Marie-Ange Einaudi

Barriers in Referring Neonatal Patients to Perinatal Palliative Care: A French Multicenter Survey

Background When an incurable fetal condition is detected, some women (or couples) would rather choose to continue with the pregnancy than opt for termination of pregnancy for medical reasons, which, in France, can be performed until full term. Such situations are frequently occurring and sometimes leading to the implementation of neonatal palliative care. The objectives of this study were to evaluate the practices of perinatal care french professionals in this context; to identify the potential obstacles that might interfere with the provision of an appropiate neonatal palliative care; and, from an opposite perspective, to determine the criteria that led, in some cases, to offer this type of care for prenatally diagnosed lethal abnormality. Methods We used an email survey sent to 434 maternal-fetal medicine specialists (MFMs) and fetal care pediatric specialists (FCPs) at 48 multidisciplinary centers for prenatal diagnosis (MCPD). Results Forty-two multidisciplinary centers for prenatal diagnosis (87.5%) took part. In total, 102 MFMs and 112 FCPs completed the survey, yielding response rate of 49.3%. One quarter of professionals (26.2%) estimated that over 20% of fetal pathologies presenting in MCPD could correspond to a diagnosis categorized as lethal (FCPs versus MFMs: 24% vs 17.2%, p = 0.04). The mean proportion of fetal abnormalities eligible for palliative care at birth was estimated at 19.30% (± 2.4) (FCPs versus MFMs: 23.4% vs 15.2%, p = 0.029). The degree of diagnostic certainty appears to be the most influencing factor (98.1%, n = 207) in the information provided to the pregnant woman with regard to potential neonatal palliative care. The vast majority of professionals, 92.5%, supported considering the practice of palliative care as a regular option to propose antenatally. Conclusions Our study reveals the clear need for training perinatal professionals in perinatal palliative care and for the standardization of practices in this field.

Longitudinal follow-up of a cohort of 350 singleton infants born at less than 32 weeks of amenorrhea: neurocognitive screening, academic outcome, and perinatal factors

OBJECTIVE To analyse the incidence of neurodevelopmental disorders at the age 6-10 years, in children born at less than 32 weeks of amenorrhea, and to identify the perinatal and neonatal factors associated with adverse neurodevelopmental outcomes at this age. STUDY DESIGN Longitudinal prospective trial in a French university and tertiary perinatal care centre. A total of 350 preterm singletons born in hospital at less than 32 weeks of amenorrhea between 1997 and 2001 were included. Children were invited for examination to screen for neurocognitive disorders between 4 and 8 years of age and re-contacted when they were between 6 and 10 years of age to evaluate school results. Three profiles of neurocognitive outcome were defined (normal, minor disorder, or major disorder) and correlated with maternal, antenatal, perinatal, and neonatal factors. RESULTS The survival rate of our cohort was 80.8% (283/350) and the proportion of survivors followed-up was 71.4% (202/283). There were 137 children (68%) with normal profiles, 29 (14%) with minor disorders, and 36 (18%) with major disorders. For those born at less than 28 weeks of amenorrhea, the survival rate was 62.7% (64/102) and the proportion of survivors followed-up was 78.1% (50/64). Among these children, 24 (48.0%) had normal outcomes, 8 (16.0%) suffered from minor disorders, and 18 (36.0%) had major disorders. The three principal independent risk factors for major or minor disorders at school age were gestational age less than 28 weeks of amenorrhea (adjusted odds ratio: 1.28 [95% confidence interval: 1.06-1.56]), chronic lung disease at birth (adjusted odds ratio: 2.92 [95% confidence interval: 1.15-7.42]), and an abnormal electroencephalogram before discharge (adjusted odds ratio: 2.61 [95% confidence interval: 1.10-6.18]). Moreover, abnormal brain ultrasonography was identified as an independent risk factor for occurrence of major disorders (adjusted odds ratio: 2.98 [95% confidence interval: 1.31-6.71]). CONCLUSION Very preterm infants remain at high risk for long-term neurodevelopmental disorders. Several neonatal factors, particularly chronic lung disease, seem to be important determinants of long-term outcome.

Projets de naissance en soins palliatifs : un domaine de la périnatalité à construire

Some couples may choose to continue the pregnancy unable to decide for termination of pregnancy. Such situations recently occurred in neonatology units and may lead to neonatal palliative care. Faced with all uncertainties inherent to medicine and the future of the baby, medical teams must inform parents of different possible outcome step by step. Consistency in the reflection and intentionality of the care is essential among all different stakeholders within the same health team to facilitate support of parents up to a possible fatal outcome. This issue in perinatal medicine seems to be to explore how caregivers can contribute in the construction of parenthood in a context of a palliative care birth plan.

Projets de naissance en soins palliatifs: un domaine de la périnatalité à construire [Palliative care birth plan: A field of perinatal medicine to build].

Some couples may choose to continue the pregnancy unable to decide for termination of pregnancy. Such situations recently occurred in neonatology units and may lead to neonatal palliative care. Faced with all uncertainties inherent to medicine and the future of the baby, medical teams must inform parents of different possible outcome step by step. Consistency in the reflection and intentionality of the care is essential among all different stakeholders within the same health team to facilitate support of parents up to a possible fatal outcome. This issue in perinatal medicine seems to be to explore how caregivers can contribute in the construction of parenthood in a context of a palliative care birth plan.

