Perinatal grief following neonatal comfort care for lethal fetal condition.

BACKGROUND: The objective of the study was to assess perinatal grief experienced after continuing pregnancy and comfort care in women diagnosed with lethal fetal condition compared with termination of pregnancy for fetal anomaly (TOPFA). METHODS: This was a retrospective observational study which included women who chose to continue their pregnancy after the diagnosis of lethal fetal condition with comfort care support at birth at the Prenatal Diagnosis Center of Rennes Hospital from January 2007 to January 2017. Women were matched with controls who underwent TOPFA for the same type of fetal anomaly, gestational age at diagnosis and year. Women were evaluated by a questionnaire including the Perinatal Grief Scale. RESULTS: There were 28 patients in the continuing pregnancy group matched with 56 patients in the TOPFA group. Interval between fetal loss and completion of questionnaire was 6±3 years. Perinatal grief score was similar at 61±22 vs 58±18 (p = 0.729) in the continuing pregnancy and TOPFA groups, respectively. Women in the TOPFA group expressed more guilt. The cesarean-section rate in the continuing pregnancy group was 25%. CONCLUSION: Perinatal grief experienced by women opting for continuing pregnancy and comfort care after diagnosis of a potentially lethal fetal anomaly is not more severe than for those choosing TOPFA.

Neonatal end-of-life decision-making almost 20 years after the EURONIC study: A French survey.

Nearly 20 years ago the EURONIC study reported that French neonatologists sometimes deemed it legitimate to terminate the lives of newborn infants when the prognosis appeared extremely poor. Parents were not always informed of these decisions. Major change has occurred since then and is described herein. MATERIAL AND METHODS: A survey was conducted in the Île-de-France region, from 1 January to 31 January 2016. Professionals from 15 neonatal intensive care units (NICUs) were invited to complete a questionnaire. RESULTS: A total of 702 questionnaires were collected and 670 responses were analyzed. Knowledge of the law differed according to professional status, with 71% of MDs (medical staff, MS), compared with 28% of nonmedical staff (NMS) declaring that they had good knowledge of the law. Most MDs and NMS believed that withholding or withdrawing life-sustaining treatments (WWLST) could be decided and implemented after a delay. Half of them thought that WWLST would always result in death. Although required by law, a consulting MD attended the collegial meeting required before deciding on WWLST in only half of the cases. Parents were almost always informed of the decision thereafter by the physician in charge of their infant. The most frequent disagreement with parents was observed when WWLST was the option selected. In this case, most professionals suggested postponing WWLST, continuing intensive care and dialogue with parents, aiming at a final shared decision. Major differences were observed between NICUs with regard to the withdrawal of artificial nutrition and hydration. Finally, 14% of MDs declared that infant active terminations of life still occurred in their NICU. Major differences concern WWLST and active termination of life, whose meaning has been partly modified since 2001. CONCLUSION: Several major changes were observed in this survey: (1) treatment withdrawal decisions are made today in agreement with the law; (2) parents' information and involvement in the decision process have profoundly changed; (3) active termination of life (euthanasia) very rarely occurs; only at the end of a process in accordance with ethical principles and within the law is this decision made.

Isolated neonatal MRI punctate white matter lesions in very preterm neonates and quality of life at school age.

