Many people have trouble understanding the medical conditions they have, the medications they take and the medical consent forms they have to sign.
That’s an issue of “health literacy.”
The term is not just a metaphor, because a big factor in health literacy is basic reading ability. According to Georgia’s Task Force on Adult Literacy, one out of three adult Georgians is functionally illiterate. In the Augusta area alone, there are more than 65,000 adults whose basic educational levels may be less than those of the average eighth-grader, according to Augusta University’s Literacy Center.
Without a clear understanding of their health condition, these adults are more likely to skip necessary medical tests and have a harder time with diabetes management or high blood pressure numbers. This leads to increased emergency room visits, according to the National Action Plan to Improve Health Literacy.
They also tend to make mistakes with medications, which is a potentially fatal problem.
Only 12 percent of U.S. adults have “proficient” health literacy skills needed to manage the demands of our complex health care system, according to the Agency for Healthcare Research and Quality.
“And even those 12 percent may not absorb much when compromised by stress or illness,” says Don Rubin, chair of the Georgia Alliance for Health Literacy.
People can see and hear words, but if they aren’t familiar with them, it can quickly lead to misunderstandings. Not comprehending health care instructions is not only expensive — it can be dangerous.
Today, some accidental deaths suggest even well-educated patients are subject to health literacy failures and deadly misunderstandings.
When an intelligent, educated person is injured or otherwise impaired, or even distraught about the condition of a loved one, the normal ability to think rationally can disappear.
Johns Hopkins patient safety experts recently calculated that more than 250,000 U.S. deaths per year are due to medical errors. That number includes patients who accidentally mix their medications because of an inability to understand the directions they got from a busy doctor’s office or from a hospital’s discharge orders.
In an open letter to the CDC in Atlanta, the Johns Hopkins study says medical errors should rank as the third leading cause of death in the US.
This same study suggests that death can range “from surgical complications that go unrecognized, to mix-ups with the doses or types of the types of medications patients receive.”
But another problem faced by many medical professionals includes the number of patients whose first language is not English. As an example, DeKalb County has emerged as one of Georgia’s most culturally diverse communities with more than 64 languages representing Asian, Hispanic, European and African cultures. To address this situation, insurance companies are providing information in multiple languages where needed.
Free language-interpreter services may be available, along with large print, Braille and audio tapes.
The National Action Plan for Health Literacy is based on two principles:
1] Everyone has the right to health information that helps them make informed decisions;
2] Health services should be delivered in ways that are understandable and beneficial to health, longevity, and quality of life.
Experts say all patients should be asking more questions and checking with pharmacists for drug interactions. People who take multiple medications need to know what each one is for, whether it’s a prescription medication or something bought over the counter, and about any possible interactions.
Today, health literacy experts propose applying the principles of universal precautions to health communication with all patients.
For example, when blood is drawn, the procedure is handled the same way each time. The health care provider wears gloves for self-protection. And the patient is not asked any personal information, aside from the standard identifying data to label the blood sample. This protects the patient’s privacy.
Rubin urges the same universal precautions in medical literacy matters. “We can’t know which patients are challenged by health care information or how they might use medical advice,” says Rubin.
“Therefore we should simplify our communication and use evidence-based tools, such as ‘teach-back’ techniques with all patients.”
In Georgia, proponents of health literacy continue to help residents make informed decisions when it comes to health care information. In fact, Gov. Nathan Deal declared October as Georgia’s Health Literacy Month.
Georgia’s universities and medical schools have joined the health literacy movement, along with nurses, pharmacists and other health providers.
“Health literacy is an important tool for reducing health disparities and assuring better health and treatment outcomes,” says Oluwatoyosi Adekeye, research instructor at Morehouse School of Medicine in Atlanta.
“One of the areas that we’re interested in at Georgia State University is frontline or blue-collar employees,” says Iris Feinberg, assistant director at GSU’s Adult Literacy Research Center. “They are a population that is greatly understudied.”
“People who have hourly jobs, have health insurance and often times workplace wellness programs available to them, may have the greatest health needs,” says Feinberg.
She’s concerned about low socioeconomic status (SES) for many Georgians. Reading and writing skills are critical, she says, but “folks with low SES have been shown to have worse outcomes than those with high SES,” says Feinberg.
“Workplace wellness is a $6 billion industry, and yet it may not be reaching people on the lower end of the employment scale for lots of reasons — low health literacy skills may only be one of them,” says Feinberg.
Better collaborations with insurance and health industry brokers, employers and employees are what’s needed, she says.
Forms that read like gobbledygook
Erin Donovan, associate director of the Center for Health Communication at the University of Texas, says patient consent forms contain some of the most complex medical terminology that lay people will see. Patients are asked to read and sign these documents governing very important matters, even though the words can be almost as unfamiliar as a foreign language.
Donovan’s team conducted one of the largest experiments involving consent form comprehension ever published.
“Evidence shows consent forms do not adequately serve their purpose because they are too difficult for the average patient to understand,” she says in an essay, “Patients Are Signing Consent Forms They Don’t Understand: We Can Do Better.”
The problem varies from place to place. “Parts of the consent form fall under federal mandates, and other content is what’s approved by each state, adding to its complexity,” says Donovan.
As an example, the federal Centers for Medicare and Medicaid Services mandates the type of information that has to go into a consent document for Medicare or Medicaid, but the agency doesn’t actually mandate how that information is communicated, she says.
“There’s the form,” she says, “but then there’s the conversation that should take place before the patients ever sees the form.”
It’s the patient conversation with physicians that Donovan hopes to encourage. She is actively working with the new Dell Medical School at the University of Texas at Austin, to make informed consent conversations more effective.
“We found that the well-educated are really engaged in their care and tend to ask many more questions,” says Donovan. “Others don’t even know what questions they might have.”
Those are the people that don’t know what they don’t know and they just sign. “Sadly, there’s a divide there,” says Donovan.
Judi Kanne, a registered nurse and freelance writer, combines her nursing and journalism backgrounds to write about public health. She lives in Atlanta.