Illness and health illiteracy
Recently, a young Spanish-speaking mother anxiously brought her weeping, 18-month-old daughter to our office. Through a translator, she told me her story. "My baby keeps waking up at night with fevers and ear pain after receiving antibiotics in the emergency room."
When I looked into the affected ear with my otoscope, I quickly recognized a pinkish liquid, with a sweet familiar scent - Amoxicillin - crusted inside her ear. Used three times a day. Just like the doctor told her, she said.
We delicately corrected her inappropriate use of the drug and explained that she should put it in her child's mouth instead of her ear.
Why should a devoted mother so misunderstand a doctor's instructions? This illustrates a widespread problem: poor health literacy.
"It is neither just, nor fair, to expect a patient to make appropriate health decisions and safely manage his/her care without first understanding the information needed to do so," declares the book Reducing the Risk by Designing a Safer, Shame-Free Health Care Environment.
In the United States, we spend the most in the world on health care - more than $8,000 per person. And yet, the World Health Organization in 2000 ranked the U.S. system 37th in overall performance, and 72d by overall level of health (among 191 nations studied).
Many factors are involved. One rarely mentioned is poor health literacy.
The government's standard of care, Healthy People 2010, defines health literacy as having three components. A patient must be able to obtain, process, and understand basic health information and services; make appropriate decisions; and access/navigate the system.
It's shocking how often this fails to happen. Take the mother who recently brought her 3-year-old son in for a follow-up visit from an asthma hospitalization that almost killed him.
In reviewing his drugs, his mother was confused about which medicine was his "daily" controller (Flovent) and which was his rescue medicine (Albuterol). She also didn't understand why he needed medications every day if he was "all better now."
This is no isolated predicament. Childhood asthma rates in Philadelphia are nearly double the national rate, affecting more than 20 percent of the city's children.
And yet 78 million Americans have less than a basic health literacy, aka a sixth-grade level.
In asthma, low parental health literacy leads to 4.6 times more hospitalizations, 1.4 times more ER visits, and 2.8 times more missed school days than healthier children.
Lower parental health literacy also leads to: more use of nonstandard instruments to give medications; less concern about the effects of smoking during pregnancy; mothers less likely to breast-feed for more than two months; and parents less likely to use a medical home for their newborn infant.
Cutting-edge technology can now diagnose microscopic tumors before they spread, and revolutionary medicines can target these lesions. New, fifth-generation antibiotics help treat resistant infections that used to be untreatable.
Science is extending the lives of many, but still too many continue to suffer, get worse, and even die prematurely. Many times patients and families just don't understand the disease, the treatments, or even the proper ways to give medicines and control toxic diets or environments.
Several studies have shown that verbal communication of medication instructions is not good because those sheets are at a 10th-grade level and are rarely translated.
In another study, 81 percent of physicians used medical jargon that families could not understand. It's no wonder that in pediatrics, studies have shown that more than half of parents measure drugs incorrectly and more than half do not adhere to their child's regimen.
So what can we do to help?
For doctors: Use the evidence-based, "teach back method." Simply ask patients to repeat in their own words what they need to do. This method allows you to check a patient's understanding.
Also, consider care coordinators, both professional and laypersons, from the communities being served. Do not assume that families understand instructions just because they ask no questions, dress a certain way, or say they understand.
For families: Just as in your grandma's visits, bring in your child's medications. Prepare for the visit with written questions.
Use "Ask Me 3" questions from the National Patient Safety Foundation:
Ask your child's doctor: What is my child's main problem? What do I need to do? Why is it important for me to do this?
Parents should never be satisfied until all their concerns are addressed and they understand what they need to do. Literacy can be life-saving.
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