At age 37, after a nearly 2-year battle with stage IV lung cancer, a talented neurosurgeon lost his battle. My oncology-related newsfeed is filled with stories this week about this brave and clever man’s recent passing. In a field where the recent tweets tout results of the latest clinical trials (overall survival prolonged from 2 months to 4 months!), it is sobering to be reminded of what truly matters to our patients.
Dr. Paul Kalanithi burst into our comfort zones with his op-ed, “How Long Have I Got Left?” in January 2014 and followed it with a poignant piece entitled “Before I Go.” This neurosurgeon-turned-patient opened the door to his firsthand struggle as a patient with a terminal illness. Drawing from his own experiences in treating brain cancer patients, he wrestles with his desires to “know” or “not know” his own prognosis. He researches the statistics and trials, all the while trying to resist the temptation. Many terminal patients reached out to him after this essay, thanking him for his words which deeply resonated with them.
In brain-cancer research, for example, while the numbers for average survival time haven’t changed much, there’s an increasingly long tail on the curve, indicating a few patients are living for years. The problem is that you can’t tell an individual patient where she is on the curve. It’s impossible, irresponsible even, to be more precise than you can be accurate … In a way, though, the certainty of death was easier than this uncertain life. Didn’t those in purgatory prefer to go to hell, and just be done with it?
How eloquently he poses this dilemma; one that so many patients I meet try to express. Which is worse: to “know” or “not know?” To have a countdown until the end or to slowly slip away? And what do patients really want to hear from their physicians? As Kalanithi infers, there is a fine line for physicians to follow as to providing real or false hope to patients and their families. The oncology literature is peppered with tales of overly optimistic oncologists and the harm caused by their approach. However, as cancer research marches on, it has become infinitely harder to declare an accurate prognosis for many stage IV cancers.
What patients seek is not scientific knowledge doctors hide, but existential authenticity each must find on her own. Getting too deep into statistics is like trying to quench a thirst with salty water. The angst of facing mortality has no remedy in probability … The path forward would seem obvious, if only I knew how many months or years I had left.
And therein lays the core issue. If today was your last, how would you live? What would you want your oncologist to share with you about dying? Our terminal patients are desperate to discuss this. And why can’t we oblige them? Instead of reviewing a Kaplan-Meier curve or quoting a progression-free survival, maybe we should ask and listen. Placing our own fears and insecurities aside, we can help patients find peace with life and death. After all, we have multiple resources at our fingertips if we request them: nurses, chaplains, social workers, case managers, therapists, support groups, and patient mentors. These are the interventions that, according to both clinical anecdotes and evidence-based sources, make a real difference.
We would be wise to follow Dr. Kalanithi’s mantra borrowed from playwright Samuel Beckett: “I can’t go on. I’ll go on.” When an end-of-life discussion becomes hard, we should continue. When a terminal patient needs five more minutes of our time, we should give it. And when we feel as if it is too hard to go on, we must. The world needs more physicians like Dr. Kalanithi, and how unfortunate that we just lost this one.
Ashley Sumrall is a neuro-oncologist.
