Simplifying the instructions for patients and their caregivers

Helping to care for her 94-year-old mother, Shelley Dietz noticed a problem, one with implications for much of the health care system. Dietz’s mother has heart failure, a condition that requires patients to drastically limit their salt intake and weigh themselves regularly. But when she stayed in a nursing home, Dietz’s mother got salty food, and when she was at home, the nurse’s aide didn’t make sure she got weighed.

“I thought, ‘Wow, there’s an educational component missing,'” said Dietz, director of care coordination at The Hospital of Central Connecticut and a nurse by training. “I just didn’t think there was any real awareness out there.”

Shelley Dietz

Now Dietz is part of an effort to standardize the information given to patients with heart failure and those who care for them, using short instructional films that will soon be available free on the Internet. The team behind them hopes the films will be used by hospitals, nursing homes, home care agencies and physician practices statewide, and possibly, across the country.

The films, called “Heart Talk: Living with Heart Failure,” reflect a growing acceptance of standardization in medicine, and are part of a larger move to make sure that patient care is coordinated across settings, inspired in part by a push from the federal government to keep patients who leave hospitals from coming back.

Two of the three films are aimed at the professionals who take care of heart failure patients–licensed staff like nurses, and unlicensed staff like nurse’s aides, who don’t always have training in how to care for or instruct patients with heart failure.

The other is aimed at patients and their caregivers, targeting glitches that often stem from the opposite problem–too many instructions. Most patients leaving the hospital are told how to take care of themselves. They often get more instructions if they go to a nursing home or have a home health aide visit. The guidance might be essentially the same, but with varied descriptions. One might say eat a low-sodium diet, while another refers to a diet low in salt, confusing patients who don’t know that both mean the same thing.

Even the condition itself can lead to confusion; it goes by multiple names, including congestive heart failure, pulmonary edema, and retention of fluid. Dr. Jason Ryan, a cardiologist at UConn’s John Dempsey Hospital and the films’ main on-screen presence, said he’s had patients who didn’t know they had heart failure because they’d heard other terms.

Whatever it’s called, heart failure often lands patients in the hospital, repeatedly. About one in four heart failure patients are readmitted to the hospital within 30 days of getting out. Beginning next fall, the federal government will penalize hospitals with higher-than-expected readmissions among Medicare patients, spurring hospitals across the country to focus on improving patients’ transition out of the hospital.

Ryan, the co-director of the UConn Heart Failure Center, said one thing that makes heart failure special–and suited for the project–is that patients can do many things to manage the condition, including avoiding salt and weighing themselves regularly to spot early signs of fluid retention.

“Many, many, many of the hospitalizations for heart failure we think are avoidable if patients have better education, and it often slips through the cracks,” he said. “We’re so busy ordering the tests and everything that everyone forgets to sit down at the bedside for 20 minutes and go over all the things that patient can do.”

Duplicated efforts

Two years ago, Ryan and his colleagues at the UConn Health Center began trying to better educate their heart failure patients. Their search for material to help brought a surprise.

“We were sort of shocked that there aren’t a universal set of teaching materials that everybody can use, and that there’s not an easily accessible set of videos that has some highlights about what heart failure is,” Ryan said.

Dr. Jason Ryan

The gaps Dietz and Ryan identified led to the film project, with help from Qualidigm, a consulting firm focused on improving health care quality. For the past two years, Qualidigm had been working with the Connecticut Hospital Association to help decrease preventable readmissions for patients with heart failure.

At meetings with hospitals and health care providers, people talked frequently about the importance of developing patient education materials.

“And everybody was working on their own,” said Anne Elwell, Qualidigm’s director of quality improvement consulting services. “That’s not very efficient.”

Qualidigm also held monthly meetings with representatives from hospitals across the state. At one, Dietz spoke about the importance of standardizing education. She said she got blank stares from the audience. But the idea caught on.

“We started to recognize that people are just getting information in many different ways, and a lot of the information is not at the appropriate literacy level,” or health literacy level, Elwell said. “You can be extremely intelligent, but that doesn’t mean that you understand your health care or the treatment that has been outlined for you.”

Qualidigm contracts with the federal government, and arranged to use federal funds to develop and make the films. The team working on them also developed paper handouts intended to give patients easily understood ways to monitor their health. The goal is for hospitals and other health care providers across the state to use them.

But how to make sure patients understand what’s in them?

Word choice

The team worked with experts in health literacy, which focuses on how well patients understand what they’re told. They also got feedback from patients, who were shown educational materials and asked what they thought was easiest to understand. Regardless of their education levels, Ryan said, nearly all the patients most preferred the material written at a third grade reading level.

“Studies have shown a lot of patients don’t understand the words we use, and that we need to use more straightforward language,” he said.

So in the film for patients, a graphic that mentions diet also includes the word “eating” in parentheses. Ryan gives explicit instructions, telling patients not to be afraid to ask their doctor questions and to weigh themselves regularly, record it on a chart, and bring the chart to their appointments.

Ryan said he’s always been aware of the importance of what words he uses with his patients, but has gained a deeper appreciation of how much of a difference word choice can make.

“The more I’ve done this, the more it has become so clear to me that we really can do a better job of communicating with people,” he said. “Sometimes we do these wonderful things in the hospital to make people feel better, and then we don’t communicate how important it is to take their pills every day, and they come back a week later. And I feel like that’s a shame that all that work fell apart.”

Beyond checking a box

The push to lower readmission rates has also intensified the importance of focusing on why patients don’t follow instructions or do what they need to manage their health–a shift Dietz illustrated with an example.

She said she could schedule a follow-up appointment for a patient leaving the hospital to make sure he’s managing well at home. But if the patient is elderly and relies on his daughter for transportation, Dietz has to also make sure that the patient has a ride to the appointment.

“Otherwise, I’m filling a requirement, I’m checking off a box, but I’m not giving you really what you need,” she said. “And that’s the change I think that we’re seeing”–not just checking a box, but providing what the patient needs so he can take care of himself.

To make sure patients understand instructions they get, Dietz and Ryan favor an approach called teach back, in which a patient given instructions is asked to teach them back to the person who gave them. Doing so has shown that patients often nod their heads as if they understand, but really don’t, and need to be made comfortable to ask questions, Ryan said.

He slips the technique into conversations with patients, especially those he knows well, by telling them, “‘I know when you get home your husband is going to ask you what I said today, and what are you going to tell him?'”

“If they can say, ‘Ok, I’m going to tell him that you said to double my dose and stop eating the extra salty hot dogs,’ then I say, ‘Ok, good, you got it.'”