Dutch guidelines on care for extremely premature infants: Navigating between personalisation and standardization

Verweij, E. J.; Proost, Lien De; Hogeveen, Marije; Verhagen, Eduard; Geurtzen, Rosa

doi:10.1016/j.semperi.2021.151532

Cited by 7 publications

(28 citation statements)

References 32 publications

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“…The current study presents data on neurodevelopmental outcome after preterm birth that can be used for prenatal counselling of parents. However, it is of great importance to adjust the counselling by taking into consideration the parental values and ideas about quality of life 29 30. As such, the National Institute of Child Health in the UK advises to ‘individualise the information to be provided, based on family preferences, wants and needs’ 31.…”

Section: Discussionmentioning

confidence: 99%

Two-year neurodevelopmental outcome in children born extremely preterm: the EPI-DAF study

Beek

Rijken

Broeders

et al. 2022

Arch Dis Child Fetal Neonatal Ed

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ObjectiveIn 2010, the Dutch practice regarding initiation of active treatment in extremely preterm infants was lowered from 25 completed weeks’ to 24 completed weeks’ gestation. The nationwide Extremely Preterm Infants – Dutch Analysis on Follow-up Study was set up to provide up-to-date data on neurodevelopmental outcome at 2 years’ corrected age (CA) after this guideline change.Design: National cohort study.PatientsAll live born infants between 240/7 weeks’ and 266/7 weeks’ gestational age who were 2 years’ CA in 2018–2020.Main outcome measureImpairment at 2 years’ CA, based on cognitive score (Bayley-III-NL), neurological examination and neurosensory function.Results651 of 991 live born infants (66%) survived to 2 years’ CA, with data available for 554 (85%). Overall, 62% had no impairment, 29% mild impairment and 9% moderate-to-severe impairment (further defined as neurodevelopmental impairment, NDI). The percentage of survivors with NDI was comparable for infants born at 24 weeks’, 25 weeks’ and 26 weeks’ gestation. After multivariable analysis, severe brain injury and low maternal education were associated with higher odds on NDI. NDI-free survival was 48%, 67% and 75% in neonatal intensive care unit (NICU)-admitted infants at 24, 25 and 26 weeks’ gestation, respectively.ConclusionsLowering the threshold has not been accompanied by a large increase in moderate-to-severely impaired infants. Among live-born and NICU-admitted infants, an increase in NDI-free survival was observed from 24 weeks’ to 26 weeks’ gestation. This description of a national cohort with high follow-up rates gives an accurate description of the range of outcomes that may occur after extremely preterm birth.

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Section: Discussionmentioning

confidence: 99%

Two-year neurodevelopmental outcome in children born extremely preterm: the EPI-DAF study

Beek

Rijken

Broeders

et al. 2022

Arch Dis Child Fetal Neonatal Ed

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“…The nal resuscitation or treatment decision may be in contrast to the current guidelines. This is the case of Netherlands and Canada [13,17]. Wood et al showed evidence of moral distress in Canadian neonatologists even when treating newborns with gestational age less than the guidelines-based resuscitation threshold, that is, GA > 25 weeks [13].…”

Section: Wilkinson Et Al Found Relatively Narrow Range Of Different N...mentioning

confidence: 99%

“…Gestation age-based guidelines for providing care for EPIs do not discuss the role of emotions [23]. Verweij et al found that "the GA-based-plus guideline which advises to take into account other prognostic factors than just GA is mostly preferred" [17]. It is argued that decisions should be individualized / personalized [15,17].…”

Section: Wilkinson Et Al Found Relatively Narrow Range Of Different N...mentioning

confidence: 99%

“…Verweij et al found that "the GA-based-plus guideline which advises to take into account other prognostic factors than just GA is mostly preferred" [17]. It is argued that decisions should be individualized / personalized [15,17]. Individualization / personalization of care at the limit of viability should be considered independent of guidelines [17].…”

Section: Wilkinson Et Al Found Relatively Narrow Range Of Different N...mentioning

confidence: 99%

“…Uncertainty is a key contextual factor that signi cantly affects the decision making. Furthermore, there are no "best available evidence"-informed guidelines or the existing guidelines are inadequate to address the neonatologists' needs [8,13,[15][16][17].…”

