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Clinical Culture Shock: Low Health Literacy as a Barrier to Effective Communication

On a Saturday morning at one of our local safety net clinics, where third-year medical students see patients independently and then present to the supervising attending, a man in his 60s arrived to talk about some lab results he had received and what they meant. This man, Mr. S, had many medical problems, including hypertension, COPD, chronic kidney disease and newly diagnosed diabetes. He came to the office that day wanting to know why he had several abnormal values on his most recent lab work.  Mr. S clearly wanted to take care of his own health as best he could, but like many patients he had very low health literacy. Confounding this situation was the advice of his neighbor, a chemist, who informed him he needed several more tests done, further confusing Mr. S.

“Why am I anemic? What does it mean that I have high parathyroid hormone? My neighbor told me that y’all need to do these tests here,” he told me, pointing to the hand-written words ‘transferrin’ and ‘thyroid panel’ on his lab results sheet. Since this was the first time I had encountered this patient, his lab results were a bit of a conundrum to me at first as well. When I looked at his whole picture and the other medical conditions he had while presenting to my attending, his lab results made more sense.  Mr. S had chronic kidney disease, which easily explains both of the abnormal results; his kidneys weren’t secreting enough erythropoietin to stimulate sufficient red cell growth, and they also weren’t reabsorbing enough calcium and activating enough vitamin D to satisfy the sensitive parathyroid glands.

Explaining this to a man with low health literacy was simultaneously simple and challenging.

“Your kidneys aren’t working as well as we would like, so we want you to see a nephrologist, a kidney specialist, who can help you manage that better,” my attending explained when we saw the patient together. Mr. S accepted that, but when I went back to give him his paperwork, he had a little more to say when I asked him if he was satisfied with the answers we had given him. He thought he understood our explanation well enough, but he wondered what could he have done to have prevented this. He felt neglected by the specialists he had seen in the past, both because of his uninsured status and because he hadn’t understood their explanation of his condition well. He was concerned that he would be written off again. This time, the only care I could provide was to listen and reassure.

Overall, I  sent Mr. S home feeling like our healthcare team hadn’t helped him all that much. He was a very pleasant, talkative gentleman who clearly wanted to have a voice in his own care. He seemed satisfied for now, but I wasn’t. I had listened to his concerns and tried to translate the medicalese I have been learning for the past two and a half years into something he could understand. But I didn’t feel like I had done a very good job. I realized then how important it is to find a way to help people of all educational levels understand enough to be an active player in their own healthcare, and how difficult it can be to find the right words for each patient. I hope that the more I talk with patients, the better I will become at doing this.

So many people, myself included, say that we want to go to medical school to help people. One of the hardest realizations to make is that we can’t always help people in the grand ways we once pictured. Sometimes all we can do is listen and make sure that the patient feels heard and respected. Sometimes we have a medical intervention that will improve that person’s life to some degree. Sometimes we have a medication that will make it worse for a while in hopes of making it better in the long term. Sometimes we see well people and try to help them stay well. The important thing is that we never lose the desire to help and to keep trying to help in the face of encounters that feel futile or patients who can’t always help themselves.

Lindsey McDaniel Lindsey McDaniel (3 Posts)

Medical Student Editor

University of Kansas School of Medicine - Wichita

I am a Class of 2016 medical student with an interest in a career in pediatrics. I was almost an English major in college, and I still love to write but don't get nearly enough time or opportunities to do so. In my future career, I hope to be involved in narrative medicine and pediatric advocacy but also want to have time for my family and friends. I also have a cat named Harry, and if you ever meet me in person, be prepared to look many pictures of him!