The direction suddenly became clear. Chemotherapy had only a slim chance of improving her current situation and it came at substantial cost to the time she had now. An operation would never let her get to the wedding, either. So we made a plan to see if we could get her there. We’d have her come back afterward to decide on the next steps.
With a long needle, we tapped a liter of tea-colored fluid from her abdomen, which made her feel at least temporarily better. We gave her medication to control her nausea. And she was able to drink enough liquids to stay hydrated. At three o’clock Friday afternoon, we discharged her with instructions to drink nothing thicker than apple juice and return to see me after the wedding.
She didn’t make it. She came back to the hospital that same night. Just the car ride, with all its swaying and bumps, set her vomiting again. The crampy attacks returned. Things only got worse at home.
We agreed surgery was the best course now and scheduled her for it the next day. I would focus on restoring her ability to eat and putting drainage tubes in. Afterward, she could decide if she wanted more chemotherapy or to go on hospice. She was as clear as I’ve seen anyone be about her goals and what she wanted to do to achieve them.
Yet still she was in doubt. The following morning, she told me to cancel the operation.
“I’m afraid,” she said. She didn’t think she had the courage to go ahead with the procedure. She’d tossed all night thinking about it. She imagined the pain, the tubes, the indignities of the possible ileostomy, and then there were the incomprehensible horrors of the complications she could face. “I don’t want to take risky chances,” she said.
As we talked, it became clear that her difficulty wasn’t lack of courage to act in the face of risks. Her difficulty was in sorting out how to think about them. Her greatest fear was of suffering, she said. Although we were doing the operation in order to reduce her suffering, couldn’t the procedure make it worse rather than better?
Yes, I said. It could. Surgery offered her the possibility of being able to eat again and a very good likelihood of controlling her nausea, but it carried substantial risk of giving her only pain without improvement or adding yet new miseries. She had, I estimated for her, a 75 percent chance I’d make her future better, at least for a little while, and a 25 percent chance I’d make it worse.
So what then was the right thing for her to do? And why was the choice so agonizing? The choice, I realized, was far more complicated than a risk calculation. For how do you weigh relief from nausea, and the chances of being able to eat again, against the possibilities of pain, of infections, of having to live with stooling into a bag?
The brain gives us two ways to evaluate experiences like suffering—there is how we apprehend such experiences in the moment and how we look at them afterward—and the two ways are deeply contradictory. The Nobel Prize–winning researcher Daniel Kahneman illuminated what happens in a series of experiments he recounted in his seminal book Thinking, Fast and Slow. In one of them, he and University of Toronto physician Donald Redelmeier studied 287 patients undergoing colonoscopy and kidney stone procedures while awake. The researchers gave the patients a device that let them rate their pain every sixty seconds on a scale of one (no pain) to ten (intolerable pain), a system that provided a quantifiable measure of their moment-by-moment experience of suffering. At the end, the patients were also asked to rate the total amount of pain they experienced during the procedure. The procedures lasted anywhere from four minutes to more than an hour. And the patients typically reported extended periods of low to moderate pain punctuated by moments of significant pain. A third of the colonoscopy patients and a quarter of the kidney stone patients reported a pain score of ten at least once during the procedure.