Table 2 Indicative quotations: terminology in the transition to palliative care

Caregiver #1

I’m the type that when you tell me something, especially with regards to my parent’s health … I’ll go and look it up on the internet and research it so that I understand what’s going on so I can help them through it. … even if I had to try and explain it to him using palliative as the word, I couldn’t because it doesn’t exist. It doesn’t exist.

Caregiver #4

Interviewer: How did the staff explained palliative care to you?

I find it out from the web. Yeah, I find it out from the web. They have explained, but I was still a little bit puzzled by the explanation.

Caregiver #2

Interviewer: Looking back, do you recall what your understanding of palliative care was before your husband came to [Palliative care unit]?

Special cancer.

Patient #11

Actually, I don’t know. I don’t think I really know what the word palliative means.

Patient #1

P1:They’ve never heard of it [palliative care] … No. I mean they will give you all the medicines that they can afford and if they can’t do anymore then people normally they will just go back to the Island or the village where they come from and just ready to die. They just, just accept it.

Caregiver #3

The thing is, my grandmother, I don’t think that she knows what palliative care means. I think my aunties were trying not [to] tell her that she’s going to die or something… They don’t want her to get upset and stuff like that. She doesn’t really know what it means to be in palliative care. That’s the main thing. She thought that she’s here, I don’t know, maybe she’ll get better, she said.

Caregiver #9 (via interpreter)

Her understanding is that palliative care is for the patients who can’t, at the moment because she can still look after him medicine-wise, can still give him the medications he needs, but because the palliative care is for people out of that, what do you call it, too far gone, I guess. That’s her understanding of palliative care.