Translate the following statement into plain English:*
“It is fruitless to become lachrymose over precipitately departed lacteal fluid.”1
If these words made you pause—even for a moment—you now have an inkling of what people of limited literacy confront when they deal with the healthcare system.
Health literacy is best defined as a patient’s ability to read, comprehend, and act on medical instructions and to make appropriate health-related decisions.2,3 It is closely related to, although not absolutely dependent upon, one’s overall level of literacy—and literacy problems are surprisingly widespread. According to the National Assessment of Adult Literacy (NAAL), a survey of more than 19,000 adults conducted in 2003 by the National Center for Educational Statistics and published in 2006, 36% of American adults have nothing more than basic or below basic literacy. People in these two categories might be able to sign their names, decipher a bus schedule, or read very simple instructions telling them what they can and cannot eat before a medical test, but they cannot read a juror information pamphlet, much less an informed consent form. Another recent survey suggested that about one-third of adults in public hospitals read at or below a sixth-grade level.4
Components of Health Literacy
Several components figure into a person’s ability to manage his health and engage the healthcare system. Literacy limitations can impair any or all of these factors, which include:
- Health promotion: reading and understanding product labels or articles in newspapers;
- Health protection: reading and understanding applications for insurance or following sanitary precautions in the workplace;
- Disease prevention and screening: obtaining information about flu shots and blood pressure maintenance;
- Ability to access care and navigate the system: determining the most appropriate healthcare provider to call when a problem arises or filling out forms correctly; and
- Routine care and maintenance: testing blood glucose and getting regular checkups.1
Health literacy is further complicated by the fact that it can fluctuate in the same individual at different times and under different circumstances. For example, you might have no trouble deciphering the sentence at the beginning of this article if you feel well and are reading it in your office, living room, study, or some other familiar and comfortable environment. Now imagine that you’re ill and sitting in a noisy, chaotic emergency department, with a sheaf of other forms and papers to plow through. Suddenly the statement above may not be as easy to interpret.
“We must leave behind the notion of ‘illiterates,’ ” says Lakshmi Halasyamani, MD, chair of the Hospital Quality and Patient Safety Committee for SHM. “A person may not normally have a literacy problem, but they may be overwhelmed by the medical terminology, or they simply may not feel well enough to comprehend immediately everything the doctor says to them.”
The changing nature of healthcare may exacerbate the problem. Thirty years ago, only 650 drugs were available, and the average hospital stay for a myocardial infarction was four to six weeks. Today, there are more than 10,000 prescription drugs alone, and the typical stay for a heart attack is two to four days. As healthcare grows increasingly fragmented and complex, doctors have less time than ever to explain things and answer questions for their patients. Nevertheless, patients are expected to shoulder an ever-greater portion of the responsibility for their care and to live with conditions like diabetes or congestive heart failure, which require aggressive and detailed management.5 This is a challenge for even the most highly educated person; for someone whose literacy skills are fragile, the task can seem hopeless.
In addition to its medical and emotional consequences, limited health literacy is estimated to cost U.S. society $50 to $73 billion per year.6
Who Is Most Likely to Have Literacy Problems?
In general, “the likelihood of low literacy increases in racial and ethnic minority groups, patients with language barriers, and those with low educational achievement,” says Benjamin Powers, MD, associate professor of general internal medicine at Duke University and a physician at the Durham Veterans Affairs Medical Center in North Carolina.
It’s no surprise that literacy overall, and health literacy specifically, correlate so closely with education and especially with the lack of a high school degree. What is perhaps more surprising is that educational achievement alone does not necessarily guarantee good health literacy.
“Even high school graduates may have trouble,” says Mark Williams, MD. In addition to being a professor of medicine and director of the hospital medicine unit at Emory University School of Medicine in Atlanta, Dr. Williams is the editor of the Journal of Hospital Medicine and has studied health literacy problems for years. “Some highly literate people may have problems reading or absorbing health-related information if they’re sick and not feeling well.”
These people are not illiterate in the conventional sense, but they may have inadequate functional health literacy skills, at least in certain settings.
