Table 2.
Representative Quotes
| Outcome | Patient Perspective | Physician Perspective |
|---|---|---|
| Distress | My kidney doctor calls me up and says, “Oh by the way, we found a tumor on your lungs.” They didn’t even know what it was, but it was just the way [he] came out and said it. I was devastated.… I bawled through Christmas.17 Basically I was devastated. I thought I had cancer. I called my son and my daughter-in-law and told them I needed to talk to them. You know, in Oregon they got assisted suicide, and there is no way am I gonna be like my mother. I do not want to get to that point. But I would go the route of assisted suicide.18 Oh, I wouldn’t have minded a biopsy right away. Because then you know. With the family history I think like, why wait a whole year? Because that’s a whole year of me thinking about it. And that’s a year I got to worry about it. I’m an insomniac, I already got enough sleepless nights.38 Actually, I don’t think I even asked [the PCP] about anything. I was more concerned with this pressure in my stomach there and that kept pushing against my lungs and making it a bit difficult to breathe and trying to figure out what that was. Because that I could feel. And that’s what I wanted taken care of. And something that wasn’t bothering me [the nodule]—forget it—I couldn’t care less.18 I’m not living thinking that I’m going to get cancer from this… Yes, there’s a possibility that I could. But at that point in time I will deal with it. I do not worry about something before it happens.26 |
…I feel like you must bring [cancer] up because that’s something that if they’re not thinking it, then maybe I didn’t need to bring it up. But if they’re thinking it and I don’t bring it up then that’s what’s going to worry them when they go home. So I try to be very up-front with what we’re evaluating.32 Some people are super worried…They give you a story about their brother who had cancer and had a very bad experience because the doctors didn't get it in time and now they have metastatic cancer. You're like, ‘all right, I guess we'll do the three month [CT scan].’ …Would I be convinced to biopsy something I didn't think was [cancer]? Maybe, but certainly not go beyond anything more invasive than that.33 |
| Knowledge about nodule (or lack of it) | Yeah, [the PCP] explained what calcification meant, that that was an indication of how you can get nodules, why it’s likely that what I have is from other things that occurred earlier.35 It’s kind of—hearing ‘nodule’ it’s like in that movie Armageddon when they talked about ‘anomalies.’ Stop with this ‘anomaly’ horse-shit. Tell me what it really is. Stop with the ‘nodule’ thing. What’s really going on? It doesn’t mean anything. I don’t even know what a ‘nodule’ is. A spot? A pocket of weirdness?18 It’s a scary roller coaster ride… I’ve never gotten any definitive answers… And that’s scary in itself, not knowing.26 There was really no explanation at all. Just, ‘This is it, this is what we’ve found, we want you back in 6 months.’ And I was like, ‘Well, what should I expect? Should I expect to not be able to breathe at all? Should I expect pain? Should I expect changes in my physical self?’ And no [answers] ever came.17 |
I don’t [use the word ‘cancer’] because I’m not that worried—yet. But I’m not specifically trying to avoid worrying the patient. I’m just giving them the information.32 We usually don’t mention lung cancer specifically; we leave it a bit more nebulous. “There’s a non-specific abnormality. We don’t know what it means. But we do have some concern about it and we’re ordering further testing.”33 |
| Patient as person | All I’m doing is being a patient, you know? No doctors have been asking me my opinion.38 Yeah I didn’t know what [the nodule] was so I didn’t concern myself. I went on vacation anyhow. I feel okay. I feel fine. If it’s something life-threatening or something like that, I’m sure I would have been notified. I trust [my hospital] implicitly.18 Would [doctors] want to go through that every 3 months?… Knowing what they’re putting them through?… They’re looking at the medical part of it and… not thinking of the consequences.17 |
If you’re with the person, you hear it in the tone of what they’re saying or in the body language.32 You pretty much know your nervous Nellies. And you know who’s going to worry and you know whose wife is going to worry.32 |
| Therapeutic alliance | [My doctor] said, “I think even given the risk of the increased radiation, it’s probably a good idea.” I trust her. We discuss everything. And so I feel very comfortable with what I’m doing.17 I had confidence in him [PCP] and I figured if it was something that he was really worried about he would have done more about it. Even though it made me feel kind of iffy about stuff, I figured that he wasn’t worried so I shouldn’t be.18 |
If [the patient] says, “whatever you think, doc,” I usually don’t leave it at that… I’ll tell them what the stakes are and what the situation is, and I’ll say to them, “I can’t really decide for you.” I’ll specifically say, “Some people, as soon as you mention that there is something in there that could be a cancer, even if it is unlikely, they want it out right away, and other people don’t worry about these things at all. What kind of a person are you?”… I think by and large patients make very appropriate decisions. And I think their adherence to those decisions is enhanced when they have participated.”33 |
| Preferences and values | I wouldn’t want to get that information over the phone. I would have wanted him to show me pictures, explain what it was, what’s going on. I’m an ‘information’ kind of guy.18 I want to know the pros and cons of it before I make any decision. You don’t just go in and say I’m gonna do it.38 I would like to know. I don’t—you know if I knew more about them [the nodules] then I guess I could make a plan but I don’t know.18 I don’t know enough about what I have to make an informed decision on my own.38 |
I’d say I pretty much tell them what their radiologist recommends. I guess my patient population tends to be one that says, “You’re the doctor.” They’re not a population that questions things a lot… They tend to be pretty adherent to recommendations. I can’t say there is a shared decision process going on. It’s kind of like the radiologist is deciding; I’m respecting the radiologist; they’re respecting the radiologist.32 I try to lay out what the options are and explain the pros and cons [of] the different options, and I try to keep it in layman's terms… Most people are able to give me an idea of which direction. They're like, “Oh, I would worry too much and I just want to have it [removed],” or “I really just don't want to have any surgery.” People are usually pretty clear on what they want… I usually say, “My preference would be this, but they're both possible options.”33 |
PCP = primary care provider.