Table 3 Uncertainty
Uncertainty | Illustrative Quotes |
|---|---|
Diagnostic uncertainty | Neonatologist A: And there the statement of Neonatology [and the paediatric Pneumology and Neuropediatrics] is absolutely clear that the genetic diagnostic confirmation is really needed. Neonatologist B: Mhm Neonatologist A: Yes. Because else there is…That is the only diagnostic test that gives us sufficient certainty in a situation like that. (…) Father: I see… (sigh) indeed, just when one would assume the situation will not improve, we have now discussed yesterday and the day before, a resuscitation order. Neonatologist A: Mhm Father: And for me it was more or less always clear that I don’t want [the child] to be mechanically resuscitated and today my wife and I have also discussed that we do not wish for intubation or drug resuscitation either, simply because we do not feel it is something [the child] will recover from. Neonatologist A: Mhm, yes. Father: So given the underlying medical situation, which we would like to address once more, as often you come so close to the point, where you think, ‘oh my god oh my god’, but we don’t want [the child’s] ribs to be fractured as well. Neonatologist A: Mhm, yes. I have to say… from our perspective it is really difficult, as long as we do not know what [the child] has, as we are not a 100% certain that it is something [the child] could not improve from, and as long as the diagnosis is not determined, uhm, it’s what we in agreement have discussed, that at the moment from our point of view, we continue in a curative way. That means also to intubate the child if that is deemed necessary. I would not assume it is necessary…but I do know it is… Father: But if it came to that, it would really distress us Neonatologist A: Mhm Father: I have to say. (Case 8, conversation 1) |
Uncertain short-term prognosis | Neonatologist: Since we do not directly have our backs up against the wall, we do not have to say: if one more thing arises, we have no options anymore. And in case of [name of neonate], [the child] has now been treated. We don’t know yet exactly what it is, but [the child] is considerably extensively treated with antibiotic. Here I would also not say we are having our backs up against the wall. (Case 5) |
Uncertain long-term prognosis | Neonatologist: It would be for the time being and to be discussed by us again later. But how we assess it right now, at least on the long-term, is that the chance is still there that [the child] can still develop well, but of course there is also the risk that [the child] does not. However, at the moment for us the risk does not outweigh. Right now, we would not say it is more likely [the child] develops poorly rather than [the child] still has a chance to develop well, despite his condition. (Case 4, conversation 1) |