Lethal fetal abnormalities: how to approach perinatal palliative care?

Abstract Objective: Some of the antenatally diagnosed fetal pathologies are unlikely to get compatible with life. Still some women choose to continue with pregnancy. Subsequently, perinatal palliative care (PPC) has become a constructive demarche in such situations. Our study, based on a multicentric survey, reports some cases of fetal pathologies considered as lethal according to perinatal professionals and reveals the decisional process in each case. Methods: We sent by emails a questionnaire to 434 maternal–fetal medicine specialists and fetal care pediatric specialists at 48 multidisciplinary centers for prenatal diagnosis. Results: The participation rate was 49.3%. In total, 61 obstetric–gynecologists and 68 neonatologists completed the survey. The results showed that 35.4% of the pregnant women asked for the continuation of pregnancy and 24.7% asked for the termination of pregnancy. More than half of professionals (52.9%) took the initiative of informing women about the options for birth support (including PPC), while 32.7% of obstetric gynecologists did not take this initiative versus 10.2% of neonatologists (p  < 0.01). Conclusion: This study demonstrates the absolute need to provide PPC training for professionals and to standardize its practices.

Quality of life assessment in preterm children: physicians' knowledge, attitude, belief, practice--a KABP study.

BackgroundThe sequelae of extremely preterm birth have an impact on the quality of life (QoL) of these children. Standardized assessment of their QoL is rarely done in France. The aim of this study is to examine among all the types of physicians involved in the management of children born extremely preterm, their knowledge, use in routine practice and expectations concerning QoL assessment of these children using standardized questionnaires.MethodsProspective survey among heads of obstetric, neonatal medicine and paediatric neurology departments, by means of questionnaires. Two qualitative methods were used: focus groups and Delphi method.ResultsSeventy-eight physicians participated (obstetricians 24%, neonatologists 58%, paediatric neurologists 18%). The physicians considered QoL a relevant concept which they assessed subjectively. They expressed a need for information on methods of assessment. An ideal QoL questionnaire was described. Expectations regarding availability of QoL data were expressed from a medical, family and societal perspective. The impact of QoL measurement on the ethical aspect of decision-making was approached, in particular the potential impact of this tool on the decision made. Expectations were found to differ between specialties.ConclusionThis original study reports the perspective of experts on taking into consideration the QoL of children born extremely preterm. This is a subjective notion that is difficult to implement and which may influence therapeutic choices.

Preterm children quality of life evaluation: a qualitative study to approach physicians’ perception

BackgroundWhile data for preterm children health-related quality of life are available, there are little data on the perception of health-related quality of life evaluation by physicians who manage preterm children, or its use in real life and decision making. The aim of this qualitative study is to highlight among physicians, themes of reflection about health-related quality of life in extremely preterm children (less than 28 weeks’ gestation).MethodsFocus groups at a French University Hospital with physicians who manage extremely preterm children: obstetricians, intensive care physicians, neonatal physicians and paediatric neurologists. The focus groups allowed the participants to discuss (drawing on their personal experience), three principal topics regarding the health-related quality of life of preterm children: representation, expectations in daily practice and evaluation method.ResultsWe included fourteen participants in the three focus groups. Many themes emerged from the focus groups: approaches for defining health-related quality of life and difficulties of utilization, the role that health-related quality of life should have in the system of care, the problem of standards and evidence-based decision making. Physicians had difficulties with taking positions regarding this concept. There were no differences by gender, age or seniority, but points of view varied by specialty and type of practice. Physicians who had longer specialized care for extremely preterm children were more sensitive to the impact of preterm complications on health-related quality of life.ConclusionsThis study provides preliminary results about physicians’ perspective on the health-related quality of life of extremely preterm children. The themes emerged from the focus groups are classically described in other domains but not all in so clear a way (definition, interests and limits, ethical reflection). This approach was never developed in the field of prematurity with well-knowed consequences on quality of life. These results require to be confirmed on a larger representative sample. The themes and questions of this broad opinion survey will rest on the information issued from our preliminary interviews.

How do physicians perceive quality of life? Ethical questioning in neonatology

BackgroundThe outcome of very preterm infants is marked by the development of complications that can have an impact on the quality of life of the children and their families. The concept of quality of life and its evaluation in the long term raise semantic and ethical problems for French physicians in perinatal care. Our reflection aims to gain a better understanding of the representations surrounding quality of life in neonatal medicine.DiscussionIf French physicians hesitate to face this concept (through self-interest and apprehension), it is because the debate has become more complex. Formerly, the dilemma was between respect for life versus quality of life. Today, although this dilemma is still with us, the questions raised by French physicians show us that autonomy is given increasing importance. The equation to be solved now contains three variables: respect for life, well-being, autonomy. So we find ourselves between three positions and no longer two: respect for life (the ethics of conviction), quality of life based on autonomy (rationalist and secular deontologism), and quality of life based on the differential between well-being and suffering (utilitarianism).SummaryA solution could lie in consequentialism, which integrates the consequences for future generations in terms of both safeguarding of autonomy and quality of life, and puts the sacredness of life in second place but without sacrificing it. By evaluating their future quality of life, we can better respond to the needs of these children.