“Right now, I am foggy in my head. I have tinnitus. I have radiating arm pains. I have trouble walking. That’s what’s getting me down. Will the drugs make any of this worse?”
She allowed that they could, but it depended on the drug. The discussion became difficult for me or my parents to follow, despite all three of us being doctors. There were too many options, too many risks and benefits to consider with every possible path, and the conversation never got to what he cared about, which was finding a path with the best chance of maintaining a life he’d find worthwhile. She was driving exactly the kind of conversation that I myself tended to have with patients but that I didn’t want to have anymore. She was offering data and asking my father to make a choice. Did he want the red pill or the blue pill? But the meaning behind the options wasn’t clear at all.
I turned to my mother and father, and said, “Can I ask her about what happens if the tumor progresses?” They nodded. So I did.
The oncologist spoke straightforwardly. His upper extremity weakness would gradually increase, she said. His lower extremity weakness would also advance but respiratory insufficiency—difficulty getting enough oxygen—from the weakness of his chest muscles would become the bigger problem.
Will that feel uncomfortable, my father asked?
No, she said. He’d just grow fatigued and sleepy. But the neck pain and shooting pains would likely increase. He could also develop trouble swallowing as the tumor grew to involve critical nerves.
I asked her what the range of time looked like for people to reach this final point, both with treatment and without.
The question made her squirm. “It’s hard to say,” she said.
I pushed her. “What’s the shortest time you’ve seen and the longest time you’ve seen for people who took no treatment?”
Three months was the shortest, she said, three years the longest.
And with treatment?
She got mumbly. Finally she said that the longest might not have been that much more than three years. But with treatment, the average should shift toward the longer end.
It was a hard and unexpected answer for us. “I didn’t realize,” my father said, his voice trailing off. I remembered what Paul Marcoux, Sara Monopoli’s oncologist, had told me about his patients. “I’m thinking, can I get a pretty good year or two out of this?… They’re thinking ten or twenty years.” We were thinking ten or twenty years, too.
My father decided to take some time to consider his options. She gave him a prescription for a steroid pill that might temporarily slow the tumor’s growth, while having relatively few side effects. That night, my parents and I went out for dinner.
“The way things are going I could be bedridden in a few months,” my father said. The radiation therapy had only made matters worse. Suppose chemotherapy did the same? We needed guidance. He was torn between living the best he could with what he had versus sacrificing the life he had left for a murky chance of time later.
One of the beauties of the old system was that it made these decisions simple. You took the most aggressive treatment available. It wasn’t a decision at all, really, but a default setting. This business of deliberating on your options—of figuring out your priorities and working with a doctor to match your treatment to them—was exhausting and complicated, particularly when you didn’t have an expert ready to help you parse the unknowns and ambiguities. The pressure remains all in one direction, toward doing more, because the only mistake clinicians seem to fear is doing too little. Most have no appreciation that equally terrible mistakes are possible in the other direction—that doing too much could be no less devastating to a person’s life.