Withholding or withdrawing life-sustaining treatment in extremely low gestational age neonates

Dworetz, April R.; Natarajan, Girija; Langer, John; Kinlaw, Kathy; James, Jennifer; Bidegain, Margarita; Das, Abhik; Poindexter, Brenda B.; Bell, Edward F.; Cotten, C. Michael; Kirpalani, Haresh; Shankaran, Seetha; Stoll, Barbara J.

doi:10.1136/archdischild-2020-318855

Cited by 12 publications

(19 citation statements)

References 39 publications

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“…Our experiences are echoed in the literature which reflects a substantial subset of parents who do not opt to transition their seriously ill infant to comfort-focused care. 24,25 During course development, we created cases in which either continuing survival-focused care or transitioning to comfort-focused care would be ethically acceptable. We predetermined the parent values for each case in order to ensure that course participants would encounter both ‘parents’ whose values would most likely align with comfort-focused care and ‘parents’ whose values would align with ongoing active survival-focused management.…”

Section: Discussionmentioning

confidence: 99%

NeoTalk: Communication Skills Training for Neonatal Clinicians

Guttmann,

Meshkati,

Frydman

et al. 2023

Am J Hosp Palliat Care

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Background Despite proven benefit, pediatric subspecialists often have not been offered formal serious illness communication skills training. We sought to: 1) develop and evaluate the impact of a communication skills course, based on the VitalTalk framework, on Neonatal Intensive Care Unit (NICU) clinicians; 2) evaluate provider comfort with key serious illness communication skills and frequency of use of those skills, before and after “NeoTalk” and; 3) explore differences and similarities between adult and pediatric serious illness communication skills courses. Methods We developed a NICU specific communication skills course and surveyed course participants to evaluate comfort with key communication skills before and after course participation, and frequency of use of key skills before and 2 months after our course. Wilcoxon signed rank tests and Kruskal-Wallis tests were performed to compare participant responses across time points. Results 34 providers completed NeoTalk training. Complete pre- and post-course data was available for 29 participants. Participants reported increased comfort with skills including ‘sharing difficult news’ ( P = .018), and ‘responding to emotion’ ( P = .002). Participants did not report increased frequency in using target skills 2 months after training. Conclusions A multi-disciplinary cohort of NICU providers endorsed increased confidence in key communication skills but not increased skill application 2-months post-course completion. While a single course can successfully teach skills, additional exposure may be necessary to build new communication habits. Our experience developing NeoTalk helped elucidate some of the ways in which conversations about seriously ill infants may be different from conversations about seriously ill adults.

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Section: Discussionmentioning

confidence: 99%

NeoTalk: Communication Skills Training for Neonatal Clinicians

Guttmann,

Meshkati,

Frydman

et al. 2023

Am J Hosp Palliat Care

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“…Among infants born extremely preterm, National Institute of Child Health and Human Development Neonatal Research Network (NRN) investigators previously found that changes in the rates of many morbidities and in-hospital mortality did not differ by race or ethnicity between 2002 and 2016 . Yet redirection of care occurred more often for non-Hispanic White infants than for non-Hispanic Black infants or for Hispanic infants between 2011 and 2016 . In an overlapping NRN cohort born from 2006 to 2017, neurodevelopmental impairment (NDI) was more common in children who were exposed to maternal SDOH associated with risk or under-resourced status compared to those who were not exposed.…”

Section: Introductionmentioning

confidence: 99%

“…12 Yet redirection of care occurred more often for non-Hispanic White infants than for non-Hispanic Black infants or for Hispanic infants between 2011 and 2016. 13 In an overlapping NRN cohort 14 born from 2006 to 2017, neurodevelopmental impairment (NDI) was more common in children who were exposed to maternal SDOH associated with risk or under-resourced status compared to those who were not exposed. The purpose of the present study was to examine the occurrence of redirection of care discussions and sub-sequent actions for infants born extremely preterm within the context of four SDOH, specifically maternal educational level, insurance type, race, and ethnicity.…”

mentioning

confidence: 99%

Social Determinants of Health and Redirection of Care for Infants Born Extremely Preterm

