Delivery room deaths of extremely preterm babies: an observational study.

OBJECTIVE: Many extremely preterm neonates die in the delivery room (DR) after decisions to withhold or withdraw life-sustaining treatments or after failed resuscitation. Specific palliative care is then recommended but sparse data exist about the actual management of these dying babies. The objective of this study was to describe the clinical course and management of neonates born between 22 and 26 weeks of gestation who died in the DR in France. DESIGN, SETTING, PATIENTS: Prospective study including neonates, who were liveborn between 22+0 and 26+6 weeks of gestation and died in the DR in 2011, among infants included in the EPIPAGE-2 study at the 18 centres participating in this substudy of extremely preterm neonates. Data were collected by a questionnaire completed by the professional caring for each baby. RESULTS: The study included 73 children, with a median (IQR) gestational age of 24 (23-24) weeks. Median (IQR) duration of life was 53 (20-82) min. All but one were both wrapped and warmed. Pain was assessed for 72%, although without using any scale. Gasping was described for 66%. Comfort medications were administered to 35 children (50%), significantly more frequently to babies with gasping (p=0.001). Mother-child contact was reported for 78%, and psychological support offered to parents of 92%. CONCLUSIONS: Non-pharmacological comfort care and parental support were routinely given. Comfort medication was given much more frequently than previously reported in other DRs. These data should encourage work on the indications for comfort medication and the interpretation of gasping.

[Consequences preterm birth for the family]. / Consequences pour la famille de la naissance d'un bébé grand prématuré.

Current intensive care techniques enable more and more very preterm babies to survive. It is important to be aware of the nature and extent of the specific difficulties which the parents and any siblings may encounter following this birth, both in the long and medium-term. This understanding will also enable measures for improving the support of families to be offered.

Perceived role in end-of-life decision making in the NICU affects long-term parental grief response.

BACKGROUND: Shared decision making (DM) is increasingly advocated as the most appropriate model to support parents confronted with end-of-life (EoL) decisions for a child in the neonatal intensive care unit (NICU). However, few studies have explored its impact on their long-term grief. OBJECTIVES: The aim of this study was to investigate whether parental perception of the type of involvement in the EoL decision-making process (EoL DMP) for their child in the NICU is related to their long-term grief outcome. METHODS: A retrospective study with mixed methods. The study included parents whose child died from 2002 through 2005 in one of four NICUs in different areas in France, with interviews of 78 individual parents of 53 children, 2.7 ± 0.6 years after the child's death. Parental perception of the type of involvement in the EoL DMP was determined by qualitative analysis of face-to-face interviews and classified as follows: shared, medical, informed parental and no decision. Grief reactions were assessed with the Texas Revised Inventory of Grief (TRIG-F). RESULTS: Current grief scores differed significantly according to the perceived type of EoL DM. Shared DM was associated with lower TRIG-F scores (less grief) than were the other types of EoL DM (F=7.95; p=0.05). The baby's perceived suffering was also associated with higher grief scores (F=6.51, p=0.01). CONCLUSIONS: In decisions to forego life-sustaining treatment in the NICU, the perception of a shared decision is associated in the long term with lower grief scores than perceptions of the other types of DM.

Living with a crucial decision: a qualitative study of parental narratives three years after the loss of their newborn in the NICU.

BACKGROUND: The importance of involving parents in the end-of-life decision-making-process (EOL DMP) for their child in the neonatal intensive care unit (NICU) is recognised by ethical guidelines in numerous countries. However, studies exploring parents' opinions on the type of involvement report conflicting results. This study sought to explore parents' experience of the EOL DMP for their child in the NICU. METHODS: The study used a retrospective longitudinal design with a qualitative analysis of parental experience 3 years after the death of their child in four NICUs in France. 53 face-to-face interviews and 80 telephone interviews were conducted with 164 individuals. Semi-structured interviews were conducted to explore how parents perceived their role in the decision process, what they valued about physicians' attitudes in this situation and whether their long-term emotional well being varied according to their perceived role in the EOL DMP. FINDINGS: Qualitative analysis identified four types of perceived role in the DMP: shared, medical, informed parental decision, and no decision. Shared DM was the most appreciated by parents. Medical DM was experienced as positive only when it was associated with communication. Informed parental DM was associated with feelings of anxiousness and abandonment. The physicians' attitudes that were perceived as helpful in the long term were explicit sharing of responsibility, clear expression of staff preferences, and respectful care and language toward the child. INTERPRETATION: Parents find it valuable to express their opinion in the EOL DMP of their child. Nonetheless, they do need continuous emotional support and an explicit share of the responsibility for the decision. As involvement preferences and associated feelings can vary, parents should be able to decide what role they want to play. However, our study suggests that fully autonomous decisions should be misadvised in these types of tragic choices.

Ethically complex decisions in the neonatal intensive care unit: impact of the new French legislation on attitudes and practices of physicians and nurses.

