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.