Continuous Deep Sedation Until Death of Children at the End of Life: French Physicians' Opinions.

Objectives: To evaluate physicians' opinions concerning continuous deep sedation until death (CDSUD) and implementation of Claeys-Leonetti; a law intended to be applicable to all patients, but without a specific framework for children thus giving rise to ethically and legally complex situations. The secondary objective was to identify if physicians' characteristics could influence their opinions. Study Design: This was a national, multicenter, noninterventional cross-sectional survey from January 30, 2020, until March 1, 2020. The target population consisted of French physicians involved in children's end-of-life situations. The validated questionnaire explored respondents' characteristics and their opinions on four hypothetical pediatric clinical cases. Results: Analysis was conducted on 391 respondents. The oncological situation was more easily recognized as end of life compared with the neurological pathology (77% vs. 40.4%). Dependence on mechanical ventilation was another major factor influencing physicians in identifying end-of-life situations. Physicians clearly recognized the difference in intention between CDSUD and euthanasia. They accepted to implement CDSUD more easily in newborns. The withdrawal of artificial nutrition and hydration gave rise to divergent opinions. Respondents were in favor of adolescents' decision-making autonomy and their access to drafting advance directives. The child's best interest prevailed in case of objection by parents, except in situations outside the law's framework or in cases of disagreement within the health care team. Conclusion: Results of our study showed differences in the interpretation of the law concerning the CDSUD application framework and provide elements for reflection, which may ultimately contribute to the development of specific guidelines in CDSUD in children at the end of life.

Ethical challenges faced by French military doctors deployed in the Sahel (Operation Barkhane): a qualitative study.

BACKGROUND: French military doctors are currently deployed in the Sahel to support the armed forces of Operation Barkhane, in medical or surgical units. As well as supporting French soldiers, their other missions are diverse and complex: medical assistance to civilians and persons under control (PUC), advice to commanding officers. These tasks can create ethical dilemmas when decisions are forced upon doctors that may be in conflict with medical values or fundamental principles. Little is known about the specific dilemmas experienced by French military doctors in overseas operations. We therefore conducted a qualitative study among doctors and surgeons recently deployed to the Sahel to explore and better understand this question. METHOD: Semi-structured, face-to-face interviews were conducted with 20 French military doctors or surgeons deployed since January 2016 in medical or surgical facilities in Mali and Chad. RESULTS: All interviewed doctors reported having faced several ethical dilemmas during missions. All reported dilemmas involved the treatment of civilians (while delivering community medical assistance) or of PUC. The dilemmas involved choices as to which patients to treat, the use of care as a means to an end by military authorities, and the level of care attainable in the absence of any possible hospital follow-up. Questions of delivering care at the risk of their own safety or the mission's and of treating openly hostile patients were also brought up. Several dilemmas stemmed from the dual loyalty problem, namely the conflict between military doctors' duty of care to patients and to the military institution, but this was not the only factor involved. Contextual factors (restricted resources and security constraints) and psychological factors (especially hostility towards the enemy) were also associated with many of the reported dilemmas. CONCLUSION: This is the first reported study focusing on the ethical dilemmas encountered by French military doctors in overseas operations. It provides unique insights into their ethical experiences and should prove useful in improving operational training for healthcare personnel deployed on overseas missions.

[Prenatal vulnerabilities, ethical issues of prevention: French regional practice survey] / Vulnérabilités prénatales, enjeux éthiques de la prévention : enquête de pratiques.

OBJECTIVE: Some prenatal situations may be characterized as concerning on the medico-psycho-social level, leaving a risk of danger to the unborn child, raising different issues between prevention and protection, legal and justified. The objectives were to evaluate the professionals' perceptions with respect to the most worrying prenatal situations, to assess the practices of care, and to identify potential measures for improvement. METHOD: The research was based on a qualitative-quantitative methodology: Semi-directed interviews with experts who allowed the construction of a questionnaire, validated according to a Delphi-type methodology, and a regional survey based on the questionnaire, which was directed to the maternities and the departmental councils. RESULTS: The participation rate was 69%. The survey revealed a willingness to create regional perinatal partnerships, an awareness of ethical issues (information sharing, conflict of values, ethics of Care, vulnerability…), and a lack of knowledge of the regulatory framework (legal, ethical). Different possibilities of improvement have been proposed. CONCLUSION: Simultaneously, this study participates in the observatory missions of the ethical committee, as well as in public policies of perinatal prevention.

Lethal fetal abnormalities: how to approach perinatal palliative care?

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.

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

BACKGROUND: The 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. DISCUSSION: If 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). A 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.

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 appropriate 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.

Perceptions of lethal fetal abnormality among perinatal professionals and the challenges of neonatal palliative care.

BACKGROUND: After prenatal diagnosis of lethal fetal abnormality (LFA), some couples choose to continue the pregnancy rather than opt for termination of the pregnancy. This may result in the requirement for neonatal palliative care, which in France is prescribed by the Leonetti Law. These rare situations raise various questions about when and how palliative care is provided in cases of LFA. OBJECTIVE: The main goal of the study was to clarify the place given to the concept of perinatal palliative care within the antenatal information provided by perinatal professionals. This work was specifically aimed at revealing caregivers' perceptions of and attitudes toward LFA, how it is managed, and procedures for decision making and providing information. METHODS: This is a qualitative study using focus groups from two French Multidisciplinary Centers for Prenatal Diagnosis. All verbal production (individual statements, verbal exchanges, etc.) produced during the two focus groups was fully transcribed and the content analyzed. RESULTS: Content analysis revealed four main themes: (1) defining LFA; (2) the source and nature of information about LFA and how it is communicated; (3) therapeutic options and decisions in the management of LFA; and (4) palliative care (limits and criteria) in the context of LFA. CONCLUSIONS: Consistency as regards the perceived intention of care among all members of the health care team is essential to support parents facing a possible fatal outcome. Attitudes and practices at Multidisciplinary Centers for Prenatal Diagnosis need to be shaped on a national basis.

