Table 5 Quotes from participants

Q1

"If you're running a competitive business ... you've got to develop something that's special ... it has helped the home acquire more clients ... in the past there were difficult times, so it needed that to actually boost it - the reputation a bit, you know, and restore the confidence of people... (Manager of Earlier Phase home 13)

Q2

... I am still in the early stages really, it's a slow process ... I think it would be very difficult, because if you don't have an understanding of palliative care, the terminology that they use on all the paperwork, there's a lot of paperwork, I think I would have struggled ...We've been fortunate that there is a facilitator in the care home support team ... but I feel for it to be effective, there should be more input. I think with the managers, it's time management ... lots of managers would like to do it, but the time it takes to discuss with staff and get all the paperwork, discussion, discussion, discussion, and unfortunately, that is time, and we don't have that time. (Manager of Earlier Phase home 03)

C1: Communication

Communication with GPs

Q3

I think our GP has done a fantastic job ... he's given us his printed history of the medical episodes of each patient ... all the medical histories, all the drug changes ... (Manager of Later Phase home 21)

Q4

He is a young man. He is very nice, and he listens to what you want to say. He doesn't wash you off as any old thing. He is a really lovely man. First class. You couldn't have a better doctor in the world. He is wonderful. (Resident in Earlier Phase home 28)

Q5

The GP was a problem ... because Gold Standard Framework, in order for it to be running well, you need a GP that's cooperating. So the GP needs to take it as their responsibility. Because we needed to involve them - that was the difficulty, you know, because of their time. There was the lazy response and things like that ... And also the cooperation of the family as well, that's- that's monumental because obviously some families, as you know, will not visit. (Manager of Earlier Phase home 13)

Q6

... and I must tell you straight, he's not my idea of a doctor. Doesn't show any interest in what's going on at all ... I should say four minutes was all the time the man was in the room and away he went. (Resident in Later Phase home 31)

Q7

[name of doctor] came here to see her [resident], he was assessing her ... but he hasn't got back to me ... I don't think ... what his results are, and this is very frustrating. (Daughter of resident with dementia in Later Phase home 31)

Communication with others

Q8

Some of the carers especially, they seem to be afraid sometimes of reporting things or saying things in case it's the wrong thing, that they'll be blamed, and that's something we're trying to get over ... to them because, at the end of the day, they spend more time with the residents than anybody else ... (Manager of Earlier Phase home 30)

Q9

...there's one of them can't even speak English and I can't get through to her, the one nurse, you know ... (Resident in Earlier Phase home 13)

Supportive care register

Q10

It works well ... from that point [going on to the supportive care register] there's no need to ask questions or whatever. We know what we're doing because we communicate with each other). (Care Assistant working Earlier Phase home 30)

Q11

... I just feel it needs to be more explicit [supportive care register] ... but that depends on the nurse - but I just also feel that their needs to be ... a guideline to say what to record ... (Manager of Earlier Phase home 13)

Coding predicted stage of illness

Q12

There is a separate folder ... which you can go and look at to see how the residents are colour-coded. I find this very useful. If you know someone is dying, you care for them sensitively and are aware of their needs and also their families' needs. (Care assistant working in Earlier Phase home 03)

Q13

... we struggled at first [with coding stage if illness] because nobody wants to think in those terms, but I think ... it's something that's coming a bit more naturally now. (Manager of Later Phase home 33)

Q14

My mum's 84 now, she could last another 10 years couldn't she? (Daughter of resident in Later Phase home 31)

Q15

This lady that died, they only gave her a couple of months, she was here two and a half, two years with us. (Nurse working in Earlier Phase home 03)

Team meetings

Q16

Now, I think we have a problem with that. Um, and that's because of the meetings not being as regular as they should be. And that's why we're sort of picking up and dealing with that now, so we can sort of get up and back on track ... I think it should be fine, and get - as you say, pin the GP down (laughs) and get him into a regular routine of the meeting. (Manager of Earlier Phase home 03)

Q17

I don't think there was any sort of coordination involving the families anyway. What went on behind the scenes I don't know ... would like to have been part, more part of it ... there should be, I think a periodic meeting between at least one representative of the family and somebody representing the care home and maybe, maybe the doctor or whatever ... (Son whose father had recently died in Earlier Phase home 30)

Advance care planning

Q18

... so we can really establish, otherwise ... no questions, why did you leave them in the home? Why we didn't, why did they send to the hospital, but if it's there, and it really made their wish then we are covered. (Nurse working in Later Phase home 21)

Q19

It's upsetting and depressing even talking about it. (Niece of resident living in Earlier Phase home 30)

Q20

For me its difficult to accept but if residents are willing to discuss [advance care plans], then by all means ... But not all individuals will want to discuss it. (Care assistant working in Early Phase home 03)

