Health literacy can save your life
By Jan Jarvis
If anyone can navigate through the complex health care system, it is Dr. Dan McCoy.
A physician and President of Blue Cross Blue Shield of Texas, Dr. McCoy knows his way around a hospital. But when his 93–year-old father fell and broke his hip, Dr. McCoy was ensnared by a system that failed his family.
When an elderly person fractures a hip, the risk of life-threatening complications grows with every second.
The clock started ticking that July 4 when an injured William McCoy arrived at a rural hospital with no surgeon on call. Three emergency department physicians, three orthopedic specialists, seven internists and 15 nurses later, he was dead.
It did not have to end that way.
“To them, he was just another old man who broke his hip,” Dr. McCoy said. “But my father was an active rancher who debated politics every day and was extraordinarily engaged. There is no reason why he could not have continued to have an active life.”
If communication slips could affect Dr. McCoy’s family, just imagine what someone with a low health literacy faces.
Health literacy might sound like a lot of medical mumbo jumbo, but it has real-life implications. More than $230 billion a year in health care costs are linked to low health literacy.
Health literacy is defined as the ability to obtain, process and understand basic health information and services. In simple language, it means being able to read prescription instructions or understand surgical consent forms.
But it’s much more. More than a third of American adults have inadequate health literacy. While most health information is written at the 10th-grade level, the average person in the U.S. reads at the 8th-grade level, and 40 percent of seniors read below the 5th-grade level.
“When an elderly person cannot read the instructions on a prescription bottle, they stop taking the drug, or they take it incorrectly, ’’said Teresa Wagner, DrPH, Assistant Professor of Public Health at UNTHSC. “Medical jargon, tiny print and complicated instructions can make it difficult to get proper health care.”
Some people are at higher risk, including the elderly, those with a lower socioeconomic status or those who have a low English proficiency.
But even educated adults thrust into a medical crisis are effected.
“Anyone can have low health literacy,” Dr. Wagner said. “When you are in shock and under stress, you only hear some of what is said, and often that is not what is pertinent.”
Everything slows down and stands still during a medical crisis, Dr. McCoy said.
“Time has a way of turning into fluff,” he said.
Betty Lewis, 74, waited patiently as paramedic David Dormady took her blood pressure.
“Have you been dizzy, had muscle cramps, blurred vision?” he asked. “Are you drinking enough? Are you taking your medications? What foods are you eating?”
In the world of health care, Lewis is what’s called a high utilizer. She often ends up in the hospital emergency department because of a heart condition.
Lewis does not fit the profile of a high utilizer, who is more likely to be a millennial than a retiree. But the different generations share an inability to negotiate the health care system.
The MedStar Mobile Healthcare Program was introduced to improve health literacy and reduce hospital readmissions.
“High utilizers are often readmitted to the hospital because they do not understand their disease process or the medications they’re been prescribed,” said Brandon Pate, Mobile Integrated Health Supervisor. “A lot of times, they have no idea how to utilize the health care system so they end up using the ER for their primary care.”
Through the program, paramedics visit patients in their homes and teach them skills such as managing their medications.
“We want them to call us or their doctor early, before their symptoms become a big problem,” Pate said. “If someone with heart failure has a two-pound weight gain overnight, we want to know about it.”
Participants receive a notebook with detailed information about their medical history and medications.
“It is written at a third-grade reading level with lots of pictures,” Pate said. “We encourage them to take it with them to their doctor.”
Handouts with pictures and simplified language improve health literacy, Dr. Wagner said.
“The program is a health literacy success,” she said. “Over five years, emergency department use decreased by 84 percent among those who finished the program. Between 2013 and 2018, the program saved $16.7 million.”
Lewis said that before the program she often went to the hospital.
“This has made a big difference,” she said. “It has helped me feel a whole lot better.”
Helping new Moms
Denise Hernandez knew something was terribly wrong.
After giving birth to a beautiful, baby girl, she felt sad and restless, yet no one in her family seemed to understand.
“Hispanic women just don’t get postpartum depression,” she said. “If you say you’re depressed, you’re seen as just complaining.”
She struggled with moodiness, anxiety and despair.
“I asked my husband if I seemed different, and he told me no,” she said. “But I don’t think he knew the symptoms to look for.”
Those symptoms pointed to postpartum depression, which one out of nine women suffers from.
Other life-threatening risks, such as high blood pressure and opioid addiction following a cesarean section also go unreported.
“Women die six weeks after they give birth because they don’t know they are at risk,” Dr. Wagner said.
While hospitals often send women home with information, it is typically too complicated for busy new moms to sort through.
“Health care should be as easy to understand as possible,” Dr. Wagner said.
To address the issue, Dr. Wagner led the development of an app called “What About Mom?” that provides information about infection, heart problems, blood loss and depression. UNTHSC’s SaferCare Texas and Texas Christian University Harris College of Nursing and Health Sciences contributed to the app, which was supported by an award from the Texas Center for Health Disparities, another UNTHSC entity.
While Hernandez did get treatment, she believes it should not be so difficult for women to get help.
“As a new mom, you just feel like you have to be happy,” she said. “If you’re not, you need someone who is able to recognize the symptoms for you and get help.”
Empowering young adults
Severe abdominal pain drove Megan Wagner, 22, to visit a doctor she had never seen before.
And then another, and another. Each time, her symptoms were dismissed as minor gastrointestinal issues.
“I felt like something had to really be wrong, but no one would listen,” she said. “I was going to work with severe pain and thinking, I can’t deal with this the rest of my life.”
As a young adult, she hesitated to speak up when her doctors insisted nothing was wrong.
“It is very common for people of this age group to be dismissed,” said Dr. Wagner, Megan’s mother. “They are not really seen as adults.”
They also are not prepared to advocate for themselves.
“They’re used to their parents advocating for them, and they don’t have the self-confidence to speak up,” she said.
In Megan’s case, the pain became so unbearable that she finally convinced a physician to order an MRI.
After the test, she was headed home when her phone rang.
“They said I had to come back for emergency surgery that day,” she said.
A few hours later, she was undergoing an appendectomy.
“She could have died from a burst appendicitis,” Dr. Wagner said. “Delaying surgery for more than a month put her health at risk.”
Learning from that experience, Megan is better equipped to deal with the health care system.
“I don’t know that I really feel empowered, but I definitely pay attention to pain and speak up,” she said.
Millions of Americans are health illiterate – they have trouble understanding basic health information.
What’s the risk?
$230 billion in health care costs – and many deaths – are linked to low health literacy.
What’s the solution?
Programs are underway locally and across the nation to improve health literacy and help patients negotiate the health care system.