OBJECTIVES: A statute enacted in 2005 modified the legislative framework of the rights of terminally ill persons in France. Ten years after the EURONIC study, which described the self-reported practices of neonatal caregivers towards ethical decision-making, a new study was conducted to assess the impact of the new law in neonatal intensive care units (NICU) and compare the results reported by EURONIC with current practices. SETTING AND DESIGN: The study was carried out in the same two NICU as in the EURONIC qualitative study. A third centre was added to increase the sample size. From February to October 2007, 19 physicians and 17 nurses participated in semistructured interviews very similar to those for EURONIC. Content analysis identified the recurring themes emerging from the interviews. RESULTS: Compared with the EURONIC results, the caregivers reported that they pay greater attention to the views of parents and provided respectful support to the neonates when life-sustaining treatment is withdrawn. Active termination of life has become exceptional. The possibility of withdrawal of treatment, the administration of sedatives to control pain even at the risk of hastening death, the emphasis on sparing parents the burden of decision, and the relative ignorance of the law were very similar to the EURONIC findings. CONCLUSION: Both the medical and the legal regulation of practices has allowed more dialogue with the parents and more humane care for dying newborns. A new European study is necessary to investigate the possible changes in practices and attitudes also in other countries.

Neonatal end-of-life decisions and bioethical perspectives.

In the nineties the EURONIC project documented the staff views and practices regarding ethical decision-making in neonatal intensive care units of eight Western Europe countries: France, Germany, Great Britain, Italy, Luxembourg, Netherlands, Spain and Sweden. This paper reviews the changes occurred in the ethical and legal background of these countries, and discusses possible influences on neonatal care practices. To a certain extent, many of these changes appear to be in line with the neonatal physicians' views and attitudes previously documented by the EURONIC project, while some are not. Large differences persist within Western Europe on what constitutes appropriate neonatal end-of-life care.

Behavioral problems and cognitive performance at 5 years of age after very preterm birth: the EPIPAGE Study.

OBJECTIVES: We compared the frequency of behavioral problems in very preterm and term children at 5 years of age. We hypothesized that behavioral problems would be associated with cognitive impairment and environmental factors and that differences between the 2 groups would be reduced but persist after adjusting for cognitive performance and environmental factors. PATIENTS AND METHODS: The Etude Epidémiologique sur les Petits Ages Gestationnels (EPIPAGE) study was a prospective population-based cohort study that included all births occurring between 22 and 32 weeks' gestation and a control group of infants born at 39 to 40 weeks' gestation in 1997 in 9 French regions. Neonatal and obstetrics data were collected at birth. At 5 years of age, sociodemographic status and neurodevelopmental and cognitive development of the children, as well as maternal mental well-being, were assessed. The behavioral problems of 1102 very preterm and 375 term singletons without major impairments were studied by using the parent-completed Strengths and Difficulties Questionnaire. RESULTS: Parents of very preterm children reported significantly more behavioral problems, with a twofold higher prevalence compared with term children for hyperactivity/inattention, emotional symptoms, and peer problems. Behavioral problems were associated with low cognitive performance, developmental delay, hospitalizations of the child, young maternal age, and poor maternal mental well-being. Very preterm children were still at higher risk of behavioral problems compared with term children after adjustment for cognitive performance and all others factors. CONCLUSIONS: Behavioral problems were strongly related to cognitive impairment, but very preterm children were still at higher risk even after adjusting for cognitive performance. Early screening for behavioral problems should be encouraged for all very preterm children, and maternal well-being should also be the focus of special attention.

Women's views on Friendly IVF: a qualitative preliminary study.

OBJECTIVE: To study in the French Context women's experiences with a low-stimulation regimen of in vitro fertilisation (Friendly IVF) and to compare them with those of women undergoing standard IVF (S-IVF). POPULATION AND METHODS: Two assisted reproduction technology centers participated in this preliminary study. Patients'views were explored qualitatively. In-depth interviews were conducted at the end of the second monitored cycle. Twelve friendly IVF patients and 13 S-IVF patients participated in the study. RESULTS: The respondents indicated that the most positive aspect of Friendly IVF was the low doses of hormones used. Cancellation of cycles and failure of oocyte retrieval were perceived the most negatively. Women in the Friendly IVF group reported fewer side effects and expressed emotional distress less acutely than women in the S-IVF group. The Friendly IVF treatment was percieved as a first step, sustaining the hope of success with a standard treatment. CONCLUSION: Friendly IVF, as practiced in the center studied, represents a valuable alternative for most respondents as a first step in IVF treatment.

Factors associated with the choice of delivery without epidural analgesia in women at low risk in France.

