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Table 5 Quotations from post-intervention qualitative interviews with family members, which helped to interpret the quantitative results

From: Development and evaluation of the feasibility and effects on staff, patients, and families of a new tool, the Psychosocial Assessment and Communication Evaluation (PACE), to improve communication and palliative care in intensive care and during clinical uncertainty

Aspect Patient comments
Symptoms …when he’s been on the bed he’s sort of moved and he’s gone ‘Oh’, and he said he’s in pain. I’ve then called the nurse over and automatically she’s given him painkillers, or she’s checked the chart to see when he’s had his last painkillers and given him painkillers… (Family member of patient 5, Phase 2)
…there were reasons why it was hard to identify that actually it was… she was complaining of the abdominal pains, but because of the complications it was hard to actually sort out the factors, you know, what was the reason for it. It turned out to be the most serious of the three but that, I mean that was identified and then they flew into action… (Family member of patient 7, Phase 2)
Communication …because I do ask… I said to them ‘is he under any sedation and have you taken him off this, have you taken him off that?’ and they’re saying about his sodium level is a bit low and I asked them what that meant and they explained that to me so, you know, they are really good… I’ve got no qualms with asking the nurses anything.. (Family member of patient 10, Phase 2)
…some of the doctors are really good and they explain things or they say ‘do you want to talk to us?’ and then I will, I’ll ask as many questions as, you know, as I can… (Family Member of patient 1, Phase 2)
Prognostic uncertainty and decision-making …I have to say that everybody without exception explained everything very patiently and, um, you know, could take the time to explain what was happening, what the risks were, what the likely outcomes were or could be, um, and equally to admit that on occasions they didn’t know, which was also refreshing, yeah… (Family member of patient 10, Phase 2)
…I mean it’s been a bit sort of touch and go, um, when was it, not last weekend, the weekend before, we were told he’d only got 12 to 24 hours to live, um, and it was a bit, because it was such a shock, because he’s not had any symptoms, he’s never been ill in his life… (Family member of patient 1, Phase 2)
Meeting individual wishes …he doesn’t want any tubes down him, he’s made that quite clear. Even if he gets worse, they were telling me his breathing, they can put a tube in to help his breathing, doesn’t want it, he said he does not want it, and his wish, you know, I said ‘Well that’s his reply, then stick to that, that’s what he wants’… (Family member of patient 5 Phase 2)
Supporting dignity, respect and peace …they move him all the time because of sores and, you know, they’ve had to put things on his legs because his legs was turning in and, you know, when I, when I said ‘oh’, you know, and they’ve said ‘oh we put them on to straighten the leg’ and I think ‘god I wouldn’t think of things like that’. They’ve been really, really marvelous, as I said I can’t knock ‘em and I take my hats off to ‘em, and they have every time I’ve come in they’re washing and shaving him, which you don’t think of stuff like that while he’s there, d’you know what I mean? And, um, absolutely fantastic really. (Family member of patient 10, Phase 2)