Age is another risk factor. In one survey of Medicare enrollees, at least one-third of people age 65 or older had some degree of health illiteracy, Dr. Williams says. As with so many other skills, proficient reading requires regular practice, and people tend to read less as they age, so their literacy skills may decline. “It’s especially a problem for the ‘oldest old,’ people who are 75 years old or more,” he explains.
Language and cultural differences also enter into the equation. A patient may be well educated and able to articulate in her own language (perhaps even able to converse well in English under normal circumstances), but may be unfamiliar with medical terminology. Put her in a situation in which she feels ill, flustered, and disoriented, and her communication skills may deteriorate even more, says Dr. Halasyamani.
In short, health literacy consists of many components, including “an emotional overlay, information overload, and cultural overload. All of these factor into the patients’ ability to understand what we tell them,” says Barbara DeBuono, MD, MPH, senior medical advisor on U.S. Public Health and Policy at Pfizer Pharmaceuticals.
Issues Unique to Hospitalists
There are also a few issues unique to hospitalists and their patients, warns Dr. DeBuono, who is also on the board of the Partnership for Clear Health Communication (See “Ask Me 3,” at right.) “Hospitalists don’t necessarily have a long-term relationship with these patients, so they have to make a quick assessment of the patient’s ability to understand and absorb information. Then they have to determine the best way to communicate that information, and, when necessary, change their communication strategy to fit the circumstances.”
In addition, she says, “hospital patients usually are more complicated than patients seen in an office practice. They may have chronic conditions and several comorbidities, and the information and discharge instructions the physicians give them can be pretty complex.”
Indeed, “a patient may come in thinking she had no issues and leave the hospital with four or five complaints. We’ve rocked her world, and that can be overwhelming for even the most motivated person,” says Dr. Halasyamani, who cautions that any chronic illness that requires a significant amount of ongoing self-care, such as diabetes or heart failure, can tax a patient’s ability to completely understand her situation and coordinate her care effectively.
Patients with multiple and complex morbidities also are likely to be cared for by several physicians, who prescribe numerous drugs, tests, and procedures, and who don’t necessarily know what the other members of the care team are doing. Even highly sophisticated people can get the feeling that they’re caught in an ever-changing kaleidoscope of medical visits and jargon, in which the various fragments never coalesce into a comprehensible whole. As Dr. Powers and coauthor Hayden Bosworth, PhD, wrote in a recent editorial: “ … there may be specific physician and health system organizational factors that exacerbate or mitigate the impact of low literacy. Literacy may matter more for patients who are cared for in a chaotic and discontinuous system that is not organized around delivering high quality care in a multidisciplinary setting.”7
This is more than a subjective impression: There is evidence supporting the importance of coordinated care for people of limited literacy skills. Dr. Powers and Bosworth recently compared the impact of low literacy on blood pressure control in patients in the Veterans Affairs (VA) system and those who attended local community clinics.
“Although the prevalence of low literacy was high in both populations, there was a significant association with low literacy and poor blood pressure control in the community clinics but not the VA,” Dr. Powers tells The Hospitalist. “In other words, literacy seemed to be an important predictor of good blood pressure control in one healthcare setting but not in another.”
In hospitals, “the frequency of handoffs among doctors, nurses, caseworkers, and social workers may all contribute to the fragmented nature of a patient’s care,” warns Dr. Halasyamani. This may be exacerbated even further should the patient have the misfortune to be admitted during a transitional period, such as a weekend or the end of the month when staff members rotate.
Literacy limitations are easy to miss: Patients rarely announce that they can’t read forms or comprehend a clinician’s instructions. “Just asking, ‘Do you understand?’ rarely works, because the patient may just nod yes. Physicians need to assess the patient’s comprehension proactively,” says Dr. Williams.
