The textbook answer would have been straightforward: No additional chemotherapy. Focus on palliative care.
But Max (not his real name) was not a textbook case. He was a person, and he was terrified of dying.
When I met him in clinic, four lines of chemotherapy had not slowed the spread of his rare cancer that was already metastatic at the time of diagnosis. His skin was yellow. His hair had fallen out in clumps. His legs were swollen to the point that he couldn’t walk. He had trouble transferring from his wheelchair on his own.
All this was offset by the college hoodie he wore, a disarming display of his youth. I had to look at the chart to remind myself. He was only 19 years old.
“Will Dr. D give Max chemotherapy?” his mother asked me, referring to the attending oncologist who had been caring for her son since the beginning. “I think he needs it right away,” she said. She was holding back tears.
Protected by the fact that I was a visiting fellow in her clinic for the day, and I was just meeting Max, I deferred the decision to Dr. D.
Dr. D and I reviewed Max’s case outside the room, scrolling through his PET scans showing spread of cancer in his liver, lungs, and bones in only 2 short months. We recounted the multiple lines of chemotherapy and immunotherapy he had tried and that had failed him.
Palliative care? I offered. She agreed.
But as we went back in together, it was harder. Max’s mother began to cry as Dr. D tried to broach the option. To her, palliative care meant death. That was not something she could swallow. Her questions turned back only to the next chemotherapy we would be giving.
I learned that Max’s father worked in a hospital. He knew how serious it was. “He calls me every day, crying,” my attending later told me solemnly. Begging her to do something. Pleading for more chemotherapy.
After some painful back and forth in the room, we didn’t come to a resolution. Dr. D would call them later, she said.
It was a busy clinic day, and we saw the rest of her patients.
“What are we going to do about Max?” I asked at the end of the day. I was writing the note in his chart. We still didn’t have a plan.
More chemotherapy, from any technical and data-based standpoint, was not the right choice. We had no evidence it would improve survival. We did have evidence that it could worsen the quality of life when time was limited. If we gave him more chemotherapy, it would be beyond guidelines, beyond evidence. We would be off the grid.
I thought about the conversations I’d been privy to about giving toxic therapies near the end of life. While a handful felt productive, others were uncomfortably strained. The latter involved a tension that manifests when the goals of the patient and the oncologist are misaligned. The words may be slightly different each time, but the theme is the same.
The oncologist says: “More chemotherapy is not going to work.”
The patient says: “But we don’t know. It’s better than doing nothing. Can’t we try?”
This can be excruciatingly challenging because both sides are correct. Both sides are logical, and yet they are talking past each other.
From the point of view of the person desperate to survive, anything is worth a try. Without trying some form of treatment, there’s a zero percent chance of surviving. Low odds of something working are still better than zero percent odds.
But it’s not an issue of logic. For people like Max’s parents, the questions come from a place of helplessness. The cognitive dissonance sets in because our job is to help and we struggle when we feel we cannot. We want to say yes. I wish we had a treatment to slow Max’s cancer, too. I wish more chemotherapy would help him.
What I’ve learned from these conversations is the importance of defining terms. Specifically, what do we mean when we say a treatment will or will not “work”? What are we trying to achieve? To prolong life by weeks? By months or years? To make your pain go away? To help you feel stronger? To allow you to spend time doing what you love?
The relevant question is not: Will this treatment work? It is: What are your goals, and will this treatment help you achieve them?
Defining terms in that way can mean the difference of a conversation where two sides are talking past one another to one that comes to a mutual understanding – even if the ultimate conclusion is painful for everyone.
Yet sometimes, even for the most skilled communicators, there may be compromise. There may be an agreement to trial Nth-line chemotherapy, even without evidence that it will achieve a person’s goals. It will require nuanced informed consent from both sides. And it will come from a place of compassion.
Dr. Ilana Yurkiewicz
This is what I thought about as I signed chemotherapy orders for Max that evening. I felt for him, for his parents, and for his oncologist.
Because even though I suspected the treatment wouldn’t work the way they all hoped it would, I also wasn’t the one fielding daily phone calls from a father, begging his oncologist to do something, anything at all, to save his son’s life.
Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz.