Illiteracy Can Be Hazardous to Your Health

Robert Ballesteros sometimes dreads going to the doctor. The minute he walks into the office, he’s barraged with forms and medical advice he has great difficulty comprehending.

“It’s all so confusing,” says Ballesteros, a 58-year-old retired construction worker who reads at about a third-grade level.

The Los Angeles resident managed to muddle along most of his life despite his limited reading skills, but in the last few years, he has developed several chronic conditions, including diabetes and emphysema. Now he takes six different medications each day to keep his illnesses in check and must see his doctor regularly. He reluctantly relies on his daughter-in-law, who’s a nurse, to help him fill out insurance forms, decipher medical instructions, read what’s written on prescription bottles, and run interference with his physicians.

“It’s embarrassing to have to ask for help,” says Ballesteros, a high school graduate who enrolled in a literacy program two years ago to improve his reading skills. “But the doctors are all on a schedule, and they don’t have time to sit and talk with me for five minutes.”

Ballesteros’ problem is surprisingly common. Nearly 90 million Americans, or roughly 46% of the adult population, are functionally illiterate when it comes to dealing with the health care system, according to a 1999 report in the Journal of the American Medical Assn.

Although 15% of those were born outside the United States and simply may not read English well, the biggest factor in health illiteracy stems from poor reading comprehension, the article says.

“Literacy is not just about reading words on a page, but being able to actually understand and apply that knowledge to perform tasks,” says Robert B. Friedland, director of the National Academy on an Aging Society, a nonprofit research foundation in Washington, D.C.

This low health care literacy means many adults can’t read directions written on prescription bottles, don’t have a clue about what’s contained in informed consent documents, don’t adhere to regimens for chronic illnesses, fail to return for needed follow-up care and don’t make the necessary preparations for complicated diagnostic procedures because they misunderstand written instructions.

“We used to think these patients were uncooperative,” says Dr. Ruth Murphey Parker, an associate professor at Emory University School of Medicine in Atlanta and a pioneer in the field of patient literacy. “Now we realize that they don’t have the skills needed to read, understand and act on basic health care information.”

The net result is that even though patients may have the best intentions, they fail to comply with the doctor’s orders. One 1995 survey conducted at Emory University School of Medicine and Harbor-UCLA Medical Center in Torrance revealed that patients who read poorly were five times more likely to misinterpret their prescriptions, which can have serious health consequences. Other research indicates that people who suffer from diabetes, ulcers, high blood pressure and arthritis are more inclined to stick with their treatment regimens, and get better, if they genuinely understand their care, while just the opposite is the case if they don’t.

Low literacy skills, according to figures compiled in 1998 by the National Academy on an Aging Society, cost the U.S. health care system anywhere from $30 billion to $73 billion annually in extra doctors’ visits, more hospitalizations and longer hospital stays.

“I’ve had diabetes patients on a strict treatment plan who don’t get any better and come back multiple times simply because they misunderstood what they were supposed to do,” Parker says. “The same holds true for asthma patients who don’t use an inhaler correctly--they often end up in the emergency room in a medical crisis because they can’t follow directions.”

Compounding the problem is the fact that health care illiteracy is most pronounced among the patient populations that use the medical system the most: the elderly, some of whom came of age when formal schooling wasn’t as important, and the chronically ill, whose ailments often limit their access to education.

People Often Hide Their Poor Reading Skills

Experts readily concede they are only now beginning to get a handle on the magnitude of the problem, which could be even more widespread than they imagine.

“We have a limited sense of how great this problem is,” says Stephen A. Somers, president of the Center for Health Care Strategies Inc., a health care policy research firm in Princeton, N.J. “People don’t talk about it because of the shame associated with low literacy.”

In fact, according to one 1996 poll, more than two-thirds of people who read poorly are so embarrassed they don’t even tell their spouses, and they become quite adept at hiding their problem through elaborate subterfuges.

“I’d tell the doctors I forgot my glasses,” says Ballesteros, “or I ‘accidentally’ left the forms they wanted me to fill out at home.”

Right now, there’s only a fragmented, patchwork system to help patients with inadequate or marginal reading skills. A handful of hospitals and clinics across the country do have excellent patient education programs. Groups like the American Medical Assn. are taking the first tentative steps toward raising public awareness and finding some solutions.

“The challenge is to devise simple, cost-effective methods of communication and to find ways to identify patients who need help without shaming them,” says Dr. William H. Mahood, past president of the AMA Foundation, the philanthropic arm of the AMA.

Generally, though, few health care providers--doctors, clinics, HMOs, hospitals--even realize there’s a problem. And in this era of assembly line medicine, when harried physicians are forced to squeeze in as many as 35 patients a day, it’s easy for patients who don’t understand to just get shuttled along.

“Doctors are rewarded for avoiding referrals, not for spending extra time with patients to answer lingering questions,” Friedland says.

But navigating the difficult terrain of this country’s health care system, particularly when you’re not well, can be daunting for even skilled readers. For those with limited reading abilities, it becomes a labyrinth of confusion.

Busy doctors often lapse into incomprehensible medical lingo, operating on the erroneous assumption their patients understand what they’re saying; instructional materials and prescription drug inserts are often written at a 10th- to 12th-grade level; diagnostic tests are infinitely more complicated; and patients are now expected to take a more active role in their own care.

“As recently as 10 years ago, if you had a heart attack, you’d recuperate in the hospital for a couple of weeks,” Parker says. “Now, you’re sent home in a few days with a fistful of medications and an armload of instructions on lifestyle modifications, and you’re supposed to just go out and do them.”

