“You Can Only Give Warmth to Your Baby When It’s Too Late”: Parents’ Bonding With Their Extremely Preterm and Dying Child

2017 ◽  
Vol 27 (14) ◽  
pp. 2100-2115 ◽  
Author(s):  
Andrea Abraham ◽  
Manya J. Hendriks
Keyword(s):  
End Of Life ◽  
Neonatal Intensive Care ◽  
Primary Caregivers ◽  
Physical Distance ◽  
End Of Life Decisions ◽  
Extremely Preterm ◽  
Study Experience ◽  
Preterm Babies ◽  
Child's Death ◽  
Bereavement Care

This study on end-of-life decisions in extremely preterm babies shows that the parents under study experience a multitude of stressors due to the immediate separation after birth, the alienating setting of the neonatal intensive care unit (NICU), the physical distance to the child, medical uncertainties, and upcoming decisions. Even though they are considered to be parents (assigned parenthood), they cannot act as primary caregivers. Instead, they depend on professional instructions for access and care. Embodied parenthood can be experienced only at the end-of-life, that is, during the dying trajectory and after the child’s death. Professionally supporting parents during this compressed process (from assigned and distant to embodied parenthood) contributes fundamentally to their perception of being a family and supports their mourning. This calls for the further establishment of palliative and bereavement care concepts in neonatology.

scholarly journals Intensity of perinatal care for extremely preterm babies and outcomes at a higher gestational age: evidence from the EPIPAGE-2 cohort study

2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Andrei Scott Morgan ◽  
Babak Khoshnood ◽  
Caroline Diguisto ◽  
Laurence Foix L’Helias ◽  
Laetitia Marchand-Martin ◽  
...  
Keyword(s):  
Gestational Age ◽  
Neonatal Intensive Care ◽  
Perinatal Care ◽  
Sensitivity Analyses ◽  
Intensity Level ◽  
Free Survival ◽  
Mortality And Morbidity ◽  
Antenatal Steroids ◽  
Extremely Preterm ◽  
Preterm Babies

Abstract Background Perinatal decision-making affects outcomes for extremely preterm babies (22–26 weeks’ gestational age (GA)): more active units have improved survival without increased morbidity. We hypothesised such units may gain skills and expertise meaning babies at higher gestational ages have better outcomes than if they were born elsewhere. We examined mortality and morbidity outcomes at age two for babies born at 27–28 weeks’ GA in relation to the intensity of perinatal care provided to extremely preterm babies. Methods Fetuses from the 2011 French national prospective EPIPAGE-2 cohort, alive at maternal admission to a level 3 hospital and delivered at 27–28 weeks’ GA, were included. Morbidity-free survival (survival without sensorimotor (blindness, deafness or cerebral palsy) disability) and overall survival at age two were examined. Sensorimotor disability and Ages and Stages Questionnaire (ASQ) result below threshold among survivors were secondary outcomes. Perinatal care intensity level was based on birth hospital, grouped using the ratio of 24–25 weeks’ GA babies admitted to neonatal intensive care to fetuses of the same gestation alive at maternal admission. Sensitivity analyses used ratios based upon antenatal steroids, Caesarean section, and newborn resuscitation. Multiple imputation was used for missing data; hierarchical logistic regression accounted for births nested within centres. Results 633 of 747 fetuses (84.7%) born at 27–28 weeks’ GA survived to age two. There were no differences in survival or morbidity-free survival: respectively, fully adjusted odds ratios were 0.96 (95% CI: 0.54 to 1.71) and 1.09 (95% CI: 0.59 to 2.01) in medium and 1.12 (95% CI: 0.63 to 2.00) and 1.16 (95% CI: 0.62 to 2.16) in high compared to low-intensity hospitals. Among survivors, there were no differences in sensorimotor disability or ASQ below threshold. Sensitivity analyses were consistent with the main results. Conclusions No difference was seen in survival or morbidity-free survival at two years of age among fetuses alive at maternal hospital admission born at 27–28 weeks’ GA, or in sensorimotor disability or presence of an ASQ below threshold among survivors. There is no evidence for an impact of intensity of perinatal care for extremely preterm babies on births at a higher gestational age.

