Background
Methods
Methodology | Include empirical studies. Both quantitative and qualitative studies – surveys, in-depth interviews, questionnaires, etc. |
Issue | Limit of viability, threshold of viability, border of viability, children born at 22 to 25 week of gestation, extremely preterm birth, gestational age 22 + 0 to 25 + 6, end of life treatment, “best practice”/“good practice” models of decision-making, social factors, ethics, ethical/moral challenges/dilemmas |
Participants | parents, doctors (physicians), ethical council, ethical committee |
Setting | Neo-natal intensive care units (NICU) |
Publication period | 1990–2017 |
Languages | German/English |
Systematic literature search
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Medline via Ovid
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Embase
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The Cochrane Library
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CRD (DARE, NHS-EED, HTA)
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PsychInfo
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CINAHL
Interviews
Overall theme | Code | Sub code | Coding example |
---|---|---|---|
Decision-making | Decision models | Guidelines | “we follow the guidelines ... of the ÖGKJ, uh and uh ... we treat routine- really routinely at 24 + 0, so there’s no question about that if we treat it or not” (Interviewee 4) |
Grey zone | “we really try to implement this, this uh new guideline from ... in Austria, yeah. We recognise that in in comparison to the the ... so the guideline in Switzerland and in Germany uh it’s so ... there is a wider uhm ... space ... for for decision making. And and therefore w-we we think we have to offer really a process of uh uh, consultation, counselling in that process. If the mother wants, yeah.” (Interviewee 6) | ||
Psychological support | “the SOP would be that ideally the mother and the father have ... a counselling talk before birth, with the pediatrician and a psychologist. Or let’s say neonatologist and plus psychologist ... it’s not necessarily that both together talk to them, because this is, a resource problem, but both groups have to talk to them, yes. This is the ideal situation.” (Interviewee 1) | ||
Ethics committee | “yeah, we do have, they come together immediately if you need this committee and if. ... the nurses are in this committee, there are people from people different wards who don’t have to do anything with, with the patients, we are in psychologist and so they canmeet immediately and you have a a written m paper afterwards m regarding the discussion and also the decision ...” (Interviewee 2) | ||
Communication with parents | Individualized | “regarding treatment, it’s mostly it’s possible, or always, nearly always to ... work... together with the parents. If you talk to them, if you have enough time for them, if you try to understand them, I think you won’t have a problem, regarding this question.” (Interviewee 2) | |
Paternalism | “we sometimes really have to fall back and make a paternalistic decision.” (Interviewee 5) | ||
Ethical challenges | Context | Cultural-religious context | “nowadays I think or for me is a-, it’s a challenge that we have so many different cultures. ... and ... or we ... maybe ... don’t understand every religious aspect that’s going on in the parents.” (Interviewee 2) |
Social context (typology of parents and guidelines) | “So it’s a language problem, and if you look at the immigrants of the last years, it’s not only language, but it’s a s-social situation, they they don’t, they are not really able to imagine the situation (at NICU) ...” (Interviewee 1) | ||
Legal context | “yes it was a challenge before the ethic commission was established. Now we have uh uh a judge in the commission and uh also uh with Medizinrecht, also, uh medical ...” Interviewee 3) | ||
Obvious question | Uncertainty (vigorousness assessment) | “sometimes you are not even sure, i-if is it ih, a 23 weeker, or is it a 24 weeker for instance” (Interviewee 2) | |
Tragic question | Best interest | “If it were easy to know what the best interest of the child is, we would not need to discuss it”. (Interviewee 5) | |
Moral distress | “nurses sometimes want to stop therapy. Because of futility and futility is a very difficult thing.” (Interviewee 1) | ||
Professional virtues | “They must have the feeling for the very small and we ... the very ... tiny and and ... also ill babies. So, it’s a, it’s a kind of ... of ‘I like this’. So, at my ... my, my I – I ha- started my trai- aso my training o-on the NICU. First day on the NICU and I went into the NICU and i said ‘Okay, that’s it’.” (Interviewee 3) |
Results: communication with parents - biases influencing outcomes
Professional biases
Institutional bias
Country | Year | Weeks of gestation | |||
---|---|---|---|---|---|
22 | 23 | 24 | 25 | ||
Argentina | 2012 | CC | NR | NR | NR |
Australia | 2006 | CC | CC | AC | AC |
Australia | 2013 | CC | PW | PW | AC |
Austria (Updated according to Austrian GL) [15] | 2017 | CC | PW | AC | AC |
Belgium | 2014 | CC | CC | PW | PW |
Canada | 2012 | CC | IND | IND | AC |
Finland | 2014 | IND | IND | AC | AC |
France | 2010 | CC | CC | PW | AC |
Germany (Updated according to German GL) [16] | 2014 | IND | PW | AC | AC |
