Monday, November 10, 2008

The Orwellian Language of Pediatric Oncology


George Orwell is most famous for his novel, 1984, which described a future world run by Big Brother, who controls all aspects of society. One of Big Brother’s methods of control is the manipulation of language, referred to by Orwell as Newspeak – the use of words to mean essentially their opposite.

I was struck this past weekend by how we doctors use words in ways not originally intended. An oncologist might say the following about her patient, “Frank failed cisplatin/doxorubicin, so we are going to use ifosfamide and etoposide.” What the doctor meant was that Frank was treated with cisplatin and doxorubicin, but these drugs did not control his disease. The drugs failed Frank, even though the doctor said that Frank failed the drugs.

In my most recent blog post, I discussed how it can be good to be wrong. But is that what I really meant? Of course not. It’s never good for me to be wrong. What is good is that I told the family there were two possible explanations for their child’s CT scan results, one more likely and one unlikely – and the unlikely (but better for the patient) result turned out to be correct.

On Sunday, the mother of my patient updated her CarePage. Her son, she said, is “getting bored with cancer.” Reading this reminded me of something I often tell patients when they are in the hospital and not much appears to be going on: “It’s better to be bored. Bored is good.” That sounds like something from 1984. Or from the Oliver Stone movie Wall Street (“Greed is good.”). But in this case, it’s true. Being bored with your cancer can only be a good thing. It means things are going well, there are no acute crises, and (to quote my patient’s parent’s blog again) “adrenaline [isn’t] flowing like a volcano.”

Sometimes Newspeak DOES reflect the truth.

12 comments:

Gwyn said...

You medical types often speak of "writing a grant" when you mean "writing a proposal". The grant is what (you hope) the other party will write!

I can see how imprecise language has a place as, say, shorthand in clinical notes - but elsewhere, it drives us OCD types up the wall.

Doctor David said...

You're so right, Gwyn! I make that error all the time.

jaime said...

I totally agree with you - it reminds me of something you emailed me once, about a patient being "chemotherapy-deficient". I myself hate the battle imagery associated wtih cancer. But I think the wording we use in general with medicine and cancer is so interesting.

Elsa D. said...

Great post. I Just want to tell you that I love your blog.
I agree with you, bored is good. When I am recovering from my sarcoma surgeries I feel happy when I start getting bored. It means that they will be sending me home soon.

Mary Alice said...

And how about when we call lymph nodes "positive" when it isn't a good thing at all and "negative nodes" are great! I work in breast cancer and when hormone receptors are positive (ER/PR) that is one of the only times "positive" is really a good thing...easier to treat at least.

Cathy said...

Another word you doctor's use all the time that I never really understood is "Appreciate". As in "There was a large Hernia appreciated on EGD." In reality, you nor patient, appreciates any such thing.

Marilyn Mann said...

I agree, there is a lingo that oncologists use, and when you become a cancer patient you either need to learn that lingo or you will have trouble understanding what the doctor is telling you. Besides words like "positive" and "negative" that mean the opposite of their everyday meaning, ther are phrases like "there is no cure" (meaning you are likely to die of your cancer). When I first heard that phrase, I did not understand what the oncologist was trying to say. Fortunately, the conversation was hypothetical, as I have not had a recurrence (so far).

I have a friend with metastatic colon cancer whose cancer is currently responding to chemo. Last time I visited her, it was clear that there was some failure of communication between her and the oncologist. She is on Aranesp for anemia. I told her about the recent warnings regarding this class of drugs, and that they were not to be prescribed to people who are getting chemo for curative purposes. She said she would have to talk to her doctor, because she believes the doctor is giving her chemo to "cure" her cancer. I don't see how this could be the case, but I was hesitant to disagree with her. In any case, I think the oncologist should have told her about the warnings about Aranesp. I believe it was the head of the FDA advisory committee who said it was "miracle grow for cancer."

Doctor David said...

Those are all excellent other examples of the strange and interesting ways we oncologists (and doctors in general) use language. Thanks for sharing!

Anonymous said...

strange that your patient hasn't jumped on the CaringBridge bandwagon. ;)

Lea White said...

I so fully agree with you! We like the boring bits too. Certainly last year Bianca's had so many things happening that when we finally settled into a "boring" routine it was actually a big relief. Of course just to keep us on our toes, we deal with our steroid side-effects each month, with yesterday being particularly stressful :-).

Lea White (mum of Bianca)
http://whitesinnz.blogspot.com

outre said...

I see people having problems understanding what positive/negative in oncology and other areas of healthcare in general. When i have to write educational material geared toward patients, it's actually harder than writing for HCPs. Clients will ask multiple times to simplify things I thought was simple enough.

I once read a post by a mother w/ a daugther with MPNST and she had just gotten the path report and due to the word confusion I guess her reaction was opposite of what it should be.

I didn't have the heart to tell her right then and mostly was waiting for her to digest everything and clear up her misunderstanding. She eventually did figure it all out. Plus, much to my distress, lots of people don't take my advice on NF related MPNST b/c I don't actually have it. They feel b/c I only had a scare, I can't possibly know... so I've become hesitant to reach out at all.

Boring is good, even though it makes me really antsy.

Leslie said...

Great post! My favorite Orwellian Doctor phrase is "grossly normal". And just what is so gross about being normal. :)