Table 4 Indicative quotations: (Not) Talking about death and dying

Caregiver #11

It’s not in our culture to say you’re going to die. I don’t even want to accept myself still. I know that she is ill but I’m still thinking you never know. Miracle may happen or something. It’s hard but I will never tell her. She doesn’t know now. She doesn’t know. I don’t think I would like her to know because she’ll be scared or something. But in our culture you never say to the patient.

Caregiver #1

Sometimes being completely honest and brutal like that is not the right thing to do from a cultural background … I would have told him, “Look dad, there is a tiny little spot that they found there. They’re going to investigate it further. We don’t know exactly what it is. You’re in good hands.” … dad thinks that by talking about death or telling him he’s dying, that you’re going to bring it on, bring on the process a lot quicker.

Caregiver #3

In my culture, they don’t really talk about dying. They’re scared of it…They don’t want to think about my grandma’s going to die. They just deal with it day-by-day. They don’t really plan and they don’t really say, “Oh, yeah, she’s going to die soon.” They don’t want to talk about it.

Patient #16

It’s a cultural thing. But cultural thing a lot of sons they would say, “Yes, yes,” kind of a thing and not get so involved. But my children are very involved and I presume they love me… I would [be] more content to have my sons have it [knowledge of the details of the patients’ prognosis] than to me because, you see, it unnecessarily worries me and it doesn’t solve anything. So I would be happy if my sons know everything about it and they gave me information and that’s okay with me because I trust them implicitly.

Patient #5

So we could [not] say that “I am sick, I am so unlucky, I’m an idiot” Because that will influence the effect on us. So we all say that “I am happy, I’m fabulous, I’m so beautiful.” I have to say like this.

Patient #8

It was on [date] and she actually said, “I think it’s cancer.” I remember how shocked I was that a doctor could throw a word around word like that…So to hear the word, I was really upset. How can you throw a word around like that?