The 64-year-old patient had not taken his diabetes or heart medications for weeks, and no one at the hospital knew why. A former handyman and gas station attendant born in the rural South, the patient was alert with no signs of dementia. He wanted to get well, and he was getting his medicines at a reduced cost.

His doctors reviewed the medicines, frequencies, and dosages with him, but five months later he showed up at a community clinic. This time he said he was taking the medications, but wasn't sure of their names or how often he took them. His doctors again reviewed the regimen and asked the man to keep a blood sugar log. When the patient returned two weeks later for a follow-up appointment, a medical student looked over "the jumbled mess of his glucose log" and made a new diagnosis: illiteracy. Hesitantly, the patient confirmed that he had never learned to read.

This story, recounted by Erin N. Marcus, MD, in the New England Journal of Medicine, is a classic example of the potentially devastating health effects on patients who are unable to read. "We were stunned," Marcus writes. "We had tried to avoid jargon and to use simple language in explaining our instructions, and he had seemed to understand everything we had told him. He had seen scores of doctors, nurses, and social workers over the years, without anyone guessing that he had a reading problem."

Thanks in part to shocking stories like this, "health literacy" has become a key issue among health care professionals. Often, the discussion centers on patients' ability to understand health-related concepts, to be literate in the specific parlance of health care. But, as the painful example above reveals, a fundamental piece of the puzzle is literal literacy: basic reading and language skills. If these aren't in place, the task of deciphering doctor speak becomes virtually impossible.

According to the National Assessment of Adult Literacy, roughly 30 million US adults may fall into this category, reading at "below basic" levels. Another 11 million are "nonliterate," meaning they are unable to read or answer simple literacy test questions, or could not take the test because of language barriers. That doesn't mean, of course, they are any less intelligent than people who can read a newspaper from cover to cover. People with low reading levels may have a learning disability like dyslexia, which makes it hard to read. They may not speak English well, or may have difficulty reading it. And some people born here may not have gone to school long enough to learn how to read well.

Just as students sometimes go through schooling without learning to read, so too patients can slip through the medical system, especially when you consider how little face-to-face time they get with health care providers these days.

The AMA Foundation, an arm of the American Medical Association dedicated to public health education, took up the health literacy cause in 1998. As part of its initiative, the foundation recorded two videos featuring interviews with patients who have low literacy. They provide a glimpse into what actually happens once a patient walks out the door, the woeful gap between what the doctor thought he or she conveyed during the visit and what the patient perceived. The chasm is often startling.

In an extreme example, one of the videos follows Toni Cordell, now in her 60s, as she describes a visit to her gynecologist 30 years ago. Cordell, now a film producer who graduated from high school with a 5th-grade reading level, went to her doctor because her uterus was protruding outward. The doctor told her, "We can repair that." Today, she says she believes that her uterus was "collapsed." It felt like it was bulging and needed to be repaired.

"I just assumed it could be tacked up, and the term 'easy repair' was something that made sense to me," Cordell said in a recent interview, "I'm a seamstress. I could envision placing something that was falling into a better position, giving it some sort of support, I guess."

But that's not what she got.

When she returned for the procedure, she was presented with a number of papers to read and sign. "To me it was lines and circles over sheets and sheets and sheets," says Cordell. "I wasn't going to reveal my sense of stupidity, so I signed everywhere they told me to sign, and never read it." In her follow-up office visit, the nurse said, "How are you feeling since your hysterectomy?" Cordell was stunned. "I thought to myself: 'How could I be so stupid as to allow somebody to take part of my body -- and I didn't know it?' "

While the experiences detailed in the videos are telling, researchers have also identified a distinct statistical link between poor literacy and health problems. "All research shows poorer outcomes for people with low literacy," says Joanne Schwartzberg, director of aging and community health at the American Medical Association. A report in the American Journal of Public Health suggests that patients with poor literacy are more likely to report being in poor health, and a study at Atlanta's Grady Memorial Hospital found that functionally illiterate patients were twice as likely to be hospitalized.

More immeasurable are the uncounted individuals who avoid the doctor altogether because they're intimidated by the paperwork and forms. In one of the AMA videos, a woman named Mrs. Walker, who reads at a third-grade level, says, "As a first-time patient, they give you a clipboard and a questionnaire... that is very discouraging for a patient who can't read."

Mr. Bell, another patient interviewed for the AMA videos, explains: "The first thing you have to do is fill out forms, and your heart beats real fast. You want to walk out -- I have."

Even those who muster the courage to enter the waiting room have likely developed a knack for hiding their problem. Avoiding humiliation is a powerful motivator. In an Emory University study that examined 58 patients with low literacy, almost 40 percent said they felt shame about their reading level, and more than two-thirds had never told their spouses about their struggles, while nearly a fifth had never told a soul.