BACKGROUND: Regional anesthesia is used for three-fourths of the deliveries in France. Epidural analgesia during labor is supposed to be available to all women at low risk. The purpose of our study was to examine how the choice of delivery without an epidural varied in this context according to women's characteristics, prenatal care, and type of maternity unit. METHODS: The 2003 National Perinatal Survey in France collected data about a representative sample of births. We selected 8,233 women who were at low risk and therefore should have been able to choose whether or not to deliver without epidural analgesia. Women were interviewed in the maternity unit after delivery. The factors associated with women's choice to deliver without epidural analgesia were studied with multivariable analyses. RESULTS: Of the 2,720 women who gave birth without epidural analgesia, 37 percent reported that they had not wanted one; other reasons were labor occurring too quickly (43.9%), medical contraindication (3.3%), and unavailability of an anesthesiologist (2.8%). The reported decision to deliver without epidural analgesia was closely associated with high parity. It was also more frequent among women in an unfavorable social situation (not cohabiting, no or low-qualified job) and among women who gave birth in non-university public hospitals, in small- or medium-sized maternity units, and in maternity units without an anesthesiologist always on site. CONCLUSIONS: Unfavorable social situation and organizational factors are associated with the reported choice to give birth without epidural analgesia. This finding suggests that women are not always in a position to make a real choice. It would be useful to improve the understanding of how pregnant women define their preferences and to know how these preferences change during pregnancy and labor.

Patient refusal of emergency cesarean delivery: a study of obstetricians' attitudes in Europe.

OBJECTIVE: To compare the attitudes of a large sample of obstetricians from eight European countries toward a competent woman's refusal to consent to an emergency cesarean delivery for acute fetal distress. METHODS: Obstetricians' attitudes in response to a hypothetical clinical case were surveyed through an anonymous, self-administered questionnaire. The sample included 1,530 obstetricians (response rate 77%) from 105 maternity units (response rate 70%) in eight countries: France, Germany, Italy, Luxembourg, Netherlands, Spain, Sweden and the United Kingdom. RESULTS: In every country, the majority of obstetricians would keep trying to persuade the woman, telling her that failure to perform cesarean delivery might result in the fetus surviving with disability, or even that her own life might be endangered. In Spain, France, Italy, and, to a lesser extent, Germany and Luxembourg, a consistent proportion of physicians would seek a court order to protect fetal welfare or avoid possible legal liability or both. In the United Kingdom, Sweden, and Netherlands, several respondents (59%, 41%, and 37%, respectively) would accept the woman's decision and assist vaginal delivery. Only a small minority (from 0 in the United Kingdom to 10% in France) would proceed with cesarean delivery without a court order. CONCLUSION: Case law arising from a few countries (United States, Canada, and the United Kingdom) and professional guidelines favoring women's autonomy have not solved the underlying ethical conflict, and in Europe acceptance of a woman's right to refuse cesarean delivery, at least in emergency situations, is not uniform. Differing attitudes between obstetricians from the eight countries may reflect diverse legal and ethical environments. LEVEL OF EVIDENCE: III.

Feticide during second- and third-trimester termination of pregnancy: opinions of health care professionals.

OBJECTIVE: To study the opinions of professionals on feticide being performed as the first step of late termination of pregnancy (TOP). SETTING: Tertiary care obstetrical unit with policy of routine feticide in late TOP. METHOD: Questionnaire survey. RESULTS: 101/109 professionals responded (23 midwives, 22 doctors, 24 nurses, 21 auxiliaries, 9 others). 90 had heard of feticide, 83 knew about how and 38 about when the procedure was done. When asked about what the goals of feticide were, 94 respondents quoted, 'preventing parents from facing neonatal agony', 73 'avoiding fetal pain', 85 'preventing labor ward staff from facing neonatal agony', and 60 'complying with legal rules'. 54 respondents thought feticide was beneficial to their patients or improved their own professional practice, and 71 declared the procedure was emotionally positive, yet stressful. 48 respondents declared lacking information on feticide. Respondents who had attended to feticide at least once (n = 59) knew more on feticide, and were more positive on the impact feticide had on their practice than those who had never attended a feticide (n = 42). CONCLUSIONS: In a highly specialized center, professionals had positive opinions on feticide, expecting it would avoid fetal or neonatal agony and pain.

Neurodevelopmental investigations among methylmercury-exposed children in French Guiana.

French Guiana, like its neighbors, suffers from environmental pollution with methylmercury from gold mining activities, and Amerindian communities are particularly affected. A neurological and a neurospsychological evaluation were carried out in children of three Amerindian communities with various levels of pollution: 156 children from the Upper Maroni (high exposure), 69 from Camopi on the Oyapock river (median exposure), and 153 from Awala on the Atlantic coast (low exposure). Exposure to methylmercury was measured by determination of total mercury in the hair of the children and their mothers (geometric mean, 12.7 microg/g in Upper Maroni). No major neurologic signs were observed in the children examined. After adjustment for potential confounders, we found a dose-dependent association between maternal hair mercury level and increased deep tendon reflexes, poorer coordination of the legs, and decreased performance in the Stanford-Binet Copying score, which measures visuospatial organization. In this last test, the frequency of rotation errors was high in the 5-6 years age group and increased with mercury exposure. These associations depended on the sex of child and were stronger among boys. The interpretation of these results is limited mainly by the cross-sectional design of the study. It identifies specific neurological and neuropsychological deficits, in some cases modulated by sex, which are consistent with known targets of mercury neurotoxicity.