Table 8 Exemplary excerpts from qualitative data

End of life or death of a close one

5

(1) “Well, there was your brother, that became suddenly sick with a brain hemorrhage … he was left 4 months without speaking, being able to move, walk, nothing … Heu, I was pained by that situation (…) and after all, he had a chemotherapy anyway …” (D1V1, relative)

(2) “There was my brother’s wife … so, her son, was on artificial nutrition. It stroke me … » (D6V1, relative)

Difficulties communicating on this topic

4

(3) “You (PWD) don’t like to speak about that … seriously, when we are only the both of us. So … when there’s someone else (the ACP facilitator), it helps...” (D1V1, relative to PWD)

(4) “Our children, they are a little bit avoiding this conversation. (…) Yesterday, we said to our son that we would meet you this morning … and suddenly his expression changed, he shuttered us out. We feel that in his opinion speaking about that might bring us all bad luck” (D4V1, relative)

Preference for no futile care

5

(5) “Well, our treatment preference is … no futile care … it (dying) should be quick” (D2V1, PWD)

(6) « Relative: Actually, my mother, she always said that she didn’t want futile care to keep her (alive) …” “PWD: Yeah, I told you all that a long time ago.” (D16V1)