ESM 2 Quotations from participants
ICM reference: ICM-2010-00929
“Wait and see” as a communication strategy in end-of-life decisions in the Intensive care unit: A qualitative study of family members’ experiences
Ranveig Lind1 RN, ICN, MSc*, Geir F Lorem PhD2**, Professor Per Nortvedt Rn, PhD3***, Olav Hevrøy MD PhD4****
1Intensive Care Unit, University Hospital of Northern Norway, Department of Care and Health Sciences, University of Tromsø, Norway, 2Department of Care and Health Sciences, University of Tromsø, Norway, 3Section for Medical Ethics, University of Oslo, Norway, 4Intensive Care Unit, Haukeland University Hospital, Bergen, Norway
*Corresponding author
E-mail: , Tel: [+47] 91184108, Fax: [+47] 77626192 Address for reprints: UNN HF, Intensiv, Opin-klin, Pb 6060, 9038 Tromsø, Norway
**E-mail: , Tel: [+47] 77646533
***E-mail:
****E-mail:
Unavailability
We’d been told we could speak to a doctor at half past one. So we sat in the waiting room the whole day until we were told the doctor couldn’t talk to us. It was way past the time when they told us. This was pretty typical, getting to talk to a doctor was very difficult. I do understand that it …., that saving someone’s life is more important than looking after a patient’s relatives who really need it. But it’s all about capacity, that’s what it is (No 1).
I expected more…from the doctors …, some humanity, you know, being offered something else than those measurements and blood tests... It was like they were talking over your head (No 5).
It wasn’t easy to get to talk to doctors, they had far too much to do. They were very, very busy. And quite a few of the intensive care nurses had obviously been given clear instructions to say nothing. If I asked how she was, they said there was no change, and that was all they said (No 6).
She seemed so remote, that nurse I met there…she was trying to delay…. to and fro….and then she didn’t know……then she said she’d see….and check and… I don’t know how much experience they have. But I don’t feel we were taken care of the way we should have been. It’s obvious you’re in a state of shock when you have that kind of experience and then you only get very vague and uncertain answers, it’s just not good enough! You really need to get clear answers (No 17).
There weren’t many conversations. I had to ask them. The doctors were...... One of the things they maybe could do better ……is to take more time, but still I realise they’re busy, and so on. But….but…..they could maybe have taken more time. However, I got to talk to the nurses all the time. They weren’t at the meetings with the doctors, but then I could carry on with the subject because they knew much more than they’d admit. They were much more woolly, they didn’t get to the point….like that…..And if there was a touchy subject or something specific about the actual risk and the chances, they said the doctors had to answer that (No 18).
Ambivalence
They did have some hope, they said so. Noone can take away your hope, if you look at it like that. And then those infection tests showed an improvement and he moved his legs by himself, and he moved his arms (No 10).
They said it could go either way, but the doctor was positive about it. It gave me such a nice feeling when he said that (No 14).
I got a bit of hope when the nurses said he was going to have physiotherapy. He had it twice, at least. Well, on Friday and Saturday he was on his feet, but then the treatment finished and he died on Sunday (No 8).
I felt that every new day when I arrived I was looking for some positive news and they wanted to tell me something positive (No 19).
Disparate comprehension
I remember the doctor said: "Then we’ll continue". Everything had been going well. "We’ll continue with the present medication. And see how things go until after the weekend" (No 9).
But we hadn’t been told that they were winding down. No, because they kept trying something new. In fact, right until the day ……they turned off the machine, you might say (No 11).
That was in a call I got on Friday and they were going to wait and see and do a new assessment on Monday, because they were having a joint meeting in the morning (No 13).
But the worst thing was ….I can remember it as if it was yesterday, a doctor from intensive care rang to say they’d had a meeting and agreed there was nothing more they could do for him. I protested and said ”You promised me you wouldn’t switch off. He’s on a breathing machine and on dialysis, and you said before the weekend that he could be on them for a long time (No 10).
Delayed communication
Then I was told they would stop the treatment. What I thought about it wasn’t an issue, or what my husband would have wanted. It was… but if I’d reacted differently ….maybe they’d have put it off a bit longer… I don’t know. Well, I could have just broken down, begged them not to stop it, for example,… but I just accepted it quietly (No 1).
The only communication with doctors was on the last day. They summoned us, and the heart surgeon was there too, the one who did the operation, and they informed us that they’d stop the treatment (No 8).
I’ve been thinking that maybe we must begin to understand that death is a natural thing, and maybe be a bit more prepared to talk about things beforehand. My mother and I hadn’t done this. And the doctors and nurses didn’t bring up the subject either until the final talk (No 18).
On Monday they decided to wait and see until Wednesday, and then they rang us in the afternoon. We had to leave the same night, because it was to happen the next day. I thought that….was too soon (No 16).
What happened was that a doctor rang us on Monday and said they’d decided to stop it. I don’t know if we could have said that we …that we didn’t want that. I don’t think there would have been any point (No 4).
Shared decision-making
They did in some strange way….put the words into our mouths. They wanted it to come from us, not from them. They didn’t take the decision for us …but it seemed more natural. It was said in a nice way(no 3).
They removed the dialysis and then I understood. But they didn’t inform me that they intended to stop the treatment and I didn’t ask. However, the next day they discussed it with me. I definitely felt involved in the decision, and I’ve thought a lot about it afterwards (no 9).
We felt responsible for the decision. It was quite tough …having this feeling, but we felt that it was right, cooperating with the staff. So the responsibility wasn’t a burden in a negative sense. It was a responsibility we could live with (no 20).
The doctor said it in such a strange way, so I wouldn’t have to say yes or no. So….I’ve thought a lot about it since. It was really nice. But he was actually asking me….and when he’d said this, he listened and waited….to see any reaction from me and my daughter (no 18).
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