“Any questions?” is a phrase that is often situated at the end of a clinic visit. The phrase was also made famous during the war on drugs, when a public service announcement used an egg in a frying pan to demonstrate the effects of drugs on a user’s brain. These two words can accomplish a lot. It gives a patient the opportunity to bring up items you have not already covered. If there are no follow-up questions, the conversation must have been so on point that the patient completely understood the whole thing, right?
As is routine for me, I asked this two-word question at the end of a recent visit with a patient who had newly diagnosed acute leukemia. The patient was six days into treatment, so he had been asked this question a minimum of seven times since he received his diagnosis.
His response surprised me. “How am I supposed to have questions? This is all new to me, and I have no idea what is really, truly going on. People come into my room and tell me things, but it is all so foreign to me,” he said.
After the shock wore off, I realized that what he was saying made total sense. Someone who was otherwise perfectly heathy a week ago is now in the hospital for a month getting treatment. That alone can be unsettling. On top of it, we bop into his room and blurt out all these things going on with him using terms completely new to him. I imagine he felt the same way I do when I meet with my tax accountant (I have the financial sense of a lima bean). “Well, you need to deduct from line 35 on the 1039 form. But only if your MFISL is less than $3,000 wha wha wha wha wha,” my accountant says, as I try to listen to what has become indistinguishable from Charlie Brown’s teacher’s voice.
My patient’s response gave me an opportunity to rethink what I can do to minimize ill communication with a patient about their illness. The first, and most difficult for me personally, thing is to s-l-o-w d-o-w-n. Seeing a narrow spectrum of disease helps one gain a deeper knowledge of the subject, but it also leads to repetition of conversation. This may be the millionth time I’ve explained primary myelofibrosis, but it is likely the patient’s first time hearing about it. Speeding along like the Micro Machines guy can lead to misunderstanding. Did you just say, “Thirty thieves and a thunder Jeep” or “Dirty deeds done dirt cheap?”
I love to use analogies. One of my favorites is a comparison of books to genes to explain the difference between a metaphase karyotype and next-generation sequencing testing. In the analogy, each gene is a book, and the library is organized into shelves of books. A karyotype is looking in the window of the library to ensure the rows are in order, and targeted sequencing is pulling select books off the shelf to make sure the text is correct.
Albert Einstein is credited as saying “Everything should be made as simple as possible, but no simpler.” We are nimble with medical terms, and they have become part of our everyday lexicon. We toss long words and byzantine concepts around in conferences bedazzling medical students and bewildering fellows. In conversation with patients, though, that ability can be counterproductive. We tell patients that there are ring sideroblasts in their bone marrow, and they might be wondering if that is an abnormality in red blood cell precursors or the thing we should have put on something we liked (according to Beyonce). The Einstein quote above also calls for focus. Long meandering explanations tend to lose the point.
My patient with acute leukemia and I took it a day at a time, having the luxury of a 30-day admission. I was able to reinforce the major concepts of treatment daily. As the genomic information rolled in, we were able to incorporate it into our daily routine. His treatment did not go as planned, as is often the case in the world of acute leukemia. However, the difficult conversations we had were not so difficult. I like to think it was because our ill communication turned into skill communication.
Aaron Gerds, MD
Author’s note: The term “ill” or “illin” has had different meanings hip-hop over time. Run-D.M.C. used it as a synonym for “wack” or “crazy.” The Beastie Boys used it with a more positive tone, as another way of saying “crazy cool.”