The role of perinatal palliative care following prenatal diagnosis of major, incurable fetal anomalies: a multicentre prospective cohort study.

OBJECTIVE: To describe prenatal decision-making processes and birth plans in pregnancies amenable to planning perinatal palliative care. DESIGN: Multicentre prospective observational study. SETTING: Nine Multidisciplinary Centres for Prenatal Diagnosis of the Paris-Ile-de-France region. POPULATION: All cases of major and incurable fetal anomaly eligible for TOP where limitation of life-sustaining treatments for the neonate was discussed in the prenatal period between 2015 and 2016. METHODS: Cases of congenital defects amenable to perinatal palliative care were prospectively included in each centre. Prenatal diagnosis, decision-making process, type of birth plan, birth characteristics, pregnancy and neonatal outcome were collected prospectively and anonymously. MAIN OUTCOME MEASURE: Final decision reached following discussions in the antenatal period. RESULTS: We identified 736 continuing pregnancies with a diagnosis of a severe fetal condition eligible for TOP. Perinatal palliative care was considered in 102/736 (13.9%) pregnancies (106 infants); discussions were multidisciplinary in 99/106 (93.4%) cases. Prenatal birth plans involved life-sustaining treatment limitation and comfort care in 73/736 (9.9%) of the pregnancies. The main reason for planning palliative care at birth was short-term inevitable death in 39 cases (53.4%). In all, 76/106 (71.7%) infants were born alive, and 18/106 (17%) infants were alive at last follow-up, including four with a perinatal palliative care birth plan. CONCLUSIONS: Only a small proportion of severe and incurable fetal disorders were potentially amenable to limitation of life-sustaining interventions. Perinatal palliative care may not be considered a universal alternative to termination of pregnancy. TWEETABLE ABSTRACT: Perinatal palliative care is planned in 10% of continuing pregnancies with a major and incurable fetal condition eligible for TOP.

Some general considerations of a human-based medicine's palliative approach to the vulnerability of the multiply disabled child before the end of life.

Specificities of situation of individuals with multiple disabilities and pediatric neurological pathologies call for specialized and multi-field competences that are commonly allowed and disallowed in contemporary clinical contexts. However what must be questioned in this matter is not only the meaning of the clinical, social, and human approach that is implemented, but also its spirit. The aim of medicine is double: to offer a technoscientific capacity (to cure as much as it is possible and always relieve suffering) and guarantee the meaning and value of the child's human and social capacities. We suggest the importance of a medicine always as care-giving whose aim(s) can be either curative or palliative, or even both at the same time with possibilities for moving back and forth between each one, is easily understandable by all professional groups and patients. It is not at the time of the death, at the last moments, that we will be able to introduce what could have given meaning, spirit and comfort in life. It is very early in the life, in the approach of care, to precisely preserve a meaning of life and to take adapted and shared care as a precious tool that we will propose to the patients, to the parents, and to the professionals. Palliative medicine can support a caring and human approach that takes account of the handicapped child's vulnerabilities not only at the end of his life, but throughout his/her life. The palliative approach and reasoning approach requires a specific, adapted training and the development of shared knowledge. Without giving up the indisputable contributions of the Evidence-Based Medicine (EBM), it is necessary to develop, in a scientific way, what we could call Human-Based Medicine (HBM).

Integrating a palliative approach into the healthcare provided by the French-African Pediatric Oncology Group's pilot units. Insights from a 3-year training program.

