After years of education and training, physicians find themselves in the small minority of the population with high-level literacy skills. They may often unknowingly present health information at a literacy level higher than their patients can grasp. Additionally, medical training comes with its own vocabulary that can further encrypt health information presented to patients. For the health and safety of patients, the gap between the literacy of clinicians and that of their patients must be bridged to achieve effective communication and understanding. It is important to recognize that there are individuals with adequate literacy who still may have difficulty understanding written and spoken health care information because of the medical terminology and jargon that is used in the health care environment.

Individuals with limited health literacy are at risk for error and poor health outcomes. They have trouble understanding medication instructions, appointment reminder forms, informed consent, discharge instructions, and health education materials. This leads to lack of adherence to medication regimens; missed primary care appointments, laboratory tests, and referral appointments; and lack of proper health self-management. Such actions may appear to be noncompliance but may instead be the result of limited health literacy. Patients with limited health literacy often end up back in a physician's office with more serious conditions or, worse, in the Emergency Department (ED). Low health literacy costs the US health care system up to $73 billion annually.⁸

When patients are asked the yes-or-no question “Do you understand?” they may be embarrassed to admit that they do not. … ask patients to put the information in their own words to make sure that they understand.

Fortunately Jill was not pregnant. Had she become pregnant as a result of her misunderstanding of how to take the birth control pills, there would have been additional costs to the system as well as to Jill. Jill's physician probably made the assumption that Jill understood all of the information provided. Taking the time to check the patient's understanding during the office visit may save time in the long term by avoiding unnecessary hospitalizations, ED visits, phone calls, and additional health care appointments.

How to Ensure that Patients Understand

Most people with low literacy are very ashamed of it and therefore have become very good at hiding the problem. Many do not tell their bosses, coworkers, or even life partners.⁹ Patients with limited health literacy are well served by a psychologically safe environment so that they do not feel shamed. To achieve this, clinicians can tell patients ahead of time what to bring to the appointment. They can be told that they are welcome to bring someone with them to the visit. Staff members who are responsible for checking patients in should be friendly and helpful. The length and number of forms patients are asked to fill out should be limited. Finally, confidential assistance in filling out forms should be offered.⁶

Indications that patients have limited health literacy may include incompletely filled out forms; frequently missed appointments; poor compliance; inability to identify the name, purpose, or timing of a medication; and not asking any questions. A patient's reaction to written materials can raise concern about literacy skills: A patient with low literacy might say, “I forgot my glasses at home,” and ask the physician to read the materials aloud. The patient might say that s/he will take the materials home to read or to show to a spouse or child.¹⁰ If patients exhibit these red flags, physicians should be aware that they may need greater assistance in understanding information related to their health.

For greater clarity and understanding, written materials should be created in a patient-friendly manner. This means using simple words, short sentences in bulleted format, and lots of white space. Medical jargon should be avoided and simple pictures should be used when helpful. Emphasis should be on what the patient should do; unnecessary information should be avoided.⁶

Physicians must encourage open communication with patients. All patients—not just those with limited health literacy—can benefit from clear communication practices. When conveying information verbally, physicians and staff should communicate in key points, avoiding excessive information; most patients will not remember more than three messages. It is important to speak slowly and avoid medical jargon. Use analogies for common things—a patient might better understand joint problems if joints are compared with hinges. Reading handouts with the patient, highlighting and circling important parts, and encouraging the patient to ask questions are also helpful tools.⁶

An important component of creating a psychologically safe environment is fostering an atmosphere in which questions are welcomed. A helpful communication tool for both physicians and patients is Ask Me 3.¹¹ Created by the Partnership for Clear Health Communication (National Patient Safety Foundation, North Adams, MA), this tool specifies three essential questions to which patients should know the answer after every health care encounter: 1) What is my main problem? 2) What do I need to do? 3) Why is it important for me to do this? When clinicians use posters and brochures found on the Ask Me 3 Web site, patients are encouraged to ask these three questions and physicians are reminded to structure information conveyed to patients around these questions. Patients are empowered when they are invited to ask questions and encouraged that physicians want them to understand their own health care. Jill's physician could have used the Ask Me 3 technique as follows:

1. Jill, you have told me that you are having sex but you don't want to get pregnant.

2. To keep from getting pregnant, you must take one birth control pill every single day at the same time.

3. If you don't take the pills this way, you may get pregnant.

Jill's physician would then follow this with a teach-back. After clinicians have structured the information given to patients around Ask Me 3, one of the most effective ways that they can check for patient understanding is the teach-back method. When patients are asked the yes-or-no question “Do you understand?” they may be embarrassed to admit that they do not. Instead of doing this, clinicians can ask patients to put the information in their own words to make sure that they understand. Clinicians can do this by asking patients to tell them what they will tell their spouse or child about their condition or by asking patients to let them know what they heard so that the clinicians can make sure that they explained everything that the patients need to know. The teach-back incorporates recommended elements of adult learning—personalization, reinforcement, and multiple modalities.¹² The National Quality Forum recommends teach-back as a top patient safety practice,¹³ and using it has been found to be associated with better health outcomes.¹⁴ Had Jill's physician asked her to share her understanding of how to take the birth control pills, he would have realized that she had misunderstood. It is important that when checking patients' understanding of instructions, clinicians do so in a manner that does not embarrass patients. For example, Jill's physician could have said something like “Jill, you have told me that you don't want to get pregnant, so I want to make sure that I explained things clearly. Let's check how clear I was by having you tell me how you are going to take the pills.”

Conclusion

Limited health literacy can pose a risk to patient safety. Establishing awareness of the problem, committing to addressing the issue, and implementing communication changes in the health care environment can help ensure that patients understand their health issues and are competent in managing their care. Low health care literacy affects not only those with general low literacy but also individuals who may be extremely literate in their own areas of expertise but who have a problem understanding medical terminology. The most prudent approach is to always assume that your patient does not understand you or has a different perception of what you are saying. If Jill had been your patient, how would you have made sure that she understood how to take her birth control pills?

Disclosure Statement

The author(s) have no conflicts of interest to disclose.