News Headlines read: Sen. Edward Kennedy loses battle with cancer. Really, he lost? I thought he died from a malignant brain tumor, an “aggressive” brain tumor. The median survival is less than a year for people for his particular tumor. Kennedy was diagnosed in May of 2008. He lived over 15 months after diagnosis. What a loser. He must not have fought hard enough. Huh? I thought he spent most of his life battling for social and health care reform in America. (See Chrissy Kistler’s tribute to Senator Kennedy.)
How many times have we all heard that someone is “a fighter”, “a survivor”? The rest of us must be wusses. How often do we hear of use terminology that is (inadvertently) offensive to an individual or others? If we see advance illness as a ‘battle’, then there IS necessarily a loser. The implication is that we have full control over our disease process and even our survival if we just have the right attitude. This is a dangerous concept and one we shouldn’t perpetuate. There is so much out in the world telling us what we are supposed to do so we don’t get sick, let alone die. And when we do get sick, we are subtlely shunned as having self-created our own suffering. (“Well, she had a type A personality, you know.” “She never ate properly. I told her to eat only organic macrobiotic foods.” Or, one of my personal favorites, “I guess he just gave up.”)
And while I am ranting, I object to using the word “terminal” to describe a person with an end stage illness. We all do it. “My doctor told me I am terminal.” Medicare requires a ‘terminal” diagnosis for admittance into hospice. Isn’t a person diagnosed with Alzheimer’s dementia or Parkinson’s disease ‘terminal”? Is it just me or does ‘terminal’ sound cold, cut-off from options, unfeeling, much like “The Terminator”? We are talking about people here, aren’t we? How about using the term “end stage” when it is medically appropriate? Other ideas?
Here are my three least favorite phrases used in medical/palliative care: (What are yours?)
- He LOST the battle – reasons as above
- Use of the word ‘terminal’ – reasons as above
- Forgo aggressive care – When I am scrambling writing orders, calling family, consulting pharmacy, rapidly titrating meds for a patient with intractable symptoms/suffering , am I not providing aggressive care? How is it that “forgo aggressive care” has come to imply ‘do nothing’ ‘comfort’ ‘care’?