CreditCraig Frazier
Every time her parents pick up a new prescription at a Walgreens in Houston, they follow Duyen Pham-Madden’s standing instructions: Use the iPad she bought for them, log onto FaceTime, hold up the pill bottles for her examination.
Her mother, 79, and father, 77, need numerous medications, but have trouble grasping when and how to take them.
The label may say to take one pill three times a day, but “my dad might take one a day,” said Ms. Pham-Madden, 56, an insurance purchasing agent in Blue Springs, Mo. “Or take three at a time.”
So she interprets the directions for them, also reminding her mother to take the prescribed megadose of vitamin D, for osteoporosis, only weekly, not daily.
Part of their struggle, Ms. Pham-Madden believes, stems from language barriers. The family emigrated from Vietnam in 1975, and while her parents speak and read English, they lack the fluency of native speakers.
But recently, Ms. Pham-Madden said, her father posed a question that anyone grappling with Medicare drug coverage might ask: “What’s the doughnut hole?”
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Researchers refer to this type of knowledge as “health literacy,” meaning a person’s ability to obtain and understand the basic information needed to make appropriate health decisions.
Can someone read a pamphlet and then determine how often to undergo a particular medical test? Look at a graph and recognize a normal weight range for her height? Ascertain whether her insurance will cover a certain procedure?
Most American adults — 53 percent — have intermediate health literacy, a national survey found in 2006; they can perform “moderately challenging” activities, like reading denser texts and handling unfamiliar arithmetic.
Just 12 percent rank as “proficient,” the highest category. About a fifth have “basic” health literacy that could cause problems, and 14 percent score “below basic.” Health literacy differs by education level, race, poverty and other factors.
And it varies dramatically by age. While the proportion of adults with intermediate literacy ranges from 53 to 58 percent in other age groups, it falls to 38 percent among those 65 and older. The percentage of older adults with basic or below basic literacy is higher than in any other age group; only 3 percent qualify as proficient.
Why is that? Compared to younger groups, the current generation of “older adults were less likely to go beyond a high school education,” said Jennifer Wolff, a health services researcher at Johns Hopkins University.
Moreover, “as adults age, they’re more likely to experience cognitive impairment,” she pointed out, as well as hearing and vision loss that can affect their comprehension.
Consider the recent experience of a retired 84-year-old teacher. All her life, “she was very detail-oriented” and competent, said her daughter, Deborah Johnson, who lives in Lansing, Mich.
But a neurologist diagnosed mild cognitive impairment last summer and prescribed a drug intended to slow cognitive decline. It caused a frightening reaction — personality changes, lethargy, dizziness, sky-high blood pressure.
Ms. Johnson thinks her mother might have overdosed. “She told me she thought, ‘This is going to fix me, and I’ll be O.K. So if I take more pills, I’ll be O.K. faster.’”
Yet health literacy can be particularly crucial for seniors. They’re usually coping with more complicated medical problems, including multiple chronic diseases, an array of drugs, a host of specialists. They have more instructions to decipher, more tests to schedule, more decisions to ponder.
Low health literacy makes those tasks more difficult, with troubling results. Studies indicate that people with low literacy have poorer health at higher cost. They’re less likely to take advantage of preventive tests and immunizations, and more apt to be hospitalized.
It may not help much that future cohorts of older adults will be better educated. “The demands of interacting with the health care system are increasing,” Dr. Wolff said. “Ask any adult child of a parent who’s been hospitalized. The system has gotten increasingly complex.”
That doesn’t mean patients deserve all the blame for misunderstandings and snafus. Rima Rudd, a longtime health literacy researcher at Harvard University, has persistently criticized the communications skills of health institutions and professionals.
“We give people findings and tell them about risk and expect people to make decisions based on those concepts, but we don’t explain them very well,” she said. “Are our forms readable? Are the directions after surgery written coherently? If it’s written in jargon, with confusing words and numbers, you won’t get the gist of it and you won’t get important information.”
A few years ago, Steven Rosen, 64, had spent more than two months at a Chicago hospital after several surgeries. Then a social worker came into his room and told his wife Dorothy, “You have to move him tomorrow to an L.T.A.C.”
“I don’t know what you’re talking about,” Ms. Rosen recalled saying. “What’s an L.T.A.C.?”
Question: Was she demonstrating inadequate health literacy, or should the social worker have clarified that L.T.A.C.s — long-term acute care hospitals — provide more care than nursing homes for very ill patients?
Aware of such issues, health care organizations are scrambling to try to make information more accessible and intelligible, and to help patients of all ages understand an often bewildering environment.
They’re hiring squadrons of care coordinators and navigators (sometimes too many), and redesigning and rewriting pamphlets and forms. They’re teaching medical students to communicate more clearly and to encourage patients’ questions.
They’re turning to technology, like secure websites where both patients and family members can see test results or ask questions.
“It’s not the silver bullet we hoped for,” said Amy Chesser, a health communications researcher at Wichita State University, pointing out that many patients are reluctant to turn to provider websites. But the potential remains.
For now, though, often the primary health literacy navigators for older people are their adult children, most commonly daughters and daughters-in-law.
“In the best of all worlds, she’d just be the daughter,” Dr. Chesser said. “But we need her to serve other roles — being an advocate, asking a lot of questions of the provider, asking where to go for information, talking about second opinions.”
The current cohort of people over 70 grew up in a more patriarchal medical system and asking fewer questions, Dr. Wolff pointed out. Her research shows that while most seniors manage their own health care, about a third prefer to co-manage with family or close friends, or to delegate health matters to family or doctors.
Duyen Pham-Madden plays the co-managerial role from hundreds of miles away, keeping spreadsheets of her parents’ drugs, compiling lists of questions for doctors’ appointments, texting photos to pharmacists when the pills in a refilled prescription look different from the last batch.
She’d probably score well in health literacy, but “sometimes even I get mixed up,” she said.
What’s the Medicare doughnut hole? “I had to look it up,” she said. Once she did, she wondered, “How do they expect seniors to understand this?”