Section: Introductionmentioning

confidence: 99%

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Moral distress in neonatologists working in neonatal intensive care units in Greece: A qualitative study

Deligianni

Voultsos

Tzitiridou‐Chatzopoulou

et al. 2022

Preprint

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Background Working as neonatologist in the neonatal intensive care unit (NICU) is stressful and involves ethically challenging situations. Neonatologists’ periviable resuscitation or medical futility decisions involve an attempt to determine the infant’s best interest and strike a balance between infant’s best interest and respect for parents' autonomy. This may cause neonatologists to develop high levels of moral distress, especially when caring for extremely premature infants (EPIs) under high levels of prognostic uncertainty and without guidelines. In Greece, few qualitative studies are focusing primarily on neonatologists and provide little insight into how neonatologists working in the NICU make or perceive their decisions. Moral distress among neonatologists working in the NICU is a topic that is still understudied and warrants further exploration. Methods This was a prospective qualitative study that used semistructured interviews of twenty neonatologists who had been working in NICUs in Greece for at least one year. The study was conducted between March 2022 and August 2022. A thematic analysis of the data was performed. Results A variety of distinct themes and subthemes emerged from the interview data analysis. Neonatologists are confronted with moral conflicts perceived as irreconcilable. Furthermore, they prioritize their traditional (Hippocratic) role as healers. Importantly, neonatologists seek out a third-party support for their decisions to reduce their decision uncertainty. In addition, from the interview data analysis emerged multiple predisposing factors that further increase the neonatologists’ uncertainty distress or let it continue elevated, as well as multiple predisposing factors that may be associated with either neonatologists’ constraint distress or their uncertainty distress. Among the predisposing factors that further increase the neonatologists’ uncertainty distress or let it continue elevated have been identified, the lack of neonatologist’s previous experience, the lack of clear and adequate clinical practice guidelines / recommendations/ protocols, the shortage of healthcare resources, the fact that in the context of neonatology best interest and quality of life are determined with difficulty, the administration of an off-label medication and the need for making decisions in a short time frame. NICU directors, neonatologists’ colleagues working in the same NICU and parental wishes and attitudes have been identified as predisposing factors that may be associated with either neonatologists’ constraint or their uncertainty distress. Ultimately, neonatologists become more resistant to moral distress over time Conclusions We concluded that neonatologists’ moral distress should be conceptualized in the broad sense of the term and is strictly associated with multiple predisposing factors. It is greatly affected by interpersonal relationships. A variety of distinct themes and subthemes were identified, which, for the most part, were consistent with prior literature. However, we identified some nuances that are of practical importance. The results of this study support the need for establishing Institutional Ethics Committees in every healthcare setting and make neonatologist aware of them. Furthermore, the results of this study support the need to make professional psychological counselling available in every NICU. Ultimately, the results of this study may serve as a starting point for future research.

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Debate: Should Parents Should Be Able to Request Non-Resuscitation for All Extremely Premature Newborn Infants?

Wilkinson,

Savulescu

2024

ABR

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Infants who are born extremely prematurely can survive if they receive intensive medical treatment. However, they also have a high chance of dying, and a proportion of survivors have long-term health problems and disabilities. In many parts of the world, if parents request it, an extremely premature infant can receive palliative care rather than active survival-focused care at birth. But there are variations between countries as to whether or when this is permitted. To help inform ethical debates across Asia and more widely, we present two contrasting views about parental discretion and the treatment of extremely preterm infants. In questions of this nature, disagreement and dissensus are inevitable. Differences in the outcomes of treatment, the resources available, and the values of society mean that we should not expect a uniform approach. We identify points of potential consensus and compromise despite disagreement.

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Dutch guidelines on care for extremely premature infants: Navigating between personalisation and standardization

Cited by 7 publications

References 32 publications

Two-year neurodevelopmental outcome in children born extremely preterm: the EPI-DAF study

Two-year neurodevelopmental outcome in children born extremely preterm: the EPI-DAF study

Moral distress in neonatologists working in neonatal intensive care units in Greece: A qualitative study

Debate: Should Parents Should Be Able to Request Non-Resuscitation for All Extremely Premature Newborn Infants?

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