Usually, the clues are subtle. “Most physicians do encounter such patients, but we’re not trained to detect literacy problems and respond appropriately,” says Sunil Kripalani, MD, MSc, who, like Dr. Williams, is an Emory University hospitalist with a special interest in patient literacy issues. Dr. Kripalani suggests looking for red flags, including:
- Vague or evasive answers to questions. For example, “the patient who is taking a host of medications but can’t name them or tell you what time of day he’s supposed to take them;”
- Few, if any, questions or discussions of concerns: “Patients with limited literacy are less prone to ask questions, and the questions they do ask may not be as deep as those asked by a patient with greater literacy skills. The patient may use very simple terminology and not integrate any of the concepts discussed during the appointment;” and
- Missed appointments and repeated crises and hospitalizations resulting from the patient’s inability to read appointment cards or manage his illness. “Limited literacy skills may be a contributor to the exacerbations that put the patient in the hospital,” says Dr. Kripalani.
A patient with few family or social connections is also cause for concern, adds Dr. Halasyamani: “Lack of social support means there’s not another set of eyes and ears taking in the information.” Yet another red flag to her is the patient who cannot describe his plans for pursuing his care at home.
When patients have their medications with them, Dr. Williams asks how they take them. Those who can read simply look at the label, but a patient with literacy problems must open the bottle and look at the pills to identify them.
How can physicians ensure that these patients understand and can follow instructions? Perhaps the easiest and most effective way is the “teach-back” approach, in which you ask the patient to repeat or teach back to you what you’ve just explained to him. For example, you might have him show you how to use an asthma inhaler or how to measure his blood glucose. In this way, you can rapidly assess and correct any deficiencies in the patient’s understanding.
“I’ve seen it take less than 90 seconds for physicians to confirm patient understanding in the context of a clinical visit,” says Dr. Kripalani.
A related technique that might help save time is to resist the temptation to tell the patient too much in a single visit. “Don’t try to give the patient too much information,” he advises. “People can process and retain maybe three nuggets of information at a time, so tell the patient the three most important things and then confirm their understanding of those three things.”
Dr. DeBuono suggests using visual aids like pictures or cartoons to help get important points across. If written material is necessary, have it printed in large type, which might appear less daunting than a page covered in dense, tiny print.
Above all, never embarrass a patient by bluntly asking him if he can read. “Explore the issue sensitively and respectfully,” Dr. Williams says. “Ask if they ever struggle with written materials or what the best way is for them to learn.” Adds Dr. DeBuono, “just by being sensitive to the fact that the patient may not understand is half the game.” TH
Norra MacReady is a medical journalist based in Southern California.
*“There’s no use crying over spilt milk.”
- Rudd RE. Literacy and implications for navigating health care. Harvard School of Public Health: Health Literacy Website. Slide 20. 2002. Available at www.hsph.harvard.edu/healthliteracy/slides/2002/2002_01.html. Last accessed December 1, 2006.
- Schillinger D, Grumbach K, Piette J, et al. Association of health literacy with diabetes outcomes. JAMA. 2002 Jul 24;288(4):475-482.
- Paasche-Orlow MK, Schillinger D, Greene SM, et al. How health care systems can begin to address the challenge of limited literacy. J Gen Intern Med. 2006 Aug;21(8):884-887.
- Marcus EN. The silent epidemic—the health effects of illiteracy. N Engl J Med. 2006 Jul 27;355(4):339-341. Erratum in N Engl J Med. 2006 Sept 7;355(10):1076.
- Williams MV. Recognizing and overcoming inadequate health literacy, a barrier to care. Cleve Clin J Med. 2002 May;69(5):415-418.
- Weiss BD. Health literacy: a manual for clinicians [American Medical Association Web site]. American Medical Association Foundation and the American Medical Association, 2003. Available at: www.ama-assn.org/ama1/pub/upload/mm/367/healthlitclinicians.pdf. Last accessed December 16, 2006.
- Powers BJ, Bosworth HB. Revisiting literacy and adherence: future clinical and research directions. J Gen Intern Med. 2006;21:1341-1342.
Just asking, “Do you understand?” rarely works because the patient may just nod yes. Physicians need to assess the patient’s comprehension proactively.—Mark Williams, MD, professor of medicine and director of the hospital medicine unit at Emory University School of Medicine, Atlanta.