NCP Guidelines: Domain 1 - Structure and Processes of Care
December 8, 2018
I'll Take “More Options for $300," Alex
March 14, 2019
When I first heard Alex Trebek’s announcement yesterday regarding his recent diagnosis of Stage IV pancreatic cancer, my initial reaction was sadness for Trebek and his family. As someone who was diagnosed a month ago with Stage III clear cell ovarian cancer -- an aggressive, metastatic cancer for which there is no cure -- I know all too well how painful it can be to receive a diagnosis like that.
In his announcement yesterday, Trebek made it clear he is going to “fight” his cancer and “plans to beat the low survival rate statistics for this disease.” The problem with the metaphor of “fighting” an incurable cancer is that when the person with cancer dies, they are labeled as having “lost their battle” with cancer. The reality is that the battle imagery doesn’t work….period. When an army loses a battle, where do we place the blame?
I knew the minute I heard the results of my CT scan in an emergency room a month ago that I had a cancer that could not be cured. Before I met with the gynecologic oncologist who would remove my tumor, I reached out to the palliative care team at the hospital where I would have surgery and I set up an appointment to discuss my goals of care. I knew I didn’t want to spend any time or energy having chemotherapy that would only postpone my death, not prevent it. I wanted aggressive palliative care alone -- treatment designed to relieve my symptoms and make my quality of life as good as it can be for the time I have left. Both as a Quaker and as a longtime proponent of palliative care, I don’t want to be a “cancer warrior” or a “fighter.”
I simply want to keep being a mother, wife, friend, and colleague until I’ve run out of life to live.
Sadly, even the best oncologists (and I have a great one), rarely present aggressive palliative care alone as an equally-valid option to chemotherapy. My oncologist was stunned and a little taken aback by my choice. After all, I’m only 53 and in relatively good health: why wouldn’t I want to undergo treatment so that I could have a few more months?
Ideally, oncologists would offer multiple treatment paths to those with incurable, advanced/metastatic cancer: 1) chemotherapy/radiation (treatment toward the goal of delaying death); 2) chemotherapy/radiation plus palliative care (treatment toward the goal of delaying death and improving quality of life); and 3) aggressive palliative care only (treatment toward the goal of improving quality of life).
I’ve chosen aggressive palliative care as my sole course of treatment after my “debulking” surgery. The only reason I knew about this path being an option, though, is because I’ve spent 30 years working to promote early access to palliative care.
Our healthcare system defaults to “treat/do everything” and nowhere is this more apparent than in oncology. And while chemotherapy and radiation can be incredibly helpful for many patients, for those of us who want or would benefit from palliative care it would be ideal to have palliative care presented upfront with chemotherapy as a valid path, one that warriors and pacifists alike can choose.