Schwartzberg calls the element of shame "an incredibly large" obstacle to effective health care. It speaks to a larger problem, she says: "The shame of not being a reader in modern society... holds you back in all kinds of things." Embarrassed patients develop all manner of tricks to protect themselves. "We learn how to hide it," says Mrs. Walker. "The shame that goes with it is devastating, so the last thing in the world you want is an intelligent doctor to know you have any problem."

Doctors may not be attuned to these self-protective tactics -- and they are often elaborate. Some people who can't read well are so adept at masking it that they have managed to get jobs that would otherwise be out of their reach. A report by the Labor Occupational Health Program at the University of California at Berkeley documented some astonishing examples: a licensed vocational nurse who used a list hidden in her pocket to decipher patient charts; a chemical mixer at a film lab who developed his own pictorial clues for storing chemicals correctly; an employee at a large nuclear facility who worked his way up the ranks to the position of supervisor and oversaw a training program. As the AMA Foundation's video title goes, "You can't tell by looking."

Changes in modern health care have also played a role in putting low-literacy patients in peril. Shorter office visits, challenging reading material, and complicated prescription regimens all contribute to the growing problem, says Schwartzberg.

"Thirty-five years ago, when you had a heart attack, you were plunked in a bed for six weeks," she explains. "We didn't have very many drugs to give them... they spent lots of time talking to nurses." By the time they left the hospital, she says, they knew everything there was to know about their condition and medications. Today, this same patient would be sent home in two to four days with at least 10 prescriptions and a binder full of reading material. "We have a very unforgiving system at the moment -- for all patients. We used to give them lots more help... now we expect people to be able to teach themselves."

Such expectations are unrealistic in part because of the way doctors talk to patients. As Mrs. Walker, the patient profiled in the AMA Foundation video, puts it, "They're using words you don't really know. Most doctors are presuming everybody's as [educated] as they are. That is just not the case." She describes leaving the exam room thinking, "God, I hope I don't make a mistake with my medicine, because I did not understand anything he was saying to me."

It can be argued that the trend toward consumer-driven health care -- a new generation of proactive patients armed with Internet research and eager to be involved in decisions about their care -- is generally a good one. But assumption of patients' medical savvy can work against those lacking basic reading skills, According to Dr. Ruth Parker, professor of medicine at Emory University, doctors should be wary of coming to expect this from all patients. "We're so much in the mode of efficiency, clinically, that the burden is on the patients to take care of their health," she says. "We are not in an environment that encourages people to speak and say, 'I know you told me this, but I don't understand it.'"

Part of the problem may lie with some doctors' attitudes toward patients, says Parker. Patients who are not communicative during appointments or fail to follow their treatment regimen are essentially blamed for their behavior. They’re thought of as "noncompliant, not interested, patients who just nod their heads and don't ask questions," says Schwartzberg, who notes that she herself had to reexamine how she interpreted patients' responses. "We were completely misunderstanding the problem. Our problem was [that] we were not being clear. If we are clear, then we have good outcomes."

But Schwartzberg says there is still a lot doctors can do, even within the streamlined, brusque parameters of modern health care. She advocates being "very concrete" with patients about three specific things: "What is the problem? What do I need to do? Why is it important for me to do it?" Both Parker and Schwartzberg endorse this "teach-back" method, which Schwartzberg boils down to this: "Tell me in your own words what we've been talking about." After all, once at home, it's the patient's translation of her doctor's words that will determine how she cares for herself. Another approach is to ask patients what they'll tell their spouse about the visit when they get home.

New patient-focused approaches and the teach-back technique have produced positive results. A University of North Carolina study of patients with type 2 diabetes found that those treated with a rigorous disease-management program tailored to low-literacy individuals fared far better than those in a control group. Those in the targeted program, which relied on the teach-back method, picture-based materials, and mainly verbal patient education, were more than twice as likely to maintain desirable blood sugar levels.

But patients too must show initiative, says Parker. "The message for patients is: If you have trouble understanding, you need to realize you're not alone. Patients need to get in the habit of feeling that it's really important for your health to ask questions." Asking doctors to slow down when they're speaking and requesting that they phrase things in "living room language" are two ways patients can help them understand.

They should also not feel shy about bringing a family member with them to lend another set of ears, especially if that relative is literate and there is potential for miscommunication. And if doctors can meet them halfway by fostering an "attitude of helpfulness," hopefully patients will be less inclined to feel shame and embarrassment when they aren't following the discussion or can't read forms. "It's something that needs to be put out there and dealt with openly," says Mrs. Walker. "Shame is something you have to rise above, because if you don't, you'll be a prisoner all your life."

-- Benj Vardigan, the former managing editor of Consumer Health Interactive, is a freelance writer based in Oakland. His series on the supplement ephedra earned the award of Outstanding Young Journalist from the Northern California chapter of the Society of Professional Journalists.

References

Last updated July 14, 2009
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