DP can seem confusing, scary to patients
Medications were not explained well
Health care professionals working in the area of hospital discharge planning might find that the most effective way to understand how patients perceive their communication is to go through the process themselves.
While it's not practical to hold discharge drills for hospital staff, they could learn a little from the experience of an educated professional who has far higher than average medical literacy skills.
"I've done health literacy research for years," says Terry Davis, PhD, professor of medicine and pediatrics at the Louisiana State University Health Sciences Center at Shreveport, LA.
"Then, several years ago, I had an experience I would not have expected, since I'm a full professor and faculty member of a medical school; and I have adequate literacy skills," she says.
Davis was discharged from a major and well-reputed academic medical center after mitral valve surgery.
From the start of the discharge process, she was confused about her medications. Previously, she had been prescribed no medications, and now she was being sent home with a lengthy and perplexing list.
"When I found out what the medications were for, I was still confused about why they put me on those medicines," she says. "For instance, I was put on a high blood pressure medicine, but I don't have high blood pressure."
Also, she was discharged with a medicine to treat her stomach, but she didn't have stomach problems.
"Another medicine's instructions said to take it once a day, but it didn't say how long to take it," Davis says.
Davis had an important question about whether she was supposed to be taking warfarin, which she had been given without any instructions, making her wonder if it had been an accident. The charge nurse she called checked electronic records and could not find Davis' name in the computer, so she was unable to give her any specific information or advice.
"I had just had surgery and felt weak and vulnerable," Davis recalls. "I asked her to help me make this decision, and all she could say was, 'We usually give this at night.'"
Davis was given a water pill called furosemide, but no one gave her instructions about watching for swelling in her ankles.
When Davis called her internist to inquire about how she was supposed to take one of her medications and whether she was supposed to fill one prescription, her doctor told her that she had to call the hospital. When she called the hospital, the person she spoke to said to call her internist.
"I was a professor who had been in many grand rounds; I'd done research in plain language communication, and I was still overwhelmed," Davis says. "I think physicians often know how to diagnose the problem, and they know the best evidence for a treatment plan, but they don't know how to embed that in your life."
Instead of receiving help at a critical transition point in her medical care, Davis was left to interpret the discharge instructions and medication list on her own.
"When I got home, I had to figure out how to take the medicine," she says. "I didn't have a strategy; for instance, the Lipitor and Coumadin looked alike, and I couldn't remember which one I'd taken."
While she experienced post-discharge pain and weakness, she could not interpret how to take her pain medications correctly. The instructions said to take one or two tablets of Percocet every two to four hours. Then it also said to take Tylenol every six hours, as needed, for pain. Both drugs contain acetaminophen, which Davis found out from her own research several years later.
"I found out there were two things of concern about pain medication," she explains. "First, how did I space them out, or did I take them together? Second: Which Tylenol did I take, because there are many different kinds?"
She also learned that Percocet has 320 mg of acetaminophen, and the Food and Drug Administration (FDA) had ruled that people should not take more than six of those in 24 hours because of the potential for liver damage.
Before doing her own research, Davis did not know that by taking both Percocet and Tylenol she could potentially put herself in danger of an overdose of acetaminophen.
"I didn't realize I had to pay attention to the active ingredient in the prescription of an over-the-counter drug," she says. "Most people don't pay attention to an active ingredient."
Other medication issues made her adherence difficult: Davis found that the plastic pill container's cap kept breaking off, and she had trouble refilling prescriptions, because they were staggered to be available at different times.
"Providers are not aware of the burden to the patient," Davis says.
"No matter how well-educated or how seemingly experienced you are, if you have been discharged from the hospital, you will experience a certain amount of vulnerability," Davis says.
When Davis speaks about her experience as a patient to a room full of physicians, pharmacists, and others, she often sees stunned faces. Once a pharmacist told her that when pharmacists are involved in discharge planning, they go over every medication with patients to discuss how they are taken and how to avoid taking more than what is safe at any given time.
One of the more perplexing parts of her experience was the contrast between the pre-surgery patient care and education vs. the post-discharge care and education.
"Pre-surgery education was fantastic," Davis says. "Every doctor I saw and every test was so well-coordinated and done in one day."
It ran smoothly. The surgeon met with her for an hour and answered all of her questions, and explained in terms she could understand how the surgery would solve her medical issues.
By contrast, her discharge nurse quickly breezed through the patient teaching.
"She completely lost me," Davis says. "I looked down at the sheet she gave me, and it was single-spaced with tons of words; and I said, 'Can you write down what these are for?' and she was put-out by that request."