OBJECTIVE: To study the quality of life at school age of very preterm infants presenting isolated punctate periventricular white matter lesions (IPWL) on late-preterm or term magnetic resonance imaging (MRI). METHODS: In 1996-2000, 16 of the 131 very preterm neonates explored by MRI were found to have IPWL. At the age of 9-14, 12 children from the IPWL group were compared with 54 children born preterm but with a normal MRI (no lesion). Quality of life (Health Status Classification System Pre School questionnaire), school performance, and motor outcome were investigated. RESULTS: Overall quality of life did not differ between the groups (classified as perfect in 2/12 of the IPWL vs 20/54 in the no-lesion). The sub-items mobility and dexterity differed significantly between the two groups, with impairment in the IPWL group (p < 0.001 and p < 0.05). This group also displayed higher levels of motor impairment: they began walking later [20(4) vs. 15(3) months), p < 0.01], had higher frequencies of cerebral palsy (6/12 vs. 2/54, p < 0.05), and dyspraxia (4/12 vs. 0/54, p < 0.001). The rate of grade retention did not differ between the groups (3/12 in the IPWL group vs. 17/54 in the no-lesions group) but, as expected, was higher than that of the French general population (17.4%) during the study period. CONCLUSION: This long-term follow-up study detected no increase in the risk of subsequent cognitive impairment in very preterm infants with IPWL, but suggests that these children may have a significantly higher risk of dyspraxia, and motor impairment.

[Termination of pregnancy without feticide: A French national survey]. / L'interruption médicale de grossesse sans fœticide : une enquête nationale.

PURPOSE: Termination of pregnancy without feticide (TOPWF) is poorly known in France and far less practiced than palliative care after term birth of a child having a lethal pathology. Few teams consider it and its practice remains confidential. This survey tries to describe it. MATERIAL AND METHODS: A national survey was realized in 2014 using a questionnaire sent to 50 centers of prenatal diagnosis depending on a perinatal diagnosis center in France. RESULTS: Thirty-one centers answered the questionnaire. Seven teams shared their experience of TOPWF after 22-24 weeks gestation (WG). This practice concerned fetuses affected by "lethal" pathologies. The absence of feticide followed a parental request or a proposal of the medical team, after individual discussion in a multidisciplinary meeting. All the children born alive after TOPWF benefited of palliative care. The 24 other centers having answered our investigation performed systematically the feticide beyond 22-24 WG. They so wished "to protect" the fetus, the parents and the nursing team. A majority of these teams faced parental demands of abstention of feticide but few of them answered it favorably. CONCLUSION: A robust "palliative culture" seems essential to allow the nursing team to consider the development of TOPWF.

[Antenatal palliative plan following diagnosis of fetal lethal condition: Rennes Teaching Hospital experience]. / Projet palliatif anténatal après diagnostic de malformation fœtale létale : expérience du CHU de Rennes de 2006 à 2012.

OBJECTIVES: To study the pregnancies followed at Rennes University Hospital from 2006 to 2012, after prenatal diagnosis of lethal fetal condition and prenatal project of palliative care at birth consisting of comfort care emphasizing parent-child encounters and bonding. MATERIAL AND METHODS: Retrospective study of 20 pregnancies with diagnosis of lethal fetal condition where parents accepted antenatally the proposal or sought for palliative care at birth. RESULTS: Diagnosis was made at a median age of 20 weeks gestation (12-33). Birth occurred at 37.4 WG, 6 caesarean sections were performed for maternal conditions. Six cases of hypoplastic left heart syndrome (HLHS) share common characteristics: good Apgar score, prolonged survival (26hours to 159days) transfer to neonatology ward (6) or later at home (4). In four multiple pregnancies, the choice of SP mainly contributed to protect healthy twins during pregnancy. In birth room, there was no need for invasive procedure or drugs. Death: one occurred during labor, 8 in birth room before H2, others in neonatal ward before d4 (excluding HLHS). CONCLUSION: These data will enable better antenatal preparation of both teams and parents. Lifetime, however short, allowed parents to meet with their child alive this permitting collection of memory traces and bonding.

[Acute renal replacement therapy in pediatrics]. / Techniques de dialyse en réanimation pédiatrique.