scholarly journals Psychological support in end-of-life decision-making in neonatal intensive care units: Full population survey among neonatologists and neonatal nurses

2019 ◽  
Vol 34 (3) ◽  
pp. 430-434 ◽  
Author(s):  
Laure Dombrecht ◽  
Joachim Cohen ◽  
Filip Cools ◽  
Luc Deliens ◽  
Linde Goossens ◽  
...  
Keyword(s):  
Intensive Care ◽  
End Of Life ◽  
Intensive Care Units ◽  
Neonatal Intensive Care ◽  
Psychological Support ◽  
Neonatal Intensive Care Units ◽  
End Of Life Decisions ◽  
Life Decisions ◽  
End Of Life Decision ◽  
Life Decision

Background: Moral distress and burnout related to end-of-life decisions in neonates is common in neonatologists and nurses working in neonatal intensive care units. Attention to their emotional burden and psychological support in research is lacking. Aim: To evaluate perceived psychological support in relation to end-of-life decisions of neonatologists and nurses working in Flemish neonatal intensive care units and to analyse whether or not this support is sufficient. Design/participants: A self-administered questionnaire was sent to all neonatologists and neonatal nurses of all eight Flemish neonatal intensive care units (Belgium) in May 2017. The response rate was 63% (52/83) for neonatologists and 46% (250/527) for nurses. Respondents indicated their level of agreement (5-point Likert-type scale) with seven statements regarding psychological support. Results: About 70% of neonatologists and nurses reported experiencing more stress than normal when confronted with an end-of-life decision; 86% of neonatologists feel supported by their colleagues when they make end-of-life decisions, 45% of nurses feel that the treating physician listens to their opinion when end-of-life decisions are made. About 60% of both neonatologists and nurses would like more psychological support offered by their department when confronted with end-of-life decisions, and 41% of neonatologists and 50% of nurses stated they did not have enough psychological support from their department when a patient died. Demographic groups did not differ in terms of perceived lack of sufficient support. Conclusion: Even though neonatal intensive care unit colleagues generally support each other in difficult end-of-life decisions, the psychological support provided by their department is currently not sufficient. Professional ad hoc counselling or standard debriefings could substantially improve this perceived lack of support.

scholarly journals Physicians’ attitudes in relation to end-of-life decisions in Neonatal Intensive Care Units: a national multicenter survey

2020 ◽  
Vol 21 (1) ◽  
Author(s):  
Ilias Chatziioannidis ◽  
Zoi Iliodromiti ◽  
Theodora Boutsikou ◽  
Abraham Pouliakis ◽  
Evangelia Giougi ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Intensive Care ◽  
End Of Life ◽  
Intensive Care Units ◽  
Neonatal Intensive Care ◽  
Neonatal Intensive Care Units ◽  
Attitude Score ◽  
End Of Life Decisions ◽  
Life Decisions

Abstract Background End-of-life decisions for neonates with adverse prognosis are controversial and raise ethical and legal issues. In Greece, data on physicians’ profiles, motivation, values and attitudes underlying such decisions and the correlation with their background are scarce. The aim was to investigate neonatologists' attitudes in Neonatal Intensive Care Units and correlate them with self-reported practices of end-of-life decisions and with their background data. Methods A structured questionnaire was distributed to all 28 Neonatal Intensive Care Units in Greece. One hundred and sixty two out of 260 eligible physicians answered anonymously the questionnaire (response rate 66%). Demographic and professional characteristics, self-reported practices and opinions were included in the questionnaire, along with a questionnaire of 12 items measuring physicians’ attitude and views ranging from value of life to quality of life approach (scale 1–5). Results Continuation of treatment in neonates with adverse prognosis without adding further therapeutic interventions was the most commonly reported EoL practice, when compared to withdrawal of mechanical ventilation. Physicians with a high attitude score (indicative of value of quality-of-life) were more likely to limit, while those with a low score (indicative of value of sanctity-of-life) were more likely for continuation of intensive care. Physicians’ educational level (p:0.097), involvement in research (p:0.093), religion (p:0.024) and position on the existing legal framework (p < 0.001) were factors that affected the attitude score. Conclusions Physicians presented with varying end-of-life practices. Limiting interventions in neonates with poor prognosis was strongly related to their attitudes. The most important predictors for physicians' attitudes were religiousness and belief for Greek legal system reform.

