Background Patient/family education is a cornerstone of palliative care. The ability to comprehend information from medication labels, appointment slips, and advance directive documents is often taken for granted. A report from the Institute of Medicine suggests that literacy – the ability to read, understand and act on basic health information – is limited in nearly half of American adults, or about 90 million people. The prevalence of poor health literacy – skills beyond basic literacy including an ability to integrate written, verbal, and contextual information to understand the most important elements of a medical condition and treatment plan – is almost certainly much higher. Health literacy problems span all socioeconomic domains. Prevalence is highest among underserved groups, those with limited education, and the elderly. This Fast Fact reviews assessment and management strategies for poor health literacy.

Clues to poor literacy Guilt and shame are common in those with poor literacy skills. In response, many may develop strategies to mask their needs. The first step in helping patients is to have a high level of awareness. Suspect literacy problems when patients:

• Do not look at written materials (or if handed materials up-side down do not turn them right-side up).
• Offer excuses when asked to read written materials (e.g., left their reading glasses at home).
• Identify medications by color/shape/bottle rather than name or reading the label.
• Take medications incorrectly (and cannot describe how medications should be taken).
• Have difficulty keeping appointments.
• Filling out forms incorrectly or incompletely.

Screening methods People with limited literacy skills learn to compensate. Research suggests that even though patients with limited literacy skills are masters in disguising their needs, they are often honest to health care professionals if the professional directly addresses the issue: “Is there anything that would make it hard for you to learn today? Do you have any trouble seeing, or hearing, or reading?” You can ask patients to read from a prescription label or educational brochure. You can say, “Some patients have difficulty with text, maybe because it’s too small or because it’s too complicated, or because they just have trouble reading. This is important to your health, so I want to make sure you understand. Would you please look at the first few words and tell me what they say?” If there are doubts about comprehension, one can follow with, “Explain to me what this means to you?”

Management strategies

• Written materials: When possible, use materials with large print and simple language. The National Work group on Cancer and Literacy recommends written materials to be at or below the 5th grade level. Pictograms can improve comprehension and memory of instructions.
• Verbal communication: Many patients with poor written literacy also have poor oral literacy. All patients – but especially those with limited literacy – can struggle with medical jargon, basic numeracy, and unfamiliar concepts. Plan to spend extra time; slow down your rate of speech, use simple, common words and short sentences. When possible, limit information to a maximum of three key items; consider tape/digital recordings of conversations for later reference.
• Medication regimens: Simplify regimens; minimize the number of medications, the number of pills, and the frequency of administration. Fill several pill boxes for patients.
• Cultural considerations: Recognize and address when cultural frameworks or limited English proficiency impact patient understanding.

Assure comprehension In palliative care settings, health literacy may include understanding diagnosis, prognosis, treatment goals, and treatment options. It may also include understanding the different roles of specialists and team members. When discussing broader palliative care-based topics with patients, use the Teach-back technique: explain instructions to a patient and have them teach them back to you, repeating until they demonstrate satisfactory understanding. Use open-ended phrasing such as, “Please explain to me how you’re going to take this medication,” rather than, “Do you understand how to take this medication?” Elicit questions: patients with limited literacy tend to ask few questions and therefore are at risk of receiving incomplete clinical information. Invite questions using an open-ended format, “What questions do you have?” Enlist allies: ask office staff, caregivers, and pharmacists to educate, assist, and support when necessary. In end-of-life situations, literacy of key caregivers may need to be assessed. Follow-up: plan on more frequent visits and telephone follow-up calls. Refer: for patients with a prognosis of at least several months, working with an adult literacy program can improve skills and heighten self-esteem. The nonprofit ProLiteracy (www.proliteracy.org) has over 1,000 affiliates in the US and is represented in every state.

Finally, work to create a shame-free environment; educate your staff about compassionate care for patients with limited literacy.

References

1. Baker DW, Williams MV, Parker RM, et al. Development of a brief test to measure functional health literacy. Patient Educ Couns. 1999; 38(1):33-42.
2. Davis TC, Long SW, Jackson RH, et al. Rapid estimate of adult literacy in medicine: a shortened screening instrument. Fam Med. 1993; 25(6):391-395.
3. Davis TC, Williams MV, Marin E, et al. Health literacy and cancer communication. CA Cancer J Clin. 2002; 52(3):134-149.
4. McCray AT. Promoting health literacy. J Am Informatics Association. 2005; 12:152-163.
5. National Assessment of Adult Literacy. A first look at the literacy of America’s adults in the 21st century. National Center for Education Statistics. U.S. Department of Education. Institute of Education Sciences. NCES 2006-470.
6. Nielsen-Bohlman L, Panzer AM, Kindig DA (eds). Health Literacy: A Prescription to End Confusion. Washington, DC: National Academies Press; 2004. Available at: http://www.nap.edu/catalog/10883.html.
7. Parker RM, Ratzan SC, Lurle N. Health literacy: a policy challenge for advancing high-quality health care. Health Affairs. 2003; 22(4):147-153.
8. Praska JL, Kripalani S, Seright AL, Jacobson TA. Identifying and assisting low-literacy patients with medication use: a survey of community pharmacies. Ann Pharmacother. 2995; 39:1441-1445.
9. Ratzan SC, Parker RM. Introduction. In: National Library of Medicine Current Bibliographies in Medicine: Health Literacy. Selden CR, Zorn M, Ratzan SC, Parker RM, eds. NLM Pub. No. CBM 2000-1. Bethesda, MD: National Institutes of Health, U.S. Department of Health and Human Services; 2000.
10. Wittenberg E, Reb A, Kanter E. Communicating with patients and families around difficult topics in cancer care using the COMFORT communication curriculum. Semin Oncol Nurs. 2018;34(3):264-273.

Version History: This Fast Fact was originally edited by David E Weissman MD and published in April 2006; 2nd version in April 2009; 3rd Version in July 2015; 4th Version by Mary Rhodes MD in June 2024.
Conflicts of Interest: None to report