Table 4:
Representative quotations about initial reactions to palliative care
| Theme | Control group | Intervention group |
|---|---|---|
| Shock and fear | I don’t know, because it’s a bit of a surprise to hear that related to you, so it’s sort of a jolt, a wake-up. (P041c) It would be like you’re sitting here and someone says, “Your house burned down!” Like, what does that mean? (P004c) I said, “No, no, I’ll fight it. I’m not going to go for this palliative care.” It scared me, it did scare me. (P052c) |
To us at least, it was a bit of a shock. ... we had a preconceived idea of what it was, which was clearly wrong. (P013i) I was very surprised when ... I thought, “Oh my God! I’m sicker than I thought.” (P031i) The word is extremely frightening because it’s like we can’t do anything for you. We’re putting you in palliative care. (P025i) |
| Resistance to palliative care* | If palliative care is ... “We’ve got to get into some palliative care,” I’m going to say, “Whoa.” I hope I never hear that. I like to think of it like a candle. You burn ... life should be like a candle, burn bright, flicker once or twice and go out. That’s what I want to be, a candle. (P069c) That’s one of my, I don’t know if it’s a fault or whatever, but my husband used to say I’m an ostrich; I put my head in the sand. I don’t deal with it, I’m fine. You don’t want to deal with it unless you really have to. (P065c) I’d have to be ... if I were an awful lot worse where I thought I was going to be a burden to my family or something like that, then I might bring it up. ... Other than that, I would do almost anything before I did that. (P060c) I think because we haven’t, we don’t look there, we don’t go there, we don’t dwell on the negative part of that. I guess, to me, in a way it’s a bit of a negative. (C070c) You’d never get him into palliative care first of all [laughter], but I think it would have to be ... I don’t know. He would be a difficult case. ... like something would have to completely debilitate him before he would even consider the option of palliative care. (C030c) |
It’s like we don’t like it. It’s like that’s about dying, death. I’m not doing that, thank you. I think yeah, that would be my initial response to it. (P066i)*† Well, I knew that palliative care was out there someplace, but obviously it was something that I was trying to avoid. [Oncologist] was good enough to be able to say that, “Maybe you should think about palliative care in a little different way, and this would be useful.” So, it was actually the doctor who put the positive spin on it rather than the negative consciousness that I had of it. (P015i)*†‡ They mentioned palliative care and I went, “No!” You know? You know, “I’m not ready for that.” And then, she went further to explain that it was — the approach wasn’t meant to be, to put them in the end of life care, it was just same as me ... study, early intervention. (P025i)*†‡ Right away I thought, “This is great, this isn’t what I thought it was at all.” It was good. ... They explained it right away. Maybe if I had gone away thinking that, “Oh, I have to meet up palliative care,” then maybe I would have had time to think about it and maybe I would have been more nervous about it. But, because they did it right away, there was no waiting, big waiting and time for you to think up things. (P010i)*‡ |
| “Not relevant for me”* | Never really thought of it, to tell you the truth, because in my head I’m optimistic. (P020c) I don’t expect to be in that predicament for a long time coming yet. It’s very foreign to me. I don’t think about it much. (P065c) No, we never discussed it, but I have no doubt that we may one day, we will one day. But, as long as it’s far, far away. (P017c) I think that it’s that I haven’t really been that sick in the sense of being debilitated and you know what? I don’t even know the stages of cancer. I think I know I’m at the top where it’s not operable and all of that but it’s not at the stage where like I’m going to leave soon. We don’t know and I think maybe because of that, nobody has ever really brought it up nor have I or maybe partly, because I don’t want to. I don’t know. I haven’t thought about it till now. (P037c) |
I went, “Well, okay. I’ll help the research,” but thinking to myself, “I don’t qualify. It’s not for me.” (P043i)*† Well that was my initial reaction to it, I thought, “palliative care?” Because I always think of it as someone in their last, you know, in the last few weeks of life. ... But when they started to explain that perhaps it was useful, I, as you know, like to talk so the idea of having someone to sort of unburden to, I thought that was a good idea. So I was very willing to participate. (P031i)*†‡ So, that’s how I was introduced to palliative care. ... It was presented to me primarily as a method, a sourcing of pain control and the pain I had been experiencing in my ribs was significant enough that while I could live with it, it was fatiguing. (P024i)*‡ |
*
For these themes, intervention group quotations include both
†
examples of initial reactions and
‡
examples of how these reactions were mitigated by explanations from their treating oncologist or from members of the research team who introduced the trial.