Representative quotations about initial perceptions of palliative care
| Theme | Control group | Intervention group |
|---|---|---|
| Death, end of life | What comes to mind is bedridden, death bed, finality. (P062c) Well, “they’re preparing me to die.” That’s about it. (P056c) Plots waiting. That’s what I think it is. (P017c) Terminal meaning that that’s the end of the road. (C057c) | You know, that’s just helping people prepare to die. (P043i) The care that you receive when you’re dying, when you’re dying. That’s what comes to mind. (P034i) It means death to me. It does. The end. (C068i) Well, when you think palliative care, you think the person’s on death row. (C055i) |
| Comfort care | It just seems to me of keeping the patient comfortable if they’re in pain, try to give them something to look after the pain. That’s about it. (P069c) I would only assume that it’s an attempt to make the patient feel as comfortable as they can, or as can be arranged, until the end. (P020c) I thought, what the heck is that? Then I realized they’re just trying to keep you comfortable until you die. Can’t ask for any more. (P056c) It’s to make sure that you’ve gone with dignity, painless and comfortable, comfort. (C064c) | Just they take you off medication and put you on just comfort care. (P008i) Our impression, or my impression at least of palliative care, was sort of keep them doped, keep them comfortable, make them as comfortable as you can before he goes. (P013i) I understand what it’s all about is keeping the person as comfortable as possible as they go through the end of their days, because whatever they’ve got is not going to be cured and they’re not going to survive or they’re not going to be healed and palliative care is all about keeping them comfortable and allowing them to die in dignity. (C035i) |
| No more choices, nothing left to do | This is it, no more choices. (P049c) There’s nothing and it’s end-of-life, like you’ve reached the end of anything that can be of any help to you. (P041c) Because when it comes to palliative, they’re always sad that they didn’t help, that all is over. (P048c) The stage of palliative care, hope is kind of more or less gone. (C070c) | Well, the basic one is the psychological one that, “Now I’m going into palliative care, which basically means there’s no hope for me whatsoever and that I have very little time left.” (P015i) Dying, end of life, nothing left to do. (P025i) But in most cases, you don’t see palliative care, or anyone in palliative care, until you have come to the point where they’ve told you there’s nothing else to be done. (P014i) |
| Loss of autonomy | Well, I guess what comes to mind is that the end is near and that you’re in a situation where somebody else has to take care of you. (P037c) It just sounds old and sick and helpless. (P065c) Basically they are so sick they cannot do more than that, just stay there and to wait for the end. (P050c) | I guess palliative care is when you’re pretty much at that stage where you can’t take care of yourself any more. (P045i) When you think palliative care, you think bedridden, unable to look after yourself on any level. (P040i) That’s about it really. Not doing anything, just laying in bed and waiting. (P023i) |
| A place to die | No, no, I knew what palliative was. ... I knew exactly. I said, “Well, palliative is, oh God, where people go to hospital to die.” (P047c) I guess that’s the house where people are who don’t get well any more. (C059c) Well, to me, palliative care is the place where you go to die. (C064c) | I knew there was such a thing as palliative care but I just always thought of it as there are places where people go for palliative care when it’s known that they have 2 months to live or 3 months to live or 1 month or whatever the magic numbers are and whatever the situation is. (C035i) And it’s a place to die. But they make you as comfortable as possible and of course, nobody likes to think of pain and I guess they give you the very best painkilling treatments that are possible. (P023i) |
| Unsure of meaning | I don’t even know the exact definition. Is it for someone who’s dying? (C039c) First and foremost, I never knew what palliative care was to be honest. I never looked it up in the dictionary or, I did nothing and we don’t have this care back home. (P052c) Scares me a bit. ... Even though I don’t really know what it is. I don’t know really what it is. (C059c) | It’s like a foreign language, palliative care, yeah, but I didn’t really have any connection to what it was. I just had an idea that it was when people were dying they had palliative care. (P034i) What does it mean? Is it Greek for something or Latin for something? (P045i) I didn’t even know what palliative care really meant. (P002i) |