Working alongside local stakeholders, members of the French-African Pediatric Oncology Group developed a 3-year program to train pediatric oncology teams from 15 French-speaking countries in Africa in using analgesics and providing palliative care. This program was rolled out in three phases: initial training, in situ assessment, and advanced training in selected topics. To access this program, multidisciplinary teams had to come up with a project to improve their existing palliative care and pain management practices, and commit themselves to implementing it. All the teams invited agreed to take part in the program, which explicitly broached a subject that is often avoided in oncology teaching. The first phase was rolled out in 2017, with 65 trainees from 19 units attending one of three sessions held in Dakar, Senegal, Abidjan, Côte d'Ivoire, and Rabat, Morocco. The subsequent assessment revealed that only half the teams had started to implement their projects. The advanced training phase was therefore adjusted accordingly. A collective training session held in Marseille was attended by 15 trainees from seven teams whose projects were already underway, while in situ mentoring was provided for six other teams, through French-African twinnings in four cases. The length and openness of the program meant that we were able to identify and share the units' diverse realities, and fine-tune their projects accordingly, as well as plan ways of continuing the training both locally and collectively.

The role of the neuropediatrician in pediatric intensive care unit: Diagnosis, therapeutics and major participation in collaborative multidisciplinary deliberations about life-sustaining treatments' withdrawal.

BACKGROUND: In Pediatric Intensive Care Unit (PICU) two types of population require the intervention of neuropediatricians (NP): chronic brain diseases' patients who face repetitive and prolonged hospitalizations, and patients with acute brain failure facing the risk of potential neurologic sequelae, and both conditions may result in a limitation of life-sustaining treatments (LLST) decision. OBJECTIVE: To assess NP's involvement in LLST decisions within the PICU of a tertiary hospital. METHOD: Retrospective study of medical reports of patients hospitalized during 2014 in the Necker-Hospital PICU. Patients were selected using keywords ("cardiorespiratory arrest", "death", "withdrawal of treatment", "palliative care", "acute brain failure", or "chronic neurological disease"), and/or if they were assessed by a NP during the hospitalization. Demographic and medical data were analysed, including the NP's assessment and data about Collaborative Multidisciplinary Deliberation (CMD) to discuss potential LLST. RESULTS: Among 1160 children, 274 patients were included and 142 (56%) were assessed by a NP during their hospitalization for diagnosis (n = 55) and/or treatment (n = 95) management. NP was required for 59%-100% of patients with neurological acute failure, and for 14-44% of patients with extra neurological failure. A LLST decision was taken after a CMD for 27 (9.8%) of them, and a NP was involved in 19/27 (70%) of these decisions that occurred during the hospitalization (n = 19) or before (n = 8).12 patients died thereafter the LLST decision (40% of the 30 dead patients). CONCLUSION: NP are clearly involved in the decision-process of LLST for patients admitted in PICU, claiming for close collaboration to improve current practices and the quality of the care provided to children.

[Palliative care for newborn infants with congenital malformations or genetic abnormalities]. / Démarche palliative chez le nouveau-né atteint de malformations ou d'anomalies génétiques sévères.

The choice of palliative care can be made today in the perinatal period, as it can be made in children and adults. Palliative care, rather than curative treatment, may be considered in three clinical situations: babies born at the limits of viability, withholding/withdrawing treatments in the NICU, and babies with severe malformations of genetic abnormalities identified during pregnancy. Only the last situation is addressed hereafter. In newborn infants as in older patients, palliative care aims at taking care of the baby and at providing comfort and well-being. The presence of human beings by the newborn infant, most importantly the parents and family, is of utmost importance. The available time should not be used only for care and medical treatments. Sufficient time should be kept for the parents to interact with the baby and for human presence and warmth. The best interests of the newborn infant are the main element for guiding appropriate care. Before birth, the choice of palliative care for newborn infants requires successive steps: (1) establishing a diagnosis of malformation(s) or genetic abnormalities; (2) making a prognosis and ruling out intensive treatments at birth and thereafter; (3) giving the parents appropriate information; (4) assisting the pregnant woman in deciding to continue pregnancy while excluding intensive treatment of the newborn baby; (5) dialoguing with parents about the expected duration of the baby's life and the related uncertainty; (6) planning of palliative care to be implemented at birth; (7) preparing a plan with the parents for discharging the infant from the hospital and for taking care of him over a long time, when it is deemed possible that the baby may live for more than a few days.

