Going beyond the question list

Dave’s wife* pulled out a list of questions from her purse. Sitting across from her, I could read her first question upside down, in a shaky cursive script across the top of the page. Her question: “How much longer?” She knew that her husband’s situation sucked. Typically, however, she was more polite. Dave was in the hospital with a bowel obstruction due to carcinomatosis; we were sitting down for a serious conversation, and the real topic was dying.

I didn’t let on that I knew her first question. But when I asked her to read me the whole list, she didn’t include “how much longer?” I got Dave to talk about what was important now (time with grandkids was at the top of his list). We talked through her other questions, about carcinomatosis (bad), more chemo (no), IV nutrition (not helpful). She was trying not to cry.

We had covered a lot, I thought, and from the way she was staring down at her notebook, I judged that she probably had heard as much as she could manage. She seemed determined to get through this without crying, and I didn’t want to push her over the edge—she’d be so embarrassed, it would interfere with our next conversation.

But then she put her notebook aside, looked right at me, and said “Okay, how much time do we have?” Her husband nodded. I said that the time frame was weeks, with a worst-case scenario being two to three weeks, and a best case scenario being 10 to 12 weeks. She looked down again at her notebook, her hands shaking. “Ten weeks from now is winter,” she said, shaking her head. “That’s a terrible time to die.”

This kind of moment happens in cancer care all the time. The communication researchers call it an “emotion cue.” But what’s misleading about that label is that the cue is often masked with a statement (e.g., winter is a terrible time to die). And often we clinicians feel cued to correct the facts, to say something like, “There’s no good time to die.” When you hear an emotion and feel compelled to respond with a fact, hit your pause button.

I waited until she had finished shaking her head. She slumped over in her chair. Then I said: “That wasn’t what you were hoping to hear, I know. This is a very tough situation.” Her face crumpled. “No,” she said. She was holding her breath so she didn’t cry.

When I saw her shoulders relax a little, I said, “What you just heard is a very hard thing to hear.” She sighed, and said. “Well, yes, but that’s how it is.” In another few moments, I knew, she would be ready to make some real plans. Dave’s daughter described it later: “She needed to process, but Dad was dry-eyed. He was expecting this.”

[Originally posted as a guest commentary for ASCO connection. *A few details altered for confidentiality. I'll be sharing more skills at the ASCO Palliative Care Symposium later this month.]