Even as he approached death, Sen. John McCain was a leader. His decision on Friday, one day before he died, to terminate disease-focused therapy and direct his care toward comfort resonates deeply with me.
Diagnosed last summer with glioblastoma, a generally fast-moving and incurable brain cancer, McCain had been undergoing treatment and living his life, even casting a deciding vote that helped quash the repeal of the Affordable Care Act. His decision represents true leadership for me and many others with cancer.
Two years ago, I too was diagnosed with glioblastoma. As a young husband and father, it took some time for me to come to terms with the diagnosis. But over the course of my journey, I’ve come to learn that in coping with this disease, and probably any other, the “big decisions” that garner attention come at the end of a series of smaller decisions that may be just as important and stressful.
My journey began during a meeting with my neurosurgeon just days after an MRI scan revealed a large brain tumor in the part of my brain controlling sensory and motor function. I was asked whether I wanted a “watch and wait” strategy, in which my doctors would biopsy the tumor to identify its type and grading (a measure of a tumor’s potential for growth), or whether they should operate immediately. I chose to proceed with surgery to expedite removal and to minimize the need for multiple invasive procedures — and also because my neurosurgeon had said, “the tumor is so large, we will want to remove it, no matter what type it is.”
During surgery, for which I was awake, I decided with my neurosurgeon not to have doctors aggressively remove the tumor, which would damage the surrounding healthy tissue and carried a risk of paralysis. Instead, I opted to leave some of the tumor in my brain, in the margins of the surgical cavity. That protected my motor function, leaving only slight weakness and loss of some sensation on the left side of my body. My spatial awareness, called “proprioception,” was also damaged. Because of this, I walk with a cane to maintain balance and often bump into objects on my left.
Later on, I decided to use a recently approved medical device called Optune, in combination with chemotherapy and radiation, to treat my disease. But following my kids’ negative reaction to the device, which looks like a bathing cap and must be worn at least 18 hours each day to be effective, I decided to stop using it, even though clinical trials showed it added a few extra months of survival.
Medical decisions tend to balance the quantity of life against quality of life. Some people with cancer and other potentially deadly diseases choose to do whatever it takes to live as long as possible, even if quality of life in the last few months is poor. Others, like me, choose quality of life over quantity. I expect my care team to not only respect my right — or my medical decision maker’s right — to do this, but also expect that they will present options to us in a way that makes clear how quantity and quality are affected by each branch on the decision tree.
Sen. McCain and his family and care team provided a very public display of the rights of each patient to prioritize what is most important in the pursuit of effective care that respects the autonomy, goals, and values of the patient.
Thank you, Sen. McCain, for this final lesson. Just as you taught us dignity, respect, and service through your actions while living, you now teach us lessons about shared medical decision-making, in your death.
Adam Hayden lives with his family in Indianapolis. He blogs about living with brain cancer on Glioblastology, frequently lectures at medical schools, is an advocate for and member of the patient advisory committee for the National Brain Tumor Society, and serves on the executive board for OurBrainBank, a patient-driven platform to help people with glioblastoma better manage their diseases.