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

Abstract

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.

Keywords: Advance care planning; incurable anomaly; life-limiting fetal diagnosis; perinatal palliative care.