At a meeting that cut across hospital departments and outside groups, Amie Gilchrist, an Outpatient Care Transitions Navigator trained as a social worker, shared a story that highlights a barrier often considered but difficult to identify in one-on-one care: literacy.
One of Gilchrist’s primary duties is making home visits following patient discharge. Last July, she dropped in on “a 77-year-old woman who is sweet, but very reserved,” and made a discovery that dramatically altered the success of this patient.
“I remember knocking on that door the first day, the first thing she said was ‘baby, you’re here on time!,’” she recalls. “So I knew when I arrived that being punctual was very important to her. I realized that was key.”
The woman, who lived with her husband on a fixed income, had a dual diagnosis of COPD and heart failure. Once Gilchrist was in her home and gained her trust, she learned several things that were pivotal in altering this woman’s home care. For one, she noticed that her prescription for Spiriva, an inhalant that makes it easier for people with lung disease keep their airways open, sat unfilled. She also found out that the patient didn’t have a scale, even though monitoring her weight would be critical in mitigating the effects of heart failure. But something even more important came up as Gilchrist was sitting with this woman, something that the patient didn’t communicate during her stay in the hospital.
“During that process, she opened up to me that she could not read, and that her husband could not read either,” the social worker recounts. “That was huge, because she hadn't shared that information inside the hospital.”
This, in essence, is the power of the home visit. Because Gilchrist got to talk to the woman in her own home outside the strictures of the hospital, she was able to gain her trust and assist with her care in ways that were simply not possible pre-discharge.
“I always thank patients for allowing me to come into their home. It opens up everything else—for her to be able to share that she and her husband couldn't read,” she says. “I always say with healthcare, you can't be in it unless you already care. So, when you walk into somebody's home, you have to remember that they don't have to let you come in. Patients have a right to decline a home visit.”
“It's a privilege for you to walk into their home. This is their sanctuary, where they live, eat, sleep. You don't ever want to take that for granted. You are entering somebody's life when you cross that threshold.”
By treating the patient with warmth and respect, Gilchrist was able to identify a critical issue that would alter how she assisted them going forward. Even though most adults can read at an eighth-grade reading level, 20 percent are at or below a fifth-grade level, while most healthcare materials are written at the tenth-grade level. Studies have shown a strong link between health literacy and the ability to manage chronic health conditions, particularly when issues of age and cultural diversity further impede communications efforts. Add to that the fact that most adults who struggle with literacy are reticent to reveal their difficulties and you have a real, often invisible challenge, for healthcare providers who are unknowingly setting up their patients to fail.
Once Gilchrist knew the real obstacles facing this woman, she knew more care and support were necessary. Her first move was to call the couple’s local pharmacy to ensure that the drug was affordable and could be filled in a timely manner. With collaboration from the CHF Nurse Navigator she also scheduled a follow-up visit to bring back a scale; advised them on a healthier diet that fit the woman’s needs using educational materials with pictures of food choices; and set up a FaceTime session with a COPD navigator to walk through how to use the Spiriva inhaler once it was in her hands.
“I kept following up with her every day for a week or so just to make sure they were comfortable with everything,” she recalls. “She has done well since, she has really thrived. And I still stay in contact with her. She has not been readmitted at all.”
Gilchrist also notes how commonplace these literacy struggles are and suggests bringing up the subject with some sensitivity, but make sure to nail it down.
“I always ask them what their highest level of education is,” she offers. “Once they share that with you—this patient’s was the fourth grade—you can say, ‘okay, when you go to your doctor's office, do you understand the information that you're getting?’ That's when they say they aren't able to read it. You're not just going to ask straight out. And you cannot assume just because they went to ninth grade that they can read either. Sometimes they can't read at all, or they can only read a little bit.
“You're not there to make them feel down, to belittle anyone, you're there to let them know you are there to help.”
Part of Gilchrist’s success comes from the fact that she’s trained as a social worker and is more attentive to the extra-health concerns that can drive decision-making.
“To me, a social worker thinks differently. They are trying to capture the whole story. I can't take half a story, it has to come full circle for me,” Gilchrist explains. “What's the income? When did they become disabled? Who is the support system? You can't assume it's the family—it could be the church, a pastor they are relying on. Or it could be a neighbor. You have to know where all of the keys are.”
She sees her job as taking as much stress off the patient as she can, making sure support systems and people are in place so that patients can recover strongly. That means everything from proper medication to making sure they are getting warm meal. And, she says, the key is to always have a healthy sense of appreciation for your role.
“You're given an opportunity to walk into someone's life, so you never want to take that for granted,” she concludes. “Be thankful, and let that patient know that as well. Be the person that follows through.”