Representative quotations about sources of perceptions of palliative care
| Theme | Control group | Intervention group |
|---|---|---|
| Health care system experience: caring for family, friends | The nurse looking after him took him on another floor. That’s where the palliative are. “People are here to die,” or “they’ll never get out of here,” or something like that. (P047c) My father-in-law was in the palliative care unit before he died of lung cancer, and so it was in palliative care nothing is done to sort of advance anything. It’s just make you as comfortable as possible until you die. (C030c) I know a lot of people in [residential hospice]. That is totally palliative care. ... People in there never come out. That’s how I look at it. I presume that’s more or less the fact of life or whatever. (C057c) | My ex-husband actually died. ... He died in 3 months. But for the first period, they were treating him and then they said, “We can’t do anything else, he’s in palliative care.” (P031i) Yes, when my wife passed away. Three years ago she had a massive stroke. ... Was taken to the hospital of course. ... She couldn’t speak. She was paralyzed. She couldn’t talk. She couldn’t swallow. She couldn’t do anything. Just lay there. And after 3 weeks the nurse said, “I’m sorry, I think we’ve got to put her into palliative care.” Of course I started questioning, “what the heck is that?” So found out all about it and so on and that’s when I heard. (P023i) [My mother] was frail and she was ... so anyway, with the palliative care, that’s where it came up during the last week of her life I heard about that. (C067i) |
| Health care system experience: own cancer care | Well, palliative care was introduced to me by a doctor that didn’t know my case very well, and that specific doctor said, “Well, you know, speak to Palliative Care,” and it was like someone had hit me. I was shocked. To me that means I have 6 months to live. (P004c) | The very first time that one of these home nurses came to my house, right, she said ... “You’re not in palliative care, like you’re dying of anything, are you?” And I just looked at her, I remember just saying, “Oh, is that what that means?”, I said. (P002i) When I first went to see the oncologist, she told me that sooner or later I would meet the palliative care team, and then reassured me that, “Oh no, that won’t be for a long time.” ... So she, herself, had that same association somehow in there, so as not to panic the patient. (P014i) |
| Media, films | It definitely, in the media, is associated directly with kind of end-of-life, so that’s always hard. (P036c) Yeah, there was this movie about a woman with ovarian cancer and she goes into palliative care, yeah. You know, and I think, really, when I think of it some of the images that I’ve seen in the media have influenced how I feel about palliative care. (P004c) I feel that it’s portrayed [in the media] in a very dramatic way. It’s joyless. I think, if done properly, it can be an opportunity for a tremendous amount of joy. At least that’s my goal with [patient]. (C019c) | I think it maybe was just a newspaper article about some important person who had passed away. And they just mentioned that they died in the palliative care department or whatever they call it, of such-and-such a hospital. (P016i) Well, I think in general it’s just from reading generally because there’s various places that have palliative care units and usually those as far as I know that’s when patients are in really in their last stages and can’t be on their own anymore and I guess they have to be where the medication has to be administered often and regularly and maybe they can’t even get up. (P026i) It’s probably articles I’ve read that people maybe were at the end of life and they were in some kind of hospice, which was referred to as palliative care. (C046i) |
| Unsure where | I don’t know where the devil I first heard it. (P056c) I have no idea. I mean I’ve always known about palliative care existed. (P037c) I have a sort of a concept, but where it came from I have no idea. (P020c) It’s just sort of a word that popped up and it’s just been there. (C039c) | I just think I knew palliative, I just knew the word associated in my mind with care that you would get when you were at the end of your life, when you need that intense care. I think I just knew that. (P010i) Well I knew it existed just from hearing about it, I mean, in the world. (P025i) If it’s urban legend or myth or whatever, it’s in my head so that’s what I thought. (C044i) |