Table 3 Quotations divided in categories– with indication of type of participant
Q no | No resp | typea | |
|---|---|---|---|
Request factors | |||
1 | R24 | F | R24. We cannot handle this right now. And maybe the way they put it, so soon after communicating that ‘there is no cure anymore’. Maybe that too… My mother had not yet recovered from… |
2 | R25 | B | R25. That came right on top of it: “he does not have a codicil.” Well, all in the one sentence I think it was. That is why I say, I really feel bad about it. It is like; let us go to him for a moment first. |
3 | R33 | A | R33. And then we got [the question] in the corridor: “what do you want?” And, really, no more information at all after that. |
Behaviour of care professionals | |||
4 | R23/R24 | F | R23. It is just, I have a bad feeling about the intensivist that we were dealing with. I think she was a real cool and cold lady and she… R24. She was hardly humane. Just a medical… |
5 | R31/R30 | D | R31. I think it also matters who delivers it [the death notice]. We just had… R30. A very kind doctor. R31. A very good one and she was really nice too. She told us in a gentle way, very nicely, but very clearly. Well, there was no doubt about it. |
6 | R27 (letter) | B | R27. That Monday was a very difficult day, and it is still awfully hard. The way we were treated at the hospital contributed to that. The fact that I was very afraid that Dad might still be able to hear something or be able to think, but could not move his body, was immediately cut short by the doctors and was considered rather ridiculous. …but it was my father lying there on that bed! We had to say goodbye to him in the end. Of course, I wanted him to have as little pain as possible, but because of the ambiguous, ‘cold’ and ‘ridiculing’ reaction I still wonder whether he really did have as little pain as possible. |
7 | R25 | B | R25. Well, perhaps then, we would have made a few different choices. Because the doctor made his announcement and then ‘whoosh’, he was gone again. ‘You can take your time thinking about it, I will be with you in a minute.’ Then another doctor appeared, and yet another. You hardly knew who they all were. |
8 | R41 | B | R41. So then in the end we said….well…They discussed it with their two children and her ex-husband and I discussed it with the doctors about whether we should give consent or not. They did try to persuade us a little bit, saying that it was a way of helping other people and all that, but actually the children and the husband were really very much against it, so that is what I told them. |
9 | R25 | B | R25. [They said]: “He does not have a codicil,… but we can use all the parts of his body.” At one point I said, “Well, not his lungs surely, since they must be completely black from smoking,”. To which, they replied: “Well, that is rather silly madam, because we can even use those.” So I was thinking “Snatch it all away!” That was really how it felt like then. |
10 | R34 | A | I think that at that moment she said to me, we can make a young man of 20 very happy with his heart; I think that she perhaps would have listened… |
11 | R08 | C | R08. Well, then his parents arrived. They were here for three days, and then his brothers arrived. I asked the hospital whether a team of doctors could be present when I arrived with the parents. I wanted the parents to be well- informed, so that they would finally understand that things were not going well. Because his father said: “Look, my son will pull through. Next year you will be with us on our holidays.” And I thought: “That is not going to happen.” Yeah, well, I suppose losing a child is worse. Because a child leaves your heart, and a husband leaves your side, you know. They did not want to understand. |
12 | R20 | F | R20. Then everybody was very angry: ‘This really can’t be happening!’ We had just arrived at the hospital. They said: “Three days, and then we‘ll see”. And now, all of a sudden, the treatment stopped. She is going to die. She is just going to die. I am thinking: “This cannot be happening. My little girl cannot die!” |
13 | R25 | B | R25. We had to ask [the doctors] ourselves if we could take a look at the scan. Because you just cannot believe it. I thought: “He is lying there. It is just like he is lying asleep on the couch at home. He looks completely normal.” Just let me see that scan, we only wanted something… |
14 | R41/R42 | B | R41. Yeah, at that moment you are overwhelmed with grief, gosh, she really has died. My parents had not yet realised that she had died. I told them then… that this means… {Interviewer: in fact, she is already dead} R41. That she is actually already dead. “No,” my father said, “She is still breathing.” “But Dad, [she is] not [breathing] herself anymore. “Yeah, yeah, yeah” [acts like her father, hesitant, unsure] {Interviewer: people do not get that; you do not get that…} R41. [acting like father] “And she is still warm. And she is still warm and still breathing. No, she is not dead yet,” I said: “But she certainly is brain-dead.” “No, her heart is still beating, she is not dead yet.” So… R 42. [He is] 77 years old. R41. 77 years old, so yeah, he did not really comprehend it. |
Prior knowledge and opinions | |||
15 | R08 | C | R08. That is what we thought. Just imagine that you have something like that [organ failure] yourself and you have been waiting several years for it [an organ]. Can you imagine how happy you would be to receive a kidney, for example? (…) More arguments? Yes. He also had a friend who had been on dialysis for several years, waiting for a kidney. |
16 | R30 | D | R30. That was really important for me: that none of us would have trouble with it afterwards. Because if one of us would have said: “Mom, I have a problem with that”, then I would not have done it. No, because I think that is really important, since the four of us have to live with it. Yeah, that was really important to me. |
17 | R31 | D | R31. He [deceased] always said…: “Dead is dead. When I am dead they can have all of my body. But I will leave you to decide on that, since you are the ones who will have to deal with all the hassle.” |
Relatives’ decision making | |||
18 | R20 | F | R20. And the moment as well: you are really in shock. First you had a healthy child, and your baby was always around, and she lived and was hardly ever ill. And all at once you are in a situation where everything is so difficult to comprehend, it is in fact incomprehensible. And then you have to make such a choice too. Then that [choice] is easily made actually, since you quickly say: “No, we will not do it.” Then you do not have to mull over it any more. You can go on with what you were doing: being with her [daughter]. |
19 | R41/42 | B | R41. Her ex-husband had fewer problems with it, but the children did not want it [donation] in the end. So then I said’Well, let them decide. We will not do it.’ R42. Though we do think it is a pity. R41. Though we do think it is too bad. |
20 | R31 | D | R31. I wanted to be sure. I wanted to see him die. I just could not believe what was happening, and I think that if he had gone to surgery alive, well… Yeah, well, alive for us I mean. I think that would not have been… |
Evaluation of decision (process) | |||
21 | R21 | F | R21. If we had been prepared a bit, it would have been totally different. It would have been a completely different story. You start thinking about it and talking about it with each other. So your circle of people gets bigger when you have to make a decision. |
22 | R32 | F | R32. But if that person [doctor] had said… Well, you know, when the doctors say like… well, it is kind of a cold process. You donate a heart and then… He goes cold, uh, warm into the OR and comes back cold. That could also be told in a different way. In a way with more room for alleviating circumstances. (…) Such nuances do make a difference, I think. Maybe I would have said then, well, take his kidneys, yeah, uh… |
23 | R41 | B | R41. Yes, and then I am right in the middle of it [the family who had to make a decision]. I managed it all right. I organised everything and all, but yes [the family was flabbergasted]. But I did ask for help at one point, and I did not get it. |