In pediatric intensive care unit, the available modalities of acute renal replacement therapy include intermittent hemodialysis, peritoneal dialysis and continuous renal replacement therapies. No prospective studies have evaluated to date the effect of dialysis modality on the outcomes of children. The decision about dialysis modality should therefore be based on local expertise, resources available, and the patient's clinical status. Poor hemodynamic tolerance of intermittent hemodialysis is a common problem in critically ill patients. Moreover, many pediatric intensive care units are not equipped with dedicated water circuit. Peritoneal dialysis, a simple and inexpensive alternative, is the most widely available form of acute renal replacement therapy. However, its efficacy may be limited in critically ill patients. The use of continuous renal replacement therapy permits usually to reach a greater estimated dialysis dose, a better control of fluid balance, and additionally, to provide adequate nutrition.

[Neonatal palliative care and culture]. / Soins palliatifs du nouveau-né et cultures.

The period of palliative care is a difficult time for parents and caregivers because they are all weakened by the proximity of death. First of all, because of religious and cultural differences, parents and families cannot easily express their beliefs or the rituals they are required to develop; second, this impossibility results in conflicts between the caregiver team and the family with consequences for both. Caregivers are concerned to allow the expression of religious beliefs and cultural demands because it is assumed that they may promote the work of mourning by relating the dead child to its family and roots. However, caregivers' fear not knowing the cultural context to which the family belongs and having inappropriate words or gestures, as sometimes families dare not, cannot, or do not wish to describe their cultural background. We attempt to differentiate what relates to culture and to religion and attempt to identify areas of potential disagreement between doctors, staff, and family. Everyone has to work with the parents to open a space of freedom that is not limited by cultural and religious assumptions. The appropriation of medical anthropology concepts allows caregivers to understand simply the obligations imposed on parents by their culture and/or their religion and open access to their wishes. Sometimes help from interpreters, mediators, ethnopsychologists, and religious representatives is needed to understand this reality.

[Very preterm births (22-26 WG): from the decision to the implement of palliative care in the delivery room. Experience of Rennes University Hospital (France)]. / Naissances très prématurées (22 à 26 SA) : de la décision à la mise en œuvre des soins palliatifs en salle de naissance. Expérience du CHU de Rennes (France).

OBJECTIVES: After the establishment of a palliative care protocol (PC) in the delivery room, study how the postnatal management decision was taken and in particular how PC was developed. MATERIAL AND METHODS: Retrospective analysis of births between 22 and 25+6 WG, in Rennes University Hospital, during 21 months. RESULTS: Twenty-seven women meeting the criteria gave birth to 32 live children. Decision making (intensive care or PC) was fast but shared with the parents, mainly on the criterion of the term. The delivery was vaginal for 24 children. Thirteen children were resuscitated. Nineteen children received comfort care, their life was less than 3 hours, 18/19 were supported by their parents. CONCLUSION: The management of these births is consistent with current recommendations, decisions are individualized but often informally. The secondary prognostic criteria could be better taken into account. Obstetrical and pediatric management is consistent. The PC protocol is fairly well used but the collective decisions should be more formally organized and transcribed more accurately in the records, the requirements for analgesics should be based on clinical assessments.

[Severe hypoplastic left heart syndrome: palliative care after prenatal diagnosis]. / Hypoplasies sévères du ventricule gauche: soins palliatifs après un diagnostic prénatal.