Q21

Some of the carers might not be, because of culture or whatever, might not be in a (pause) I want to ... say it kindly ... a good frame of mind to accept death, because... they look on it in a different, a completely different way in their culture ... cos most people do and some wouldn't not like to talk openly about death. They see that as a taboo subject, so that's one of the barriers as well ... actually using the word 'death' and 'dying' that's an obstruction as well, a lot of people don't use those two words. (Manager of Earlier Phase home 13)

Q22

I don't want no-one to come and talk with me about that, I just don't, that's ... cos it'll start me off on getting me depressed. (Resident in Earlier Phase home 13)

Q23

It [advance care planning] might seem like a good idea to me. But again, it's down to the implementation. I think ... just tokenism. (Son who's father had recently died in Earlier Phase home 30)

Q24

... all I have to send to the hospital with them is this piece of paper and I think half the time the doctors and the nurses don't even look at this in hospital because like the gentleman I was telling you about that we sent to hospital - had they looked on this piece of paper, that he has written down there that he didn't want to be resuscitated they would've like not gone through so much intervention. (Manager of Earlier Phase home 13)

C2: Coordination

Q25

Well, it works well ... he [GSFCH lead] comes back and shares that information with us, and you know, what we have learnt, we have different links for each floor as well, so they link into him. (Manager of Earlier Phase home 13)

Q26

... amongst everything else I've got to do ... I think somebody else should be doing it. (Manager of Earlier Phase home 30)

C3: Control of symptoms

Q27

...assessment will get better if we use a tool designed specifically for end of life. (Manager of Later Phase home 21)

Q28

... our patients have some dementia ... you already have a difficulty addressing symptoms in mass you know, because they can't verbalise "I've got pain," and some of them can't verbalise they've got pain so you have to rely on non-verbal signs to identify pain and with a very confused patient, that could be very, very difficult. You know, so ... we - I think we do have to be very careful of how we are assessing pain, you know, and hopefully make a tool work for that resident. (Manager of Later Phase home 21)

Q29

... varies sometimes from nurses to nurses as well. The issues is that sometimes it's difficult to tell, you know, they psychol - you know, but certainly when it comes to assessing those things, you know, the nurses would carry on that, you know. But they're, depending on the way a different individual interprets that...sometimes can be different, you know. (Manager of Earlier Phase home 13)

Q30

[nurse from hospice] comes in to give us a bit of support, and whenever we have a client that comes in and we feel that, you know, the pain area must ... we always contact them [the hospice] and then we get their advice and everything, and we move forward in liaison as well with the hospital and the GP. (Manager of Later Phase home 34)

C4: Continuity

Q31

... it gives guidelines to the out of hours GP when he comes to know what the way forward is. Do I attend for this resident and send to hospital? Is it because maybe there's a chest infection that can be treated and they can come back, or is it you know, the culmination of the disease condition - that the person is progressing that way, and there's nothing much that the hospital can do? It helps him make a decision of whether to send a client to hospital or not. (Manager of Later Phase home 34)

C5: Continued learning

Q32

... you are learning to become aware, so that if you have somebody who is a culture which you are not familiar with at least you know how to cope with it, and when they are performing whatever rites they have to do you don't, you don't look down on them or you don't just, it's because some people might think, oh I'm a Christian I don't have to do this, but it's their right ... (Nurse in Later Phase home 31)

Q33

They [care assistants] ought to have a proper training period ... so they've got a certificate to say they've been through it... and also regular training as well - refreshers, like teachers have to do ... Now there, there is a problem there with money ... because who's going to pay for all this? (Son whose father had recently died in Earlier Phase home 30)

C6: Carer support

Q34

I suppose sometimes with the workload it's a bit difficult and sometimes, you know, they come on duty and they've got family commitments and then sometimes you want to sit down with them and talk to them, and at the same time there's work to be done. (Manager of Later Phase home 34)

Q35

I don't think that's anything to do with them [emotional support from staff], some people might do, I don't know ... as I say I'm a more down to earth pragmatic sort of person, I like to get on with it myself. But other people might need it, because they knew their parents I suppose. But again, is it their business? I'd rather they spent their energies on looking after the old folk who are still alive than worrying about me. (Daughter of a resident with dementia in Later Phase home 31)

C7: Care in the dying phase

Q36

I think it's something very good, if it is explained, and people understand. ... I find it most, however, promoting good communication ... Promoting thinking and better planning, including psychological, social and spiritual ... (Nurse working in Earlier Phase home 30)

Q37

...the only time I can implement it [LCP] is when somebody is going to die, I thank...that it doesn't happen quite often here. So when it gaps like that you need to retrain the memory. (Manager of Later Phase home 21)