Then, when patients return repeatedly because they didn’t stick to a treatment plan, often careening from one medical crisis to the next, their physicians blame them for their continued health problems, and mentally write them off.

THE Clinic Helps Patients Cope

There are some places, however, where patients do get the help they require. THE (To Help Everyone) Clinic, for example, a nonprofit medical center geared to low-income patients in the Crenshaw district of Los Angeles, has a 26-person support staff, all of whom speak at least one language other than English, such as Spanish or Tagalog.

When patients walk in the door, instead of simply handing them a clipboard with a lengthy medical questionnaire, someone sits with them and helps them fill out the forms.

“We help our patients at every stage--when they initially come in, with financial screening and with follow-ups after doctor’s visits,” says Sylvia Drew Ivie, executive director of THE Clinic, which has been in business for more than 26 years. “We firmly believe that if you don’t provide this kind of support along with the medical care, then you might as well not even bother to give the care at all.”

THE Clinic also sponsors community outreach prenatal care and HIV prevention programs geared toward teenage girls, and uses videotapes, cartoons, graphics and other visual aids to illuminate key points.

“We constantly ask ourselves how we can get our message across in the most attractive, effective way, that requires the least amount of reading,” Ivie says.

Staff members, generating much of their own educational material, use a similar approach to illustrate how patients should take their medicine.

The clinic’s methods, which have been used as a model by health care educators across the country, seem to work. Follow-up studies indicate that the clinic’s patients have fewer low-birth-weight babies than the national average, and participants in the HIV awareness program have far lower infection rates, Ivie says.

Devising strategies to educate patients may seem like adding another expensive service at a time when HMOs are seeking ways to cut costs. But improving patient awareness can generate considerable savings over the long run.

One infant at UCLA Medical Center, for example, suffered from a serious intestinal disorder and was unable to absorb nutrients from his food, requiring special intravenous feedings to stay alive. Physicians hadn’t considered home therapy because they didn’t think the mother, a shy woman who didn’t speak English, could cope. So the child remained in the hospital, racking up astronomical medical bills--not to mention the psychic toll it took on him to be away from home.

“Nobody had bothered to assess [the mother’s] capabilities,” says Laurie Reyen, a clinical nurse specialist who co-chairs the Patient Education Committee at UCLA Medical Center. “But when we provided her with the information in Spanish, and in a way that she could understand, she turned out to be a marvelous caregiver, and we were able to send her son home.”

That was nine years ago. Today’s he’s a normal, active fourth-grader, says Reyen, “which might not have been the case if the mother hadn’t been able to cope.”

Instructions Can Be Confusing to Anyone

Even educated professionals can have trouble comprehending complex medical jargon, especially when they’re in the midst of a possibly life-threatening situation.

Ann Kinkor, a former teacher who is now a coordinator for the Los Angeles County Office of Education, knows how disorienting such a crisis can be. When her son, Patrick, had an uncontrollable epileptic seizure in class, she rushed him to the hospital in a total panic.

“The doctors were giving me instructions I couldn’t read, and using medical acronyms and terminology that I didn’t understand,” recalls Kinkor, whose son’s condition is now stabilized. “But when I tried to get some answers, one neurologist curtly informed me that he didn’t have the time to answer all my questions. It was a nightmare, and I didn’t sleep for two days. Now I insist doctors tell me in lay language what various tests mean, what the medications are all about and how they impact on my son’s seizures.”

Still, it’s tough to buttonhole your doctor and ask for lengthy explanations when you’re sitting on an examining room table swathed in a flimsy paper gown while she’s impatiently glancing at her watch.

“Bring a friend or family member with you when you go to the doctor,” suggests Robin DiMatteo, a professor of psychology at UC Riverside who has studied doctor-patient relationships. They can provide moral support, ask questions you were too intimidated or distracted to pose, and fill in the information you may not have absorbed.

Also:

* Bring a paper and pen and be prepared to take notes.

* If the explanation is complex, have your doctor write it down for you.

* For an initial session, bring along all your medicines, including any over-the-counter remedies, so you won’t forget the names or doses.

* Don’t be afraid to ask questions, or request background materials on your health condition to take home and study when you’re feeling less pressured.

* Other health care professionals--nurses, office staff, pharmacists--can also be an excellent source of information. Ask them for help with written materials.

“Have them identify the most important things you need to know,” Dimatteo says. “This does require some assertiveness. “But your health may be at stake, so don’t be intimidated.”

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Reading Skills

The National Adult Literacy Survey, undertaken in 1992 for the U.S. Department of Education, defined literacy as “using printed and written information to function in society.” But the survey showed that:

* 21% of adult Americans (40 to 44 million people) read at or below a fifth-grade level.

* An additional 25% of adults (50 million people) are only marginally literate.

Communication

In a 1995 survey of 2,659 low-income outpatients at two public hospitals:

* 26% did not understand when their next appointment was scheduled.

* 42% did not understand instructions to “take medication on an empty stomach.”

* 49% could not determine whether they were eligible for free care from reading a hospital financial aid form.

Source: Journal of General Internal Medicine

Impact

* Among adults who stayed overnight in a hospital in 1994, those with low health literacy skills averaged 6% more hospital visits and stayed in the hospital nearly two days longer than adults with higher health literacy skills.

* Among adults with at least one doctor visit in 1994, those with low health literacy skills had on average one more doctor visit than adults with higher health literacy skills.

* When self- reported health status was taken into account, patients with low health literacy skills had fewer doctor visits but used substantially more hospital resources.

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Source: National Academy on an Aging Society