[Antibiotic prophylaxis in biliary surgery]. / L'antibioprophylaxie en chirurgie biliaire.

Prophylactic antibiotics in gallbladder surgery is designed to reduce the incidence of postoperative wound infections. Bacteria isolated from the biliary tract are generally the same as those found in the pus of wounds. Prospective and placebo-controlled trials have shown the efficacy of prophylactic antibiotics in high-risk patients presenting one or more of the following criteria: age over 70 years, recent episode of acute chollecystitis, emergency cholecystectomy, presence of common duct stones, jaundice or diabetes mellitus in patients with no risk factors for gallbladder surgery, prophylactic antibiotics may not be essential. The efficacy of antibiotics in the prevention of wound infections has been demonstrated with first, second and third generation cephalosporins, ampicillin associated with clavulanate, ureido-penicillins, aminoglycosides, sulfonamides and quinolones. A single injection of antibiotic given one hour before incision is as effective as multiple-dose regimens. Currently, the choice of antibiotic should be mainly based on its cost. There is no evidence at the present time for systematic prophylactic antibiotics in laparoscopic surgery. Endoscopic procedures of the biliary tract do not require prophylactic antibiotics when obstruction has not been demonstrated.

[Distribution of a hypoxic gas mixture by retro-pollution of a medical gas distribution system]. / Distribution d'un mélange gazeux hypoxique par rétropollution d'un circuit de distribution d'oxygène par de l'air médical.

The authors report a case of retropollution through the defective gas mixer of a Logic O4T-IMV ventilator (Ohmeda) located in the recovery room. Due to a defective check valve inside the mixer, medical air entered into the oxygen pipeline when the O2 pressure decreased below the pressure inside the medical air pipeline. This incident resulted in episodes of hypoxic gas mixture delivery in the operating theatre, when nitrous oxide was associated with oxygen polluted with medical air. The occurrence of such an incident, rarely described so far, requires the association of several factors. It can be recognized without delay with the continuous use of an oxygen analyser.

[The practices of withdrawing artificial nutrition and hydration in the neonatal intensive care unit: a preliminary study]. / Étude pilote sur les pratiques de l'arrêt de la nutrition/hydratation artificielle en réanimation néonatale.

INTRODUCTION: Prematurity is one of the etiologies for severe neurological complications. Decisions to withdraw therapeutics, including artificial nutrition and hydration (ANH), are sometimes discussed. But can one withdraw ANH if the patient is a child suffering from severe neurological conditions, based on his best interests? The aim of this study was to further the understanding of the complexity of the withdrawal of ANH and its implementation in the neonatal intensive care unit (NICU). METHOD: This qualitative preliminary study based on a questionnaire was conducted on the staff in the NICU of the Pontoise medical center (France) in February 2012. The results were compared with the current knowledge on this issue and sociological data. RESULTS: Ten of the hospital staff members responded to the questionnaire: 60% considered ANH as a treatment, but the status of ANH (i.e., treatment or care) remained undefined for several respondents. Comparison with the withdrawal of mechanical ventilation or adult practices seemed to be inadequate. The staff had little experience in the domain and therefore few certainties on practices. Half of the respondents indicated that terminal sedation needed to be used. For the other half, it depended on the patient's pain. Timing was also an important notion given that the newborn is a being developing and evolving each in its own way. CONCLUSION: The withdrawal of ANH remains controversial in the NICU. Humanity, culture, and the relationship to others are ever present in the decision-making process, creating a moral opposition above and beyond ethical reflection.

[Pediatric palliative care: a national survey of French pediatric residents' knowledge, education, and clinical experience]. / Soins palliatifs pédiatriques : connaissances, expérience clinique et formation des internes de pédiatrie français. Résultats d'une enquête nationale.

