In a university town in the middle of a large rural area, we enjoy the privilege of taking care of patients from a broad array of backgrounds. One room will have a nonagenarian farmer who didn’t finish sixth grade and has only left the county a handful of times, and the next a woman who escaped from behind the Iron Curtain as a child and is now the principal investigator of a lab conducting multiple groundbreaking research studies. The patient I’m thinking of was on the scholarly end of that range but did not have a medical background. He read from reputable sources and understood his care very well. We generally spent our on-treatment visits discussing the technical aspects of his radiation delivery since his side effects were never very bad.
He had esophageal cancer and was relatively young and healthy, so we occasionally discussed the surgery for which I was providing neoadjuvant preparation. I tried to help him understand what that would look like, but just like everyone confronting that difficult procedure, he was definitely uncomfortable at the thought of it and tended to change the subject as soon as possible. He asked if it was reasonable to make travel plans two months after his surgery, and I explained that probably was not the best idea, that he should wait and see how things were going.
When he came back around for his first follow-up visit after the surgery, I was excited to see him. I had always looked forward to our conversations. As I expected, he had lost a great deal of weight since I’d last seen him and was pale but smiling. I worked through my review and physical, and his tone in answering was a little subdued. Finally, I sat and looked at him, searching his expression for clues as to how he was really doing. What he said was, “Why didn’t you tell me what that would be like?”
I nodded my understanding about what he was asking and said, “If you knew exactly what it would be like, would you have gone through with it?”
“I don’t know,” he said. “That was bad. Really, really bad.”
I nodded again and said, “There were still some living tumor cells in your esophagus on pathology. Knowing the cancer would have come back, are you glad that it was removed?”
“Yes!” he said emphatically.
“So you would maybe have balked and not gotten the surgery if you’d known in detail what it would be like, but now you believe that the surgery was absolutely the right option for you.”
He was catching my drift and giving that side-to-side nod that in the US means both yes and no at the same time.
“I need you to be honest with me. If I did the wrong thing by not going through every gory detail of your surgical recovery with you ahead of time, I need to hear that. I see lots of people who don’t have your ability to do detailed background reading and who will not feel comfortable speaking up to tell me I’m doing things the wrong way. Please think of them when you tell me if you think that I should push harder to make people deal with how difficult their treatment is going to be. I don’t have the benefit of your experience to tell me how to do this best.”
He thought on that awhile, and I chose not to add that doctors get themselves into a lot of trouble describing other doctors’ side effects. I did not point out that he had the ability to look that information up on the internet or ask his surgeon in detail about what his experience would be like but had chosen not to do so. I did not say what happens when I push people to hear things they don’t want to hear is that sometimes they fire me and end up getting no treatment at all. That tightrope is a very wobbly one.
Finally, he admitted, “Okay, okay, I see what you’re saying. Scaring people off from something they need is not helping. But people still have to make their own decisions. I don’t know.”
This patient and I are okay now, but I’ll admit, I don’t know either. Looking at the papers linked below, I’d guess that I’m not alone in that.
What do you think?
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Any views expressed above are the author's own and do not necessarily reflect the views of WebMD or Medscape.
Cite this: Kathryn E. Hitchcock. Is Shared Decision Making Always Best? - Medscape - Jun 04, 2021.