I attended an educational program in our community a few weeks ago. An interdisciplinary group of providers including pulmonologists, respiratory therapists, oncologists, thoracic surgeons, and radiation oncologists discussed a whole host of issues surrounding lung cancer. The final talk of the program concerned treatment options.
Treatment was broken down into that specific for different types of lung cancer, as well as the various stages of the disease. It was a very thorough presentation and especially in light of the new immunotherapy/check-point inhibitors coming onto the market seemingly every day, it’s a very complicated topic to discuss with a lay audience.
What really caught my attention was just how often the word treatment or the phrase “this is how we treat this” was repeated, no matter the stage of the disease. But when it came to the discussion around treatment for advanced stages of lung cancer, an important piece of information was notably absent.
Treatment
as defined by the oxford dictionary: medical care given to a patient with a disease or injury
Nowhere in this definition is the word cure. So from its pure definition, it’s correct for providers to talk about treatment for diseases that may or may not be curable.
However, for many patients/families with a diagnosis of a life-limiting illness, the word treatment brings with it our friend: HOPE. So unbeknownst to providers, the definition of treatment morphs into: medical care given to cure a patient with a disease or injury. Which is not the same thing at all.
So a word of caution: be very careful with this word.
and here’s why
During their presentations, never did any of the providers explicitly say that advanced stages of lung cancer were incurable. And that’s an important point to go missing.
The surgeon mentioned that an operation was not a treatment for these patients, but he didn’t say why. Both the medical oncologist and the radiation oncologist talked about treatment for stage iv disease in the same matter of fact manner as the more localized, potentially curable stages. Because they repeatedly kept saying “this is how we treat the disease” without the key qualifier, misinterpretation by patients/families is easy to understand. And because they continue to hold onto hope for a cure, this causes the suppression or outright denial of the reality that needs to be faced.
I see this in action again and again with many of my patients.
patient examples
Mrs R, 75 yrs old with end stage heart failure who had an AICD (a defibrillator) placed a month ago, and is again hospitalized with an exacerbation of her heart failure symptoms. “They told me the AICD was treatment for my heart failure, and here I am again”. This patient did not understand that the purpose of the AICD is to prevent sudden cardiac death (important), but in and of itself does nothing to improve cardiac function.
Mr K, 62 yrs old with metastatic cancer who recently started a 4th line treatment option is emergently admitted to the ICU with sepsis. He is severely immunocompromised due to the drug regimen and now has multisystem organ failure. He is dying. His family is shocked by this outcome and during our discussion they keep repeating, “They told us this was the only treatment left, how could he have gotten so sick?”
Providers commonly talk about treating progressive, non-curable diseases often without fully explaining just what treatment means. Is it for cure? Is it to slow the disease progression? Is it a hail-mary pass in hopes that this new treatment will hold a potential dramatic response (common hope with some of the newest cancer agents)?
Plus, they often don’t realistically explain the likelihood of ‘success’ or the true burdens of the treatment. I don’t believe this is purposeful obfuscation. In fact, I feel that they believe they have been very clear. But based on the understanding that I illicit during my conversations, it is painfully obvious that it hasn’t been.
Is it any wonder that patients/families want to continue toxic treatment regimens even when nearing end of life? The fact that the disease is incurable is certainly frightening, but this reality needs to be explained. Some providers try to sugar coat it as a means of being compassionate, so their patient doesn’t lose hope. I would counter that HOPE is pretty good at inserting itself in patient/family thoughts. I’m more convinced that a lack of clarity with our words is a bigger problem, because it makes it difficult for patients/families to digest and incorporate their situation into their new reality- which is critical to truly informed decision-making.
And goes a long way towards explaining why palliative medicine providers keep getting consults along the lines of “patient/family just doesn’t understand….”
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