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

BACKGROUND: The 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. METHODS: Prospective 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. RESULTS: Seventy-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. CONCLUSION: This 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.

BACKGROUND: While 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). METHODS: Focus 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. RESULTS: We 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. CONCLUSIONS: This 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.

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.

Evaluation of a tool to screen at preschool age for minor cognitive disorders liable to affect schooling among children born premature.

PURPOSE: To evaluate a detection tool designed to help paediatricians identify, at preschool age, minor neurocognitive disorders that interfere with normal schooling. METHODS: One hundred-and-fourteen preterm singletons born between 1997 and 2001 at less than 32 weeks of amenorrhoea, in a tertiary perinatal care center, were invited to visit us for a medical examination and a rapid neurocognitive assessment (BREV) when they were aged between 4 and 8 years and were re-contacted at 6-10 years of age to evaluate their current schooling situation. Results of BREV and schooling parameters were compared. RESULTS: Mean gestational age was 29 weeks and mean birth weight was 1,164 g. Fifteen children (13.2%) showed abnormal results on BREV testing and had unusual schooling histories. Among the 68 children with normal BREV, 65 (95.6%) had achieved normal schooling. The sensitivity of the BREV test in this population for detection of minor disorders interfering with schooling was thus 83.3% (95% CI = 57.7-95.6) and the predictive value of a negative test was 95.6% (95% CI = 86.8-98.9). For the 57 children (50%) assessed before the age of 5 years, the sensitivity and the predictive value of a negative test were both 100%. CONCLUSION: Our survey shows that the BREV test can, in a population of preschool children who were born premature, screen for minor neurocognitive disorders that impact schooling parameters. BREV assessment, used in the setting of follow-up of premature infants, would identify children in need of early remedial education before schooling under-attainment or failure developed.

Neuropsychological screening of a group of preterm twins: comparison with singletons.

OBJECTS: Perform neuropsychological screening of a group of preterm twins without major brain pathology and compare it with a control group of similarly preterm children born as singletons. MATERIALS AND METHODS: Twenty-three preterm twins born at fewer than 32 weeks of gestation were tested for rapid evaluation of cognitive functions at the age of 4 years. The tests evaluated language, non-verbal performances, learning and attention deficit disorders. Cognitive profiles were established. Links between perinatal factors, clinical follow-up and cognitive outcome were investigated. Their cognitive outcome was then compared with the cognitive outcome of 31 preterm singletons with the same gestational periods. CONCLUSION: The twins' neuropsychological outcome was not more marked than that of the singletons. Birth weight discordance and chorionicity were the only predictive perinatal factors with worse outcome in the twin population.

Hospital morphine preparation for abstinence syndrome in newborns exposed to buprenorphine or methadone.

OBJECTIVE: This study was undertaken to evaluate the adequacy of a hospital formulated oral morphine preparation for management of neonatal abstinence syndrome (NAS) and to compare clinical features in infants exposed to methadone or buprenorphine in utero. METHOD: Between October 1998 and October 2004 all infants born to mothers treated with buprenorphine or methadone during pregnancy were enrolled into this prospective study. Morphine hydrochloride solution (0.2 mg/ml) was prepared without preservatives under a flow laminar air box (class 100). MEAN OUTCOME MEASURE: Morphine solution: quantitative and qualitative HPLC analysis and microbiological study at regular intervals during storage at 4 degrees C for 6 months. Maternal characteristics: age, opiate dose during pregnancy. Neonatal characteristics: gestational age at delivery, birth weight, Lipsitz scores. Morphine dose: daily morphine dose, maximum morphine dose, duration of NAS, and duration of treatment required to achieve stable Lipsitz scores below 4. STATISTICS: Kruskal-Wallis test for comparison of median values. RESULTS: Microbiological and HPLC analysis showed that the morphine preparation remained stable for 6 months at 4 degrees C. Nine methadone-exposed infants and 13 buprenorphine-exposed infants were included in the study. All infants presented NAS requiring treatment with the morphine solution. Lipsitz scores at birth were significantly different in the methadone and buprenorphine groups (P < 0.05). The methadone group required significantly higher doses of morphine preparation than the buprenorphine group during the first 38 days of treatment (P < 0.05): 0.435 +/- 0.150 mg/kg/day vs. 0.257 +/- 0.083 mg/kg/day. CONCLUSION: This hospital morphine solution is adequate for management of NAS. Preparations showed good stability and doses could be adjusted with a margin of 0.02 mg. The onset of NAS occurred within 24 h after birth in methadone-exposed infants (range 6-24 h) and within 48 h after birth in buprenorphine-exposed infants (range 24-168 h). Due to the possibility of delayed onset of NAS up to 7 days, infants born to mothers treated with buprenorphine should be kept in the hospital for an appropriate surveillance period. Treatment time was significantly longer (45 vs. 28 days) and the mean morphine doses were higher (1.7 fold) in methadone-exposed than buprenorphine-exposed infants.