Patients continue to teach me new things about medicine and a woman named Bonnie has been one of my best teachers yet. I met Bonnie last month in an online community where she was sharing with other ovarian cancer patients her decision to transition to home hospice.
While explaining that this is of course an intensely personal decision, she wanted her community to understand this option, which we physicians are often uncomfortable suggesting. As Robert Pearl explained in his piece, The majority of patients are stronger than many doctors realize: “Doctors worry patients can’t face the truth. All too often, however, it’s the physician who struggles to admit there’s little more he or she can accomplish.”
Instead of days of progression-free survival, Bonnie wanted to talk about tango. Scientists who design clinical trials, and the FDA, are increasingly focusing on patient reported outcomes or PROs. The idea here is that therapies should improve not just clinical measures like tumor growth, but also measures that relate more directly to quality of life. Unfortunately, it’s still scientists who decide which PROs we should ask patients about in clinical trials. There has not yet been a study measuring how much a new therapy increases time on the dance floor.
When Bonnie invited me to visit her at her home, she got out of bed to show off her red tango shoes and teach me a bit of tango.
Her advice to me and everyone: “Dream like you’ll live forever, live like you’ll die today, and die with your tango shoes on.” You can listen to Bonnie talk about tango and cancer in this 3 minute video. I hope she also inspires you to learn even more about what’s most important to our patients.
–Roni Zeiger is co-founder and CEO, Smart Patients. He is also a collaborator in The Real Cancer Stories project.
ASIAMED 