Last week, I had the pleasure of giving a talk on cancer at the University of Iowa Carver College of Medicine Mini-Medical School, a series of presentations provided to the lay public to introduce them to a topic in medicine. Every time I give a talk to a lay audience, I think back to a wonderful woman I had as a patient when I was doing my oncology training in the 1980s. She was a retired English teacher who took pleasure in gently ribbing me about the words I selected when I spoke with her (once a teacher, always a teacher). I recall one time when I suggested we consider putting her “on trial.” Her response – “Put me on trial? What a strange phrase. I certainly wish getting cancer was against the law! Why do you want to put me on trial?” That lead to an animated conversation about not only that phrase, but how doctors use expressions when talking to each other that are interpreted differently by patients. While I don’t recall which additional specific phrases we discussed back then, that conversation had a long lasting effect on me, and the phrases I use when I speak to patients, families and the public.
As with any specialized field, those of us who work in cancer have developed our own terminology so we can communicate effectively. Some of this lingo involves common words that we use among ourselves to convey certain concepts that are different from the usual use of those words. Cancer specialists use these words to mean one thing, but that meaning is different for the lay public. As with my patient, the result can be confusion and even distress. Here are a few of the phrases I have learned over the years that can create such problems. Some of them I avoid altogether. Others I still use, but also explain what I mean very carefully.
“Put on trial” – As my patient pointed out to me, the word “trial” can lead to a confusing and disturbing image for some patients. Other phrases we use to describe clinical research, such as protocol, investigational therapy, research study, control arm, randomization can also be confusing. I sometimes still use these phrases, but make sure I explain them in detail using language the patient can understand.
“The patient failed therapy” – It is easy to see how this phrase could be interpreted to imply that it is the patient’s fault the therapy did not work. I don’t recall if this was one of the phrases I talked about with my patient, but if it was, I can just imagine what she would have said. “Now Dr. Weiner…the patient didn’t fail therapy. The therapy failed the patient! Let’s get the subject and object right. Instead of saying the patient failed therapy, say the therapy failed!” The patient failed therapy is a phrase I never use, but still hear all the time. Let’s get rid of it!
“In remission” – Cancer specialists use a variety of phrases describing how well a treatment is working: partial remission, complete remission, stable disease, response, durable response, mixed response, etc. Each have very specific meanings to us, but can be extremely confusing to patients and their families. When we use these phrases when talking to patients and non-oncology specialists, we are obliged to explain them in more detail.
Being careful with the phrases and words takes getting used to, but does not limit our ability to communicate. Over and over again, I have found it is possible to explain very complex and nuanced concepts to the lay public, including patients and their families, by taking extra care to think about the lay interpretation of every word and phrase I use, and to be sure to explain these terms in ways non-oncology professionals can understand.
Indeed, I was asked perceptive and thoughtful questions after my mini-medical school presentation last week – questions that addressed complex concepts without the technical language we use to discuss such concepts among ourselves. Speaking of school and teaching on the appropriate use of language, my patient from 30 years ago is no longer with us, but she had a lasting and positive effect on me and how I use technical words and phrases with patients, families and the lay public. That is what I would call a “durable response.
Those who wish to attend University of Iowa Carver College of Medicine Mini Medical School can find more information about the program here.