More comfortable attitude toward palliative care | I certainly don’t now see it as I’m in the final box or the chamber. He’s [palliative care physician] given me some hope, which is wonderful. I mean, I’m not hopeful or have any (or maybe way deep, deep down inside) wishes that things would be different, but I think he’s given me some alternatives. (P045i) I think the more you know about something, the less scary or the less worrying. You’re more comfortable. I think the more contact that we have with people like [palliative care team], it’s just, it’s more normal. ... Our “normal” now includes coming to the hospital; he goes and gets his CT scans, he goes to oncology, he also goes and sees [palliative care physician] and palliative care. That’s the norm. It’s just a part of what happens when you go to [the hospital]. (C046i) Yeah, I think it has given me confidence that hey, these guys really care. ... Yeah, things are going to be okay. Yeah. I don’t know what more I can say. Yeah, it’s given me confidence. (P023i) Well, my first reaction, as I say, to the word is, “Oh my God.” But when I realized that I really wasn’t going to die in 2 or 3 weeks and so this was something that was very, very helpful. So I, I could see the benefit to it and so then I sort of changed my attitude to palliative care. (P031i) |
Broadened definition of palliative care | I think the same thing as everyone else, “Oh, palliative care, I must be at the end.” But, I’ve come to learn that’s not the case — it’s an ongoing care and I’m very grateful to have it when I am feeling well and feeling strong and able to do things. (P010i) Yeah, that, in fact, it’s not just end-of-life it’s the whole symptom management, potentially through the whole ... through all phases it is available, and I didn’t know that. (P001i) I see that it now comes on in an earlier stage of my treatment. ... Earlier stage, rather than palliative care as in when they’re no longer treating you. So this is palliative care while they’re still treating you. (P008i) Because that’s right; it’s about the quality of living. And what you can do to help with that quality of living. ... And if anyone mentioned it, if anyone said, “It’s just about dying,” I would know now to say, “No. Palliative care is not dying. It’s living. It’s living the best you can with what ... the issues you’re dealing with, sort of.” Yeah. So I learned. (C003i) |
Team useful but name problematic | It’s just one of those ... it’s like anybody who has been raised with certain values or beliefs. Palliative care, in my mind, has always been final stages. Now I know intellectually, rationally, palliative care is not final stages, but emotionally I still carry that term as, perhaps a slightly fearful term. (P024i) [My impression has changed] of what the team does, yes, but not what palliative care is. What the team does, yes, and that’s why they should change the name. [laughter] (P043i) |
Avoiding the term “palliative care” | I don’t think I even refer to it as palliative care. That palliative word, not liking it, still not liking it, still haven’t adjusted to it. I just say I’m seeing [palliative care physician]. I see so many doctors there. They’re like, “Okay, that’s nice. Are you okay, relatively speaking?” It’s like yeah. I don’t even refer ... I don’t use that palliative word — the P word. (P066i) Well, I think just in my own head, just to make me feel more comfortable, I referred to her as my “medication specialist” as opposed to my “palliative care doctor” versus my “oncologist,” right? ... [To others] I say that I’m seeing my “medication specialist.” Sometimes if they ask a little more, then I will say that she is actually in the palliative care department but they branch out a little bit and they deal with people like me. ... Why? Because if I told people I was seeing a palliative care doctor, they would think I was going to die in a few weeks or months. (P040i) I mean, I would feel much more comfortable saying I’m going to the pain-control clinic. I say, “Oh, well, that’s cool.” You got pain, you get treatment for the pain. ... I’m trying to kid myself into saying, “You’re not really in palliative care. You’re just doing pain control, which is cool.” That’s kind of a deception that when the day is done I say you’re in palliative care, that’s exactly what palliative care means. (P024i) I don’t tell people I’m seeing somebody in palliative care. I just, I say, “Oh one of the doctors at [hospital] told me this or that” or “Oh, one of your team doctors?” “Yeah, yeah, one of the team doctors.” I don’t ... I don’t talk about it. ... They may just get so scared they walk away and so it’s best not to say anything. (P022i) I’ve never mentioned to any of my friends that I’m in palliative care. I think they’d go into shock. Or to the family. I think, to the best of my knowledge, they all have the same understanding that I had. (P013i) |
The care I received is not palliative care | I don’t think I’ve had palliative care yet, because I’m not on my last legs, not by any stretch of the imagination. (P007i) Palliative care [is] not, to me, sort of what we’ve had, because we’ve really, we’re so into the early part of it. (C061i) Somehow, it still doesn’t really change my feeling about palliative care because I think she [palliative care physician] gave me wonderful care. Somehow I can’t equate what I experienced with her as palliative. (P040i) |
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