I had taken care of her for years. We had faced a new diagnosis, the toxicities of adjuvant treatment, the promises of having no evidence of disease (NED as my friend, Molly, refers to it), only to have it shattered with the first recurrence. Over the next three years, she had undergone treatment — chemotherapy, a trial of endocrine therapy, more chemotherapy, each punctuated by brief respites so she could “feel what it’s like not to be sick all of the time.” Recently, we opted to proceed with experimental therapies. I referred her to our phase I group and she had enrolled in a phase I trial.
After a few months on trial, she came back in to see. I did my best to hide my shock on seeing her again; she looked so different. Her face was thinner — her temples were devoid of muscle and fat (“temporal wasting,” we call it). She was recovering from mouth sores and had swelling in her legs despite her apparent and impressive weight loss.
However, this was no social visit. She had been sent back to see me because that promising treatment had ceased to keep to its promise. She had evidence of disease progression once more.
We exchanged hugs, talked about our families, and laughed a little — more like friends gathering over coffee than doctor with patient. At some point, she looked at me, and asked, “So, what do you think?”
As an oncologist, I am aware of the reputation we have in popular culture. To the public, oncologists are often viewed as pushers of toxic treatments, never knowing when to stop, always treating up until the patient breathes her last breath. Indeed, this view of the oncologist was recently displayed in a New York Times opinion piece — “When It’s the Doctor Who Can’t Let Go” — where despite the “obvious,” the oncologist’s reaction to the family’s wishes to discontinue cancer-directed treatment was described thusly: “Hearing this, his oncologist, standing beside me at the nurse’s station, cried, heartbroken that her patient of so many years would not rally one more time.”
I do think this public perception of over-prolonging treatment is backed up by data. In a recent review, almost 40% of patients received chemotherapy in the last month of life. It is likely much higher if one considered the proportion of patients treated in the last six months.
I am quite cognizant of these perceptions and am aware of the data. Despite this, I will frequently agonize in private over the right advice to give — even before I enter that patient’s room. I do not think I am alone in recognizing that this situation is perhaps one of the most difficult for a practicing clinician, especially when it involves someone you have known over a span of years. However, it is a disservice to oncologists to accept the view that we are personally invested in our patients continuation of treatment; that we “want” them to rally. In a way, I think that is too easy a conclusion.
When I sit with someone who might be nearing the end of life, I grapple with so much uncertainty that it makes me anxious. I am not divine and cannot predict with any degree of certainty how much time one might have left. I cannot guarantee that a treatment will or will not work, even for the patient treated with multiple lines of therapy. I have seen the exceptional responders and continue to care for some of them, mostly by thinking “outside of the box.”
More importantly, though, it is important to know that I (and I believe many of my colleagues) always rely on the past — I rely on what I know of my patient, her wishes, goals, and desires; what she deems important, what she is willing to live with, and what will make life not worth living. At the end of the day, not all patients want to stop treatment, some want (or maybe “need” if it’s not too strong a word) to continue treatment until their last breath. To me, there is no right or wrong in such a decision — we all should decide how we will spend our last months.
So what did I say to my patient — my friend — at this critical juncture in her own cancer journey? “Well, let’s think about that.”
Don S. Dizon is an oncologist who blogs at ASCO Connection, where this post originally appeared.