Table 3 Illustrative quotes: Ethical challenges

Conflict between EPIs’ best interest and respect for parents’ autonomy

“It was very hard for us to perform resuscitation because we could see how our lack of possibilities. But on the other hand, for the father especially who came here and assisted to resuscitation, it was maybe something he really needed for seeing that we really tried everything and maybe if we wouldn’t have done it, it could have stayed like it was like we didn’t fight enough. From the parents’ point of view I think it was necessary and it was probably what they needed. On the other end there was also the suffering of the fetus or newborn so that makes it more difficult for us.” (PART. 3)

“In whose interest do you need to make your decision? it’s a question that comes up here every day eh!? To do good for the parents sometime the children have to suffer. And we know that the prognosis is not good or that whether the baby will die now or in a month it will just be a month less suffering. But the parents need to live with it and they need to be at ease with it. That’s for me one of the main ethical questions: whose interest do you need to follow? Do we need to be the advocate of the child but the parents are sitting in front of you with their sorrows and their aspirations and their hopes so yeah that’s difficult.” (PART. 6)

“I had the feeling that a potentially very good baby didn’t have a chance because some people really have the idea that prematures are weak and they have handicap. Sometimes common sense is like “oaah!” If you also tell someone that you are a neonatologist they always think you’re only deliver handicapped babies but that’s not true at all! And still that is in many people ideas. And I had the idea that those parents were also people that had that idea, like a baby at 24 weeks never can be ok, but that’s not true! And there I have ethical difficulties with because they were so much convinced of their own believes that there were not always facts but yeah I cannot force them! it’s their baby! who am I?! but as a doctor that’s more difficult”. (PART. 11)

“I find it very difficult that she was refusing antenatal steroids, ok that’s her choice, but she cannot expect the day that she is delivering to change her mind! She did and so now we have lung problems! That’s very difficult. For me when you choose not to give active care and then you change it and then he is not in an optimal situation the baby is the one who suffered now because she didn’t want to give it. We wanted it, she didn’t, then she changed her mind, now he is the one who has the lungs problems. So he is the one who now has the problem he is.” (PART. 14)

Limitations of the guidelines

“If there are technical limits that make it impossible, then I have something like “ok that’s the limit, it’s a technical one”. If it’s technical for me is easier. If the limit is just a protocol, that’s more difficult

Int. and how do you deal with a protocol limit?

Part. well, that’s like the 24 weeks issue. The protocol says no below 24. If parents say “we would like you to start” and I would start, then I’d go against the protocol.” (Part. 7)

“I always agree if we are sure that the baby is not having a digniful life that we should stop. So in that way I’m not conservative I think, but to start something? I think we should start more. I think if it’s not working if the baby has big problems we can always do something to end the life anyway. So I’m not scared of trying more and I think that we should do it and we should let the parents decide. We should say from 25 weeks we should always do active care, 24 weeks. For me I just think that 26 weeks it’s too late. I don’t know if you have seen many preterm babies but there are many babies that at 25 weeks start crying and it’s hard not to do anything even for caretakers. We are professionals we are trained to help we are not trained to let die.” (Part. 14)

“ (Referring to a case in which parents refused resuscitation for 25 weeker in good condition) You’re almost convinced that these babies could survive and could have a very good life, qualitative life. So… and there’s also some anger that we have this guideline and we discuss the guideline with the parents and the parents choose for what you not expect. Then you think “why do we have this guideline?” because this guideline will work maybe for the whole group of 25 weekers but there’s much of diversity and I think these babies were much better than the median group. So it’s a little bit of frustration that you cannot do what you think it’s best for the babies.” (PART. 15)

Dealing with clinical uncertainty

“I have no arguments to say that the prognosis will be bad but I have no arguments to say that we will perfect. […] (referring to the colleagues who complained because she resuscitated an EPI of 22 weeks) If they want the perfect patient, the perfect baby that will go home, then they shouldn’t probably work in a neonatal centre. You know you need to be… as a doctor you have to accept that you’re not controlling everything. We always say that we are the defender of the child so if there is a chance of good outcome we should give that chance to the par-the child. If you want certainty you probably you shouldn’t resuscitate any of them.” (PART. 4)

“Well one thing and that’s really also an ethical issue and I think it’s a difficult issue. That we know that if we treat 23 weeker we are not so experienced with that because the numbers are very small or almost zero. We don’t know yet how to treat them. so it’s maybe kinda of an experiment you could say. And it is really different from what we are used to in 25/26 weekers, it really is! So there are unexpected things we didn’t see in other babies. It’s an evolution but it is an experiment! So you move from the limit of viability and you experience again new things. So you are learning. For instance we used to disinfect with alcohol, you cannot do that with 22 or 23 weeks they get burns. Their skin is not ready for that! So you learn and sometime yeah it is an experiment and they don’t get yet the optimal treatment, we know that! But by learning this, the babies of 24/25 weeks are treated much much better because you we learn from these babies and our treatment for these babies is getting better and better and better. And that’s really an ethical issue: should we experiment in these babies to improve the care for a little bit older babies? When we look back 10 years ago we experimented on these babies and these babies were on profit of that so we are moving this way. So that’s an issue.” (PART. 15)

“(comparing two cases) it was easier in that case because even though it was a difficult situation the possibilities of having good outcomes were not very high but were there, while in the first case we were quite sure that our

techniques and our resuscitation would not lead to good results. So in the first case we didn’t have a lot of.. we were quite sure that the probabilities of resuscitating was really really low; in the other case there was more doubt so we felt at ease to doing.” (PART. 3)