Table 2 Quotes about prioritising patient preferences

Q1

My role has always been- Well, you know, in the beginning, it was always as a daughter. It was always to think, “but what would my mum want? How is my mum going to feel about this?”. Especially after the stroke because she couldn’t speak for herself. It was always, yes, from a point of being a daughter and thinking that, you know, “mum would do this”, or, “mum would want that”. (Participant 05)

Q2

So, it wasn’t like my mum was ever left out or they didn’t acknowledge her. It never felt like that. They did come in, and as they got to know my mum, they knew what she was able to do and what she couldn’t maybe do. So, yes, but she was always consulted, and then we jumped in where we needed to. (Participant 05)

Q3

We encouraged them [the care team] to address the questions to us while keeping him in mind and reassuring- Holding his [P’s] hand, whatever. […] It was always a debate as to how much he could understand, even for us. We didn’t sign with him; we didn’t think he could cope with that. We used physical- We basically just hugged him and stroked him, and so forth, to reassure him, and encouraged everyone else to do the same. (Participant 01)

Q4

He was, but, yes, he was involved. We did discuss it with him. But that’s as far as, I suppose, it goes, really. […] So, in a sense, he probably wasn’t involved in that final decision about the haemodialysis. (Participant 02)

Q5

[H]e would have just said to the doctor, “do what you…”. He’s not a confrontational person at all. He would go along with whatever the doctor said he thought was best. […] I mean, it’s an acceptance because I think that’s the bit of the nature of dementia really, isn’t it, you know, sort of, “everyone else can make the decisions for me”. (Participant 02)

Q6

Okay, so at that point mum could talk. She could breathe, so she was involved in that decision. We had some dialogue with her, me and my sister, and it was very much a family decision once my mum was informed about what it means. She wants to live. She wants to stay alive. It was just a case of, “well, that’s what you need to do now, mum, if you want to stay alive”. (Participant 04)

Q7

[T]here are religious aspects that you’ve got to cover for people – individuals with religious beliefs of keeping someone alive, the treatment that they should get, the treatment that should be withdrawn from them. These kinds of things, if you live in the society that we’re living in, we have to take that kind of stuff on board. (Participant 06)

Q8

Some people [understood], but then you can’t blame someone not understanding it. They’re not ignorant – it’s just that they don’t know about it. (Participant 06)