A new study suggests even “good communication” between doctors and patients may still result in confusion. Parents of children at Johns Hopkins’ intensive care unit for newborns would routinely say that their children were only “somewhat sick” or “pretty healthy”, even when their baby was diagnosed with something life-threatening. What was more notable was that parents said these things even after talking with a doctor in what both parties considered to be a good conversation.
Physicians have suggested some explanations. One is that younger kids with severe problems may not outwardly appear to be sick, so parents without much medical knowledge may assume things are better than they hear. Also, in defense of the parents studied, I’m not sure many people want to say “Oh, my newborn child might die” to a random researcher. There’s a definite outward psychological component here, in my mind. We encourage patients and families to be optimistic, so even if people are worried, they tend to avoid phrasing things in a matter of fact way if that would be incredibly negative. The culture argument also seems important. We’ve made a lot of progress in treating severely ill newborns, so premature babies that would once have been considered lost causes are now almost definitely going to get to go home with the parents after a few weeks of treatment and monitoring.
What struck me from the NBC article though, was the story of the author (who is a doctor) saying patients routinely tell her “After all of these years, no one’s ever explained that to me before.” She points out, that, it just simply isn’t likely that no one ever explained any of these things to ALL her patients. And realistically, she wonders how many of those patients who had epiphanies in her office will forget, and thank their next doctor for “finally explaining something”.
Although this problem is particularly prevalent and important in medicine, since doctors routinely interact with people without technical training and the communication can literally have life-changing impacts, I think it extends to a lot of science. When I’ve tutored, I’ve come across a few students who say I’ve explained something better than anyone before. While I also like to take it as a compliment, I’m confused on some occasions when I know my explanations aren’t that different from the instructor or textbook. Sometimes I think it might be patience. As a tutor, I can put more time into working with one person than a teacher in a class of 30 or a professor with a lecture to 50-100 students. Dr. Gaines might be more effective than other doctors at explaining things because she might put more time in talking with the patient.
I also wonder if there’s something in context cues and repetition. I’ve seen lots of students claim to only really “get” a concept after repeating it so often they understand how to apply it. I wouldn’t be surprised if explanations seem to make more sense to patients when surrounded by doctors and having gotten a test or procedure done. When you’re out of that environment where it made sense, and you don’t think it about it for a while, people are prone to forget. I know I’ve forgotten a lot of stuff about electromagnetism and rotational motion since that wasn’t as important in my final year of undergraduate coursework. It seems completely logical for a patient to slowly lose comprehension of an illness if it doesn’t bother them for long periods of time.
PS: A blogging nitpick. To my knowledge, Gaines’ post doesn’t link to the original study, so I can’t glean anything else from it or link it for you. Unfortunately, this is a common practice in newspaper and television news websites.