#ASCO19 Reminds Us: Words Matter

Coming up frequently was the use of “fail,” as in patients who “fail” therapy. The topic was the subject of dozens of tweets by doctors and patient advocates, whose opinions were amplified as ASCO attendees weighed in with comments and retweets. For example, take this social media missive from SWOG member Dr. Mark Lewis, chair of our adolescent and young adult committee and an oncologist at Intermountain Healthcare. He wrote:

Dear #ASCO19,

You know I love you all but PLEASE stop saying patients “failed” therapy.

I told @TheAtlantic 7 years ago that that phrase encodes reversal of blame and shames those under our care.

It’s 2019 and it has to stop here & now.

This single tweet got a lot of responses – 693 likes, 168 retweets and 27 comments.

Here are some of them:

I feel the same way about “fighting.” Death from diabolical disease is not dishonor in battle.

Yes, yes, and HELL YES! As a pt living with #metastaticbc 21 years, 23 tx’s have stopped working 4 me. My cancer is smart enough to become drug-resistant, but not yet smart enough to kill me. Cancer outsmarts the tx – the patient doesn’t fail a tx that can’t keep up w mutations.

I did poorly on the first 3 treatments for my autoimmune disease, the doctor I saw last week was the first one ever to say those treatments failed me…not the other way around…and it really made a difference for me.

Wrote about this in my dissertation. Lost a dear friend to brain cancer this last week. She did not “lose the battle” or any other of those shaming, trite phrases. She was a gift to humanity. Period.

It’s still being said?!?! “Our treatment failed / was inadequate for / was not up to snuff / didn’t work for / OUR PATIENT.” Not so hard. #ASCO19

Words, clearly, matter. Especially in oncology. Our encounters with patients already potentially trigger dread. What did the scan show? Did the treatment work? How long do I have? Will I enjoy my time? Faced with so much fear, we must choose what we say carefully.

I talked about this two years ago right here, in a Front Line post about former Sen. John McCain, after he returned to Congress a few days after surgery for glioblastoma. Everyone was talking about how this amazingly tough man was going to “beat” his cancer. In the end, he did not survive, dying last year in August. No one would argue that this former Navy captain and prisoner of war didn’t fight hard enough, but that is the implication of the phrase “he lost the battle with brain cancer.” Yet many of us continue to use that phrase, and we also tag patients with “failure.”

In April 2015, my SWOG colleague Dr. Lee Ellis wrote an opinion piece, co-authored with me and Fight Colorectal Cancer Founder Nancy Roach, calling for an end to terminology related to the cancer “war.” You can read the JAMA Oncology piece here. Mark Lewis also wrote about the war metaphor in cancer care last year, shortly after Sen. McCain passed away. You can read his opinion piece in The Oncologist here. I am sad that we are still talking about fixing this four years later.

As others have said, our treatments may fail the patient. The patient may die of their malignancy, despite very aggressive therapy. We must continue this conversation about words and their impact, until no patient feels like a failure or a quitter or a loser. People with cancer face their disease with fortitude every single day. The least we can do is reflect their bravery back to them.