Inspirational sayings are just that, they are meant to inspire. The words are designed as a roadmap, a side lines cheer, a push when strength is flagging. There are no inspirational sayings for accepting reality. No one is going to say out loud, “Hey, it’s okay, cancer is tough. It is okay to let it beat you.” Often attempts at pointing out the reality of the situation are interpreted that way. “You want us to give up?” We are asked. Healthcare workers worry about taking away hope as much as our patients and families do.
Yet without intending to, these sayings place a burden on patients. They communicate to them that failure is something they can control, that to beat cancer they must fight harder, not give up, never quit.
It is a challenge to have a conversation with the family and friends of our patients when they begin every conversation with a proclamation: She is a fighter. It is like throwing down a barricade. No one needs to talk about what ifs or having a plan B because Mom is a fighter. My brother is someone who never gives up. In other words, leave us alone.
When I am in a situation like I was with Jane, where I am presented with unrealistic expectations, I have to stop myself from telling people what to do. I have to hold my tongue sometimes. Which isn’t easy, especially since we know the trajectory of their disease. The best way for anyone to hear the truth isn’t by listening to what I have to say, but by hearing themselves say it. Our challenge is to nudge them toward that. But how?
Reflective questioning is a strong place to start.
“It sounds like Jane has been fighting for a long time,” I said, and then had to zip my lips and wait for her husband to respond.
After a moment he said, “She has been fighting this cancer for a long time, but she is a fighter.”
I allowed for the space between us to expand before I said, “She must be exhausted.”
Another long pause and he said, “Yes.” Then, rather than focusing on her being a fighter and the implicit connection to not giving up, I focused on how tiring her cancer and treatments were. How hard she was trying to get well. How much she wanted to keep fighting. How exhausting and disappointing it was. He nodded as I spoke. It was not an “ah-ha” moment for him. A light did not go on over his head. But he was able to embrace the realization that while she was still fighting she was running out of energy for the fight.
When I cannot get a family member to shift away from the narrative of fighting, in spite of my best efforts, then I may resort to a metaphor. There are 2 I like to use. One is the prize fighter. All of the best prize fighters eventually lost. These people were literally trained to fight. Yet, at the end of their careers, they were not able to mount that level of fight. The second metaphor is about the natural aging process. My mother is 91. She cannot do what she could do even 10 years ago. She has not given up. But her body is not able to function as it once did.
Both metaphors focus away from the person and onto what they are fighting. Being a “fighter” is about the character of the person, not the cancer.
Jane’s husband struggled throughout her hospitalization. Her illness had progressed so rapidly he could not keep up. Hearing a distinction being made between his view of his wife as a fighter and the overwhelming battle she was in eased his suffering. It allowed him to see that she could be a fighter all the way down to her core and still not succeed in beating her cancer. Our challenge with him was to help separate the fighter from the fight. And it is a challenge we face with many of our patients.
Ann Brady is a symptom management care coordinator at a cancer center in Pasadena, California.