Originally published on prost8blog; republished with permission.
Bill Farwinkle (a fictional patient) and his wife Judy are seated in two chairs in the exam room as I enter, introduce myself, and take a seat in front of the evil, glowing screen that often dominates physician/patient interactions these days. I have read through the urologist’s excellent intake notes as well as those from the radiation oncologist Bill saw earlier in the week. It is clear that he has been told most, if not all, of the information about his options for treating a Gleason 4+3 cancer found in 6/12 cores, plus the suspicion of a solitary metastasis in his left ilium. So, I start by asking him to tell me about his goals for today’s visit. As soon as it is convenient in the visit, I move the conversation to what he enjoyed about his import business and what he is doing with his retirement, and from there, just let Bill and Judy ask the questions they are most concerned about. It takes an hour, more or less.
These intimate encounters are the raison d’être of my 4 decades of medical practice. Trying desperately to keep up with the molecular biology of how a loss of PTEN or the presence of a mutation in one of the many DNA damage repair genes, never mind any of the multigene panels that could be ordered, hovers over each encounter as I ponder my role in helping an individual navigate a frightening diagnosis or a change in his clinical picture. Before reading any further in this post, I hereby assign you (as is my duty, being a professor after all…) this reading assignment: “Don’t Tell Me When I’m Going to Die.” (It's a short article, so read it first and come back when you're finished.)
The promise of “precision medicine” is all the rage currently. For example, in this week’s NEJM there is an article on re-adding the clinical risk parameters to the 21-gene recurrence score now in standard use for certain breast cancer patients. In the accompanying editorial, Hunter and Longo (discussing the complexities imposed by combining clinical and genomic attributes) state, “Within these groups, both physicians and patients will have to face substantial uncertainty, and ‘educated guesses’ informed by multiple sources of evidence as well as by clinical acumen will continue to be necessary even in the age of precision medicine…”
Thus, when Mr. Farwinkle looks me in the eye at the end of our hour and says, “I suppose you know what I’m going to ask next…” I’m fully prepared to do my best, but in my heart I realize that medicine remains an art. Does he realize that his parents’ longevity, his smoking history, his cholesterol and blood pressure, and his willingness to exercise may play as much a role as the Gleason score or any genomic tests? “How long have I got, doc?” The question hangs there as I ponder how to answer.
We all share the same prognosis: Our time is fleeting, “threescore and ten, I remember well” as Shakespeare quotes in Macbeth. How to factor in the possibility that enzalutamide or abiraterone, a PARP inhibitor, or even an immuno-oncology agent that blocks the PD-1 pathway may affect this truth by a few months or even a year or two is on the one hand hopeful, and on the other, probably irrelevant. If only I could be as eloquent as Paul Kalanithi, the author of When Breath Becomes Air. In his original submission to the New York Times, when he was discussing coming to grips with his own cancer diagnosis, he stated, “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.”
And so I answer the Farwinkles. “I think you are going to be fine. Regardless of your decision as to what therapy we choose, you are likely to have a good outcome initially for several years, and I will be here for you. We can get through this together and we will take great care of you. But just as I have to remind myself, every day is a gift and we should live it like there won’t be unlimited tomorrows.”
Nothing has really changed for him. Or for me. I look forward to getting to know this family better…
Jul, 04 2019 11:27 AM
You say nothing has really changed for him. That's why you elide a full and frank discussion of his situation. “I think you are going to be fine. Regardless of your decision as to what therapy we choose, you are likely to have a good outcome initially for several years, and I will be here for you. We can get through this together and we will take great care of you. But just as I have to remind myself, every day is a gift and we should live it like there won’t be unlimited tomorrows.”
What he will hear is the first sentence you said, and all the words that followed it will be lost. He will hear the words "good outcome" as a confirmation of that first sentence, not fully appreciating the significance of the qualifying "initially for several years." Your final sentence is so general as to be pointless. It's true of everyone, as you point out, so the patient thinks of himself as someone who is going to be 'cured' by whatever treatment he chooses to have and will die at a ripe old age, at the end of his alotted years...just like everyone else.
But he is not just like everyone else, now. Things HAVE changed for him, despite your avowal that they have not. Cognitively, emotionally, psychologically, things have changed radically, even if his biological condition today is pretty much the same as it was a month ago. Today he has cancer, and he knows he has cancer. What your words have done is help him not face the full truth of his situation so that he can plan his future accordingly. He is not like everyone for whom each day is a gift; the number of his alotted days is likely to be much, much less than the "everyone else" that your final sentence so cavalierly compares him to. That comparison and the first words you uttered in response serve as bookends of denial. And in between, couched in and carefully elided by all the other words, are the four that say the most about what he really wanted to know: initially for several years.
What you could have said? "We have no way of knowing for sure how long you will live, but given the treatments we have to offer you, I think we can help you live a very good and satisfying life for several years into the future. Men with your stage of prostate cancer typically live anywhere from X to Y years after diagnosis. There are a lot of variables, and it's hard to know where you are likely to fall within that range. But given your medical status and the treatments we have for you, I feel good about the prospects of your being on the far end of it. I'm going to be here for you, we will take great care of you, and together we are going to get through this."
L. Michael Glode, MD, FACP, FASCO
Jul, 04 2019 12:06 PM
I think your commentary is excellent in many ways. Mostly, it confirms the issue of medicine being an art. In an essay of this sort, it is impossible to fully capture an accurate picture of what goes on in a physician/patient encounter. Much of the information you allude to in your last paragraph would have been discussed in my consultation answering the questions with all of their "salty water" details. Regardless of how hard one tries to convey accurate and honest information with empathy and dedication, there is always the possibility that for a given patient it could have been done better.
Jul, 05 2019 2:36 PM
Take a look at the Prognosis Declaration that Dr. B. J.Miller recently discussed in the NY Times ! We blogged about it here.
L. Michael Glode, MD, FACP, FASCO
Jul, 07 2019 6:23 PM
Thanks for the heads up. I also hypertexted the same link and "assigned it" as reading in my blog.