Table 4 Representative quotes for prognostic communication codes
Code | Example language coded |
|---|---|
Prognostic uncertainty | • “The bone marrow looked a little bit different - but it didn’t really look different on PET scan, so I don’t know what to make of that at all.” • “These little things, I’m not even sure what they are. I’ll show you the pictures. Um, they definitely don’t light up at all, but they are so tiny and the radiologist doesn’t even know what to say about them either.” • “It looks [like] maybe a collection of fluid kind of along the spinal canal in that lower part, we aren’t entirely sure what that is, or why it’s there but it doesn’t really look like tumor either, so we are not entirely sure what to make of that other than we know that you’re doing well.” • “Some places that we worry that it might be getting worse - but nothing that I can say for sure.” |
Disease changing for the worse | • “Remember this? Last time there was maybe this new little thing on the other side. That is there and maybe looks a teensy bit bigger. Okay? There are no other new spots in the lungs, and that being said, I’m talking like a millimeter or so bigger - but definitely a little bit bigger.” • “One of those areas has turned dark…which looks exactly like the original tumor when it came back, so that’s why I want to do a PET.” |
Best- and worst-case scenarios | • “We can hope it’s an infection that obviously isn’t bothering her, but I’m very worried that it could the cancer.” • “Again, I wish I could walk in and say, hey everything disappeared, that would be the best news, so I don’t have that news, but the worse news would be that things are worse and that is definitely not the case |
Curability | • Clear: “This is getting better. Is this medicine going to cure her? The answer is very likely not. We know that. But it’s giving her very, very good quality of life, with relatively little interruptions.” • Cloudy: “Our first worry is God forbid this is awful thing comes back, and if it comes back this early we’re in big trouble. You know after all the treatment he’s had, you know.” |
Assessing prognostic understanding | • “Ask me more questions because you don’t sound satisfied. You just said ‘ok,’ but you need to talk to me a little more.” • “Does that make sense? Are we sure?” |
Survival time | No codes |