End-of-life decisions in delivery room and neonatal intensive care unit

2005 ◽  
Vol 94 (11) ◽  
pp. 1626-1631 ◽  
Author(s):  
Romaine Arlettaz ◽  
Dieto Mieth ◽  
Hans-Ulrich Bucher ◽  
Gabriel Duc ◽  
Jean-Claude Fauchère
Keyword(s):  
Intensive Care Unit ◽  
Intensive Care ◽  
Neonatal Intensive Care Unit ◽  
End Of Life ◽  
Neonatal Intensive Care ◽  
Delivery Room ◽  
End Of Life Decisions ◽  
Life Decisions

scholarly journals Physicians’ attitudes in relation to End-of-life Decisions in Neonatal Intensive Care Units: a national multicenter survey

2020 ◽  
Author(s):  
Ilias Chatziioannidis ◽  
Zoi Iliodromiti ◽  
Theodora Boutsikou ◽  
Abraham Pouliakis ◽  
Evangelia Giougi ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Intensive Care ◽  
End Of Life ◽  
Intensive Care Units ◽  
Neonatal Intensive Care ◽  
Neonatal Intensive Care Units ◽  
Attitude Score ◽  
End Of Life Decisions ◽  
Life Decisions

Abstract Background: End-of-life decisions for neonates with adverse prognosis are controversial and raise ethical and legal issues. In Greece, data on physicians’ profiles, motivation, values and attitudes underlying such decisions and the correlation with their background are scarce. The aim was to investigate neonatologists' attitudes in neonatal intensive care units and correlate them with self-reported practices of end-of-life decisions and with their background data. Methods: A structured questionnaire was distributed to all 28 Neonatal Intensive Care Units in Greece. One hundred and sixty two out of 260 eligible physicians answered anonymously the questionnaire (response rate 66%). Demographic and professional characteristics, self-reported practices and opinions were included in the questionnaire, along with a questionnaire of 12 items measuring physicians’ attitude and views ranging from value of life to quality of life approach (scale 1 to 5). Results: Continuation of treatment in neonates with adverse prognosis without adding further therapeutic interventions was the most commonly reported EoL practice, when compared to withdrawal of mechanical ventilation. Physicians with a high attitude score (indicative of value of quality-of-life) were more likely to limit, while those with a low score (indicative of value of sanctity-of-life) were more likely for continuation of intensive care. Physicians’ educational level (p:0.097), involvement in research (p:0.093), religion (p:0.024) and position on the existing legal framework (p<0.001) were factors that affected the attitude score. Conclusions: Physicians presented with varying end-of-life practices. Limiting interventions in neonates with poor prognosis was strongly related to their attitudes. The most important predictors for physicians' attitudes were religiousness and belief for Greek legal system reform.

End-of-life decisions in neonatal intensive care: physicians' self-reported practices in seven European countries

The Lancet ◽  
2000 ◽  
Vol 355 (9221) ◽  
pp. 2112-2118 ◽  
Author(s):  
M Cuttini ◽  
M Nadai ◽  
M Kaminski ◽  
G Hansen ◽  
R de Leeuw ◽  
...  
Keyword(s):  
Intensive Care ◽  
End Of Life ◽  
Neonatal Intensive Care ◽  
European Countries ◽  
End Of Life Decisions ◽  
Life Decisions
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