We analyzed 16 cases of hypoplastic left heart syndrome (HLHS) submitted to the multidisciplinary center at Rennes Teaching Hospital from 2006 to 2010 for prenatal diagnosis. The information given to parents at the moment of choice is capital for them to make their own decision: in our team the real choice for parents stands between termination of pregnancy (TOP) and palliative care (PC). The Norwood procedure is rarely proposed to parents in France and it is performed in very few centers. Heart transplant is never proposed nor done at this age. The objectives of our study were to understand the reasons for the choice of PC, take stock of our experience of PC, and relate the benefits but also the disadvantages of PC. Over the 16 patients whose fetus had HLHS, 9 requested TOP, while 7 others wanted to live their pregnancy and meet their child at birth, therefore requesting neonatal PC. No family asked for the Norwood procedure. Four children died within the first days (D1, D2, D4, D9), 2 others died at 5 and 7 months, 1 child was operated on for coarctation of the aorta (unknown before birth) and is still alive 1.5 years later. Maternal motivations to continue the pregnancy were clearly described for 2 of the 7 cases: religious prohibition of TOP in 1 case, negative experiences of previous abortions in the second case. In another case, the parents hesitated between PC and Norwood surgery. For the other women, the reasons were less clearly expressed. In our series, HLHS is the first indication for PC from prenatal diagnosis (7/16 cases in the same period) while in the literature, heart diseases are the second cause of TOP after the neurological causes. The overrepresentation of this pathology in the families who opt for PC may be due to the unconscious image that both professionals and families have of HLHS: severity of an inevitably fatal disease, rapid postnatal death, and no suffering. Our study may change this view: a child was in fact carrying a curable defect which was discovered 12 days after birth, 2 children died at 5 and 7 months, and 5 of 6 children had major analgesics at the end of life. Nevertheless, the families were supported and followed by the PC network, except 1 who ruptured all contacts in a context of presumed intense suffering, but the other 6 do not regret their choice despite the difficulties.

The French Society of Neonatology's proposals for neonatal end-of-life decision-making.

BACKGROUND: Opinions and practice regarding end-of-life decisions in neonatal medicine show considerable variations between countries. A recent change of the legal framework, together with an ongoing debate among French neonatologists, led the French Society of Neonatology to reconsider and update its previous recommendations. OBJECTIVES: To propose a set of recommendations on the ethical principles to be respected in the making and application of end-of-life decisions. METHODS: A multidisciplinary working group on ethical issues in perinatal medicine composed of neonatologists, obstetricians and ethicists. RESULTS: Withholding or withdrawing life-sustaining treatment may be acceptable, and unreasonable therapeutic obstinacy is condemned. This implies that the child's best interests must always be the central consideration. Although the parents must be involved in the decision process so that they form an alliance with the healthcare team, and a collegial approach is of utmost importance, any crucial decision affecting the patient's life calls for individual medical responsibility. Because every newborn is rightfully an integral member of a human family, his or her dignity must be preserved. The goal of palliative care is to preserve the quality of a life, also at its end. The intention underlying an act has to be analyzed perceptively. Euthanasia, i.e. to perform an act with the deliberate intention to cause or hasten a patient's death, is legally and morally forbidden. Conversely, to withhold or withdraw a life-sustaining treatment can be justified when the intention is to cease opposing, in an unreasonable manner, the natural course of a disease. CONCLUSIONS: This statement provides the principles identified by French neonatologists on which to base their decisions concerning the ending of life. Arguments are set forth, discussed and compared with international statements and previously published considerations.

[Palliative care in delivery room for preterm infants less than 24 weeks of gestation. Analysis of two different behaviors]. / Place des soins palliatifs en salle de naissance dans la prise en charge des prématurés de moins de 24 semaines d'aménorrhée. Expérience de 2 maternités.

AIMS OF THE STUDY: To describe the management of extremely preterm newborns at the threshold of viability before 24 weeks of gestation in the delivery room when the decision has been made not to provide intensive care; to assess the role of palliative care (PC); to report the problems encountered. METHOD: A prospective qualitative study was conducted using semi-structured interviews from November 2009 to June 2010 in two level III French maternity hospitals (A and B). In each center, four midwives, two obstetricians, two pediatricians, two anesthetists, and one chief midwife were interviewed. RESULTS: In maternity hospital A, a protocol was in place that proposed PC derived from developmental care (noise limitation, drying, warming) provided by parents or staff. The problems reported were related to former euthanasia practices rather than new procedures. In maternity hospital B, no palliative care protocol had been set up. Euthanasia was practiced and accepted fatalistically because the only currently existing alternative (letting the infant die) was considered inhumane. Few problems were reported. The reluctance to carry out PC is conceptual and organizational (the ratio of births per midwife in maternity hospital B was twice that of maternity hospital A). Lexical analysis showed preferential use of the words "fetus" and "expulsion" versus "child" and "delivery" in maternity hospital B (p<0.05) when speaking of the delivery of the extremely preterm infant. Our explanatory hypothesis is that the concept of "fetus ex utero" legitimates euthanasia by assimilating it to feticide. CONCLUSION: At the time of this study, two very different approaches to the death of extremely preterm, non-resuscitated newborns in the delivery room coexisted in France. Palliative care is obviously possible, after group reflection, if a true motivation to change, a better understanding of the law, and a clear identification of the respective status of the fetus and the newborn exist in the maternity hospital.

