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Table 4 Illustrative quotes: Strategies to deal with ethical challenges

From: Neonatologists’ decision-making for resuscitation and non-resuscitation of extremely preterm infants: ethical principles, challenges, and strategies—a qualitative study

Setting limits

 

“Afterward, we asked ourselves “was it right to resuscitate or not? We should have been maybe more strict with the parents considering that we have seen the technical difficulties and we were a little bit concerned that was it acharnement or not?” So there was a little bit of discussion about it but finally, especially seen the fact that for the parents was very very important as well to at least try to do something. And at the same time we still put some limits. For example we won’t intubate, perfusion, we won’t go to for example giving cardiotropic drugs. So finally after discussing it all together we consider that it was very tough for us but not necessarily a bad decision. Especially that particular situation: not having the whole information, not really the whole proof about the medical information, not having the time to waiting for the baby. So it was a complicate situation, but considering all the limits there were, maybe it was the good choice to do.” (PART. 3)

 

“Int. the whole team agreed to take care of the baby, why?

 

Part. because the parents clearly told us their opinion. They really wanted to try. They knew the risks and it was just one day before 24 weeks. I don’t like the expression” precious pregnancy” but they have gone through so many dramatic situations and the parents knew that it could have been difficult for the baby but they really wanted us to do everything we could do. We told the parents “we can try, but if it’s too heavy for the baby, if it’s too difficult, if he is too much premature we will stop resuscitation, we will stop intensive care.” (PART. 12)

 

“Int. and in the case in which the baby would survive majorly impaired, if the parents want resuscitation would you provide it?

 

Part. we can do that yeah. But sometime there is no time to discuss with the parents and then you do but you also keep in mind what is good for the baby so there will be limits. If we have to give thorax compression and adrenaline and the baby is not responding I would be the first and very quick to say: it doesn’t work I’m sorry but your baby is not going to survive”. Sometime you have to do something just to give the parents the feeling that we gave the baby really a chance.” (PART. 15)

Trial of treatment

 

“Stabilizing a baby after birth and then making a decision based on the first 2/3 days of life… I don’t think it’s fundamentally different, I just think we have more elements to make a more wise decision […] Deciding to let him die or accompany him or her to die in a painless way 1 h after birth or 3 h after birth it doesn’t make any difference. I mean philosophically speaking I don’t see a difference. Instead I personally feel more comfortable if I verify that there are things that are compromise his survival anyway versus not. I think this really makes a difference because if he really has a brain hemorrhage I feel much more positive I feel like I make a decision based on facts rather than on speculation because the gestational age number is a bit of speculation whereas brain hemorrhage in your head is a fact.” (PART. 16)

 

“(Explaining why she prefers trial of treatment than withholding treatment) [withdrawal] It’s better I think, but it’s harder for us as humans. But it’s better for the parents and they really know we did everything but it was impossible. Otherwise they will have questions “what if the baby would have had all the chances?! Would it be different? Maybe we would have had a healthy baby?” and then they start thinking at that later maybe? But then they really know how it was and they could decide. The parents have a big decision ere- with good advice, medical advice- but eventually the parents decide.” (PART. 18)

 

“(Referring to a case in which initially parents disagreed on whether to start treatment. I asked what if parents did not solve their disagreements) I think I would give active treatment. With all the clear explanation also that if there are huge problems afterward we are not going to do absurd things. It must be reasonable. If we see that the baby will have severe complication, that will have severe handicap after in life we will have to discuss again and maybe then for the mother it would have to turned. But when there is doubt I think, I don’t know if it’s right in English, but we have to give the advantage of the doubt.” (PART. 5)