title: Barriers in referring neonatal patients to perinatal palliative care: a French multicenter survey.
abstract: 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.
authors.affiliation: Aix-Marseille University/EFS/CNRS, UMR 7268 ADÉS, Espace Éthique Méditerranéen, Hospital La Timone, 13005, Marseille, France; Assistance Publique-Hôpitaux de Marseille, Hospital Nord, Department of Neonatology, 13015, Marseille, France.
authors.forename: Barthélémy
authors.initials: B
authors.lastname: Tosello
authors.affiliation: Aix-Marseille University, LPS EA 849, 13621, Aix-en-Provence, France; Assistance Publique-Hôpitaux de Marseille, Hospital La Timone, Department of Oncology, 13005, Marseille, France.
authors.forename: Lionel
authors.initials: L
authors.lastname: Dany
authors.affiliation: University Hospital Center, Hospital Sud, Department of Neonatology, Multidisciplinary Center for Prenatal Diagnosis, 35000, Rennes, France.
authors.forename: Pierre
authors.initials: P
authors.lastname: Bétrémieux
authors.affiliation: Aix-Marseille University/EFS/CNRS, UMR 7268 ADÉS, Espace Éthique Méditerranéen, Hospital La Timone, 13005, Marseille, France.
authors.forename: Pierre
authors.initials: P
authors.lastname: Le Coz
authors.affiliation: Aix-Marseille University, EA 3279, Self-Perceived Health Assessment Research Unit, 13005, Marseille, France.
authors.forename: Pascal
authors.initials: P
authors.lastname: Auquier
authors.affiliation: Assistance Publique-Hôpitaux de Marseille, Hospital Nord, Department of Neonatology, 13015, Marseille, France.
authors.forename: Catherine
authors.initials: C
authors.lastname: Gire
authors.affiliation: Aix-Marseille University/EFS/CNRS, UMR 7268 ADÉS, Espace Éthique Méditerranéen, Hospital La Timone, 13005, Marseille, France.
authors.forename: Marie-Ange
authors.initials: MA
authors.lastname: Einaudi
mesh_terms: D001291:Attitude of Health Personnel; D005260:Female; D005602:France; D006801:Humans; D007231:Infant, Newborn; D010166:Palliative Care / Q000458:organization & administration / Q000706:statistics & numerical data*; D018743:Perinatal Care / Q000458:organization & administration / Q000706:statistics & numerical data*; D011247:Pregnancy; D012017:Referral and Consultation / Q000458:organization & administration / Q000706:statistics & numerical data*