Table 3 Overarching themes

Donation request seen by relatives

MD m 52

1

The decision ‘Yes, I’ll do it’ is generally more carefully considered [than a refusal (addition JG)]. Also now, when we have to decide in advance, you take more time to think about a ‘yes-decision.

RN m 43

2

I also notice that actually the question ‘Why not?’ is never really discussed in more detail. What are really the weighty arguments not to do it? And nine, even ten out of ten times the conversation is finished then.

TC f 49

3

No, the only regret that you hear occasionally is: ’If I had known this, that it would take so much time, that so many things needed to be arranged, I probably would not have done it’.

MD m 57

4

That is what you frequently hear from parents: ‘Our child could not be saved, but he can save other children or other adults.’ It provides a kind of comfort for those people. There is an aspect of comfort included’.

TC f 47

5

Whereas, and this is how I always explain it to our doctors and then I always say…, you should not give a point in time at all. Just say: ‘Take your time and think about it’.

TC f 47

6

That is a bit of a slogan of mine, which also, indeed, means the right information at the right moment, which also means well-informed and well-balanced. Sometimes you have to repeat it all, because the information has not yet sunk in, which is of course understandable; these people are in an acute and stressful situation and are perhaps not able to fully take in all this information.

MD m 52

7

I think the most difficult thing is to find a balance, especially in an acute situation, between the care and the relatives’ grief and your own feeling of the best care you want to give this family. You need to gather all your emotions to make such a sudden death bearable for the relatives. At the same time and completely contrasting is the importance of the organ, needing to be preserved. That is for me the most difficult thing, because what you would rather do is concentrate on one thing, namely guiding the relatives in such a terrible period. That is difficult.

TC f 47

8

Something that I also find very important, which is also a bit like stating the obvious, that there is someone present who is capable of giving optimal guidance, also with respect to time.

Donation request seen by ICU staff

MD m 52

9

It makes a great difference whether they have had the opportunity to build up a bond of trust with the relatives, because that makes the conversation a much easier one. I immediately admit that if you are confronted with a family for whom this has suddenly happened, and you do not know them, I think it is still one of the most difficult conversations to have.

MD m 34

10

What happens sometimes is that you go for the heart-beating procedure, but it takes too much time to complete the brain-death-protocol, which leads you to say: there is a second option, let us stop this now. In other words you stop the treatment, not for the patient himself, but to go for the non-heart-beating procedure.

MD m 58

11

I think it would be a good thing to train people’s communication skills. That would do a great deal of good. I have had to make my own way in this, and I do feel that I have succeeded, but I also think that this is difficult for younger colleagues.

TC m 50

12

These are funny things you hear afterwards: ‘We already knew how bad the situation was and we have already been thinking about it’. Especially with parents it is incredible to see how they are able to empathise with parents of other seriously ill children, who are waiting for a transplantation. These parents feel that if their child could save another child, that would be wonderful. To be able to set aside their own grief and go to the doctor or nurse with that in mind and say: ’Well, if we can be of any help by giving consent, we will do that’. And no one has even brought up that question yet.

TC f 49

13

You should not victimise the people who are left behind. We tend to exaggerate sometimes, the donation request is terribly difficult and if you say ‘yes’ or ‘no’, it is so hard….. Mourning is normal, losing someone and mourning their loss is normal, I think. You can cause damage with a donation request, if you do it in a tactless way or the request is rather wrongly timed, in so far as you can time such a thing, but that is what I think.

MD f 42

14

If the family says ‘no’, while the patient has consented, that is an extraordinarily inconvenient situation, especially because the family is very vulnerable and for that reason I would not dare to put more pressure on them.

TC m 50

15

I am a transplant coordinator, although I feel that I am a donation coordinator. I am there for the relatives, for the donor, and for the ICU staff too. I am there to assist all of these people in their weighty task by guiding them through this procedure. That is my intention, yes. Obviously I sympathise very much with all of the people who are on the waiting list for organ transplantation, and I hope that they will receive an organ of good quality.

TC f 47

16

I always say…try to find out why they cannot accept the patient’s will. Sometimes it can be just a tiny thing, often fear, which is not to say that that is a small thing but it can be something that can be solved… through proper counselling. Or sometimes it is something else…, ‘not the heart, but the rest is alright’. So it is as if you are striking a bargain, as you just said. Yes that sounds very familiar.

MD m 33

17

You tend to give priority to the emotions of the relatives rather than to the will of the patient…..

MD m 57

You are afraid of having a difficult conversation, you are the doctor, right? Because then you feel you have to act like some sort of body snatcher, trying to coax the organs out of the body.

RN f 32

18

I had been registered from the age of eighteen. But since I learned about the length of the procedure, I would rather let my family decide about it, because I think it will create a heavy burden for them.

Aftercare

RN f 41

19

If you ask them whether they feel regret, what would people have wanted otherwise, well, that bit you do not know about.

MD m 50

20

You often know whether a request was made, but that is it. If it is ‘yes’, they always get a message from the transplant coordinator and often a meeting, and if it is ‘no’ then it is no and we do not follow up on it.

TC f 47

21

But if you said ‘no’, and you have a meeting afterwards with your doctor, especially if you regret your decision, that makes it even harder to talk about the subject.

Organ donation in society

MD f 37

22

Now at least we know that this is not actually working very well. Our system….

MD m 52

In Belgium the system is such that you really need to think about it. Because you have to come to a decision and that decision will be carried out.

MD m 58

23

I am there for the patient. So my point is….. the patient has in fact signed a testament, that’s how I communicate it to the relatives.

RN f 34

24

I once had a conversation with relatives who said…, I just feel that they are kind of shopping with organs, with all that media coverage……. I feel that it is difficult to try and prevent that.