[Implementing palliative care for newborns in various care settings. Part 3 of "Palliative care in the neonatal period"]. / La mise en oeuvre pratique des soins palliatifs dans les différents lieux de soins : 3(e) partie des réflexions et propositions autour des soins palliatifs en période néonatale.

Palliative care in newborns may take place in the delivery room and then continued either in maternity wards or in the neonatal unit. For babies developing a chronic condition, going home may be advantageous. The population concerned includes babies born with a severe intractable congenital malformation and certain extremely preterm newborn babies at the limits of viability. Care procedures as well as withholding and withdrawing treatments are reviewed.

[Palliative care in the neonatal period. Part one: general considerations]. / Réflexions et propositions autour des soins palliatifs en période néonatale : 1(re) partie considérations générales.

In France, the law dated 22 April 2005 required that all practitioners offer palliative care to patients as an alternative to unreasonable obstinacy. The practical development of palliative care during the neonatal period is not easy, even though obstetricians and neonatologists have always been aware of the ethical necessity of comfort in the dying newborn. The decision leading to palliative care begins with the recognition of patent or potential unreasonable obstinacy, followed by withdrawing treatment and technical support, and finally a palliative care plan is drawn up with the medical team and the parents.

Outbreak of Serratia marcescens in a neonatal intensive care unit: contaminated unmedicated liquid soap and risk factors.

This study describes an outbreak of Serratia marcescens and its investigation and control in a neonatal intensive care unit (NICU). During a three-month period, five infants were colonised or infected by a single strain of S. marcescens. A case-control study, culture surveys and pulse-field gel electrophoresis analysis implicated a bottle soap dispenser as a reservoir of S. marcescens (P=0.032). Infants with S. marcescens colonisation or infection were also more likely to have been exposed to a central or percutaneous venous catheter (P=0.05) and had had longer exposure to endotracheal intubation (P=0.05). Soap dispensers are used in many hospitals and may be an unrecognised source of nosocomial infections. This potential source of infection could be reduced by using 'airless' dispensers which have no air intake for the distribution of soap. Prompt intervention and strict adherence to alcoholic hand disinfection were the key factors that led to the successful control of this outbreak.

Hand washing soap as a source of neonatal Serratia marcescens outbreak.

OBJECTIVE: To describe an outbreak of Serratia marcescens infections in a neonatal intensive care unit (NICU) and to report investigations and interventions having led to the cessation of the outbreak. DESIGN: Observational study of microbiological and epidemiological investigations realised during a S. marcescens outbreak between March and October 2006. METHODS: Nine cases were observed in a 5 months period. A Serratia outbreak was therefore identified, and all the strains were compared by pulsed-field gel electrophoresis (PFGE). Data from medical notes were gathered retrospectively. Environmental samples were gathered prospectively. RESULTS: Four infants were colonized and five infants were infected by S. marcescens. PFGE revealed that three different strains were present. Seven of the nine babies were infected by only one of these strains. This same strain was found in a nonantimicrobial soap bottle (NAS) that could be the source of contamination. CONCLUSION: It is the first time that S. marcescens is found in a NAS during a neonatal nosocomial outbreak. Molecular analysis is a method of choice to compare different strains. Identification and elimination of the nosocomial source and adherence to the infection control policies are essential to succeed in the containment of a nosocomial epidemic.