Brumbaugh,

Bann,

Bell

et al. 2024

JAMA Pediatr

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ImportanceRedirection of care refers to withdrawal, withholding, or limiting escalation of treatment. Whether maternal social determinants of health are associated with redirection of care discussions merits understanding.ObjectiveTo examine associations between maternal social determinants of health and redirection of care discussions for infants born extremely preterm.Design, Setting, and ParticipantsThis is a retrospective analysis of a prospective cohort of infants born at less than 29 weeks’ gestation between April 2011 and December 2020 at 19 National Institute of Child Health and Human Development Neonatal Research Network centers in the US. Follow-up occurred between January 2013 and October 2023. Included infants received active treatment at birth and had mothers who identified as Black or White. Race was limited to Black and White based on service disparities between these groups and limited sample size for other races. Maternal social determinant of health exposures were education level (high school nongraduate or graduate), insurance type (public/none or private), race (Black or White), and ethnicity (Hispanic or non-Hispanic).Main Outcomes and MeasuresThe primary outcome was documented discussion about redirection of infant care. Secondary outcomes included subsequent redirection of care occurrence and, for those born at less than 27 weeks’ gestation, death and neurodevelopmental impairment at 22 to 26 months’ corrected age.ResultsOf the 15 629 infants (mean [SD] gestational age, 26 [2] weeks; 7961 [51%] male) from 13 643 mothers, 2324 (15%) had documented redirection of care discussions. In unadjusted comparisons, there was no significant difference in the percentage of infants with redirection of care discussions by race (Black, 1004/6793 [15%]; White, 1320/8836 [15%]) or ethnicity (Hispanic, 291/2105 [14%]; non-Hispanic, 2020/13 408 [15%]). However, after controlling for maternal and neonatal factors, infants whose mothers identified as Black or as Hispanic were less likely to have documented redirection of care discussions than infants whose mothers identified as White (Black vs White adjusted odds ratio [aOR], 0.84; 95% CI, 0.75-0.96) or as non-Hispanic (Hispanic vs non-Hispanic aOR, 0.72; 95% CI, 0.60-0.87). Redirection of care discussion occurrence did not differ by maternal education level or insurance type.Conclusions and RelevanceFor infants born extremely preterm, redirection of care discussions occurred less often for Black and Hispanic infants than for White and non-Hispanic infants. It is important to explore the possible reasons underlying these differences.

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“…There are clinical parameters involved in the decision for WLST: GA, IPH extension (bilateral injury, multipolar extension), comorbidities (secondary sepsis, surgery and association with periventricular leukomalacia and/or Papile grade 3 intraventricular haemorrhage (IVH)). However, WLST also differs according to the culture and ethical values of caregivers, parents and countries 11–14…”

Section: Introductionmentioning

confidence: 99%

Variations in neonatal mortality of preterm infants with intraparenchymal haemorrhage in Europe: the EPICE cohort

Loth,

Treluyer,

Pierrat

et al. 2024

Arch Dis Child Fetal Neonatal Ed

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ObjectiveThe aim of this study was to investigate variations in mortality before neonatal intensive care unit (NICU) discharge of infants born preterm with intraparenchymal haemorrhage (IPH) in Europe with a special interest for withdrawing life-sustaining therapy (WLST).DesignSecondary analysis of the Effective Perinatal Intensive Care in Europe (EPICE) cohort, 2011–2012.SettingNineteen regions in 11 European countries.PatientsAll infants born between 24+0and 31+6weeks’ gestational age (GA) with a diagnosis of IPH.Main outcome measuresMortality rate with multivariable analysis after adjustment for GA, antenatal steroids and gender. WLST policies were described among NICUs and within countries.ResultsAmong 6828 infants born alive between 24+0and 31+6weeks’ GA and without congenital anomalies admitted to NICUs, IPH was diagnosed in 234 infants (3.4%, 95% CI 3.3% to 3.9%) and 138 of them (59%) died. The median age at death was 6 days (3–13). Mortality rates varied significantly between countries (extremes: 30%–81%; p<0.004) and most infants (69%) died after WLST. After adjustment and with reference to the UK, mortality rates were significantly higher for France, Denmark and the Netherlands, with ORs of 8.8 (95% CI 3.3 to 23.6), 5.9 (95% CI 1.6 to 21.4) and 4.8 (95% CI 1.1 to 8.9). There were variations in WLST between European regions and countries.ConclusionIn infants with IPH, rates of death before discharge and death after WLST varied between European countries. These variations in mortality impede studying reliable outcomes in infants with IPH across European countries and encourage reflection of clinical practices of WLST across European units.

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Withholding or withdrawing life-sustaining treatment in extremely low gestational age neonates

Cited by 12 publications

References 39 publications

NeoTalk: Communication Skills Training for Neonatal Clinicians

NeoTalk: Communication Skills Training for Neonatal Clinicians

Social Determinants of Health and Redirection of Care for Infants Born Extremely Preterm

Variations in neonatal mortality of preterm infants with intraparenchymal haemorrhage in Europe: the EPICE cohort

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