FIGO, international association | 2006 | NR | NR | NR | NR |
ILCOR, international association | 2006 | CC | NR | NR | NR |
WAPM, international association | 2010 | CC | IND | AC | AC |
European Resuscitation Council | 2010 | CC | PW | PW | AC |
Ireland | 2006 | CC | CC | PW | PW |
Italy | 2008 | IND | IND | IND | IND |
Japan | 2012 | NR | NR | NR | NR |
Dutch Paediatric Society, the Netherlands | 2006 | CC | CC | IND | AC |
Dutch Ministry of Health, the Netherlands | 2010 | NR | NR | AC | AC |
New Zealand | 2011 | NR | NR | NR | NR |
Poland | 2011 | CC | CC | IND | AC |
Portugal | 2012 | CC | CC | AC | AC |
Singapore | 1998 | IND | IND | IND | AC |
Spain | 2004 | CC | NR | NR | NR |
Sweden | 2004 | CC | IND | IND | AC |
Switzerland (Updated according to Swiss GL) [17] | 2011 | CC | CC | PW | AC |
Nuffield Council, United Kingdom | 2006 | CC | PW | AC | AC |
BAPM, United Kingdom | 2009 | CC | CC | AC | AC |
Royal College of Obstetricians and Gynaecologists, United Kingdom | 2014 | CC | IND | IND | AC |
AAP, United States | 2009 | IND | IND | IND | IND |
ACOG, United States | 2012 | IND | IND | IND | IND |
AHA, United States | 2010 | CC | PW | PW | AC |
Joint Workshop, United States | 2014 | CC | IND | AC | AC |
“they are really more conservative… I remember we had a Swiss couple travelling through who did not want to deliver their baby here, but then she had a premature rapture of membranes at 23 weeks plus something…and for her, it was completely normal not to go for this baby. Then we talked a lot with this family and at the end, we convinced them to actively go for this baby and they had a wonderful outcome.”
Personal bias
Informational bias
“if the 23 weeker doesn’t have any vital signs (and the parents don’t want us to do, really everything), comfort care comes in ... the baby shows what to do.” (Interviewee 2)
“…with our obstetricians…normally, we know very well the exact date of birth because most of our NICU patients have a very early ultrasound…So, normally, we have very good data there.”
Parental understanding
“I think it’s a real big problem because in this week, the parents must say ‘yes’ or ‘no’ and they must live with this decision.”
“I’m very strongly emphasising this for all our working groups in the NICU that we always have to be in accordance with the parents. If we lose the parents, we lose the infant somehow as well.”
“…we sometimes really have to fall back and make a paternalistic decision.”
“We need to develop a sense of who these parents are in order to ensure effective communication for both sides.” (Interviewee 5)
“If you talk to them, if you have enough time for them, if you try to understand them, I think you won’t have a problem...We answer their questions, we talk about outcome, about survival, about major handicaps, we also talk about what will happen if the baby will come during the next days. If possible, we show them the neonatal intensive care unit...we describe what will happen, that the baby will need respiratory support, tube feeding, central venous line, and so on, and so on…”
Real life data and psychological support
Information-giving and choice biases
“parents get an idea of the medical data as well as an idea of what the NICU team thinks is worth-while doing (not with regards to resources and money, but in the interest of the EP infant and the family).”
Cognitive biases | The possible influence of the bias on the communication between NICU professionals and parents |
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Anchoring effect: tendency to rely on the first piece of information received (the anchor). This piece of information is used to make subsequent judgments. | Speaking about risks before benefits may create a negative anchor on parents’ perception. |
Focusing effect: placing too much importance on one aspect of the situation that falsifies the prediction of a future outcome. | Speaking about all possible disabilities an EP infant may have for a lengthy period and not speaking about the likely abilities. |
Availability effect: estimation of a probability of an event that is associated with vivid memories of similar events happening before. | If doctors tell the parents that their child is going to die three times, but it survives nonetheless, parents overestimate the chances for survival in case of another event. |
Effective forecasting: individuals often predict the future health states inaccurately. Individuals tend to be more resilient than they predict. | Parents may find it difficult to imagine living with a disabled child, but manage it better than they anticipated nonetheless. |
Loss aversion: tendency to strongly prefer avoiding losses to acquiring gains (the loss of 100 EURO causes more loss of satisfaction that the satisfaction gained from winning 100 EURO). | Framing the information via losses and gains may have an impact on parents, i.e., losing a child vs getting a child. |
Framing effect
“,,,we always discuss with parents, of course, which is difficult if you are confronted with families who do not have the cultural, religious, or intellectual basis to decide. We still discuss it with them. We have a Videodolmetsch system where we at least try to show those parents, or pregnant women, what the odds of complications and NDIs are. But normally, it is like “Please do everything for our baby”.” (Interviewee 5)