BACKGROUND: The need for educational training of healthcare professionals in palliative care is an important issue. Training and practice of pediatric residents in the field of pediatric palliative care (PPC) has never been assessed, although the organization of the medical curriculum in France is currently being revised. MATERIALS AND METHODS: This study presents a national survey of pediatric residents, using a computerized anonymous questionnaire. Four different areas were studied: epidemiological data, theoretical and practical knowledge, education, and clinical experience in PPC. RESULTS: The response rate was 39% (n=365/927). Whatever their age or regional location, 25% of residents did not know any details of the French law concerning patients' rights and the end of life. Experience with PPC starts very early since 77% of the first-year pediatric residents experienced at least one child in a palliative care and/or end-of-life situation. During their entire residency, 87% of the residents had experience with PPC and nearly all (96%) end-of-life care. Furthermore, 76% had participated in announcing palliative care (cancer, ICU, etc.) or a serious illness, and 45% had met and discussed with bereaved parents. Furthermore, while 97% of the pediatric residents received training in adult palliative care, mainly before their residency, only 60% received specific PPC training. DISCUSSION AND CONCLUSION: Ninety-six percent of all French pediatric residents encountered a PPC situation during their residency. That 77% of them had experienced PPC during their first year of residency shows the importance of early training in PPC for pediatric residents. Furthermore, this study points out that there is a significant lack in PPC training since 40% of all residents in the study received no specific PPC training. Progress in education remains insufficient in the dissemination of knowledge on the legal framework and concepts of palliative medicine: while the medical curriculum is being revised, we suggest that training in medical ethics and PPC should be introduced very early and systematically.

[Multicentric study of medical care and practices in spinal muscular atrophy type 1 over two 10-year periods]. / Amyotrophie spinale type 1 : enquête multicentrique des pratiques de soins et d'accompagnement palliatif sur deux périodes successives de 10ans.

AIM: Questions about care practices and the role of palliative care in pediatric neurodegenerative diseases have led the Neuromuscular Committee of the French Society of Neurology to conduct a retrospective study in spinal muscular atrophy type 1, a genetic disease most often leading to death before the age of 1 year. MATERIAL AND METHODS: A retrospective multicenter study from pediatricians included in the reference centers of pediatric neuromuscular diseases was carried out on two 10-year periods (1989-1998 and 1999-2009). RESULTS: The 1989-1998 period included 12 centers with 106 patients, the 1999-2009 period 13 centers with 116 children. The mean age of onset of clinical signs was 2.1 months (range, 0-5.5 months), the median age at diagnosis was 4 months (range, 0-9 months) vs 3 months. The median age of death was 7.5 months (range, 0-24 months) vs 6 months. The care modalities included physiotherapy (90 %), motor support (61 % vs 26 % for the previous period), enteral nutrition by nasogastric tube (52 % vs 24 %), and 3.4 % of children had a gastrostomy (vs 1.8 %). At home, pharyngeal aspiration was used in 64 % (vs 41 %), oxygen therapy in 8 %, noninvasive ventilatory support in 7 %. The mean age at death was 8.1 months (range, 0-24 months) vs 7 months, the time from diagnosis to death was 4 months vs 3 months. Death occurred at home in 23 % vs 17 %, in a pediatric unit in 62 % vs 41 %. The use of analgesics and sedative drugs was reported in 60 % of cases: 40 % morphine (vs 18 %) and benzodiazepines in 48 % (vs 29 %). Respiratory support was limited mostly to oxygen by nasal tube (55 % vs 54 %), noninvasive ventilation in 9 % of the cases, and intubation and assisted mechanical ventilation (2 %). DISCUSSION AND CONCLUSION: These results confirm a change in practices and the development of palliative care in children with a French consensus of practices quite different from the standard care in North-America and closer to the thinking of English medical teams. A prospective study within the 2011 national hospital clinical research program (PHRC 2011) is beginning in order to evaluate practices and the role of families and caregivers.

[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.